Sunday, June 01, 2014

Reactions to my son's diagnosis

Three weeks ago, we learned that our son has mild Asperger's, or autism spectrum disorder.  We've been doing a lot of reading, talking to each other, explaining here and there to friends, and planning to meet with some folks at his school (which happens tomorrow).  Most people have found out from Facebook or Twitter and read my blog post about the diagnosis.

But as I've communicated with other friends directly over the past few weeks, it occurred to me that I have had to respond to a particular reaction a few times and it solidified for me what I think and believe about my son and about autism/Asperger's.

These were perfectly well-meaning folks, and their reactions didn't upset me, really, but they did give me pause to think, and I felt I needed to respond immediately with what I believed to be most helpful.

These friends apologized.  They expressed that they were sorry to hear about our son's diagnosis.

I immediately responded that they didn't need to feel sorry.  We are glad to have this information, and also relieved to know what causes our son's difficulties in school and with some other social situations.  Now that we have understanding, we can help him feel and be more successful.

During this same few weeks, I've been reading a lot and I have come to discover that the best known Autism organization, Autism Speaks, is at the center of considerable controversy for a number of reasons I won't go into here.  One area of concern is that the organization seems to consider autism a disease that needs a cure.

My son doesn't have a disease.  He doesn't need a cure.  What needs to be eradicated is the ignorance around autism.  It's a different way the brain is wired in some people, and for a subset of that population, the effects are much more impactful than for others with the condition.

I wouldn't want my son to be changed.  We, as a family, will learn together how navigate the world with autism as a part of it.  People who meet my son, whether they know his diagnosis or not, fall in love with him.  Who would change that?

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