Autistic People Speaking About Autism · 2005-08-04 08:30

The following letter addressed to Autism Speaks and NBC was written by Phil Schwarz, Vice-President of Asperger’s Association of New England, and Board Member At Large of the Massachusetts Chapter, Autism Society of America. Phil is an adult with Asperger’s Syndrome, who is also the father of an autistic son, and knows autism from both the first-person and parental perspectives. Here Phil articulates the need for full, respectful inclusion of autistic citizens in public discourse and policymaking about autism, and provides an insider’s perspective on the concept of “cure.”


——- Original Message——-
From: Phil Schwarz
To: info@autismspeaks.org
Sent: Sunday, February 20, 2005 3:31 AM
Subject: Autistic people speaking about autism

To the proprietors of autismspeaks.org, and the producers of the recent week of programming on NBC and its affiliates:

As a parent of an autistic pre-teen, and an adult with Asperger’s Syndrome myself, I urge you to add an important—and underrepresented—set of voices to the heightened visibility that any follow-ons to your week of autism programming will give to autism in the eyes of the mainstream American population.

That set of voices is those of autistic self-advocates.

There were segments featuring autistic adults in the week’s programming, most notably Temple Grandin and Vernon Smith, but also others at various points along the autism spectrum.

However, as far as I am aware, none of the profiles of these adults touched upon autistic self-advocacy.

There is an increasing number of autistic adults empowered by technology—computers, access to the Internet, assistive technology such as text-to-speech synthesizers, and so on—who are writing and speaking and providing much needed perspective on what helps and what does not, and calling attention to areas of struggle in day-to-day living that need much more attention and funding than they get, relative to the attention and funding dedicated to searching for a “cure” for autism.

Sometimes the perspectives of autistic self-advocates diverge from those of non-autistic parents of children diagnosed with autism and from the professionals and clinicians to whom the parents turn.

Many parents, professionals, clinicians, and mainstream autism organizations characterize autism as a monolithic entity, an enemy which must be defeated.

Most autistic self-advocates, on the other hand, myself included, make a distinction between autism itself, and the specific impediments secondary to autism with which we must deal.

This is the reality that we who live the life—at all points on the spectrum—know: autism is pervasive. It involves aspects of us that are fundamental to our identity as human beings: personality, temperament, processing of emotions, sensory and social preferences, aesthetic sensibilities, and cognitive style. It is impossible to remove all traces of autism from an individual without erasing and overwriting personality and identity.

For this reason, most autistic self-advocates do not seek a “cure” for autism.

But it is possible to overcome the specific impediments secondary to autism, while remaining intrinsically autistic. This important observation has gotten lost in the shuffle, in almost all the speaking and writing about autism done by non-autistic people.

Many parents who want to believe that theirs is somehow a “normal” kid trapped under a shroud of autism that could somehow be removed by a “cure”, are in denial about this. Some of them are confused and frustrated that after years of intervention, their kids may have cleared the really big hurdles—such as acquisition of speech, literacy, written communication, awareness and reasoning about behavior and personal hygiene—but are still not “normal” in their patterns of play, interests, interaction with peers, and so on. (See, for example, Jane Gross’s recent New York Times article.)

But many parents come to realize the truth of what we self-advocates have been saying all along—that at the end of the day, no matter how capable and articulate they have become, their kids are still autistic deep down inside.

And they realize that that is okay—that autism is not the monolithic “enemy” that it is made out to be. They realize that at a certain point, divergence from “normal” is not only not a defect, but something that must be protected and empowered. These parents realize that as their kids mature, their kids’ issues will ultimately be the same issues that we self-advocates want priority to be given to.

My experience, in more than a decade of contact with people at all points on the autism spectrum and with their parents and family, is that this realization is much more easily arrived at by parents and family of so-called “higher functioning” autistic individuals than it is by parents and family of so-called “lower functioning” autistic individuals. The “high” vs. “low” distinction generally seems to revolve in most people’s minds around the absence or presence of capabilities and skills needed to live a more independent life. (I know far too many people with a mix of capabilities and impediments that defy and put the lie to such a simple distinction, but that is a whole ‘nother discussion.)

Those with reason to have serious worry about their loved ones’ ability to lead an independent enough life to articulate their basic needs and get them met respond to statements such as “autism is not 100% through and through an evil tragic thing” with incredulity: they say that autism is as surely completely bad as the sky is blue. Do self-advocates purport to tell them that the sky is not blue?!

Well, in reality, the sky is not blue. It is black and starry. But during the day, the sun so dominates the sky, and floods the atmosphere with so much energy, that all we see is blue. Once the sun sets, we see what the sky is really like.

In the same way, if a family’s biggest worries for their autistic loved one center around the absence of the ability to live an independent enough life to articulate and get basic needs met, those worries flood everything else out. All they see of autism is the issues and deficits that dominate.

But as those issues are mitigated—in one way or another—and cease to dominate all their focus on autism, many parents and families begin to see the broader reality, that not all difference in autism is defect.

Some parent activists seek to discredit or declare irrelevant the messages and voices of adult self-advocates who are articulate in written communication (and in some cases in spoken communication as well). They seek to label all such self-advocates “Asperger’s”, and then declare that the issues of Asperger’s people are irrelevant to parents of autistic children.

This is nonsense. Worse, it is lousy strategy. Even if all of their hopes and wishes for outcomes for their own children that can be met are met, their own children will grow into adulthood facing the same issues that we struggle with today—in higher education, in housing, in employment, in household management, in living in the community. It is in these parents’ own best interests—and those of their kids!—to pay heed to our messages, and get on our side of the issues we struggle with.

I urge you to include in the information you give your viewers resources which provide access to our perspectives and messages as self-advocates. I’ve included a list of some suggested resources to start with below.

Phil Schwarz
Vice-President, Asperger’s Association of New England
Board Member At Large, Massachusetts Chapter, Autism Society of America

Web resources

autistics.org, and its library of essays

neurodiversity.com’s (extensive!) collection of essays

The website of Autism Network International (ANI), a self-advocacy and mutual support organization of, by, and for autistic people, founded in 1992 by Donna Williams and two American autistic adults; ANI holds an annual conference/retreat, Autreat

The website of Autism National Committee (AUTCOM), an organization that focuses on the civil rights of autistic people, particularly those who face impediments to articulating and getting basic needs met

Two websites which put a human face on autism, from the perspective of those who live the life: The Autism Picture Page, and the Autistic Adults Picture Project

The writings of Jane Meyerding, Jim Sinclair, Amanda Baggs, Frank Klein, Joel Smith, Michelle Dawson, Patty Clark, and others

Jane Meyerding

Jim Sinclair: Jim’s 1993 essay Don’t Mourn For Us is still a touchstone of the self-advocacy movement. Along with Oliver Sacks’s essay about Temple Grandin, An Anthropologist on Mars, Don’t Mourn For Us was a formative influence in my own thinking and response to autism as first my son, and then I, were diagnosed.

Amanda Baggs, and many articles at http://www.autistics.org: Amanda has compiled an extensive
list of writings by autistic people; see also her essay Rewriting History for Their Own Ends: Cure Autism Now and The Mind Tree. Like the people she writes about in that essay, Amanda is non-verbal—but armed with a keyboard, she is articulate and penetrating.

Frank Klein: Frank manages a Yahoogroups mailing list, AutAdvo, that has become an active forum for autistic self-advocates.

Joel Smith

Patty Clark: Patty is one of a growing number of autistic adults who have been elected to the boards of local chapters of the Autism Society of America. This is an important and much belated development: in comparison with other disability communities, the major organizations in the autism
community have long lagged behind in terms of participation in their governance by the people the organizations are supposed to be serving. This situation is slowly changing in the ASA, but not yet in many other major American autism organizations, some of which were featured prominently in the week of autism programming. (Note to readers: Patty Clark passed away on July 17, 2005.)

Michelle Dawson: The lack of meaningful participation by autistic people in the governance of autism organizations is particularly blatant in Canada, and that is one of the issues Michelle addresses in her powerful, well-researched and articulate writing. Michelle also turns a critical eye towards the goals and claims with which ABA-based autism interventions are sold to parents and to funding sources, and that has drawn ad-hominem attacks upon her, including some which represent serious lapses in professionalism on the part of academicians who should know better.

Books

Elijah’s Cup, by Valerie Paradiz. Simon & Schuster Free Press, 2002. ISBN 0-7432-0445-X.
A parent’s narrative, but with a big difference: Valerie understands and embraces the perspectives most self-advocates have about autism and about what needs to be done for autistic people, and she explores the history and emerging culture and community of people on the autism spectrum.

Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum, ed. Stephen Shore. Autism Asperger Publishing Co., 2004. ISBN 1-931282-58-7.
All of the co-authors of this book are individuals on the autism spectrum. Some were deemed “low functioning” in childhood, some were characteristically Asperger’s. All share the general perspectives about autism that I have described in this e-mail. I contributed the chapter on collective self-advocacy and the building of a network of non-autistic allies; it was an outgrowth of a workshop I led at Autreat 2003. The proceedings article for a follow-on workshop I led at Autreat 2004 is at http://www.autistics.org/library/allies.html. Both might help crystallize the areas in which the perspectives of most autistic self-advocates diverge from the autism-as-monolithic-organic-disease, cure-seeking approach taken by the mainstream autism organizations, and the obstacles we face getting our side of the story heard.

Reproduced by permission of the author

Comments


  1. Excellent message, Phil, one that really needs to be heard. Let’s all work to get it out there and listened to. — Clay    2005-08-05 00:22    #