Thursday, December 31, 2009

Autism Reality On The Last Day of the Decade:The Autism Spectrum Concept Has Been Harmful, Part I

On this last day of this decade, as we prepare for 2010, and all that the next decade will bring,  it has become apparent that a major autism development of the last decade has been the growth of the Autism Spectrum concept.

The growth of  the Autism Spectrum concept has caused considerable harm to the interests of many persons severely affected by  Autistic Disorder, especially the 75-80% of persons with Autistic Disorder who are intellectually disabled or cognitively impaired. For these severely autistic their life realities are obscured and even hidden by the Autism Spectrum and by some high functioning, high profile media attractive persons who define autism in the public mind.

The Autism Spectrum concept has created confusion  about what constitutes "autism".  Some members of the public, talk show hosts, and  comics, joke about autistic persons as spoiled children who would have been given a good spanking back when they were kids. These people obviously do not see the children with Autistic Disorder who bite themselves, chew the insides of their cheeks, bang their heads until they cause injury, starve themselves out of aversion to food tastes and textures or wander away from their homes, some to be lost forever.  They see some very high functioning persons with no readily apparent disabilities who are "on the autism spectrum".

Yes, the mainstream media publishes reports when an autistic child or severely impaired adult goes missing. When an autistic Nove Scotia boy disappeared before a snow storm, and died of hypothermia, the media and Canadians reacted with genuine compassion and feeling for the poor boy and his family. But even then there was little in depth coverage of how many autistic children, and adults, go missing or the steps that have to be taken to ensure that others do not. Even the tragic death of  the young Nova Scotia boy did not prompt the mainstream media to thoroughly explore the harsher realities of autism disorders.

By contrast the media has been obsessed with promoting images of very intelligent, high functioning persons "on the spectrum" as the expression is used today.  CBC has many times featured Michelle Dawson, a person with "autism",  who excelled in the  challenging work environment of Canada Post and is now an autism researcher. CNN on several occasions featured  Amanda Baggs, a  very intelligent person who did not have an autism diagnosis earlier in life and who attended a school for intelligent,  gifted youth.

Today Alex Plank and Ari Ne'eman are the newer faces of  the "autism spectrum", two very intelligent young University students with Aspergers Disorder who tell the world what it is like to be Autistic, who take it upon themselves to tell the world that Autistic People do not want to be cured.   Mr. Ne'eman is an obviously intelligent gentleman with very highly developed communication and organizational skills.  He functions and operates very well in the complex world of Washington politics  and communicates regularly with the most influential media institutions in the world.  To the general public, and to the mainstream media,  Dawson, Baggs, Plank and Ne'eman are what they see when they close their eyes and visualize what it is like to be  "autistic".

It is no wonder that sufficient funds are not made available to support autism research, to find causes of, and cures for,  autism disorders.  The public  does not see the harsher realities of autism. They do not see lengthy, repetitive  features about the life of individual autistic persons with Intellectual Disability or autistic adults living in institutional care. The public sees a very positive image of autism, the one at the very highest end of the "autism spectrum".  As a general rule that is all that they see.

It is not an image that would necessarily generate much funding to find cures for autism disorders.  Especially when the media savvy persons at the high functioning end of the "autism spectrum",  tell the world that WE, referring to people "on the autism spectrum", including those with Autistic Disorder and  cognitive impairment, including those autistic adults living in the care of others,  do not want to be cured.

Without the "autism spectrum" concept, widely used today, a person with mild Aspergers would not be able, with a straight face,  to claim to speak on behalf of the severely disabled autistic persons whose harsher impairments, he or she,  does not share, and whose lives bear little resemblance to their own. The "autism spectrum" concept may have some useful diagnostic purposes, but it has also caused harm. It has helped keep the realities of the severely autistic, the 75-80% of persons with Autistic Disorder who are also intellectually disabled, the autistic children who hurt themselves, the adults living in institutional care, out of sight and mind.

There is a natural media, and human, tendency to want to see things in a positive light.  The media loves the high functioning end of the "autism spectrum" and ignores the harsher realities at the low functioning end of that same spectrum.  The autism spectrum concept itself allows them to do so with a clear journalistic conscience.

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1 comment:

Adrianna said...

I, too, feel that the autism spectrum concept has both helped and harmed autistics. I was actually thinking about it all night last night, and it really bothered me.

Personally, I don't think the concept of the spectrum, per se, is what's causing harm. It's helpful in the sense that it encompasses people with behaviors that are clearly related to, but not identical, to those in the diagnostic crieria when they don't fit the criteria for any other diagnosis. It's also helpful for people whose symptoms change or lessen over time, especially with treatment.

The problem is with professionals diagnosing conditions when they either do not understand the diagnostic criteria or who do not adhere to it. If that's the case, then it really doesn't matter what the criteria are.

I think we should keep the concept of the autism spectrum but have subcategories within. For example, you have Asperger's Syndrome and nonverbal learning disorder on one end, various forms of HFA,various forms of LFA, and disorders that are related, like Rett's and Fragile X, etc. on the other end.

We already do that to some extent, but we don't have separate classifications for ALL the variants. We need to not only develop these classifications, but we need to REFER to these people as having these classifications, not by something vague like "being on the spectrum."

It's like lupus. You have varying degrees of lupus, from mild to severe. I might have lupus that only affects my muscles, skin, and joints, or I might have lupus that compromises my internal organs as well. You also have different types of lupus, such as systemic, discoid, etc. They are all immune disorders. They are alll AUTOimmune disorders. They are all forms of lupus. But they are very different from each other and have their own classifications.

If I had discoid lupus, which only affects the skin, and referred to myself publicly as having lupus, it's technically accurate. However, it doesn't have real-world usefulness. The lupus diagnosis includes people who have musculoskeletal lupus, lupus that compromises vital organs, etc. To say I have lupus without discussing details is realistically the same as saying that I am just like people with more severe forms of lupus and can speak for them.

Worse, a person with discoid lupus is, for the most part, a normal person with a bad rash. A person who doesn't know much about lupus might meet someone with a seriously disabling form of lupus and say, "What's the big deal? So-and-so has lupus and just has a bad rash! If you wanted to, you could do [insert intervention or activity here.] Stop complaining about your suffering. Why should I pay for your disability or special medical treatments?"

I may technically be autistic, but I don't pretend that I have anything *meaningful* in common with your son Conor. And people like Autistic Bitch from Hell would do well to stop pretending that she has anything in common with me.