I Can't Believe She Said That!

Since I don't have any great words of wisdom to add to the conversation, I wasn't going to write about the horrendous letter from Autism Speaks last week.  But, as tends to happen, when I saw my boys this weekend, I had to talk about it.  I knew my Aspergian would find it despicable, as he should, and he did. What caught me up short, what made me catch my breath, what makes me want to confront Ms. Wright, physically, is what I could not have predicted: somewhat tentatively, my boy asked me whether we actually felt the way that this horror of a woman claimed that autism families felt, because of their autistic family members - did we feel like we were existing rather than living, and was our family suffering all because of him?

It never occurred to me that he could ever, ever think that.  We are not an unhappy family.  We laugh a lot.  We have fun.  He is not a "difficult" child (at least not now). He has always seemed so confident that he is loved and accepted at home, even if there were times when he struggled with some relationships outside the house.  If he could question his place, his value in the family, when his situation is so good, and he heard about this because I was ranting about it, what of all those others, who may have had more turbulent relationships at home?  whose introduction to these concepts are that they are valid?  What are those individuals going to think of themselves, of their self worth?

I am not one of the people for whom the "open letter" is a turning point.  I have never liked Autism Speaks, and as they grew and became more powerful and monolithic, I grew to dislike them more and more.  Now, however, dislike has become loathing.  It's become personal. They hurt my boy; they hurt his view of himself.  It's so past time for them to pack up their bags and just ... leave "town."  Being good at media and marketing does not mean they are good at anything that has anything to do with autism.  If they really are concerned about autism, it's time for the Wrights to turn the organization over to people who do know something about autism, and who respect autistic individuals, not people who are invested in demeaning them and using them as objects of fear and pity.