Is Autism Support being Roadblocked by parents?

Is Autism Support being Roadblocked by parents?

10 years ago when Marty and I first started our journey as parents of a non-verbal, extremely anxious child, we had some very specific misconceptions. For example, we had to learn the concept of normal vs neurotypical … and start to understand our responsibility to help our child grow to be the best person he can be, rather than trying to make him “like normal kids”.

The Autism Community is (mostly) Self Educating

As a community, when we see facebook postings, emails or message board comments with things like “cure my child”, “cause of autism”, “making my child act/be normal”, etc, we typically react in one of two ways. Sometimes (let’s be honest), we react to words like “normal” a fair bit too harshly, which often leaves people who may have just recently received a diagnosis feeling attacked and unwelcome. We need to be more careful about that.

The most helpful way to respond is to gently nudge that parent into the fold by helping them understand the community and culture — educating them. This way, we can help parents to stop thinking of their child as “broken”. All children have challenges of one type or another. As parents, we guide our children in the right direction using whatever methods we personally feel is most appropriate. Some prefer therapy and training, some use medication, some prefer natural approaches — the list is endless.

Sudden Up-Swing in “High Functioning”

Marty and I have been reading New Member applications for our Houston-based support group for about 4 years. In the last year or so, I’ve seen a growing number of parents describe their child as “High Functioning”. The parent of a recently-diagnosed child often includes long descriptions of what makes their child “high functioning”. In fact, it often feels less like an “introduction to the support group” and more like an explanation of why the Dr. got the diagnosis wrong.

Today a parent left the support group and sent me this message:

“My daughter is high functioning and I’m concerned that she may see others worse off and sort of lump herself in with them…she already has low self-esteem b/c of not being “normal” ….plus she is resistant to being labelled “autistic” or as having Aspergers.”

The term “High Functioning” has been around a long time. Its the recent use — and frequency of use — that its concerning. The thing I find most disturbing is that its used as an excuse to exit from the community entirely. Somewhat like the Cochlear Implant is leading some families to avoid providing support for their child (not joining the Deaf Community, learning sign language, or even “admit” their child is deaf, etc).

You Tell Me!

Am I off-base with my assessment of the recent use of the term “High Functioning”? Is it being over-used? Should it be an area that we should focus education and encouragement? Is “High Functioning” a crutch (or an excuse) for believing “My kid doesn’t belong with kids like yours.”? Feel free to reply with your comments below.