The Implosion at Autism Speaks
We all know the recent debacle between Katie Wright and her parents. Not only do I present on negative portrayals of autism for the purposes of raising money, but now we have to ask another question about responsibility.
Today, in the New York Times, "Debates in Autism Strain A Family and Its Charity" make the debate public. As it should be. Every charity must be scrutinized for responsibility from its public. The way money is spent, what the real directives are and so forth. In the case of Autism Speaks, it has been apparent from the time of its inception and their involvement with Diedre Imus, that the family believes in environmental and mercury causation and will continue its relentless search for these causes.
It's not that I'm against science. It's there to prove or disprove theories. But I'm having a problem with how we focus on an issue and where the money is being spent. I have a problem only searching for genetic causes because it seems like a scientist's masturbation. I mean, knowing the genetics of autism will do nothing to really change my son's life. It will prevent autistic babies from being born, and we know that 80-90% of Downs Syndrome fetus' in Canada are currently aborted. We know we have a high abortion rate for children with a cleft lip! Choosing life and death is becoming a little too easy, perhaps. But will genetic research help determine what medications are safe and life enhancing for an autistic individual who has anxiety issues, or other health issues? How can we ensure that autistic people live a full life with autism?
Looking for environmental causes may be a prudent way to cross it off the list of speculative assumptions, but it is creepily becoming more consumerist than responsible. Believe me, I've got nothing against protecting our environment. I've lived in Europe and recycling and public transportation existed for years before it did in North America. Yet, there is something eerie and kitsch when "saving" the environment sells products and becomes the CAUSE of everything.
We know that environment doesn't CAUSE Downs Syndrome or deafness. Perhaps if we investigate this for autism, we ought to start looking for every other disability out there too and I wonder how many in those communities might start laughing. Yet, Autism Speaks, after its gala with Toni Braxton and Bill Cosby, announced that the money raised would be funneled to the search for environmental causes. Apparently, the audience was aghast. They did not approve of where their money would be spent. The Wrignts get to dictate the agenda of a public 60 million dollar charity. But that's not all, NAAR and Cure Autism Now are fighting too.
I think a little bit of temperance on the vaccine and environmental front needs to be applied here -- because if we don't we get to hear things like this. And this deserves scrutiny:
"The boy did not respond to behavioural therapies [who really does?] the Wrights said, leading to their daughter's desperate search for anything that might help. 'When you have the sense of hopelessness, and don't see results, you do things that other people think is too risky.' Mr Wright said. 'The doctors say, 'Wait for the science.' But you don't have time to wait for the science.'" Todays quote in the New York Times. Brackets mine.
If I were to read into that quote knowing what I know now about autism, is that hopelessness is an epidemic in the autism community, leading parents to do some dangerous and desperate things like Chelation therapy and behavioural therapies -- all for the purposes of making the child not autistic anymore. (Behaviourists might disagree, but you just can't make ABA more palatable considering where it comes from). To the public, curing autism sounds reasonable, for to be autistic or disabled is regarded as one of the worst plights of human existence.
Instead of valuing and seeing the child who is right in front of us, we fight autism and waste our days. We waste all the important living and learning days of our children. The one thing I know for sure, is when we stopped fighting and started living, Adam began to change because he became happier. He is autistic and he can learn. Yes, I have to do a little more and yes, are lives are not exactly the same as families who do not live with a disability, but it's okay. We have a good life because of our attitude. We LIVE despite these debates.
Now back to responsibility. What of the autistic population who never gets interviewed in articles about autism in the New York Times? Why are they never interviewed about the very organizations that seek to represent them, but don't? When I read articles like the one today, there is something/someone so painfully missing and it is those real voices of autism -- these people who have to live with organizations like Autism Speaks that tell the public that autistic people are "not really there," or incapable of expressing their views or that if they are able, they are not really autistic. The media ignores the fact that our autism community is another community belonging to a larger disability community -- the largest minority in the US today. Most people living with disability are described as incapable or "having the intelligence of a ___ year old." Is that right?
Yesterday, a relative said "did you hear about the study their doing about protein mutations?" I held my breath. I should have said,
"How would you feel if someone referred to you or your proteins as a mutation?"
And I don't see any journalist talking about this. About social responsibility. About helping to eliminate discrimination and bias. About living happily with autism despite the ignorance.
Here's Action for Autism's take on the issue. as well as a more lucid discussion about science and perception by Dr. Gernsbacher. I do believe in doing science. But I believe we have to do it responsibly, meaning that we acknowledge the personhood, humanity of autistic people and as Dr. Gernsbacher so eloquently said, replace the language used in scientific papers with humanisitc language to represent autism. If we were to put ourselves in the place of "mutated" language, we would be offended. What is the science that is life enhancing for autistic people? What will we learn that will help autistic contribute to society as autistic people?
[Postscript: When I say that Adam changed it does not mean that he didn't "come out" of his autism. He was always a happy child. It means that he became happier and less anxious when we didn't subject him to therapies that sought to change him fundamentally and when we focussed on letting him learn as opposed to correcting him. As the years pass, my decisions in this regard are confirmed. Adam has learned to also teach himself and I watch him spell words now and use phonics to decode. He plays games with me that he makes up. He does so many things. He does not always say hello to people and needs time to be alone in crowds. But I have learned never to underestimate him or to worry about the way he does "behave." My biggest priority is teaching him how to communicate in ways that he can. So for us, this means using the computer.]
Today, in the New York Times, "Debates in Autism Strain A Family and Its Charity" make the debate public. As it should be. Every charity must be scrutinized for responsibility from its public. The way money is spent, what the real directives are and so forth. In the case of Autism Speaks, it has been apparent from the time of its inception and their involvement with Diedre Imus, that the family believes in environmental and mercury causation and will continue its relentless search for these causes.
It's not that I'm against science. It's there to prove or disprove theories. But I'm having a problem with how we focus on an issue and where the money is being spent. I have a problem only searching for genetic causes because it seems like a scientist's masturbation. I mean, knowing the genetics of autism will do nothing to really change my son's life. It will prevent autistic babies from being born, and we know that 80-90% of Downs Syndrome fetus' in Canada are currently aborted. We know we have a high abortion rate for children with a cleft lip! Choosing life and death is becoming a little too easy, perhaps. But will genetic research help determine what medications are safe and life enhancing for an autistic individual who has anxiety issues, or other health issues? How can we ensure that autistic people live a full life with autism?
Looking for environmental causes may be a prudent way to cross it off the list of speculative assumptions, but it is creepily becoming more consumerist than responsible. Believe me, I've got nothing against protecting our environment. I've lived in Europe and recycling and public transportation existed for years before it did in North America. Yet, there is something eerie and kitsch when "saving" the environment sells products and becomes the CAUSE of everything.
We know that environment doesn't CAUSE Downs Syndrome or deafness. Perhaps if we investigate this for autism, we ought to start looking for every other disability out there too and I wonder how many in those communities might start laughing. Yet, Autism Speaks, after its gala with Toni Braxton and Bill Cosby, announced that the money raised would be funneled to the search for environmental causes. Apparently, the audience was aghast. They did not approve of where their money would be spent. The Wrignts get to dictate the agenda of a public 60 million dollar charity. But that's not all, NAAR and Cure Autism Now are fighting too.
I think a little bit of temperance on the vaccine and environmental front needs to be applied here -- because if we don't we get to hear things like this. And this deserves scrutiny:
"The boy did not respond to behavioural therapies [who really does?] the Wrights said, leading to their daughter's desperate search for anything that might help. 'When you have the sense of hopelessness, and don't see results, you do things that other people think is too risky.' Mr Wright said. 'The doctors say, 'Wait for the science.' But you don't have time to wait for the science.'" Todays quote in the New York Times. Brackets mine.
If I were to read into that quote knowing what I know now about autism, is that hopelessness is an epidemic in the autism community, leading parents to do some dangerous and desperate things like Chelation therapy and behavioural therapies -- all for the purposes of making the child not autistic anymore. (Behaviourists might disagree, but you just can't make ABA more palatable considering where it comes from). To the public, curing autism sounds reasonable, for to be autistic or disabled is regarded as one of the worst plights of human existence.
Instead of valuing and seeing the child who is right in front of us, we fight autism and waste our days. We waste all the important living and learning days of our children. The one thing I know for sure, is when we stopped fighting and started living, Adam began to change because he became happier. He is autistic and he can learn. Yes, I have to do a little more and yes, are lives are not exactly the same as families who do not live with a disability, but it's okay. We have a good life because of our attitude. We LIVE despite these debates.
Now back to responsibility. What of the autistic population who never gets interviewed in articles about autism in the New York Times? Why are they never interviewed about the very organizations that seek to represent them, but don't? When I read articles like the one today, there is something/someone so painfully missing and it is those real voices of autism -- these people who have to live with organizations like Autism Speaks that tell the public that autistic people are "not really there," or incapable of expressing their views or that if they are able, they are not really autistic. The media ignores the fact that our autism community is another community belonging to a larger disability community -- the largest minority in the US today. Most people living with disability are described as incapable or "having the intelligence of a ___ year old." Is that right?
Yesterday, a relative said "did you hear about the study their doing about protein mutations?" I held my breath. I should have said,
"How would you feel if someone referred to you or your proteins as a mutation?"
And I don't see any journalist talking about this. About social responsibility. About helping to eliminate discrimination and bias. About living happily with autism despite the ignorance.
Here's Action for Autism's take on the issue. as well as a more lucid discussion about science and perception by Dr. Gernsbacher. I do believe in doing science. But I believe we have to do it responsibly, meaning that we acknowledge the personhood, humanity of autistic people and as Dr. Gernsbacher so eloquently said, replace the language used in scientific papers with humanisitc language to represent autism. If we were to put ourselves in the place of "mutated" language, we would be offended. What is the science that is life enhancing for autistic people? What will we learn that will help autistic contribute to society as autistic people?
[Postscript: When I say that Adam changed it does not mean that he didn't "come out" of his autism. He was always a happy child. It means that he became happier and less anxious when we didn't subject him to therapies that sought to change him fundamentally and when we focussed on letting him learn as opposed to correcting him. As the years pass, my decisions in this regard are confirmed. Adam has learned to also teach himself and I watch him spell words now and use phonics to decode. He plays games with me that he makes up. He does so many things. He does not always say hello to people and needs time to be alone in crowds. But I have learned never to underestimate him or to worry about the way he does "behave." My biggest priority is teaching him how to communicate in ways that he can. So for us, this means using the computer.]
10 Comments:
My ped says there's been enough double-blind tests on Mercury and vaccines in this country to prove it's not an issue. His comment is "what are they going to do when they realize once those vaccines are no longer available that the incidence of ASD does not decrease??"
I asked him if in all the yrs he's been a ped (he's around 60yrs old) if it's become an epidemic... his comment is "No, now all those children we just labelled as "mentally retarded" have a new label. And added others in it that really shouldn't be there." Like my eldest, all he needs is recognition on how he learns, a properly written IEP.. and he's fully independant.. as "normal" as "normal" (whatever that is) is in this world. But without the label, he doesn't get an IEP.
He has done chelation before on children with lead poisoning. He says it's dangerous and he wouldn't do it unless a child showed signs of Pink's disease http://www.pinkdisease.org/
I never had genetic testing done on either pregnancy... I wasn't aborting at about 20 weeks. So there was no point.
But then again as I keep telling people "we don't live for ASD, we live with it". Life has become much more simpler, happier, the kids are learning and growing faster, than those first years we attempted to live "for it".
I think Temple Grandin is my hero. She's definately not looking for a cure!!!!
S.
'When you have the sense of hopelessness, and don't see results, you do things that other people think is too risky.'
so sad and true
I took a stab at these issues here: http://aoskoli.blogspot.com/2007/06/uneducated-guess.html
I would not refer to genetic research as "masturbation," any more than I would use that term to describe research into particle physics or gravity, which don't have short term pay offs. We wouldn't tell artists that their art was "masturbation" because the particular media or forms they were working with were not useful to us in light of our particular art needs, and we shouldn't accord scientists less respect, just because their interests are different.
I think it is useful to look at where the research funding comes from. If it is privately funded, the people doing the funding decide what is researched. If it comes out of general research grants and university funds, the scientists make that call. Only in the case of earmarked state funding does the public have a real right to direct research. In this last case, I think it should mostly directed at improving support and accommodation.
Actually, I do think that a lot of artists engage in masturbation -- intellectual or otherwise ;)
Seriously, though, I do not want to be disrespectful, but my point is to ask the intent of science. Is it bias? Does it intend to prevent autism? And what might be the issues we need to discuss around that?
Let me further suggest that the geneticists I have met thus far have not engaged in the ethical debate of how far we go to prevent autism. What will be the consequences of such genetic knowledge?
How much do we have to educate a public that knows little about what it's like to live with a disability and thus listen to individuals who feel at odds with the goals of "getting rid of" certain disabilities?
Does progress just march on for the sheer curiousity? Or do we engage in science to understand while at the same time engage in discussions to educate and act responsibly? I am just imploring readers to do that.
If you have a specific study in mind, we could contact the researchers in question and ask them why they are doing what they are doing. They would probably be really happy be really happy to have someone express that much interest in their work.
VAB:
You said on your blog: "That said, the real utility of having a term like "autism" has nothing to do with causation. The utility of the term is that it helps us get an idea of what we should do. We know that autistic people are often more happy and successful with certain types of support. We also know that support has been grossly inadequate (if not actively harmful) in the past. That should lead us to conclude that current support is unlikely to be optimal. So that is something that we could be working on. And that is the kind of research that would benefit just about everyone with autism.
So, in short, I think that people should go ahead and research whatever seems likely in terms of causes. There may even be some cases of autism that have causes that make them amenable to medical intervention. Other cases don't have a "cause" any more than blond hair has a "cause." It would be good to demonstrate that too. It's all good. In the meanwhile, no matter what the etiology, most autistic people can benefit from some support or accommodation. So, as and entirely separate issue from causation, and without splitting into camps depending on which cause seems most likely for the autism closest to our own lives, let be sure that the lion's share of the energy is spent on support and accommodation."
I don't think everything is as innocuous as we like to make it out to be. I am now questioning all of this. Is studying causation the same as studying gravity? I am not sure it is. It does not use bias to conduct its research. Today in autism, we study cause because we believe there is something horribly abnormal going on -- a "mutation," as so spoken by that relative yesterday. I think that is the drive beneath it. The premise that we have to study a cause of something because we seek a world that wants to eradicate disease. But not every autistic person will appreciate being called "ill" or "diseased."
Does studying who is likely to have autism run in families (i.e.; sibling studies) do anything to enhance supports and provide access? No. This is an issue of ATTITUDE. A geneticist cannot comment on educating autism. Believe me...I've tried.
So, having read your blog and opinion, I am not yet compelled to agree. It is not as harmless in being curious about what genes makes a person blonde because we overall have a different premise underlying autism research today.
At the end of the day, if we do not educate others and assist and listen to our disabled community, we will end up not bearing any autistic babies at all. We know the facts from the Downs community.
I do not want to live in a world that doesn't have autistic people in it? Or blind people. Or deaf people. Shocking to people? Well then so be it. The choices are personal and I do not want to legislate choice in as much as I do not want to legislate ABA as an "educational tool for autism."
But I do know that I am learning to respect so many people that I never paid attention to before Adam. Our opinions, our world view is just so small here. I am just glad to be learning something about what it means to be human.
I can see your point. You are making some assumptions about motivation that may be correct. On the other hand, they may not be. There is an easy way to check.
I can't remember any past initiatives to ban or limit research into specific phenomenon that have been successful or helpful. Given that, I think it might be most helpful to the autistic community to look at how the research (which is going to continue at least in the immediate future) can be made to serve the autistic community.
We already pretty much know that there is no single gene or discrete group of genes that is responsible for autism, so the idea of a prenatal screening test is highly unlikely. (If I've missed a development that would indicate the opposite, maybe you could give me a link.) What is much more likely is that we see that most autism is the result of natural variation. I can't see how that would be anything but a good thing in terms of respect and inclusion.
Okay..I'm not making this up... I swear!:
As I'm reading your response, I just got a call from Dr. Wendy Roberts office to participate in a study for "prenatal risk factors" in autism.
Need I say more?
I often wonder why questioning the research gods is so sacrilege (I'm not saying you're not, I'm just having to say this). Every study we believe to be true. I wonder how many people are taking Vitamin D right now...?
Just because it's science doesn't make it right. It makes it factual..but then again, not always these days... Not all science is actually based on fact as we've seen with those supporting the mercury causation arguments.
With much love and respect from an artsy,
Estee
I really love your posts. You really beat that nail on the head. And the comments you receive here.. I hope that you're heard by many people. Not just heard, but listened to.
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