A Statement From the Autistic Self Advocacy Network on World Autism Day

[Guest guest]

*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