The Kind of World I Hope For
“A world where no family has to live with autism.”
That is the kind of world that not I, but Autism Speaks hopes for, according to its new video, A World Where……..
This is quite an absolutist, and a sweeping statement, seeing as how (as noted in its Facts about Autism) “67 children are diagnosed per day” and “a new case is diagnosed almost every 20 minutes.” By Autism Speaks’ own accounting, there are going to be a lot of autistic adults (not that there are not already a lot of autistic adults). My son Charlie will be one of those autistic adults—-I hope he will live a long and healthy life.
And, if (as I more than hope) Charlie does, we will be a family living with autism. So, if Autism Speaks is going to, as its new video proclaims, make sure that ours is “[a] world where no family has to live with autism,” I am not sure what they might plan to do with a family like mine. It seems that the future envisioned by Autism Speaks is one in which families like mine are not wanted, and in which we will not exist; in which there will not only not be any autistic persons, but also no families with autism.
That is quite a vision for the future.
Myself, the world I envision is one in which, as Sue Rubin puts it, autism is a world.
With Charlie. With autistic persons. With autism.
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POSTED IN: Autism Organizations, Disability Rights, Family, Rhetoric
15 opinions for The Kind of World I Hope For
Kathy
Mar 30, 2007 at 9:58 am
“Autism speaks”
And what they have to say is;
Non Gradus Anus Rodentum!
( Sorry Kristina couldn’t resist that one!)
And it sounds so much nicer in latin!
julie
Mar 30, 2007 at 11:00 am
It seems to to me strange to say that they want a world that does not judge autism and also that they want autism to be a word for history books. As the most well know research and advocacy groups raising money for research into autism I feel it is biased of them not to keep an open mind to the fact that as I believe there may never be a “cure” for autism. There is not a cure for many developmental disabilities the advocacy and support groups focus on educating families and helping each person with the disability live the highest quality of life that they can achieve.
Autism speaks I feel has failed in many ways when I contacted them about advocacy groups in my area dealing with autism and trying to stop treatments that would be considered torure if done to anyone else. They had no information for me they directed me to sites that talked about how wonderful these programs were and that was it. When I called back to see if there was a group in my area that was making a point of trying to contact families after they recieved this diagnosis and offering them ongoing support I was told that they could mail me ther information on how to have your child diagnosed and that they were not sure. As well known as they are it seems to me that they should know what is available. I also expressed interest in starting something like this so that families could network get real information and support services before they were too overwhelmed and frusterated the woman I spoke had no interest in helping me figure out how to do this. An advocacy group should be there to advocate for the best interests of the child without bais, as well as when raising money for research that should as well be conducted without bias. I get the impression that Autism Speaks feels that there job is to prove that this was done to these children. It makes me sad that it is so difficult to get support and good information and Autism Speaks does not speak for my daughter or our family.
Usal
Mar 30, 2007 at 1:30 pm
Autism Speaks does not speak for me.
But then I’m one of the ones that can speak for myself when I have to. Something that Autism Speaks seems to not like (even more so because I disagree with their mission.)
When I look at my family history, I see no way that autism can be eliminated. And when I look at history as a whole I don’t see how it would be in humanity’s best interest to even try. And I have yet to see anything from Autism Speaks that can convince me that they have any interest in seeing autistics succeed as autistics. They seem to want us to either stop being ourselves or just go away.
Lisa/Jedi
Mar 30, 2007 at 3:58 pm
Such obnoxious grandstanding! I wonder if they’d have the guts to propose “a world without blind people…” I just wish they (whoever they are- from what julie says they’re not really sure) could understand clearly that they are advocating the worst sort of predjudice & making is seem as though it would be possible & desirable to wipe out a whole sub-group of humanity.
Another Voice
Mar 30, 2007 at 7:35 pm
It would have been great if they came out for a world that was accepting. A world without anger, hate and condescension. A place where children were safe and not constantly being measured and pushed. Where teenage suicide was unheard of.
Actually, I would even take one day per month when we would look at people who are different than ourselves as people of equal value and treat them accordingly.
Kristina Chew, PhD
Mar 30, 2007 at 9:39 pm
Kathy, Latin does dress it up nicely…….. Julie, thanks for sharing what happened when you contacted them. The questions that you asked are the kinds of down-to-earth day-to-day concerns that I for one needed help with when Charlie was younger—not all those sweeping sound bytes. I feel the same way, Usal, about autism always having been with us and staying with us when I look at my family history—Charlie is the first autistic in my family tree.
Seems very ironic but the “world without autism” that the video proclaims would be one in which none of the children who are in it would exist.
Another Voice, yes, it’s a world of acceptance, a world made safe for differences that we need—-at least one day per month and every day!
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Mar 31, 2007 at 2:00 am
[…] The Kind of World I Hope For […]
Steve
Mar 31, 2007 at 4:47 am
I can see where a sweeping statement like “A world where no family has to live with autism.” would rub people the wrong way, and clearly Autism Speaks has a pretty good history of stirring the pot with bold statements and even grandstanding.
But… it seems to me that there is a fundamental belief (a core value) difference between an org. like Autism Speaks and those who bristle at such words. This core is the answer to “why is the autism rate at 1 in 150 (1 in 94 boys) now?” If a person’s core belief is that autism is mostly genetic or “just who they are”, then these words would almost border on eugenics. However, if a person’s core belief is that the rise in autism is mostly due to environmental factors then these words are a battle cry - a “the world is poisoning our children and robbing them of their potential” plea to fix this before it’s too late.
Who’s right? Is there a common ground?
Phil Schwarz
Mar 31, 2007 at 1:13 pm
Julie, there *are* organizations that are starting to provide the kind of support you are talking about. In the Toronto area, The Autism Acceptance Project (http://www.taaproject.com) is doing just that. What they are doing needs to be replicated elsewhere.
Another organization worth looking into — perhaps could provide some literature and advice and moral support for setting up a local support group of the kind you envision in your local area — is the Autism National Committee, http://www.autcom.org
Phil Schwarz
Mar 31, 2007 at 1:16 pm
Here is something written *a long time* ago, that addresses “the kind of world I hope for”, that we should all read and think about:
http://www.autistics.org/library/want.html
Kristina Chew, PhD
Mar 31, 2007 at 5:23 pm
Thanks for that reminer, Phil…..
Steve, I do hope for “common ground”—– what you write touches on many core autism issues and especially the issue of cause. It does seem a somewhat, relatively recent occurrence that Autism Speaks has been referring more to biomedical treatments and theories of autism than in the past.
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Apr 1, 2007 at 6:19 pm
[…] Speaks which, as I have written, is not an organization whose view of autism that I agree with in many ways. But the songs, reflective and a bit sad, but also upbeat and jouyous and (ultimately, I think) […]
You Don't Know Who
Apr 7, 2007 at 3:17 am
5. Another Voice Says,
“Actually, I would even take one day per month when we would look at people who are different than ourselves as people of equal value and treat them accordingly.”
And if you were labeled, designated, identified, or seen as one of those people, would you enjoy or appreciate being stared at all day once a month?
Kristina Chew, PhD
Apr 7, 2007 at 12:00 pm
I think “Another Voice” meant “look at” in a more general sense.
You Don't Know Who
Apr 7, 2007 at 11:36 pm
In that case, why only one day per month?
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