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
http://www.telegraph.co.uk/health/main.jhtml?xml=/health/2006/05/08/hastor08.xml&sSheet=/health/2006/05/08/ixhmain.html
Autism Society of America
http://www.autism-society.org/site/News2?page=NewsArticle&id=8273&news_iv_ctrl=0
Autism Hub
http://www.autism-hub.co.uk/
June 25th, 2008
Posted by
Mike |
Autism rights, Neurodiversity, autism acceptance |
30 comments
A QUESTION
Over on Orac’s blog, Respectful Insolence, The Integral asked an interesting question.
Orac, and anyone else, I need help…..I want to respond to someone who believes that autism is a “disease”………I don’t believe that at all. Are there medical blogs/entries/articles that offer “proof” (for lack of a better term) that autism is not a true disease, like HIV or syphillis or other things like that?
thanks………I wouldn’t know where to start looking.
The Integral
SOME ANSWERS
Well, the president elect of the American Acadamy of Pediatrics, Doctor David Tayloe has stated on the Larry King Show that he regards autism as a disease.
KING: He might do a few things. What puzzles you the most, Dr. Tayloe, about autism?
TAYLOE: Autism is a disease that just doesn’t have an easily identify cause or therapy.
KING: You call it disease?
TAYLOE: Yes.
Doctor Grinker in Unstrange Minds wrote:
“In the view of anthropologist Arthur Kleinman, a disease occurs when something is wrong with our bodily organs and systems, whereas an illness is the experience of unwanted or negative changes in our bodies or our ability to function in society. Autism is thus both a disease and an illness, and it cannot be otherwise.” [Unstrange Minds page 230]
Furthermore autism is included in the World Health Organization’s International Classification of Diseases. You will find it in Chapter V, Mental and Behavioural Disorders. Dig deeper and you find autism in block F80-F89 Disorders of Psychological Development.
In the United States (and increasingly throughout the rest of the world) The Diagnostic and Statistical Manual of the American Psychiatric Association (DSM-IV-TR) offers an alternative system of classification that, like the ICD 10, also refers to autism as a disorder.
This all illustrates the folly of using quote mining to try and prove a point. Dr Tayloe is a pediatrician. He treats sick children. I imagine that he uses words like illness and disease as synonyms and has no reason to consider the technical differences between these two terms that Dr Grinker, the anthropologist describes. And it is very unlikely that either of them will have enjoyed the dubious pleasure of sitting on commitees that explore the nosological niceties involved in classifying and defining conditions and deciding whether they constitute a disease or a disorder or even a syndrome. (Asperger’s Disorder in DSM-IV-TR is Asperger’s Syndrome in ICD-10 for example.)
Joseph responded to The Integral and linked to his own blog post on the Emporor’s New Pathology. I particularly enjoyed his conclusion.
Calling something a pathology shouldn’t be a big deal. Does it matter to Halle Berry, for example, whether her diabetes is called a disease or not?
The short answer is that it is problematic when the so-called disease refers to your way of being. If it were no big deal, then shouldn’t the gay community be OK with homosexuality being called a pathology? The reasons why it is a big deal should be self-evident: (1) It redirects efforts and resources into finding an often mythical “cure”, which many of the individuals with the condition do not want; (2) It discourages accomodation; (3) It provides a justification for discrimination; and (4) If the condition is an important part of someone’s way of being, calling the condition a disease is effectively the same as calling the individual a disease. This is the case whether we’re talking about a disability or a difference.
I would quibble with the last point. The individual may feel that. But this does not mean it is the intention of those who call autism a disease. I do agree with Joseph that:
It’s really not something there is a right answer for based on what is known. It’s probably more of a political question at the moment.
DISCUSSION
My old philosophy tutor warned us against ”weasel words” that often have to bear the weight of the user’s political and ideological baggage. That is why we have to be careful when ascribing significance to ”expert” opinions and definitions. When challenged over whether autism is a disease, a disorder, a syndrome or even a difference our natural inclination is to follow The Integral in seeking out an authoritative source to justify the political burden that we attach to the concept.
But that just mirrors our opponent, who has their own agenda and their own equally authoritative sources. We have all been there, swapping PubMed abstracts in a vain attempt to trump the other person’s argument. It is better to challenge the other person to justify their argument.
Some examples:
-
“What do you mean by disease?”
-
“What do you mean when you characterize autism as a disease?”
-
“By your definition is Down’s Syndrome a disease?”
In my experience the important thing in discussions like these is not to persuade the other person that they are wrong. Instead, if you believe that reason supports your case, the important thing is to persuade your opponent to think. It is also incumbent on you to think as well. We all come to these questions with a predisposition to favour one side or another. This may be a reasoned decision based on previous knowledge and understanding or it may be more visceral.
Some more examples:
-
If it is wrong to eat mercury in a tuna sandwich how can it be right to inject it into babies?
-
If autism is a disease of course we ought to try and cure it.
-
Investigating the causes of autism is the same as wanting to get rid of all autistics.
-
Saying I have a disease is like saying I am a disease.
Sometimes gut feelings turn out to be correct. After all instinct preceded intellect in the evolution of life. But feelings should not be privileged over other forms of knowledge. Your strength of feeling is no more a measure of truth than your opponent’s equal and opposite feeling on the same subject. We often turn to science to settle these questions. But, as Joseph observed, how we characterize autism is as much a political question or [my preference] a philosophical question.
The problem with philosophy is that it is not science. The scientist uses tested procedures, equipment, measuring devices to produce data. And there are further statistical tools to analyze the data and point to conclusions. It is not perfect. Bias can interfere with the choice of subject, study design and the interpretation of results. Even so the bench work of the humblest scientist should yield results that are more objective than the discourse of the most eminent philosopher. And most of us engaging in these discussions are trained in neither science nor philosophy!
A CONCLUSION
I think that whenever we use words like disease, cure, neurodiversity, acceptance around autism we should not be asking are they true. Instead we should ask if they are helpful. Do they take the discussion forward or do they erect barriers? It all depends on the context. In the case of anthropologists like Dr Grinker who are examining autism in the context of the cultural response to difference, it makes sense to think of autism as a disease entity and compare it to other disease entities. Are attitudes to autism within a given society concordant with attitudes to other diseases or to disease in general? Diseases like childhood cancers can attract sympathy and the local community will rally round an affected family. The same people may recoil from a child with AIDS. Where does autism fit in this scheme of things?
I do not think it is useful for medical doctors like Dr Tayloe to think of autism as a disease. All their training leads them to seek cures for diseases, to normalize the abnormal. But if you think of autism as a different way of being the solution changes. Instead of trying to normalize the autistic person you are more concerned to optimize their development. And if that means accepting the parameters of their autism rather than seeking to eradicate them so be it. When I addressed a conference of health service professionals in London a few years ago I gave them this message.
It is often the case that, rather than trying to normalize their behaviour, we would do better to teach autistic people that their normality is different to ours. Then, instead of telling them to change all the time because we are right and they are wrong, we could teach them strategies to understand us and make allowances for our behaviour.
A Positive Role for Health Professionals
I think this view of autism could be quite attractive to psychologists and psychiatrists working in the health service. Instead of seeking to pathologize the behaviour of autistic people they would be freed to celebrate the positive aspects of autism and share this with parents who naturally want to love and value their child despite their difficulties. There is a lot of discussion about the need to mourn the loss of your ‘normal’ child and your hopes and expectations for him while you adjust to having an ‘abnormal child’ after diagnosis. It may be that what we really mourn is the lost opportunity for celebration. Autism appears to have taken this away from us and from our child. As Matthew once said to me,
“I’m sorry, Dad. I wish I could have been the boy you never had.”
Take the autistic child. Restore his self esteem and teach him to take pride in himself. Educate his parents in the best ways to raise him and teach them coping strategies for the challenges he will present. Counsel the brothers and sisters and teach them how to draw strength rather than weakness from their autistic sibling. You may not have a cure. But there are ample opportunities for you to heal.
April 27th, 2008
Posted by
Mike |
Autism, Neurodiversity, autism acceptance, politics, science |
32 comments
Orac has written this open letter. Please spread it far and wide.
Dear Mr. Kirby and Mr. Olmsted:
You are both journalists. I realize that neither of you at present work for the traditional press and that both of you seem to devote yourselves mainly to blogging (Mr. Olmsted at the Age of Autism and Mr. Kirby at the Huffington Post), but I have to believe that you both still consider yourselves to be at heart journalists. That is why I am writing this to you and posting it publicly on my blog. If you’ve ever read any of my posts on this issue, you probably realize that I strongly disagree with your positions and that at times I have been quite harsh in my judgment of articles you have both written. I am, however, hoping that for this one issue, upon which (I hope) we can all agree that you will for the moment put that aside and consider what I have to say. I am appealing for your condemnation of what has been done to autism blogger Kathleen Seidel.
The letter continues at Respectful Insolence
I hope that Olmsted and Kirby respond. As Orac points out later in his letter, if a vaccine injury lawyer is allowed to silence his critics with a subpoena, government and industry lawyers will take note and journalist bloggers like Olmsted and Kirby could be next in line.
April 6th, 2008
Posted by
Mike |
Neurodiversity, journalism |
11 comments
Kathleen Seidel’s Neurodiversity blog is an example to us all. She combines meticulous research with lucid prose. Her writing is as good as or better than much that passes for investigative journalism today. Now she has had to add the skills of a lawyer to those of a journalist in response to a subpoena from Clifford Shoemaker. This subpoena is so onerous and burdensome in its demands that it beggars belief, even in an overlawyered society like America.
Kathleen is being subpoenaed to testify at the taking of a deposition in the case of Lisa Sykes et al versus the Bayer Corporation and to provide
All documentation pertaining to the set up, financing, running, research, maintaining the website: http://www.neurodiversity.com that specifically relates to Lisa Sykes, her son, her lawsuits (NVICP and civil litigation, her church position, her family in general, her associates, her attorneys, her Citizen’s petition (FDA Filings and Court Filings) and her physicians. This shall include, but not be limited to bank statements, cancelled checks, online or offline donation documents, and tax returns. This to include the names of persons helping, paying or facilitating in any fashion these endeavours.
Whoa there!
- Kathleen is not a party to the dispute between Sykes and Bayer.
- She has had no contact with any of the parties to the dispute.
- The content of her website will have no bearing on the outcome of the case which will be determined by the quality of the expert testimony brought to the case by both sides, not the sleuthing of a citizen blogger.
- Nobody pays her to maintain Neurodiversity. She puts her own time and money into it.
It is obvious what Shoemaker is after. He is on a fishing trip to see what he can learn about Neurodiversity.com. Perhaps he thinks it is a front for Big Pharma and he can turn up something that will embarrass Bayer in court. He is only in it for the money and so cannot conceive how a private citizen could put so much effort into a resource like Neurodiversity.com and have the moral rectitude to blog about the abuse of autistics by quack practitioners and their attempts to use the courts to justify their behaviour and all with no thought of personal gain for herself.
But Shoemaker is not just fishing. It seems his intention to bully and intimidate Kathleen into silence. Because the subpoena asks for more, a lot more. Kathleen describes it thus in her motion to quash,
The subpoena commands production of “all documents pertaining to the setup, financing, running, research, maintaining the website http://www.neurodiversity.com“ – including but not limited to material mentioning the plaintiffs – and the names of all persons “helping, paying or facilitating in any fashion” my endeavors. The subpoena demands bank statements, cancelled checks, donation records, tax returns, Freedom of Information Act requests, LexisNexis® and PACER usage records. The subpoena demands copies of all of my communications concerning any issue which is included on my website, including communications with representatives of the federal government, the pharmaceutical industry, advocacy groups, non-governmental organizations, political action groups, profit or non-profit entities, journals, editorial boards, scientific boards, academic boards, medical licensing boards, any “religious groups (Muslim or otherwise), or individuals with religious affiliations,” and any other “concerned individuals.”
Could any of this be connected to the fact that 4 hours before being served with this subpoena Kathleen published a blog post The Commerce in Causation which enumerated legal costs paid to Mr Shoemaker by the National vaccine injury compensation Programe to the sum of $584,449.28.
Kathleen ends that post thus:
These nonprecedential decisions reveal only a portion of Mr. Shoemaker’s VICP income since June 2006; they pertain to fee requests to which HHS and the presiding Special Master raised few objections. In contrast, published decisions on fees and costs offer a more detailed view of controversies calling for a comprehensive judicial analysis, and of the billing practices of petitioners’ attorneys.
to be continued
Could the real purpose of this subpoena be less to do with what Shoemaker thinks Kathleen might know about Sykes versus Bayer and more to do with what he thinks she might know about him? Whatever his motives, he has managed to spread his name accross the Internet to almost universal opprobrium. Anti quackery blogs like Holford Watch, Science Bloggers, Autism Hubbers and legal blogs like the aptly named Overlawyered are all chiming in on Kathleen’s behalf. I Speak of Dreams is trying to keep a comprehensive list of them all. The total currently stands at 52.
Some voices have remained silent. Can you imagine the reaction in some quarters if the Department of Justice decided to subpoena David Kirby to discover who was leaking court documents to him in the Poling case. By his own admission
The unprecedented concession was filed on November 9, and sealed to protect the plaintiff’s identify. It was obtained through individuals unrelated to the case.
As a fellow blogger it ought to be in his interest to support Kathleen against this abuse of the legal process. How about it, David?
April 5th, 2008
Posted by
Mike |
Autism, Neurodiversity, journalism |
13 comments
The NYU ad campaign on autism and other disorders has quite rightly angered a lot of bloggers. I am struck by the reasoned responses of the writers, many of whom are autistic themselves. The campaign is supposed,
“to create awareness and spark dialogue about childhood psychiatric disorders”
It certainly provoked a discussion. The many people who have written to NYU to raise questions about this campaign have all been referred to Harold S. Koplewicz, M.D., Director, NYU Child Study Center. Dr Koplewicz is responding to all letters with a form reply that repeats, word for word the content of the Ransom Notes Campaign web page. When autistic children repeat a script over again and ignore what the other person is saying we call it echolalia. When directors of child study centers do it, apparently they are encouraging dialogue. Well, here are some contributions to the dialogue. Some of them are autistic but none are as echolalic as Dr Koplewicz.
Autism Vox
How we talk about autism—how we talk about autistic persons—directly impacts on how the public, how people, think about autism, and how they perceive and act towards autistic persons. Implying that an autistic child is like a child who has been kidnapped—-is a child who has been kidnapped—recalls older stereotypes of autistic children as “caught” and “imprisoned” in an “autistic shell,” and their real (normal) self “trapped” inside. It is not too hard to find references to autistic children that use such language, as in this commencement speech presented by Autism Speaks co-founder Suzanne Wright on May 15, 2007:
There is a beautiful little boy in my family who has been kidnapped by autism.
Abnormaldiversity
I am diagnosed with PDD NOS, which is a condition related to Asperger Syndrome and Autism (in my case I’m more AS-like), and with PTSD, which in my case results in depression and mild OCD-like behavior.
I would like to say clearly that there is an important difference between the two types of conditions I am diagnosed with. PTSD is something I have, which causes me serious psychological pain and does feel a bit like ‘being kidnapped’. In contrast, PDD NOS is something I am, which affects my thinking in such profound ways that I cannot imagine it any different, has many positive effects as well as negative ones, and only harms me in making me fit poorly within my environment - change the environment and I’m fine.
Blog from the Windowsill
A campaign to raise parental awareness about childhood psychiatric disorders is using ransom notes.Because parents of children diagnosed with these issues aren’t scared enough already, or doing their best already. My child is not a disorder and he is not a prisoner.
How about raising awareness by helping people with undiagnosed children recognize the signs? Not to mention the doctors who fail to notice or to believe parents reporting the early warning signs? (Yes, pediatrician who told me autism was fashionable, I do mean you.)
Whose Planet is it Anyway
Many of us do indeed feel as if we’re being held for ransom, but you’ve got the identity of the perpetrators all wrong. To find a clue, you might want to take a good look in a mirror. We—that is, America’s autistic citizens and our families—have had our lives hijacked in recent years by a greedy profiteering agenda that has deliberately and viciously stigmatized autistic people as broken, less than human, our souls stolen from us, and similar bigoted garbage, all for the purpose of making money by selling therapies. As a result, we now face prejudice and discrimination every day, in all aspects of our lives.
My thoughts on
Throughout my life, I have grown up with the stigma of being autistic and have found that most of my problems with autism are not so much with the disorder itself, but the negative press that seems to be coming in all directions from the media and those who claim to be working for our benefit. I work a full time job as an IT consultant at an oil company and already have a hard enough time living with being compared to Rain Man, tragedies, cancer and people asking questions about whether I am likely to snap and kill everyone, without this angle of terrorism being hoisted upon my shoulders and the shoulders of all other who are like me.
stop. think. autism.
How about a poster about how people who fidget or don’t make eye contact or may have difficulty in social settings be accepted? How about identifying these people as valuable members of society? How about respect? What about teaching kids it’s not right to bully someone, simply because they are different. This center had an opportunity, obviously they had the funds, to make a campaign that would de-stigmatize Autism and the psychiatric disorders they are talking about. But, they neither achieved the ability to create public awareness nor truly help the people they are supposedly advocating for.
Crimson Thoughts
At a minimum, it is insensitive to say such things, anyway. How pleased am I to learn that I have a ransom note written in my name? I can’t say I’m thrilled, especially since, if I’m captivity, I totally missed the point. I could say I have been locked away from social interaction in degree, but no more than a regular person is locked into certain types of thoughts. And if you’re locked away from something, it seems that you can be given something as well; my social distance has given me a perspective that, frankly, I like.
Mother of Shrek
And what does the future hold?
Some see autism as a weed that has to be plucked from the worlds garden. Autism is not like cancer, it is not an illness that needs to be cured. Autism is an integral part of our society. We shouldnt have to be subjected to things like this.
So there you have it. I urge you to follow the links and read these blog posts in their entirety. And if you are minded to write to NYU here is the reply you can expect to receive.
The NYU Child Study Center’s “Ransom Notes” public service campaign is designed as a provocative wake up to create awareness and spark dialogue about childhood psychiatric disorders, one of America’s last remaining silent public health epidemics. Twelve million American children and adolescents face daily battles with psychiatric disorders. Untreated, these children are at risk for academic failure, school dropout, substance abuse, suicide, unemployment, and imprisonment. Children who do receive appropriate treatment, however, can learn to function and thrive.“Ransom Notes” may be shocking to some, but so are the statistics: suicide is the third leading cause of death among young people ages 15 to 24, and serious emotional problems affect one out of 10 young people, most of whom do not get help. The strong response to this campaign is evidence that our approach is working. We acknowledge the challenges faced by individuals with these disorders and their families. We hope to both generate a national dialogue that will end the stigma surrounding childhood psychiatric disorders and advance the science, giving children the help they need and deserve. We want this campaign to be a wake up call. Please join the dialogue.
The NAS made a similar mistake a few years ago. They accepted a pro bono offer from an advertising agency. Fotunately the resulting campaign was baffling rather than insulting and exploitative. Now they consult with autistic people before launching campaigns about them. Perhaps NYU should follow their example.
EDIT
Thanks to Do’C over at Autism Street for alerting me to Ari Ne’eman’s note and call to action on the Autism Self Advocacy Network web site. ASAN have taken on the task of co-ordinating responses to the NYU ad campaign. Please visit their web site to learn how you can help.
December 9th, 2007
Posted by
Mike |
Autism, National Autistic Society, Neurodiversity, autism acceptance |
7 comments
Thoughtful Debate
The latest issue of Communication, the quarterly members magazine of the National Autistic Society continues to provide provocative and thoughtful contributions to the debates that feature so often in the autism movement.
We have Pat Howlin on the question of whether we need to differentiate between the condition of being autistic, which requires respect and understanding, and autistic spectrum disorders which require interventions. And she argues that these are not mutually exclusive categories. Lorna Wing discusses the need for a well thought out ethical framework within which genetic research can be conducted. Given that genetic research into causes and possible cures is going to continue anyway she wants it to happen within an ethical framework that respects the human rights of autistic people.
There are also features on siblings, home education and the experience of classroom assistants supporting autistic pupils in the mainstream.
Larry Arnold writes about his experience as the first ever autistic person to be elected to the NAS board of trustees. He writes about the need for the NAS to continue “to be an organization for the entire spectrum of autism” and reminds us that “newer organizations formed under the umbrella of neurodiversity and ‘aspie freedom’ … also need to be inclusive and work to include people who are not as intellectually advanced as they are.” And , as if to underline the point, there is also a feature on challenging behaviours. These are by no means the exclusive domain of so called ‘low functioning’ autistics. But for many families they define the experience of autism and seem to mark their children as different from the higher functioning autistics whose concern for acceptance and understanding is sometimes mistaken as indifference to the real suffering that can come with autism. This takes us back to Pat Howlin’s article on reframing our attitude both to autism and to autistic people. All in all a very stimulating issue which will provide me with plenty of material for future blog posts.
This shows that a national autism charity can make a serious attempt to embrace diversity and continue to address the problems that arise across the autistic spectrum. It will not always be plain sailing. With such a diverse constituency there are bound to be times when some groups will feel neglected or misrepresented. The current “Think Differently” campaign created a small storm amongst some parents that received extensive coverage in the Independent.
Some autistic adults were also put out when the same campaign referred to the “devastating effect on individuals and families” if the right support was not forthcoming. They feel that most people will miss the subtle distinction between this and the routine references to autism as “this devastating condition” by the epidemic mongers.
Thoughtless and debasing
What is certain is that nobody could miss the subtle message of this ad campaign, because there is none. Having just watched The Golden Compass I am reminded of the Gobblers who kidnap children in order to steal their souls.
This is not the latest offerng from Safe Minds or Generation Rescue. This is the New York University Child Care Center. And they do a similar job on ADHD, Asperger Syndrome and Bulimia. Whose Planet is it Anyway? and Autism Vox have both written thoughtful blogs about this campaign. The NAS takes respect for autistic people as its starting point. It will make mistakes. But it is unlikely to stoop to the level of misinformation and abuse that is apparently acceptable to New York University.
December 7th, 2007
Posted by
Mike |
Autism, Communication, National Autistic Society, Neurodiversity, aspergers, parents |
8 comments
Autism is a hot topic for scientists engaged in brain research. If you can link your research to autism it may help you to access additional funding that is available in the USA. In response to a determined campaign by parents and lobby groups Congress passed the Combating Autism Act which sanctioned a substantial increase in the funds available for research into the causes of autism. At the same time the high profile pressure group Autism Speaks has, by a series of mergers and alliances, notably with Cure Autism Now! and the National Alliance for Autism Research, emerged as a leading funder of autism research. In June it announced research grants of $15.2 million USD. Then there are private trusts like the Simons Foundation which is providing long term funding for autism research at Yale($2.5 million USD), Cold Spring Harbour, ($13.8 million USD), Michigan($2.8 million USD), MIT($7.5 million USD) and Rockefeller ($7.7 million USD).
This is serious money. One hopes that it attracts serious research. The Chapel Hill School of Medicine at the University of North Carolina is a serious research institute. According to Science Daily they have made an important discovery that
may lead to advances in understanding autism spectrum disorders, as recently, human neurexins have been identified as a genetic risk factor for autism.
They made this important discovery while researching the role of neurexin in Drosophila, that is fruit flies to the rest of us. Drosophila are an important part of the biological research toolkit. Their relatively simple genome and rapid reproductive cycle have made them a favourite of biologists researching the mechanics of evolution. But autistic fruit flies? Autism is a complex social disorder. Fruit flies are not complex social beings.
Neurexin is a basic prerequisite for neuronal connectivity. Without it the fruit flies barely survived. Movement was severely impaired. These are primitive creatures compared to us. I would anticipate that a similar lack in humans would have far more devastating results. Autism would be the least of our worries. Never mind. The putative autism connection cannot have done any harm in obtaining funding from
- the National Institute of General Medical Sciences,
- National Institute of Neurological Disorders and Stroke
- the National Institute of Mental Health
- the state of North Carolina.
Moving up the food chain we find a mouse study. Thanks to Mady Hornig mouse studies of autism have received a bad press. But this one is different. Thanks again to Science Daily for telling us that
Howard Hughes Medical Institute researchers have genetically engineered mice that harbor the same genetic mutation found in some people with autism and Asperger syndrome.
The gene in question codes for for a protein called neuroligin-3.
This protein functions as a cell adhesion molecule in synapses, the junctions that connect neurons in the brain and allow them to communicate with each other. Synapses are essential to all brain activities, such as perception, behavior, memory, and thinking. Südhof said that the neuroligin-3 mutation that his team recapitulated in the mice has been identified in some people with genetic conditions known as autism spectrum disorders (ASDs). Mutations in proteins that interact with neuroligin-3 have also been detected in some people with ASDs.
Neurexin is one of these detected proteins. (remember the fruit flies?) Is this a double whammy that damns autistic people/mice forever? Apparently not. These genetically engineered, autistic mice did rather more than “barely survive.” They showed diminished social interaction but improved cognitive performance compared to neurotypical mice. This is automatically seen as a deficit. But surely progress is driven by those individuals who turn their back on the herd and consider the external world? Never mind. In the wacky world of autism research, conformity is valued over diversity and sociability scores higher than intelligence.
But my take home message is that geek mice rule OK! [or at least they ought to]
September 6th, 2007
Posted by
Mike |
Autism, Autism rights, Neurodiversity, disability rights, science |
7 comments
The Sunday Times has published a thoughtful piece on autism by Mark Henderson, entitled ‘We ask ourselves, can we separate Alex and autism?’
Alex is 12 years old and described as being “at the less extreme end of the autistic spectrum.” This was not always the case. He regressed when he was 14 months old, losing speech and becoming so withdrawn that nursery staff thought he was deaf. Reading his mother’s description of his early years Alex’s autism is plain to see. But he had to wait til he was 5 to get a diagnosis. Julia, his mum, would welcome improvements in genetic screening if it meant that children like Alex did not have to wait so long for a diagnosis but some of her worries chime with those raised by Dr Russell that are discussed on my previous blog.
“It took an age to get Alex the help he needed,” she said. “The earlier you know, the better, and if this could help us identify autism as young as possible it would be wonderful.
“But I would not want a situation like Down’s syndrome, where you tell parents while the child’s in the womb and you have to make a decision.
“We also ask ourselves how much of Alex’s personality is Alex, and how much is the autism. Can we even separate the two?
“If you asked us could we have prevented it, we would have to think. Obviously in some ways it would be better for him, but he is happy in himself.”
Questions like these are bound to come up more often as advances in genetic research offer the prospect of earlier diagnosis and even the possibility of prevention or cure. Whether or not these possibilities ever materialize is not the point. But they are undoubtedly powerful levers for releasing the massive funds that genetic research consumes.
[NB. research costs may be massive in relation to the biological sciences. But they are still small by comparison to the costs incurred in particle physics. The Large Hadron Collider at Cern is costing in excess of 4 thousand million USD. Michael Wigler at Cold Springs Harbor has a budget of 14 million USD for his research programme into autism.]
The hype that surrounds genetic research is often encouraged by scientists eager to claim their portion of the research pie. This makes it even more important that journalists approach the topic dispassionately and are sensible to the dangers that Dr Russell raised in her article for Communication.
So it was a pity to read Mark Henderson’s latest offering in the Times, Hunting the gene that traps children in their own world which proclaims that
Parents and scientists are hoping that a new detailed analysis based on human genome will bring a big breakthrough within a year.
in the space of 4 paragraphs we get the following [emphasis added]
one of the most controversial and feared medical diagnoses of modern times
but it prompted thousands of parents to agonise over the cruel condition that seems to leave children walled off in a social and emotional world of their own, apparently beyond their love.
A disorder that was once rare has become alarmingly common,
the condition retains a brutal mystery.
This is exactly the sort of language that fuels fears about autism. It suggests that research into the prevention and cure of autism is almost an obligation. Those of us who argue for autism acceptance are accused of wishing a nightmare disorder on children. But children like Alex know happiness. They are not beyond love. They have a future. Or at least they might have a future if they are seen as people who can prosper with help and understanding, rather than the victims of a brutal mystery, at best to pitied, at worst to be feared.
All this is merely the preamble to a story about some research that is not even finished yet!
Within the next year a new study is expected to identify many of the genes that underlie autism for the first time.
I am always suspicious of claims made for a study that is still in progress. This is hype. And we have heard it many times before. My thanks to Michelle Dawson for reminding me that in February, 2004 Thomas Insel of the NIMH said this about autism in the New York Times
“My sense is that we are close to the tipping point in this illness, and that over the next couple of years we will have, not all of the genes, but many of the genes that contribute.”
Funnily enough, we are at the same tipping point three and a half years later.
The medics tell me we are at a tipping point,” said Dame Stephanie Shirley, the millionaire computer entrepreneur and philanthropist, who is the chairman of the research charity Autism Speaks and the mother of an autistic son.
My guess is that researchers always feel as though they are on the brink of a fantastic new discovery. That is what sustains them through the painstaking daily grind at the lab bench or crunching data in front of a computer screen. But the rest of us would rather wait for the results before we get too excited.
The article ends with another quote from Dame Shirley.
“It is quite possible that in five to ten years, we will have a real understanding of this disorder,” she said. “That’s a timescale that means today’s children may be helped.”
I am sure that Dame Shirley is already doing a lot to help her autistic son. But genetics is the science de jour. There is a popular belief that all behaviour is the product of specific brain areas that in turn are the product of the DNA code carried in our genes. Unlock the genetic code that governs our brains and we can manage our minds. We have been here before.
Once upon a time psychoanalysis was supposed to have all the answers. It gave way to behavioural science. New brain scanning technology marked the rise of cognitive neuroscience. Genetics is currently in the ascendency. Will it prove more productive than previous paradigms or do we need a new way of trying to grasp the reality of what it means to be human, maybe one that includes autism rather than trying to eliminate it? It is significant that all the genetic research so far has tried to identify genes associated with the deficits and impairments associated with autism. Nobody to my knowledge is trying to identify the genes responsible for the autistic strengths identified by researchers like Mottron and Gernsbacher.
I do not have a crystal ball. For what it is worth, in my opinion genetic research will expand our knowledge and our understanding. But it will not lead to any sort of a cure or an end to autism. Given our current level of knowledge that is probably for the best.
August 29th, 2007
Posted by
Mike |
Autism, Neurodiversity, autism acceptance, genetic research, journalism, language |
2 comments
This article is in today’s Guardian.
It provides a useful introduction to the positions of some of the supporters of autism acceptance, including myself and fellow bloggers Kev Leitch and Larry Arnold.
The article begins:
Today, an event run by and for autistic people kicks off in Somerset, the latest act of a burgeoning autism rights movement. Emine Saner reports on the campaign to celebrate difference, rather than cure it.
It contains some really good insights from the people she interviewed. For example, Gareth Nelson (pictured above) of Aspies for Freedom says:
I don’t think you should cure something that isn’t purely negative, It’s the same as black people, who seem to be more at risk of sickle cell disease than white people but you’re not going to attempt to cure ‘blackness’ to cure sickle cell.
The only unfortunate thing about the article is that it does play up the role of Aspies for Freedom (AFF) at the expense of other initiatives. I was surprised to read that:
Nelson, with his wife Amy, who also has AS, is leading the UK’s autism rights movement.
And I am not convinced that AFF has 20000 members when the discussion forum on their webite has less than 6000 members and many of those are from overseas. This is unfortunate as one of the strengths of the emergent movement for autism rights and acceptance for autistic people is that there are many voices and all are free to explore important differences as well as points of agreement. As an example, Larry Arnold and I work together within the structures of the NAS and are in broad agreement on many issues. But we differ sharply in our attitude to the role of scientific research in autism.
I would also have liked to read more about Autscape. This event is unique in Europe. It takes its inspiration from a similar event in America called Autreat. Like the AFF, Autscape began three years ago but it makes no leadership claims. Instead it aims to:
- Serve as a haven created by autistic people. An autistic space.
- Provide a venue where the majority of speakers will be autistic.
- Create possibilities within the conference for autistic people to communicate and socialise with other autistic people on their own terms.
- Educate and inform on issues arising from within the autistic community.
- Advocacy and self-advocacy.
- Promote acceptance of autistic people in their own environments.
- Enhance the lives of autistic people through empowerment, advocacy, and a nice relaxing time.
But these minor criticisms should not detract from a very valuable article in which the author shows respect for autistic people and accurately reports their views.
August 7th, 2007
Posted by
Mike |
Autism, Autism rights, Neurodiversity, aspergers, autism acceptance, disability rights |
36 comments
Moving tale that highlights genetic condition becomes sleeper hit of the year
Paul Harris in New York
Sunday June 17, 2007
The Observer
Like many good stories, The Memory Keeper’s Daughter begins on a dark and snowy night. But, unlike most first novels from barely known authors, the book has gone on to be one of the biggest hits in recent American publishing. It has sold more than 3.5 million copies in America and is due for publication in at least 15 other countries. It has done all this despite - or perhaps because - it is about one of the most emotional and difficult situations any new parents might face: a child being born with Down’s syndrome.
According to the Observer
The book has been a huge hit among parents of Down’s children and those who work with them. They have praised its portrayal of a child leading a full life and bringing happiness to a parent.
This is all very positive but I wonder, if the writer had interviewed people with Downs, would they have praised it because it portrayed a child with Downs bringing happiness to a parent? I have always found that the joy of parenthood derives from bringing happiness to my children. Perhaps this is what the writer meant, that parents can rejoice in their children’s happiness.
Apparently many prospective parents of Downs children do not believe that their child will be happy. Over 90 per cent of Downs fetuses that are identified by prenatal screening are aborted. The UK Downs Syndrome Association estimates that 10 in 10,000 live births are Downs. Earlier estimates, before amniocentesis became common, ranged from 15 to 24 in 10,000.
The relevance to autism
With Downs we know exactly where the genetic abnormality lies but have no idea why one of the parents produces a sperm or egg cell with an extra chromosome. We do not understand how this extra chromsome works to produce the features of Downs Syndrome and nearly 50 years after Professor LeJuene discovered the trisomy on chromosome 21 we are still a long way off being able to reverse or ameliorate its effects. All we can do is identify around a half of Downs pregnancies and offer an abortion.
A lot of money is being spent on research into genetic markers for autism. There is not just one, there are dozens of candidate genes for autism and, unlike Downs which is present from conception, there are as yet unknown environmental factors which may contribute to gene expression. Yet every discovery is trumpeted as leading to a possible cure or a genetic test to prevent autistic babies from being born.
This is damaging for a number of reasons.
- If a cure is thought to be just a few decades away this will divert funding way from research into ways of improving outcomes for people who are already autistic.
- To justify the huge expenditure autism has to be hyped as a health crisis that is devastating lives, when in fact it is lack of understanding and the irrational fears that this sort of hype encourages that are the biggest obstacles for many families.
- If autism is so unremittingly awful and the genetic solution is hyped as twenty years down the line parents of newly diagnosed children are going to be vulnerable to the biomedical quackery that is already entrenched among some sections of parents.
- Existing autistics will be viewed at best as victims and not as human beings with equal rights to acceptance and ethical treatment.
As public opinion increasingly lines up behind scientific opinion on the unfeasibility of the autism vaccine hypothesis it is important that we speak up for autism acceptance and challenge the triumphalism in those quarters of the mainstream medical and scientific research community that seek to eliminate diversity.
June 17th, 2007
Posted by
Mike |
Autism, Downs Syndrome, Neurodiversity, Quackery in Autism, disability rights, genetic research, parents |
7 comments
