Ari Ne’eman’s testimony on the necessity for funding for services and supports for autistic people.

– Thank you Mr. Chairman, ranking member Cummings, and esteemed members of the committee.

My name is Ari Ne’eman, I represent the Autistic Self Advocacy Network,
an organization run
by and for autistic people. I also previously served on the
Interagency Autism Coordinating Committee, and let me just say, as an autistic person
and as a tax-payer,I want to thank you for giving self advocates a seat at
the table today. I’d like to begin with a story.

Earlier this year I was visiting a service provider in New York
and I happened to meet a young man, my age, we’ll call him
Joe. And Joe is autistic, like me, but unlike me,
Joe doesn’t speak. He had come in with his father
to try and find a job, and I had a chance to sit down with
Joe and his dad, and ask them questions.
And Joe, despite not speaking, found ways to be very
actively involved in that conversation. He pointed at what
he was interested in, shook his head at what he wasn’t.
He had plenty to say, and few people had ever bothered
to pay attention. No one had ever given Joe the simple
support of a communication device. That technology
exists, it has for years, we just don’t invest in it.
I think about Joe a lot at times like this, because the
current autism research agenda largely ignores his needs.
I’m a big believer in the old maxim,”In God we trust,
everyone else please bring data.” So if you don’t mind,
I’d like to point to some of the data in the autism research
agenda and see what it shows us. In 2010, NIH spent about $217
million on autism research.
Of that, only two and a half percent went to research
on improving the quality of services. Only
one and a half percent went towards research on
autistic adults and our needs. Now, when you compare that
to the percentage of the research agenda focused on causation and biology,
the attention paid to the needs of us here today is laughably small.
I’m not here to speak for all autistic people, that’s impossible
but I am here to speak for the right of every autistic person
to get the support they need to speak for themselves, and
not to be written off as victims or burdens.

Now, some have tried to justify the lack of attention paid to services and
adult issues through talk of an epidemic. I don’t happen to subscribe to that theory, but
if we wanted to study it, and evaluate it scientifically,
a very simple step we could take would be to research
the prevalence of autism in the adult population.
The United Kingdom in fact conducted that study, and

found a comparable rate of autism in adults as in children.
We should be doing that here, and regardless of the result,
we would gain valuable information on support for
autistic adults. I want to highlight three additional points,
and noted at more length in my written testimony.
First, I think it’s very important to stress that there are very
severe racial, income, and gender disparities in the
autism world. As was mentioned earlier, African American
children are diagnosed significantly later than Caucasian children.
Department of Education data has also showed us that low income and minority
youth on the spectrum have
the lowest rates of employment and higher education
access in the years after they leave school.
We also know that gender plays a big role, and many
believe that the 4-to-1 ratio of boys to girls being
diagnosed is at least partially a self fulfilling prophecy
with girls less likely to be identified because they don’t fit the
stereotype. Second, I think that it’s important that when we
talk about autism services, we’re mostly talking about
services with the word “disability” not “autism” on them.
So we have to talk about programs like IDEA and Medicaid.
And a few words on Medicaid in particular:The vast majority of disability
services are financed through Medicaid. If that program were block granted, or otherwise
significantly cut, those services would be devastated.
I cannot emphasize this enough. Ending a robust federal
commitment to Medicaid means ending any meaningful
chance we have to support autistic people.
Third and finally, I want to stress the importance of building
a pathway to employment for my community. Our current
disability service provision system actually makes it very
hard for people who want to work to enter the workforce.
If you are leaving school, you have to choose between
going without support, or committing to exiting the workforce
to qualify for SSI and Medicaid. Quite frankly, that’s just
bad public policy. If you want autistic people to be tax paying
citizens, and we want to be, we need a service system that
emphasizes employment. The Affordable Care Act has made
some progress towards those ends. Another good
example of what we can do can be found in the
TEAM legislation, a bi-partisan collection of bills on transition
for youth with disabilities, introduced by representatives
Harper and McMorris Rodgers. In closing, I’d like to point out
that historically, most disability movements have a certain
life cycle, and autism is no exception. In the beginning, most
public attention focuses on questions of cure and causation.
But with time, both advocates and policy makers realize
that the real issues relate to helping support and defend
the civil rights of people today. Now, in autism that process
is still going on. But I’m confident, I’m confident because
I believe this is a civil rights issue, and I believe that the
United States of America can guarantee the civil rights of
all of it’s citizens. Thank you very much, I look forward
to your questions.

“Of the approximately $217 million dollars that the National Institutes of Health (NIH) invested in autism research in 2010 (the most recent year for which data is available), only a meager 2.45% went towards improving the quality of services and supports available to Autistic people and our families. Only 1.5% went towards research that addresses the needs of Autistic adults. When compared to research on questions of causation, etiology and biology and diagnosis, the percentage of the autism research agenda focused on the actual needs of Autistic people in order to improve their quality of life is miniscule. We are pro-research, but the research agenda must be re-balanced to incorporate both causation and quality of life.

This matters. It matters more than I can possibly articulate, but I will try to do so, nonetheless. I remember recently visiting a service provider in Manhattan earlier this year to learn more about how we can improve disability employment outcomes for people with severe disabilities. While I was there, a non-speaking Autistic man in his mid-20s came in with his father. They were looking for some help trying to find him a job or at least something meaningful to do with his day. I asked him some questions and his father helped give responses, but it was immediately clear that his son knew exactly what I was saying, he pointed out what he was interested in, he shook his head at what he had no interest in, he raised his hands when he was excited. He had plenty to say and clearly rarely got the opportunity. I think about that young man – who probably wasn’t that much older or younger than me – often, and particularly at times like this.

Members of the Committee: Why can’t we do better for him? Why can’t we give him a chance to communicate more clearly, to not only sit here and testify before Congress someday but also be able to tell his supporters and friends what he wants for his life, to tell his parents that he loves them and how important they are in his life? Some people say that until we unravel the causation of autism, that is impossible. That is quite simply not the case – Augmentative and Alternative Communication technology has existed for many years now and can empower even those of us who cannot speak to make their voices heard.

If we invested a mere one-tenth of the amount of money that we currently pour into causation into empowering Autistic people to communicate, that young man and hundreds of thousands more like him would be able to communicate their needs to us today. I am not here today to speak for every Autistic person – that’s impossible. What I am here for is to argue for every Autistic person to have the same opportunity to communicate that I have come to enjoy thanks to the support that I have been lucky enough to receive in my life.”

Read Full Ari Ne’eman’s Testimony Here

Ari Ne’eman’s Testimony-U.S. House Committee on Oversight & Government Reform