- I want to learn how to support my son by listening and learning from autistic adults and older children. Their opinion, to me, is more important as they are able to give voice to situations that my son may find himself in. For an organization that claims to speak for autistic people, Autism Speaks has very few autistic people within their leadership and they should have a lot more.
- Autism Speaks believes that autism needs to be cured. I don’t need my son to be cured. I need the world to accept his differences and look at the value that these differences bring.
- Most of the money that Autism Speaks receives (about 95%) is spent between research, fundraising, ‘awareness’ and lobbying. Less than 2% of the money actually goes to help autistic people and families. My son often needs a 1:1 aid to make sure that he is safe and to allow him the flexibility to step away from an activity if he is feeling overwhelmed. We have to pay extra for 1:1 swimming lessons, not out of choice but out of need. When we have taken him horse riding, we also need to pay for extra support and supervision. If we ever use a babysitter, we have less choice and pay more because I need someone to be accepting of him being autistic. Before and after school care is the same. He wasn’t allowed to attend until there was an aid for him and special educational summer camps are so expensive that he will miss out. This is the same for millions of autistic families. Autistic children are missing out and in my opinion, an organization that is meant to support them should be giving more money to support them.
4. I also don’t like that they use the puzzle piece in their logo. The meaning behind the puzzle piece is that autism is a puzzling condition that needs to be solved and that autistic people are incomplete. My son is a human being and does not have something missing. The puzzle piece is wrong.
The Pajama Gang 