Autism Hub and Neurodiversity
Many thanks to Steve and Bev for an excellent performance on behalf of the Autism Hub when they appeared on These Days, a talk show with an audience of tens of thousands in the San Diego area. You can download the interview here. They were being interviewed because both are speaking at the University of San Diego’s Summer Autism Institute entitled Autism; Work With Me, Not On Me.
They are not alone: Fellow Autism Hub bloggers, Estee Klar-Wolfond, Do’C and Autism Diva who now blogs more often over on LeftBrain/RightBrain are all joining them to give a joint presentation
“Blogging and Autism: The role of the internet in today’s autism community.”
And Estee has her own slot as well:
The Mismeasure of Autism: The basis of current autism “advocacy”
I wish I could have been there. But i am looking forward to reading all about it on their blogs when they return.
Steve asked us to showcase our favourite blogs in case newcomers turn up to see what all the fuss is about. I am reposting an article wrote on Neurodiversity because it sums up a lot of my feelings about autism.
What is Neurodiversity?
What is Neurodiversity? By Mike Stanton
When I attended the International Autism Conference in London last year I heard Professor David Amaral tell the story of a young man with Asperger Syndrome who was visiting the MIND Institute at UC Davis. He was asked what he would do if they could develop a pill for autism. He thought for a while before replying that he would take half the pill.
I think this illustrates a real difference within the autism community. There are many who pathologize autism as a disorder that afflicts an otherwise healthy individual. If you hold this idea you naturally look to understand the causes of autism in order to find that “autism pill.”
The idea of Neurodiversity was developed by autistic people in opposition to the pathologizing model. According to them autistic people are not disordered. They have a different sort of order. Their brains are differently wired. They think differently. They do not want to be cured. They want to be understood.
This is not to deny that autistic people often face real difficulties. That is why the young man at the MIND Institute told David Amaral that he would take half the pill, but not the whole pill.
What does Neurodiversity mean for parents?
The cure mentality places great pressure on parents to rush into interventions. Then there is the guilt. Was there something I did or didn’t do that caused the autism in my child? Can I put it right.? How can I not put it right? Instead of raising your child you can spend all your time trying to fix him. One mother’s story illustrates this.
Olivia was four when Liz finally faced up to the diagnosis, wracked with guilt that, having given birth to her at the age of 42, she was somehow responsible for her child’s problems, either directly or as a result of a pre-natal diagnostic test (amniocentesis) that went wrong.
Her way of dealing with this lonely burden was to take action. “I wanted to rip the autism out of Olivia with my bare hands,” she says. In the years that followed, she whirled her daughter from one therapist to another, trying everything from cranial osteopathy and “brushing” her nerve endings, to Portage - a method of teaching everything in tiny steps.
[…]
“Every practitioner is convinced that his or her treatment is the one and you feel compelled to try everything to find the one that will open up your child. I have seen children who have made remarkable improvements, but I would never say they have been cured or recovered.”
[…]
Having reached a state of mind where, even if she could, she would not change Olivia, she tries to concentrate on the good qualities that come with autism - honesty, uncompetitiveness, absence of spite.
Embracing Neurodiversity allows you to stop looking for a cure because there isn’t one. I agree with the Autism Society of America that,
Most of the enlightened world knows that autism is at its root, genetic, and therefore by definition it is not something that can be considered “curable” or a “disease.”
Giving up on a cure is not the same as giving up on your child. In fact it can help you to take a more balanced approach. It is easier to reflect on your child’s strengths as well as their difficulties and take up Lorna Wing’s advice that,
an autistic child can only be helped if a serious attempt is made to see the world from his point of view.
Sometimes our biggest problem lies with other people. One mother gave me permission to quote something she wrote in an email about autism and acceptance.
I think that it’s a bit insulting sometimes for people, especially family and friends, to try to give me information about how to make my son be a ‘bit less autistic’. It makes me think they want a short-cut to make him more acceptable. I’d prefer it if they tried to connect with him and enjoy him as he is. Then they’d really be able to help him to progress.
This is the essence of Neurodiversity. First accept the difference. Then find ways to work together. And it is not all about problems either. We all had a favourite subject at school that we were good at and something else we really struggled with. Imagine being told that you had to drop your best subject and have double lessons in your worst subject.
That is not so far from the experience of lots of autistic children whose interests and talents are sidelined while we concentrate on their difficulties. This can send all the wrong messages to our kids. They learn about their limitations but rarely get the chance to achieve. So they put up barriers to protect what is left of their self esteem. You try and offer constructive criticism. They take it as a mortal insult.
If we accept somebody and work with their strengths we can help them to find ways of dealing with their problems that work for them. I spent a lot of time trying to solve my son’s problems and making choices for him. The turning point came when Dave, a clinical psychologist asked him to think about what he wanted. Prior to this my son had always been encouraged to meet other people’s demands and expectations. Dave was the first person to give my son explicit permission to put his desires before our expectations.
When does Neurodiversity give way to disability?
It is a common mistake to believe that neurodiversity is only for people who are “high functioning” or are “mildly autistic” or any other synonym for “not my child.” The argument goes that neurodiversity is all right for you. You can talk. You can write. You are intelligent. My kid is non-verbal, self-injures and needs constant care.
There is a whole set of problems that comes with being high functioning. People expect you to be normal or at least to act normal. So you expend a lot of mental energy pretending to be normal which leaves you wide open to stress related problems like depression, obsessive compulsive disorder and social anxiety disorder. You may be paralyzed by panic attacks or have uncontrollable bouts of anger. This can get you in trouble with the law or trapped in the psychiatric system. Being high functioning is not a soft option.
Does the demand for tolerance and understanding mean ignoring children in distress, doing nothing about autism, denying the need for scientific research? Of course not. We support the need for decent peer reviewed research into the problems associated with autism. It is by no means clear what constitutes the core features that are fundamental to autism, and what are secondary factors. We just do not see any justification for seeing all a child’s problems as being down to its autism and imagining that there is a magic bullet to solve them all.
Who will speak for my child?
This is a real concern, especially for parents of children who are highly dependent on others. But we are all mortal and when we die who will speak for our children then? Neurodiversity is a way of thinking about human difference that has the potential to change the world for autistic people in ways that are comparable to the impact of the liberation movements for women, blacks and gays. When society speaks for my child, then I can die happy.
The National Autistic Society in the UK recently changed its constitution. We are no longer a parent led organization. Previously there had to be a majority of parents elected to our National Council. Now there has to be a majority of family members - parents, siblings and people with autism. Many parents of severely autistic children were worried that this dilution of control would weaken their voice as the only effective advocates for their children. Some were worried that high functioning autistics would take over the NAS and their children would be forgotten.
I pointed out at the AGM that in my experience autistic people who were willing and able to campaign and hold office were concerned for the rights of all autistic people. They take Neurodiversity seriously and value everyone on the autistic spectrum. The parents of children with Asperger Syndrome were far more likely to push the NAS down the path of providing mainstream support for their children at the expense of those who needed more expensive care and protection.
Neurodiversity, like freedom, is indivisible. And its benefits are being seen within the NAS as the professionals in our care homes and schools strive to create mechanisms whereby all autistic people within our structures are able to self-advocate, make choices and exercise personal autonomy.
What does Neurodiversity mean for professionals?
By listening to autistic adults I have changed my practise in relation to the autistic children with severe learning difficulties in the special school where I teach. I no longer expect eye contact. Instead of demanding, “Look at me when I am talking to you!” I ask, “Are you listening?” When I speak to a child I give them extra time to process my words and formulate a response. If someone is acting strangely, instead of stepping in to prevent the behaviour I ask myself, “Why is he doing that?”
OK I am only human. sometimes I have bad days. I make mistakes. I mess up. So do the kids in my class. They make allowances for me. I make allowances for them. Some people do not get it. They think I am “letting them get away with it.” Yes, like they are being autistic on purpose.
The most important thing a professional can do is to help a person understand and accept that they are autistic and then decide what they are going to do about it. A lot of autistic people spend a lot of time trying to change themselves to fit in with the world as it is. It is important for autistic people to learn how to get by in this world. But they will not do that if we try to manage the way they think. I often say that we should not teach autistic people to manage their behaviour. we should teach them to manage ours. And between us we may make the world a bit more manageable for all of us.
What does Neurodiversity mean for autistic people?
I am a parent and a professional. I am not autistic and therefore would not presume to speak for autistic people. There are many who can speak for themselves. You can find a really good sample at the Autism Hub, a place where autistic people, parents and professionals meet with no distinction and anyone is welcome providing you share our respect for the condition of being autistic. We seek no fundamental alteration to this state of being but we do seek to intervene sometimes should the situation require it. And when we do intervene we should remember the words of a very wise person with autism, my son.
My autism is not a problem. It creates problems. But it is not going to go away. I want help with my problems not with who I am. I want you to offer support but do not try and change me into someone else.
Links
One mother’s story
Autism Society of America
http://www.autism-society.org/site/News2?page=NewsArticle&id=8273&news_iv_ctrl=0
Autism Hub
Comment by jonathan | June 25th, 2008
Hi Mike, as you know I have a blog in which I question many of the premises of neurodiversity. Therefore, I have some questions I would like to ask you. Is this your definition of neurodiversity alone, or is this the consensus among people who believe in disability? You seem to be saying that neurodiversity believes that autism is not a disorder. Some people have been telling me I am incorrect when I say one of the premises of neurodiversity is not a disability that I am wrong. I am wondering what is the difference between a disorder and a disability?
Also, you say that the neurodiversity is in favor of scientific research. I see the largest funding body in the U.S. Autism Speaks, constantly villified and insulted by many in the neurodiversity community. If they favor scientific research, what sort of research should be done that is different from autism speaks. How will it be funded. Totally by the public sector? or is there some private organization that the neurodiversity would approve of rather than autism speaks and why? If neurodiversity people are against a cure, then what purpose does the scientific research serve? It seems to me that it takes money to fund scientific research which either comes from taxes or private donations. The reason most research is funded is because people want to find a cure. It is not funded so geneticists and neuroscientists can amuse themselves and pay their mortgages. Or does the neurodiversity have something else in mind. I was wondering if you could please elaborate?
Jonathan
Comment by Steve D | June 26th, 2008
Mike -
Thanks for doing this. Your post completely aligns with the message we delivered today. Based on feedback from the audience, I am thinking we made a really positive impact. I appreciate the nice comments.
Steve
Comment by Estee Klar-Wolfond | June 26th, 2008
Yes, thanks, Mike. I’m just checking in on the blogs at my hotel. I’m totally exhausted, but this was an incredible experience.
Estee
Comment by Joseph | June 26th, 2008
I am wondering what is the difference between a disorder and a disability?
It’s simple, Jon. Disability indicates there’s a lack of an ability that most people have. It’s a relative concept. In a society where most everyone can fly, the flightless are disabled.
Disorder, on the other hand, indicates that there’s something broken or damaged or just wrong.
Comment by abfh | June 26th, 2008
Hi Mike. I’m glad that the NAS is becoming so much more aware of neurodiversity, and this is generally a very well written post explaining your views on the subject.
I’m a bit bothered by this line, though:
The most important thing a professional can do is to help a person understand and accept that they are autistic and then decide what they are going to do about it.
Okay, I understand that there are some people who are in denial about their autism and that you are describing a useful professional service as far as this subgroup is concerned. But it seems to me there’s some subtle cultural indoctrination and value judgments going on here, although you probably didn’t intend it that way.
I guess the best way to point it out is to substitute another group for “autistic” in that sentence:
The most important thing a professional can do for a homosexual is to help him understand and accept that he is homosexual and then decide what he is going to do about it.
Most people probably would have thought that made perfect sense 40 or 50 years ago, when homosexuality was pathologized, but not today. Our society doesn’t use such language in discussing non-pathologized groups.
Along the same lines, what would you say is the most important thing a professional can do for a woman? Most likely, your answer to that would be “well, it depends on what the woman wants and needs.” I’d say that is also true as to autistics.
Comment by alyric | June 26th, 2008
Jonathon wrote:
“Also, you say that the neurodiversity is in favor of scientific research. I see the largest funding body in the U.S. Autism Speaks, constantly villified and insulted by many in the neurodiversity community.”
There’s is a nice Latin name for this kind of logical fallacy - not sure what the name is though. Actually, I’m not sure this statement makes any kind of garden variety sense, but just in case there is some there, I have to ask, whether or not this er vilification is strictly on account of the Science and if so in what way. You have a shockingly bad habit of making broad accusations without reference to exact cases. And that’s kind of funny considering that autistics are routinely supposed to be overly hung up on details. Here’s one that couldn’t give a hoot apparently.
I rather thought that the real problem and one which could and should call for vilification is that ‘Autism Speaks’ without any autistics speaking, so to speak. Support that do you Jon?
“If neurodiversity people are against a cure, … The reason most research is funded is because people want to find a cure. It is not funded so geneticists and neuroscientists can amuse themselves and pay their mortgages.”
Couple of things here.
1. I wouldn’t like to accuse you of not having read Mike’s actual post above, but it looks to me like you haven’t. If one takes Mike’s view of neurodiversity, it is surely embedded in the basic idea that the kind of neurological set-up we call ‘autism’ is probably set by and cannot be fundamentally altered after the first trimester of gestation. It cannot therefore be ‘cured’, because it would be akin to trying to cure another person of being ‘normal’. I am so indebted to Craig Ventner for diverting so much of his own money into genetic research including the mapping of his own genome. How else would we know that what is ‘normal’ is to have a multitude of mutations, extra gene copies, gene deletions. You name it - the ‘normal’ human genome is a mess. And not so long ago some neurologist also labelled the human brain a ‘mess’ and for the same reason. There is no sublime order - chaos appears to be the norm. How we function at all is a bit of a mystery. However, the consequence of recognising that this particular genotype, no matter how much you dislike it, exists and is unalterable defines how you approach the autistic person. The kinds of things one will do from a reasonable standpoint, that is, the neurodiversity standpoint, falls into two broad directions.
1. Stop chasing a mythical ‘cure’. Alex Plank has the best line of this one and I quite like it too. Paraphrased, it went something like ‘I don’t have to worry about finding a cure because it’s not there’. Just so. There are no cures for multiple gene states and precious few for single gene anomalies. Courtesy of Craig Ventner, it looks as though the race for finding the very lucrative antenatal test for ‘autism’ is something of a steeplechase, obstacles everywhere. One does feel for the hapless researcher. Every promising lead turns up in too many ‘normal’ people. Any obvious genetic aberrations affect too small a proportion of the autistic population. And because the DSM definition of autism is so broad that it can be made to include practically every genetic aberration involving cognitive disability (sometimes to get better services), that continues to be a problem. Of course, sooner or later someone is going to combine 20 or 30 suspect genes and produce a ‘test’ that comes up with an overly optimistic ‘probability’ of autism. There’s too much money in this game for it to be otherwise, which is why I have so much trouble with the idea that Jonathon seems to think that most research is not to pay mortgages. Perhaps he’s had an unusually sheltered existence, but most research is exactly for that unless you can muscle in on the ‘test for autism’ and then you can join the millionaire’s club. Could it be then that the most sensible use of research might be to do something for autistic people in the here and now. Take interventions, for example. Is what we do based on anything more than somebody’s bright idea(TM)? I don’t think so. I spent a good few hours trying to find the missing link between the autistic ‘deficit in imitation’ and the research showing that this could a) be remediated and b) that lessons in this actually did something. Still looking.
2. If one concedes that different is always treated as deficient in our society, then the aim is to educate as many people as possible into autistic ways of being on the very sensible grounds that as the concept becomes more familiar and becomes less frightening , ordinary folks may not prejudge quite so readily as they do now. This is simply civil rights 101 and it wouldn’t matter at all what ‘difference’ was at issue. Various Downs societies should charge for giving lessons in this arena. They are a very good model. This is the second reason why Autism Speaks could and should be vilified. Devastation rhetoric has very short term gains and very long term harmful effects in public education.
But simply viewing autistic as ways of being and not as ways of being wrong has an intensely practical aspect. It is the attitude that takes a look at the person ‘fitting in’ to the world from a person centred approach, which is much more likely to work than the approaches that the world is always right and if this is not working, the person is always wrong and therefore needs fixing. Take ’social skills’ for example. A fairly comprehensive review found that only one study matched the needs of the person to the type of intervention offered. Of the great majority that were totally ineffective by the way, this one had some decent results. How strange [/sarcasm].
Joseph handily tackled the disorder/disability thing, so no need to do anything there.
Comment by Mike | June 26th, 2008
Hi Jonathon,
I will try and answer some of your questions.
Is this your definition of neurodiversity alone, or is this the consensus among people who believe in disability?
It is my opinion. Others seem to share my opinion to varying degrees. But there is no neurodiversity organization with an agreed platform or definition of terms.
I am wondering what is the difference between a disorder and a disability?
Dyslexia is a disorder. But in a world where illiteracy is commonplace it is not disabling to be dyslexic. That is how I see it. A disorder is something pertaining to the individual. Disability pertains to a person’s ability to meet society’s demands and expectations.
I see the largest funding body in the U.S. Autism Speaks, constantly villified and insulted by many in the neurodiversity community. If they favor scientific research, what sort of research should be done that is different from autism speaks.
Many in the neurodiversity feel vilified and insulted by the image of autism that Autism Speaks projects in order to raise funds for research. To this day there are no autistic members of the AS board or employed in positions of authority and influence.
How will it be funded. Totally by the public sector? or is there some private organization that the neurodiversity would approve of rather than autism speaks and why?
I think a better way is to ask “How can the supporters of neurodiversity come together to influence the funding bodies, including Autism Speaks, so that more research is directed towards ways of meeting the needs of autistic people?”
If neurodiversity people are against a cure, then what purpose does the scientific research serve?
Good question. A lot of time and mony has been taken up with responding to fears that vaccines cause autism. If we understood the causes we could maybe do away with similar health scares in the future. And if we can establish that by its nature autism is neither curable nor reversible we can put an end to a lot of quackery and devote all that effort into finding ways of helping autistic people lead better lives.
Some of this will involve therapies for autistics. Some of it will involve changes to society. Can you believe that we had to argue for wheelchair access? Larry Arnold tells the story of how the council in his home town of Coventry thought wheelchair access was unnecessary because the need was so small. He did the research to show that the reason there were so few wheelchair users in evidence was because the lack of ramps etc made them prisoners in their own homes.
Of course, there is always the possiblity that someone will find a cure for autism. Then we will face some very interesting possibilities indeed. We have already had a foretaste of this with the debate about cochlear implants in the deaf community. NT implants for autistics? They might come in handy at the office. But would you want to wear one all the time?
Comment by Patrick | June 26th, 2008
And please remember that just because Neurodiversity is currently associated with autism spectrum disorders that it is not all just about autism, it is about respect for all neurodiverse people.
In middle school I happened to have enough contact throughout the school to become elected student body president. I am diagnosed with Asperger’s at this time, though at that time I was considered something else.
My vice president (by popular vote, not a running mate) was not only neurodiverse person but also physically diverse, had to use a wheelchair sometimes, and had to be absent for medical reasons on occasion.
Does it matter? Probably in some fashion. It does to me, whether or not it does to you. Both of us did the jobs we were elected to do, regardless of our differences from the ‘normal’ students, organizing dances and other activities.
Mike has my support that most of his writings tend to be very well balanced with support being the goal.
Support, Respect, Love. I beleive I see these in Mikes writing.
Cure is something beyond comprehension at this point, and perhaps is an impossibility. Some people need to Accept that impossibility at this time, and keep in mind that trying to make people all fit the social norms can be particularly distressful for some who have difficulty Just Existing.
Comment by Mike | June 26th, 2008
Hi abfh
and just to point out to Jonathon how hard it is for us “neurodiverse” to achieve a consensus, I have to take issue with your comment.
I’m a bit bothered by this line, though:
The most important thing a professional can do is to help a person understand and accept that they are autistic and then decide what they are going to do about it.
“They” refers to the autistic person and how they are going to go about meeting their wants and needs as an autistic person. But it could also mean “They, the autistic person and rhe professional in partnership.”
For me your analogy with homosexuals or women breaks down because I do see autism as a disorder. Victims of gender or sexual discrimination can come together for mutual support, self help and political campaigning. They can recruit heterosexuals and men to support them. The only change they need to make to themselves is to become positive about who they are. Thus strengthened they campaign on the basis that, “My sexuality is not a problem for me. If it is a problem for you then you deal with it!”
I think autism is different. It does create problems for autistic people and they do need help and guidance to deal with that as well as political support in eradicating the unnecessary burdens placed on them by society.
I am aware that a lot of the “help and guidance” that autistic people are currently subjected to is in fact based on the premise that those societal burdens are inevitable and that autistics should accept prejudice and second class status as a fact of life. For example we tackle bullying by training people in how not to be victims rather than training bullies in how to be compassionate human beings.
But I do believe that autistic people would still require some degree of support with the problems that arise from being autistic, even in an ideal world where they did not require support and assistance in dealing with the problems that arise from society’s prejudice, ignorance and misunderstanding.
I may be wrong. Meanwhile, let us make a start on removing the prejudice, ignorance and misunderstanding. Then we’ll be in a better position to decide.
Comment by abfh | June 26th, 2008
autistic people would still require some degree of support with the problems that arise from being autistic
Well, yes, but everyone requires some degree of support with particular problems. We just don’t notice most of the supports because they are so common that we see them as normal. Women, for instance, often suffer from menstrual discomfort and may need to take medication for it or carefully watch their diet on certain days of the month. That doesn’t mean being female is a disorder.
I quite agree about how hard it is to achieve a consensus, though.
Comment by Ms. Clark | June 26th, 2008
Well, I’d say there are a few researchers with an view that autism is here to stay and that it is beneficial to study it. They even take money from Autism Speaks. Autism Speaks didn’t ask them if they wanted Autism Speaks to be sucking up all the donations for autism research in the US. Before it was Autism Speaks as funder of research it was NAAR and CAN as funding bodies. Even NAAR and CAN set some money aside for doing non-cure research.
And lots of cure research is funded by the NIH and other private orgs and has nothing to do with what Autism Speaks is funding.
Neurodiversity is about creating a place where autistics can walk into a business and expect not to be refused a job because the owner heard from Jon Shestack that autistics are “empty shells” or that someone else says we are toxic train-wrecks or that we are violent (or as Lenny Schafer likes to insinuate… that all people with HFA/Asperger’s are criminals, dangerous people and liars).
Comment by jonathan | June 27th, 2008
Alyric, I am not going to address most of your comments which really have no substance, nor the really condescending manner in which you addressed me, nor your and joseph’s apparent non-definition of disorder versus disability but I would like to make one point about your observation and mike’s that there are no autistics on the board of autism speaks. What if there were persons with autism on the board or in some sort of position of power in autism speaks? What if they gave me a job or put me on their board of directors? Would this make you happy aly, would this make mike happy? I don’t think so. I suspect they would just end up being accused of being “token autistics” or maybe “house autistics” by some of the nastier members of the ND community like that guy robert montgomery who addressed me but that term or christ school who makes tasteless videos about marty murphy a pro-cure autistic and calls her this. Or you would just say those autistics “were on the take” or that they were not representative of autistic, even if they were males, had been in special schools and had had a speech delay at age 3 as I did unlike the I suspect the vast majority of persons in the ND community who just have Asperger’s and were not diagnosed until they were 22 or older and are predominantly female, though the literature shows a 4:1 ratio of males to females.
I don’t think you would be happy or satisfied with autistics having a job or being on the board of directors or making any decisions. I strongly suspect you would just use this as a further excuse to bash autism speaks as would probably many in the ND crowd.
The funny thing is you are good friends with michelle dawson whose mentor laurent Mottron whose postdoctoral fellow is luc keita receives funding from autistic speaks and Dr. Mottron has a rather cozy relationship with autism speaks and goes to their conferences, yet this does not bother you one iota, nor does it not bother you that Ms. Dawson does not resign in protest from the Mottron lab. Yet still another inconsistency of the ND crowd.
Comment by alyric | June 27th, 2008
Sorry about the condescending bit - I was trying to inject a little humour there. Serves me right! But you still have that really bad habit of flinging general statements like confetti and it’s aggravating, because this is the Hub and we like to chew over the details and since there are never links to who said or did what, we can’t.
Also, and this is in humour - checkmate!! Mottron’s lab and the funding, did I or Mike mention that we objected to the Science - no, you did. See the Diva’s excellent post - there’s a lot of people including highly respectable folks looking at the genetics - and not all of it is to do with cure, though if they find anything even halfway verifiable it very soon would be. Foe me, this cure thing is a really daft red herring. Ignore it. Think here and now. We have kids, they need a proper education, jobs, a life. This cure mentality does zero for anyone.
Comment by Michelle Dawson | June 27th, 2008
Dr Mottron’s lab has also been involved in several genetics studies. Mr Mitchell can look them up on PubMed. I support genetic research in autism, just like I support genetic research in typical people.
Oh, and for Mr Mitchell’s information, I spend a lot of time reading vast numbers of well-funded scientific studies where all the study participants are typical, and where purpose of the study (and the funding) is clearly not to cure or prevent typical people.
Let’s see, what else–the record (see PubMed) shows I also work with Boutheina Jemel, who not only has had Autism Speaks-related funding (more than one kind of funding) but who has been a guest reviewer for Autism Speaks.
And–I’m really surprised Mr Mitchell has overlooked this–Morton Ann Gernsbacher not only has been a guest reviewer for Autism Speaks (as can be found on Autism Speaks’ website), she reports on her website that she has been on the “Scientific Review Committee for the Cure Autism Now Foundation” and “the Medical Affairs Committee of the National Alliance for Autism Research.”
Wait–don’t forget Jocelyn Faubert. He works with Dr Mottron, and PubMed will tell you I’ve worked with him too. And Dr Faubert has received Autism Speaks funding, and has also been an Autism Speaks reviewer. Again, I’m shocked that Mr Mitchell’s detective work hasn’t picked up on these very public facts.
I had a (short) exchange with Mr Mitchell re credible funding of scientific research, and what responsibilities this kind of funding creates, on my blog somewhere (can’t provide a link because my message would vanish into the ether). I’m not going to take up Mike’s space by repeating it here. But in this exchange with Mr Mitchell, I mentioned how I’ve very publicly and directly criticized the CIHR, which partners with Autism Speaks (and previously partnered with NAAR), and which also has at times funded Dr Mottron’s work, and the work of other people I work with.
I’m not even going to mention the possibility that scientists may publish their work in journals where they don’t necessarily agree with all the views, actions, etc., of the journal’s editors, editorial board, and publishers; and may also be reviewers for journals where they don’t necessarily agree with all the views, actions, etc., of the journal’s editors, editorial board, and publishers. Or that scientists may attend and contribute to conferences, like IMFAR, where they don’t necessarily agree with all the views, actions, etc., of the conference sponsors or organizers.
And if all that’s not bad enough, I’ve been a much harsher (in that my criticism is genuine) critic of Dr Mottron’s work than anyone else has been, and than I’ve been of the work of any other scientist. Dr Mottron has actively solicited this criticism–the kind that genuine scientists appreciate. And I’ve also leveled some rather harsh criticism at the work of other people I’ve worked with–at their request. This has been publicly documented in, e.g., the APS Observer. Oh, and did I mention, I solicit, receive and welcome this kind of criticism also, including from scientists whose views may appear to be totally at odds with what my views are assumed to be?
I did try to point out (to Mr Doherty as well as Mr Mitchell) that science isn’t politics. Looks like it was futile.
Comment by jonathan | June 27th, 2008
No Michelle, that is not the point. You want to constantly villify this organization whose stated goal is to find a cure for autism. You have clearly stated that you are opposed to finding a cure for autism. So why are you working in Dr. Mottron’s lab when he has a relationship with autism speaks and mentors post-doctoral fellows? Why haven’t you resigned in protest? I really don’t understand that. I disagree, science and politics are interwined in this case regardless of what you say. When Bob and Suzanne Wright started autism speaks it is because they believed their grandson had a disorder that needed to be cured so that they could have a better life for him.
All of your activities have been counter-productive in that end. In TMOB essay you imply the girl who wanted a cure for her brother was intolerant. You have also said that autism speaks wants a short future for autistic people. You can’t have it both ways. Either you are a hypocritical person or you want a short future for autistic people because you work in a lab and with people that obtain funding for this organization you clearly despise so much. You imply that your readers of the TMOB comment board might not be able to stomach reading a report by autism speaks, yet you apparently have a cast iron stomach that enables you to have an affiliation with this organization whose goals you totally disagree with.
I don’t understand this at all, if you feel so strongly that doing scientific research with the intent of curing autism, which autism speaks is clearly about then why do you continue to work in the Mottron lab. Why aren’t you resigning in protest?
Comment by Michelle Dawson | June 27th, 2008
Given Mr Mitchell’s very political position, shouldn’t he be demanding to know why I work with CIHR-funded people, and have worked with NIH-funded people? E.g., see the views of Thomas Insel, who heads and therefore represents an NIH institute.
Mr Mitchell should be demanding to know how I could possibly have worked with anyone receiving public (NIH) funding from the US (and I’ve done this), seeing as the US government passed the Combating Autism Act, which specifies the goal of preventing and curing autism.
Similarly, the CIHR is a government organization, and the official position of the Canadian government is that ideally autism will be prevented. Isn’t it hypocritical of me to live in (and receive services from, e.g., health care) a country whose government has the goal of preventing autism? Never mind that I work with researchers funded by this government.
Mr Mitchell should be demanding to know why I attend IMFAR, which has all along been sponsored by Autism Speaks or its predecessors. In Mr Mitchell’s view, only researchers who totally agree with Autism Speaks should attend IMFAR. Also, IMFAR’s Autism-Speaks-influenced organizers, INSAR (you have to pay INSAR in order to attend IMFAR), exclude autistic people from their leadership. But–with some hard work (including by autistics persistently attending IMFAR, rather than staying pristinely away), this might change.
Also, while Mr Mitchell displays that renowned autism advocacy ominiscience, I suggest it is not productive for Mr Mitchell to assume, as he does, that he knows what I “want,” etc. Does the fact that I’ve criticized Dr Mottron’s work mean that, in Mr Mitchell’s view, I “despise” and “want to constantly vilify” this individual? Mr Doherty has taken a similarly remarkable position, such that according Mr Doherty’s standards, I am an “anti-Mottron activist.”
My view is that Autism Speaks should not be above all scrutiny and criticism, any more than the CIHR or NIH or INSAR (or any other organization whose public statements and actions have an effect on autistics) should be. Criticism isn’t “vilification” and the fact that I criticize the public actions and statements of groups and individuals does not mean I “despise” them.
Also in my view, anyone who is able to influence Autism Speaks (or the NIH, or the CIHR, or INSAR, etc.) towards causing less harm to autistics, and towards at least the possibility of benefiting autistics, should do this. Scientists indeed have an obligation to do this–to influence the allocation of credible funding (as I wrote on my blog), just as scientists have a responsibility to perform the unpaid work of reviewing scientific papers for peer-reviewed journals.
I hope Autism Speaks, so long as it remains a source of credible funding, will be innundated with high-quality grant applications from scientists who don’t share Autism Speaks’ goals.
As I wrote above, and elsewhere, science isn’t politics. On my blog, I linked to a fantastic post by an ethicist about how to spot the difference, and why it is important.
Comment by Joseph | June 27th, 2008
I’m glad Dr. Mottron is taking funding from Autism Speaks. That means a portion of that money - perhaps a tiny portion - is being put to good use, in my view. Because you see, one might be completely uninterested in a cure but still find autism research to be very useful. The research of Mottron, Dawson, et al. is case in point. Let’s find out how autistic children learn best. Research on successful adult outcomes would also be helpful; I’ve said this many times. Research that clears up any remaining doubts on prevalence changes would be nice to have as well.
Comment by Mike | June 27th, 2008
Jonathon,
I think if we could achieve a change in the Autism Speaks attitude so that autistics were welcomed onto their decision making bodies you would be a useful addition. But not the only addition. On the NAS Council in the UK we have at least 6 autistic members - they are the ones with an official diagnosis. All are very different people and bring their own particular gifts to the table. That is the point of diversity. We are not all the same.
Comment by jonathan | June 27th, 2008
Hi mike, I won’t address most of michelle’s comments, I will only say I don’t care about the CIHR because it is a canadian organization and I am not a canadian taxpayer.
I will address your comments about autistic members on the board of autism speaks. I wish they would put me on the board or let me run the show. Would you like that, though my views don’t agree with yours?
Or do you just think that Bob and Suzanne Wright who worked very hard to get to where they are and acquired their wealth, plus worked hard to get donations so that there is a remote possibility their grandson can have a beter life should just change their beliefs just to accommodate you and the others who want to change the direction of autism research and attitudes towards autism and want to redefine autism including its most severe forms? Why doesn’t the neurodiversity crowd just start their own charitable organization and include autisics on the board and raise donations to do the research they want. Though i am still mystified as to why neurodiversity people would want to do genetic research since it seems that at least the majority of them believe that genetic research will lead to the eradication of all autistics.
All I can say is the fact that autism speaks has a relationship with someone like Morton Gernsbacher who writes that autistics need acceptance and not cure is an outrage as well as have a relationship with any lab who would employ michelle dawson.
I regard the fight to cure autism as a metaphorical war. We don’t allow soldiers who broadcast propaganda messages for the enemy in time of war to do so, we prosecute them for treason. In a similar vein we don’t allow John Dillinger or Al Capone to have jobs as police officers or FBI agents or whatever the equivalent british law enforcement agency is.
Comment by jonathan | June 27th, 2008
oh, sorry mike, i reread your post and you said I would be a useful addition. Thanks, i did not notice that before, so i am glad you are willing to have some autistics on the board whose viewpoints do not agree with yours, but the rest of my points still stand.
Comment by alyric | June 28th, 2008
“All I can say is the fact that autism speaks has a relationship with someone like Morton Gernsbacher who writes that autistics need acceptance and not cure is an outrage as well as have a relationship with any lab who would employ michelle dawson.”
Well isn’t that a nice piece of malice? His minders should keep a better check on him - Spite and legitimacy don’t share the same space.
Comment by Mike | June 28th, 2008
Jonathon if you stand by what you say,
I regard the fight to cure autism as a metaphorical war. We don’t allow soldiers who broadcast propaganda messages for the enemy in time of war to do so, we prosecute them for treason. In a similar vein we don’t allow John Dillinger or Al Capone to have jobs as police officers or FBI agents or whatever the equivalent british law enforcement agency is.
then do you regard me as an enemy?
You say you are glad that I am willing to accept autistics who do not share my point of view. Are you willing too? Would you be able to sit on a committee with people who disagreed with you and your metaphorical war?
Comment by RAJ | June 28th, 2008
“Most of the enlightened world knows that autism is at its root, genetic, and therefore by definition it is not something that can be considered “curable” or a “disease.”
Schizophrenia at its root is also thought to be genetic and neurologically based. Unlike autism, schizophrenia has a treatment that in many cases represent a cure, returning patients to normal healthy productive lives.
Should society ban medical treatment for schizophrenia in the name of diversity?
Comment by Mike | June 28th, 2008
hi Bob
autism and schizophrenia? apples and oranges. not really comparable in my opinion.
Comment by jonathan | June 29th, 2008
Mike I thought you were a special education teacher I did not know you were an autism researcher, so you would not be my enemy, only people who try to get money from charitable organizations when they do everything they can to undermine the organizations intentions as do Michelle Dawson, Morton Gernsbacher and other anti-cure people who either are employed by labs who accept money from autism speaks, an organization plainly detected to curing and preventing autism.
As for the answer to your other question, it would depend on the circumstances, more specifically the organization involved. No, I would not be able to sit on the board with people at autism speaks who were involved in the neurodiversity movement as that would defeat the whole purpose of sitting on the board of such an organization
Comment by jonathan | June 29th, 2008
Seems to me the pot is calling the kettle black, Alyric, if anyone has bad manners, bizarre and bigoted stereotypes of autistic people that have nothing to do with reality it is you. But though the neurodiversity movement causes me some aggravation I am not worried about it causing too much harm. I remember the old Arab proverb, The dog may bark but the caravan still moves on.
Comment by Michelle Dawson | June 29th, 2008
According to Mr Mitchell, I “try to get money from charitable organizations.”
I suggest that Mr Mitchell provide some evidence for this.
Comment by jonathan | June 29th, 2008
Michelle I met Dr. Mottron at an autism speaks meeting when he was in Los Angeles. I told him to say hello to you for me, I guess it slipped his mind. you work in his lab, he accepts funding from autism speaks, they are a charitable organization. You are advocating that people who do not believe in curing autism apply for grants from an organization that clearly believes in curing and preventing autism. Even if it is not your projects with Dr. Mottron that are funded by autism speaks you are still saying it is okay for others who disagree with them to apply for these grants from charitable organizations that they disagree with. If you work in the lab you are indirectly getting this funding as it means CIHR and NIMH don’t have to totally fund Mottron’s research. At some point you may be in the unenviable position of applying for a grant at autism speaks, you seem to think it is okay for others to do this since you regard them as a credible funding organization though you seem to think they trample on autistic people’s civil rights, so I presume you think it is okay for you to apply for this. The money is there for the Mottron lab, so at least indirectly it goes to fund your salary and research projects which must be antithetical to autism speaks.
When CIHR and NIMH money becomes too tight Dr. Mottron may want to apply for grants from autism speaks that fund your projects with him as well as Dr. Gernsbacher who you have colloborated with in the past who serves on the advisory boards of an organization that I would think with her political views she would ultimately detest. At some point you may have as your only two choices of doing your research projects on Autism speaks’ dime or asking Canada Post for your job back.
That says it all to me.
Comment by Michelle Dawson | June 29th, 2008
Still waiting for Mr Mitchell to provide evidence that I “try to get money from charitable organizations,” as he claims I do.
And there’s that autism advocacy omniscience again–Mr Mitchell is showing off his powers. This time he’s even got my future nailed down.
Comment by Mike | June 29th, 2008
Jonathon,
when any researcher applies to any funding body their application goes before a committee who are fully aware of the purpose of that research before agreeing to funding. They judge each proposal on its scientific merits If you have any objections to the funding decisions that Autism Speaks has made I suggest you complain to them.
You have also made it clear that you object to people who criticize Autism Speaks and apply for funding from them. I think you have made your point and it is time the discussion moved on.
Comment by Michael | August 7th, 2008
RE: Autism Speaks. A 13 year old boy with Asperger Syndrome has some hilarious commentary about them. It can be found at the end of Midnight In Chicago’s latest free Autism Spectrum Podcast entitled “Special Feature Interview with Douglas Giesel and An Update Interview with Lewis Schofield” at http://www.mic,ypodcast.com