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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 | |