Sarah Hollenberger

1) What was going through your mind you were first diagnosed with your spectrum of autism?

A mixture of anxiety and relief. I always knew I was different from other people, but I didnt
know what it was and I felt very frustrated and alone. I thought I was a terrible person
because I couldnt get myself to act normal, so it was very relieving to learn that there was
a name for this feeling and that it didnt make me a terrible person at all. There was also
some anxiety because I worried I wouldnt receive my official diagnosis due to looking and
acting too normal (being able to drive, bathe, clothe and feed myself, talk, etc.). This worry
(that I wasnt autistic enough to count) persisted even after my diagnosis and I ended up
returning to the same psychologist who diagnosed me to help work through this issue.
2) Have you ever felt like it made you spotted out for something due to autism?

Im guessing by spotted out you mean something like singled out or teased. People
in high school and middle school undoubtedly talked about me behind my back, but they
were too scared of me to say it to my face. People would occasionally complain to my
boss at work that I wasnt friendly enough, or teachers would think I didnt care about
their lectures (heck, sometimes I didnt) because I was drawing in class or wasnt looking
them in the face the whole time. What irritated me the most though was, people knowing
I was autistic and what that entails, and still expecting me to smile, make eye contact,
endure their constant shoulder and arm touching, and vary my tone and pitch voice
knowing I cant do that.
3) How has the doctor provided any help or advice on autism?

At the end of my diagnostic appointment she gave me a list of books and websites to
check out that related to teenagers and young adults on the spectrum. Thats all I can
think of off the top of my head.

4) In what ways may it have changed your lifestyle? Or how has it not?

Being diagnosed with autism has definitely changed my lifestyle. Im making smarter
decisions based on my needs and abilities (especially in regard to college, choice of
major and future career) rather than just trying to push through every difficult situation.
My family is a lot more understanding and now they dont get offended or mutter under
their breath about the surly teenager whenever I dont go to family functions and make
eye contact.
5) Do you think that it explains why you have certain social skills or talents?

I think my autism may contribute to my strong verbal skills. Ive always been better with
words than with numbers. Its always been easy for me to learn, memorize, and correctly
use vocabulary words, and I picked up French quickly. I dont know how many people
would consider this a talent, but an aspect of autism I do enjoy are my special interests
and my ability to fixate on them for long periods of time. My special interests have varied

Sarah Hollenberger

greatly during my lifetime, and my love for them can last for years. I spend most of my
free time looking up information about them on the internet or in books, and few things
make me happier than finding a new resource.
6) Do you think that any of the organizations that work towards autism actually help?

Not a lot. Theres a disturbing number of misleading, quack-science-founded

organizations that claim to support to autistic people, but in actuality support eugenicsbased research or focus solely on the families of autistic people and how hard it is for
them. Many large organizations (such as Autism Speaks, Generation Rescue, and Talk
About Curing Autism) actually have no autistic people on their board of directors or in
any real position of leadership. Unfortunately, because these organizations have such a
public presence and gain the top spots in google search results, people will look to them
for answers and absorb inaccurate information. Instead of hearing from actual autistic
people (who, being actually autistic, are the foremost authorities on autism), they hear
from publicity-seeking parents and snake oil salesmen who paint autism as a scary brain
disease that steals your childrens souls. However, there are two organizations I feel
sincerely work towards a better quality of life for autistic people: The Autistic SelfAdvocacy Network and the Autism Womens Network. The president of the Autistic
Self-Advocacy Network is autistic himself, as are the contributors to the Autism
Womens Network. How many autistic people are in positions of leadership for the
organization, how much say theyre given in the organizations activities, and how their
stories are valued are the standards by which autism awareness organizations should be
judged.
7) What do you want people to know about autism?

I want people to know that just because we dont all act like characters in TV shows and
movies, and that just because we dont act like your sisters-husbands-brothers-unclescousins-toaster doesnt mean were not autistic. Autistic people are as diverse as the rest
of the population, and we cant count your toothpicks. Were not all little white boy
geniuses that love math and science. I want people to start listening to autistic voices and
force Autism Speaks out of business, and I want every crap study links X to increased
risk of autism news article paper-shredded. I want people to understand the importance
and necessity of neurodiversity and that disability is a part of the human experience and
not something to hate or fear.

8) Do you feel that youve been able to get enough information on autism to know what its like or
could be like?

Oh yes, I was able to get plenty of information, mainly through the internet. Books can be
kind of iffy because a lot of them are written by neurotypical (non-autistic) people who
can only give an outsiders perspective. Sometimes the books written by autistics got a
little repetitive, because all you saw at Barnes and Noble were the same authors over and

Sarah Hollenberger

over again (Temple Grandin and John Elder Robison). The internet provided more stories
and perspectives and covered more autism-related topics than are typically in
autobiographies. I felt I was able to read more about people who experience autism like
me on the internet than in books.
9) Do you think is it possible that doctors are adding too many possible symptoms to autism just to
increase the numbers in the stats of how many people could be affected by it?

Doctors dont add new symptoms to diagnostic manuals for the hell of it. They do it to
most accurately reflect the current knowledge and ideas on what a given disorder or
syndrome is and is like. The newest edition of the Diagnostic and Statistical Manual of
Mental Disorders merged all the previous autism diagnoses (Autism, Aspergers
Syndrome, PDD-NOS, Childhood Disintegrative Disorder, and Retts Syndrome) into
one diagnosis: Autism Spectrum Disorder. They did this because, after 20 years (the
DSM-IV came out in 1994), what an autistic person was diagnosed with largely depended
on when they were diagnosed, by whom they were diagnosed, and how they were raised.
You could look at two people, think one has autism and the other has Aspergers
Syndrome, only to find that both have Aspergers Syndrome or one has PDD-NOS, or
both have autism. There was simply too much regional variation in diagnoses and overlap
between the diagnoses for the five categories to be meaningful, separately, in their own
right. Autistic people have always been here; we just werent called autistic until the
20th century. The reason autism diagnoses are increasing is because screening measures
are becoming more accurate and account for a more diverse range of autism presentations
than they did 20 or 30 years ago. In other words, were better at finding it.
10) Do you think if they had fewer symptoms to look (like the original checklist of symptoms) for
would you still be diagnosed with autism? Why or why not?

I wouldve been diagnosed with Aspergers Syndrome under the DSM-IV, as I had no
language delay in early childhood. People dont use any editions earlier than the fourth so
I dont think the criteria from the first, second, and third editions really matter.