September 27, 2006

The Bergen Record
150 River Street
Hackensack, NJ 07601

To The Bergen Record,

I am a Bergen County resident living in Tenafly. I am also an autistic adult. As the author of "Life and Love: Positive Strategies for Autistic Adults," and as an advisory board member of the Global and Regional Asperger Syndrome Partnership, the only national autistic-run self-advocacy group, I particularly looked forward to an issue you covered that is rarely written about – adults on the autism spectrum living and working alongside everyone else in the community.

We face special challenges: This is well-known. For example, most autistic adults are unemployed, underemployed or otherwise dealing with chronic employment problems.

Many autistic adults also have trouble finding and maintaining suitable housing. Lesser known but just as important problems include epidemic low self-esteem, higher rates of drug use and suicide, and social vulnerabilities that inevitably result in higher rates of violence, sexual abuse and domestic trouble.

If one looks only at the difficulties, though, the picture would be incomplete. On the positive side, autistic adults are coming into our own culture of sorts. A lot of us, including myself, were not diagnosed as children. The autism umbrella in the 1960s, 1970s and even into the 1980s was narrow. What is it like to learn as an adult that you are autistic? Is there a way to build a new life, with new knowledge and new self-awareness, based on autistic strengths?

Autistic adults have much to offer society. Everyone is unique. But it is safe to say that in general, those of us on the spectrum tend to be great at objective analysis, an important skill in an age when all of us are deluged by "information overwhelm." We speak the truth, avoiding conversational decorations, subtleties, and indirect communication that can be confusing or even hurtful in the world's current atmosphere of cultural relativism. We are not easily trapped by titles, degrees, status or other externalities, preferring to see and meet all people as equals. To us, the differences among people are healthy and important, the varied ingredients in the pot of human endeavor.

It is not really our autism but the world's barriers and judgments that prevent us from reaching our potential and offering our gifts. In a world that increasingly understands the value of diversity, at least one more threshold needs to be crossed: Neurological diversity is just as crucial to the survival of a world that seems in desperate need of the strengths and skills autistic people can offer.

Zosia Zaks
Tenafly, NJ

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The New York Times: How About Not 'Curing' Us, Some Autistics Are Pleading
Zosia Asks: Since When Did Mickey Mouse Become Part of ABA? (unpublished)

December 20, 2004

The New York Times
229 West 43rd Street
New York, NY 10036

To the Editor,

As an Autistic woman, I commend your front-page article, How About Not 'Curing' Us, Some Autistics Are Pleading, for expressing eloquently the viewpoint of many Autistic people, whether we are "high" or "low" functioning - a controversial division in and of itself. Your very article points out again one reason why so many Autistic adults shudder at the thoughts of "cures" and "therapies". Isn't that mother embarrassed that she won't let her son dress as Mickey Mouse on Halloween, just because she wants him to fit in with his peers who apparently all love Frodo these days?

When I was little, I always wanted to be an Indian, not a princess. I was teased a little by some of the other girls - we all have to learn to deal with that at some point. Part of growing up is standing on your own two feet. The other little girls also loved the beaded parts of my Indian costume. I feel like sending my mom a dozen roses right now for letting me be myself, Autistic or not. All human beings deserve dignity and volition.

I don't think anyone has a problem helping a child who has no way of letting anyone know he is hungry, cold, or sick. Learning to read is a worthy goal too. The anger of many Autistic people begins when therapy goals slide down a slippery slope. This happens all the time. Last year, The New York Times Education Life ran an article by Jane Gross, An Answer to Autism: Nudging Toward Normal where a tiny boy was trained like a dog out of the sweatpants he preferred and into scratchy jeans he disliked all in the name of fitting into the local preschool dress code. That's just not fair. No one ever failed at life simply because he preferred soft pants. And don't thousands and thousands of people flock to see Mickey Mouse each year at Disney World?

Again, thanks for a great article.

Sincerely,

Zosia Zaks
Advisory Board Member
GRASP: Global and Regional Asperger Syndrome Support Group

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Senator Kerry's Autism Platform
Zosia Asks: What About Us? (unpublished)

August 23, 2004

Kerry-Edwards Campaign
1560 Broadway Suite 900
NY, NY 10036

To Senator John Kerry,

My name is Zosia Zaks. I am 34 years old. I have Asperger Syndrome, a form of Autism. As an adult on the Autistic Spectrum, I read your responses to the Autism Questionnaire with great interest.

I applaud your intention to commit resources, time, and effort toward addressing the needs of the disabled, including those with Autism. However, you left out a key component to this effort.

You said your new task force “will be composed of scientists, physicians and parent advocates.” But where are those on the spectrum in this list? Not all adults with Autism are able to articulate their concerns and views, but a vast majority of us are - contrary to stereotype.

In any effort to provide services, funding, and additional research, you must consult those who have Autism directly. It is in our best interest that our voices be heard. It is not enough to consult only those who work with us or with our family members. What we have to say is just as crucial. Those with Autism must be consulted and included in your plans.

I am on the Advisory Board of the Global and Regional Asperger Syndrome Partnership. This self-advocacy agency is run by and for those on the Autistic Spectrum. A full 50% of Executive Board Members must be on the spectrum, including the Executive Director. The Advisory Board is comprised entirely of those on the Autistic Spectrum.

GRASP is rare in its complete dedication to providing a voice for adults with Autism. Your campaign promises to help those with disabilities must include the promise to consult those of us with disabilities directly as part of your plans. For too long, people with disabilities have been silenced. But who better to speak on the condition of Autism than those who have it?

You can contact me at the information below, or you can also contact Michael John Carley, the Executive Director of GRASP, who is also on the Autistic Spectrum, for more information about our organization, our self-advocacy efforts, and Autism from the point of view of those who have it.

Again, I would like to reiterate that I am thankful that you are planning to pay attention to special education, tax concerns, scientific research, funding for services, and other matters that impact the lives of those affected by Autism. But please, hear my call to include those with Autism in the discussion.

Thank you for your time,

Ms. Zosia Zaks

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The New York Times Education Life: An Answer to Autism - Nudging Toward Normal
Zosia Asks: Do We Really Need to Train People to Wear Jeans?(unpublished)

April 18, 2003

The New York Times Education Life
229 West 43rd Street
New York, NY 10036

To the Editor,

As a woman with Asperger Syndrome who is very involved in the Autism self-advocacy community, I read the article An Answer to Autism - Nudging Toward Normal by Jane Gross with more than a personal interest. The technique of Applied Behavioral Analysis seems to be working well for the boy profiled in the story, increasing his social skills and reducing tantrums. If rewarding a silent child with candy and praise helps him learn to speak, or enables a child who wanders randomly to sit in a chair and learn the alphabet, I can't imagine anyone having a problem with these goals. I hope that if parents and professionals find Applied Behavioral Analysis appropriate for a specific child, resources are made available for this type of educational program.

I take issue though when behavioral goals slip surreptitiously from absolutely essential self-care and educational skills like speaking, dressing, paying attention to a parent or teacher, answering questions, and sharing interests to skills like conforming to the local preschool dress code. On page 33, the article mentions how, in preparation for a regular classroom setting, the boy's Applied Behavioral Analysis instructor told the boy's mother to dress the boy in jeans instead of sweatpants so he would blend in with his peers: "the praise made the scratchy denims bearable."

As the article points out, people on the Autistic spectrum can have sensory issues, preferring certain fabrics, colors, or food textures and disdaining others. Or maybe this little boy just loves sweatpants. A fundamental aspect of human dignity is the right to personal preferences and interests. It's one thing if the boy has no way to indicate he is hungry. But requiring the boy to wear certain clothes just so he can be like his peers begs the question, whose goal is that? Individuality is the source of creative freedom. And Autistic people, like all human beings, have the right to autonomy, volition, and choice.

Sincerely,

Zosia Zaks
Advisory Board Member
GRASP: Global and Regional Asperger Syndrome Support Group

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