Controversy.jpg

If you follow current news in the Autism community I don't have to tell you about the firestorm thats been burning the last few weeks.

Suzanne Wright co-founder of Autism Speaks published this letter, it turned out she was also lighting a fuse.

Here is a great breakdown of what happened next.  Were watching the explosion of one of the most important discussions our community needs to have.  For me it boils down to  2 issues.  Do people with Autism get a seat at the decision making table and do we continue to look at Autism as a disease in need of a cure?  

I've always had an uneasy feeling about my decision making for Alex.  I'm  100% committed to being his advocate but I always worry that I'm not giving him enough say.  Autism, communication disorder, teenage hormones and general male energy don't foster long heartfelt conversations about how well math class is going or if you like your new job.  I almost always find myself having to make choices based on limited information, a lot of observation and a good dose of following my gut.  There is always a good chance that I'm just plain wrong.  Personally, if your doing this job well your always considering that your opinions could be wrong.

I'm excited to watch the Autism community organize.  It's going to be a challenge for them.  Autism looks wildly different in almost every person living with it.  And if you've ever had the pleasure of hanging with people on the spectrum you know this is an opinionated group!  It's going to be a fascinating shift and I can't wait to watch it evolve.

I want the input that they have to offer.  I want their perspective on housing options, employment, socializing and independence.  I'm tired of making all of these decisions myself.  I'm an advocate but I'm not Autistic.  I shouldn't be sitting at the decision making table all by myself. 

Comment