independent living
on the autistic spectrum

submitted posts from the Advocacy forum
published with permission of the authors

Table of contents

0. The subject matter of the Advocacy forum

1. Marla Comm: Barely making it in the community
Marla Comm has high functioning autism and Tourette's syndrome. She is living independently and holds a job, but is barely making it without help other than of her family, who don't understand her disability. The combination of several factors (living circumstances getting worse by the year; lack of understanding even by those who are close to her; total absence of services, such as assisted living or job advocacy, for autistics functioning on a higer level) makes her wonder how long she can go on like this. A story of courage and despair, illustrating how high functioning autistic people can fall through the cracks of the system.

2. Phil Schwarz: Cure, Recovery, Prevention of Autism?
Phil Schwarz has a mild variant of Asperger's syndrome. He is also the father of an autistic child. From this perspective he writes about what it is like when all people think about is curing autism, as opposed to autistic people continuing to exist and having good and productive lives.

3. Marla Comm: Mainstreaming doesn't always work
Letter to the editor published in the MAAP newsletter in 2002, reminding us that all "high functioning" autistic people aren't actually so high functioning, and that many are suffering.

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The Advocacy forum: what it is about

Topic: Advocating for yourself and for each other. Problems, solutions, political issues, ideas, etc.

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Marla Comm: Barely making it in the community

I am a high functioning but severely autistic woman struggling to lead some semblance of an independent life in a world not meant for people who are different.

As an adult living in the community on my own, I carry the same load of responsibilities as every one else. I work as a regular employee in a place where staff accept my limitations but where I nonetheless have to work under the same pressure in the same overstimulating surroundings as the other workers. Outside work there's the shopping, banking, making appointments, repairs and other duties. At home there are all the housekeeping chores to do: trivial tasks for the average person but monumental feats for someone whose hands and brain refuse to work together and who feels like smashing the whole place up simply because the texture of the kitchen counter irritates her hyperacute touch. With an income barely half that of others my age I grapple daily with the impossible task of putting the proper food on the table, paying bills that go up each time and meeting the new expenses dumped on me by financially strapped governments charging for previously subsidized services.

When I finally get some free time after a demanding workday and chores that take so long to get done, I end up spending that time fearing for my life as I brave the dangerous crowds my few outside activities bring me into contact with.

No matter where I am I'm exposed to the same frightening goings-on and talk that everyone else contends with. Last, but not least, there are the countless mean and uncaring people I confront each day. With nothing to shield me from them, I have to deal with the mistreatment on my own.

As if living in the community weren't hard enough, I'm also stuck in a particularly tough living environment: an overcrowded, rough city in a country that's one step away from breaking up and where it's hard to find anyone who speaks English. The seasons here are so erratic that merely coping with them uses up a good portion of what little energy I have. No matter where I live, the nineties are times of poverty and chaos. On top of all this I spent much of my life among particularly mean people. And with my parents denying my disability and bringing me up as if I were normal, no early interventions and an especially severe handicap complicated by Tourette's Syndrome and personality problems, I had the odds stacked against me from the start.

I not only have to manage in this forbidding environment, but have to do so with next to no help. Try as I may, I can't get anything more than a measly hour of homemaker service per week. Even that is given very reluctantly and is always one step away from being snatched away. Service providers see that I'm suffering, not looking after my apartment properly and rotting away in that apartment with not enough food and nothing to do in my spare time. Yet they just sit there and let it happen. They may sweet talk me with their empty words of sorrow, but refuse to do anything because I'm a bit too functional to qualify for aid.

Asking someone like me to do all these things is like asking someone to dig a ditch with nothing more than a kitchen fork. After spending enough time straining to do a job without the proper equipment one gets worn out. That's what's happening to me. In my forties I find myself used up and on the verge of giving up. Years of being poor finally got to me. Even more depressing is the knowledge that I'll be spending the rest of my life in even worse circumstances. Nonsocial to begin with, I find myself liking people even less after years of being treated like dirt. I've grown so bitter and angry, my behavior, which should have improved with age, is getting more disruptive. Wanting so much and not being able to have it is also taking its toll. Now I'm so frustrated with unmet needs I care about little else. Patience is also wearing thin after spending years struggling with chores and not being able to do them properly. As the world becomes more complex and responsibilities even harder, I'm getting further and further behind. I'm so overwhelmed I'm on the verge of collapse. Leisure time, which should be relished, is even adding to my misery. It's disheartening to be sidelined from the few activities I enjoy because of the dangerous kids who monopolize them.

I wonder how much longer I can go on like this. I dread what might happen to me if help doesn't come soon. I see myself becoming too disturbed to work and too apathetic to look after the few selfcare chores I can handle. It hasn't quite reached that point yet, but I feel myself going bit by bit.

If only someone could help me get the proper food at prices I could afford, help me keep the apartment clean, advocate for me when I run into problems with people, find me ways to do the sports I enjoy in safety and offer regular support when I'm upset, I'd be able to remain in society and not only continue working, but be even more productive and less hostile to the people around me. On the other hand, if I continue to left to rot away, I'll have no choice but go to an institution and be an even bigger burden on society.

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Phil Schwarz: Cure, Recovery, Prevention of Autism?

I think that most people who seek a "cure" for their loved ones' autism do so with the best of intentions: they see their loved ones having difficulty or inability to function, and want to help them overcome those difficulties or inabilities.

However, the road to Hell is paved with the best of intentions.

They make the fundamental mistake of confusing autism itself -- which is a set of differences in the way the brain and mind are organized, expressed in different proportions and intensities in each autistic person -- with the impediments that arise secondarily to those differences, also in varying proportions and intensities.

Saying "I want my child to learn how to learn", "I want my child to learn how to speak", "I want my child to be able to stop self-injurious behavior", "I want my child to be able to overcome the sensory distress he or she experiences", or "I want my child to be better able to interact with, and understand the behavior of, neurologically typical people" is very, very different than saying "I wish my child were not autistic".

The statement "I wish my child were not autistic" implies, at least to me as a parent, and also as an inhabitant of the borderlands of autism myself, that the parent making the statement seeks a change in the inner essence of who the child is: how he or she apprehends the world and organizes it and recreates it in his or her mind's eye, as we all do in our own way.

That is pretty fundamental stuff.

Would we feel as comfortable with the following statement, about equally fundamental stuff of which the self is made: "I wish my child were not female"? Such sentiments are frowned upon in many cultures these days, and with good reason; sadly, they are still prevalent, harbored in secret where frowned upon, and expressed overtly where not.

What is really going on with that latter statement? Being female is not considered, at least in the cultures that frown upon that statement, a disability, overtly at least. (Although it could be argued in practical terms that it is a severe disadvantage, as long as one's earning power is 59 cents on the dollar because of it.)

So why would a parent harbor such a feeling, even covertly?

I think because they had, and still have, unmet expectations. Perhaps a boy would be easier to relate to, to bond with -- especially for a father. Perhaps the family has no boys. Perhaps the parents really really wanted a boy.

In any case, most of us parents eventually learn to lay such unmet expectations to rest, and love our children who arrived contrary to those expectations with all our hearts.

Perhaps some people wish they had a boy because a boy can be more successful in this society.

Most of us react to the unfortunate but stubbornly persistent fact that that is true, by helping our daughters succeed: giving them the moral support to enter heretofore-boys-only realms of endeavor like math or science or sports or upper management. We easily recognize, isolate, and work to mitigate the factors that pose impediments without confusing them with the aspects of being female that is the inner essence of who our daughters are as persons.

It's easy when the factors posing impediments are clearly wrongs in the society.

Now go back to the statement "I wish my child were not autistic". Here, there are attendant difficulties or inabilities in functioning. It is not so easy to conclude that the factors posing impediments are all clearly wrongs in the society. (Although, as an aside, far more should be: this society is far too intolerant of differences in social interaction, and far too unaccommodating of differences in sensory functioning.)

It is so easy to lump the difficulties and inabilities in functioning together with the inner gestalt, the way of being, and devalue the whole person as they are, difficulties and all, in the process.

There is an incredible amount of devaluation based on low societal expectations about what autistic people can accomplish. Autism itself is still considered shameful by far too many.

It is very much more difficult for most parents to lay to rest unmet expectations about neurologic typicality, and dreams based upon those expectations. Jim Sinclair's essay Don't Mourn For Us, which states the very real need to lay those expectations and dreams to rest in stark terms, evokes lots of hostile reaction.

Far too few have the clarity of vision to separate the disabilities that are secondary to autism in varying proportions and intensities, from the stuff about autism that is fundamental to who one is and how one apprehends the world.

Here, where clear vision about recognizing and isolating and mitigating the secondary disabilities is so critical, it is too easy to lump all of being autistic together, and consider not only the disabling factors, but the fundamental way of being, as "the enemy". Far too many of us do that.

Please, please try to make that distinction, and not lump it all together.

One of my friends from ANI (Autism Network International, a self-advocacy and social-networking organization of, for, and led by autistic people and their loved ones) said it best: Fight autistic disabilities, not autism.

I understood this to be what Temple Grandin meant when she told Oliver Sacks that if she could snap her fingers and cease to be autistic, she would choose not to do so, because she would no longer be herself anymore.

Yet she clearly recognizes, isolates, and works to mitigate the difficulties she encounters, putting her sharp engineering horse-sense to work to solve sensory problems and to engineer conscious, cognitive workarounds for areas of understanding of neurologically typical social interaction in which she lacks neurologically typical intuition.

My dreams for my son Jeremy, who is 4 1/2 and has a diagnosis of PDD, are that he may grow up to be as in tune with his life, his work, and his very being, as Temple is with hers. And that is my wish for my daughter Rachel, who is 6 1/2 and has no such autism-spectrum diagnosis, as well.

Having said that, I come to the path we have chosen with respect to intervention for Jeremy that seems to alienate the zealots on both sides of the cure/recovery/prevention debate from me.

Jeremy is in programs that use discrete-trial teaching methodology. We view discrete-trial teaching as a means for him to bootstrap the learning process. He has made remarkable progress in learning how to learn. The incremental cognitive steps and abundance of concrete instances with which to populate conceptual sets are exactly what his kind of mind can leverage best. He also loves the benign ego-trip of boisterous recognition that he's accomplished something when he gets stuff right :-) .

His kind of mind and his kind of ego and his kind of boisterous enthusiasm are exquisitely, fundamentally human -- as much so as other kinds of mind and ego and affect.

I have no intention to allow anyone to attempt to change those things about him. I do want him to learn how to understand and interact with and work together with other kinds of mind, other kinds of ego, other kinds of affect, and to do so while holding high the value of his own kinds, however small a minority they may be in. There is a vast difference.

The result is that he will probably never be "indistinguishable from his peers", or whatever it is that the folks who buy the whole nine yards of the Lovaas bandwagon set as the criterion for "recovery".

Does that mean he will not have succeeded to the best of his abilities?

Hardly.

I think he will be far better off than a kid who has the goal of indistinguishability from his peers set before him. He will not be afraid to be different, when his gut and his mind make him so; yet he will learn how to recognize what those differences are, I hope, and be equipped to make conscious choices about which of those differences he wants to construct cognitive workarounds for.

I get shit (sorry, but I need to use the technical term in the interests of precision :-) ) from the anti-Lovaas people because Jeremy is doing discrete-trial programs, and they cannot see that it is possible to leverage such programs where and when they truly help, truly serve as tools for navigation, without buying the whole nine yards of the cure/recovery mentality that is epidemic in the Lovaas community.

And I get shit from the pro-Lovaas people precisely because I do not buy the whole nine yards. I don't believe in cure; I don't believe in recovery; (can some of you hear John Lennon singing "I don't believe in Beatles" here? :-) ); I only believe in Jeremy, and us, his family and his teachers, and in what he can do to make sense of the world and a path for himself in it.

And as for prevention: I believe autism is such a subtle mix of neurological atypicalities, that truly preventing it at a genetic level would prevent not only the mix of disabilities that can arise from it, but also genius, humor, talent, and valuable different ways of thinking and feeling and making art and science that can also arise from those same neurological atypicalities.

Most of the autistic people I know are among the most intrinsically human of people I know. The species would be far, far poorer without people like them.

Let's do the genetic, neurobiological, neurochemical, and neurophysiological research into the etiology of autism in order to engineer new ways to mitigate the sensory difficulties, and understand and leverage the atypical cognitive and affective and learning styles, but let's not mess with the gene pool by using genetic markers to avoid having babies or to abort pregnancies.

(Let's do the research into non-idiopathic causes of disabling autistic symptomatology, so that they can be avoided; but that is an entirely different question.)

So I am for maximizing developmental progress, but I think viewing it in terms of "recovery" does it a disservice; and I am for mitigation of disability, but I think viewing it in terms of "cure" does it a disservice; and I am for research into etiology that is applied towards maximized developmental progress and mitigation of disability, but I think viewing it in terms of "prevention" does it a disservice.

And I truly do not understand why more people are not capable of laying down their ideological battle-axes and joining me in the middle ground.

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