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

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

Is autism a disease?

 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?”

• “Why is it important to you that autism is not a disease?”

• “What would it take to prove you wrong?”

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

More on NYU and Ransom Notes

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

Think Differently About Autism

This is the latest email from the Think Differently About Autism campaign.

Dear Mike
Thank you for supporting our campaign. Together we will improve the lives of the 1 in 100 people in the UK with autism by creating a better understanding of autism in society.

Today we launched the second part of our campaign film which highlights some the challenges a person with autism can face everyday. Though the film only shows one of the many ways autism can affect an individual, it is a vital tool to help increase understanding of autism. We need your help to ensure as many people as possible see this film!

Please forward on this email to all your contacts encouraging them to watch the campaign film and then signing up to support our campaign.

Coming in February 2008

In February 2008 the campaign will focus specifically on the issues facing adults with autism and call for the UK government to take action to address the desperate lack of services and support for adults with autism. We will keep you updated on how you can support this part of the campaign. For more information about the campaign please email us at thinkdifferently@nas.org.uk or call and leave a message on 020 7923 5788.

Thank you for your ongoing support!

The film is in two parts. I understand there is a third part scheduled. Part 1 is about a bus journey and appears to borrow from the work of Larry Arnold in Outside In. The big difference is that Larry uses film to explain what autism means to him and to argue his point of view. These short films are an attempt to illustrate particular aspects of autism and suggest to neurotypical viewers what it is like to be autistic.

The strength of this approach is that it makes very simple points clearly and leaves the viewer in no doubt as to the particular problem the film is meant to illustrate. The drawback is that autistic people are portayed as victims both of their disability and of our lack of understanding. They need our help to make up for their shortcomings.

This is part of the truth about autism. But it is not the whole story. Autistic people expend a great deal of energy accommodating our shortcomings. I found some of the so-called “normal” behaviour in the videos confusing or annoying. What are you supposed to do when complete stranger starts chatting away just because you sat next to them on a bus? And what about the receptionist who never stopped talking and ignored the young man’s repeated question? It would be interesting to watch the same videos with autistic voices commenting on the action.

So watch the films and let me know what you think. Tell the NAS as well. They are making an honest attempt to educate the general public about autism in ways that are respectful of autistic people. They deserve both our praise and constructive criticism.

November 27th, 2007 Posted by Mike | National Autistic Society, autism acceptance | 7 comments

Think Differently Campaign and Treating Autism

The Independent today published a letter signed by leading members of Treating Autism, [TA] a UK charity which believes that autism is treatable using the biomedical methods championed by Defeat Autism Now!  Their main complaint against the National Autistic Society’s Think Differently Campaign is that it paints too rosy a picture of autism, ignores the suffering of their children and refuses to acknowledge that autism is treatable using the aforementioned biomedical methods. Here is the letter in full, interspersed with my comments

We, parents of autistic children, wish to repudiate the National Autistic Society and its claim to speak for us and our autistic children. In particular, we demand the withdrawal of the latest leaflet (”Think Differently about Autism”) calling for public understanding of autism, complete with a website of supportive celebs.

Hope for people with autism does not lie in celebrity endorsement and a pretence that autism is normal but in the torrent of medical research pouring out of the United States. A model of autism as a genetic predisposition combined with precipitating environmental damages is being developed in the US, with new discoveries almost weekly. These developments offer real hope for those affected by autism.

The leaflet does not pretend that autistic people are normal. What is normal about the words on the front of the leaflet, “He gave you lovely hugs but then he’d bite you.” ? The autism model emerging in the United States is just a hypothesis. Nobody disputes the truism that autism results from a combination of genetic and environmental factors. But I am unaware of any “environmental damages” that have been reliably identified in the scientific literature.

What is the contribution of the NAS at this exciting time? The only contribution is a leaflet with pictures of people who “choose not to speak” and a plea for public understanding. The public should know that the NAS is riven with feuding between those who believe autism is “normal” and those who believe it is a disability which should be treated.

Actually the leaflet pictures one young adult who “prefers not to speak.” I am certain that the NAS would not have used those words without checking first with the young man in question and his family.

The NAS reflects the diversity of opinion that exists within the world of autism and we have some vigorous debates. But they are conducted with mutual respect by people who continue to work together for the greater good of all autistic people and their families. That is why the NAS has experienced 20 per cent growth this year. Not what you’d expect from an organization “riven with feuding.”

One of our number signed this letter en route to a conference run by the National Autistic Association of America whose speakers include a representative from the US-government National Institute of Health speaking on the part played by the environment in the autism epidemic. Only an ocean but a world away from the patronising claptrap put out by the National Autistic Society of the UK.

This is potentially misleading. Thomas Insel of the NIH is speaking at the NAA conference. But he is not a member of NAA and it is unlikely that he is going there to endorse the NAA opinion that there is an autism epidemic caused by the mercury content of vaccines, which can be cured by chelation.

The  NAS has a research arm called Research Autism. It has a website. None of this US research gets a mention. People with autism are sometimes said jokingly to be on another planet. It must be the one where the NAS is a well-informed, authoritative campaigning organisation and a powerful voice for change.

Research Autism has been established with NAS support but is independent of the NAS. It seeks to promote evidence based research on the efficacy of interventions for autism. If the US research is not mentioned it is because it does not satisfy Research Autism’s criteria for inclusion.

Autistic people sometimes refer to themselves as coming from another planet and they are not joking. They are made to feel like aliens by the lack of understanding and acceptance that they encounter on a daily basis. If the Think Differently campaign helps to change that, both it and the NAS will have nothing to be ashamed of.

November 8th, 2007 Posted by Mike | Autism, National Autistic Society, autism acceptance, autism advocacy, parents | 16 comments

a real debate about curing autism.

A recent report in the Guardian provoked some furious responses in their  Comment is Free section. The story itself was a fairly innocuous account of another study by Simon Baron-Cohen in support of his theory that exposure to elevated levels of testosterone in  the womb carries a predisposition to autism. The furore came in response to the final paragraphs.

If it does turn out ultimately that testosterone is a causal factor in autism it may not be possible or even ethical to do anything to change it though. Previous studies suggest that the level is mostly down to the child’s genes. Researchers don’t know which environmental factors are important.

“There is a very live debate about whether autism should simply be recognised as an atypical pattern of development like left handedness which doesn’t necessarily need treatment,” said Prof Baron-Cohen, “It just needs to be recognised as different and maybe supported educationally but not cured or eradicated.”

This is my summary of the criticism generated by Simon Baron-Cohen’s statement.

The very idea! How dare anyone suggest that it is OK to be autistic? It may be OK for high functioning Asperger types and their parents. But what about those of us who struggle daily with severely autistic children who cannot speak, who tantrum and self injure, who cannot manage their basic physical needs without support  and are going to end up in life-long residential care?

And it seems a very reasonable criticism to make. If your child is miserable or angry and has little chance of living an independant life why shouldn’t you want to cure him? I know parents who are actively seeking a cure for their child, who also argue for more acceptance and understanding from society for autistic people. Some of these parents are very supportive of autistic adults who have made it plain that they do not want to be cured. When I questioned this, one told me that she respected ANON’s right to be accepted for who he was but her child could not make that choice. He was low functioning and non-verbal. She would love him to progress to ANON’s level and be able to choose for himself. Until then she was going to carry on looking for a cure.

Reading through the comments on the Guardian website one or two things struck me. Parents who were angry with Professor Baron-Cohen were at pains to emphasise the negative aspects of their children’s autism. mickeydolenz wrote

Would I like my 2 autistic boys to live independently of me in the future? Absolutely. Would I want them to have families of their own? Absolutely. Would I want them to not be continuously frustrated and angry at the world around them? Of course. I really can’t see the argument against curing.

Then purelymedicinal, responded, declaring herself as Mrs Mickey D, and saying that she did not believe in a cure for autism because it was genetic. Then, when mogrammy intervened to argue that autism was a biomedical illness and the answers were all in Bryan Jepson’s new book mickeydolenz retorted,

mogrammy - no, sorry - that’s twaddle. It is a neurological condition - and that’s not theory, it’s fact. It’s utterly repugnant that snake-oil merchants like the one you cite make their living from the vulnerable.

Someone else chimed in to defend the Gluten Free/Casein Free diet and recommend Luke Jackson’s book on the subject. Luke is autistic. He is a clear example that Asperger’s Syndrome is not a mild form of autism. it can be just as severe in its own right as any ASD. The diet does not help with his autism. It helps with his food intolerances. mickeydolenz replied to this as well.

I utterly love my autistic children to pieces and I am at turns fascinated and depressed by their behaviour, as well as piss myself laughing with them. But I am ever curious as to how their brain works and how to unlock their world.

I am glad that mickey can laugh with his kids and that they are not “continuously frustrated and angry at the world  around them,” as he argued at the start of the discussion. This is not a cheap shot at mickey. At the start of the discussion he was angry at the idea that autism could be a positive thing. By the end he was arguing against the idea that his children’s lives would be forever joyless unless he bought the snake oil.

After someone posted an alert on one of the egroups on Yahoo the discussion was swamped for a while by mercury fanatics. But mickey, his wife and others kept the discussion going. They were asking questions and interested in each others answers rather than hammering home a point of view. I learned a lot from reading this discussion.

It confirmed that there are not just two camps - the curebie fanatics and the neurodiverse - slugging it out with each other in the blogosphere. The question is more complex than that.

I would like to think that those of us who advocate for autism acceptance are equally open to argument and discussion. We are not fanatics or timeservers. We are people who live and laugh and love and want, not better children, but a better world for our children. (with apologies to Paul Foot)

September 15th, 2007 Posted by Mike | Autism, autism acceptance, autism advocacy, autism parents, ethics | 13 comments

Apna Asmaan

“Learning to accept autistic kids is crucial.” 

So says Kaushik Roy, the father of a son who, according to his father “is mildly autistic, a slow learner and not like regular children.”  Roy is a successful businessman with a passion for film that is hardly surprising when you consider that he is the nephew of  Bimal Roy, one of India’s most successful film directors.

Perhaps more surprisingly, he took time out from a demanding business career to make a film, inspired by his son.  Apna Asmaan is a film I really want to see after reading Kaushik Roy’s inspirational comments on the film’s web site. There is also an interview in which he says

The film started in a personal way though it is not autobiographical. It started with a dream in 1999. I dreamt that my younger son Orko (who is mildly autistic, a slow learner and not like regular children) was doing extremely well in life, became famous but did not recognise me. Immediately, I told my wife Nina. This triggered the thought. My son was fine the way he is and he had started drawing and painting. We saw in him the urge to do something and he was also proud of the recognition he got when people appreciated his work. We had an exhibition of his paintings too.

[...]

To some extent, Apna Asmaan is real – the frustration of the parents when they have such a child is real. But the story had to unfold like a drama. I wanted to make a point come through the film – that is, learning to accept is critical. If not, the parents will be unhappy.

The brain booster in the film is allegorical. Turning a disabled child into a genius – though this is fictional, it is hugely relatable in India. People are looking at magical remedies – even visiting babas. So I brought this in and there are two doctors — one rational and the other maverick.

I have no idea if this film will make it to general release in the west. I do hope so. And I would appreciate the opinions of my Indian readership  [Ajai? Merry?] on this film.

September 4th, 2007 Posted by Mike | Autism, autism acceptance | 3 comments

autism, demons and disordered thinking

Kev has just blogged about an interesting discussion on ABMD, an email list devoted to biomedical interventions for autism. The bare bones are that a parent asked some obvious questions about how many recovered kids there were and where was the research that followed them up. From the subsequent replies three points struck me.

 1. The Biomedical Approach is not a cohesive whole

Within the biomedical movement there are different strands of opinion. I remember discussions ten years ago about biomedical interventions in which vaccines were barely mentioned, if at all. The received wisdom then was that autistic kids were more prone to infections than their NT peers. Ear infections seemed a common culprit based on parental anecdotes and strep was in there too. (NB Both these infections regularly afflict non-autistic kids as well.) Antibiotics were prescribed that got rid of the infections but also disrupted the beneficial bacteria in the children’s guts. This led to yeast infections which led to leaky gut syndrome and allowed partially digested proteins to pass through the gut into the blood stream.

Some of these proteins would cross the blood brain barrier in sufficient quantities to bind with receptors in the brain and create a condition analogous with opium addiction. When your child was happy, flapping and rocking, he was actually high on the effects of these proteins that had a narcotic effect on his brain. And when he was tantrumming, self injuring and screaming he was suffering the withdrawal symptoms because he needed another fix of the foods that fed his addiction.

The ‘cure’ was simple enough. Exclude the guilty proteins with a gluten and casein free diet. Heal the gut with antifungal drugs and use vitamin supplements to restore a healthy balance. The science behind this theory has never been adequately tested. It could be that some autistic people do have a natural tendency to react badly to certain foods. Avoiding these foods will avoid the bad reactions. Will it avoid the autism? That depends on whether the dietary problems cause the autism or the autism causes the dietary probems. Or it may just be an unrelated coincidence.

Even if it turns out to be nonsense this is fairly benign nonsense. Plenty of people with food intolerances survive on a diet that excludes dairy, wheat and similar grain products. So can autistic people. But somewhere along the line vaccine damage and heavy metal poisoning got factored in and remedies like mega doses of vitamins, chelation, lupron injections and other powerful biochemical interruptions to the systems of autistic children were introduced. I take comfort from the fact that parents and physicians who favour the old dietary and nutritional interventions are not all convinced by the science or the ethics of the newer, more radical interventions.

2. Recovery Does Not Mean Cure

Some of the parents reported how their child had ‘recovered’ from autism and continued to improve on biomedical interventions. Others reported on ‘recovered’ children who were still autistic! Recovered seems to mean being mainstreamed for many parents. If the kid can manage in a regular classroom they are deemed to be ‘cured’ or ‘recovered’ or ‘rescued’ or whateve the word of the day that is used to describe inclusion.

Essentially these parents are saying that, “Bad things happen to kids who stand out, who are different. The fault is with the child. If I can make my child indistinguhable from his peers he will be accepted. I want a Stepford child.”  The kid has to act normal whether he is or he isn’t.

3. Parents intervene because we have to do something.

A lot of parents seem to be long term users of biomedical interventions who persist despite the lack of success. They remind me of the parents in the Autism Speaks video who were following the same interventions. At the time I wrote this.

Some of those in the video referred to doctors’ appointments, therapies and interventions costing tens of thousands of dollars a year. But the parents seemed not to expect them to work. They talk of a lifetime of battling with autism and expect their children to still be autistic when they, the parents are dead.

Autism is characterized as a barrier to be overcome. But they do not hold out much hope for their own children. They are trying every therapy under the sun but the big picture is about research that will lead to prevention and cure.

For me the video is not about autism as such. It is about a particular psychological response to autism. There is an ideology around autism that helps to shape that response. In opposing the video I am not denying the experiences of parents. I shared many of those experiences when my son was growing up. I am not denying the lack of services or support. I am not denying the lack of understanding outside the autism community. I am not denying that autism itself can be the source of immense difficulties.

I am concerned to deny the ideology that demonizes autism and distorts the facts in order to justify itself.

These parents persist in fighting their demonized version of autism because they have to. To do otherwise would be to give up on their children - the ultimate betrayal. If only they could give up on their demons instead and accept their children for who they are. That is when the real fight begins, when you fight with your child against a system that denies their right to acceptance, understanding and support.

September 4th, 2007 Posted by Mike | Autism, MMR, autism acceptance, vaccines | 9 comments

A tale of two autisms

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

‘It is not a disease, it is a way of life’

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