Thinking Person's Guide to Autism

Navigating

College

A Handbook on Self Advocacy

Written for Autistic Students

from Autistic Adults

Autistic Self Advocacy Network

PO Box 66122

Washington, DC 20035

http://autisticadvocacy.org

be reproduced, distributed, or transmitted by any

means, or stored in a database or retrieval system,

without prior written consent of the publisher. Authors

have retained the rights to their individual work.

First Edition December 2012

ISBN-13: 978-1-938800-00-9

Library of Congress Cataloging-in-Publication Data has

been applied for.

Contributions by

Alexander Eveleth Amanda Vivian

Jim Sinclair Leah Jane Grantham

Lydia Brown Samantha April Davis

Steven Kapp Zoe Gross

Edited and compiled by ASAN Staff Members

Elesia Ashkenazy and Melody La

tim

Illustrations by

Noranne Kramer

Cover design by

Sara Schneider

Indexing by

Paula Durbin-Westby

This resource was funded as part of a grant from the

Administration on Developmental Disabilities for the

creation of the Autism NOW Resource and Information

Center.

Table of Contents v

Table of Contents

Foreword

Ari Ne’eman .......................................................................... 1

Introduction

Jim Sinclair ........................................................................... 7

Worth

Samantha April Davis .......................................................... 29

1. Accomodation ................................................. 30

Higher Education Transitions

Steven Kapp ........................................................................ 30

Self Accommodation

Leah Jane Grantham ............................................................ 36

Self Accommodation

Samantha April Davis .......................................................... 41

Sensory Regulation

Alexander Eveleth................................................................ 49

Better Living through Prosthetic Brain Parts

Zoe Gross ............................................................................ 53

2. Housing ............................................................ 59

Autism and Dorm Life

Lydia Brown ....................................................................... 59

Independent Campus Living

Alexander Eveleth................................................................ 63

Autism & Independent Living in College

Leah Jane Grantham ............................................................ 65

3. Health and Safety ............................................ 71

Health and Wellness

Steven Kapp ........................................................................ 71

Mental Health

Leah Jane Grantham ............................................................ 83

vi Navigating College

Safety

Samantha April Davis .......................................................... 89

4. Advocacy .......................................................... 91

Advocacy

Leah Jane Grantham ............................................................ 91

Ableism Awareness

Amanda Vivian .................................................................... 95

Professors

Samantha April Davis ........................................................ 107

Discussing Disability with Friends and in Class

Amanda Vivian .................................................................. 111

5. Social Life ....................................................... 123

Social Activities

Steven Kapp ...................................................................... 123

Social Issues

Alexander Eveleth .............................................................. 127

6. Index ................................................................ 131

Foreword 1

1.1 Foreword

Foreword

Ari Ne’eman

This book was not written for parents. Nor was it

written for doctors, teachers, service-providers or any

other kind of professional. ASAN welcomes those

readers, and we hope they’ll learn a thing or two from

this resource. Still, I felt it was valuable to begin with

that clarification. Too often, autism-related books start

from the assumption that most readers will be family

members or service-providers of Autistic people, rather

than individuals on the spectrum. Despite an

unprecedented level of public awareness of the autism

spectrum over the course of the last decade, the

national conversation about autism has usually been

about Autistic people, without Autistic people. We’re

trying to change that. As a result, the authors of this

book are adults and youth on the autism spectrum

writing primarily for an Autistic audience. So, to any of

our readers from the parent and professional

communities, please do keep reading—but when you’re

done, consider what you can do to get a copy into the

hands of the Autistic people in your life.

This book is written for current and future Autistic

college students. In our society, the words “autism” and

“college” often seem not to go well together. When I

was going through high school, I frequently had to

argue with my school’s special education system about

what I could expect after I graduated. I saw college in

my future—they were much less sure. Although my

parents were a lot more supportive, they had a lot of

anxiety about my moving to another state to attend

2 Navigating College

school. Some of you may have gone through similar

experiences growing up. Others may have had the

opposite experience, trying to deal with school systems

and family members who don’t want to accept your

need for accommodations or even the fact that you are

Autistic at all. No matter what kind of expectations you

faced before going to college, the likelihood is that you

will be attending a campus that has not given a great

deal of thought to the idea that people like us are going

to be a part of it.

Although there are some college programs geared

specifically for students on the autism spectrum, they

are of varying levels of quality, and most of you will be

going to college without any specialized autism

program. That’s okay though—we wrote this handbook

because we believe that being Autistic shouldn’t close

any doors for you when deciding to pursue higher

education. Whether you’re at a school with an autism

support program or one that offers only a very basic

disability services office, this handbook should be a

valuable resource in trying to figure out how to make

college a positive experience for you. For students with

many other kinds of differences, there are a lot of

resources available at their campus. Your school may

have a Women’s Center, a Multi-Cultural Center, a

GLBTQ Center, and any number of other diversity-

oriented programs, activities and clubs. While there are

a few colleges that now have disability pride clubs

and/or Disability Cultural Centers, most do not offer

those sorts of opportunities. Maybe you’ll be the one to

start some of these things on your campus. Until then,

though, we’ve created this handbook to make sure that

you have someplace to turn when questions arise.

Foreword 3

There are a lot of autism resources out there and even a

few ones relating to autism and higher education.

Although there are certainly a lot of flaws in this genre,

many of these publications are still very useful, and I

encourage you to take advantage of them should you

find one that fits your needs. Still, this book is different

in some important ways. It is written by Autistic people

ourselves rather than professionals or family members.

This distinction is key—we know our own needs better

than those who speak for and to us.

In addition, this book is focused on more than just

succeeding in the classroom. While classes and

homework are important parts of college, no one tries

to tell non-disabled students that this is the totality of

their college experience. Clubs, social activities,

dormitory life, parties, sex and relationships and

countless other things should take up at least as much

of your waking hours as schoolwork does. For those of

you who will be living on campus, and even for many of

you who will not be, college isn’t just a place to go to

take courses—it is a way of life. We’d be doing you a

disservice if we didn’t talk about the parts of the college

experience that happen outside of the classroom.

While writing this guide, we worked to remember that

growing up Autistic encompasses a lot of different

experiences. Some of us were in the special education

system, others received no services. Some of us were in

inclusive classrooms—others were in separate classes

or schools. Although an increasing number of Autistic

youth grow up knowing about our diagnoses, a

significant portion of our community discover their

Autistic identity in adulthood—sometimes from a

doctor, sometimes from parents or family members

4 Navigating College

and sometimes from one’s own internal recognition.

And let’s not leave out the many ways in which we are

different that have nothing to do with our diagnosis—

we Autistic folks come from every possible background.

Whether we’re talking about race, religion, gender,

sexual orientation, ethnic origin, language, other

disability status or countless other ways of reflecting

identity, the Autistic experience in this country

includes all forms of diversity. We’ve endeavored to

reflect that in this handbook. We realize we may not

always succeed—and expect that further editions will

need to be added to and revised to ensure we capture

perspectives and experiences that were left out.

Nonetheless, this is an important beginning for our

community. After decades of only being able to turn to

resources written by others, we can finally begin to

construct support systems for each other, which more

accurately reflect our priorities, needs and experiences.

A few final pieces of advice before you set out to read

this handbook: First, know that the information you

read here may provide you with different advice than

you’ve gotten from your parents or relatives. That’s

okay. One of the most important realizations you can

make as you become an adult is that there is nothing

wrong with making decisions that others disagree with.

Our family members are frequently our strongest

allies—but part of growing up is making choices, even

and especially those that are different from the choices

that other people would make for us. College is a time

for that transition to occur. It is a time for new

experiences, testing boundaries and breaking rules. It

can be a dangerous time—but that danger is part of the

Foreword 5

experience. Risk—and the right to choose to take it

on—is a necessary part of becoming an adult.

Second, understand that the “safety net” in college is

considerably weaker than what you may be used to in

high school. As Jim Sinclair explains in his introduction,

there are very different expectations under the laws

and protections that apply to students with disabilities

in K-12 school system as compared to those that apply

to students with disabilities who are in higher

education settings. Whereas in high school, the school

district possessed a responsibility to provide you with

a “free and appropriate public education” in the least

restrictive environment, in college your school is only

obligated to provide accommodations to ensure equal

access. In addition, the responsibility shifts to you to

make the request for accommodations, rather than

having your parents or your teachers make it for you.

That’s a big change. We’re hoping that this book can

make that change a little easier for you.

Finally, at the risk of sounding cliché, don’t forget to

have fun! In this book, there’s a lot of advice dealing

with the challenges and obstacles you’ll face when

going to college. Still, at the end of the day, college can

and should be a very rewarding experience. It will open

a lot of doors for you and give you a chance to define

who you want to be. That’s worth being excited about.

The reason we’re paying so much attention getting you

through the obstacles you might encounter is so that

you can get to the exciting part sooner—because we

believe that college is something everyone should have

an opportunity to experience, regardless of neurology.

So I welcome you, not just to the ASAN Navigating

College handbook, but to the college experience as a

6 Navigating College

whole. It can be a wild ride—but it is one well worth

experiencing. Make use of this handbook to help guide you

through some of the difficult parts—and don’t hesitate to

e-mail ASAN at info@autisticadvocacy.org if you have

questions about any issues that this handbook doesn’t

cover. Remember: at the end of the day, your identity

as an Autistic person and as a college student is what

you decide it should mean. Who we are should not need

to be a barrier to experiencing the things this world has

to offer. As you embark upon your college journey,

know that others like you have traversed this same

path—and that no matter what lies ahead, we’ll be

behind you, backing you up every step of the way.

—Ari Ne’eman, ASAN President

Introduction 7

1.2 Introduction

Introduction

Jim Sinclair

If you’re reading this guide, chances are you’re an

autistic student who is attending college, or about to

start college soon, or perhaps you’re still in high school

and thinking ahead to college. You have succeeded, or

expect to succeed, in earning a high school diploma.

Perhaps you’ve already applied to and been accepted

by the college or university of your choice. Or you may

be just starting to think about applying.

Wherever you are in the college process, it will help you

to understand some important differences between

what you’ve experienced in high school and what you

can expect to experience in college. The rights and

responsibilities of college students are very different

from those of students in elementary and high school.

The Laws

The American federal law protecting the rights of

disabled elementary and secondary school students is

the Individuals with Disabilities Education Act (IDEA).

Very briefly, if you are a student with a disability in

elementary or high school, your public school district

must allow you to enroll in school. It’s not allowed to

reject you on the grounds that your disability would

prevent you from mastering the regular curriculum. It is

required to assess your support needs and to provide

you with an Individualized Education Program (IEP)

that includes the supports and services you need in

order to learn. Your IEP might include non-academic

services such as physical, occupational, or speech

8 Navigating College

therapy, independent living skills training, vocational

education, and behavioral support, in addition to

academic support in the classroom. If, even with extra

supports and services, you are not able to access the

regular curriculum and/or function in the regular

classroom, the district is required to educate you with

an individually adapted curriculum and/or in an

alternate environment (the least restrictive

environment possible for you).

For more information about IDEA and the rights of

elementary and high school students with disabilities,

and resources for self-advocacy by students still in high

school, see:

http://nichcy.org/wp-content/uplo ads/docs/st1.pdf

http://fvkasa.org/resources/files/ed-advocating-hsms.php

http://nichcy.org/laws/idea

Once you leave high school and apply to or enroll in

college, you are no longer covered by the IDEA. The

laws that protect disabled college students are the

Americans with Disabilities Act (ADA) and Section 504

of the Rehabilitation Act of 1973. These laws prohibit

public institutions (including most colleges and

universities) from discriminating against “otherwise

qualified” individuals on the basis of disability.

Specifically regarding colleges and universities, this

means that a college is allowed to set standards for who

is “qualified” to be accepted as a student, and to reject

applicants who do not meet those standards. It’s just

not allowed to reject an applicant who does meet the

requirements, based solely on the fact that the

applicant has a disability.

Introduction 9

(Some colleges and universities offer special non-

degree programs especially for students with

disabilities. Those programs may have different

standards for qualified students. They may accept

disabled students who do not have high school

diplomas, or who have low grade point averages in high

school. They may offer special classes only for disabled

students, or they may permit disabled students to

attend regular classes with modified assignments or

grading.)

There are also some colleges especially for autistic or

learning-disabled students, that offer traditional

academic degree programs along with additional

disability-specific services.

Either of these kinds of programs may provide

individualized supports such as educational coaches

and life skills training. But colleges and universities are

not required to offer this kind of special program.

The rest of this section is about the legal rights of

students, and requirements for colleges and

universities, in traditional degree programs at colleges

that are not

specifically for students with disabilities.

For more information about postsecondary education

specifically for students with intellectual and

developmental disabilities, see:

http://www.thinkcollege.net/

10 Navigating College

Your Rights and Responsibilities Under the ADA

and Section 504

Once a qualified student with a disability has been

accepted by a college, the college is required to provide

reasonable academic accommodations and

modifications to provide the student with equal access

to the educational program. It is important to realize

that the accommodations and modifications required in

college are much less extensive than the services

required for high school students under IDEA. Some of

the important differences to consider are:

Student’s responsibility for notification and

documentation.

In college, it is the student’s responsibility to inform the

appropriate office (usually an office that’s called

something like Disability Support Services) of a

disability that requires accommodation. It is the

student’s responsibility to provide documentation of

the disability and to request accommodations. It is the

student’s responsibility to deliver accommodations

letters to faculty, and to self-advocate with faculty to

make sure the accommodations are received. If the

student does not self-identify, document the disability,

and request accommodations, the college is not

required to seek out that student and offer any special

services. If a professor does not provide the

accommoda

tions

the student is entitled to receive, it is

the student’s responsibility to report this to the

ADA/Section 504 Compliance Officer. The college does

not monitor faculty to make sure they comply with

students’ accommodations letters.

Introduction 11

What this means for you:

Deciding to disclose

It’s up to you to decide whether you wish to disclose

your disability and request accommodations. Some

students decide not to disclose, and to do without

disability-related accommodations. There is some risk

to this, in that if you do not request accommodations for

your disability, and you end up failing a class or getting

a poor grade due to your disability, you cannot request

that accommodations be made retroactively. You can

decide to disclose your disability and request

accommodations at any time, but those

accommodations will only be in effect from the time you

make the request. They won’t undo the poor grade you

received before you requested the accommodations.

Required documentation:

If you decide to request accommodations, you should

make an appointment with the disability support office.

You should bring up-to-date documentation of your

disability and of your functional limitations—the

impact your disability has on your ability to function in

college.

If you had an IEP in high school, it would be helpful to

bring a copy of your latest IEP, but that alone is not

enough. A letter from a doctor or psychologist

documenting your diagnosis is not enough either. Your

most recent triennial evaluation would be very helpful,

if it was completed within the last three years.

Otherwise, you should request an updated report from

a doctor or psychologist that details your functional

limitations.

12 Navigating College

If the doctor or psychologist suggests particular

accommodations that would help you in college, he or

she should clearly explain how those suggested

accommodations relate to the limitations that are

caused by your disability.

Accommodations letter

The disability support staff will work with you to write

an accommodations letter, which you will be

responsible for giving to each of your professors. Most

accommodations letters are fairly vague about the

nature of the disability. They read something like, “This

is to inform you that <student’s name> has a disability

and is entitled to reasonable accommodations under

Section 504 and the Americans with Disabilities Act,”

and then list the accommodations the professor should

provide.

It may, or may not, be in your interest to give your

professors, college administrators, and/or fellow

students more information about the nature of your

disability. This is your decision to make. The

documentation you provide to the disability support

office is confidential. They will not disclose it to anyone

else without your written consent (except in

exceptional circumstances where information-sharing

may be required by law).

Compliance

Most college professors are happy to provide

reasonable accommodations once they receive the

required information in an accommodations letter.

Occasionally a faculty member has concerns about the

reasonableness or fairness of a requested

accommodation, or believes that the request violates

Introduction 13

the professor’s academic freedom. If this happens to

you, you should first try to negotiate directly with the

professor if possible. Explain that the purpose of the

accommodations is to allow you to learn the material

that the professor wants to teach. Listen to the

professor’s concerns, and try to find a reasonable way

to meet both your and the professor’s needs. Be polite

and respectful, but do not sacrifice your own rights.

It is usually a good idea for an autistic student to have

an advocate present during this kind of discussion with

a professor. But as much as possible, you should speak

for yourself rather than sit passively and let your

advocate speak for you.

It’s also important to have a “paper trail” documenting

your communications with faculty and administrators.

You should request meetings in writing, explaining your

concerns that you wish to discuss during the meeting.

After a meeting, you should follow up with a written

summary of what was discussed and decided at the

meeting. Be sure to keep copies of your memos or

emails about your accommodation needs.

If communicating directly with the professor is not

effective, then ask the disability support office for help.

Your college should also have a compliance officer

whose job is to make sure the college does not violate

the ADA or Section 504. If the disability support office is

unable to help you resolve the problem, your next step

is to complain to the compliance officer.

If you are not able to resolve the problem by working

with administrators at your college, you may file a

complaint with the Department of Justice. Be aware that

this is a long, drawn-out process, and even if the

14 Navigating College

Department of Justice eventually decides in your favor,

the remedy might only be a requirement for the college

to change its procedures in the future. It might not help

you much, if at all. Filing a formal complaint should be a

last resort, only if you are unable to work things out

directly with the college.

Essential requirements of the program of study

In college, if a student cannot fulfill the requirements of

the course of study, even with reasonable

accommodations and modifications, the student can be

dismissed for failing to make satisfactory academic

progress. The college is not obliged to make any

modifications to the essential requirements of the

program.

What this means for you:

You should make a realistic assessment of the

requirements of the course of study, your own ability to

meet those requirements, and what accommodations

and support you would need in order to meet them.

Do not expect the college to waive essential

requirements that other students are required to meet.

Instead, work with the disability support office to

explore any support services and reasonable

accommodations that may make it possible for you to

meet those requirements.

Introduction 15

Some possible accommodations you can expect the

college to provide, if you can document your need for

them, are:

x Note takers in class, so you don’t have to split your

attention between listening to lectures and writing

down notes.

x Copies of visual aids the professor shows during

class.

x Extra time for taking exams.

x Taking exams in a separate and less distracting

environment, away from the rest of the class. (If

fluorescent lighting is a problem for you, be sure to

request a room with non-fluorescent lighting for

exams.)

x Receiving course materials in alternate format

(electronic files or audio recordings) if you have

difficulty reading text.

x Minor modifications to assignments or exams.

x Sometimes autistic or learning disabled students

receive extra time to complete assignments and

projects. However, this can very easily backfire if

you end up falling further and further behind with a

growing number of unfinished assignments as you

approach the end of the term. A more helpful and

effective accommodation might be—

x Reduced course load—taking fewer classes than a

typical full-time student, so you can spend more

time on each class, and keep up with your

assignments. Taking fewer courses at a time also

means fewer shifts in attention between different

16 Navigating College

courses, which is often a more autistic-friendly

arrangement.

x Occasionally, and only if a course is not considered

an essential requirement to a program of study, you

might be allowed to substitute a different course for

one that your disability makes particularly difficult

for you.

Student Code of Conduct

In college, if a student violates the student conduct

code, the college is not required to provide a functional

behavior assessment, any behavior intervention or

support services, or educational services in an alternate

environment. A student whose disability prevents him

or her from complying with the conduct code is not

considered to be an “otherwise qualified” student, and

is subject to the same disciplinary procedures as

nondisabled students, up to and including expulsion.

What this means for you: It is your responsibility to

manage your own behavior and to make sure you

comply with the student conduct code.

While most autistic college students are able to conduct

themselves responsibly without running afoul of

conduct codes, a small number of autistic students have

unfortunately created some negative impressions

among college faculty and administrators. Based on the

communications I’ve personally seen, the most common

conduct complaints about autistic students seem to be

“disruptive” behavior in the classroom (often this

means making too many comments or asking too many

questions, or otherwise distracting the professor and

the other students), outbursts or meltdowns in the

Introduction 17

classroom or elsewhere on campus, and inappropriate

expressions of sexuality.

You should read your college’s code of student conduct,

make sure you understand it, and if you have any

reason to think you may need help to comply with it,

arrange to get that assistance in place before you start

college!

Some suggestions for avoiding the most common kinds

of problems for autistic college students:

x To avoid distracting the class with too many

questions or comments, limit your in-class

participation to two or three brief questions/

comments per class session. If you have more

questions or comments than that, write down your

ideas. Email them to the professor later, or ask to

meet with the professor during his or her office

hours to discuss them. Better yet, research the

questions on your own, and then show the professor

what you find out.

Professors don’t generally

appreciate having over-eager students

hijack their

classroom lectures, but they do appreciate having

students who express interest and curiosity about

their subjects! By communicating your questions

and comments to the professor outside of class, via

email or meetings during office hours, you can turn

your intense autistic focus into an asset instead of

having it seen as a “behavior problem.”

x If you are prone to meltdowns (or shutdowns, which

are less “disruptive” but can also be problematic and

even dangerous), develop your own self-

management plan before you start college. If you

needed a paraprofessional to help you control your

18 Navigating College

behavior in high school, ask the disability support

office to help you identify resources for hiring an

assistant for yourself at college. (As explained below

in item 4, the college will not provide an assistant for

you, as this is considered a personal service. But the

disability support staff might be able to refer you to

other agencies to help recruit and/or pay for an

aide.) Identify stressors and triggers that put you at

risk of meltdown or shutdown, and plan ways to

avoid or deal with those situations. Some possible

strategies might be:

x scheduling “down time” between classes instead of

having one class right after another;

x having a designated “safe place” or “crash space” on

campus where you can go to be alone if you need to

decompress;

x avoiding loud areas, crowds, stimulating activities, or

anxiety-provoking meetings at times when you are

already stressed; requesting (with appropriate

documentation) a private room if you are living on

campus, to avoid the extra challenges of dealing with

a roommate; or if your college requires students to

live on campus but you would find that too stressful,

requesting (again, with appropriate documentation)

an exemption from this requirement, so you can live

at home with your family and commute to college;

x bringing an advocate or facilitator with you to

potentially confusing or difficult administrative

meetings;

x checking in as needed with a trusted friend or

mentor who can help you with relaxation

techniques.

Introduction 19

Social relationships

Social relationships in general, and sexual relationships

in particular, are complicated even for neurotypical

people. Autistic young adults often get into difficulty

due to misreading cues and misunderstanding

expectations. Traditional social skills instruction for

autistic people tends to stress emulating neurotypical

behavior. Unfortunately, this approach puts autistic

people at an inherent disadvantage and fails to tap into

autistic strengths. I recommend instead that autistic

people (and NT people who are involved in any way

with autistic people) cultivate a strong sense of

boundaries and evaluate social behaviors in functional

terms. Specifically:

x Be very careful not to violate anyone else’s personal

boundaries. Pay special attention to definitions of

sexual harassment, and scrupulously avoid doing

anything that falls within or even close to those

definitions.

x Be equally careful to protect your own personal

boundaries. Autistic people who are desperate for

acceptance and friendship, or who are simply naïve

about social expectations, often fall prey to people

who manipulate and exploit them by pretending to

be friends. Remember that real friends are people

who respect your boundaries and treat you with

respect. A person who tries to invade your

boundaries or who makes you feel inferior is not

your friend.

x Besides being careful of your own and other people’s

personal boundaries, also be careful that you are not

interfering with other people’s ability to go about

their own business.

20 Navigating College

x Be clear about distinctions between mandatory and

voluntary interactions. Mandatory things are those

you must do in order to succeed in college, whether

you want to or not. For example, if you want to earn

passing grades, you need to show up for class.

Voluntary things are those you don’t have to do if

you don’t want to, even if everyone else is doing

them. For example, if your department is having a

holiday party, and you don’t like parties, you don’t

have to go.

x If you are not violating anyone’s boundaries, are not

interfering with anyone else’s business, and are

meeting your mandatory obligations as a student,

you can reasonably assert a right to behave in ways

that others may consider strange or weird (including

opting out of things that most other people are

doing).

x If people ask you why you are doing something they

may consider weird, this is one of the circumstances

in which it can be helpful to disclose your autism and

explain how the

“weird” behavior is functional for

you. For example, you can

explain why you don’t

make normal eye contact, how a person can tell that

you’re paying attention if you’re not making eye

contact, how stimming helps you maintain your

equilibrium, how perseveration helps you stay

focused and get things done, that you find noisy

crowded parties overwhelming but are happy to

spend time with one or two people at a time, etc.

x Be aware that even non-autistic college students

often get carried away with new social experiences

to the point that it interferes with their academic

Introduction 21

focus, leading to poor grades and sometimes

dropping out of college. Splitting focus and juggling

different priorities is even more difficult for autistic

people. Consider what your own priorities are, and

avoid getting caught up in too many distractions

from your goals.

x Do not expect to have a “normal” social life, and try

not to worry too much about whether you have

enough friends or someone to date. Autistic people

have autistic relationships, which are very unique

and special and take a lot more work. Use your time

in college to learn and practice general skills in

communicating and getting along with other people,

understanding yourself and your autistic skills and

needs, and, of course, getting a good education!

When an opportunity for genuine friendship or

romance does come along, that practice will serve

you well.

Reasonable accommodations vs. personal

services

A college is required to provide reasonable

accommodations in order to make its programs

accessible to students with disabilities, but is

not required to provide personal services.

Some of the services which disabled students may be

provided in high school, but are not required to be

provided by colleges, include:

x individual therapies (occupational therapy, speech

therapy, etc.);

22 Navigating College

x individual tutoring (although some colleges have

tutoring available for any student who needs it,

regardless of disability);

x classroom aides for non-academic purposes such as

self-care, carrying and handling items, or managing

behavior; transportation to and from school;

x assistance with or instruction about activities of

daily living;

x facilitation of peer social interactions;

x most other activities or functions that occur outside

the classroom. If a student needs these kinds of

personal services in order to succeed in college, the

student needs to make his or her own arrangements

to get the services.

What this means for you:

If you need additional assistance that is considered a

personal service, the disability support office might be

able to refer you to another agency to get that service.

But do not expect the college to provide the service for

you. For example, if you have a documented need for a

classroom aide, it is a reasonable accommodation for

the college to permit the aide to come to class with you,

even though the aide is not registered as a student. But

the college does not have to hire or train an aide. It is

your responsibility to find and pay the aide, or to work

with another agency (for example, your state Vocational

Rehabilitation agency) to get funding for the aide.

For more information about your rights in college

under the ADA and Section 504, see:

http://fvkasa.org/resources/files/ed-college.php

Introduction 23

http://fvkasa.org/resources/files/ed-succeed.php

http://www.educationquest.org/transition-to-college/

24 Navigating College

College is For Adults

This may seem obvious, but elementary and high school

students are expected to be “children,” and college

students are expected to be adults. If you are still in

high school, even if you are 18, 19, or 20 years old, look

at your IEP forms. Chances are you are still referred to

as a “child” on those forms, and your parents are still

expected to represent you at your IEP mee

tin

gs, even

though the law requires the school to inform you of the

rights that transfer to you when you turn 18. For

autistic students, there’s also a good chance that well-

meaning parent/family advocates will advise parents to

seek guardianship when the student turns 18.

When a student is in college, college personnel expect

that student to be an independent, responsible adult.

They expect the student to advocate for him- or herself;

to attend and participate in meetings about his or her

academic program, progress, and accommodations; and

to make his or her own decisions. In particular,

disability support staff tend not to appreciate being

called by students’ parents about the student’s needs.

Introduction 25

What this means for you:

If your parents are supportive of your independence,

ask them to help you prepare and rehearse for meetings

at college.

You can discuss things with them and ask them for

advice if you’re not sure about something. Your parents

can absolutely continue to be supports for you.

But it’s not your parents’ job to work with the college.

You should be the one who actually meets with the

college staff. If you need an advocate or facilitator to

help you during the meetings, ask someone who is not

your parent or other family member to come with you.

A Center for Independent Living might be a good place

to find an advocate.

Resources on Campus

Even though colleges are not required to provide

disability-specific personal services, autistic students

may benefit from many services that are available for

all students at the colleges. Most colleges have some or

all of the following services available:

x Academic advising to help with exploring career

interests and possible majors.

x Coaching in study skills and time management.

x Tutoring in academic subjects.

x Help with career planning, preparing resumes, and

practicing for job interviews.

x Resident Assistants to assist with

housing/roommate issues for students living on

campus.

26 Navigating College

x A counseling center for students experiencing stress,

anxiety, social problems, or difficulty adjusting to

college life. (Be aware, though, that many counselors

do not have experience working with autistic clients.

If you feel you need help and the counselors at your

college aren’t able to help you, ask them to refer you

to an outside counselor who understands the needs of

autistic clients.)

x Student organizations may be sources of social

support and advocacy.

x Informal networking with other students can help

with finding mentors and study buddies.

You can learn about these and other services through

your college’s Office of Student Life.

Resources Outside The College

Your state Vocational Rehabilitation agency may

provide funding for disability-related personal services

that are not provided by the college, such as personal

assistants in or outside the classroom, transportation to

school, and assistive technology. Look for the Vocational

Rehabilitation agency under

your state’s Department of

Education.

Centers for Independent Living can provide advocacy,

independent living skills training, and social contact

with disabled peers. You can find out about CILs near

you at:

ttp

://www.ilru.org/html/publications/directory/inde

x. html

Introduction 27

Online forums can help with information-sharing,

networking, and practical tips. Some good autism-

specific forums are:

Autistic Daily Living

ttp

://www.yahoo

groups.com/group/au

tistic

dailyliving

University Students with Autism & Asperger’s Syndrome

ttp

://www.users.dircon.co.uk/~cns/

and of course

Autistic Self Advocacy Network

http://www.autisticadvocacy.org

Accommodation 29

1.3 Worth

Worth

Samantha April Davis

You’re a college student now. Things are different from

what you are used to. A lot is being asked of you and it’s

not always easy meeting expectations. Nobody said it

was going to be easy. You might have a bit of trouble

along the way. You might struggle. A lot of people

struggle. You might have to ask for help. You might have

to ask even when you feel that you shouldn’t have to.

You’re in college now. Remember one thing: You made it

to college because you have potential. You are in college

because you demonstrated capability to get here. If you

are struggling now, it is because you are able and, while

your needs may be different or beyond that of the

typical college student, you are capable of meeting

those challenges given proper support.

30 Navigating College

1. Accomodation

1.4 Higher Education Transitions

Higher Education Transitions

Steven Kapp

You have many considerations when planning for what

college to attend. One includes whether you begin in

community college. Many students begin in community

college after high school and transfer to a four-year

college or university to save money, allow more time to

choose what program they would like to study, or

because they do not feel prepared yet for a four-year

college. If you do not have qualifications (such as

grades, test scores, extracurricular activities,

recommendations, and essays) to get into the colleges

of your choice directly from high school, earning strong

grades in community college allows you another

opportunity to apply to a higher program. Students do

not usually live on community college campuses, so if

you would like to live away from home in college but

not feel ready yet straight from high school, you might

consider first going to community college and living

with your family while practicing daily living skills like

doing your own laundry. If you go to a college close to

your family, you might go home on the weekends to do

such chores or errands too. While I did not go to a

community college because I got into and felt ready for

most of my top choices among four-year schools, if this

did not happen or if I could not afford it, I would have

strongly considered beginning in community college. If

you do go to community college, try to take classes that

will transfer to four-year colleges of interest to you so

you can get credit for them there.

Accommodation 31

Nevertheless, you do not need to know what you want

to study before choosing to attend a four-year college.

In general I think a wise choice for an academic

program matches your interests and abilities, and

ideally also offers strong career opportunities. You

might consider both the quality (such as ranking,

reputation, or particular emphases that interest you)

and quantity (such as number and variety of majors

and minors) of academic programs. I chose a college

that had excellent programs in the two fields that most

interested me but also a wide selection of many other

programs because I might change my mind and switch.

Many if not most college students begin without a

declared major or switch majors, and my planning

process allowed me to become one of them. I switched

to another top- ranked program that interested me

without needing to experience the stressful transfer to

another college or becoming unhappy in my current or

another program.

Another planning consideration is the individual

attention you might receive. Sometimes smaller or

private colleges allow more personal attention, such as

the willingness of professors to spend significant time

with you or allow informal accommodations. In smaller

classes you might have more opportunity to make

comments or ask questions. Some large colleges or

programs offer lectures in which students listen to a

planned talk by an instructor with little to no

interruption. While in those cases they might also offer

smaller discussion sections, remembering what you

might have wanted to say about the lecture might be

more difficult, and the smaller section might be taught

by a different instructor (such as a teaching assistant)

32 Navigating College

who might give you a less precise answer. Then again,

when I enjoyed a topic and a professor’s teaching style,

my favorite academic moments as an undergraduate

came in the large lectures. Lectures offer a good

opportunity to type notes on a laptop, and although

classes with more active participation might make

using a laptop less convenient, you might consider

bringing one to all of your classes unless the instructor

does not allow them.

Similarly, colleges differ in the disability

accommodations and services they provide. Many

colleges have more knowledge about how to

accommodate students with physical or learning

disabilities but lack effective resources for autistic

people. They differ in the amount of, usefulness of, and

process for obtaining accommodations. Colleges cannot

modify content, require you to advocate for yourself,

and may have stricter requirements for documenting

your disability or challenges than in high school. I

suggest you visit the student disability office before

making your choice about colleges or at least before the

school year begins if you can, to learn about what they

offer and possibly register with them.

My personal experience provides some examples of

how a disability office might help you, and also how

that support differs across colleges. I have found that

whereas I hardly ever used accommodations in middle

school or high school, extended time on exams helped

me greatly in college because of their less structured

nature (such as fairly open-ended essays rather than

choosing among specific answers). I also went through

the disability office to get an accommodation to live in a

single room on campus, which allowed me access to

Accommodation 33

activities but also time alone for social or sensory

reasons. I had to apply for whatever particular

accommodations I believed I needed, whereas in

graduate school at a different university, the disability

office more proactively suggests accommodations for

me (even those that I did not find helpful, such as note-

taking). Few colleges offer personal help with time

management to autistic students; if a college would

offer you that accommodation, I think that might

suggest its effectiveness in other areas.

Other issues to consider relate less to academics but

still may matter greatly to you. The costs of attending

college affect the decision of many college students,

which includes thinking about how much your family

will pay (if anything), how much and what types of

financial support the college offers (such as

scholarships or grants, loans, and Work-Study to earn

money while in college), and how much money you

would agree to pay back after graduation (if anything).

This means, for example, that a private college that

generally has much more expensive tuition and fees

may become affordable if it offers you a huge

scholarship, so I suggest you keep an open mind about

your options but think critically when you must make a

decision. You might consider the location of the

program, such as proximity to family, your familiarity

with or feelings toward the surrounding community,

and the weather. Other factors that helped me to decide

included extracurricular activities like student

organizations, volunteering for community service, and

cultural and athletic events.

Regardless of the college you choose, you will have

various resources to help you address your needs. Each

34 Navigating College

college has many offices or programs that serve

students, and I suggest that you record the phone

number of the ones most relevant to you and the

college operator to direct you to others.

You might buy a planner or use organizers on your

phone, if applicable. Also, you might carry a map of the

campus, at least as you adjust. You can meet with

instructors or contact them outside class, such as by e-

mail. You might also see whether your program or

college makes student evaluations of instructors

available so you can choose one that best suits you. You

also can try to get the contact information of at least

one student in each class in case you need to ask about

schoolwork, besides for possibly building social

relationships with your peers.

Eventually you might think about transitioning to

graduate school, the next level of higher education.

Graduate school requires more independence and may

have even less structure than college, and may value

the research projects you do over grades. Many

students have more active social lives as

undergraduate college students than in graduate

school, and you might find fewer opportunities for and

less value in living on campus and participating actively

in campus events in graduate school than earlier in

college.

Despite these challenges, autistic people often have

specific interests that graduate school allows us to

specialize in to develop into more powerful talents, as

well as other useful strengths such as logical or critical

thinking skills. Too often non-autistic people

misunderstand us and do not allow us the

opportunities we need to succeed, but having an

Accommodation 35

advanced degree might offer you more protection.

Having more education may increase your chances of

not only getting and keeping a job, but one in an area

that interests you, with higher pay, and more freedom.

36 Navigating College

1.5

Self Accommodation

Leah Jane Grantham

In many ways, those of us who were born during the

late ’80s and beyond are among the luckiest, in terms of

accommodation and disability services. In a pre-

Americans With Disabilities Act world, getting even the

most basic essentials to facilitate a successful and

positive experience in work and life was a constant

battle, with very few people who possessed the

knowledge and passion to help you available.

Thanks to the passing of the ADA, much of that has

been shifted in a more positive direction. When you

first go to college, you will find that students with

disabilities are now given legal protection and the

opportunity to seek out the sources necessary to make

college work for them. But we are not yet living in a

post-ADA country. There are still many barriers that a

student needs to overcome.

Sometimes, these things require a special knowledge

on a particular topic, so you may turn to others to help

you get what you need.

Other times though, you don’t necessarily need a

specialized skill set to accomplish getting what you

need. In most situations, while a friend and advocate

can be an invaluable source, all you really need is to

look to yourself to get what is necessary.

Barriers take all sorts of forms at universities. Since

autism is an invisible disability, it’s not as easy to make

clear what you need in order to function properly,

compared to a student with a physical disability which

Accommodation 37

is self- evident. Some people, such as professors,

administrators, and university staff may express doubt

about the existence of your disability. When I came to

university, I had a difficult time with some people I was

working with, who doubted that I had the same

disability as “those kids on TV”. This made for a hostile

working environment, because I was unable to

convincingly convey my need to have certain

adjustments made for me to be at my top productivity

as a student and work-study.

Such experiences can negatively color your experience

with university, and may alienate you from

accomplishing all that you can. It’s very easy to get

downhearted after requesting that the lights be turned

down, or that earplugs be provided, and having people

reject this request and doubting the validity of your

disability. After my first encounter with such cynicism

and outright disdain, I had a difficult time asking for

anything, either from my disability coordinators, my

professors, or people around me. I entered a state of

passively attempting to make do with a series of

irritating sensory overloads and hide my pain from the

public eye.

Far from fixing the difficulties though, it caused my

grades to downward spiral, and my personal life to

suffer. I stopped enjoying activities that previously

brought pleasure to me, and instead focused all of my

time and energy on maintaining this false persona. It

took a considerable amount of energy to keep it airtight

in public, and in private, I had to resort to near constant

stimming, to clear my brain of the overload de jour.

When I began to involve myself in disability advocacy

projects though, I surrounded myself with a new type

38 Navigating College

of people who changed the way I viewed asking for

accommodation. When I first entered the room where

we were meeting, I was asked, “Is there anything we

can do to make you more comfortable?” It so happened

that the room we were meeting in had a blackboard in

it. I have a sensory issue with the sound, feeling, and

look of chalk dust and chalk, making it extremely

difficult for me to concentrate, when all I could focus on

was desperately wanting to take a wet washrag and a

bucket of warm, soapy water to clean off the

blackboard.

I didn’t make this evident until the end of the meeting,

after deciding that it was worth taking the chance at

being obnoxious to others in order to get away from

the awful chalk. To my surprise, when I asked to have

the meetings moved to a room where I didn’t have to

face a blackboard, I was met with a warm

understanding and agreement to move. Sometimes,

that’s all it takes. I noticed that, once the relocation had

taken place, I was able to fully participate in the board

meeting, and became a very productive and popular

member. Noticing the difference made me realize that,

although certain people treated my requests for certain

accommodations like a nuisance or a great struggle,

they’re not looking at the big picture. What these

accommodations truly are is a vehicle for me so that I

can equally participate in life. There may be barriers in

their attitudes, but I resolved that I was going to push

for my right to equal participation. That great epiphany

helped me work with my disabilities coordinator

behind the scene for certain accommodations

(Scheduling tests in a private room, for instance) but I

could depend upon myself in order to request other

Accommodation 39

accommodations, or simply blaze my own path towards

full participation.

Now, when I enter a classroom, I

am fully equipped. I have earplugs

in my pocket, and I have

rehearsed simple phrases to

explain their use. “I have sensory-

processing disorder, this is in case

I need to cope with unexpected

sources of noise.” I have special

pouches filled with pleasant-

feeling material, such as silk, so

that I can reach into the pouch to feel them when I need to

feel something calming and soothing.

Part of self-accommodation was learning how to

express my need for special considerations to all who

may need to know. The other half was learning to take

the initiative and proving just how necessary they were

for me as a student and employee who wishes to

exceed expectations and do the very best job possible.

Some special accommodations you use may strike

those unfamiliar with their purpose as unusual,

superfluous, or disruptive. You may elect to explain

their purpose, but you can always remember that they

are what works for you. You do not need to apologize

for what makes you happy, and what is highest priority

to you should be your right to participate equally in a

classroom or workplace environment.

It’s not easy to advocate for yourself, particularly if you

prefer to communicate and express yourself in ways

that are nonverbal, or are uncomfortable with verbal

communication. I have issues with making my speech

40 Navigating College

clear and understandable when in a tense or stressful

situation, so I have found it helpful to not only practice

what I want to say when explaining my

accommodations, I also write it down and keep cards

explaining the purpose of my tools and particular

needs.

At the end of the day, you won’t change everybody’s

mind. There will always be people who don’t consider

the benefits and joys of a diverse environment where

people of various neurotypes are given the chance to

participate on the same level as those who don’t need

to think twice about such things. It’s okay if you fail to

make them reconsider their previous prejudices. What

matters most is making sure you have the chance to at

least prove to yourself how your accommodations help

you, no matter what they say. Be proud to fight for your

right to be included.

Accommodation 41

Self Accommodation

Samantha April Davis

Accessible policy can make the difference between

success in college and struggling against a system that

does not accommodate your needs. Unfortunately,

accessible policy is often not by default and must be

secured through bureaucratic means. Furthermore,

these bureaucracies are often ill suited to the needs of

their clients or otherwise not accessible to those in

need. When this is the case one must self-advocate for

what they need.

One option when faced with an inaccessible institution

is to work within the bureaucracy to try and work it to

your advantage. This is not always easy, or possible,

but has the advantage of being enforceable and

consistent between classes and years.

A few tactics that may prove helpful in dealing with the

accommodations process:

x If you have a mental health professional with whom

you are working they should be the first person you

discuss your academic needs with. Always discuss

your needs, in detail, with this person as their report

will serve as the guidelines the disability office will

use in designing your accommodations. A few small

changes to what your doctor writes—based on what

you communicate to your doctor about your

needs—can radically change the way

accommodation negotiations play out later.

x A very common problem among autistic college

students is that we lack official documentation for

42 Navigating College

our autism or our documentation is out-of-date.

Getting new documentation may not be practical or

possible for whatever reason. Often in these

circumstances the disability office wants to help you

but is legally disallowed from providing assistance.

Consider applying to the disability office under a

related condition, such as anxiety, and working with

your advisor to produce documentation that

supports your needs. The disability office will likely

be able to help you get a diagnosis or otherwise

secure documentation you will need to do this.

x Consider seeking medical documentation for the

most difficult parts of your autism, such as anxiety

or learning difficulties. A mental health professional

may be able to make a diagnosis or otherwise

produce the salient paperwork without an autism

diagnosis which could then be used to support each

individual challenge one at a time. This may also be

helpful when you have an autism diagnosis but the

disability office refuses to recognize a specific aspect

of your disability.

x Another way of handling the lack of documentation

is to get your condition documented as a condition

contributing to another, otherwise unrelated,

condition. This is especially easy when working with

psychologists and psychiatrists as all diagnoses

made via the DSM-IV include other conditions the

client has which contribute to the presentation of

whatever disorder is being diagnosed. When part of

a DSM-IV diagnosis these conditions are known as

Axis-IV conditions. As an example, I am diagnosed

with Tourette Syndrome and part of my diagnosis is

the back pain that can be made worse by my tics.

Accommodation 43

When I sought official accommodations for my

Tourette’s I was offered accessible furniture for my

back pain.

x Which advisor you have in the disability office can

make a huge difference. You may be able to select

which staff member you have. There is likely at least

one disabled students’ organization or club on

campus. Try to get into contact with them and see

what staff other autistic students have had success

or trouble with. Listen to all the students there and

try to select a staff member who has a reputation for

being flexible, creative, and open-minded. This also

applies to university psychologists and psychiatrists

as their cooperation may be essential in providing

solid support.

x The relationship between the client and the advisor

is very important. This relationship, because of the

personalities of both parties, may not develop as it

should with every advisor. This is okay but it is

important that you find an advisor who works well

with you. If it is not, ask to see another that might

provide a better fit for you. Advisors should

understand this. This is especially important with

your mental healthcare provider.

Another option for dealing with an inaccessible

problem is to negotiate access directly with your

professors and faculty. This has the advantage of being

much more flexible in the face of unforeseen barriers as

well as the advantage of not needing as much, if any,

documentation. Of course, at the same time it suffers

the disadvantage of relying on the good graces of your

faculty. Nonetheless, because of the inflexibility of the

bureaucratic system, even students with excellent

44 Navigating College

accommodations through their disability office may

have to resort to this from time to time. For many this

may prove the only option available.

Some techniques for successfully negotiating with

professors:

x Do your best to select good professors. When

selecting your classes, ask others about various

faculty members. This becomes more difficult when

you are outside of your major but if your major has

an academic club, association, lounge or other social

space try to ask what other students think of various

professors and who they would recommend for

certain classes. A professor who has a good

reputation as a teacher and who is invested and

engaged with the success of their students is much

more likely to take steps to ensure that a disabled or

struggling student has the tools to succeed in their

class. Select a professor based on how well they are

known to work with students or how engaged they

are in their teaching rather than on how easy they

are.

x Start discussing your needs and difficulties with a

professor early on in the semester, preferably within

the first two weeks and preferably during their

office hours or when other students are not

distracting them. This is important because if the

professor reacts with hostility it gives you the

opportunity to change classes before the last day to

drop or add classes has passed.

x If you can withstand the workload consider taking

an extra class above-and-beyond what is required

for being a full-time student or beyond what is

Accommodation 45

required for financial assistance, if applicable. With

the surplus units you have the ability to drop a

hostile class without endangering your standing in

college.

x Many of the things that pose barriers to your

accessibility as an autistic individual may also prove

familiar to a neurotypical person. For this reason it

is not always necessary to frame your needs in

relation to autism. A need may, in fact, be more

relatable to a professor when framed simply as a

need or an individual difficulty for you. Most

professors are happy to provide support to a

student who is struggling simply because they want

you to succeed. It is possible for a professor to know

you are autistic and for you to frame accessibility

needs as personal requirements unrelated to your

autism.

x The most important factor in having a positive

experience with a professor is the professor

understanding that you are invested in their class.

The best way to do this is to regularly visit your

professor with questions and comments after class

or during their office hours. Interaction can be brief

and can consist of a simple personal insight to how

you relate to the material or what you think of it or a

question. The important thing is that you

consistently engage somehow with the professor

face-to-face.

x Consider making an appointment with a professor

to talk about your learning difficulties the week

before semester starts. Very few students do this

and it will allow you to start the semester in good

standing. Even if you are unable to make such an

46 Navigating College

appointment, the fact that you contacted them in

order to do so will make you stand out. Be sure to

introduce yourself as the person who asked for the

appointment once you meet the professor.

x Interactions with the professor do not have to be

culturally normative. For example, if you have social

phobia consider writing comments or questions

down on a pad of paper and showing it to the

professor after class or during their office hours so

you do not have to speak to them.

x Most departments have some kind of student club or

organization affiliated with them. Other

departments have student lounges. Consider

participating in these organizations that are part of

your major or minor. This will bring you into contact

with other students who can help you in many ways.

Participation in the student community of your

department will also bring you into contact with

your potential future faculty.

x Be prepared to negotiate. You may not always get

the accommodations you desire. Rarely, however,

will a member of the faculty leave a student with

nothing. Negotiate, be honest with your needs and

the difficulties you face, and establish a plan which

both you and your professor feel is acceptable.

x Finally, communicate early and regularly. Approach

the professor at the beginning of the semester to

talk about access and continue this conversation. If

you need to do so every week in order to work it

into your routine, do so: Three minutes to say

everything is alright this week can help when you

need to say something is wrong.

Accommodation 47

Never be afraid to admit that you are struggling.

Never be afraid of admitting you need help and

accommodations. It may not seem it at times when you

are having difficulty but the faculty and staff want you

to succeed. Even while they may not do the best job of

accommodating your needs they are there to help you.

At the very least, communicating your needs and

difficulties lets the faculty understand that you care

about your education and what they are teaching you.

Accommodation 49

1.6 Sensory Regulation

Sensory Regulation

Alexander Eveleth

Like any public environment, going to college will

expose you to a lot of unexpected and uncontrolled

factors. Dining halls are one example—they tend to be

full of people who don’t share your sensory-regulation

quirks, and who don’t mind constant input from every

direction. Your dorm-mates may like to play loud music

during the daytime. And most dorms don’t enforce

quiet hours until times when people are traditionally

sleeping. Worse still, from your perspective, you may

find yourself at a dance party— something of the

perfect storm for people who process sensory input in

an abnormal way. Parties are loud. A lot of college

students have no ill effects, neurologically at least, from

music played at levels that might leave them deaf in

their old age. Parties are frequently full of inputs of all

types from all directions—smells, music and raised

voices, flashing lights, smoke machines, etc.—that can

interact negatively with the parts of your brain that

process the information gathered by your senses.

The key to coexisting with people who don’t share your

neurological differences is to remain calm. If the dining

hall is too much for you, find an alternative place to eat

your meals, figure out when it is less crowded, or go

shopping and start packing meals for yourself. If a

dorm-mate plays their music too loudly, politely

request that they turn it down. You don’t need to

identify that the issue comes from your neurological

status—you only need to express your preference.

Most people will do the polite thing and try not to

50 Navigating College

bother you. And if parties are too much for you, find a

level of sensory input that works for you. That may

include not going at all, sticking mostly to the outside

(the fringes of dance parties are social gathering points

for people who want to hear each other talk), or taking

breaks from the stimulation. You may find yourself

acclimating with time—personally, I found that the

duration of time I could stand to be on a noisy dance

floor increased through my time spent at college. If that

happens, cool. If it doesn’t, don’t sweat it. If you don’t

make a big deal out of it, nobody will really notice.

That’s important to remember: if you take the

initiative, and manage your senses, nobody will think

anything out of the ordinary is going on, so if you’re

worried about people seeing you having sensory

trouble, remember not to overestimate their

attentiveness.

If you’re living in the dorms, there’s a line to be walked

between sensory peace and getting along with your

neighbors. Your school may have a “quiet dorm” option

that gives you a place to live with fewer interruptions.

But even there, you might have problems. You

shouldn’t have to put up with sensory regulation issues

in your living space, but you still need to live with your

neighbors. If someone is causing a problem, the first

step is addressing the issue politely. See if whoever is

causing a problem, let’s say with music, will fix it (loud

music is one of the most common problems between

dorm-mates, even in the absence of sensory regulation

matters).

If the problem persists—let’s say they decline your

request to turn down the music—the college will have

provided you with means to resolve the issue. You can

Accommodation 51

talk to your Resident Assistant (RA) or equivalent

about it— it’s their job to resolve conflicts over

personal comfort. You have a right to your own comfort

at reasonable hours, though the RA or your dorm in

general might have defined quiet and non-quiet hours.

Sound probably won’t be your only problem. Areas of

your campus will be hotspots for smokers of various

things—if it bothers you, avoid them.

As a general rule, if you find yourself becoming

overwhelmed, leave the area that’s bothering you until

you feel better—your health and comfort is more

important than whatever brought you there,

guaranteed. Take the time to take care of yourself. The

party will be there when you get back.

Accommodation 53

1.7 Better Living through Prosthetic Brain Parts

Better Living through Prosthetic Brain Parts

Zoe Gross

Hi! I’m Zoe, I’m an autistic college student, and I’m

learning to manage my life. In high school, my parents

helped me stay organized. If I forgot to eat dinner, they

would remind me, and if I was behind schedule they

would hurry me up. At college, I am the one arranging

my schedule, forcing myself to do schoolwork, and

reminding myself to eat dinner. If I forget about an

appointment, no one will remember it for me. If I go

back to sleep after my alarm clock goes off, no one can

save me from missing class.

For a lot of college students, this freedom is a purely

good thing, but for me it comes with a cost. Because of

the way my disability affects me, I don’t already have

the structures in my brain that my classmates are using

to keep themselves organized. I’m still working on my

strategies for dealing with this. So far, I’ve discovered

some tools that I use to keep me on track. I call these

tools “prosthetic brain parts” because they prop up the

parts of my brain that don’t always work as well as I

would like. While the specific things I use might not

work for you, hopefully this list will give you some

good ideas.

VISUAL TIMER

Brain function boosted:

Relationship to Time

If you’re like me and have

trouble conceptualizing time, a

visual timer might help you. On a

54 Navigating College

timer like the one pictured here, the red area slowly

decreases as time passes, showing you how much time

has elapsed and how much you have left. They come in

a lot of sizes, so they’re fairly portable. You can set

some types of visual timers to beep when the time is

up.

There are lots of ways to use a timer to help you live

independently. I set mine to show the amount of time

left before I leave for class in the morning, and that

helps me pace myself while I’m getting dressed and

packing my books. These are also good for

transitioning between activities. For example, if I’m

watching YouTube videos but will have to switch to

homework soon, I might set the timer for ten more

minutes, and glance at it occasionally to see how much

time I have left before I change activities. This makes

the transition much less abrupt.

You can also use timers for doing homework. Set it for

an hour, and then work until it winds down. Set it for

half an hour, and then take a break until it winds down.

Repeat. If you’re going to try this, I’d encourage you to

vary

the length of your study periods and break periods

until you find what works best for you. Some people

can work uninterrupted for two hours and then need

longer breaks. Other people can only focus for half an

hour at a time and might take shorter breaks.

Accommodation 55

CALENDARS AND PLANNERS

Brain function boosted: Long- and Short-Term Planning

At college, you will have a lot of dates and deadlines to

manage – not just schoolwork due dates, but

paperwork such as housing and financial aid forms as

well. It helps to have a calendar so that you can record

and remember these due dates, and take a long-term

overview of the tasks you have to complete each

semester.

Just as you can schedule a semester with a calendar,

you can schedule a day with a planner, which breaks

every day into hour or half-hour slots. Filling in a

planner allows you to see visually how much time you

are devoting to

each activity. If you find color-coding helpful, you can

use one color for scheduling studying, another color for

appointments, and so on.

For some people, a three-dimensional paper calendar

or planner works best, but other people find it helps to

keep a virtual calendar on their computer. If you spend

a large portion of your day on the computer, I

recommend keeping your calendar there. You can use a

program with a calendar component, such as Outlook,

or set up a Google Calendar for free.

If you have a Smartphone, you can keep your calendar

and planner there. This makes it easier to check and

update your calendar wherever you are.

56 Navigating College

LISTS AND FLOW CHARTS

Brain function boosted: Task Analysis

One of the first problems I encountered at college was

getting out of my room in the mornings. There are so

many small steps between waking up and walking out

the door (getting up, showering, dressing, packing…). I

don’t think very fast first thing in the morning, so

keeping these steps straight became a real challenge.

I actually have this problem with a lot of things that are

broken down into small

steps, including

academic tasks like

writing essays.

Something recently

learned, and found very

helpful, was that these

complex, multi-step

tasks can be written up

as flow charts or

numbered lists. For me,

making a flow chart that

explains the process of

leaving my room in the

morning makes that process concrete, and I can refer to

the chart if I forget what I’m doing while getting

dressed.

I make my flow charts by hand, but if this doesn’t

appeal to you, there are websites online where you can

make flow charts from templates.

Accommodation 57

ALARMS AND WAKE-UP CALLS

Brain function boosted: Super-Ego

Getting a good night’s sleep is important for college

students, but sometimes a heavy workload or a night

out with friends means you have to make do with less

than eight hours. But you still have to get up and go to

class the next day, which means you have to wake up

when your alarm clock goes off. I have a lot of trouble

with this – I have often woken up late, having missed a

class, with no memory of turning the alarm clock off

and going back to sleep.

The trick of waking up in the morning is to keep

yourself awake long enough for your sense of

responsibility to kick in. At that point, you’ll remember

why it’s important to get up and go to class. There are

several ways of achieving this – setting several alarms,

or purchasing one of those fancy alarm clocks which

runs away from you on wheels, forcing you to chase it

around the room. Alternately, you can try signing up at

a website such as snoozester.com, which will send you

automated wake-up calls until you press the right

button to indicate that you are awake.

OTHER PEOPLE

Brain function boosted: Any of the Above

Even though you’re at college and you’re becoming

more independent, there will still be times when you

need help from other people, and that’s okay. Check to

see what services your college provides for students

with disabilities. It’s possible that you might be able to

find a tutor or coach to help you with academics and

organization.

58 Navigating College

If you find friends who are willing to call you and wake

up in the morning, or help you focus while you study,

there’s nothing wrong with asking them for help. While

you might have more trouble with organization than

most people, remember that your classmates are also

living on their own for the first time, and they may be

facing some of the same issues. If you sometimes need

someone else’s help in order to focus on your

schoolwork, try studying with a friend. It could turn out

that you distract each other – or you could end up

helping to keep each other on task.

I hope these tips helped you as much as they’ve helped

me. Please remember that there will be times when you

forget assignments or sleep through classes, and that

doesn’t make you a bad person – it’s part of adjusting to

life in a new environment. Developing your coping

strategies is a gradual process, and sometimes it can be

stressful. But once you find the tools that work for you,

they will continue to help you long after college is

Housing 59

2. Housing

1.8 Autism and Dorm

Autism and Dorm Life

Lydia Brown

Sometime back in late May or early June, I submitted a

medical request for special housing to the Academic

Resource Center. My request was filed on the basis of

Asperger’s Syndrome and Sensory Processing Disorder,

and requested a single room (as opposed to having one

or more roommates) in order to best accommodate me

and prevent unfortunate situations. I learned the other

day that my request was approved, so I will be living in

a single dorm this year.

But why might a single room be a good idea for the

Autistic college student? There are several reasons.

I have heard several horror stories from other Autistic

college students or recent graduates who had horrible

experiences with the complex social issues of living

with a roommate and who ultimately found reprieve in

a single room as upperclassmen. Being friends or even

friendly with a person is vastly different than having to

live in the same small room with him or her. If you are

co- habiting, you have to make decisions about who is

allowed to do what and who is responsible for doing

what, as well as what is forbidden or restricted. If there

are problems, you are adults and you are responsible

for attempting to resolve the problem on your own

before seeking outside aid, such as from an R.A. or

someone in the Office of Housing. These are not the

kinds of social situations usually discussed or

addressed in most social skills classes, nor en-

60 Navigating College

countered anywhere but college (or, perhaps, the

military.) They are more complex and intricate than

determining whether a relationship with another

person is friendly or trustworthy, or potentially harmful

or disadvantageous. You are forced to interact with this

person on many levels, and for the Autistic person, that

can be overwhelming, daunting, and exceedingly

difficult, especially if the roommate happens to be a

neurotypical.

Then you have the sensory concerns. First of all, most of

us find that we need time to be alone, to rest and

recover from overstimulation—sensory, social, or

otherwise—that has accumulated throughout a day, and

to recharge for the next day or the next event to which

we must subject ourselves. That kind of solace and

isolation is often found in a private space such as a

bedroom. But if you are living in a space where you

have a roommate, there is no guarantee that you will

have any such alone time to recover. In fact, because

your roommate also lives in the same room, he or she

has an equal right to be

there at any or all times, and

you have absolutely no right, ever, at any time to

ask or

force your roommate to leave except by mutual consent

(which again, cannot be guaranteed.) You will then be

trapped in a vicious cycle of constant social interaction

and stimulation, and little opportunity to recover from

it.

Remember, it’s not that Autistic people are inherently

anti-social or hate other people. Instead, social

interactions are much harder for us, more enervating,

and far more costly; thus, we need this time alone in

order to be able to socialize with you.

Housing 61

But back to sensory concerns. Other than the need to

recover from social and sensory overstimulation

throughout the day, there are also concerns of sensory

stimuli in the room itself. What if the roommate likes to

wear cologne or perfume, or use other scented hygienic

products, or use a room freshener? What if the

roommate likes to play his or her music too loudly or

too softly, or puts his or her possessions in bizarre

orders? You can’t force your roommate to change

anything about the way he or she acts. You can ask

nicely for him or her to reasonably accommodate you,

and you can hope, during the roommate matching

process, that your roommate won’t be someone who

would do things that would irritate certain sensory

sensibilities.

In fact, Georgetown has a unique roommate matching

system called Charms, that acts much like a dating

service but for roommate matching. Ostensibly, students

complete an anonymous profile including preferences

like bedtime, temperature, cleanliness, willingness to

share belongings, and frequency of visitors to the dorm,

and can then search for other same-sex students with

similar profiles. Upon seeing people with matching

responses, students can initiative anonymous messaging

with their matches. If they like one another enough

through the additional questioning, they can both

request to be each other’s roommate, and will be paired

together if and only if they request each other.

While waiting for my request to be processed and either

granted or denied, I was instructed to complete this

form in the event it was denied (and that the Academic

Resource Center would override this assignment were

my request granted), and so I did. In the last part of the

62 Navigating College

profile, under additional information, I was sure to

include a stipulation that anyone living with me would

have to agree not to use any scented hygienic products

or cleaning chemicals in our room at any time. (I did get

one response before I was able to withdraw my profile

from the Charms process.) But even were I to have been

matched with a person who would have agreed to that

request (perhaps someone who was allergic to scented

to products), there are any number of other sensory

issues that I could not have possibly covered in such a

brief profile or even in conversations. Some may not be

addressed until they become a problem, and it would be

better not to create that problem if it can be avoided

without any significant cost.

So what does having a single room mean? For one, it

doesn’t mean that I will necessarily be isolated from

social life or activities on my floor. I will be part of a

Living and Learning Community (see application essay

below), which will have planned activities every so

often, and which occupies my entire floor. It does mean

that I will have the option of spending time alone to

recover from social interaction after spending a day

socializing. It means I can choose to be involved in

informal or formal activities. I can always invite other

girls to visit me in my dorm, too, at my initiative.

It means that I have taken an important step in securing

for myself a necessary accommodation to promote my

own emotional and social health. After all, it is important

for any person, student or not, Autistic or not, to be

happy and healthy in all possible ways. In my case, and

for many Autistic college students, a single room may be

the best option for the flexibility and freedom it gives us.

Housing 63

1.1 Independent Campus Living

Independent Campus Living

Alexander Eveleth

It’s possible that college will represent the first time

you’ve had to live independently and take charge of

taking care of yourself. Don’t worry about that if it’s the

case. There are plenty of people like you living

independently around the world.

Independent living represents a new set of challenges

for everybody, and not just you. You’ll be far from the

only person arriving on campus having little experience

managing all the aspects of your own life.

It will probably help to plan a schedule around classes

and schoolwork (for example, if you have a break

between two classes, consider going to the library to

get some reading done). You may find it beneficial to

plan your day out in more detail than others might, in

order to help you to manage class-time, assigned work,

and essentials such as eating, grooming, etc.

One of my friends is making a difficult class schedule

work this semester by scheduling every part of the day.

If it helps you get things done, go ahead and plan things

such as your study time. For example, it might help to

have a notebook in which you document your

obligations or interests such asassigned work, evening

events, and meetings with your professors. I started

keeping a notebook with weekly to-do lists during

freshman year and have continued the practice thus far.

Remember that maintenance of the essentials will help

you keep going on academics—you won’t be as

effective in the library if you’re missing sleep, meals, or

showers.

64 Navigating College

You’ll hopefully learn when to balance the tasks of

academics and taking care of yourself. The college

student strung out on a constant barrage of caffeine to

fuel all-nighters, unkempt and unshaven, might be a

common image when we think about colleges,

especially academically rigorous ones, but it doesn’t

have to be you. If you manage things correctly, the

times when you need to pull all-nighters—and there

will be times like that, almost certainly—can find you

showered, shaved, and ready.

There’s a lot of science out there to tell you that your

mental performance is dependent on being well fed and

rested, but another important factor is feeling good. If

you feel gross because you haven’t showered, you

won’t perform well in class or on tests. Get your work

done, but take care of yourself while you’re at it. Don’t

let yourself get so stressed that it hurts your ability to

do work.

Housing 65

1.9 Autism & Independent Living in College

Autism & Independent Living in College

Leah Jane Grantham

I frequently heard this old expression from the parents

of my friends when we were teenagers: “Eighteen and

you’re out the door!” My mother said that in so many

words to me, but I did end up leaving my home at

seventeen, a few weeks shy of my eighteenth birthday. I

had purposefully picked a university far from my home,

so that I would be forced to learn to get along with

people outside of my family. It wasn’t always so

successful, but I learned a considerable amount along

the way about personal space, the meaning of

friendship, and overcoming the awkwardness of

undressing in front of someone who’s not connected to

you by blood or romance. So far in my college career I

have lived with five roommates. The first four were in a

dormitory setting, so we had a reduced degree of

privacy and personal space to work with.

But, while living in the dormitories, I had the advantage

of being assigned to one of the quieter buildings on

campus, a single-sex dormitory for women. That in and

of itself has its own set of perks and drawbacks. It also

proved to be quieter and less triggering, sensory-

processing wise. If at all possible, I would recommend

talking with the campus housing representatives or

office to explain why it is a high priority that you get a

relatively quiet and peaceful dormitory. The disability

services or perhaps a high school counselor can assist

with this. You’re usually given the chance to fill out

your preference when filling out a housing application,

but when a school has high enrollment numbers, it may

66 Navigating College

be a good idea to not leave it up to fate. The more quiet

and studying-oriented dormitories tend to fill up

quickly, disability services and early enrollment are

key. If you are uncomfortable with speaking to them, a

letter or email explaining your situation will suffice.

You can ask a trusted friend or advocate to write it for

you if you are unsure as to how to articulate your

request.

It never occurred to me to ask for a single-person

bedroom, though it would have been within my right to

do so as a disabled student. My primary

discouragement from asking was the fact that the

private rooms tended to be placed on the

bottom/basement level of every dormitory, with

windows almost deviously placed at the level of the

parking lot. Cars would go in and out and spew their

exhaust into the rooms, choking any unfortunate

residents. Between a desire for privacy and wanting to

keep the possibility of contracting asthma and other

lung conditions to a minimum, the former lost out.

Besides, I had promised myself that I would try my best

to get along with other people in college, not only for

myself, but also for the sake of my mother. It was her

highest wish for me to learn how to be independent,

and I wanted to make her proud.

My experience with living with roommates in the

dormitories has had its own set of advantages and

difficulties. The biggest disadvantage which springs to

memory is the fact that my roommates had a penchant

for bringing friends (and in some case, boyfriends)

home with them to chat, or have a sleepover, or watch a

movie. In such a confined space, the noise of

conversation and activities would disturb me from

Housing 67

my homework and my sleep. At the time, I was unsure

how to deal with it. I was too frightened to confront my

roommates, even though they were cordial people, I

simply have a strong dislike of confrontation.

Ultimately, if I could go back in time, I would either give

a letter to the Residence Assistance (RA) of my floor, or

else write a letter to my roommates, asking a few of

them to please find a neutral third-party spot to meet

while I was sleeping or studying. It is after all, a

university policy that your right to sleep and study

outweighs the right of anyone else to socialize.

There were some definite perks to make the lack of

privacy a bit less problematic, in the long run. I have

difficulties falling and staying asleep, and sometimes I

can have erratic hours of sleep, and it proved to be a

significant preventative measure against tardiness to

live right on campus. I could roll out of bed 20 minutes

before my first class and still manage to get there on

time, a luxury I lost upon moving into the off-campus

apartments. There was also the advantage of the meal

plan, which, for someone like me, whose cooking skills

are spotty, made nutrition and maintaining a regular

schedule of eating easier. Since fresh vegetables and

fruits are expensive and can be time-consuming to

prepare in a tasty fashion, being a 5-minute walk to the

“Food Zoo” to pick out a salad and soup was a luxury I

still miss sometimes!

Privacy for stimming and other activities became a rare

and in between luxury in the dorms, sadly. Even with

overly social roommates who were frequently out with

friends, they would return unexpectedly, and I was too

embarrassed and self-conscious to stim in front of

someone who wasn’t family. I was further deterred

68 Navigating College

from stimming by the lack of comfortable furniture in

the dormitory; the furniture provided consisted of a

desk and hard back chair and the bed. Some dorms may

provide couches which are more welcoming to

stimming, but mine was not, and the bed was too high

to stim without fear of falling out and breaking

something.

Unfortunately, good, plushy furniture tends to be

expensive. The single- best solution for lack of

comfortable stimming furniture though, is wonderfully

cheap. I acquired a lovely beanbag chair, and after that,

I could stim peacefully when I was in private. They can

be found on a sliding scale of cheapness at most big-box

stores, and if the tactile sensation is to your liking, they

are a lifesaver for when you have limited furniture.

When it comes to privacy for stimming, if you are in a

dormitory that has no privacy, try either staking out a

private space outside of your dorm room, wherever

you feel most comfortable, or try to learn the habits and

schedule of your roommate, explaining to them that

you need x O’clock to Y O’clock on Z day as a private

time, and see if they agree to find an activity outside of

the dorm to do. Most people will be amicable about this

if you make it clear from the beginning that you just

need this alone time.

Conversely, I wholeheartedly recommend spending as

little time in your dorm room as possible. It may be a safe

space and wonderful to return to in order to calm yourself

down and find your ground, but there is freedom and joy

in just wandering around the town or campus. If you are

new to the town, then this is especially important, as it will

give you a sense of things. If you have a poor sense of

direction and worry you couldn’t find your way back, try

Housing 69

going with a trusted friend. Or, if you wish to have alone

time, a service dog/animal is a wonderful way of

getting around town without having to worry about

being impeded by a poor sense of direction. If you are

new to the town, both you and the service animal needs

to get used to these new places, but after a while, it will

be second nature to the dog to go to any place in town.

I found the local library to be a marvelous sanctuary for

when I needed to get away from my dorm room. Like

many people, I felt it necessary when I moved to

Missoula to cultivate a “third space”, that is, somewhere

that was not school, work, or my dorm, where I could

go to clear my head and enjoy myself. Coffee houses are

popular in college areas, but be sure to bring earplugs if

your ears are sensitive, they can be noisy. I personally

adore the smell of coffee roasting and tea brewing, but

the smells can be bothersome for those with sensitive

nostrils. Whatever works for you as a sanctuary, seek it

out. They can be the best part of living independently.

All in all, the best advice I can give when choosing to

live independently is to consider what you want out of

the experience, and try to make that a reality. You have

every right to expect to be treated with courtesy and

have your accommodations met by your university and

potential landlords.

Don’t be bullied or forced to believe that you will not be

able to live independently without accepting that you

can’t have your accommodations. They are part of the

set that will help you lead a happy, fulfilling

independent life while in college.

Health and Safety 71

3. Health and Safety

1.10

Health and Wellness

Steven Kapp

Achieving a healthy lifestyle through an appropriate

balance of diet, exercise, and sleep may become more

difficult, but possibly more

important, in college. The less structured nature of

college, including greater demands on time

management and need for independence, can pose

obstacles for anyone in maintaining a routine schedule.

Many autistic people especially need and thrive on

structure, but might have sleep issues like insomnia, or

might be picky – and perhaps not the most health-

conscious – eaters, and might not get regular physical

activity. I have experienced challenges and some

success in these areas, and consider them a foundation

for taking care of one’s health needs. They may reduce

the need for formal help, but your campus’s health and

counseling centers and disability offices also may

provide support.

Sleep

I found it much easier to sleep at a consistent and

productive amount before college. Homework was

usually assigned the same day as a relevant lesson and

due the following day, so I took a break when I got

home from school and generally worked until I

completed all my assignments. School began and ended

at the same time most days, so while I sometimes slept

in on the weekend, my mind and body had become

familiar with the schedule and would collect extra rest

72 Navigating College

as needed. I also lived with my parents, who usually did

not allow me to stay up late for homework, which

added pressure for me to not procrastinate. In college,

however, classes often begin at different times across

the week and you may be expected to have more

responsibility for your schedule even if you live with

your parents (as is the case for me now in graduate

school). Assignments tend to take place on a longer

term, often several weeks or the course of the term.

Nevertheless, try to regulate sleep in college; I have found

it to be one of the most important factors in my academic

productivity and psychological well-being. I can easily

feel depressed when I oversleep and anxious or

depressed when sleep-deprived. Various autistic and

non-autistic people alike have managed to pace

themselves by scheduling their activities into time blocks

(such as on their phone or a pocket calendar). I usually

have tried to set realistic goals for what to accomplish

that same day so that I have more flexibility and reduce

the risk of sacrificing quality for time concerns. All this

becomes easier if you have a regular flow of mental,

emotional, and physical energy from sleeping well. Seek

and use accommodations for extended time as needed,

practice strategies that work for you, and make sure to

have a relaxing bedtime routine and set your alarm to a

reasonable time. I also recommend that if you live on or

near campus that you have your own room or request a

roommate who has compatible sleeping habits. I lived on

campus for all four of my undergraduate years but only

had a roommate for one semester because I woke up

from the light or sound whenever he entered the room in

the middle of the night. Therefore you may need sensory

self-accommodations such as earphones or a sleep mask.

Health and Safety 73

DIET

Also remember to drink and eat well. Many students

consume caffeinated beverages or energy drinks, but

should monitor their intake so they do not disrupt

sleep, or cause or contribute to mood swings or medical

concerns. A cup or two of coffee or similar caffeinated

beverages a day is fine, and is better than extremes of

drinking nothing to too much, which I have

experienced. Unfortunately, because of anxiety,

busyness, and not planning or making decisions well, I

developed a bad habit in college of staying up extremely

late to write an essay or study for an exam. This

required a lot of caffeine, which made me more nervous

and could take days to recover from (such as a strong

headache). Many people also cannot perform well

academically under those conditions.

Moreover, if you choose to drink alcohol, please do so

safely (know what you are drinking, have a safe

amount, do not drink and drive, and so on) and legally

(at least age 21). You may find a non-alcoholic drink

available, and if there is none or you face relentless peer

pressure, you might consider removing yourself from

the situation. Drinking to fit in may not be a smart idea,

and for autistic people drinking may have the opposite

effect.

Alcohol often reduces people’s judgment, so after

drinking your more natural, socially unusual behaviors

may stand out more. Therefore, although many people

drink to fit in, drinking might make you more likely to

get socially rejected and ultimately feel more self-

conscious.

74 Navigating College

Similarly, having a reasonably healthy or balanced diet

can promote a stable, good mood and good physical

health. I had an extremely limited diet when I arrived at

college, but cafeteria-style campus dining offers such a

variety of choices that I felt comfortable. Since it was

all-you-can-eat, it allowed me a safe environment to try

new foods. Having an unlimited meal plan that

restricted me to the dining halls also allowed me to

better pace my meals into more and smaller sittings for

better metabolism, or a more even pace of energy. This

dining choice requires self-discipline but allows diverse

eaters healthy choices, and does not require the skills of

making one’s own food. Eating at restaurants, which

may be on campus, may be convenient or tasty, but not

as healthy. You might stop by or look online to check the

menu, for both general nutrition and preparing in

advance in case you go with others and wish to decide

on your meal more quickly. Another choice is to bring

food from home, which I have done in graduate school

when the cafeterias have not been as accessible.

EXERCISE

My best period of mental and physical health during

adolescence and young adulthood (so far) took place

when, and largely because, I had a progressive exercise

routine, so I highly recommend a physically active

lifestyle that has some structure. I have always been

clumsy and uncoordinated; growing up I was one of the

last students to get chosen in physical education, and I

had little physical activity outside of school. I had never

worked out in a gym until college, but gyms have many

options for a wide variety of interests and abilities.

Many, if not most, colleges have a gym, and your tuition

may entirely or at least mostly cover its price so

Health and Safety 75

exercising there might be an affordable habit. It also

might be a convenient choice, especially for students

who live on or near campus, and have a variety of hours

that can work with your schedule. Nevertheless, it is a

good idea to find out the hours of operation and when

the parts of it of interest to you are less likely to be busy

so you can plan accordingly.

Again, there are many options for working out.

Cardiovascular exercise using treadmills and the

elliptical, or simply walking or running, may leave a

relaxing feeling and may lower blood pressure since it

works the heart and lungs. Weight training equipment

works the muscles and may improve strength and

toning, but as with any exercise make sure that you do

not overstrain yourself; it is safer, as I do and

recommend, to use machines rather than free weights

that require balance and good techniques.

Exercise in general may improve flexibility,

coordination, energy and endurance, memory,

attention, sleep, relaxation, metabolism, appearance,

and weight. The body also might release hormones

called endorphins that improve mood, which you may

be able to feel during exercise and long afterward. For

me and many others exercise has acted as a natural

antidepressant, but it requires commitment – and

increased intensity for better results – that many people

struggle to maintain.

Try not to be too hard on yourself if you encounter

challenges in establishing, continuing, or progressing an

exercise regimen – I still have not created one in

graduate school despite some success at times as an

undergraduate – but you might have many choices for

how to get active. Perhaps taking an optional physical

76 Navigating College

education class (not necessarily for a grade – your

choice) would help you learn how to exercise and help

you keep a schedule. I took a weight training class, and

without it I do not know if I would have had the courage

to begin using related equipment. Many colleges offer

group recreation classes (such as dance or yoga); they

looked too overstimulating from a sensory and social

standpoint to me, but you might find it a good

opportunity to learn from an instructor, keep a routine

(notice a theme?), and make a workout partner or

friend. If you need additional help, your college might

offer personal trainers that you might have to pay, an

option I never tried; you could more likely find one at a

private gym if interested too.

HYGIENE AND GROOMING

Despite the importance of sleep, diet, and exercise to

health promotion, they may have a less direct social

effect than cosmetic or superficial habits. While many

people in general do not sleep, eat, and exercise well

and such a healthy lifestyle requires extensive time and

commitment, people might only give off indirect direct

signs of these efforts (such as tiredness or their weight).

Yet not taking a moment to brush one’s hair might be

more likely to affect others’ impressions of you and

possibly contribute to rejection; they might think that

you do not take care of yourself so they assume that you

will not respect them, when you simply forget or did

not think that aspect of appearance mattered. Some

activities like brushing teeth do directly impact health

in important ways as well as social presentation

(better-looking teeth and better-smelling breath). Other

matters of hygiene, grooming, and other acts of self-

care, however, relate only to making people comfortable

Health and Safety 77

or yourself look good, such as shaving regularly; putting

on deodorant; and wearing clean, unwrinkled clothes

that fit the context (such as level of formality).

THERAPY

Exercising flexibility and self-discipline in response to

life’s challenges are generally difficult skills, and you

might seek professional help to cope and adapt in a way

that works for you. I have focused mainly on what you

can do to help yourself on your own or with unofficial

assistance, because they reflect general lifestyle habits,

some of which may be relatively available, convenient,

or affordable. Formal options like therapy may also

prove useful to you, and you may wish to think about

them more carefully because they may vary more

depending on your personal abilities and needs.

Through the campus counseling center, disability office,

or privately you can see an individual therapist. You

may have limited options through your college, such as

a small number of sessions or providers, but having

therapy through your school might be convenient or

less expensive (maybe even covered by tuition). Good

therapists understand, respect, and communicate well

with their clients with useful feedback. I do not think

they need expertise in or experience working with

autistic people, since they need to see you as an

individual and you might think their ideas about the

autism spectrum do not relate to you.

On the other hand, having a therapist with some

background in autism or experience working with

autistic people might help you since many autistic

people may not benefit from common types of therapy.

For example, people receiving psychotherapy often

must build a personal relationship with their therapist

78 Navigating College

based on somewhat free-flowing interactions about

their emotions. If you have such a therapist, he or she

might expect you to initiate or lead these dynamic

conversations; you may wish to request a modification

if possible and if you find this approach exhausting or

confusing. Traditional psychodynamic therapists may

relate some of your challenges to your family

upbringing, which I have found emotionally difficult

and not constructive, especially when I have lived with

my parents and wish to maintain a respectful

relationship with them.

Instead, other methods like cognitive-behavioral

therapy and mindfulness- based stress reduction might

offer more advantages to you. Cognitive- behavioral

therapy might help teach you practical skills to make

sense of your thoughts and emotions so you can

function more independently, rather than focusing

narrowly on feeling good in the short term or trying to

become “normal”. It offers logic and structure with

which many autistic people thrive. As another option,

mindfulness may help you attend to the moment and

become more open-minded about and accepting of your

thoughts, feelings, and sensations. This approach may

particularly help self-regulation in autistic people who

have ruminative or repetitive thoughts that cause

distress, or who may find it helpful to cope with sensory

overload. For example, I sometimes think more

critically and analytically than I would like, and

mindfulness might help soothe someone like me with a

non-judgmental attitude, rather than actively attacking

and facing irrational thoughts as cognitive-behavioral

therapy encourages.

Health and Safety 79

Your college might offer support groups in addition to

individual therapy. The opportunity to make

connections with similar others may improve self

understanding through dialogue about others’

experiences. You might form friendships with others

you meet in the group, and ideally the group will help

you develop skills to improve relationships with people

in other contexts. Well-run groups do not tolerate pity

or disrespect, although you may sense a negative tone

from sessions, such as other people’s stories, that might

overwhelm you. If you become involved in therapy but

it seems unhelpful, you might consider waiting before

making a decision because progress may take time

after a difficult beginning, but you reserve the right to

end therapy.

MEDICATION

Psychotropic medication is an individual choice that

some autistic people make to manage anxiety,

depression, or other disabilities. Medications vary in

their class (the types of actions they perform), and

within each class in intensity, effectiveness, specific

functions, or side effects. I recommend informing

yourself about possible benefits and costs as much as

possible, from doing your own “research” (for example,

looking up information online, asking trusted people

you know who have personal experience with related

conditions or medications, and asking relevant

professionals such as psychiatrists, other medical

doctors, or pharmacists). All medications potentially

carry side effects, so it is important to know about the

range of effects they can have. Similarly, understand

your right to refuse medication (except in some

circumstances in which a medical professional declares

80 Navigating College

you dangerous, which happens too often because of

misunderstandings).

You also reserve the right to receive a lower dosage

than, or to suggest a different medication from, what

your doctor recommends. This may especially be

helpful for autistic people, since many of us are

particularly sensitive to medication, both in terms of

needing smaller amounts to have effective results and

having more or stronger side effects than many people

at higher levels, and no medication has federal approval

for specific use with autistic adults. This simply means

that many doctors are not well educated about which

medications may help autistic people, but it is possible

that medications that have helped others with similar

needs as you may benefit you as well. For example,

some autistic people successfully use antidepressants

like SSRIs to elevate their mood.

The timing of medication poses additional

considerations. If you decide to begin or discontinue

psychotropic medication in consultation with your

doctor, it may help to do so at a relatively ordinary time

rather than one of increased transition or stress in case

you react sensitively, at least briefly, to the change.

Depending on your circumstances and under

professional supervision, you may choose to use

multiple medications simultaneously (perhaps for

different purposes), or medication in combination with

psychotherapy or other tools or strategies to improve

your mental health, and it may be wise to add or

remove these different components separately so you

can better identify the effect of each decision.

I hope you find these suggestions empowering. My

mother pressured me to use medication to treat

Health and Safety 81

depression late in high school beginning before I

became a legal adult, and a psychiatrist in graduate

school pressured me to use a dose of a medication

outside my comfort zone, so I hope the knowledge of

your rights and responsibilities to make your own

decisions will ensure that you have a better experience,

whatever choices you make.

OTHER MEDICAL CARE

As an adult, you may undertake more responsibility

about your general physical health and schedule your

own medical appointments, such as undergoing the

recommended annual physical examination. Again,

attending to your health may be more convenient and

possibly less expensive if done on campus. Many

campuses have a health center and require students to

carry health insurance. I suggest you compare the cost

and benefits of your current health insurance plan and

insurance your college offers, if applicable, and choose

the plan that works best for you. I also recommend that

you record the phone number and hours of the health

center and know the procedures and resources

available in case of an emergency.

Health and Safety 83

1.11 Mental Health

Mental Health

Leah Jane Grantham

Mental health is a difficult issue for me to talk about. I

hardly feel like an expert on the subject, since I continue

to work towards resolving my own issues with mental

health. However, compared to when I first began

college, I feel I’ve developed a much stronger grasp on

how to manage difficulties that may arise from mental

health issues, and it is my hope that this can serve as a

guide for those who also need to consider the

challenges to mental health going to college can

present.

Being a neuro-atypical college student is difficult to

begin with. In my case, high school was a trying

experience, after dealing with bullies, issues with

anxiety, and a multitude of other issues. If I could go

back in time, I would have considered the option of

taking a year off of schooling altogether, to collect my

thoughts and mentally prepare myself for the

challenges of college.

Taking a year off is a luxury many people cannot

consider, but if there is a possibility for you, after

graduating from high school, obtaining a GED or

equivalent, it’s worth considering. The time can be

spent either pursuing a hobby, contacting a local

business to see if they offer part-time jobs in a field that

interests you, or, if you feel prepared and have a passion

for it, volunteering. When I was close to finishing high

school, I had a job working at a horse stable. I had

minimal contact with people, and could focus all of my

energy on interacting with the animals, which proved to

84 Navigating College

be great company. Looking back, I wish I had taken

some more time to work at the stable. It proved to be

the most helpful thing towards managing my troubles

in high school, and functioned essentially as a form of

therapy for me during a very difficult time. I can’t

imagine what a rewarding experience it would have

been if I had been able to do my work at the ranch

without having to deal with high school. It would have

given me a “breather” in colloquial terms, allowing me

time to rejuvenate in preparation for college.

Once I actually got to college, the greatest difficulties I

faced were related to social issues. I had little difficulty

interacting with my professors; I’ve always gotten along

easier with adults than with people in my own age

bracket. But my fellow classmates posed a challenge for

me, the rules appeared to be much more intricate and

dependent upon presumed mutually understood social

mores than in high school. It also took on a new, subtler

level of bullying which proved to be more

psychologically devastating than what I had

experienced in high school.

After a particularly nasty incident of being bullied and

belittled by classmates, I suffered a panic attack, which

left me on anti-anxiety medications. Even with the

medication, I still suffered from panic attacks, to the

point where I was fearful that I would have to seek a

medical withdrawal from college. Nothing in my mind

would have been more devastating than to admit defeat

after working so hard to get accepted as a candidate for

higher education. The medicine was the type that was

to be taken upon the onset of the attack. It was up to me

to find out what was causing them, and take

preventative measures.

Health and Safety 85

I decided it would be best if I sought the university’s

health center for advice on how to protect myself from

these attacks. They had a counseling and psychological

services, but none of the counselors had any experience

treating an autistic patient. Faced with a Sophie’s choice

of either getting no treatment at all, or going to a cost-

prohibitive specialist located outside the city limits, I

vowed I would be the one to educate my therapist. In

my case, this turned out to be the best option. My

therapist was open minded, kind, and more than willing

to listen to my side of the story. I feel like she looked

forward to our Tuesday appointments as much as I did.

Sometimes though, choosing this method can backfire.

After similar issues with mental health, my partner, also

autistic, decided to use the university’s counseling

program. However, at my partner’s university, there

was a “peer counseling” program instead of one with

bona fide counselors. The counseling student assigned

to my partner was dismissive of the idea that autism

existed in adults, voicing the opinion that autism was

mainly concocted by pharmaceutical companies to hock

pills at an unsuspecting public. Needless to say, my

partner was forced to seek a private practice to deal

with mental health issues. It’s a gamble, but if you find

you have a good rapport with a counselor, or if they are

familiar with autism and display a willingness to listen

to you, it’s worth considering talking with them.

Sadly, my classmates were not the only source of

bullying I encountered. Unfortunately, professors,

bosses, and administrators are just as capable and quick

to bully and belittle people as 20something college

students are. In my case, someone who had a

considerable amount of power over my life humiliated

86 Navigating College

and harassed me, and the toll it had on my mental

health was incredibly negative. I found a way to remove

myself from this person’s influence my senior year, but

the three previous years proved to be difficult to cope

with because of the abuse I was facing. I was too

frightened and unaware of my rights to know I could

stop the bullying by informing human resources or the

university’s advocates.

I felt trapped. I needed the job badly, but I was feeling

my life and my grades spiral down. After I found the

courage to finally leave my job, I faced criticism from

people for not staying with my job, during a time when

many went without work, and was accused of being

“lazy”, “irresponsible” and “entitled”. If you are faced

with similar rhetoric in a situation like mine, it is best to

explain, either through a letter, or through whatever

communication you find most comfortable, that to leave

a job where you are being belittled and abused is not

cowardice. It takes great bravery to do what is best for

your own mental health. Any situation which is

detrimental to your mental health should be treated the

same, if you have the chance to walk away from it, do

so.

But after I quit, the negative impact didn’t go away. I

still had nightmares and anxiety troubles related to my

job. I never confronted the person bullying me about

the illegality and general terribleness of their behavior

because the thought of confronting them made me

terrified, to the point where I would start crying. The

unfortunate thing about the way one’s mind works is

that, if you have been bullied and abused before, you

can often end up frightened and unable to confront a

new source of bullying, because the fear of

Health and Safety 87

confrontation is ingrained into you. That was certainly

my case. Now, it is too late for me to confront that

person, but it is not too late for me to stop my

nightmares and trauma over the experience. I have a

new therapist now, who has experience with Autistic

adults, and I am working on ensuring that I have some

closure about what happened to me at work, and

working on building up the mental tools necessary to

ensure it doesn’t happen to me again.

All in all, college, like any new experience, is going to be

filled with new sources of mental health issues and

troubles. This is unavoidable. But if you prepare

yourself, email the health center of the university, your

doctor, or another professional, preferably one who

knows you whom you have a good rapport with, your

mental health can be managed before anything comes

up which could force you into a situation which would

be inconvenient or unhealthy for you. Nothing should

force you out of college, when the suffering that often

accompanies mental health

trouble

can

avoided

or dealt with on your own

terms.

Health and Safety 89

1.12 Safety

Safety

Samantha April Davis

I, like many other Autistic people, have difficulty

judging the intent of others. Condescension can feel like

approval. Patronization can feel like respect. It can

become difficult to know when and who to trust.

Especially now that I am an adult in college I feel that

this has placed me in a certain position of vulnerability.

Protecting myself is not always an easy thing to do. I

have not always been successful.

I have found some things that I am able to do which I

feel help to protect me. I try to avoid paranoia—as

difficult as that may be—and, as such, I do my best to

follow rules which I do not feel interfere with my life.

The following make me feel safer:

I avoid risky behavior such as intoxication or seclusion

with those whom I have not known for at least a month

or two, no matter how I feel emotionally about them. I

find that my emotional barometer is much more

accurate once I have settled into a relationship with

someone than when I have just met them.

I watch how people treat others around them,

especially what they say about others when they are

not around.

People who treat others cruelly will likely treat me

cruelly, even if right now they are treating me well. If

they express bigoted ideas about others then they will

likely hold bigoted ideas towards me.

I listen to those people in my life who have been loyal

to me for a long time.

90 Navigating College

One of the hardest parts about safety, for me, is

realizing that I come from an abused and bullied past.

When you are used to being bullied and excluded

having someone who shows affection, whatever that

affection may be, can be intoxicating and irresistible.

Moving into an environment where I find myself

treated humanely causes difficulty with friendships and

boundaries. Everyone feels like a good friend because

what you had become used to as friendship is what you

should have been able to expect from everyone.

I have to keep track the length of a friendship to

determine whether a person is a true friend or not.

Because I have such difficulty with trust and affection I

often can’t tell the difference emotionally between

someone who feels a strong relationship with me and

someone who merely likes me around sometimes so I

must use this instead to help gauge how strong our

relationship is. Also, sometimes I ask what they think of

our friendship.

Finally, I understand that everything is a risk. A life

lived without risk is a life lived with out experience,

discovery, and richness. Understand what you are

doing. Understand the reality of the risk you place

yourself under.

When you can accept that risk: College is a wonderful,

new world and it would be a shame to miss out.

Advocacy 91

4. Advocacy

1.13 Advocacy

Advocacy

Leah Jane Grantham

When I first came to college, the best way to describe

myself would have been, “directionless”. I was uncertain

about much of my life; I was undecided on a major,

going from Journalism to Japanese to Asian Studies,

undecided on a vocation post-college, and on what I

wanted out of my college experience. All I knew is that I

came to college because I had an almost fanatical love of

learning, reading, and discourse, and I wished to

participate in it as much as humanly possible.

I had taken Japanese in high school, and had an interest

in continuing these studies, but was unsure what I

could gain from it, apart from the pleasure of learning a

new language and watching Princess Mononoke without

the subtitles on. In a moment of spirited curiosity, I

emailed the head of the Japanese department, who has

grown to be a mentor and guide in life since coming to

UM, and asked her about my options. She told me about

the numerous fields open to me, such as security,

governmental work, academics, and other such

endeavors. Truthfully though, I still felt floating and

listless, and wondered if I would end up in life as a

hapless post-doc, devoted to research but never rising

to the occasion.

Along with this career advice, she gave me a book that

changed my life: David Suzuki and Keibo Oiwa’s The

Other Japan: Voices from Beyond the Mainstream. It was

a book detailing the experiences of ethnic minorities in

Japan, and it opened my eyes to the great injustices

92 Navigating College

faced by those who did not fit in or conform, an

experience I could strongly relate to. Stories about the

horrors of institutionalized discrimination, ignorant

prejudice, and the damnation of dismissive attitudes

were the catalyst that launched me out of my banal

student’s existence. I devoted myself to my studies,

hoping to one day undo the injustices I had until

recently been ignorant to. I delved into books like Our

Land Was A Forest: An Ainu Memoir, and Multiethnic

Japan to educate myself.

Reading such books gave me a vision for my future that

was crystallizing: I would do all in my power to work

towards an egalitarian future, a future where

environmental stewardship and freedom for all was

expected, not hoped for. I expected more from my

future. It would be a long ways away before I could

apply this knowledge to the field though. I was devoted

to causes overseas, but remained oblivious to the sad

discriminatory practices and horrors right outside my

own door.

That remained the norm until I was invited to

participate in a pilot project on violence against people

with disabilities. It was on this project that I learned

some grim and unacceptable truths about the lives of

people with disabilities in Montana. Stories of

unspeakable pain, abuse, humiliation, and exclusion,

leaving people with disabilities vulnerable and unable

to live their lives to the fullest, or even at bare

minimum. It all came to a head upon the discovery that

at a local high school, a young autistic boy had been

forced to drop out due to the bullying of his classmates.

It added to the pain of stories I already knew, such as a

good autistic friend of mine being bullied until he

Advocacy 93

sustained permanent hair loss from the stress of the

experience. “What,” I said to myself, “Is the good of me

working towards a brighter future for the people of

Japan, when I can’t even manage to help people like me,

whose experiences, disabilities, and troubles are my

own?”

At that point, I couldn’t even help myself. I was

experiencing bullying as well, not from my age-mates,

but from my elders, people who I worked with whom I

thought were supposed to respect me, but used their

positions of power over me to berate and upset me to

tears on a regular basis. After four years of contending

with such conduct, I ended up leaving the workplace

where it was occurring, and it was there that I found the

greatest group for honing my activism: The Alliance for

Disability and Students on my campus. I became their

secretary, since they were in need of a work study.

Around the same time, I began working on a blog. I felt

it was necessary to combat stereotypes about the

helplessness and futility of living with autism by

showing the world my life with autism.

Along with my work on the Pilot Project, my blog and

my work with ADSUM (Alliance for Disability and

Students at the University of Montana) proved to be

humbling and character-building experiences. I learned

a lot about my own strengths, limitations, and false

assumptions.

Disability advocacy is probably the single best area for

an autistic person to engage in advocacy at first. You

will learn a lot not only about what to do when faced

with a difficult situation or a close-minded person

yourself, but you will learn about the experiences and

problems faced by other people with various other

94 Navigating College

disabilities. Personally, I found it empowering to bond

with people of other disabilities and share stories about

how people perceived us based on our disabilities. It

was heartening, but also provided much laughter and

many new friends, especially because people with other

disabilities were willing to accept behavior which other

people charitably thought of as idiosyncrasies or “tics”

at best, or “weird habits” or “freak rituals” at worse.

But there is another area of advocacy that is not often

considered; that within your special interest, like me

with my passion for Asian Law. Your special interest can

take on a form of advocacy, if you are a creative thinker

and can come up with ways to turn your interests into

social justice. One of my autistic friends does this by

taking her interest in geography and geology to work on

local watershed projects, urban demonstration

(Sustainable living) projects, and environmentalism.

Another uses a passion for poetry to write poems about

human rights. It not only strengthens you as a disabled

person to fight for your rights and the rights of others,

it’s a way of giving a great gift to future autistic adults.

You are providing them with a path to follow which was

previously unavailable or not visible from their vantage

point.

Advocacy 95

1.14

Ableism Awareness

Amanda Vivian

“Sometimes you have to lie but to

yourself you must always tell the

truth.”

- Harriet the Spy

There’s a lot of talk about “autism awareness,” but most

people I know are aware that autism exists. A lot of

people don’t even know the word ableism or have an

understanding of the concept. (Ableism means

discrimination on the basis of disability.) Of course, just

because someone isn’t aware of something doesn’t

mean they can’t support it. Ableism can be unconscious

and invisible. It’s kind of like how homophobia and

transphobia can lead to prejudice against people who

don’t conform to gender stereotypes, whether or not a

person is labeled as gay or trans. The prevalence of

ableism in our society means that certain qualities and

behaviors are stigmatized without anyone really

thinking about why.

Well, this is all very interesting, but what does it have to

do with college? Everything. Ableism Awareness may

not relate to college specifically, but it has everything to

do with growing up with an invisible disability.

What is an Invisible Disability?

Some people would say that some disabilities are

invisible and other disabilities are visible, and this is an

objective difference between kinds of disabilities. But I

would say that most disabilities could be seen if the

person doing the seeing naturally expects that some of

96 Navigating College

the people they meet will have disabilities. You might

not know everything about the disability, but you can

often see if someone has trouble doing certain things,

has chronic physical or emotional pain, or is different in

some other way.

There are a few things that are heavily associated with

disability in the public imagination, such as being in a

wheelchair or not being able to speak. But someone

who is not aware of issues of disability will probably

misjudge wheelchair users and nonspeaking people just

as they misjudge the disabled people whom they

perceive as non-disabled. The fact that they perceive

some of these people as disabled and some of them as

non- disabled doesn’t mean that they are seeing any of

these people as they really are. (For example, a lot of

people make assumptions about the awareness of

people who cannot talk.)

The truth is, though, that just as people don’t really see

the disability of someone who they read as disabled,

they don’t really not see the disability of someone who

they read as non-disabled. Certain qualities are

stigmatized because they are common qualities for a

disabled person to have; so, a disabled person ends up

being stigmatized for having those qualities, without

anyone consciously thinking, “That person is disabled.”

Also, the prevalence of ableism leads to narrow ideas

about what abilities, feelings, and experiences it is

possible for a person to have; this type of narrow-

mindedness can also be seen as ableist, and affects

disabled people negatively whether they are perceived

as disabled or not.

Advocacy 97

So maybe instead of saying that some Autistic people

grow up with invisible disabilities, it’s better to say that

all Autistic people grow up with invisible ableism.

What about the type of disability that people mean when

they say “visible disability?”

I can’t write as well about the experiences of Autistic

people who are always perceived as disabled, for

example people who don’t speak. This isn’t what I know

firsthand. I would guess that in some cases, “visibly

disabled” Autistic people might be more aware of

experiencing ableism than “invisibly disabled” Autistic

people are. But a lot of the time, when someone

experiences ableism and complains about it, other

people will tell them that the way they were treated

was only natural and that if it wasn’t intended to be

cruel, it isn’t a problem. No matter what their

disability—or the details of the ableism occurring—the

person experiencing ableism can end up feeling like

what happened is simply ordinary, and is what

someone with a disability will inherently have to face.

This can lead to self-hatred and a tendency to blame

harmless features of the disability for other people’s

behavior.

What can you do?

In a movie where the villain is a ghost, sometimes the

characters have to get special glasses that enable them

to see ghosts. In your life, the villain is ableism (well

there are probably other villains because life is not a

movie, but ableism is the villain we’re discussing right

now). You’ll have to make your own special glasses for

seeing ableism, so you can identify when it is the source

of a problem.

98 Navigating College

I can’t possibly cover all the problems ableism can

cause, since I fortunately have not experienced every

single one. But I will try to describe some problems my

Autistic friends and I have experienced growing up, to

give you an idea. These problems can be caused by

internalized ableism (ableist ideas that a disabled

person holds against herself or again other disabled

people) or external ableism (ableist ideas that non-

disabled people hold against disabled people). Or both.

Ableism can make you see neutral aspects of yourself as

character flaws.

If I tried to write down all the examples of this I could

think of, I would probably break my computer. But one

example is that I used to be upset about the fact that I

run around. When I’m thinking about something that

makes me happy or upset, if I’m sitting down, I get up

and start leaping around and flapping my hands. If I’m

walking somewhere, I just start running and leaping

instead of walking. Because of the suddenness, the style

of running, and the fact that I’m not wearing exercise

clothes, it’s pretty obvious that I’m not going for a jog.

Something unusual is happening, and like lots of people

who move in unusual ways I have been made fun of

because I run around.

I used to try not to run around in public places, but I

would have the experience that I would unconsciously

think of empty places (like parts of campus where I

didn’t see anyone, or empty stairwells and halls) as

places where it was okay to run. I would start running.

Then I would notice someone was there, or someone

would come out of a room. I would immediately stop

running and feel like they knew something

incriminating about me.

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I would also experience the feeling that someone had

“caught” me, or knew something embarrassing about

me, whenever anyone saw me moving in a way that

might look different. This covered stimming, other

repetitive movements, or walking differently from other

people. When I was going to meet up with a friend, I

always tried to set things up so that when they first saw

me I would be sitting down and they’d have to walk

towards me, instead of watching me walk towards

them.

When I started college I had known that I had ASD for

about five years, and I knew intellectually that a lot of

the movements I made were common for people with

ASD; but I still saw them as embarrassing flaws in my

character.

I began to feel differently when I started making more

friends who were disabled and started thinking and

writing about the ableism I saw around me. I realized

that since I’m Autistic, there’s nothing embarrassing or

even notable about the fact that I might move

differently, and that moving in the way that comes

naturally can be a way of expressing disability pride.

This is just one example of a way that internalized

ableism can affect someone. I have a friend who

sometimes can’t process what people are saying, and

because he grew up thinking this was an

embarrassment, he instinctively plays along and

pretends to understand what’s going on, which

snowballs until he understands less and less. You can

shortchange yourself and other people by trying to hide

impairments, because it’s hard to fully participate when

you are doing that.

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Ableism can make you act like a cartoon character.

A lot of the people I know who have developmental or

psychiatric disabilities have had a habit of trying to act

really cute and funny in order to cover for being

different, or for needing help and support in situations

where a non-disabled person wouldn’t need help. A lot

of the time, people take something about themselves

that is actually real- like being confused by sarcasm, or

having severe anxiety- and emphasize it as much as

possible to try to turn it into a joke and earn affection

and tolerance from others.

I don’t want to sound critical of people who do this. It’s

actually a pretty smart defense mechanism because it

can keep you from getting stigmatized for things you

would otherwise get stigmatized for. But there’s a

difference between doing this on purpose to protect

yourself, and getting really locked into an exaggerated

persona because it seems more dignified to be a

cartoon character than to be disabled.

When I used to act like a cartoon character, I remember

having very strange standards about when it was

appropriate to be stimmy in front of another person or

to need them to talk for me. If I was always nice and

funny to someone, then it was okay for them to see that

I was different and it was okay for them to help me. If I

ever got in a fight with a friend or acted selfish to them,

then I would feel very embarrassed if they saw me

stimming because I felt I didn’t act well enough to make

up for being different. For me, the cartoon character

thing was a problem where I felt like I had to earn the

right to be different. It has been really exciting for me to

realize that I don’t have to apologize for my

impairments and differences, or use them to amuse

Advocacy 101

people. I actually feel closer with my friends and

communicate better now.

If someone is in a really ableist environment, they may

decide that they’re going to try to be as charming and

funny as possible to avoid being stigmatized for being

disabled. Any choice that you make to survive is fine, as

long as it doesn’t hurt anyone. But I think it’s important

to be aware of the choice you’re making and why you’re

making it, so you don’t trick yourself into thinking that

you’re disguising who you are because who you are is

actually wrong.

I also know some people who made friends by

“performing” weirdness in a cute happy way, only to

find that their friends found them undesirable when

they could no longer keep it together and became less

adorable and more in need of support. It’s worth

thinking about the kind of relationships you end up in

when you are being a cartoon character, and whether

they are deep enough to make up for the performance

you put into them.

Ableism can cause the belief that there’s only one set of

abilities, feelings, and experiences that a person can have.

This belief affects the way disabled people are treated,

especially disabled people who are perceived as non-

disabled. For example, a lot of children with sensory

problems are told that they’re misbehaving and being

rude when loud noises, crowds, or tight clothes upset

them. A person wouldn’t be considered rude if they got

upset because their leg was broken, but non- disabled

people don’t believe that sensory issues can be truly

painful and uncomfortable. Also, sometimes non-

Autistic people try to tell Autistic people what they’re

102 Navigating College

feeling, because the Autistic person’s “body language”

doesn’t match up, in the non-Autistic person’s opinion,

with the emotion that the Autistic person claims to be

feeling.

Disabled people can also be accused of lying when they

don’t have abilities that non-disabled people expect

them to have. For example, if a person can read very

complicated books, non-disabled people might assume

she is “smart enough” to know when someone’s feelings

are hurt, or figure out a complex response to a setback

like missing the bus. Non-disabled people can treat you

with contempt if you can’t do something they believe

you should be able to do, because they think that you’re

lying and being lazy.

When someone is making statements about your

feelings or abilities, the first thing to do is realize that

their statements might come from ableism, rather than

being accurate conclusions based on their observations

of you. You don’t have to accept that someone who calls

you rude, oversensitive, lazy, dishonest, etc., is actually

right.

If you realize that someone is being ableist and making

unfair assumptions about you, you could try to point

out that they’re wrong. You could explain, using

examples from your life, that you consistently have a

certain reaction to loud noises, or that you find it hard

to do certain things. You could tell them about your

disability.

Of course, this doesn’t always work. Some people will

just take your attempts to explain as further proof of

how rude, oversensitive, lazy, and dishonest you are. All

Advocacy 103

you can do is remember that their judgments don’t have

anything to do with you and aren’t your fault.

One of the worst things that happens when a disabled

person is used to having non-disabled people argue

with them about their experiences, feelings, and

abilities is that the person begins to believe that they

are not the authority on their own experience, and that

if they think they’re having a certain feeling or can’t do

a certain task, they’re just lying to themselves and

should keep going. This kind of internalized ableism is

really dangerous, because it can lead to a person

ignoring the fact that they’re sick, tired, or upset and

refusing to seek help or even take a break from

something stressful.

Ableism can cause the belief in “mental age.”

Some people have a strong idea of how a person of a

certain age should talk, move, dress, think, and feel. If

someone doesn’t meet their standards (and often

disabled people don’t), they think that the person

deserves to be treated like someone who’s younger than

they actually are. A lot of the time, if they perceive you

as being “mentally” younger than your real age, these

people will think that you’re immature and try to do

things for you or think that you can’t make your own

decisions or know what you’re talking about.

This belief has historically had tragic consequences. For

example, disabled people have been sterilized and/or

kept from having sex, because they were considered to

have the “mental age” of a child and therefore not to be

qualified to have sex. I don’t mean to imply that

everyone who patronizes someone who comes off as

“young for her age” is doing something as evil as this,

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but it is interesting to think about how prevalent this

belief is and the different results it can have on how

“young-seeming” people are treated.

Ableism can cause people to treat you badly because they

sense or have been informed that you are disabled.

So far I’ve mostly been talking about how people might

treat you when they don’t think of you as disabled. But

obviously, people can treat you badly when they do

think of you as disabled.

Some things they might do are:

1. Assume that you don’t understand the complexity of

what people are saying, and not take your opinions

seriously as a result, or try to “explain” to you how

you should feel about things. This is a common thing

to do to Autistic people because of the stereotype

that we don’t understand other people’s points of

view.

2. Call you ableist insults like the r-word; street

harassment; bullying in class or at parties, etc.

3. Assume not only that you don’t understand complex

statements, but also that you don’t understand

anything that’s being said at all. (This often happens

to people who are non-speaking.)

4. Believe that it’s not appropriate for someone like you

to be interested in having sex or a relationship.

5. Believe that they don’t have to treat you as

respectfully as they would treat their other friends,

because you are too naive, or too desperate for

acceptance, to know the difference. This can also

happen in romantic and sexual relationships.

Advocacy 105

I obviously haven’t listed all the ableist things someone

could possibly do. It’s also the case that some of these

things are worse than others and you might have

different reactions to different things on the list. If a

friend is talking down to you or explaining everything to

you, you might choose to remain friends to them and try

to ignore their behavior or educate them on what is

wrong with it. If a sexual partner is abusing you because

they think that you won’t be able to tell what they’re

doing is wrong, you would probably want to end the

relationship.

You can’t always just stand up to someone and tell him

or her to change his or her behavior. Obviously,

sometimes you can. For example, if someone is your

friend, you could have a talk with him or her about how

they need to respect your feelings as being real, even if

your feelings don’t make sense to them. This might

make them understand their behavior in a new way, and

see that the way they were acting was wrong.

Some people will not respond well to this. Even if

they’re supposed to be your friend, they might not

respect what you have to say, and will just get annoyed

(or patronizing) and deny that they did anything wrong.

When this happens, you’ll have to figure out if you want

to be friends with a person who behaves this way, and

you might conclude that you don’t.

In other cases, the person who is being ableist is not

your friend. For example, if a stranger is yelling at you

on the street about the way you walk, it’s not that likely

that you’re going to be able to talk to them and get them

to change their behavior, and it might be dangerous to

try. An acquaintance might talk to you in a patronizing

way, and you don’t really know them well

106 Navigating College

enough to have a talk with them about why their

behavior is wrong. In these cases, all you can really do to

protect yourself is to try to avoid the person, and try to

understand that what’s happening isn’t your fault.

I don’t mean to imply that stopping other people’s

ableism isn’t important. But one of the biggest things

that ableism goggles can give you is the ability to accept

parts of yourself that you saw as unacceptable because

you associated them with disability.

Advocacy 107

1.15

Professors

Samantha April Davis

Two years ago my brain changed. I stopped being able

to control my motor impulses. I started to convulse and

shudder. My voice began to make noises, even bark. It

was difficult to pay attention in class, even more

difficult to take a test. I needed help, yet, because of the

newness of my condition I had never been diagnosed

and had no paperwork to turn into the disability office.

They told me they couldn’t help me.

I turned to my

professors. They

knew me. They could

see the difficulties

that I was trying to

navigate. They knew I

needed help. When I

approached them

they worked with me

and found ways in

which I could be accommodated, including finding me

private rooms in which I could take my tests. All

without having to work through the disability office,

which finally offered me official accommodations right

before finals. Truth is, I don’t have my autism registered

with the disability office either.

How am I able to get professors to work with me? I

make sure they know me. I engage them and speak

with them at every opportunity. I communicate my

needs, even when my needs are not strictly disability

related. I make sure they notice me and I work hard.

108 Navigating College

Approaching a professor can often be a very nerve

wracking ordeal. Even many neurotypical students feel

anxiety in a professor’s office. One thing that helps me

greatly is that I make a habit of talking to a given

professor at least once a week, usually for a minute or

two after class. Once I get into this routine it starts to

become normal and, like many things in my life, it gains

certain inertia. After years of doing this I have gotten to

the point where it is significantly easier to approach a

professor. It is still nerve-wracking when I need help or

an accommodation but—where it would have been

impossible before—it is now something I am able to

handle.

Others might have

trouble speaking to

professors at all. Yet,

with the importance

of face-to-face contact

with a professor it is

very unwise to avoid

contact entirely.

Fortunately, interactions between yourself and your

professor are under no requirement to be normative in

any way. Writing a note and then handing it to the

professor when you approach them during their office

or after class and waiting for them to read it is a very

good way of handling the stress of having to speak

while at the same time communicating with them and

giving the professor ample opportunity to learn who

you are. Consider explaining on your first note why you

are communicating in this way. The professor will

remember you and will appreciate that you take your

Advocacy 109

education seriously enough to overcome the barriers

required to communicate with them.

Do not use email to get to know your professor. Email

does have its place such as when you need to

communicate something quickly with a professor

whom you already know or when it is important and

you need to reduce the risk of executive function failure.

Nonetheless, professors and other faculty tend to

receive at least 20 to 30 emails every single day. They

may get your message but they will not remember your

name, much less associate your name with your face

and who you are as an individual. If you must

communicate via written communication, hand deliver

a note in an envelope from your hand to the professor’s

hand. An unusual envelope, such as one with graphics,

one with an unusual color, or one with a wax seal will

stand out and will prime their memory as to who gave

them the letter when they go to open it. Never rely on a

professor remembering your name.

Do not wait until you have a pressing concern before

seeing your professor! When you do need help things

can get very stressful. In fact, asking for

accommodations for a disability can be a highly

embarrassing or even humiliating experience for many.

It is important to know how to ask. Firstly, it is not

always important to frame all your needs as

accessibility issues, even when they are. This does not

mean that the professor cannot know you are disabled

merely that you do not always refer to the disability

when you are asking for accommodations. Even though

autism affects your needs many of the things that are

needed because of your neurotype are also similar to

things which neurotypicals need. Because your

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professor is likely neurotypical, or at least likely

identifies as such, framing your request in a way they

can identify with will help them understand that you

are in legitimate need. When your needs are radically

different, it may require framing with regards to autism

but it never hurts to try first. You can always tell them

why you need it if questioned. You are, like many other

students, a student who sometimes struggles and

sometimes needs help from their professors. The

reasons why you may need this help and exactly what

kind of help you need may vary slightly but the

principle remains the same. Professors are used to this.

They understand that students need help and, the vast

majority of the time, they want to provide you with that

help. Especially when they understand your dedication

and situation they will be very willing to give you

whatever support is reasonable and required for your

success. After all, your professor had to complete

college, too, and understands that sometimes,

neurotypical or not, students need a bit of help.

Advocacy 111

1.16 Discussing Disability with Friends and in Class

Discussing Disability with Friends and in Class

Amanda Vivian

So you’re in your psychology class, and this week you’re

studying autism. The professor starts off by asking,

“Does anyone have a family member with autism?”

You wonder, does “self” count as a family member?

Or your friend comes back from Thanksgiving, which

they spent with their disabled cousin. “I was

uncomfortable. Handicapped people kind of freak me

out.”

Awkward Turtle

A lot of college students

like to make a hand

gesture called “awkward

turtle” to express

discomfort in awkward

situations. It’s the

obvious response when

someone starts talking

about disability as

though there are no disabled people in the room. You

put your hands on top of each other and wiggle your

thumbs back and forth. It’s supposed to look like a

turtle swimming around.

Making an awkward turtle under the table can make

you feel better when someone says something like this,

but you might find yourself wanting to say a bit more.

If your friend makes a comment about disability that

you don’t agree with or that you think is offensive, it can

be challenging to figure out how to respond. The

112 Navigating College

challenge is doubled when the other person either

doesn’t know that you’re Autistic, or knows but “doesn’t

think of you that way.” Now you have not one but two

tasks:

a. figure out how to express your disagreement, and

b. disclose (or remind) that you are Autistic.

Reminding People That You Are Autistic

A lot of people feel anxious when delivering a coming

out speech (“There’s something important you should

know about me. I’m Autistic”). A coming out speech can

also cause the conversation to feel very serious, and can

be a hindrance if you were hoping to casually make a

point and then move on.

However, sometimes the person you’re talking to knows

the parts but not the whole. They may know that you

have a certain history or diagnosis, but they haven’t

made the connection that you consider yourself

disabled or Autistic.

That makes the situation a little easier. Instead of telling

them totally new information, you’re reminding them of

something they’ve heard before. Often you can make

your point just by inserting “I’m Autistic” or “I’m

disabled” into your opinion, as if you are just restating

something that you’re sure they already understand.

One thing to be aware of is that some people may

correct you because they perceive words like “disabled”

as negative, and think that you are “putting yourself

down” by using the word. So be prepared to explain

that for you, the word is just a description, and you are

not insulting yourself by using it. (Some people may tell

you that you “aren’t Autistic” or “aren’t disabled” as a

Advocacy 113

way of trying to win an argument. These people are

jerks and you don’t have to respond when they say

those things.)

Fake-Reminding

If you find it fairly easy and comfortable to remind

someone that you’re Autistic, and fairly difficult to make

a coming out speech about being Autistic, you may want

to adopt the practice of “fake-reminding.” This is when

you’re talking to someone who doesn’t know you’re

Autistic, but you casually mention it as if you think they

already know. This isn’t lying because it doesn’t affect

the content of what you’re saying; it just makes it easier

to say.

The problem with coming out speeches, besides the fact

that they can make you nervous, is that you often feel

like you have to share your whole personal and medical

history in order to explain your identity. If you assume

someone already knows, you can be much more brief;

and if the person is really curious about trivia like when

you were diagnosed, they have to be the one to bring it

up.

Another advantage of stating your identity concisely is

that you seem more secure in that identity. So the

person you’re talking to is a little less likely to think you

are anxious and try to comfort you with, “You’re not

really disabled, stop putting yourself down!”

Even when you are really coming out, it’s often less

awkward for everyone if you can relate it to the topic at

hand instead of making what you’re saying the new

topic of conversation. However, be aware that all these

methods of disclosure have a drawback that is the same

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as the benefit—because they are not dramatic, they can

go right over some people’s heads.

Coming Out Noisly

There are some people who are so closed off to the idea

that they could be talking to someone who has a

disability, especially a disability as stigmatized as

autism, that they won’t pick up on you mentioning that

you have it.

Subsets of people exist who literally don’t hear perfectly

clear coming-out statements, or reconfigure them in

their heads as a different sentence. For example, they

might hear the sentence, “I have autism,” as “I’ve

worked with kids who have autism.” (Real example.)

When this happens, it’s pretty confusing for the person

who’s trying to come out. You made references. When

that didn’t work, you screwed up your courage and said

something very unambiguous. But the other person still

doesn’t understand the basic idea of what you are

saying.

What can you do?

If you think that the person isn’t taking in what you’re

saying, you can always say it again, and ask them to

repeat back to you what they think you’re saying. You

could also ask them what they think of what you said so

you can counter any doubts they have about you being

Autistic (for example, some people seem to get confused

and think that someone who’s Autistic can’t have

friends or look anyone in the eye).

Being this aggressive about making sure someone

knows you’re Autistic can be stressful for some people,

because it can bring up insecurities many Autistic

Advocacy 115

people have about talking too much, being repetitive,

over

explaining things, or not knowing what other people

are thinking. If this kind of conversation would make

you anxious, another idea is to write the person an

email, Facebook message, or letter explaining that

you’re Autistic. It’s a bit harder for someone to ignore

what you’re saying if they’re reading it instead of

hearing it.

If Things Go Badly With A Friend

If you tell your friend that they offended you or made

you feel invisible, this can turn into a fight. Your friend

may cry or become angry and say that you’re being too

politically correct or that you’re being mean to them.

Some people get upset

when their behavior or

opinions are criticized,

no matter how polite the

person criticizing them

was. So don’t assume just

because your friend is

upset that you did

something wrong. Maybe you could summarize the

conversation to another friend and ask if they think you

were being too harsh. It helps if this other friend is

someone who understands and is tolerant of your

feelings about disability, so that they aren’t confused or

biased by the content of the conversation. If you end up

feeling that you were being mean, you may want to

apologize for the way you expressed your opinions,

though not your opinions themselves.

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A conflict that is based on your identity, and your and

your friend’s values, can be hard to dissect afterward.

The surface conflict—your and your friend’s different

opinions about disability—get mixed in with a lot of

other things, like whether you or your friend was being

mean, your and your friend’s emotional states during

the conversation, your personal investment as a

disabled person, and conflicts that you and your friend

have had about other things. Even if you come to the

conclusion that you weren’t mean to your friend, you

might still feel like you have caused a problem by calling

your friend out on something that offended you.

Things may change. Your friend may become more

accepting of your point of view, or even come to share

it. But this may not happen; disability may become an

issue that causes a conflict whenever you and your

friend talk about it.

If you have a friend who says things that upset you, and

you learn that you can’t talk to them about it without

having a fight, you will have to decide what that means

for your friendship. Many people are friends with

someone who acts or thinks in a way that they disagree

with. Other people are bothered by being friends with

someone whose views they find offensive, but will put

up with it if they’ve been friends for a long time or have

a lot of mutual friends.

But this might not be the case for you. You might end up

feeling that it’s not worth it to be friends with someone

who has said what this person said. You might not get a

choice, either, if the person is mad enough at you for

calling them out; they might decide to stop being

friends with you. If you lose a friend due to speaking up

about disability, it’s important that you understand it

Advocacy 117

isn’t your fault. You have no responsibility to keep quiet

when someone who’s supposed to care about you is

insulting a group that you belong to.

In Class

So far I have talked about how to discuss these issues

with a friend or acquaintance in an informal setting. But

you may also have cause to discuss them in class, and

by sharing a perspective that is often ignored you can

make a difference to how your classmates think about

disability and autism.

Talking about disability in class can be easier than

talking about it to friends, because usually you don’t

know the people in your class very well. But it’s harder

for the same reason. The environment is also a bit more

structured and formal—you’re often expected to

express your opinion in one or two comments, instead

of being able to say more things as you think of them.

This can be easier for some people and harder for

others.

Do’s And Don’ts

(suggestions, not hard and fast rules)

DO know what you’re getting into. No one is a bad

person if they decide that they don’t want to talk about

their beliefs, or their personal disability experience, in

front of the entire class. If talking about this is going to

make you so nervous that you have a shutdown or a

panic attack, then don’t feel obligated to do it. Also,

think about whether you’re taking risks that are safe to

take. For example, if you want to tell your professor

that they said something offensive, consider whether

118 Navigating College

the professor is likely to get angry, and how important

your grade in the class is.

DO talk about how you feel. For example, instead of

saying, “It’s wrong for you to say that autism is a

tragedy,” you could say, “As someone who has autism, I

don’t really agree with the use of the word tragedy—

things can be really hard, but I don’t consider my life a

tragedy. To me tragedy implies a situation that’s

completely bleak, but for me, and really for anyone with

a disability, just because things are hard doesn’t mean

that there won’t be things you can enjoy about life or

things you’ll be able to do.” By talking about your

feelings, you can express a very similar opinion while

making it sound less like an attack. Also, if your opinion

is something your classmates and professor haven’t

heard before, you can make it easier for them to relate

to.

DO try to stay on topic. If you just straight out say,

“Excuse me, this is offensive,” people are more likely to

be angry and perceive you as “having an agenda.” A lot

of the time, you can stick to the general tone of the

conversation while still expressing yourself. For

example, if you read a book for a literature class that

you think is ableist, you could bring up the poor

treatment of disability as something that detracts from

the quality of the book, or you could discuss ableism as

a theme in the book. Something that’s kind of cool about

this approach is that it treats the disabled/anti-ableist

point of view as just another point of view that can be

discussed—which can help normalize disability and

dissolve the “no disabled people in the room”

assumption.

Advocacy 119

DO indicate that you’re not alone. Many people are not

aware of Autistic self- advocacy or disability rights in

general, so the views you express may seem really

strange. Your classmates and professors may think that

you’re talking without thinking or trying to be

outrageous. So it can help to say, “A lot of people in the

disability community say...” or “My Autistic friends and I

think...” While people still may disagree with you, they

will understand that you’ve thought about these issues

before and you’re not the only one who has your beliefs.

DON’T necessarily feel that you have to say you’re

disabled or Autistic. Obviously, in some cases it helps

support what you’re saying, but other times you can

make your point without mentioning your identity. The

reverse is also true:

DON’T feel that you have to start arguing or stating

opinions, when just disclosing makes the point well

enough. If your professor asks, “Does anyone have a

family member with autism?” and you reply, “I have

autism and so does my best friend,” this shows what

was wrong with your professor’s question.

DON’T feel obligated to answer personal questions. If

someone responds to your admission that you’re

Autistic by asking for examples of what your disability

is like, this may make you uncomfortable or be a

confusing question to answer. Also, some people may

derail the conversation by arguing with you about your

examples. So if someone starts asking you questions

like this, feel free to say that it makes you

uncomfortable and you don’t think it’s relevant.

120 Navigating College

DON’T let people make you feel bad with responses

like, “This is obviously an emotional subject for you,” or,

“You seem to have a personal investment.” Sometimes

people will say things like this as a way of implying that

your opinion is biased. But having a personal

investment just means that you’ve probably thought

and learned a lot about the issues you’re discussing,

which makes you more qualified to talk about them, not

less.

DON’T feel guilty that your behavior might fit into

stereotypes about Autistic people, like changing the

conversation to your favorite topic, or being insensitive

to other people’s views. Don’t get me wrong—there’s

value in noticing when stereotypes could hurt you. But

there’s a difference between being aware of potential

discrimination, and actually being mad at yourself

because you said something that someone could

interpret that way. Non-Autistic people don’t have to

think, “Oh no, I was acting so non- Autistic,” because

they shot down someone’s opinion or went on and on

about the same thing. You should have the same right.

No Disclosure

So far, these suggestions have been aimed at a reader

who is willing to come out as Autistic, if it’s necessary

and they can find a comfortable way to do so. Of course,

you may not be such a reader. You may have decided

that you don’t want anyone at college to know you’re

Autistic.

There are drawbacks to keeping this kind of secret, but

you’re the only person who can judge whether it is the

right decision for you. I hope that some of the tactics I

listed are ones that you can still use, or adapt for

Advocacy 121

yourself, without coming out. One thing that sometimes

works is to talk about the experiences of a (real or

imaginary) Autistic friend. Also, in some situations you

can share your opinion without having to talk about

anyone’s personal experience.

Good luck.

Social Life 123

5. Social Life

1.2 Social Activities

Social Activities

Steven Kapp

Colleges offer many social opportunities. They generally

have student organizations, with up to several hundred

to choose from depending on the size of the college, and

the option to start your own. You may be able to find a

list of student organizations online or in a student

government office on campus. You might also meet

people promoting their organizations at specially

designated events like freshman orientation or during

the beginning of the term, or perhaps see people

standing or sitting at a table outside at other points

advertising their organization.

I suggest joining at least one organization and

determining what you think of the members and

activities and how it fits your schedule before deciding

whether to drop it or add others. I probably became too

involved in my first semester in college before I had

time to adjust to the transition, joining the marching

band, student newspaper, building government of my

dorm, and a religious organization. Also, the band and

building government did not provide a good fit because

I had no background or particular interest in music or

student government. I had unrealistic ambitions about

making the most of the college experience, since no one

can do everything; we should do what makes sense for

us.

For that matter, you should not do anything illegal or

against your will, even if most students do the activity

124 Navigating College

or you think they do, such as drinking alcohol or

smoking recreational drugs. You are free to decide not

to go to parties as well, especially if they are in

students’ rooms or houses (rather than, for example, a

public building on campus). Parties can be loud and

overstimulating, and might have peer pressure, wild,

and illegal activities.

Student organizations vary widely in level of

commitment and type. One type you might consider is

service organizations in which you help people or the

environment in the community, because they offer a

good chance to improve your surroundings in a

possibly structured way, while allowing you a social –

and perhaps physical – outlet. One community service

organization I joined enabled me to co-teach mini-

courses in schools in the local underprivileged area.

Another, my college’s chapter of Best Buddies

International, paired me in a one-to-one relationship

with a student with an intellectual disability; I hung out

with him when I visited his school and participated in

group events with other Best Buddies members. These

experiences helped prepare me, and helped me decide,

to join a PhD program in education to help other

autistics and people with disabilities. I also gained

leadership experience as a student officer in

organizations like Best Buddies, which, like some of the

organizations themselves, may feel more like a side

project or work you enjoy than a social activity.

You also might enjoy campus events. You might go with

a peer or group you met in class or a student

organization. Going alone can be fun too and may be

easier, for example if others have schedule conflicts or if

planning would take too long. I went by myself many

Social Life 125

times and sometimes had conversations and became

acquainted with others nearby. Your college might have

artistic and cultural events like plays and concerts,

entertainment such as sports games, or open lectures

by visitors.

Despite all these opportunities, you might feel that

other students, faculty, or staff do not give you the

respect or support you or others with disabilities

deserve; you might decide to become actively involved

in self-advocacy beyond getting personal

accommodations or services. Those services, and

disability awareness and attitudes, vary at different

colleges. Generally, although colleges are often

relatively progressive and promote civil rights for other

groups, they are less likely to embrace people with

disabilities as making up a minority group. Disabilities

like autism often carry stigma so students with

disabilities may not self-disclose to get the

understanding, acceptance, and support we need.

Fortunately, I found out in my sophomore year that the

neurodiversity and disability rights movements

encourage the self-empowerment of and social justice

for people with disabilities. In my sophomore year I

tried to work with the director of student programming

to create a student administration on disability, but she

said it would first need student disability organizations.

Sadly my college, although it is the second largest

private university in the United States, had no student

organization for its own students with disabilities. In

my junior year I started a student organization about

autism, and had about as many panelists (mainly

autistic students from other colleges) as attendees, or

about six people. Hardly anyone helped me with the

126 Navigating College

organization’s founding or event, so after planning,

publicizing, and coordinating the panel, I realized I had

too much work as one person. Thankfully, in my senior

year I spoke with a candidate for student government

vice president about the need for a Disability

Awareness Week, and this eventually led to a

wheelchair basketball event in my final semester. The

following year, the college had its first annual Disability

Awareness Week.

The message I take from this is that autistic or disability

self-advocacy helps to advance our rights and does

important work but can require a great commitment

and skills as a student leader that you might not have

when you start college. If your college already has a

group like the Autistic Self Advocacy Network, you can

become active without needing to lead right away. In

general though, self-advocacy requires networking and

communication skills that can be difficult. Nevertheless,

they can help you advocate on behalf of others so that

they can build adaptive skills

and

have a higher

quality of

life.

Social Life 127

1.17 Social Issues

Social Issues

Alexander Eveleth

A large part of your experience at college will be

interacting with your fellow students in a variety of

situations. Cooperating with studying or work for

classes is one example, as are mealtimes and campus

clubs or organizations. You can’t get through college

without having a lot of interactions with other students.

But that doesn’t have to be a problem. I’m focusing here

on my own personal experience, based on going from

high school to college and knowing nobody at the new

campus.

Interacting with peers is often one of the difficult bits in

high school (you’ll note that it’s hard for everybody,

even non-autistic people), but college is a clean slate.

Generally speaking, high school doesn’t follow you

when you leave it—thankfully—which gives you all

kinds of new opportunities. I’m not saying to go

overboard and totally reinvent yourself (I remember

reading about a guy who found himself faced with

explaining to his new girlfriend that he was not, as he

had been claiming, Australian, and in fact hailed from

suburban New Jersey), but colleges are big enough that

none of the more unpleasant aspects of high school

need to follow you between campuses. In college, much

more so than high school, it’s possible, and even easy, to

fin

d a circle of people you share interests with.

That said, don’t be afraid to branch out past your

traditional zone of interests. Join clubs and

organizations you find interesting—you’ll discover a lot

of people to spend some time with.

128 Navigating College

And of course, if you really do find yourself more

comfortable in the library with a stack of books than

you do eating lunch with a table of people, do that.

Living on your own often equals freedom to choose

your leisure and stick to the things you enjoy.

But even if you do decide to make the library your

home away from home and spend more time with your

books and laptop than with other students (and there

can be a bright future in academic or professional life

for you) you’ll have to spend at least some time

interacting with others. Especially since the end of high

school doesn’t mean the end of group work and class

projects.

Overall, and I know this is far easier said than done,

you’ll find yourself happiest, socially, when you stop

worrying.

When I came to college, I was determined that it would

be a fresh start after being an awkward kid in high

school. So all through freshman year, I was always

worrying about how I was doing socially—was I being

awkward? Were there things I was missing socially?

What did I need to do better when I was talking to

people?

But worrying about things isn’t really going to make it

any better. And, if you’re in my age group (coming into

college from high school, at seventeen or eighteen years

old) you’re going to find yourself at a really important

junction in your life, one that’s going to make a lot of

difference for you based on how it all works out.

Working off of my own experience, I want to give some

advice on the problem of showing up to college and

feeling really awkward.

Social Life 129

Let’s be frank: for me, there were very few redeeming

features of elementary through high school, especially

compared to college. There were plenty of times when

life before college just wasn’t fun at all.

College doesn’t have to be that. It’s big enough and new

enough that almost nobody will know you there. Every

time you meet somebody your first day at college it’s a

first impression, starting anew. At an important time in

your life, you control how people see you. If you’re

worried about being awkward socially, this is your time

to undo that.

A big part of any transition is finding yourself—figuring

out who you are and what you’re like. This takes time,

and it takes experience, and exposure to a lot of new

things, which college is great for. And figuring that out is

how, in my experience, to stop worrying about fitting in

socially. You won’t be perfect. But if you’re comfortable

with being yourself, you’ll be less nervous, about social

problems and merely in general. Once you start getting

a grip on who you are—and you may find it very

different from what you thought you were like while

you were in high school—the trick to not being nervous

about yourself is to just be yourself.

Not everyone is going to like you. And nobody can really

make everybody like him or herself, even if they’re the

most charming person in the world. Businesspeople

spend millions each year on books and training

seminars geared towards making other people like

them. There’s a whole science to first impressions,

covering everything from what side of someone to

stand on when talking so that they’re more receptive to

what you’re saying (it’s their left) to the precise

duration of a handshake (one, one thousand). When

130 Navigating College

Dale Carnegie came out with How To Win Friends and

Influence People in 1937 it sold like hotcakes. But, if

nothing else, people respect confidence. Be confident

about being yourself, and you won’t need to worry.

When I got to college at the beginning of my freshman

year, I was nervous about how people were going to see

me. But I was going to a place where nobody knew who

I was—I was in control of making good impressions.

Not everything went my way, but I made sure I learned

when it didn’t.

At the end of that year, I moved out of the dorms and

into a house with four friends, all people I’d met there

that year at college. That summer, my family went to

Europe. One afternoon in August I was walking down

the street in Munich when it started to pour on me. I

ducked into the

fir

st place I could, a nearby beer garden,

to see if I could wait out the rain before heading back to

my hostel.

I ended up spending the next four hours at that beer

garden, learning the names of everybody there—it

turned out one of the regulars was celebrating his

birthday—and, despite the language barrier, several

people bought me rounds of drinks. And there was

nothing to worry about.

There comes a point where you have to stop worrying

and, for better or worse, be yourself. Self-confidence is,

itself, the biggest improvement you can make if you’re

concerned about your social life. And it will come with

time. Being you and being confident about that, more

than anything else, is the mark of social success.

Index 131

6. Index

ableism, 95–106

cartoon character

behavior, 100–101

defined, 95

discrimination, 103, 104

emotions, statements

about, 101–102

external, 98

internalized, 98–99, 103

mental age, belief in,

103–104

narrow set of accepted

behaviors, 101–

103

neutral aspects as

character flaws,

98–99

self-acceptance and, 106

standing up to others,

105

academic advising, 25, 42–

academic clubs, 44, 46

academic support, IDEA

and, 8

acceptance to college,

standards for, 8–9

accessible policy, 41

accommodations. see also

reasonable

accommodations

decision not to disclose,

in disability advocacy

groups, 37–38

disbelief of others, 37

equal participation

possible, 37–40

explanations to others,

20, 38–40

letters, 10, 12

making do with lack of,

negative experiences, 37

notification and

documentation,

11–14

private room, request for,

18, 32–33, 66

private room for exams,

15, 38, 107

reasonable, 10, 12–14,

21–22

regular requests, 45, 46

retroactive not allowed,

types of, 14–16

unrelated to autism, 42–

43, 109–110

activities of daily living, 27,

30, 63–64. see also

health and wellness

lists and flow charts for,

personal services for, 22

ADA/Section 504

Compliance Officer,

10, 13

adulthood, legal, 24

adults, expectations of, 24–

advanced degree, 34–35

advisors, 25, 42–43

advocacy

disability rights, 37–92–

94, 38, 125–126

132 Navigating College

against injustice, 91–94

within special interest,

91–92, 94

advocates, 36, 66

at meetings, 13, 18, 25

aides, classroom, 22

alarms and wake-up calls,

alcohol, 73, 124

alienation, 37

Alliance for Disability and

Students at the

University of

Montana (ADSUM),

all-nighters, 64

alternate environment for

education, 8, 16

alternate formats for course

materials, 15

Americans with Disabilities

Act (ADA), 8, 36

rights and responsibilities

of students under,

10–23

animals

service, 68–69

work with, 83–84

anxiety, 26, 42, 73

bullying and, 83–85

disclosure and, 112

appearance, physical, 76–

assistant/aide, 18, 22, 25,

assistive technology, 26

attention, shifts in, 15–16,

atypical movements, 98–

99, 107, 115

audio recordings, 15

auditory processing, 99

Autistic Daily Living forum,

Autistic friends, 21, 63, 92–

93, 94, 98, 119

Autistic identity, 3–4, 6,

113, 116

autistic relationships, 21

Autistic Self Advocacy

Network (ASAN), 27,

126

awkward turtle, 111–112

Axis-IV conditions, 42

barriers to

accommodations,

36–40

beanbag chairs, 68

behavior

autistic as functional, 19,

behavioral support, 8

cartoon character, 100–

101

emulating neurotypical,

19, 78, 99

functional analysis of

social, 19–21

narrow set of accepted,

101–103

right to be different, 20,

100

sensory differences and,

101

student's responsibility to

manage, 16–18

"behavior problems," 16–18

Best Buddies International,

124

Index 133

blogs, 93

body language, Autistic,

101–102

boundaries, 19–20, 90

breaks between classes, 63

Brown, Lydia, 59–62

bullying, 69, 104

in college, 83–87

effects of, 86, 90, 92–93

by faculty/college

personnel, 85–86,

in high school, 83, 84,

92–93

informing human

resources, 86

at job, 85–86, 93

psychological, 84

bureaucratic system, 41, 43

caffeine, 64, 73

calendars, 55

capability/potential, 29

cardiovascular exercise, 75

career planning, 25, 31, 91

Carnegie, Dale, 129–130

cars, pollution from, 66

cartoon character, 100–101

Centers for Independent

Living (CILs), 25, 26

Charms roommate

matching system,

61–62

chemical sensitivities, 62,

choice of college, 30–34

for autistic or learning-

disabled students,

community college, 30

cost considerations, 31

disability support office

and, 32–33

four-year college, 30–31

graduate school, 33, 34–

location, 33

personal attention, 31

standards for

acceptance, 8–9

things to consider, 31

civil rights, 125

classes/courseload, 15–16

class size, 31–32

comments in class, 17,

31, 117

disclosure in class, 117–

120

dropping classes, 45

extra classes, 44

lectures, 15, 17, 31–32

modifications, 10, 15, 78

participation, 17, 31–32

physical education, 74

research, about

classroom topics,

17, 34, 77

classmates, bullying by,

84–85

clumsiness (dyspraxia), 74

coaching, 9, 25, 57

code of student conduct,

–21

coffee houses, 69

cognitive-behavioral

therapy, 78

college process, 7

colleges, for autistic or

learning-disabled

students, 9

134 Navigating College

color-coding, 55

coming out noisily, 114–

115

coming out speech, 112–

113

comments, making in class,

17, 31, 117

communication differences,

39, 46, 107–108

ableism and, 96

handwritten notes, 108

nonspeaking/nonverbal

communication,

39, 96, 97, 104

speech, difficulty with,

39–40

community college, 30

community service

organizations, 124

complaints, Department of

Justice, 13–14

Compliance Officer, 10, 13

compliance with reasonable

accommodations

laws, 10, 12–14

computer, organization

and, 55

condescension/patronizatio

n/contempt, 89, 102,

103, 105–106

confidentiality, 12

confrontation, dislike/fear

of, 67, 86–87

contact information, 34

costs of attending college,

counseling center, on

campus, 25, 77, 85

critical thinking skills, 34

cross-disability

organizations, 37–38,

cues, misreading, 19

cultural activities, 125

culturally normative

interactions, 46, 108

daily living skills. see

activities of daily

living

Davis, Samantha April, 29,

41–47, 89–90, 107–

110

deadlines, 55

decompressing, 18

defense mechanisms, 100–

101

Department of Education,

state, 26

Department of Justice

complaints, 13–14

depression, 72, 75, 79, 80–

diet/nutrition, 67, 73–74.