The Invisible Autistic Adult



Lately I've been thinking a lot about the Old H.G. Welles tale of the invisible man and the short-lived television show of the late 1950s that it inspired. I remember the man completely wrapped in bandages. When the bandages were removed there was no man that you could see only an invisible man.

I've been thinking about this because sometimes I feel like the invisible man. I am 47 years old and mildly autistic. Much is written about autism in the news media and there are a variety of books and academic literature written on the subject. Almost all of this deals with small children. Very little of it deals with adults. Autism is seen as a problem of childhood, not of adulthood or adolescence.

People talk about special schooling, services and treatments for autistic children. Most of these seemed to be aimed at children and not adults. ABA (applied behavior analysis) is one of the most popular treatments for autism. The cost of this treatment is quite high, often paid for at taxpayer expense. One of the arguments in favor of this treatment and the justification of the expense is that the cost of an untreated autistic who will have to receive welfare benefits or live in a group home will cost the taxpayers far more money over their lifetime than what ABA costs.

Yet, this pattern of rarely, if ever, hearing about adults is just as true specifically in the realm of ABA as it is for all of the autism establishment in general. Ivar Lovaas published a well-known study in 1987 that suggested that autistic children who had undergone the most intensive ABA therapy were the ones most likely to succeed in a mainstreamed first grade. In 1993 a follow-up study was published that purported to show that the children had maintained their gains and in the words of the behaviorists were "indistinguishable from their peers". While they are not using the word 'cure' this seems to me to imply that autistic children can lead an absolutely normal life, no different than someone who is not autistic. Yet, the children who participated in this research are still too young to have been followed into adolescence or adulthood.

The behaviorists started practicing ABA long before the 1987 study was published. Some of the children who have undergone this treatment and were involved in some the earliest research studies must be my age or close to it. Yet we don't hear what became of them. They are yet another example of the invisible autistic adult.

The reason I am so curious about all of this is that I think of my own life. In many respects, I had a childhood not dissimilar to the stereotypical autistic child that one hears about in the media. At age two-and-a-half I was almost completely nonverbal, I tantrumed, I rocked, I smeared feces on the wall. I had a childhood in special education with few friends and very profound problems. Unlike Peter Pan in the old James Barry story I did not remain a child forever. I was mainstreamed in regular school in early adolescence. I had problems making friends, I was sexually harassed by junior high school femme fatales, I made reasonably good grades for a bit, but it was not long before adolescent angst set in and my grades started to deteriorate. I was not able to find any girl who wanted to be my girlfriend. I went to college, got mediocre grades, barely graduated and my ambitions to go to graduate school did not pan out.

After school, I did not fare much better. I was only able to get menial jobs and have been fired from more than 20 jobs. In my early 30s I started learning the field of medical transcription and have had some success in holding down jobs in this field.

As of this writing (04/13/03) I am still working as a medical transcriptionist. However, I am not a statutory employee. I work at home as an independent contractor. I pay double the social security taxes that a statutory employee pays to get the same thing back when I retire. I get no paid vacations and no paid holidays. I get no benefits at all. I am on my parents' medical plan as a disabled dependent. When my parents die I won't have that anymore. My parents are in their 70s and they won't live forever. I still have never had a girlfriend. I still self-stimulate, have few friends, have a loud voice, have trouble maintaining eye contact and have a bad handwriting problem. I look at other people I know around my age. They have really good jobs with benefits, making far more money than I do. They are married with families. They have friends. Clearly, I am not indistinguishable from my peers.

Some parents of small autistic children may read this and find my account somewhat bleak. However, I suspect that I have been far more successful than the vast majority of those on the autistic spectrum. I hear stories of persons on SSI, unable to work. I hear of much more unpleasant scenarios of people unable to speak, living in group homes or institutions.

It seems that the autism establishment is oblivious to the problems that autistics face in adolescence and adulthood. We seldom hear about the problems of celibacy, unemployment and so forth. I wish we could hear more about them and hear more about adolescents and adults. I have news for people interested in autism. We autistics are not Peter Pans. We go through adolescence and adulthood just like other people. I am not the invisible man. I am not an H.G. Welles character or a TV show. You can put those bandages on me. When you take them off, I am a visible flesh and blood being.

If any ABA therapists or other persons in the field of autism happen to read this I have a question for you Where are the adults I rarely hear about? Are they indistinguishable from their peers? Why do I hear so little about them in the academic literature and media? Is it because children are more interesting to the media and popular press? Is it because you don't want parents of small autistics to know what the true prognosis is? Is it because perhaps the statements that are you saving future autistic adults from a life on the dole and institutionalization simply aren't true? I am very interested in the answer to these questions.