It is routine to see references to very high functioning persons in the mainstream media. On a web site called TopTenz the site owners have compiled a list called Top 10 People with Autism Known Today. Not suprisingly the list comprises those with very high functioning autism. It is difficult to understand why some of these people have mental health disorder diagnoses but they do. What is unfortunate about these portrayals is that they do not represent those who are more harshly, particularly those who are most harshly, affected by autism disorders. The list includes, among others, Daniel Tammet, Temple Grandin and John Elder Robison. All the names on the list are successful, creative people who have functioned very well in society, business and the arts. One possible exception is Thomas McKean who was institutionalized for a period but emerged from that institutionalization and is an autism advocate. Even his story though is not reflective of those who in fact remain institutionalized and cannot advocate or, in many cases, communicate with the world.
Why some on this list of distinguished, accomplished individuals even have an autism disorder diagnosis when they are so successful in life is beyond the understanding of this humble father of a severely autistic 15 year old boy. Unlike some on the list my severely autistic son was not diagnosed at age 40. He was diagnosed at age 2 because his challenges were obvious and severe at a very young age. My son has nothing in common with the geniuses and talents on the Top 10 People with Autism Known Today list. My son`s challenges are not known though to the general public which is very familiar, as this list demonstrates, with the Tammets, Grandins, Robisons and others of great ability.
My son has much more in common with those persons with severe autistic disorder who live out their lives in psychiatric hospitals and general hospital wards. My son has limited communication skills and limited understanding of the world. He engages in self aggression and can not tell us if he is sick or hurting other than through his frustrations. He occasionally engages in public meltdowns and sometimes meets the stares of those who do not understand. The public that sees a child or youth engaged in a public meltdown does not see autism, the public sees autism in the faces of gifted individuals splashed relentlessly on the media`s pages and sites. The public will see instead a spoiled child, incompetent parents but they will not see a child with autism because, after all, persons with autism are very smart people accomplished in business, science, literature, rock music organizations and the arts.
There is a top ten list of known autistic persons. There is no list representing those who are uknown, those persons with autism who disappear in a Nova Scotia blizzard or wonder into automobile traffic or drown in a neighborhood pool. There is no list of autistic persons who can not tell their parents why they don`t feel well.
The unknown autistic persons are those with the most severe challenges but the general public doesn`t see those challenges in web site lists or in the mainstream media. The media does not inform the general public about the realities of severe autism. There is no list for the invisible autistic persons who have no flashy skills to show the world. And the public remains fundamentally ill informed about autism disorders.