Autism Speaks - Adult Autism Diagnosis Tool Kit

Adult Autism
Diagnosis
Is it autism
Tool Kit
and ififso,
so,
what next?
A guide for identifying autism in adults
A
A guide
guidefor
foradults
adults
and figuring out what comes next
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ADULT AUTISM DIAGNOSIS
Autism Speaks does not provide medical or legal advice or services. Rather, Autism Speaks provides
general information about autism as a service to the community. The information provided in this Tool Kit
is not a recommendation, referral or endorsement of any resource, therapeutic method, or service
provider and does not replace the advice of medical, legal or educational professionals. Autism Speaks
has not validated and is not responsible for any information or services provided by third parties.
You are urged to use independent judgment and request references when considering any resource
associated with the provision of services related to autism.
© 2023 Autism Speaks and the Autism Speaks Puzzle Piece are registered trademarks owned by Autism Speaks Inc. All rights reserved.
The use of these trademarks by unaffiliated representatives for endorsement, advertising, promotional, and sales materials is prohibited by law.
About This Tool Kit

This Tool Kit is designed to assist adults who have been recently diagnosed with
autism, are going through an evaluation or suspect they may have autism. The
original version was released in 2015 with a comprehensive review and update in
2023 led by a team of autistic adults, including outside contributors and Autism
Speaks staff members.
Acknowledgments
Autism Speaks would like to extend a special thanks to the following who
contributed to this tool kit:
David Beversdorf, Ph.D.
Megan Farley, Ph.D.
Elisheva Levin, Ph.D
Catherine Lord, Ph.D.
Kerry Magro, Ed.D.

Brigid Rankowski
Stephen Shore, Ed.D.
John Taylor
Lydia Wayman
Table of Contents
Introduction 1
What is Autism? 2
Definition 2
Statistics and Facts 2
Causes of Autism 2
Signs of Autism in Adults 3
Strengths and Challenges by Dr. Stephen Shore, Ed.D. 5
Diagnosis 6
Seeking a Diagnosis 6
Evaluation Process 6
What the diagnostic process looks like for adults by Dr. Catherine Lord, Ph.D. 7
Barriers to Diagnosis 8
Do You Need a Formal Diagnosis 8
What Does a Diagnosis Mean 9
From denial to acceptance: Getting diagnosed with autism at 24 by John Taylor 10
When to Seek a Second Opinion 12
The Role of Self-Identification 12
Co-occurring Conditions and Other Common Related Issues

13
Attention-deficit/hyperactivity disorder (ADHD) 13
Anxiety 13
Disrupted Sleep 14
Eating and Feeding Disorders 14
Epilepsy 14
Executive Dysfunction 14
Gastrointestinal Issues 14
Mood Disorders 14
Obsessive-Compulsive Disorder (OCD) 15
Sensory Integration Dysfunction 15
Autistic burnout: When navigating a neurotypical world becomes too much
by Brigid Rankowski and Lydia Wayman 16
Services and Supports 17

Supplemental Security Income 17
State Vocational Rehabilitation Services 17
Medicaid Waivers 18
ABLE Accounts 18
Table of Contents
Therapy
18
18
Applied Behavior Analysis
19
Cognitive Behavioral Therapy
19
Occupational Therapy
19
Social Skills Groups
Beyond autism-specific therapy: Finding the help you need by Megan Farley, Ph.D. 20
21
Rights
21
American with Disabilities Act
21
Section 503 of the Rehabilitation Act of 1973
21
Section 504 of the Rehabilitation Act of 1973
21
Enforcing Employment Law
22
Voting rights
Self-Advocacy
22
22
Communication Basics
22
Disclosure
23
Accommodations
23
School
24
Employment
24
Person-First vs. Identity-First Language
Relationships
25
25
Families
26
Parenting
26
Romantic Relationships
27
Relationship Scripts
27
Autistic Community
Autistic Perspectives
28
Conclusion
31
Glossary
32
INTRODUCTION the average age of diagnosis among those who knew

was 28. Self-described gender breakdown was: 54%
Society is much more aware of autism than it has ever female or cisgender female, 33% male or cisgender male,
been thanks to improved public health outreach, 6% non-binary, and 2% transgender. Another 5% of
increased screening, advocacy, awareness efforts and respondents didn’t provide an answer about their
media attention. While this has been great news for gender. More about the survey responses can be found
kids, there are likely many adults with autism who in the Autistic Perspectives section at the end of this
never received a diagnosis or were misdiagnosed. guide.
Over the last few years Autism Speaks Autism This Tool Kit will also walk you through services and
Response Team (ART) has heard from an increasing supports, disclosure, accommodations and critical
number of autistic adults who are seeking information, information about your rights and protections. If you
tools and resources. Autistic adults now make up over have any additional questions or need more specific
10% of constituents who reach out to us. In response, resources, the Autism Speaks Autism Response Team
we developed this Tool Kit to address what comes (ART) is here to help. ART coordinators are specially
next if: trained to support the autistic community by answering
calls, chat and emails and by providing guidance and
• You are an adult currently seeking a diagnosis or information. ART can be reached at:
were recently diagnosed with autism.
In English: [email protected] | 888-288-4762
• You are an adult who recognizes you have autistic
traits but are unsure what to do. En Español: ayuda@autismspeaks | 888-772-9050
• You were seeking counseling or support for In advance, this revision was initiated and made possible
something else as an adult, and the clinician through the work of the autistic community. Many work for
brought up autism. Autism Speaks in various capacities; others volunteered their
experiences. We know there is still more work to be done
• You recently found out that you were diagnosed and look forward to continuing the conversation. This is just
with autism in childhood, but your parents/ the beginning of what’s next.
guardians did not disclose that to you.
• Your child was diagnosed and/or is being

evaluated and you wonder about yourself.
• You are someone who loves or supports

someone who fits one of the above.
While we will explain the clinical definition, signs and

diagnosis of autism, we will also provide a glimpse into
adult life on the spectrum, supported by testimonials
from autistic adults. Among them are Autism Speaks
staff, contributors and board and advisory members.
You will also hear from a sample of autistic adults who
participated in a 25-question survey we hosted
online in March 2023. Respondents were solicited
through Autism Speaks and personal social media
accounts. We received 150 completed responses from
adults who self-selected as being over 18 years old and
either diagnosed with autism or seeking diagnosis. The
average age of the respondents was 40 years old and
1
What is Autism? To read the whole DSM-5 criteria, including severity

labels which we will not discuss in this Tool Kit, please
visit Autism Diagnosis Criteria: DSM-5.
Definition Note: This Tool Kit will not use labels to define types of
Autism, or autism spectrum disorder (ASD), refers to a autism like: Asperger syndrome, high-functioning, low-
broad range of conditions characterized by challenges functioning, mild autism, moderate autism and severe
with social skills, speech and nonverbal communication autism. Rather, we will address autism broadly across the
and repetitive behaviors. It is a lifelong condition. spectrum and supply information for a range of support
needs.
The American Psychiatric Association’s fifth edition of
its Diagnostic and Statistical Manual of Mental
Disorders (DSM-5), released in 2013, is the standard Statistics and Facts
reference that health care providers use to diagnose
According to the Centers for Disease Control, about 1 in
autism.
36 children has autism in the United States, with boys
Under the DSM-5, four distinct autism diagnoses were diagnosed four times more often than girls. Prevalence
merged into one umbrella diagnosis of autism has increased markedly over the last 20 years since
spectrum disorder (ASD). They included autistic the first study in 2000 when 1 in 150 children met the
disorder, childhood disintegrative disorder, pervasive diagnosis criteria. Autism affects all ethnic and socio-
developmental disorder-not otherwise specified economic groups.
(PDD-NOS) and Asperger syndrome. Individuals with
It wasn’t until 2020 that the CDC released its first
well-established diagnoses of these disorders prior to
adult-focused data, reporting that an estimated 2.21%
the publication of the DSM-5 are clinically referred to
of adults in the U.S. have ASD. It is now estimated that
as having the diagnosis of autism spectrum disorder
over 5.4 million adults in the United States have ASD.
now. Some people who were diagnosed prior to the
Due to inadequate services and old workplace para-
DSM-5 prefer these older terms and continue to
digms, more than half of adults with autism remain
use them.
unemployed and unenrolled in higher education in the
Per the current DSM-5, people with ASD “must show two years after high school. Nearly half of 25-year-olds
persistent deficits” in social communication and social with autism have never held a paying job.
interaction, and restricted and repetitive patterns of
behavior, interests or activities. Causes of Autism
More specifically, the DSM-5 states that people with We know that there’s no one cause of autism. Instead,
ASD must demonstrate difficulty (either in the past or research suggests that autism develops from a com-
in the present) in social-emotional reciprocity, bination of genetic and nongenetic, or environmental,
nonverbal communicative behaviors used for social influences. For instance, autism tends to run in
interaction, as well as issues in developing, main- families. But certain environmental influences may
taining and understanding relationships. In addition, further increase – or reduce – autism risk in people
they must show at least two types of repetitive who are genetically predisposed to it.
patterns of behavior including:
Some factors have been identified that increase the
• stereotyped or repetitive motor movements risk of autism including parental age, pregnancy and
• insistence on sameness or inflexible adherence birth complications, like extreme prematurity and low
to routines birth weight, multiple pregnancies (twins, triplets) and
pregnancies spaced less than one year apart. Prenatal
• highly restricted, fixated interests
vitamins containing folic acid are thought to decrease
• hyper- or hypo-reactivity to sensory input or the risk.
unusual interest in sensory aspects of the
environment
2
Scientists have conducted extensive research over the Social interactions

last two decades to determine whether there is any
“It feels like I am an observer looking in on a
link between childhood vaccinations and autism. The
conversation, occasionally interjecting, instead
results of this research are clear: Vaccines do not cause
of an active participant. I am trying to learn
autism.
how to connect with people more easily, but
it is not intuitive for me.”
Signs of Autism in Adults – Victoria, 21-year-old working professional
You may have spent your entire life not recognizing diagnosed by her therapist
the signs of autism or not realizing that some of the
Social disconnection is a common theme among the
issues and feelings you have dealt with were related
autistic adults who helped develop this Tool Kit.
to autism. But as described in the definition above, the
Respondents to our survey reported both wanting to
hallmarks of autism occur mainly in social interactions,
isolate from others and feeling isolated.
verbal and nonverbal communication and repetitive
behaviors. However, individual presentation varies Common social issues that led to this response were:
widely across these three core areas. Additionally, a
major life change, including transition in and out of • Feeling left out of social circles or not fitting in.
college, job switches or change in family status • Difficulty in interpreting what others are thinking
(marriage/divorce, birth of children, loss of parent), and feeling.
can result in a change in degree of one’s challenges. • Inability to pick up on or misunderstanding non-
It is important to note that autism also often looks verbal cues including: eye rolls, shoulder shrugs,
different in women and men. Health care providers grimaces and other facial expressions used to
have made strides in recognizing this. Still, autistic girls convey emotion.
are diagnosed at substantially lower rates than boys, • Inability to see things from another person’s
leading to a high rate of women seeking diagnosis perspective.
late in life. One reason for this is that girls and women
appear to better at masking, or camouflaging, their Communication differences
autism to fit in. “People often tell me that I talk too loud or too
“I think the gap in diagnosis comes down to the quiet, that I move my hands too much, and that
fact that girls mask better. We’re trying so hard I don’t think enough before I say things. That
just to manage and not look incompetent. In our really impacts my self-esteem and makes it hard
society, women are often seen to be less capable – to want to talk at all sometimes.”
whether they’re on the spectrum or not. Add to it – Finn R, 24-year-old actor and student
that autistic women have a different way of
interacting with the world, and you set us up to “I am frequently misunderstood by neurotypical
constantly feel like we should be doing more.” people. Info dumping is often seen as correction
when I feel like I’m just adding useful facts.
– Dr. Elisheva Levin, Ph.D, senior research scientist Sharing information, especially in my areas of
at the Center for Development and Disability in special interests, is a love language that is
the University of New Mexico School of Medicine, frequently misrepresented and disrespected.”
diagnosed with autism at age 45
– Cynthia, 53-year-old autistic parent of an
autistic child
Social and communication skills are interrelated. For

many autistic people, the ordinary give-and-take of
conversation can be difficult and even exhausting,
resulting in unsatisfying or even missed social
connections. For instance, some autistic adults carry
on monologues on a favorite subject, giving others
little chance to comment.
3
Many respondents to our survey reported needing a

high level of directness and honesty in conversation. A
common strategy among them was to revert to text or
email in order to most effectively communicate.
Repetitive behaviors
“I get hyper-focused and detail-oriented in my
interests. It often presents as over-sharing or
info-dumping and spending disproportionate
time on my interests. This is often an asset
professionally (so long as I don’t miss deadlines)
but can be obnoxious in personal interests.”
– Kaitlynn, 36-year-old, married, cisgender
woman diagnosed two years ago
Repetitive behaviors are a core characteristic of autism.

Some people with autism need to keep household or
other objects in a fixed order or place. It can prove
extremely upsetting if something or someone disrupts
the order. Many require strict consistency in their
environment and daily routine. Slight changes can be
exceedingly stressful and lead to anger and frustration.
Repetitive behaviors can also take the form of intense

preoccupations or obsessions. These extreme interests
can seem unusual to others either for their content
(e.g. machines, certain collectibles) or depth of knowl-
edge (e.g. knowing and repeating astonishingly
detailed information about astronomy). But these
interests can have an incredible positive impact on
quality of life. Sometimes they can even be harnessed
into opportunities for employment.
4
Strengths and Challenges

by Dr. Stephen Shore, Ed.D., self advocate, author and
assistant professor at Adelphi University
While some signs of autism may present challenges, others can be great strengths and
advantages for people on the spectrum. Consider this general list of strengths and challenges
for those with autism. For every strength and challenge, you will often find examples in people
that prove the opposite. For example, clumsiness is a common challenge. However, some with
autism have significant strengths in movement and balance, perhaps as a dancer.
STRENGTHS CHALLENGES
Attention to detail Grasping the big picture
Often highly skilled in a particular area Uneven set of skills
Deep study resulting in encyclopedic Difficulty developing motivation to study

knowledge on areas of interest areas of non-interest
Tendency to be logical (helpful in decision-

Difficulty perceiving emotional state of others
making where emotions may interfere)
Less concern for what others may think of

Difficulty perceiving unwritten rules of social
them (can be a strength and a challenge), also
interaction, but can learn these rules through
known as independent thinking. Often results
direct instruction and social narratives such as
in novel “big picture” insights due to different
Power Cards (Gagnon, 2004)
ways of looking at things, ideas and concepts.
Usually visual processing (thinking in pictures Difficulty processing in non-favorite

or video) modalities such as aural, kinesthetic, etc.
Often very verbal (propensity for giving

Difficulty parsing out and summarizing
detailed descriptions may be useful in
important information for a conversation
providing directions to lost persons)
Sensory integration problems where input

Direct communication may register unevenly, distorted and difficulty
in screening out background noise
Loyalty Generalization of skills and concepts
Difficulty in expressing empathy in ways that

Honesty
others expect or understand
5
DIAGNOSIS Evaluation Process

An autism evaluation typically consists of multiple
Seeking a Diagnosis appointments with a clinician. Unlike many healthcare
The only way to know for sure if you are autistic is to visits, you won’t be asked to change into a gown or go
get a formal diagnosis. The gold standard to obtain through any scans or blood draws. Instead, you will talk
one is by a psychologist, psychiatrist or similar trained with the clinician, do activities and be asked to fill out a
clinician (example: neurologist or neurological couple of questionnaires. A few common: Autism
psychologist) who specializes in ASD and makes an Diagnostic Observation Schedule-2 (ADOS), Autism
evaluation based on the DSM-5 criteria. Diagnostic Interview-Revised (ADI-R), and Social
Communication Questionnaire, among others.
“Currently, there are relatively few clinicians who
specialize in evaluating and treating adults with autism. Over one or more visits the clinician will ask questions
Nor do we have established criteria to objectively judge to learn about your childhood and present-day life. For
such qualifications,” per David Beversdorf, Ph.D. and perspective, they may also want to interview a parent/
neurologist at the University of Missouri’s Thompson guardian or partner who knows you well. You might
Center for Autism and Neurodevelopemental be asked to attend multiple visits over multiple days in
Disabilities. order for the clinician to really get to know you. This
process can seem like a lot, but it is important for an
While these specialists will take self-referrals, a referral accurate diagnosis. If you’re nervous, you can ask to
from your primary care physician could help speed have a support person come to the appointments
up the process. So, it could be beneficial to start by with you.
making an appointment with their office. You should
expect your doctor will want to rule out other Beyond conversational interviews, clinicians will do
conditions or uncover conditions that commonly activity-based testing involving questions and puzzles
co-occur with autism. More in the Co-occuring to examine your behavior and communication. These
Conditions section below. But know that this is a sign may be done in a different room than where you first
of a thorough evaluation. met, to see you in a different setting. The goal is to get a
better understanding of your social and communication
An added benefit to starting with a primary care skills, sensory awareness and any repetitive behaviors.
physician is that they can give you a recommendation During these activities clinicians will also assess things
for a specialist to conduct an evaluation. like your attention, memory, processing speed, reason-
ing, problem-solving and personality. Like a primary care
Otherwise, Dr. Beversdorf suggests contacting a
physician, they will be ruling out other conditions and
clinician who typically evaluates children for autism,
checking for common co-occurring conditions.
like a developmental pediatrician, child psychiatrist
or pediatric neurologist and asking if they are open
to seeing older patients. If not, they might be able to
recommend a colleague who is qualified to evaluate
an adult. You can also check with a respected autism
center in your area, like those you can find in Autism
Speaks Autism Care Network, search by your zip code in
Autism Speaks Resource Guide, reach out to the Autism
Speaks Autism Response Team or ask your insurance
provider.
6
Provider Perspective:
What the diagnostic process looks like for adults
By Dr. Catherine Lord, Ph.D., clinical psychologist, George Tarjan distinguished
professor of psychiatry in the David Geffen School of Medicine at UCLA and
Autism Speaks Medical and Science Advisory Committee member
Typically, we begin the process by meeting the adult virtually and talking to them about what
they are looking for and why they want the assessment. Then, if the adult is comfortable with it,
we get information from someone who knew them when they were a child. That is very useful
because autism is a developmental disorder, so we are looking for something that has always
been there but may not have caused difficulty until later in life.
Then, we do a 3-hour assessment face-to-face. With kids, we’re often looking at language delays
and intellectual disability, but that’s less the case with adults. For adults, we do some standard
cognitive tasks to see the person in action, because so many of the issues that come up for
autistic adults are related to executive functioning and making judgments. For example, we
recently saw a 30-year-old young man who has a degree in physics. We did a test where we
asked him to define certain words and he was incredibly good, but he had a hard time knowing
when to stop. He’d get started on a definition and go on for 10 minutes, not realizing that what
we really needed is one sentence.
Then, we do an Autism Diagnostic Observation Schedule (ADOS) assessment. The ADOS isn’t
perfect – certainly, it can miss people. The smarter you are, the more likely you are to get
missed, whether you’re 14 or 40. But it allows us to do a series of tasks designed to create
contexts in which many people with autism have some difficulty.
Lastly, we do a social-emotional functioning interview. It’s nothing fancy – we ask simple ques-
tions like where you work, how you got your job, what you like, what’s challenging for you, how
you met your friends, what you look for in a friend, etc. We also do an adaptive behavior scale
to measure independent living skills: Do you do laundry? Do you go to the grocery store? Who
takes care of ordinary functions in life for you? We also may screen for depression, anxiety and
ADHD – the most common co-occurring conditions that accompany autism.
7
A formal diagnosis will come with a written evaluation Do You Need a Formal
that will include which autism criteria you meet,
perhaps even a level of diagnosis as defined in the Diagnosis?
DSM-5, other diagnosis and suggested supports. This You may be wondering if you need a formal autism
is an important medical document which you should diagnosis, especially if you have lived without one for
store in a safe place. You should also make copies for many years.
your primary care physician, other medical providers,
and if necessary, your school or employer. You may One reason to pursue one is that an adult with a formal
also need these documents if you seek benefits or diagnosis could be eligible for supports, services and
services from state, federal and other public agencies. protection under the Americans with Disabilities Act (ADA).
The act spells out specific rights, including the right to
Note: Some states require health care providers who reasonable accommodations at work and school and
provide a diagnosis to report it to their state Department protection against discrimination based on difficulties
of Health. It is typically for gathering statistics and funding associated with autism. A diagnosis could also lead to
reasons. Your provider must tell you if this is the case. state-provided vocational support services. This can
include vocational rehabilitation programs that provide
Barriers to Diagnosis counseling and job placement services for people with
disabilities, including autism.
Not everyone is able or ready to pursue an autism
diagnosis. Among the top barriers is cost. Evaluations “You’re still the same person, but a diagnosis might
can be expensive. For perspective, at Dr. Lord’s clinic make it easier to be gentle and more understanding
at UCLA, an assessment costs around $5,000 to $6,000 with yourself.”
which is on the high side. Constituents have reported – Lisa C., 34-year-old working professional with autism
to us that an evaluation can run around $2,000.
Though Dr. Lord accepts insurance, many psycholo- An official diagnosis can also help answer questions
gists and psychiatrists with independent practices do you may have had about yourself and your behavior for
not. It is always best to call your insurance company in many years. For some, it is simply a relief to know that
advance and work with them to maximize your these behaviors can now be explained with the diagno-
coverage. To help with cost, many clinicians and/or sis. It can help you focus on your strengths and work
their related practice will offer sliding scale payments. around your challenges.
You should always ask.
Ultimately it is up to you to determine if you need a
Another major barrier is time. The process often formal diagnosis. Even if a therapist or your primary
requires several long appointments, as Dr. Lord care physician brings up autism as a possibility, you are
explains above. Waits for an appointment can be long, under no obligation to pursue one. But you should
too. Also, since there are still too few clinicians evaluate your life circumstances and your support
experienced at diagnosing adults, distance can prove needs. Here are some things to consider.
an issue for many.
You may want a formal diagnosis if:
If it seems impossible to get an evaluation with a
• You need a specific type of therapy or other service
qualified clinician, there may be other options. Check
that is only offered to those with a current autism
with your primary care doctor or a qualified mental
diagnosis.
health provider to see if they can provide a diagnosis
based on their knowledge of you and your history. • You want to access disability services and legal
protections offered through the federal government
or your state and are without another diagnosis that
allows you to access them.
• Your source of funding for services – health
insurance, grants or government programs – is
limited to people with autism.
8
You may not need a diagnosis at this time if:

• You are already receiving or able to access the
support you need, such as mental health counseling
or Social Security Disability, based on another
mental health or medical diagnosis.
• You have a strong network of natural supports, like
a good social group.
• You are mainly interested in connecting with other
autistic people.
• You wonder if a diagnosis may not be helpful. For
example, if you plan to enlist in the military, a formal
diagnosis could result in increased hurdles to join. If
you are divorcing or ending a relationship with the
parent of your children, a new diagnosis could
complicate custody issues.
What Does a Diagnosis Mean?

“It’s always good to know what you’re made up
of. It helps guide and understand how you react
and interact.”
– Simon, 46-year-old working professional
diagnosed 2 years ago
Because every autistic person is different, a diagnosis

can mean many different things. For instance, it could
come as a life-changing revelation. You might feel
relieved to know why you always felt different from
your peers or validated that your challenges are not
personal failures. You might feel like there are other
people who understand you for the first time in your
life. You might even feel a sense of freedom, like you
can finally unmask and live as your authentic self.
Or, you could feel angry for all the years you were
misunderstood and unsupported. Perhaps you fear
losing your identity and being treated as a label instead
of an individual. You could also feel overwhelmed as
you try to figure out what kind of support you need
and how to get it.
You might feel a combination of positive and negative
emotions, either all at the same or in waves. Over time,
these settle down, and you will find that your diagnosis
serves a purpose. It is like an arrow, pointing you
toward information, resources and services that are
designed for the unique strengths and challenges of
autistic people.
9
From denial to acceptance:

Getting diagnosed with autism at 24
John Taylor, Autism Speaks database coordinator
One day my father showed my mother a magazine feature he read about Asperger syndrome and said
something like, “Doesn’t this remind you of John?” She agreed and talked to me about it. Together we went
to Seaver Autism Center at Mt. Sinai Hospital in New York. After a series of tests, they diagnosed me with
autism at the age of 24.
My autistic traits have been front and center all my life. Growing up I struggled socially. But three things
really define me: splinter skills; special interests; and literal interpretation of language.
Splinter skills: From 4th to 6th grade, I was the geography bee champion at school. However, my knowl-
edge of geography was quite lopsided towards the large scale. My small-scale geographical knowledge, like
with counties and US states, was lacking. I wouldn’t have been able to tell you much about my local area or
where my town was in relation to other towns. Some call this lopsidedness a “splinter skill.”
Special interests: When I get interested in something, my life centers around it and I want to learn
everything about it. Trains were one of them.
I got into trains and model railroads in lower elementary school. If I had a choice of a present at those ages,
I wanted something like a new train car, track or other feature for my model railroad. When I went to the
library, I would check out books about trains. Little 3rd grade me didn’t care if the books were for college
students. They were about trains and that’s all that mattered. While I watched plenty of shows and movies
targeted towards little kids, I also enjoyed watching documentaries on trains and railroads. I wanted to
learn all about trains, from old steam locomotives to modern electric trains. I started to lose my interest in
trains some time in upper elementary school. I brought it up to demonstrate how intense special interests
have been a part of my life since a young age.
From high school until now, I’ve been interested in linguistics. Linguistics is the scientific study of language
as a whole, not about learning specific languages. Linguistics is descriptive, not prescriptive. That is, it aims
to describe how language actually is, rather than to prescribe how it should be, or how some people think
it should be. Among other things, linguists study speech sounds (phonetics), how sounds apply to different
spoken languages (phonology), how words are structured (morphology), and how sentences are structured
with those words (syntax).
In college, I majored in and earned a BA in linguistics. Since graduating, I haven’t done any postgraduate
studies in it, let alone pursued any related professional work. These days, I engage in it mainly through
participating in Facebook groups, listening to podcasts, watching YouTube videos, and reading Reddit
posts. I find this very beneficial to my mental health. There are times when I’ve been feeling depressed and
eventually realize that I haven’t looked at any good linguistics content in a while. After I remedy the
situation, I get back into a good mood.
I’m not sure if I can explain why I’ve been so interested in linguistics, but I think it’s just that language is a
part of life. I am using language right now to tell you my story and you are using language to understand it,
and possibly apply it to your own life. Isn’t that fascinating? Well, if it’s still not fascinating, that’s OK. I don’t
think different special interests would be called such if everyone was into them.
10
Literal interpretation of language: Speaking about language, another thing many people with autism are
known for is literal interpretation of language. This was definitely the case for me when I was younger. If the
instructions were “color the fire truck red” and the crayon said something like “brick red” instead of simply
“red”, I wouldn’t use it. Nowadays, I have a pretty good grasp on non-literal use of language, as long as I’m
not overtired, and use it elsewhere in this story. Also, I can probably out-sarcasm even non-autistic people.
(Editor’s Note: This last sentence could not be fact-checked.)
Remember, it was my parents who thought I might be autistic and it was my mom who brought me in to be
tested? Well, the whole time during my evaluation and even afterwards, I was skeptical of any notion that
I might have autism. That was because I barely had an idea of what autism was. When I thought about an
autistic person, the image that popped up in my mind was that of a savant, which I am not. Now I know that
only a minority of autistics are savants.
Even after I began to research autism, it still didn’t look like the criteria applied to me. I remember watching
some YouTube video where they first interviewed an autistic guy who said something like “Before I was 24,
I didn’t know people had emotions.” They probably interviewed other autistic people in that video, but I
didn’t bother to watch the rest of it. Also, the stereotype about loving math isn’t true for me. I find it boring,
except for geometry, and impersonal. Nor is the stereotype about not having a sense of humor.
Even though the first YouTube videos on autism that I saw were not relatable, I eventually found ones that
were, mainly from autistic content creators. I also started to attend social skills groups for autistic people. I
began to see the diversity of autistic life. Some of their experiences matched my own and so I slowly began
to accept that I am autistic as well. There’s a saying that’s commonly attributed to Dr. Stephen Shore, whose
“Strengths and Challenges” article appears in this guide as well: “If you’ve met one person with autism,
you’ve met one person with autism.” Each one of us is so unique. This obviously also applies to non-autistic
people as well, but people are less likely to try to fit them in a box.
Maybe you are reading this Tool Kit because someone suggested to you that you might have autism and
you’re skeptical. Maybe you’ve even been diagnosed and you’re still not so sure. Maybe you think “Aren’t
all autistic people like such and such or so and so?”. Maybe you’ve never come across autistic people who
match your own demographic information. Trust me, there are autistic people who match your own
demographic information. I would suggest learning from as many perspectives on autism as possible: from
autistic people; from their family members; from their friends; and from professionals.
11
When to Seek a Second Opinion The Role of Self-Identification

As previously stated, there are still too few clinicians The rise in availability and ease of accessibility to
with experience evaluating autistic adults. So what do information about autism has resulted in an increase
you do if you think you are autistic but did not receive in the number of people identifying with autistic traits.
a diagnosis after seeking an evaluation? Given the barriers to getting a diagnosis, some people
First, it’s important to remember that clinicians use a opt to self-identify as autistic after exhaustive research
clearly defined set of criteria explained in the DSM-5 and careful self-reflection. Some may even identify as
and used by their peers, to ensure there is uniformity “self-diagnosed.” However, a diagnosis can only be done
across their professions in evaluating autism. Like by a qualified professional. Importantly, a major limit to
other conditions in the DSM-5, a diagnosis of autism is self-identification is that it prevents you from accessing
based on your behaviors a clinician observes. autism services and legal protections.
Many autistic people who are seeking a diagnosis in But for those who have established natural supports
adulthood have mastered the art of masking their in place or who do not require autism-specific services
autistic traits. It can be very difficult to take off the available to those with a diagnosis, self-identification
mask, particularly in front of a clinician you just met may suffice. For many, simply gaining a better under-
and going through a process that can be anxiety-in- standing of their brain is what matters. The semantics
ducing. As such, a clinician may miss your autistic traits around their label does not.
and your diagnosis. If you feel this applies to you, you
may want to seek a second opinion or the help of a Additionally, the autistic community tends to be
therapist to pursue another avenue for evaluation. welcoming to anyone who feels like they belong there.
Many autistic-run organizations and support networks
Otherwise, a good clinician should be able to explain are open to those who recognize certain autistic traits
their thinking, including which criteria you do and do in themselves and who make use of many of the strat-
not meet for any diagnosis they make or rule out. Here egies, tools and resources designed for autistic people.
are some red flags about your clinician that should It is in this space where progress towards full autism
prompt you to seek another opinion: acceptance and awareness can be made.
• Dismisses the possibility of autism rather than
asking questions to understand your reason for But there are also reasons to be cautious about self-
bringing it up. identification. One is the risk of missing another key
diagnosis. Clinical evaluations include assessments for
• Denies that autism affects a specific group, like other conditions in addition to autism, such as a learning
women. disability, anxiety or ADHD, which we will cover in the
• Eliminates the possibility of autism based on an next section. These conditions can be just as important
achievement, i.e., you’re a parent, a college student, as autism when it comes to finding support and
a professional in a demanding field. strategies that work for you.
• Points out masking behaviors as reasons you Another risk is that misinformation is abundant online,
cannot be autistic, such as making eye contact or particularly on social media. Sometimes, as in the case
appearing very social, rather than recognizing them of many personal experience videos, incomplete
as your coping mechanism. information is presented and unfounded solutions are
• Suggests that your intelligence or verbal ability presented. It is important to note that a shared experi-
means you cannot be autistic. ence with another who is autistic does not automatically
• Says that you would have been diagnosed as a child mean that common experience is specific to autism.
if you were autistic.
• Believes that there are no supports or services
available for autistic adults, so discredits the need
for a diagnosis.
12
CO-OCCURRING Signs of ADHD often overlap with those of autism. As a

result, ADHD can be difficult to distinguish in someone
CONDITIONS AND OTHER on the spectrum. If you suspect you may have ADHD,
look for a specialist familiar with both conditions. They
COMMON RELATED ISSUES can evaluate you and discuss strategies, therapy
methods and medications.
Most autistic people are diagnosed with one or more
other physical or mental health conditions. These
generally fall into one of four groups: general medical Anxiety
problems, such as epilepsy, gastrointestinal issues Studies show that up to 50% of autistic adults have an
or sleep disorders; mental-health conditions, such anxiety disorder – over twice that of neurotypical adults.
as attention-deficit/ hyperactivity disorder (ADHD) or Anxiety disorders can include generalized anxiety, panic
depression; developmental diagnoses, such as attacks, obsessive compulsive disorder and fears or
intellectual disability or language delay; and genetic phobias. Social anxiety – or extreme fear of people,
conditions, including fragile X syndrome, which is crowds and social situations – is especially common
typically diagnosed in early childhood. among autistic people. Anxiety can be triggered at
different points in time and by different activities,
Some research suggests that autism shares a genetic
including experiences that used to be enjoyable.
basis with several other psychiatric conditions, includ-
ing ADHD, anxiety, depression, bipolar disorder and Anxiety can result in a racing heart, sweating, muscle
schizophrenia. Research also shows that some of these tightness and stomachaches including nausea and
conditions, especially mood and anxiety disorders, are vomiting. Some people may try to escape the situation,
even more common in late-diagnosed autistic people others freeze in place. Many people with autism have
than those diagnosed in childhood. difficulty controlling anxiety once something triggers it.
What makes identification tricky is that traits that

Attention-deficit/hyperactivity characterize autism, including social differences, can
disorder (ADHD) mimic symptoms of anxiety. Compounding the problem
is that diagnostics to screen for anxiety were developed
ADHD is a developmental disorder that affects an
for neurotypical people, leaving many autistic people
estimated 50 to 70% of people with autism, according
misunderstood and/or under- or misdiagnosed. The
to the National Institute of Health (NIH). It affects the
risk: untreated and poorly treated anxiety in autistic
prefrontal cortex of the brain, which controls executive
adults is known to lead to depression, aggression and
functions (more on those below) and other self-
even self-harm.
regulatory processes. One sign of ADHD is chronic
difficulties with organizing and carrying out actions Recently neuroscientists discovered structural
across time, especially when there is no recognizable differences in autistic people’s amygdala, the brain’s
or immediate reward for doing so. emotion and fear center, that indicate anxiety is
different for those with ASD than it is for everyone else.
The key traits associated with ADHD are inattention,
It only makes sense then that management would be
hyperactivity and impulsivity.
different for autistic people.
• Inattention may include difficulty with focusing or
staying on task, staying organized, listening and Autism-specific anxiety management is still being
following directions. researched. But there are treatment options, including
cognitive behavioral therapy adapted to autistic people
• Hyperactivity may involve fidgeting and squirming,
and sensory diets. The same medications approved to
difficulty with quiet tasks and excessive talking.
treat anxiety disorders in the general population are
• Impulsivity can cause an individual to act without commonly used to help autistic people. These medica-
considering the consequences, interrupt others tions may be best used in combination with counseling
when talking and have difficulty managing their or other behavioral interventions. Read more about
emotions. what has worked for other autistic adults here.
13
Disrupted Sleep Executive Dysfunction

Many adults on the spectrum have difficulty falling Executive dysfunction is not a medical diagnosis but a
asleep and staying asleep through the night. Over time, common behavioral experience that disrupts a person’s
sleep problems can impact physical health, thinking ability to manage their own thoughts, emotions and
and learning and mood. If you have disrupted sleep, actions. Executive functioning includes skills such as
start with good sleep hygiene, like limiting screen time organizing, planning, sustaining attention and inhibiting
before bed, sticking to a routine and limiting caffeine inappropriate responses. Difficulties in this area can
later in the day. You can also talk to your primary care manifest themselves in many ways. Some may pay
doctor or psychiatrist if these strategies are not attention to minor details, but in turn struggle with
effective. seeing how these details fit into the bigger picture.
Others have difficulty with complex thinking that
requires holding more than one train of thought
Eating and Feeding Disorders simultaneously. Others have difficulty maintaining their
Autistic people frequently experience sensory attention or organizing their thoughts and actions.
aversions to tastes, odors and textures and a strong Individuals with autism often face challenges using skills
need for sameness in the foods they eat. If these related to executive functioning like planning,
issues are significant, the person may be diagnosed sequencing and self-regulation.
with an eating disorder.
Anorexia nervosa is more common among autistic Gastrointestinal Issues (GI)

people, especially late-diagnosed women. It appears GI issues, such as chronic constipation or diarrhea,
that up to 20-35% of women with anorexia nervosa abdominal pain and gastroesophageal reflux are even
meet the diagnostic criteria for autism. Treatment more common in autistic people than the general
often involves a team of professionals, including population. The reasons are not fully understood, but it
primary care doctors, registered dietitians, therapists is thought that extreme food selectivity and high levels
and sometimes psychiatrists. of stress common in autistic people might be related.
Because GI discomfort can negatively affect sleep, mood
Avoidant/restrictive food intake disorder (ARFID)
and behavior, it is important to address these issues
applies to those who eat such a limited diet, they are at
with a doctor.
risk of malnutrition and medical complications. ARFID
is different from anorexia nervosa in that it does not
involve concerns about body weight or shape. While Mood Disorders
extreme food selectivity is more common in children,
Autistic people are prone to depression. About
symptoms can carry over into adulthood. Because
one-quarter of autistic people will be diagnosed with
ARFID is a newer diagnosis, it may be harder to find a
depression, a rate four times higher than non-autistic
qualified clinician who also has experience with autism.
peers. Many people never seek treatment for
depression, but when diagnosed properly, therapy and
Epilepsy medications can significantly improve symptoms.
While epilepsy (seizures disorder) affects only 1 to 2 Sometimes, autistic traits can mask symptoms of
percent of the general population, it affects up to one depression. Many autistic people experience
third of people with autism. Seizures almost always alexithymia, which is characterized by difficulty identify-
develop before adulthood, with symptoms most likely ing, expressing and describing one’s emotions. This
to develop during adolescence. can make it harder to notice when a mood disorder is
creeping in and harder to let others know when you
need help. Common behavioral signs of depression
might be easier to recognize in yourself, like loss of
interest in favorite hobbies, changes in sleep or appetite,
low energy levels or frequent headaches and
stomachaches without a physical cause.
14
Bipolar disorder, also known to be more common Sensory Integration

among autistic people and known to develop in the
later teens and twenties, involves episodes of abnor- Dysfunction (SID)
mally high energy, or mania, alternating with episodes Many individuals with autism experience unusual
of depression. Among autistic people, symptoms of responses to sensory stimuli or input due to difficulty in
mania commonly include abrupt increases in pres- processing and integrating sensory information. Vision,
sured or rapid speech, pacing, impulsivity, irritability hearing, touch, smell, taste, the sense of movement and
and insomnia. Psychiatrists often prescribe mood-sta- the sense of position can all be affected, meaning while
bilizing medications to treat bipolar disorder. information is sensed normally, it may be perceived
much differently. Stimuli that seem
Obsessive-Compulsive Disorder “normal” to others can be experienced as painful,
unpleasant or confusing by an individual with autism.
(OCD)
SID can involve hypersensitivity, such as an ability to
Doctors or therapists unfamiliar with autism often
tolerate being touched, or hyposensitivity, such as
mistake some of autism’s core signs like repetitive
an increased tolerance for pain or constant need for
behaviors and restricted interests with those of OCD.
sensory stimulation. These issues are usually addressed
But it is important to distinguish between the two.
with sensory integration therapy, which is provided by
A distinguishing hallmark of OCD is that compulsive
certified occupational and physical therapists.
thoughts or behavior cause anxiety. By contrast,
autistic people are not generally bothered by their
repetitive behaviors and restricted interests, which
tend to bring them comfort and enjoyment. The
estimated prevalence of OCD in those with ASD ranges
from 8 to 33% depending on the study, compared to
the general population prevalence of 2%. For an OCD
diagnosis, it is important that the mental health
professional has knowledge of autism and its sympt-
oms. As is the case with other disorders, a combination
of medication and cognitive behavioral therapy can
significantly improve the symptoms of OCD.
15
Autistic burnout:
When navigating a neurotypical world becomes too much
by Brigid Rankowski and Lydia Wayman, self-advocates and Autism Speaks contributors
Navigating a world designed for neurotypical minds can present some unique challenges when your
brain works differently than most. You might find yourself struggling with things that come easily to those
around you. Over time, this can lead to what many people in the autism community refer to as autistic
burnout — a state of intense mental and sometimes physical exhaustion and loss of skills needed to man-
age daily life.
“I was masking and doing a lot of customer service work. I had someone yell at me and felt
like I couldn’t talk anymore (a recurring theme I didn’t understand) but became so tired of
trying that I quit my job and stayed in my dark bedroom for a week. I didn’t eat unless it
was already made even if I was hungry.”
– Jessica, 27-year-old working professional with autism and single parent to an autistic child
Although autistic burnout is not a clearly defined medical term or formal diagnosis, it is a common and
widely discussed experience, especially in those who have learned to mask their autistic traits to the point
that their true support needs are not recognized.
Neurotypical people can experience burnout, too, often in relation to high-stress jobs or long-term
caregiving. Autistic burnout is similar, but the causes and consequences may look different.
Autistic people may experience burnout at points in life when expectations increase and new, more
complex skills are required for you to keep up. This could be a major life transition, such as a new job or
moving, or a shift into a new stage of life, such as the transition to early adulthood,
Burnout can also creep in slowly. You may feel more worn down without any way to feel like you are fully
recharging yourself. These feelings can gradually affect your home, work and social life in ways you aren’t
aware of because you are unable to see the bigger picture.
It’s important to keep in mind that burnout is not a personal failure but the result of trying to keep up with
demands that take too much energy and are unsustainable for long periods of time.
Autistic burnout might look like:
• Difficulty with skills such as speech and language, executive function, self-regulation
• Heightened sensory sensitivity or need for more sensory input
• Increase in mental health issues like anxiety and depression
• Withdrawing from your usual social activities or relationships
• Difficulty with executive functioning, such as completing tasks and making decisions Increase in
repetitive behaviors, like stimming
• Difficulty with activities of daily living like cooking, cleaning or personal hygiene
• More frequent meltdowns
16
• Sleeping more or having trouble sleeping

• Spending more time alone than usual
Preventing or recovering from burnout involves a combination of reducing demands and increasing
supports. It may take some trial and error to find strategies that work for you.
• If you feel overwhelmed by social interaction at work, you might decide to spend your lunch break by
yourself instead of socializing.
• If you experience sensory overload in crowded indoor places, you might do errands during off hours
or try wearing earplugs at the grocery store.
• If you struggle with executive function demands like keeping appointments or managing finances,
you could use a visual chart or checklist to help you keep track.
• If you are experiencing symptoms of depression or anxiety, consider seeing a mental health clinician.
Look for a therapist who is familiar with autism in adults.
• If you are someone who frequently masks your autistic traits, consider who or where you might be
comfortable enough to let down your guard. You might find it less draining if you don’t force yourself
to make eye contact or avoid self-soothing repetitive movements.
SERVICES AND SUPPORTS Applying for SSI can take several months and involves
providing detailed medical or other documentation, as
Autistic adults are often eligible for services to support well as undergoing evaluation(s) by qualified SSI medical
them in various aspects of their lives. Services vary professionals. It is never too late to apply for SSI. The
from state to state, but most involve a team process can be initiated by you, a family member or
component comprised of the individual, family support person at any time. For more information on
members, friends, and coordinators from any agency SSI, visit ssa.gov or call or visit your local Social Security
or organization where you may qualify for services. Administration office.
The following is not exhaustive but provides some
basic information to help you begin to navigate
programs and options. An official diagnosis is required
State Vocational Rehabilitation
for all federal and state services. Services (VR)
The State Vocational Rehabilitation (VR) Services
Supplemental Security Income Program, authorized by the Rehabilitation Act of 1973,
provides grants to states to assist in VR programs in
(SSI) providing services for individuals with disabilities so that
SSI is a Federal Social Security cash benefit that is they may prepare for and maintain employment and
available to disabled individuals who demonstrate achieve economic self-sufficiency.
financial need. If you are aged 18 or over, your financial
need is based on your ability to earn income. Receiving To qualify, you must demonstrate that autism or
SSI does not prohibit you from working. SSI operates another disability currently presents obstacles to
on a sliding scale. The amount of cash received employment that can be remediated through vocational
monthly is adjusted according to your current income. rehabilitation services. A VR counselor will review your
medical and educational history, as well as employment
experience. This is a significant arena where community
and personal advocacy play an important role.
17
To learn more about applying, visit your local VR office Once an account is established, account contributions
or find your state VR website here where you can find will accumulate tax-deferred and any earnings will be
and connect with your state liaison for further tax-free at the federal level if the money is used for
information. qualified expenses. Typically, contributions for an ABLE
account may not exceed the annual gift tax exemption.
Distributions are only to or for the benefit of the desig-
Medicaid Waivers nated beneficiary for qualified expenses including those
Most states have a program for individuals with related to education, housing, transportation, employ-
developmental disabilities called a Medicaid Waiver ment, and health and wellness among others.
(also known as 1915(c) Home and Community Based
Services (HCBS)). A Medicaid Waiver is designed to You can open an ABLE account by going directly to an
provide support services and care to allow an individ- ABLE program’s website or by calling their customer
ual to remain at home or in the community, rather service. Some state programs may offer paper enroll-
than in an institution, nursing home or hospital. The ment. Find your state’s ABLE programs and website
benefits provided by these waiver programs vary by here: www.abletoday.org/able-programs
state, but most generally provide coverage for medical
treatments, respite care, transportation, in-home
support and more. Waiver criteria and availability THERAPY
varies from state to state. Autism is a lifelong condition, but supports for adults are
often approached differently than in those for children.
You should also note that waivers may have different Though far more research has gone into effective
names in your state. Some common names for them therapies for children, as the population of adults on the
are: Autism waiver, Person Directed Support waiver, spectrum continues to rise and more adults are seeking
Developmental Disabilities waiver or Individual and diagnosis, more studies are beginning to focus on the
Family Support waiver. best ways to help autistic adults.
To learn more about HCBS visit https://www.medicaid. It is important to remember that each person with
gov/. Find out the waivers available in your state here: autism is unique, and as a result, a therapy approach
www.medicaid.gov/medicaid/section-1115-demo/demon- that works for one autistic adult may not work for
stration-and-waiver-list/index.html another. You should choose a therapy based on an area
or skill set you are trying to improve or better manage.
ABLE Accounts The upside to most therapy for autistic adults is that
the insights and skills you can gain can help with other
A new type of savings option was made available for
co-occurring conditions.
individuals with disabilities through the Achieving a
Better Life Experience (ABLE) Act of 2014. The law Some common therapies are as follows:
helps ease financial strains faced by individuals with
disabilities by making tax-free saving accounts Applied Behavior Analysis (ABA) involves techniques
available to cover qualified disability expenses. It for understanding how behavior works with a focus on
allows you to save for long-term expenses without positive reinforcement. It is one of the more common
sacrificing eligibility for public benefits such as therapies associated with autism. It also worth
Medicaid and Supplemental Security Income (SSI). mentioning that it has been criticized by some autistic
adults who contend it is an attempt to make them fit
neurotypical standards.
18
Cognitive Behavioral Therapy (CBT) is a common

type of talk psychotherapy. Working with a therapist
you work to identify negative thinking so you can view
situations differently and respond to them more
effectively. CBT is not adapted for autism though many
autistic people try it.
Occupational Therapy (OT) helps build daily living

skills such as cooking, cleaning and personal care that
become a challenge due to overload. A therapist will
focus on addressing any sensory processing issues or
sensory sensitivities that interfere with your ability to
participate in daily activities.
Social Skills Groups are therapeutic groups for learn-

ing and practicing ways to interact with others and
build fulfilling relationships. Some autistic adults who
participate report long-term improvement in social
communication, social engagement and empathy.
19
Beyond autism-specific therapy:

Finding the help you need
by Megan Farley, Ph.D., psychologist at the Waisman Center at the University of Wisconsin
General Guidelines for Finding the Help You Need

Beyond autism-specific programs and therapies, I can offer you some general recommen-
dations based on my clinical experience, that of my colleagues and that of the many adults
with autism with whom I’ve had the privilege to work. First, it’s important to consider what
type of help you need. Every individual with autism is unique in terms of their challenges and
strengths.
Typically adults with autism come to a mental health clinic because they’re struggling with
one or more issues. Common autism-related challenges include social isolation, finding and
keeping a job or a romantic partner, anxiety or mood problems or an inability to organize
one’s life.
For mood or anxiety problems, I recommend seeing a psychiatrist for a medical consultation
and a psychologist or social worker for individual therapy or group counseling. Ideally you
want someone experienced in helping adults who have autism. So ask for such expertise
when you contact a therapist or mental health clinic.
Beyond Autism-Specific Therapy
Unfortunately, not every community has adult autism specialists. If yours does not, I recom-
mend finding a counselor who seems sincerely interested in learning more about autism in
general and your experience in particular. In addition, it’s important to understand that both
psychologists and social workers can vary widely in the approach they use in counseling.
In my experience, most individuals with autism do best with therapy that takes a concrete,
skill-building approach. Cognitive behavioral therapy (CBT) is a good example of this type of
therapy.
I also suggest that you consider bringing along someone who knows and cares about you for
at least part of the therapy session. In my experience, many adults with autism have difficul-
ty explaining their challenges. Someone who knows you well may be able to help you and
the therapist zero in on the behaviors that are creating problems and develop strategies to
address them.
You might also want to consider group therapy or classes for those who have difficulty with
social interactions. Learning social skills in a group can be particularly helpful because
participants can share observations and suggestions. Your therapist or social worker may be
able to recommend such a group in your community.
Finally, I recommend you look to the community of adults with autism. There are several
good websites that provide information and forums for adults with ASD.
20
RIGHTS Section 504 of the Rehabilitation

With an official diagnosis you are awarded certain pro- Act of 1973
tections under various laws. Below is an explanation of Section 504 is a national law that protects qualified
some of these and the rights they give you as a person individuals from discrimination based on their disability.
with a disability. It applies to employers, public colleges and universities
and other organizations that receive financial assistance
Americans with Disabilities Act from any federal department or agency. For purposes
of employment, qualified individuals with disabilities
(ADA) are persons who, with reasonable accommodation, can
The ADA prohibits discrimination and ensures equal perform the essential functions of the job for which they
opportunity for persons with disabilities in have applied or have been hired to perform.
employment, state and local government services,
Under Section 504, a recipient of federal financial assis-
public accommodations, commercial facilities and
tance may not, on the basis of a disability, deny qualified
transportation. In terms of employment, Title I of the
individuals the opportunity to participate in or benefit
ADA applies to public and private employers with 15 or
from federally funded programs, services or other
more employees and prohibits discrimination based
benefits or deny employment opportunities for which
on disability when it comes to any aspect of employ-
they are otherwise entitled or qualified. Section 504 is
ment, including hiring, firing, pay, job assignments,
also the law that requires school districts to provide a
promotions, layoffs, training, fringe benefits and more.
“free appropriate public education” to each student with
The law also requires an employer to provide reason- a disability, regardless of the nature or severity. While
able accommodation to an employee or applicant ADA also protects individuals with disabilities against
with a disability, unless doing so would cause signifi- discrimination, Section 504 goes a step further by
cant difficulty or expense for the employer. More on requiring organizations receiving federal funds to make
reasonable accommodations below. If you do receive their programs accessible to these individuals. If you
an official diagnosis, it is important to read about your have an official diagnosis of autism, you are able to seek
rights under the ADA, especially if you feel you have protection and accommodations in all federally funded
been treated unfairly or even discriminated against programs – employment, housing, community living,
in the workplace. If there is a “reasonable” accommo- etc. – under this law.
dation related to challenges you face as an autistic
person that could be put into place that may help Enforcing Employment Law
better support you in your job, a diagnosis may help
you secure that accommodation. You can learn more The Equal Employment Opportunity Commission (EEOC),
at ada.gov. found at www.eeoc.gov, enforces laws against workplace
discrimination on the basis of an individual’s race, color,
national origin, religion, sex, disability and age. The law
Section 503 of the also protects people from discrimination based on their
Rehabilitation Act of 1973 relationship with a person with a disability (even if they
do not themselves have a disability). For example, it is
Section 503 prohibits discrimination and requires illegal to discriminate against an employee because her
employers with federal contracts or subcontracts that husband has a disability. It is illegal to harass an appli-
exceed $10,000 to take affirmative action to hire, cant or employee because they have a disability, had
retain and promote qualified individuals with a disability in the past, or is believed to have a physical
disabilities. This law is enforced by the Employment or mental impairment that is not transitory (lasting or
Standards Administration’s Office of Federal Contract expected to last six months or less) and minor (even if
Compliance Programs (OFCCP) within the U.S. they do not have such an impairment). Harassment can
Department of Labor. include, for example, offensive remarks about a person’s
21
disability. Although the law does not prohibit simple • Practice conversations with someone before
teasing, off-hand comments, or isolated incidents that initiating the real one. You can also ask someone
aren’t very serious, harassment is illegal when it is so to read over a script, email or typed message for you
frequent or severe that it creates a hostile or offensive before sending it.
work environment or when it results in an adverse • If you are struggling in the moment, try pausing to
employment decision (such as the victim being fired or write out or even type out your thoughts on your
demoted). phone.
• Find creative ways to express yourself, like art, music
Voting Rights or writing.
It is critical to exercise your right to vote. To access • Carry pre-printed cards in your wallet, pocket,
accommodations, understand the process or learn attached to the back of your phone or even as saved
about candidates in local, state and national level pictures on your phone for high-stakes situations,
elections, as well as register to vote, visit the National such as an emergency contact card or a medical
Disabilities Rights Network. information card.
• Some autistic adults who have limited speech find
SELF-ADVOCACY using some form of alternative and augmentative

communication (AAC) device, such as an iPad, is
beneficial.
Communication Basics
Many autistic people who are diagnosed as adults have
“Because I was diagnosed later in life, I don’t been told for many years that because they speak fine
really have a great barometer for my support in one situation, they should be capable of doing so in
needs. That said I now speak up when I am any situation. They are told to try harder, do better or
feeling overwhelmed, and people have become get it together. Over time, you may internalize these
more supportive when I do so.” messages, but it is important for you to know that your
challenges are real, and they are not your fault. Some
– Tahitia, 49-year-old Black cisgendered, queer, autistic people find that the right communication
autistic woman diagnosed at age 45 strategies are what finally allow them to share their
true self with others. It starts with understanding how
Self-advocacy can take many different forms, but it
your brain works and what strategies work best for
comes down to the same thing – speaking up for your
you. Learning to be patient with yourself will be key in
needs and rights. How can you do this when, as an
becoming your best self-advocate.
autistic person, communication itself is a challenge?
Here are some strategies you can try in situations

where communication is limiting your ability to
Disclosure
advocate for yourself: To tell or not to tell is a very personal decision and
totally up to you. There is no law obligating you to
• Create a script for yourself before making phone
disclose your diagnosis. While weighing the pros and
calls, attending meetings, or any other situations
cons of disclosure and who needs to be told, you should
where you want to feel prepared.
consider why they do and how much they need to know.
• Use a checklist, bulleted list, or visual cues to help
you organize your thoughts. It could be helpful to share your diagnosis with your
immediate family and close friends to help explain your
• Use emails or messages to communicate ideas
behavior and experiences that may have been chal-
that are hard to verbalize.
lenging. Just as your diagnosis may have helped answer
questions you had about yourself, it may also help
clarify questions others in your life may have had about
22
you. For example, telling your sibling you have been di- But when it comes to school and work, autistic adults
agnosed with autism could help them understand why still need to disclose their diagnosis in order to be
you like to use emojis rather than words when eligible for accommodations. Here is how it commonly
responding to their texts, or why you prefer to talk plays out at both.
about your interests rather than the latest streaming
shows that they might find interesting. Telling them School
can also help start a broader conversation about Under both the ADA and Section 504, colleges and
autism where you can learn about it together. More universities are required to provide reasonable
information on Relationships can be found below. academic accommodations to students they admit who
Some level of disclosure will be necessary at school or have disabilities. However, colleges and universities
work if you want to be eligible for accommodations or are not obligated to identify students with disabilities.
exercise protections under the laws covering both as It is up to you to let your school know you are autistic.
outlined above. In these two situations, note that once It is completely voluntary to do so in your application
you do disclose, the information is considered process.
confidential. You own it and are protected from it Whether you disclose your diagnosis on your application
being shared or used against you. Neither institution or not, if you require accommodations, your first step
has the right to disclose your diagnosis to anyone else. is to meet with your school’s Disability Support Services
As noted above under the Evaluation Process, some office. Bring documentation of your diagnosis and the
states require providers report your diagnosis to the impact it has on your ability to function in school. It is a
state Department of Health. Also important to note is good idea to meet with your psychologist, psychiatrist
that if you use your health insurance to seek or primary care physician beforehand to get a letter of
autism-related services, by default you are disclosing their expert opinion of your functional limitations.
your diagnosis to your insurance provider. However, A counselor within Disability Support Services will help
all your medical records are protected and considered you write an accommodations letter which you will then
confidential under federal and state laws, including be responsible to share with your professors. Some
the Health Insurance Portability and Accountability Act typical accommodations include:
of 1996 (HIPAA). This law further protects you by giving
you the right tell providers and your health insurance • Wearing noise-canceling headphones in class
company not to share your information with certain • Using augmentative and alternative communication
people, groups or companies. To find out if anyone (AAC) devices in class
other than your provider or health insurance company
• Preferred seating in the classroom
has accessed your medical record and been granted
access to your diagnosis, visit hhs.gov/ocr/privacy. • A quiet testing space
• Additional time to take a test
Accommodations • Living alone in a dormitory even though the rooms
are meant to share
Thanks to an increase in awareness and acceptance of
autism, public places have started to proactively offer In speaking with Disability Support Services you may
accommodations for autistic people. Retailers have find out that there are specialized programs, clubs and
offered autism-friendly shopping days when the lights activities available to autistic students. Some can assist
are dimmer, the store-wide speakers are silenced and the individual with some barriers they may face in
the crowds limited. Sports stadiums have installed college such as socialization, communication and
autism-friendly rooms which are sound-proof from organization.
outside noise and easily accessed through special
entrances free from long lines and crowds. Cruise lines
have offered autism-friendly tours and hair salons
have adjusted their practices to make autistic custom-
ers more comfortable. The best thing about most of
these is that you do not need to prove your autistic to
enjoy these sensory-friendly events.
23
Employment Person-First vs. Identity-First

Employers have increasingly focused on expanding
efforts to improve access to employment for job
Language
candidates on the autism spectrum to tap their diverse A note on self-advocacy and language: There are so
talents. Many have adjusted their recruitment, hiring many different ways you can describe your autism
and onboarding practices to increase access for this diagnosis. Among them, you may say you have autism
population. or ASD, are an autistic person, are on the spectrum,
are diagnosed with autism, are autistic, or even refer to
Under Title I of the ADA described above, employers yourself as an autist, the noun form of autistic. What’s
with 15 or more employees are required to provide the difference?
reasonable accommodations for an individual with a
disability. A “reasonable accommodation” is defined Person-first language (“I am a person with autism”) puts
as a modification or adjustment to a job, the work the person before the diagnosis. In English, we tend to
environment, or the way things are usually done use person-first language for conditions that are
during the hiring process. These modifications are temporary (“I am a patient with cancer but am receiv-
meant to enable an individual with a disability to have ing treatment”) or separate from a person’s identity (“I
an equal opportunity not only to get a job, but have allergies, but they do not define me”). Some think
successfully perform their job tasks to the same person-first language is a respectful way to talk about
extent as people without disabilities. any disability.
But in order to ask for accommodations, it is up to you Identity-first language (“I am an autistic adult”) puts the
to disclose your diagnosis. You can do so at any time disability in your description. Those who use this say
in your hiring or post-hiring process. A good place to autism is part of what makes them the person they
start is with Human Resources. Be prepared to discuss are, like their nationality (“I am an American citizen”)
how the accommodations will help you perform and gender (“I am a female employee, not an employee
your job. who is female”). Many who use identity-first prefer the
permanence of it versus the temporary and perhaps
Some common and inexpensive accommodations negative connotation of person-first language. We found
include: several studies that suggest identity-first language has
• Asking for a job coach to help with daily tasks and become the preference of autistic people.
appropriate workplace behavior.
Neither person-first nor identity first seemed to matter
• Requesting bright distracting lights to be dimmed. among 150 autistic adults who responded to an online
• Using noise-canceling headphones to focus as long survey we hosted for this Tool Kit. When asked “Do you
as they do not impede your safety. prefer to be called” and told to pick one of four selec-
tions, only 19% chose “Autistic person” and 17% chose
• Asking to respond to verbal requests in writing.
“Person with autism.” The majority of respondents (57%)
• Requesting advanced notice of meetings, selected either “No preference” or “Neither.” (No answer
particularly when you may be required to provide was given by 7% of respondents).
or present information.
The bottom line is the choice is yours, and others should
The Job Accommodation Network (JAN), a service of respect your preferences.
the U.S. Department of Labor’s Office of Disability
Employment Policy, offers accommodation ideas Of note, an increasingly popular term used to describe
specific to autism and even sample accommodation autistic adults is self-advocate. Many autistic adults also
request letters. JAN is free to access at askjan.org. refer to themselves as belonging to the “autistic
community” to distinguish autistic people from the
broader autism community which also includes parents,
siblings, clinicians and allies.
24
RELATIONSHIPS Families
The biggest thing a diagnosis can bring to families is the
“Prior to getting my diagnosis, I believed that beginning of conversations around accommodations,
maybe being close to someone just was something supports and authenticity.
not for me. However, the diagnosis and being
kinder to myself and more open to sharing has Some things to keep in mind when you discuss your
helped me strengthen existing family relationships. diagnosis with family members:
It’s also helped me navigate romantic relationships
• Try not to assign blame for things done, or not done,
better.”
in the past.
– Tahitia, 49-year-old Black cisgendered, queer,
• Assume your family doesn’t know anything about
autistic woman diagnosed at age 45
autism, especially the complicated psychology
When it comes to navigating any relationship with a language, diagnosis criteria and related concepts.
new autism diagnosis it is important to remember that • It is okay to end conversations or place some topics
you have always been this person. You just didn’t have as “off limits.”
the language to explain how you interacted with the
• Your family isn’t entitled to know anything about your
world at large.
medical information.
Expanding on Disclosure addressed above, telling your • People from older generations most likely have
immediate family and close friends can prove to be different experiences with disabilities.
helpful in building a support system as you come to
learn more about yourself. But you must be prepared A common question from family members will be “is
that not everyone in your life will be receptive to your this genetic?” As stated above under Causes of Autism,
news. There may be people who have known you for research suggests that autism does tend to run in
years, like your parents, who don’t understand the families. Your diagnosis may result in your parents or
ways your disability has affected you. They may think other family members seeing examples of your autistic
you had rough times but not fully grasp what that traits in themselves. Whether they pursue a diagnosis
means – perhaps out of guilt, perhaps out of lack of or not, this can spark conversations in your family about
awareness of what autism is or perhaps both. There disabilities and better ways to support each other.
may be others less receptive to your diagnosis and
It is possible that as you work to discover more about
resulting personal growth because they liked or bene-
yourself that you will come to realize that some choices
fited from the person you were before your diagnosis.
you made in life weren’t to live life on your terms but
Here we explore how you can move forward with choices you made out of obligation to or expectations
different relationships, and the ways in which you can from your family. But an added bonus to getting a
discuss how autism affects your life with these people. diagnosis is that many autistic adults reveal it leads to
greater authenticity. That is, you can now allow yourself
to reflect on what you want in life.
It is worth mentioning that autism awareness has grown

exponentially in the last three decades. Thirty, forty
years ago, autism was largely misunderstood. The prev-
alence in 2000 was 1 in 150 had an autism diagnosis.
Today it is 1 in 36. Disclosure was nearly non-existent,
except for those whose disability was physically visible.
In some cases, parents either hid an autism diagnosis
from their child or refused to pursue one. If you are
25
such an adult whose parents withheld this informa- Another thing autistic parents can do is lean on their
tion, it is understandable that you have a whole range community for natural supports. Find babysitters, even
of emotions now. The “what-if” questions that may if it is so you can have some alone time in your house.
arise as you come to grips with learning all of this Sign up to be the recipient of a meal train. Don’t feel you
information about you at once can be overwhelming. need to handle everything by yourself. “It takes a village”
Family counseling with your parents may be in order. applies to all parents. Embrace this.
To find one near you, search by your zip code in
Autism Speaks Resource Guide. If you are co-parenting it may be wise to consult a coun-
selor together to navigate what your diagnosis means.
Many now do virtual visits to purposely observe you in
Parenting your home element, with children present. If you are
Resources for parents who are autistic are few and far already seeing a therapist, ask if this is something you
between. Fewer are those for autistic parents who also can pursue or for a recommendation of someone. Or
have autistic children, or children with any disabilities. look for one in Autism Speaks Resource Guide.
There is no beating around the bush on this: Life can
be difficult if you are an autistic parent. But it can get
easier with a diagnosis, if you let it. Romantic Relationships
Receiving or pursuing a diagnosis while already in a
For starters, a diagnosis should serve to remind you romantic relationship could provide clarity on difficul-
that it is normal and healthy to prioritize your care in ties that exist within it. But a diagnosis does not mean
order to be there for your children. There should nev- that relationship difficulties are on you. In fact, no one in
er have been debate about this pre-diagnosis. There is a relationship can be held responsible for something
definitely no room for that now. they were completely unaware of. Instead, a diagnosis
should help both partners begin to learn more about
With your children, the important thing to remember
their differences; it should lead you to strategies for
is that you set the tone of how behaviors will be han-
better communication, problem solving and acceptance.
dled. They have been picking up all along on all your
subtle and unspoken communications. That doesn’t The self-awareness your diagnosis brings could also
change because you have a diagnosis. What does is result in you re-examining your reasons for entering
that you are now in a uniquely wonderful position the relationship and your needs for the relationship
through them to influence how future generations to continue. Your partner may also have questions. Be
view disabilities as just another part of the human ex- prepared for your relationship to change. As long as you
perience based on how you react to your own sensory, fully accept and honor your authentic self, change will
communication and healthcare needs. be for the better.
One of the bigger issues is: what if you are not in a ro-
One of the greatest things a parent can do is role
mantic relationship, then what do you do after a diag-
model for their children healthy coping mechanisms
nosis? First, you are armed with information to help you
and natural supports. Children may lack language to
know yourself better. That is extremely helpful to any
verbalize when they are stressed, struggling or dealing
person in any relationship. Perhaps if have had trouble
with things that don’t ‘feel right’ in their bodies. But
finding or keeping a romantic relationship, your diagno-
now that you know yourself better, you can role model
sis will help provide some insight as to why.
language, supports, and strategies and normalize the
concept of advocating for your needs instead of Second, when you decide to disclose is when you feel
suffering in silence. In doing so, you will also let your the time is right. It is ok to wait a few dates. But you
children know that adults aren’t perfect and that shouldn’t spring it on anyone as the moving boxes from
everyone needs support at different times to be their your apartment are going into your new shared home.
best self.
26
Third, autistic people can and do date non-autistic Autistic Community

people. In his article for Autism Speaks 10 things to
know about dating someone with autism. Dr. Kerry “I have found community with the parts of my
Magro, Ed.D., author of “Autism and Falling in Love” family and friends who are also autistic or
and autism consultant to the Netflix series Love on the generally neurodivergent. I really appreciate the deep
Spectrum U.S., wrote, “Often a misconception is that and meaningful conversations we have
people on the spectrum want to only date others who and being able to exist around people who get it.”
are on the spectrum. This couldn’t be farther from the
truth. We just want to find someone we connect with – Kit V, 20-year-old Native American male
and can be ourselves with.” currently undergoing evaluation for autism
Wherever you are in your journey with an autism

Relationship Scripts diagnosis, it’s important to know that you are not alone.
Whether you feel relieved or overwhelmed about a
It is very common to have trouble communicating your
recent diagnosis or you’re still figuring things out, there
diagnosis in any of your relationships. It isn’t just that
are people out there who have been in your situation.
autism affects your communication, but maybe more
so that the person on the other side of the conver- Within the autistic community, people come together for
sation knows little about autism and will have many many different reasons -- they might share specific
questions. This can be overwhelming for you. Below interests, advocacy goals or challenges. There are
are some short scripts you should keep in mind. Some groups with vastly different opinions, experiences and
are stock answers that can be used for a variety of beliefs. It can take time, and some trial and error, but
questions. there are people out there who will welcome you and
make you feel accepted as yourself.
“I wanted to talk to you about this, but I didn’t
know how to bring it up. I recently learned I was Check out our Finding Your Community page for a list
autistic and wanted to share it with you.”
of online support groups including peer, recreation and
“I’m still the same person I always was, but now I religious groups, among others. Included is one of our
have new language for some of the areas in my life Facebook groups “Adulting on the Spectrum” (facebook.
I may struggle with.” com/groups/adultingonthespectrum). It is a space for
autistic adults to cultivate friendships, find support and
“I knew there were things I viewed differently, but have fun. The moderators of the group, Andrew Koma-
I didn’t have the specific words for how I viewed
row and Eileen Lamb, are autistic adults themselves, and
the world.”
all group members either have an autism diagnosis or
“It’s not that things didn’t bother me before, but identify as autistic.
I pushed them down because I didn’t know how
much they bothered me or how to express them.”
27
AUTISTIC PERSPECTIVES Here is what we found in terms of their

experiences:
Whether you have just been diagnosed or wondering We broadly wanted to know how autism impact adults
if you should get a diagnosis, it is important to learn and received an array of responses for each of the
about what autism looks like first-hand from other questions listed below.
autistic adults. As stated in the Introduction, in March
2023 we opened up a 25-question survey and solicit- (Note: Responses were only lightly edited for grammar and
ed participation from autistic adults aged 18 or older spelling.)
across social media. All questions were optional, and
the majority were open-ended. We also asked respon- How has autism impacted your relationship
dents for their permission to use their name, demo- with family members, romantic relationships
graphics and each of their answers in this Tool Kit. and/or friendships?
Our goal: To present a diverse set of experiences “Not knowing my diagnosis as a young person, I tend-
across the life span. We received 150 completed ed to camouflage myself by mimicking the
responses from adults who said they were either behavior of others, which over time wore me
diagnosed with autism or seeking diagnosis. Without down and depressed me. In the present with the
their honesty and insight, we could not have revised diagnosis, I put my needs ahead of the expectations
this Tool Kit. Their candor is invaluable in promoting of others. I have no more patience for the theater and
autism acceptance. We hope that you take comfort in hypocrisy of others. I don’t believe in relationships just
seeing yourself in some of their responses or at the because of the title they carry. If in
very least, can learn from their experiences. practice something is not true, I just walk away.
As a result, I am quite lonely, but at the moment I
Here is a picture of who completed the survey: The
prefer it that way.”
average age of the respondents was 40 years old and
the average age of diagnosis among those who – Yan, 31-year-old male considering being
responded was 28. Self-described gender breakdown non-binary, diagnosed at age 30
was: 54% female or cisgender female, 33% male or
cisgender male, 6% non-binary and 2% transgender. “With family, I’ve always been the alien. I’m obviously
Another 5% of respondents didn’t answer. The break- very different from them. With potential friendships,
down of respondents by race skewed white (66%). I’m also pegged quickly as different, in a way the
Another 5% reported being Black or African American, potential friend can’t quite put their finger on. I am
while Asian, Hispanic and Native American were each either avoided as weird or they try to be friends
reported by 3% of respondents. A full 20% of respon- anyways, which ends one of two ways: They either
dents did not disclose. In terms of intersectionality, realize the oddness is all encompassing and ghost me
20% identified as being LGBTQIA+, 38% reported hav- due to “being difficult” or “disinterested” or they
ing multiple disabilities and 38% reported as being a completely understand my differences because they
single parent and/or a parent of an autistic child. are also autistic and are thus not put off. It’s import-
ant to note I’ve only had two long term adult
friendships, both with autistic men. With romance,
I was easily taken advantage of. With my marriage, I
lucked out and randomly met a man who is definitely
not neurotypical but also not autistic. I count him as
my best friend. Even so, we still have VERY autistic
miscommunications and have been in couples
therapy to learn how to communicate with each other.
No danger of divorce, but it is hard.”
– Rachel, 32 years old, married, diagnosed at age 3
28
How does autism affect the way you How does autism play a role in your interests
communicate? and how you engage in them?
“I have to constantly think about what I say versus “There are only so many things I am interested in, but
what I mean. I hate small talk and prefer longer content creation and gaming allowed me to commu-
conversations that have a definitive beginning and nicate in a unique way. Not only did I get a kick out of
end. I have a hard time dating [because of this] and making people laugh, but I also used
tend to be too open about my feelings, wants and this opportunity to fundraise for autism awareness for
desires.” two and a half years. It’s being able to give back with
– Jeremy W, 27 years old, diagnosed at age 5 with your interests that counts.”
Asperger Syndrome – Colton Hurst, 18-year-old college student
diagnosed at age 2
“I find it difficult to understand people’s intentions,
communication makes me extremely anxious as I “When I get interested in something, I get *really*
don’t trust what people say as they often mean interested in it. The term “gift” with regard to
something else. I prefer text and email so that I autism is very controversial. If there is a “gift”
have time to process the conversation. I avoid part of autism, I think this is it. I kind of feel bad
speaking to people on the telephone.” for people who only half-*ss their interests.”
– Anneke, non-binary, single 36-year-old recently – John Taylor, Autism Speaks database coordinator;
diagnosed with autism read John’s story on page 10.
“I do struggle to “read the room” and have to be “When I find something that I “like,” for example, with
told to “know your audience” because I frequently TV shows, I can become obsessed and watch episodes
say exactly what I am thinking and feeling. I have a repeatedly to the irritation of my husband and child.
hard time if someone is displaying emotions, but And it might be one or two shows at a time. So I could
they do not tell me exactly what is going on. I have watch the same episode numerous times in a week
very black and white thinking (I am also diagnosed and even in the same day. As for
with BPD).” other interests outside of TV, it can take a lot for me to
– Anonymous, non-binary working professional break away from the one or two things I’m currently
with multiple disabilities including autism obsessed with. I can put a lot of financial investment
into that focus that could last for months or even
“I communicate very pedantically and love to teach years in some cases. The stuff I buy can pile up to the
others about things I’ve learned. But when it comes point that when my obsession is over, I’ve got tons of
to casual conversation, I often don’t know how to things on it that I may never use again, but I also can’t
respond.” make myself give them away “just in case.” I could
invest hundreds or thousands of dollars to get every-
– Victoria, 21-year-old working professional
thing that has to do with
diagnosed by her therapist
whatever that focus is.”
– Anonymous, 42-year-old married autistic parent of
an autistic child
29
How does a routine or change in routine What sensory experiences do you find
affect you? challenging?
“Routine is important in my work life. Too much “I can’t shower the way most people do. I have to
change or not following the rules leads to burn out.” stand outside of the running water and wash my
– Sally, 58-year-old single autistic parent of an hair separate due to the feel of the water on me I
autistic child feel like I’m drowning. My foods are limited due to
sensory. Sometimes clothes I love and I want to wear
feel like a thousand pins digging into me.”
“I will often have a physical reaction of intense
discomfort and sweating if there is a change in – Grainne N., 35-year-old autistic parent of an
routine. I often become tense and irritable. If it can autistic child
be explained in a logical and practical way why the
routine is changing, then I am more likely able to “I work every weekend to avoid having a lot of free
adjust or at least accept the change. But I often find time when most other people also do. I prefer week-
it hard to express my thoughts and feelings when days when most people are at work.”
routines are changed. This can make others perceive – Pat W., 65-year-old divorced autistic parent of an
me as rude or unreasonable. I’m often left feeling autistic child, diagnosed at age 46
frustrated, ashamed and misunderstood by my
reaction and that of others towards me.” “I’m sensitive to texture when I eat so I don’t usually
– Kaelen, 47-year-old working professional like to try anything new. I tend to eat the same thing
diagnosed last year repeatedly until I change to the next repeat thing I like.
When I was younger I couldn’t stand for my food to
“I require routine, or I dysregulate. Unexpected touch each other on my plate. And I would rotate my
routine changes cause a disruption in my internal plate as I ate. Years later I found out my great-grand-
state, which in turn reduces my ability to function father did that.”
well and compromises my ability to process or relay – Amy, non-binary and married 57-year-old
information.” diagnosed at 45
– Anne, non-binary 44-year-old diagnosed at age 41
“Hanging out at bars and clubs can help my
sensory seeking needs.”
– Jeanna, working professional diagnosed at
age 2
30
CONCLUSION
In conclusion it is only fitting that we pass along
this advice from a gracious autistic community
member who participated in our survey:
“Utilize every resource that you can to get your diagnosis and to better
understand your diagnosis. Also identify your sensory triggers so you can
know what triggers your overstimulation and how you can calm yourself.
The biggest advice though is this: Don’t be ashamed to be on the spectrum.
Autism is not a horrible thing, it’s what makes you unique and your own
person. You are a normal person, you’re just wired to see the world differently.”
– Ashleigh S., 28-year-old working professional diagnosed at age 3
Wherever you are in your journey – whether you just received an autism diagnosis, are
going through an evaluation or considering being evaluated – we hope this Tool Kit has
been a valuable resource to help you better understand yourself and move forward.
If you receive an autism diagnosis, keep in mind that you are not alone. The adult autistic
community is getting stronger every day and the list of resources, supports and adult
providers is growing larger and smarter. Remember the autistic community is open to
anyone who feels like they belong there and who make use of many of the strategies,
tools and resources designed for autistic people.
If you have any questions or additional concerns, or are looking for more, please call or
email the Autism Speaks Autism Response Team (ART):
In English: [email protected] | 888-288-4762
En Español: ayuda@autismspeaks | 888-772-9050
31
GLOSSARY
Americans with Disabilities Act (ADA) is the US law that ensures rights of persons with disabilities with
regard to employment and other issues.
American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM) is the
standard classification of mental disorders used by mental health professionals in the United States. The
current edition, the DSM-5 that was released in May 2013, merged all autism disorders into one umbrella
diagnosis of ASD.
Anxiety disorder is a disorder that affects an estimated 30% of individuals with autism and includes social
phobia, separation anxiety, panic disorder and specific phobias. An individual suffering from anxiety may
experience strong internal sensations of tension such as a racing heart, muscular tensions and stomachache.
Applied Behavior Analysis (ABA) is a style of teaching using series of trials to shape desired behavior or
response. Skills are broken into small components and taught to child through a system of reinforcement.
Asperger syndrome is a developmental disorder on the autism spectrum defined by impairments in com-
munication and social development and by repetitive interests and behaviors, without a significant delay in
language and cognitive development. The diagnosis is no longer used in DSM-5, but instead indicates that
individuals with a “well-established diagnosis” of these conditions “should be given the diagnosis of autism
spectrum disorder.”
Attention-Deficit/Hyperactivity Disorder (ADHD) is a disorder that affects approximately 1 in 5 children

with autism (statistics are not currently available for the prevalence in adults with autism). Symptoms include
chronic problems with inattention, impulsivity and hyperactivity.
Augmentative and Alternative Communication (AAC) refers to the systems and devices used by people
who, some or all of the time, cannot rely on their speech. Typically, AAC includes unaided modes of
communication, like sign language, and aided modes of communication, like communication boards or iPads.
Autism community is an umbrella term that includes autistic individuals, parents and family members of
autistic people, providers, autism allies. Some autistic individuals prefer to be excluded from this term.
Autistic community refers to the community of autistic individuals.
Bipolar disorder is a psychiatric condition once commonly called manic-depression that involves episodes of
abnormally high-energy alternating with depression over a period of time.
Cognitive Behavioral Therapy (CBT) is a form of treatment that focuses on examining the relationships
between thoughts, feelings and behaviors and is used primarily to help individuals with autism regulate their
emotions, develop impulse control and improve their behavior as a result.
Depression is a common but serious illness that involves sadness that interferes with daily life. People with
depression may experience a lack of interest and pleasure in daily activities, lack of energy, feelings of worth-
lessness or excessive guilt and recurrent thoughts of death or suicide.
Executive functioning is a core term that relates to the challenges faced by individuals with autism,
including skills such as organizing, planning, sustaining attention and inhibiting inappropriate responses.
Fragile X Syndrome is a genetic disorder that can cause intellectual disability, behavioral and learning chal-
lenges. There is no cure, but therapies, interventions, and medications are often prescribed to treat behavior-
al symptoms like anxiety, aggression, and ADHD.
32
Home and Community Based Services (HCBS) provide opportunities for Medicaid beneficiaries to
receive services in their own home or community. These programs serve a variety of targeted populations
groups, such as people with mental illnesses, intellectual or developmental disabilities, and/or physical
disabilities.
Job Accommodation Network (JAN) is the leading source of free, expert and confidential guidance on
workplace accommodations and disability employment issues. JAN helps people with disabilities enhance
their employability and shows employers how to capitalize on the value and talent that people with
disabilities add to the workplace.
Medicaid waiver is a program that states may choose to use to provide home and community-based
services (HCBS), like respite and habilitation, to individuals with disabilities who need a certain level of care;
all states operate Medicaid waivers to provide HCBS but the eligibility rules and services vary across waiver
programs and most states have long waiting lists for these programs.
Nonverbal communication is the process of communicating by sending and receiving wordless (mostly
visual) cues between people, including postures, facial expressions, gestures and eye gaze.
Obsessive-compulsive disorder (OCD) is a psychiatric disorder characterized by unreasonable thoughts

and fears (obsessions) that lead individuals to do repetitive behaviors (compulsions).
Panic disorder is a psychiatric condition diagnosed in people who experience spontaneous seemingly out-
of-the-blue panic attacks and are preoccupied with the fear of a recurring attack.
Rehabilitation Act of 1973 is an act of Congress that prohibits discrimination on the basis of disability
in programs conducted by federal agencies, in programs receiving federal financial assistance, in federal
employment, and in the employment practices of federal contractors. Section 504 of the Act created and
extended civil rights protections to people with disabilities.
Schizophrenia is a serious mental disorder in which people interpret reality abnormally. Symptoms can
include delusions, hallucinations, disorganized speech, trouble with thinking and lack of motivation.
Self-advocate is a person who takes an active role in improving their own life by speaking up for them-
selves and communicate their own needs, wants and interests. Here it refers to autistic individuals.
Self-advocacy is representing oneself. Here it refers to autistic individuals.
Self-regulation refers to both conscious and unconscious processes that have an impact on self-control,
but regulatory activities take place more or less constantly to allow us to participate in society, work and
family life. Self-control is a conscious activity.
Sensory Integration Dysfunction (SID) is a neurological disorder causing difficulties processing informa-
tion from the five classic senses (vision, hearing, touch, smell and taste), sense of movement (vestibular
system) and positional sense (proprioception). Sensory information is sensed normally, but perceived
abnormally. SID may be a disorder on its own or with other neurological conditions.
Social Communication Disorder (SCD) is a new diagnostic category established in the DSM-5 that applies
to individuals who have deficits in the social use of language, but do not have the restricted interests or
repetitive behavior you see in those with autism spectrum disorders.
33
Social phobia is a strong fear of being judged by others and of being embarrassed, that can be so strong
that it gets in the way of going to work or school or doing other every day things.
Social Security Disability Insurance (SSDI) is a Social Security Administration program that provides
benefits to people with disabilities (including those with visual impairments) who are “insured” by workers’
contributions to the Social Security trust fund, based on one’s wage earnings (or those of one’s spouse or
parents) as required by the Federal Insurance Contributions Act (FICA).
Supplemental Security Income (SSI) is a program of the Social Security Administration that pays benefits
to people with disabilities who have limited income and resources. It is designed to help aged, blind, and
disabled people who have little or no income. And it provides cash to meet basic needs for food, clothing,
and shelter.
U.S. Centers for Disease Control and Prevention (CDC) is the leading national public health institute of
the United States. Its main goal is to protect public health and safety and is responsible for calculating the
autism prevalence numbers, which as of 2023, stand at 1 in 36 children.
U.S. Department of Labor’s Office of Disability Employment Policy (ODEP) is a division of the U.S.
Department of Labor dedicated to developing and influencing policies and practices that increase the
number and quality of employment opportunities for people with disabilities.
Vocational rehabilitation (VR; sometimes shortened to “voc rehab” in conversation) is a federal and
state-funded program providing services to help individuals with disabilities enter or return to employ-
ment. It is designed to assist individuals of work age with physical and/or mental disabilities compete
successfully with others in earning a living.
34
Have more questions or need assistance?

Please contact the Autism Response Team for information, resources and tools.
TOLL FREE: 888-AUTISM2 (288-4762) | [email protected]

EN ESPANOL: 888-772-9050 | [email protected]
autismspeaks.org
35

Autism Speaks - Adult Autism Diagnosis Tool Kit

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Autism Speaks - Adult Autism Diagnosis Tool Kit

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Adult Autism

About This Tool Kit

David Beversdorf, Ph.D.

Megan Farley, Ph.D.

Elisheva Levin, Ph.D

Catherine Lord, Ph.D.

Kerry Magro, Ed.D.

Stephen Shore, Ed.D.

Co-occurring Conditions and Other Common Related Issues

Services and Supports 17

INTRODUCTION the average age of diagnosis among those who knew

• Your child was diagnosed and/or is being

• You are someone who loves or supports

While we will explain the clinical definition, signs and

What is Autism? To read the whole DSM-5 criteria, including severity

Scientists have conducted extensive research over the Social interactions

Social and communication skills are interrelated. For

Many respondents to our survey reported needing a

Repetitive behaviors are a core characteristic of autism.

Repetitive behaviors can also take the form of intense

Strengths and Challenges

Often highly skilled in a particular area Uneven set of skills

Deep study resulting in encyclopedic Difficulty developing motivation to study

Tendency to be logical (helpful in decision-

Less concern for what others may think of

Usually visual processing (thinking in pictures Difficulty processing in non-favorite

Often very verbal (propensity for giving

Sensory integration problems where input

Loyalty Generalization of skills and concepts

Difficulty in expressing empathy in ways that

DIAGNOSIS Evaluation Process

You may not need a diagnosis at this time if:

What Does a Diagnosis Mean?

Because every autistic person is different, a diagnosis

From denial to acceptance:

When to Seek a Second Opinion The Role of Self-Identification

CO-OCCURRING Signs of ADHD often overlap with those of autism. As a

What makes identification tricky is that traits that

Disrupted Sleep Executive Dysfunction

Anorexia nervosa is more common among autistic Gastrointestinal Issues (GI)

Bipolar disorder, also known to be more common Sensory Integration

Autistic burnout might look like:

• Sleeping more or having trouble sleeping

Cognitive Behavioral Therapy (CBT) is a common

Occupational Therapy (OT) helps build daily living

Social Skills Groups are therapeutic groups for learn-

Beyond autism-specific therapy:

General Guidelines for Finding the Help You Need

Beyond Autism-Specific Therapy

RIGHTS Section 504 of the Rehabilitation

SELF-ADVOCACY using some form of alternative and augmentative

Here are some strategies you can try in situations

Employment Person-First vs. Identity-First

It is worth mentioning that autism awareness has grown

Third, autistic people can and do date non-autistic Autistic Community

Wherever you are in your journey with an autism

AUTISTIC PERSPECTIVES Here is what we found in terms of their

In English: [email protected] | 888-288-4762

En Español: ayuda@autismspeaks | 888-772-9050