 Asperger’s syndrome
Growing Up
Grassroots
Supporting the Emerging Self-Advocate with Autism
By Valerie Paradiz, PhD
Dr. Valerie Paradiz works as an
independent consultant to schools,
organizations, and agencies. She is
the author of Elijah’s Cup, a memoir
of her family’s involvement in the
autistic self-advocacy community
(Jessica Kingsley Publishers) and
The Integrated Self- Advocacy ISA™
Curriculum (AAPC).
For more information, visit
www.ValerieParadiz.com.
1
“Aspie” is a term coined by Liane
Holliday Willey, autistic self-advocate
and author of the memoir Pretending
to Be Normal. Willey created the word
to direct thinking about people with
Asperger’s syndrome away from a
strictly psychiatric view. Like “aspie,”
“autie” is also used by people on
the spectrum as a way to refer to
themselves on their own terms.
Some people with autism use these
expressions interchangeably. Though
it is unknown who coined the word
“autie,” it was being used in the very
early days by those who attended
the first Autreat conferences.
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never knew I was a part of the autistic civil
rights movement until many years after I
had been an active participant in it. This
might sound weird, but back in the 1990s,
during our grassroots days when there were
only a handful of self-advocates with ASD
in the country, I was seeking out the company
of people on the spectrum (and organizations
they had founded). They felt like home to me
and to my son Elijah, who was diagnosed with
ASD in 1994 at age 3. I had yet to be diagnosed
with Asperger’s syndrome. That would come
later. However, convinced that meeting others
on the spectrum was as important to Elijah’s
development as his intensive early intervention
program, I packed up the car with all of his most
treasured stim-stuff and drove us to faraway
places where auties and aspies1 were known to
gather.
One such event was Autreat, a 5-day, retreat-
style conference initiated in 1995 by disability
advocates, Jim Sinclair and Donna Williams
(www.autreat.org). Donna had become my
hero. Her memoir, Nobody Nowhere, was one
of the first to be published by someone on
the spectrum. As I read her book, I felt I had
encountered a kindred spirit, and when I heard
her interviewed by Teri Gross on NPR’s Fresh Air,
she sounded like a sister. I suppose I had a big
red flashing arrow above my head back then,
with the acronym APHID written on it. APHID is
a term coined by Jerry Newport, another early
leader in the self-advocacy community, standing
for Autistic Parent Heavily in Denial.
The attractive thing to me about our new
friends was the fact that their organizations
were run by autistic people for autistic people.
I had never encountered anything like it. Not
only did it seem like a good idea for people
with autism to come together to learn from one
another, but it was also history making! You can
imagine how special it was in those days, when
the diagnostic rate wasn’t the whopping 1 in
110 we’ve heard about in recent reports from
the Centers for Disease Control. We had to travel
far to find other like-minded folks who “got” the
identity aspect of autism. These were advocates
who didn’t view themselves strictly in medical
or psychiatric terms or as a set of deficits in need
of fixing. In fact, they resisted allowing others to
identify them only in this way. It was refreshing
to meet them, particularly after the arduous days
of intensive therapy Elijah endured at school and
home.
So I walked through life telling myself this
story: Elijah had a special community where he
belonged, where he could be himself, where
he didn’t have to work so hard to fit in all the
time. The other part of that story was that I
possessed shadow traits of autism. This helped
me explain my little eccentricities, like my low
sensory threshold for touch, smell, and a variety
of (distracting) sounds and noises. I could relate
to Elijah’s meltdowns over a bursting balloon or
his anguish over a door being suddenly opened
to allow other people’s talking voices to stream
in from the another room, making it hard to
concentrate.
Little did I know that I needed our new autistic
friends and the community as much as Elijah did.
At Autreat, for example, I was mesmerized by
the presentations offered, much more than the
ones I had listened to at parent and professional
conferences. These Autreat workshops had titles
like “Dealing with Your Neurotypical Parents” or
“How My Media Fixations Help Me in My Life.”

As I listened to people on the spectrum share
their own stories, early memories of sitting on
the floor in the living room—my eyes one inch
away from the television screen so that I could
see the pretty little RGB dots lined up in nice
rows—flickered across my mind. My long-time
fascination with tornados, which still exists
today (I collect videos clips and images of them,
checking weather.com and other meteorological
Web sites daily for the latest updates), began to
take on new meaning.
In grade school, I was thought to be severely
shy, and I remember being nearly non-vocal my
entire year of second grade due to the painful
social anxiety I felt. As I grew older, I discovered
that the structure of rigorous academics helped
me compensate for my social insecurity and
awkwardness. I got straight A’s in middle and
high school. I went on through college the same
way, achieving honors, and later completed a
PhD in German literature giving the valedictory
speech for our doctoral class. A good day to
me was one filled with long hours of study and
academic discipline. I was in control that way
and didn’t have to manage uncomfortable social
interactions, which were exhausting (and still
are, even though I enjoy them more). In high
school, I zealously followed the highly detailed
lists I made for myself each day, including such
details as how I’d navigate my way through the
crowded hallways between classes, in the hopes
of dodging as many moving bodies as I could
(my tactile defensiveness hard at work). This had
been my young life. If only I had known then
what I know today, or better yet, if only I had
had more skills in advocating for my sensory and
social needs back then as I do today!
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Asperger’s syndrome 
As years passed and Elijah grew older, I
kept up the story of my shadow traits, in spite
of the fact that I frequently struggled with
As I listened
depression and needed a lot of solitude to to people on the
maintain my equilibrium. I taught literature
and writing at Bard College, a private liberal spectrum share their
arts school near our home in Woodstock, New
York, and relentlessly pursued my research.
own stories, early
But, I rarely sought out the company of fellow memories of sitting
faculty members. In fact, I never attended
faculty meetings and never volunteered to on the floor in the
do committee work, mimicking the routines I
had followed in high school, college, and grad
living room—my
school. I didn’t understand that in order to eyes one inch away
progress in the university system you had to
develop relationships and create social networks from the television
with colleagues. I taught this way for 13 years,
living under the radar, with the false assumption
screen so that I could
that one day I would simply be promoted to see the pretty little
tenured assistant professor.
Through Elijah’s life with autism, I met some RGB dots lined up in
of the closest friends I ever had, all of them on
the spectrum. But when my aspie pals began to
nice rows—flickered
say things like, “Val, you’re busted,” there wasn’t across my mind.
any time, I told myself, to think about my own
diagnosis or the ramifications of it. I was a single
mom, working hard to keep our household
afloat. It would take me a few more years to
begin to see the irony of this.
In 2001, when Elijah was in the fifth grade, he
had a bad crisis. The source was primarily social;
he had begun to feel like an outsider. He was
severely depressed, feeling suicidal, and had
to leave school. That’s when I (finally) gave up
my job at the college and decided to initiate a
full-day, educational program for students with
Asperger’s syndrome in our community. It was
called the School for Autistic Strength, Purpose
and Independence in Education (ASPIE). Elijah
attended the program and found safe harbor
there. Though it no longer exists today (it
lost funding after 3 years), ASPIE’s educational
philosophy was based upon the principles of
self-advocacy and self-determination.
As part of the regular curriculum, I developed
and taught a class for students to foster self-
awareness and a safe forum for understanding
autism. I felt at home in this class, as we explored
important concepts like self-disclosure. When do
you tell someone that you’re on the spectrum?
Is it always safe to do so? The kids ate it up. They
also liked our lessons on media literacy, during
which we watched clips of news reports that
involved autism. Analyzing key elements (such
as who produced the story, who the intended
audience was, and whether the presentation of
what it’s like to be autistic was, in their minds,
accurate or fair) opened doors to self-discovery
and confidence. They were finding their voices!
Directing the school was harder than teaching
99
 Asperger’s syndrome
the self-advocacy class. After being a timid
professor for over a decade, I was suddenly
I bring up this the executive director of a school program
point because I feel (that ended up on the front page of The New
York Times), supervising 15 full- and part-time
that many adults on staff, maintaining relationships with 16 families
and their children, collaborating with our
the spectrum learn partner school district and its administration.
to ignore chronic My social learning curve was steep to say the
least. So steep, in fact, that a new version of
health issues. We my story finally began to surface. The insomnia
I remember having since I was a child was
do so because we at an all-time high, and my GI and digestive
have been led to problems had become so extreme that I was
using up my sick days to lie in bed at home.
believe since we Ever since I was a girl, I had experienced chronic
abdominal pain and constipation (sorry for the
were very young bluntness, but the truth is important). It always
that these symptoms grew worse under stress or whenever I was in
socially tense situations, which for me is usually
are “behavioral” (our in groups of three or more people. I bring up
this point because I feel that many adults on the
difficult moods) and spectrum learn to ignore chronic health issues.
therefore don’t merit We do so because we have been led to believe
since we were very young that these symptoms
treatment, such as are “behavioral” (our difficult moods) and
therefore don’t merit treatment, such as using
using probiotics or probiotics or avoiding particular types of foods.
avoiding particular Needless to say, my friends on the spectrum
did an intervention and urged me to finally
types of foods. get evaluated. With their support, I decided to
take part in a study on adults with Asperger’s
syndrome at NYU Hospital in New York City.
As a result of that 2004 study, I was diagnosed
with Asperger’s syndrome. I was 40 years old.
Coming out at this stage in my life was tougher
than I imagined it would be. Adjusting to the
new diagnosis, taking steps to improve my life
and relationships, and knowing how to talk
about it to others took several years. It was
ironic to be in this position since for years I had
fostered Elijah along to learn skills in expressing
his needs, requesting accommodations, or
celebrating his strengths. He knocked my socks
off, when, as an older teen, he developed his
deep interest in comedy into a full-blown
standup career, traveling around the country
to comedy festivals and autism conferences as
“Mr. Inevitable,” performing hilarious acts about
being on the spectrum.
Meanwhile, I was taking my first baby steps
grappling with my diagnosis. Elijah seemed light
years ahead of me, feeling comfortable in his
own autistic skin, while I faced the hard lesson of
learning the deeper nuances of self-disclosure.
Two years after my diagnosis, I was interviewed
for a wonderful job directing a large training
center at a big agency that provided educational
programs, services, and residential placement
for people with developmental disabilities.
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During the interview, I made the naïve mistake
of disclosing my Asperger’s syndrome. Though I
was told at the time that my diagnosis would be
an asset to the organization and was offered the
job, the administrators abruptly changed their
minds about hiring me just days before my start
date, and after I had already moved to a nearby
town to begin my work there.
Veteran self-advocates with ASD offered
insight, saying the sudden turnaround was
probably political. Whatever the explanation,
I learned a lot through that unfortunate
experience and decided to formalize the self-
advocacy curriculum (released in November
2009 by AAPC) I had already developed several
units of during my years at the ASPIE School. The
next unit I decided to write dealt with teaching
people on the spectrum the basic elements
of the Americans with Disabilities Act, which
ensures the right to not self-disclose during a job
interview.
Another chapter of the curriculum (and
perhaps my all-time favorite because I must work
hard every day to keep my sensory challenges
in check) is the Sensory Scan™, which teaches
students how to survey environments for their
particular sensory discomforts, then create an
Advocacy Plan to make themselves feel better
(such as requesting an accommodation). We are
currently piloting the Sensory Scan™ program
in several public schools in New York City,
collecting data to test whether knowing how to
scan helps students with ASD experience fewer
ineffective behaviors, like yelling, hitting, or even
shutting down.
I have worked in the educational fields
as a professor, teacher, administrator, and
self-advocate for nearly 25 years. Today, one
important thing has begun to stand out for me:
as much as we want the friends we care about
on the spectrum to become independent, the
support for achieving this dream is severely
lacking in most programs and for people with
ASD of all ages. In recent years, educators
and therapists have discovered how critical
developing social thinking and social skills are for
people with autism, but we have yet to develop
systems for showing and teaching individuals
with ASD how they can be active shapers of their
own quality of life. Self-advocacy is the missing
link. Learning to advocate for environmental
accommodations or finding out the basic
elements of the Americans with Disabilities Act
can be life changing. If you stop to think about
it, self-advocacy plays a vital role in nearly every
aspect of life for a person with ASD. The more
self-awareness we on the spectrum possess
about our condition, the more we can be players
in advocating for our own comfort, happiness,
productivity, and well-being.