~Rumi

All day I think about it, then at night I say it. Where did I come from, and what am I supposed to be doing? I have no idea. My soul is from elsewhere, I'm sure of that. And I intend to end up there...Who looks out with my eyes? What is the soul? I cannot stop asking. If I could taste one sip of an answer, I could break out of this prison...I didn't come here of my own accord, and I can't leave that way. Whoever brought me here will have to take me home.

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09 March 2009

World Autism Interviews: Phil Schwarz/New England



Interview with Phil Schwarz


Welcome to the first of a series of Autism Interviews.

Today's interview is with Phil Schwarz. Phil is the Vice-President of the Asperger's Association of New England, as well as a board member of the Autism National Committee. He is the father of an autistic son and is an Asperger's autistic adult himself. Phil works as a software developer.

E: Tell me about your family and your journey into the world of autism.

Phil: I'm 52, Aspie, married to Susan, 55, nonautistic; we have a son, Jeremy, 18, autistic, and a daughter, Rachel, 20, broader phenotype. I'm a software developer, Susie is a health care manager at a nonprofit neighborhood health center, Rachel is a sophomore at Sarah Lawrence College in New York City, and Jeremy is midway through an ungraded high school program for teens on the autism spectrum.

Autism has been in our family for a long time -- undiagnosed almost-certainly-Aspie relatives and relatives with "Cousin" conditions on both sides of both my and Susie's family. But we only really discovered it when Jeremy's toddler-age development became atypical in autistic ways: stalled development of speech, lots of repetitive simple sensory play, little motivation for social interaction or shared attention.

We didn't know much about autism to begin with, and feared the worst. Our initial encounter with reliable information about autism was actually a relief of those worst fears: it wasn't degenerative, institutionalization was not a foregone conclusion, nor was severe intellectual impairment. We were very lucky to be able to get Jeremy diagnosed by Margaret Bauman, one of the few real experts in the field back in the early 90s.

The more we read about autism, the more we learned about forms of autism without impairment of expressive speech like Asperger's syndrome. And the more it became clear that AS was a coherent explanation for my own developmental trajectory. So 10 months after Jeremy was diagnosed, so was I.

We were also very lucky to have found the few Internet autism resources in existence in those early years, such as the St. John's University Autism Listserv, and in particular to have begun to meet several of the few autistic adults on the 'Net in those days. I think the two pieces of writing which most strongly influenced my emerging response to autism were Oliver Sacks's biographical essay about Temple Grandin, "An Anthropologist on Mars", and Jim Sinclair's landmark essay "Don't Mourn For Us". (Now, many years later, in this age of YouTube, I would place Amanda Baggs's "In My Language" alongside "Don't Mourn For Us" as essential reading-and-viewing for families new to autism.)


E: As you know, autism is quite a political topic these days. There is both an Autistic Community, as well as a cure-focused community. Where do you stand and why?

Phil: Heh. I'm definitely part of the autistic community by virtue of simple biology, as is most of my family. (I joke that Susie is our token NT.) It simply couldn't be any other way.

I think the biggest mistake the autism-curebies make, is that they fail to recognize the distinction between handicap secondary to autism, and autism per se. Lack of expressive speech is a handicap secondary to autism. Autistic ways of thinking, sensing, expressing emotion, allocating attention and interest, and so on, are the real core elements of autism. When we "evil neurodiverse" advocate against curing autism, it is the latter that we seek to protect from eradication. We have *no problem* with developing and implementing legitimate, caring, humane measures to mitigate the handicaps secondary to autism. That mitigation can be done in a way which empowers and builds self-esteem and comfort and ease with one's own identity, or it can be attempted in ways which run roughshod over those things. We object to the latter, but despite what those who fear our empowerment as encroachment upon their hegemony claim, we *support* the former.

I honestly don't understand the degree of animosity and anger, of black-and-white, false-dichotomous thinking, that goes on in the landscape of autism politics. I think the technical term for the state of autism politics is "Way F*%#ed Up". I wrote about that, more than a dozen years ago, on the *St. John's University Autism Listserv (*click here to read Phil's essay).


E: We are both parents of children who are on the spectrum. Please tell me about your children, as well as how you felt when your son was diagnosed. What do your children need most in order to reach maximum potential?

Phil: I think I answered some of this question by going on too long (heh, love me, I'm an Aspie) in answering the previous questions :-).

I think we were *relieved* to learn what we learned, when we finally got reliable, legitimate information about autism, and when we met and became friendly with adult members of the autistic community, whose own personal histories often gave us glimpses of what Jeremy's future -- potential as well as problems -- might be.

Susie had a harder time coming to terms with autism as not being entirely a bad thing. I think she had more solidly formed nonautistic expectations that she had to let go of, than I did. I do sometimes wonder about the greenness of the grass on the other side of the fence, what it would have been like to raise a completely (profoundly - heh) nonautistic son or daughter. (A challenge, in some respects, for a father with an Aspergerian temperament!)

I think the most important thing for Jeremy is to not be underestimated -- because of the autism label, because of the way he interacts socially, because of the areas of social knowledge that remain more foreign to him than to nonautistic age-peers, because his self-confidence can sometimes be vulnerable. For Rachel, it's to become organized and confident enough to use the considerable intellectual talent she has been blessed with.


E: What is important to you as an autistic adult?

Phil: Finding and maintaining balance and moderation, in things that overfocus can so easily lead me to become unbalanced in. Being there for my wife and children, sometimes in ways that aren't innate or intuitive for me, but that are important to them.

E: How do you involve yourself in bringing about the political change and progression you would like to see for individuals who are on the autism spectrum?

Phil: I do what I can by serving in the lay leadership of a few progressive autism organizations: the Asperger's Association of New England, where I serve as vice-president; the Autism National Committee, where I serve as a board member; Autism Network International, where I serve on the conference program committee. I also serve on the board of my local chapter of the Autism Society of America, in the (some people tell me vain) hope that working within that organization from the bottom up, I can help change it for the better. The ASA is the humongous aircraft carrier among the flotilla of autism organizations. It takes many tugboats to turn an aircraft carrier around. I try to be one of the tugboats pulling the aircraft carrier in the right direction.

E: What do you feel is the greatest obstacle toward bringing about these changes?

Phil: That so much of the media, mind-share, and money in autism politics is in non-progressive hands. That the picture the general public gets of autism is still badly distorted. That there is so much misinformation, misconception, myth, and quackery surrounding autism. The history of autism, ever since Kanner and Asperger, has been one senseless frantic chase for silver-bullet "cures" after another. That has to stop. It isn't doing us any good. Too many autistic children age into adulthood without adequate support, without adequate employment, education, housing, access to quality legitimate health care, and opportunities to live fully in their communities as consumers and citizens. That has to change.

E: If you could share only one message about autism with the public, what would it be?

Phil: That autism does not *have* to be a tragedy. Stop. Think. *Listen* to autistic people themselves. Read and view what autistic self-advocates have written and filmed. Understand that there are self-advocates at all points on the spectrum, not just so-called "high functioning". Understand the distinction between handicap secondary to autism, and autism per se -- then go forth and mitigate the handicaps, nourish and support the autistic ways of thinking, sensing, feeling, and encountering the world, and help your autistic loved one grow into living fully and capably as an autistic person.

Finally -- speaking as both a parent and a self-advocate -- I urge parents, in particular, to read this short and eloquent essay by Bev Harp (click here). And then to consider how we can become allies.

Check out Phil in the documentary film trailer for Loving Lampposts.

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