My friend Jennifer wants Autism Speaks to be better.
She does a lot of things to encourage this, and one of them is making the video above, about her wonderful son Charlie.
I'm not as confident as she is that Autism Speaks can get better.
But I like this video. And if Autism Speaks looked like this, it would be better for us all.
It's been quite a birthday in Autismland for me. Today, for the first time, someone from Autism Speaks actually listened to me. I had a lengthy talk with Kathy Streng, who is the Southeast Regional Director of Something That Is Not Exactly Clear to Me. And she was very nice, and very interested in listening.
And that has never happened before.
So thank you, Kathy.
And thank you, Jennifer.
Also thanks to the Autism Science Foundation, who let through my question today to Dr. Peter Gerhardt, another thing that has never happened before:
Does it concern you that autistic people are usually left out of organizations that study us and claim to help us? Any ideas about what could be done to improve that situation?Peter Gerhardt: It does bother me and it should be a focus of advocacy on behalf of the ASD community. I think OAR can do more in that direction as well as any number of other organizations. I am glad, however, that Ari is now on the IACC as that is the source of much funding.
Remember Daniel Corby
Responses from two mothers to the death of Daniel Corby.
Jennifer Sheridan wrote this on the thAutcast Faceboook page:
I think this issue may be three-fold. This is the kind of "awareness" I think we desperately need.
First, for the media, parents, caregivers and other members of the general public that left comments like, “although I don’t condone this murder she must have been at the end of her rope, it’s very hard to care for a child with Autism” we need to stop this kind thinking and fast. There is never justification for hurting or killing a person with disabilities, ever. NEVER. We need to make sure we do everything we can to change the view of some that there are acceptable or explainable reasons for killing an Autistic child or Adult, because there are NONE. We should all have expressed grief and horror that anyone would kill their child, period.
Secondly, we need to find a way to make sure that all available resources and hotlines for the prevention of child abuse and suicide are right in front of the public’s eyes, so that people can stop themselves from harming their children or themselves. I see this as the most expedient way to protect the most vulnerable among us, especially young children and those with disabilities. We need to find a way to stop people who, for whatever reason, are teetering on the ledge; we need to talk them down. We may not be able to save people who are so depressed or lost that they take their own lives, but we have to try, and we must absolutely and without question stop them from taking someone else’s. We need to convince people to get help or get out.
Thirdly, and this is just a hypothesis, it is possible that Daniel Corby’s mother and George Hodgins’ mother felt, in some twisted, sick way, that they were “protecting” their children. It has been reported that Daniel Corby’s mother attempted suicide. In George Hodgins’ case, his mother did commit suicide. It is possible that neither wanted to kill their children because they felt overcome by their children’s disability, but for other unknown reasons they were desperately without hope and were suicidal. In Daniel Corby’s mother’s case, the District Attorney has said that she told them that her son “did not have a life or a future without her”, and because she thought she would be successful in her own suicidal drowning she killed him first. This could be an offshoot of the fear many parents have, that we are terrified that when we die we do not know who will care for our children. But stable, healthy people don’t kill their children in anticipation of their own death; that’s absurd -- this is not “protecting” them. This is doing the ultimate harm, with children and adults with disabilities paying the ultimate price. We must get the message out that this is the worst thing a parent could do -- the absolute *worst* thing they could do to their child, and no one deserves to die in the name of “love and protection”. No one, it’s sick and it’s wrong.
Like I said at the beginning of this comment, this is the kind of "awareness" I believe we need. And I am very hopeful that Daniel Corby's mother is prosecuted to the full extent of the law, because for whatever reasons she had, she drowned her son. I wish to God she hadn't.
Ariane Zurcher begins her piece at The Huffington Post with a list of autistic people murdered by their parents and ends it like this:
Because of the Internet, we all have a support system if we want it. No parent or autist need feel alone. The autists are the ones who can and will change the current perception of what it means to be autistic. They are writing and speaking forcefully, beautifully, with eloquence and power. I have said this before, I will say it again: We must listen to them. They need to be included in any discussion, organization and conference regarding autism. More importantly, they need to be included, period. Some parents have said to me, "but they have blogs." They can talk. They are articulate. My response is, yes, that is exactly why we must listen. Just because some of our children cannot speak or those who do may not be as articulate doesn't take away from the fact that these autists can and do. If our children could speak as eloquently, how do we know what they would say? If they could speak, wouldn't we listen?
It's an honor to be in the list of blogs she includes.