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First Published Thursday, 3rd April, 2008.

*These comments were delivered today to the Florida Autism Task Force’s
inaugural meeting by ASAN President Ari Ne’eman.

*
Thank you for this opportunity to address the first meeting of the Florida
Autism Task Force on today, the first World Autism Day. My name is Ari
Ne’eman and I am here today in my capacity as the President of the Autistic
Self Advocacy Network (ASAN), a volunteer non-profit organization run by and
for adults and youth on the autism spectrum. ASAN works to promote the
autistic culture movement and other opportunities for individuals on the
autism spectrum to interact with each other as well as work to improve the
representation of the autistic community in public policy deliberations
about autism and disability affairs.

The autism spectrum is broad, diverse and subject to many stereotypes. Just
as we work to combat generalizations about racial, religious, national or
other minorities, it is only right to avoid a stereotyped view of autism.
There are speaking and nonspeaking people on the autism spectrum; people
currently capable of living independently and holding competitive employment
and those with more significant support needs before those goals are
conceivable to them. There are those of us who have held diagnoses since
childhood and those of us who were identified later in life, serving to
correct an inaccurate previous diagnosis that had placed us in the wrong
educational or service-delivery infrastructure. To claim, as some continue
to do, that we on the autism spectrum are all incapable of speaking for
ourselves is an ignorant and damaging falsehood. Equally harmful is the idea
that autistic people are all geniuses or savants, with Rain Man-esque
abilities. As someone with an autism spectrum diagnosis myself, I hope to
address some of these misconceptions, explain a bit more about our community
and inform those assembled here today about the public policy priorities –
and concerns – of the autistic self-advocacy movement. In doing so, I hope
to communicate to you that, contrary to the unfortunate paradigm that has
pervaded the media discourse about us, autism is not a tragedy. We are, as
with any other minority, a community with unique needs, strengths,
challenges and aspirations that are often distinct from the parent or
professional voices that speak about us, without us. The true tragedy is the
persistent discrimination, abuse and lack of access that continues to govern
society’s approach to us. On this, the first ever World Autism Day, we
assert that it is this prejudice – not autism itself – that we have a true
interest in combating, in the interest of ensuring for every person the
rights of communication, inclusion, self-determination and respect.

I was diagnosed on the autism spectrum, specifically Asperger’s Syndrome, at
age 12. Growing up, I spent time in both inclusive and segregated
educational placements. My own negative experiences with segregated
educational environments led me to become an advocate for my own educational
inclusion and later for the inclusion of other students with disabilities.
These experiences motivated me to found the Autistic Self Advocacy Network,
an international grassroots advocacy organization of adults and youth on the
autism spectrum. ASAN’s work has involved me in a number of areas of public
policymaking that are important to people on the autism spectrum, some of
which I will outline here.

In determining how best to develop a system that provides for the
educational, service-delivery and other needs for individuals on the autism
spectrum, it is imperative that self-advocates be recognized as the central
stakeholder in this discussion. I’m happy to see Florida creating an Autism
Task Force to identify what needs to be done in the areas of education,
services, supports and research, however I am saddened that the task force
did not provide for representation from people on the autism spectrum
ourselves. During my time in Florida, I will be working to create a chapter
of the Autistic Self Advocacy Network. I encourage the members of the Task
Force to communicate with us in their deliberations. Future policymaking
bodies relating to the autism spectrum and disability issues more generally
must include self-advocates. We know our own needs best and no policymaking
process can be legitimate without including those who it purports to serve.
Nothing About Us, Without Us!

One of the key areas of unmet need for the autistic community – the
community of those of us actually on the autism spectrum, as opposed to the
parents and professionals who make up the frequently discussed autism
community – is in the area of diagnosis. As many of you familiar with the
autism field are aware, we have been seeing a steady increase in the
reported incidence of the autism spectrum, with the most recent update
pointing to an incidence of 1 in 150 from a previous 1 in 166. The reason
for this increase in reported incidence is not an “autism epidemic” or any
other causation theory that seeks to promote the false idea of autism as a
contagion or a force that “steals” an otherwise normal child. This
disease-oriented model is not supported by either science or our own
experiences. What we are seeing is an increase in awareness of the autism
spectrum, resulting in more accurate diagnosis identifying individuals who
previously were placed within the mental retardation, mental illness,
learning disability or other educational and service-delivery
infrastructure. This is a situation that I myself experienced, having been
diagnosed on the autism spectrum after having an inaccurate ADD diagnosis
for years prior. It is also something that is experienced by many other
adults and youth on the autism spectrum in a far more damaging fashion, as a
result of the frequent institutionalization and presumption of cognitive
inability that far too many autistics continue to suffer from today.

The rapid increase in autism spectrum diagnoses has accompanied repeated
broadening of the diagnostic criteria for the autism spectrum, incorporating
more information about the diverse manifestations of our neurological type.
In addition, the past few decades have resulted in a decrease in the
stigmatization of parents of autistic children, as a result of the medical
community moving away from the odious and damaging inaccuracy that autism is
the result of “refrigerator mothers”. This, combined with increased services
and supports available for the autism spectrum, has resulted in more autism
spectrum diagnoses. These increasing numbers, however, fail to take into
account the substantial number of individuals on the autism spectrum who, as
a result of a lack of health care access and/or professionals trained in the
diagnosis of adults as well as problems with inaccurate diagnostic criteria,
are unable to find the resources to acquire the diagnosis that would
accurately describe their characteristics and enable them to qualify for
services. It is necessary that we increase the availability of accurate
information relating to the autism spectrum in reference to adults and
youth.

There remains a shocking lack of awareness for the needs – and even the very
existence – of autistic adults. In many circles, it is assumed that autism
is something relevant only to children and as a result legislation and
policymaking has been focused mostly on early childhood. However, there is a
large population of adults and adolescents on the spectrum with needs that
are not being met. In areas like employment accommodations and other aspects
of disability service-delivery, adults on the spectrum are frequently unable
to access the supports that are currently available, due to a lack of
knowledge of our particular needs. Many of us, as is the case for others
with less obvious, “invisible” disabilities, face pervasive employment
discrimination as a result of communication difficulties. Vocational
Rehabilitation agencies in many states are unaware of how to address these
issues, due to the fact that while many of us have the skills for
competitive employment, difficulties with transportation, the interview
process and the social aspects of the workplace can often interfere with
holding a job. It is important not only to educate the general public about
autism, but also disability service-delivery professionals who are too often
unfamiliar with our population.

Many adults on the autism spectrum continue to suffer in institutions,
despite the Supreme Court decision of Olmstead v. L.C., promising community
living options for adults with disabilities. In my work on New Jersey’s
Olmstead Implementation and Planning Advisory Council and with ASAN chapters
across the country, I have seen a consistent lack of knowledge of the unique
needs of adults on the spectrum when planning community living options. Many
of us have difficulties with certain kinds of sensory environments – a lack
of awareness of these issues on the part of those planning and implementing
the transition into the community can result in problems with the
de-institutionalization process. These and other aspects of community living
show the need for significant representation of self-advocates in the
policymaking process, to ensure both the legitimacy of the process and the
creation of the most effective possible public policy strategies.

Autism training for law enforcement (as well as other emergency personnel)
remains a key issue. Many of us possess significant difficulties with
communication, particularly in high-stress and anxiety-provoking situations.
What happens when a person who cannot speak out loud when under stress is
approached by a police officer and asked for personal information? What
about when a person fails to understand instructions given to stop or
engages in an activity that is interpreted as aggressive? There have been
numerous incidents of serious injury and even death as a result of a lack of
knowledge on the part of law enforcement personnel about autism and other
disabilities. This must be rectified and has been the source of legislation
in a variety of states across the country. High-quality training for law
enforcement and other emergency personnel does exist and it should be
utilized in every locale.

For many adolescents on the spectrum and our families preparing to
transition out of the school is a process with little guidance or support.
When I was preparing to leave high school, my school did not provide
sufficient information on the college applications process because it was
assumed that as a special education student, my options were limited. While
it is certainly the case that not every student on the spectrum – or every
student generally – will be able to attend university, more of us are having
that opportunity. It is necessary to see more of a focus on college
transition for students on the autism spectrum in both high schools and
universities. One of the areas that is frequently ignored in this process is
that of “soft skills” related to day to day living. Many of ASAN’s parent
members frequently are told that issues relating to life skills are not the
obligation of school districts, despite the fact that this type of education
is just as necessary for students to succeed as the more traditional forms
of academics. The communication and executive functioning difficulties that
those of us on the spectrum face compound the traditional difficulties that
new college students face. In fact, these issues – as well as the matter of
transition more generally – are relevant for all students on the spectrum,
whether or not college is a possibility. For a successful transition to a
post-secondary environment of any kind, basic life skills need to be
understood. It is essential that steps be taken to incorporate these
elements into the school curriculum in an inclusive fashion.

In a broader sense, educational needs for students on the spectrum must be
given additional focus. There has already been a productive discussion on
the issue of early childhood educational methodologies. It is important to
keep in mind that any educational intervention should be aimed at the
acquisition of skills, not trying to enforce an arbitrary standard of
normalcy. Efforts should not be aimed at the undesirable and impossible goal
of trying to make autistic individuals non-autistic. Instead, education
should be aimed at addressing the significant disabilities many of us face
with the goal of improving quality of life. We also have to ensure that are
educational methods avoid utilizing abusive and dangerous techniques in the
name of treatment. The use of aversive interventions, the application of
pain as a means of behavior modification, should be considered unacceptable
in any society that aspires to be termed civilized. As a result of aversives
and abusive restraint practices, many students and adults in institutions
are injured or even killed each year. This must stop. We need a full ban on
the use of aversives and non-emergency restraint as well as an end to
out-of-state placements that put students in facilities that utilize these
barbaric methods.

We also have to face up to the persistent problem of bullying and its
negative effect on the mental health of all students. Students on the autism
spectrum are particularly vulnerable to bullies due to the social literacy
issues we tend to have. When I was in school, bullying was one of the
reasons I spent a period of time away from my home school. This is a common
situation for students on the spectrum and represents a grave obstacle to
our legal right of a “free and appropriate public education in the least
restrictive environment”. I know that the success that I have achieved today
would not have been possible had I not returned to an inclusive school
setting where I learnt more about how to successfully adapt to the world
around me. Yet, as a result of bullying, many students face serious
emotional or physical injury if they remain in their home schools. This also
must be stopped. Florida remains one of a handful of states without true
anti-bullying legislation. I urge the legislators and activists here today
to address this problem.

Finally, I turn to the more controversial area of research. Here, the
autistic self-advocate community holds strong views that may clash with
those of some of the interest groups assembled today. The persistent focus
on both causation and cure in the autism research agenda has left promising
areas of research ignored would could positively impact the quality of life
for those of us on the spectrum. Despite extremely encouraging possibilities
in the realm of Assistive and Augmentative Communication (AAC) technology
for many individuals on the autism spectrum, research in this area is given
little to no funding. The development of best practices in service-delivery
and education is too often ignored. Mental health needs, restraint
reduction, health care access, transition, adult supports and a variety of
other educational and service/support needs could all benefit from more
research into best practices and effective methodologies. Yet quality of
life-oriented research in general is underfunded. If we spent one-tenth of
the money and attention we currently lavish on the idea of an autism cure on
communication technologies, countless, nonspeaking autistic people would be
able to communicate today. The fact that we have not pursued promising
avenues of research into communication possibilities should be a source of
great concern to us as a society.

There are also concerns that we have about the type of research that is
being funded. The autism spectrum represents a natural and legitimate part
of human genetic diversity. As a result, efforts to identify genes
associated with autism with the goal of developing a prenatal test, enabling
the possibility of selective abortion, should be met with opposition from
all those concerned about the issue of disability rights. Given the fact
that 90% of fetuses that test positive for Down Syndrome are aborted and
there exists a similar social stigma against the autism spectrum, I urge
both private foundations and government research institutions to re-orient
their funding away from research with eugenic applications. While we have no
position about the broad issue of abortion, the issue of eugenics is of
great concern to us.

Thank you for your time. If we as a society seek to fulfill the values we
espouse, we must take practical steps to establish ourselves as a culture
that respects neurological diversity in the same way that history has shown
us to respect racial, religious, national and other forms of diversity. We
on the autism spectrum can make significant contributions to the world
around us and, with the right supports, services and education, we can and
should be active and participating members of society. By pursuing the goals
of inclusion, respect and access, we can make that a reality. I’d like to
end with a quote from Jim Sinclair, the founder of Autism Network
International (ANI), the first autistic self-advocate organization and a
group from which much of the growing autistic culture developed from. “”The
tragedy is not that we’re here, but that your world has no place for us to
be.” Today, on the first World Autism Day, I encourage all of us to think
about what we can do to change that unfortunate reality and pursue a policy
of autism acceptance, now and into the future.

*
*

Ari Ne’eman
President
The Autistic Self Advocacy Network
1101 15th Street, NW Suite 1212
Washington, DC 20005
http://www.autisticadvocacy.org
732.763.5530

In addition, here are Ari’s comments/thoughts on the days events:

Today, as you may be aware from the copy of my comments that went out
earlier, I addressed the Florida Autism Task Force meeting. I wanted to
share a few thoughts about how the day went. My general impression was that
it went positively. I followed a speaker who spoke at length about the
epidemic and vaccinations, so I had the opportunity to correct a number of
misconceptions. One of the things that surprised me in the response to my
comments is that it was overwhelmingly positive, despite my statements
against cure-related research and some off the cuff remarks I added talking
about how a cure is not only undesirable, but fundamentally impossible. I
also added in some information about how the “3 out of 4 autistics are
mentally retarded” statistic was inaccurate and explained a bit about the
work done by Laurent Mottron and Michelle Dawson, amongst others, on
intelligence testing and the autism spectrum – the previous speaker had also
referenced that inaccurate bit of information.
Following a period of applause, I took two questions on the issue of cure,
asking me to clarify my comments in relation to eugenics. I affirmed what I
had stated previously, and elaborated on the fact that many promising areas
of research funding were not being pursued as a result of a focus on
cure-oriented research. A question followed about the issue of person-first
language, in which I clarified our position on that matter, noting that the
preference of much of ASAN’s constituency is for identify-first or
identity-inclusive language rather than person-first language, though we do
respect the right of disability communities and even particular individuals
to make their own choices on the issue of terminology. A further question
discussed the issue of bullying, from which I elaborated on our work in
Maryland on the topic and promised to provide copies of draft legislation
Florida can utilize on this issue. Several other questions in this vein
ensued, discussing some of the issues in relation to adult supports and
education. I also had the opportunity, of which I, as always, availed myself
of, to comment on Autism Speaks and similar organizations. I made clear our
feelings on the organization, its funding decisions, its advertising and its
recent efforts to silence self-advocate voices.
One Task Force member had a particularly interesting comment to share. She
announced that, while she was not anti-cure, her 14-year old autistic son
was. This had led to a somewhat interesting situation in which he was
threatening to picket in protest at the local Autism Walk her organization
had helped organize. My comment in response to that was simply that we’d be
glad to provide him with flyers and news coverage, if he’s so inclined. 😉
I’ve also promised to put him in touch with other adolescents and young
adults on the spectrum and made some progress “converting” the mother to the
neurodiversity perspective. We pursued some interesting conversations with a
number of the representatives on the Task Force and we’ve received
commitments from several parent and professional organizations to work with
us in developing Florida ASAN chapters and to ensure that these chapters
have access to policymaking circles once we have established them. We’ve
been particularly successful in working with Parent Training Information
Centers in the past in other states and I think this will be no exception.
The Family Network on Disability, which arranged for my trip down to Florida
in the first place, is Florida’s PTI and their leader expressed strong
support for the neurodiversity movement and the idea of
services/supports/ education as the primary priorities for research rather
than the continued impossible and undesirable quest for a “cure”. Finally, I
had a somewhat fruitful discussion with Dan Marino, the co-Chair of the Task
Force and the former Quarterback of the Miami Dolphins. He has offered to
instruct his foundation to work with us to re-orient some of their research
funding towards more quality of life related avenues. My understanding is
that while they are by no means perfect, they are already pursuing some
funding in this vein and are open to providing for more in areas like
transition, communication and mental health. In the evening, I sat down with
representatives from the Family Network – both of whom were parents of
children on the spectrum (one with an Asperger’s diagnosis, the other who
was currently nonspeaking) . Both expressed opposition to the idea of cure,
concern about biomedical and ABA-oriented treatment methodologies and worry
at the lack of a strong neurodiversity presence in their home communities.
Support for an ASAN presence was strong, particularly in light of the
memories many of the people there had of the Ransom Notes ads and their
involvement in the disability community’s campaign to see them withdrawn.
I’m also hoping to connect them with the Autism Acceptance Project and some
other efforts, with the aim of building up the neurotypical ally wing of the
neurodiversity movement in that area.
All in all, it was an exceptionally productive day and I look forward to a
similarly productive one shortly.
I’m going to be headed to bed now – the Florida Autism Task Force’s second
day starts in less than six hours (I hadn’t realized what time it was while
I was responding to some of the important issues Charles raised and then,
again when I was preparing a press release I’m sending out tomorrow morning
about an exciting recent event in New Jersey. The disadvantages of
hyperfocus! 😉 ). All the best everyone, and feel free to e-mail me with
your comments and suggestions. Friday morning I will be meeting with other
local autism and disability rights groups in the Tallahassee area before
flying back to Baltimore.
Regards,
Ari Ne’eman
President
The Autistic Self Advocacy Network
1101 15th Street, NW Suite 1212
Washington, DC 20005
http://www.autistic advocacy. org
732.763.5530



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