Friday, April 12, 2013

Autism Understanding: Day 10

He leaps onto the table
"Mama Mia!" Dare they claim
No imagination?


Whenever I hear someone begin with, "people with autism..." to describe any one person with autism, I tend to cringe. A lot of lip service is given to the uniqueness of people, include autistic people. However, the power of over-generalization still reigns in society, and all too often an individual is overlooked and even disregarded, in favor of pigeon-holing categorization and labeling. Such is the danger of labels.

When Joey was very young, and we first took him down to Kluge, one of the most striking of comments made by Dr. Blackman at the time was to the effect of, Joey displays all the classic signs of autism- but not in a classic combination. At the time, it was striking because we found ourselves having difficulty understanding what it meant, because we were newbies to the road of discovering what it meant that Joey is autistic. The better we know Joey, the more the comment makes sense. It also explains some of the problems we have getting others to understand him.

We have been told Joey is "too social" to be autistic. We have learned this is rooted in ignorance of autistic people generally, and why they may- or may not- avoid or have issues with social interaction.

We have been told Joey is "too verbal" and should have his diagnosis changed to Asperger's Syndrome. This is rooted in ignorance of autism and the specifics of Asperger's Syndrome, as well as the work Joey has put in to learning to speak and use language. It also ignores the amount of energy and processing it takes for Joey to use language. It is the first skill that plummets whenever he gets angry or upset. Besides, we started this path with a non-verbal child. We are totally sold on the merits of early intervention.

We have been told that autistic people don't lie. This is a laugh, rooted in the problems autistic people often have with processing language or using language as a tool for expression. Joey does have trouble with some kinds of visualization, certainly has issues with language and idioms, and often has trouble with his "filters" (both receptive and expressive). He is, however, quite capable of lying, and understands the concept of both the "white lie" and the blatant falsehood. He knows that if he breaks a rule, lying is one way to try to get out of consequences- and sometimes it is a highly successful tactic (especially with folks who think autistic people can't lie).

We have been told Joey is too intelligent to be autistic. This is jut plain ignorant.

We have been told Joey is not smart enough to be autistic. Setting aside the basic ignorance this reveals of Joey's intelligence or person, not every autistic person is a savant. As far as we know, Joey is not a savant. I refrain from setting out complete and total judgement until we see how he grows up. We are still learning about Joey and his talents- as is Joey.

We have been told Joey is too heavy to be autistic. He is too well-behaved. He has too much eye contact. He has too much joint attention. He has too much or too little or too soon or too late.

It is all rooted in ignorance and blindness, and the devaluing of the individual. It is born of wanting to sweep people under a label and not have to worry about thinking about them anymore. It results in reluctance to provide support and service, to welcome him into his community, or to even get to know him. It is a dismissive attitude that often plays out in rudeness on the playground, people who make faces and comments and even actively bully. Ignorance is the root of fear.

Joey is Joey. And he is awesome.

I am lucky to get to know him so well. I love being his mom.


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