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Where Parents are the Experts and Professionals are the Learners

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An inspiring blog post by a mom and advocate of the Awenesty of Autism site described a dramatic office visit and the choice she made to not put a limit on her child’s future:

In the author’s post, she writes:

“After the evaluation, the lovely doctor, in a very nice, professional manner basically told me that with as many kids as she sees, Ryan’s language is poorer than most kids who walk through her door. Ryan’s scripting, his verbal and non-verbal communication might just have peaked at the age of 12 and chances are, it’s a good as it’s gonna get.

I felt like I was going to throw up.”

As a professional, I wish I could say that this is a rare exception, that most professionals and educators presume competency in children and don’t judge neurologic differences as pathology. But frankly, I’m just not sure.  I have heard so many stories like the one above from parents.  The part of the message that causes stress is when a professional makes categorical statements that necessarily imply a set limit, a ceiling, a disablement.  Such prognostications can take away hope, and suggest that differences equal deficiencies instead of allowing each family to define the meaning of the differences with their child, over time.

When I see children like Ryan, who have adapted in the most efficient way to the way their brain is wired, I marvel, out loud, with the parent.  Isn’t it amazing how strong his memory is? Isn’t it great that he wants to interact in the best way he knows how? It’s called an adaptation. Adaptations continue to be pathologized (“stimming”, for example), is most often seen as a “behavior” and not an adaptation.  It is an example of the prevailing system in which professionals are educated (the medical model), which focuses on deficits and is far too simplistic to capture the complexity of brain and behavior, but for now, it is the standard evaluation and treatment model.

The very good news in all of this is that neurodiverse individuals and their parents are speaking up to establishments that place the limits on the future of autistic individuals.  Ryan’s mother did this, and chose to not place a limit on her child. It really is time for professionals to listen, and learn from the real experts.

Here are some great places to learn:

www.idoinautismland.com

www.awenestyofautism.com

 

 

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