I think it’s important to share the opinions of Actually Autistic people. I’m non-autistic, so even though I’m a parent of an autistic daughter, my opinion doesn’t mean quite as much as that of Actually Autistic people. Before I share my thoughts, this is a great blog entry, shared with permission, from Thoughts from an Autistic Vegan: What’s wrong with Autism Speaks from an Autistic point of view. I’d like to thank Autistic Vegan again for letting me share this.
Saturday, July 11, 2015
What’s wrong with Autism Speaks from an Autistic point of viewIt seems everyone is aware of autism these days. I can’t think of anyone I have met, who has never heard of autism. Autism Speaks has made sure that we are all aware. Their latest awareness piece came in the form of an article in People magazine, proclaiming Bob and Suzanne Wright to be heroes, battling the autism epidemic. Battling. Epidemic. The hate speech never ends with Autism Speaks. It is as if they are unaware that Autistic people don’t want you to go to war with our brains. My family became aware of our own autism, right at the same time that Autism Speaks was getting off the ground, and becoming a widely known entity. So they made sure that we knew that autism was something to be afraid of. My Autistic son was 5 years old in 2009, when Autism Speaks stated, “I am autism…. I work faster than pediatric aids, cancer, and diabetes combined. And if you’re happily married, I will make sure that your marriage fails.” http://autisticadvocacy.org/2009/09/horrific-autism-speaks-i-am-autism-ad-transcript/ Where are the help and the resources? OT services could be provided for families to get help with understanding their children’s sensory needs. Communication devices to help people communicate more effectively with their families would certainly help many of us. No, fear is all Autism Speaks has to offer. Autism Speaks raises millions of dollars with their pity campaigns, and yet, only gives 4% back to families in the communities. http://loveexplosions.net/2014/10/31/oops-they-did-it-again-autism-speaks-2013-financials-just-released/
My son was only 2 years old when Autism Speaks made a documentary called Autism Every Day. This movie is a pity party for parents of Autistic children, the worst part being when a mom talks about wanting to drive her Autistic child off a bridge, while her Autistic daughter is in the room, and says she only did not do that because of her other, non-Autistic child. http://tinyurl.com/nnhveky These are the things that do the most damage. Autistic children are murdered by their parents at an alarming rate. Yet, in the media, which Autism Speaks is always at the center of, this is excused. People lament the lack of services, think of the martyr parents, and shake their heads at the unfortunate lot in life to have an Autistic child. http://www.autistichoya.com/2013/03/honoring-dead.html In their most recent documentary, Sounding the Alarm, there is more of the same. Over and over again, the message from Autism Speaks is that autism is an epidemic to be battled. They don’t take the time to talk to Autistic people of any age to get their opinions on what services are needed, or what message should be sent to the world at large. Instead, they speak to weeping parents, and call for more services as they exploit Autistic people’s darkest moments for profit. They show a complete and utter disrespect for Autistic people in every action that they take. Because of this, it is very difficult for me to tell people that I am Autistic. I know it changes their opinion of me, because of the lies that Autism Speaks told them about people like me. No organization has done more harm to the community they claim to help. It makes me sad that they are the leading resource doctors, therapists, businesses, and everyone else, looks to when seeking information about autism. How can they be the leading resource when they do not even consult with Autistic people in any meaningful roles? https://www.autismspeaks.org/about-us/board-directors It’s time for people to stop listening to Autism Speaks, and start listening to Autistic people.
This blog entry has several things going through my mind. First, I think I’ll let this marinate a little while for you guys to read. Then I’ll post my own thoughts. But first, please let me emphasize this for other non-autistic parents of autistic children: our children’s opinions on autistic matters including themselves are more important than our own. Who knows what’s better for someone than the people that are having policies and decisions and social discussions about them? I think this reblogged entry I just shared is one that we need to pay attention to, because it’s a common theme among adult autistic self-advocates.