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IV
AS in the Family

 

A challenge to US National Autism Organizations

Prominent national autism organizations have pussyfooted around this topic way too long. Their focus on the large majority of lower functioning autistic children and adult children has kept their eyes glued comfortably on the ground. Majority statistics surrounding classic Kanner's Autism have kept these organizations focused away from at least one reason why many of their local and state chapters continue to remain generally unwelcoming to parents and individuals with Asperger Syndrome. The reason may be as simple as this article's modification of comic character Pogo's utterance:

"We have met the enemy, and it is us."

There is uncomfortable but undeniable truth in the assertion that children who in infancy and early childhood appear to start out as profoundly impaired as their classic Kanners majority cousins somehow manage, by the time they attain school age, to move from classic autism to Asperger Syndrome. No one has come up with an explanation "why" and for the purpose of discussion in this section, it doesn't matter.

Why many parents of classically autistic children have such a problem in turning the ASD spectrum searchlight on themselves is not for us to guess, but after ten years of formal knowledge of AS, it is safe to suggest that (1) in many cases, there is a connection; and (2) massive denial of all kinds and at all political levels continues, despite what we know, not because of what we know about autistic spectrum disorders.

This phenomenon may be the biggest elephant in the room, yet few in the "autism establishment" dare touch it.

We do.

Doing so may explain some of the squeamishness and discomfort of parents and family members of profoundly affected autistic children. Intense national organizational focus has remained on finding cures and developing effective early childhood intervention methodologies. At a national level, policy and member chapter discussion centering on the reality of autistic spectrum parents raising autistic children has met with thundering silence.

Despite an increase in presentations on Asperger Syndrome and par