Wednesday, April 2, 2014

Autism Awareness Day, When Noone asks the Opinion of Autistics

CM2 came home from school today all upset. Terribly upset in fact. I knew he would. He sent me an email. It being Autism Awareness Day, students in the cafeteria were fundraising for Autism Speaks. He was beside himself. How could they support a group that marginalizes him? Talk about feeling disrespected and unwelcome. When he was at the gym later this afternoon his trainer told me he explained to her what happened in the cafeteria and that he was crying.

I tried to explain to him that these students don't really know the controversy about Autism Speaks, That they actually thought they were doing a good thing. I asked him if he talked to them and told them why he as a person with autism doesn't like Autism Speaks. No he did not.  I think he was just too hurt. Also social confrontation is not easy for him. For him interacting with strangers is very hard to begin with.

I mentioned to him that he could send an email to the college president explaining that he is a student at the school with aspergers and why he doesn't like AS. Ask if the email can be sent to the student body so they could understand that people with autism have feelings and that AS is not representative of the autism self-advocate community. If he didn't want to write something himself, he could use  John Elder Robinson's insightful blog post as to why he resigned from AS HERE.

......"No," he said........heavy sigh....."No".....He was just so demoralized.

So I wrote to the disability director myself and asked if she could do something about a blast email. Tell students that one of their number, who has aspergers, wants to explain why Autism Speaks is seen as non-supportive of the autism community and to please include the Robinson blog post. We will see if they will do anything at all. I would hope that they might take the feelings of a person with autism into consideration when promoting autism awareness.  We shall see. (Yes this might have been a good lesson in self-advocacy, but you did not see the hurt on my son's face, the tears in his eyes and the look of defeat.) I'm hoping the college does something, just so CM2 sees that he could have an impact if he wanted to.

I have always said that the boys will decide for themselves how they want to deal with their aspergers when they became adults. CM2 is very proud of who he is. He likes his aspergers. Oh he has issues galore, but he knows what they are, we work at them. In truth he wouldn't change who he is for anything at all.

Now, as his parent, I always wanted to shield him from letting others make him feeling insignificant or unwanted because of his autism. So for me there is also a lesson to this story. You can't protect them from everything, including well meaning people.

*Guidelines for organizations that support autistic people From the Thinking Person's Guide to Autism  HERE

UPDATE: As of Friday I never heard from anyone at the school. Ironically this college is heavily invested emotionally in Autism Speaks. They always host the yearly walks and confabs in the area for AS. I guess how someone like my son feels about his autism and autism related groups isn't as important as their own perspectives.  Considering how inclusive this school is and how they have allowed every type of accommodation for the boys, you would think they would have some respect for the perspective of autistics about being autistic. Very odd. Is this ableism?