Petition the UK Government for Autism

Barbara Wilson, the National Autistic Society Regional Councillor for the South West has had a petition to the Prime Minister accepted by the office of the Prime Minister. UK citiizens can sign the petition on the Prime Minister’s website

The petition reads:

    We the undersigned petition the Prime Minister to make it
    compulsory for Local Authorities, NHS and Social Care to work
    together to produce a strategy with guidelines for Autism /
    Asperger syndrome  including diagnosis, pathways to services
    and criteria that are realistic and address supportive and
    lifelong support,rather than waiting for people to fall into
    crisis before services respond.  Also to create a national data
    base of the numbers of people diagnosed as being on the ASD
    spectrum.

    for people on the Autism/Asperger Spectrum specifically to
    address the issues on Fair Access to Care and support that many
    consequently fall through the services. Also adopting a clear
    pathway to services for adults on the spectrum who currently
    are referred to as ‘high functioning’ rather than awaiting
    their move into ‘crisis’ To include more preventative and
    supportive approach. We need to have a national data base on
    the numbers of people affected.  Currently services are only
    estimating numbers consequently do not see the need for
    strategies and specific services.

I am sure this petition will strike a chord with many people in the UK and chime with the experience of autistic people and their families around the world. In the UK we have plenty of good practise guidelines for health, education and social care but very little effort on the part of government to mandate these guidelines or provide adequate funding. Sometimes these guidelines come together and are implemented in the provision of children’s services. Even so,

• Over 50% of children are not in the kind of school their parents believe would best support them.

• 66% of parents said their choice of school was limited by a lack of appropriate placements for children with autism in their local area.

• Only 30% of parents of children in mainstream education are satisfied with the level of understanding of autism
  across the school.

• In mainstream schools only 27% of parents say that all their child’s teachers could adjust their approach and
  teaching materials - and therefore meet their legal duties under the SEN and Disability Act (2001).

• Special Educational Needs Co-ordinators (SENCOs) are responsible for co-ordinating provision for children with
  autism in schools, yet 23% of parents are dissatisfied with SENCOs’ level of understanding of autism.

• Over 40% of children with autism have been bullied at school.

• 45% of parents say it took over a year for their child to receive any support. 

• There are more appeals to the Special Educational Needs (SEN) and Disability Tribunal in England about
  autism than any other type of SEN. 79% of parents who appealed to the Tribunal in this survey won their case. 

• Parents say the biggest gap in provision is social skills programmes. 

• 1 in 5 children with autism has been excluded from school, and 67% of these have been excluded more than once.

• Only 53% of young people aged 14 to 19 years have transition plans, falling to just 34% of students in mainstream schools.

Source: Make Schools Makes Sense Autism and education: the reality for families today. (NAS 2006)

The Makes Schools Make Sense Campaign did make a difference. The government has responded to our concerns and made a number of commitments designed to improve education for autistic children in England. That still leaves the rest of the United Kingdom. But it is a start.

If the situation for children is bad, then for adults it is dire. This year, the Think Differently About Autism Campaign is focusing on adults under the slogan “I exist” Its main points are that,

• Nearly two thirds (63%) of adults with autism do not have enough support to meet their needs.

• 92% of parents are worried about their son or daughter’s future when they are no longer able to care for them.

• 61% of adults with autism rely on their family financially and 40% live with their parents.

• 60% of parents believed that a lack of support has led to higher support needs later on.

• At least 1 in 3 adults with autism are experiencing severe mental health difficulties due to a lack of support.

 Source: I Exist. The message from adults with autism in England (NAS 2008)

Barbara’s petition can only help to focus attention on these problems. Autistic people and their families, along with autism professionals and advocacy organizations spend a lot of time arguing about important issues like causation, cure and the various interventions that are supposed to help autistic people fit in with society. But while we may disagree on how to assist autistic people in coping with society, we should all agree to support Barbara’s petition and campaign to make society better able to understand and cope with autism. 

NB. Throughout this blog post I refer to England and link to materials pertaining to NAS campaigns in England. This is a consequence of the different forms of government that pertain throughout the United Kingdom and the way these differences impact upon the provision of services. There are parallel campaigns in Scotland, Northern Ireland and Wales that take account of these differences.

April 23rd, 2008 Posted by Mike | Autism rights, National Autistic Society, adults, autism advocacy, disability rights, education, government, parents | 4 comments

A real boy and real facts about autism

Sunday’s Observer featured one parent’s account of the joy and the difficulty that comes with raising a severely autistic child. “Our struggle to understand David’s secret autistic world”  Christopher Stevens and his wife, Nicola have also written a book about their son, A Real Boy, which received this endorsement from NAS president, Jane Asher,

This wonderfully honest book tells us a great deal, not only about autism, but also about the extraordinary tolerance and unselfishness that is born out of unequivocal love. At the same time, it reveals some uncomfortable truths about the struggle it takes to access the rights of those with disabilities in our so-called civilized society.

Today I want to leave aside the family’s personal story in order to respond to Christopher Stevens’ argument that

1. Prior to 1944 autism was virtually unknown.
2. Autism was still very rare when he was born in 1964. But it has spread rapidly since then.
3. The most rapid growth has been in those severely affected, like his son. 
4. Autism is so distinctive that it is unfeasible to suggest that it was somehow missed by everybody before Kanner. Kanner noticed something new.
5. Autism is a twentieth century phenomenon that has grown to epidemic proportions in the 21st century.

HISTORY

Stevens seems unaware of a long history of autism that fills the void between Victor and Kanner when he writes:

Children like David were almost unheard of before Kanner. There’s one account, from Napoleonic France, of a boy found living wild in woods near Toulouse. Like our son, he treated people as tools. When he wanted to ride in a wheelbarrow, he would grab his doctor by the wrist, drag him across the garden, press his fingers around the handles and then climb into the barrow. And there’s a brilliant, beautiful report from 1869 by Mark Twain – he describes a piano recital in San Francisco by Blind Tom, an apparently autistic savant who could barely talk, yet who could imitate any sound, learn three melodies simultaneously and reproduce duets note for note at a single hearing.

Perhaps he is not aware of the paper by Shattock and Waltz who found evidence for autistic disorder in 19th century London based on “case histories from the notes of Dr. William Howship Dickinson at Great Ormond Street Hospital for Children.” Darrold Treffert has also paid tribute to Langdon Downs for  identifying autistic children in 1887.

Autistic Disorder, while not named such until 1943, has existed for the same long time as other forms of developmental disorder and mental retardation. It is not a new disorder. In his writings in 1887 Dr. J. Langdon Down did not separate out autistic Disorder from mental retardation, but there was group of patients sufficiently different from his ‘congenital’ and ‘accidental’ forms of mental retardation that he felt compelled to set us a new category-’developmental’ — to describe a group of patients “impossible to include” in his two other categories of mental retardation. As he describes some of the traits and behaviors of some of these persons — “world of their own,” talking in the “third person,” being in a “dreamland,”"echolalia,”"self-contained and self-absorbed,” “automatic and rhythmical movements,” a countenance and “repose of brightness and intelligence,” lack of “physical features” of retardation, “no response in words,” and indeed elements of savant syndrome itself in this special group of persons — those point in the direction of what is now called autistic disorder as being the appropriate classification for some of these individuals whom Dr. Down had classified as mentally retarded. 

Stevens also suggests that Kanner coined the term “autistic,”  when he writes that:

The idea that one in 100 British children is affected by a mental disability that was almost unknown a generation ago is shocking and many people try to fend it off. ‘Isn’t this all down to better diagnosis?’ they suggest. If they could see my son, blind to danger and deaf to our pleas, they’d realise it wouldn’t take Sigmund Freud to spot there was something odd about this boy. Freud wouldn’t have said David was autistic, though – he was dead by the time the word was coined in the early 1940s.

In fact the term was coined by Eugen Bleuler, in 1910 when writing about Schizophrenic negativism.

“… schizophrenics who have no more contact with the outside world live in a world of their own. They have encased themselves with their desires and wishes [...]; they have cut themselves off as much as possible from any contact with the external world. This detachment from reality with the relative and absolute predominance of the inner life, we term autism,”

Bleuler was a contemporary of Freud. Together with Jung they had founded the journal Jahrbuch für psychoanalytische und psychopathologische Forschungen in 1908. Bleuler also gave us “schizophrenia” to describe the condition then known as dementia praecox. He did not believe it was a dementia. Nor did he believe that it was necessarily a disorder of childhood. The irony is that following Kanner’s discovery of “autism” the confusion about the relationship of autism to schizophrenia persisted at least until 1979 when the prestigious Journal of Autism and Childhood Schizophrenia changed its name to The Journal of Autism and Developmental Disorders.

I find it significant that Kanner, publishing in the USA in 1943, and Asperger, publishing in Austria in 1944, independently presented very similar case studies that described their subjects as autistic. Is this really because autism suddenly emerged from nowhere in the middle of the last century? Or was something else happening here?

We have the evidence that autism was identified in the 19th century by Langdon Down, who called it developmental mental retardation. Bleuler coined the term autism in 1910. (It is interesting to note that while Asperger acknowledged Bleuler in his writings Kanner never did, even though he must have been familiar with Bleuler’s work.) 

Edit: This is not true. Thank you to Raj for this reference where Kanner does discuss Bleuler’s use of the word, “autism.” 

Why the long wait until autism as a developmental disorder of childhood entered the literature?

The twentieth century was also remarkable for another phenomenon. Institutional care, or incarceration, depending on your reading of history, of people with mental health problems grew massively in the first half of the century and then went into an even more dramatic decline. In Unstrange Minds Grinker reports that

Most of these institutions were less than thirty years old, but by 1904, 2 in every thousand Americans lived in one. By mid-century, more than 500,000 Americans lived in mental institutions, more than 3 in every 1,000. [page 37]

Today there are only 2 in 10000 Americans occupying long term mental health care beds. It is not too  fanciful to suggest that many of those Americans in the past probably had an autistic spectrum disorder. The UK experience mirrors that of the USA. In 1999, after a significant downsizing of long term hospitals in favour of care in the community, the NAS published research that showed a 2.4% prevalence of confirmed autistic spectrum disorder amongst inmates of secure psychiatric hospitals. The proportion was probably much higher in the past when institutional care was the norm.

Kanner stressed the professional status and educational attainments of the parents in his case studies. Asperger made similar observations. This is hardly surprising. Given the limited availability and the expense of social care at that time, only wealthy, educated people would be in a position to seek out an eminent child psychiatrist like Kanner rather than place their child in a state institution.

The remarkable thing is not that Kanner was seeing so many autistic children where none had existed before, but that he had the insight to grasp the common feature that united these apparently diverse individuals. Just as Down had viewed similar children through the paradigm of his time as developmentaly retarded, by the mid 1940s the time was right for an exceptional mind like Kanner’s to bring new insight to the questions these children raised.

EPIDEMIOLOGY

There are more difficulties when Stevens tackles the thorny issue of epidemiology.

Autism has spread so rapidly during my lifetime that many people are sceptical about the scale of the problem. In 1964, the year I was born, the Society for Autistic Children (now the National Autistic Society) issued an appeal through the Guardian : research suggested that there should be 5,000 people with autism in a British population of 50 million… and it could only find 2,000. Ten years later, it still hadn’t found the full 5,000.

This is a delightful story but it actually undermines Stevens’ argument. If it was so hard to find these very distinctive children 40 years ago are we supposed to believe that they did not exist; that there were actually less than one in 50,000 autistic children between 1964 and 1974? But never mind what research suggested in 1964. In 1966 Lotter carried out definitive research with the first ever epidemiological study of autism (in the English county of Middlesex). Using narrowly defined diagnostic criteria based on Kanner’s case studies, Lotter recorded a prevalence of 4.5 in 10,000. In my opinion, David Stevens would probably have met those criteria, based solely on Christopher Stevens written accounts of his son.

Lotter’s research showed that there should have been 22,500 people like David in 1964, not 5,000. And the NAS, who were probably best equipped to find autistic people, could not find a fraction of them, even after ten years of searching. I can believe that. Autism is not that obvious if you do not know what you are looking for. And it is easily misdiagnosed if you are looking for something else.

In Cumbria, where I teach, there were no known cases of autism in the entire county in 1983. Yet I can think of at least 5 children in the special school where I taught in 1983, who would have met the criteria if they had been tested. The NAS has a new campaign about autistic  adults called I exist. It reports that in Cumbria the number of autistic adults known to the authorities increased by 60% between 2003 and 2006. It is reasonable to expect that a lot of these adults would have been undiagnosed children back in 1983.

Stevens goes on to argue:

Today, the society estimates there are 525,000 people with autism. American figures suggest that, among the autistic population, the proportion of severely affected people, such as my son, is four times higher than it was 20 years ago. In other words, autism is spreading like an epidemic and the worst cases are multiplying even faster.

It is important to remember that those 525,000 people are not all like David. They are not the children that Lotter was finding in 1966. In 1978 Lorna Wing, a psychiatrist who was also the mother of an autistic child and a founding member of the NAS, along with a psychologist called Judith Gould, (who, 20 years later, was to diagnose my 12 year old son with Aspergers Syndrome) went looking for Lotter’s 22,500. If we are to be strictly accurate they actually went looking for the proportion of those 22,500 in special education in Camberwell in Middlesex and found them all. But for every Kanner autistic child they found there were another 3 who were clearly autistic but did not fit the precise criteria devised by Lotter. These other children all had what Wing and Gould described as “the triad of impairments.”

When Wing and Gould published their research in 1979 autism was not even included in the diagnostic manuals of the time. Kanner’s autism was included in 1980 (DSM III). Wing’s autism (the triad of impairments) had to wait until 1987 (DSM III revised).  In 1994 DSM IV finally included Aspergers Syndrome. Again, it was Wing who introduced this to the English speaking world.

CONCLUSION

1. Autistics like David have been recognized since Kanner’s seminal paper in 1944. Acording to Lotter in 1966 they number between 4 and 5 in 10,000. They were clearly around in Victorian times when they were seen as a subset of the mentally retarded and not as a distinct diagnostic entity.
2. In 1979 Wing and Gould confirmed Lotter’s finding and added another 16 in 10,000 who were clearly autistic but did not match the precise criteria used by Lotter.
3. Subsequently Wing expanded the autistic spectrum by incorporating high functioning individuals of the Asperger type. Along with less specific diagnostic categories like atypical autism and pervasive developmental disorder - not otherwise specified (PDD-NOS) this added to the numbers by another 80 in 10,000 to give us the current 1% with an autistic spectrum disorder.

So Stevens is mistaken when he argues that:

Better diagnosis is simply a side-effect of the autism epidemic: we recognise it more easily now, because there’s so much more of it about.

The four fold increase in severe autism that happened in the UK thirty years ago (not the USA twenty years ago as Stevens stated)  was the result of  redefining our ideas about the nature of autism. It is not better diagnosis. It is different diagnosis.

I am aware that this blog post may seem a disproportionate response to another parent who was just expressing a personal opinion in the course of a newspaper article. But the Observer is widely regarded as a quality national newspaper in the UK. The last time they published a feaure on autism it had to be withdrawn on legal advice on account of the inaccuracies and misrepresentations it contained. Nevertheless the most pernicious of these inaccuracies - that leading UK researchers had found that there were now one in 58 children with autism - continues to circulate on the internet as a statement of fact. I offer this as an explanation and not an apology for my reasons for taking another autism dad to task in such detail. Christopher Stevens has written an insightful and honest account of raising David that deserves wide circulation. But his misleading ideas about the history and epidemiology of autism deserve to be challenged in equal measure.

March 21st, 2008 Posted by Mike | Autism, Autism epidemiology, National Autistic Society, Uncategorized, autism parents, journalism | 24 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

Communication, Respect and Autism

 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

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

Autism Education Trust

The National Autistic Society website proudly proclaims that they are now hosting the Autism Education Trust.

The National Autistic Society is delighted to host the Autism Education Trust and welcomes the opportunity to work in partnership with colleagues across the sector. The trust will play an important role in sharing best practice, influencing decision makers, developing high quality support for early years and school staff and involving children with autism and their families in shaping provision.

So far so good.

The Autism Education Trust (AET) is a new organisation established with funding from the Department for Children, Schools and Families. It is dedicated to coordinating and improving education support for all children with autism  in England.

About the AET
The aim of the Autism Education Trust is to create a platform for voluntary, independent and statutory providers to plan and develop appropriate autism education provision across all education settings, including early years.

This is excellent news. I went straight over to the Department for Children, Schools and Families to get some more information … and found no mention at all of the Autism Education Trust. So back to the NAS website to learn that the Department for Children, Schools and Families has only made an initial commitment to fund this for one year. It is actually an initiative of the The National Autistic Society, TreeHouse  and The Council for Disabled Children.

The best estimates available to the UK government indicate that perhaps 1% of school children are on the autistic spectrum. Is it me or should the government be making a  more long term commitment to financing this initiative?

Never mind, the money is there for now and full marks to the voluntary sector for taking the initiative and persuading the government to provide some backing. The question is, “How can we make the best use of this opportunity?” I suggest that people contact Judith Kerem, the project manager <info@autismeducationtrust.org.uk> if they have anything to offer to this project.

November 18th, 2007 Posted by Mike | Autism, National Autistic Society, aspergers, education, government | no 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

Think differently about autism

Today the National Autistic Society launches its “think differently” campaign. We want to spread the word that autism need not be so devastating and disabling if only  people would take the time to understand it and make the effort to adapt our schools and workplaces and public spaces to make them autism friendly.

To that end we have launched a website http://www.think-differently.org.uk/ and established a presence on MySpace and Facebook.

Download the campaign pack and join us. And check out yesterday’s article in the Observer for some useful background information. And for some grim reading about why we need to think differently read yesterday’s blog that features a Sunday  Times article on the truly awful Judge Rotenberg Center in America.

October 29th, 2007 Posted by Mike | Autism, National Autistic Society, aspergers | 7 comments

Autism, Genetics and Research Ethics

The latest edition of Communication, the members magazine of the National Autistic Society contains two interesting articles on genetic research.

GENE GENIE by Professor Anthony Bailey

The first  article, by Professor Anthony Bailey of Oxford University’s Autism Research Unit, seeks to summarize recent developments in genetic research. Considering the complexity of the subject and the nature of his audience (mainly parent members of the NAS like myself with no specialist scientific training) he does a remarkable job in under a 1000 words. I  find that those experts who can write coherent and concise accounts of their work for a lay audience are usually the ones with the soundest grasp of their subject matter. Professor Bailey is no exception.

He starts by emphasizing how little we know.  This cannot be stressed too much. There have been a spate of recent reports in which journalists, and some scientists who ought to know better, have hyped up the latest genetic “breakthroughs” as harbingers of an imminent cure. But all we have so far are “candidate” genes. This is not to diminish the work of the scientists involved. Genetic research has been marked by a massive collaboration of scientific and funding institutions. It is detailed and difficult work that is only now beginning to accelerate with access to improved technology.

The most likely candidates are genes on the long arm of chromosome 7 and on chromosome 2. Again, caution is necessary. These are not genes for autism. They are potential genes for autism susceptibility. There is no single gene for autism. According to Professor Bailey, “the risk of developing autism seems to be conferred by the interaction between at least 3 or 4 genes (and possibly many more) and there were no clues as to what these genes might code for.”

When a gene is finally identified scientists will still want to learn more about what it does, when it is expressed and which other genes it interacts with. They will also try and identify the environmental factors at work. These factors need not be “known neurotoxins.” They may be neutral or even beneficial in the absence of particular genetic combinations.

[OK I realize that some of my readers may regard autism as a beneficial outcome. I look forward to your comments so that we can explore the nuances of meaning around accepting autism and welcoming autism.]

Our knowledge of genetic factors in autism leans heavily on work with families where more than one sibling is affected.  The evidence from twin studies is that autism is a highly heritable condition. So it makes sense to look at families where this is most obviously the case when seeking the genetic causes of autism. But many parents who read Professor Bailey’s article will have no obvious genetic traits of autism in their families. A new study may help to explain this. Dr Michael Wigler is a molecular geneticist at Cold Spring Harbor Laboraory in New York and he has just published a pilot study suggesting that spontaneous mutations in the parents’ sperm or egg cells may be the cause of autism in a majority of cases. Prometheus discusses this in more detail on his blog, Photon in the Darkness, and provides a link to Dr Wigler’s paper.

This all goes to show how complex the science is. It is increasingly unlikely that we will find a simple genetic cause or even a simple genetic predisposition that relies on an obvious and preventable environmental trigger for autism. I am fascinated by the science of autism but it is not going to provide any immediate answers or easy fixes. Social policy will have a greater impact on the quality of life for autistic people in the foreseeable future. This is why public attitudes to autism are so important - a point addressed in the second article.

CHOOSING THE FUTURE by Dr. Phiippa Russell

Dr Russell is a Disability Rights Commissioner and Disability Policy Advisor to the National Childen’s Bureau. She wrote about the ethical implications for genetic testing and research. She began by pointing out that alongside the potential health benefits of genetic science there is also the danger that “the primary focus of new genetic technology might not be on improving the quality of life and healthcare for vulnerable individuals. Instead, it could be lead to eugenic attitudes, which devalue disabled people and encourage discrimination in employment and other areas of life.”

There are some areas where genetic screening ought to be non-controversial. But what if it leads to discrimination in obtaining employment or essential life insurance? Dr Russell has an interesting take on this. She argues that women with a known genetic susceptibility to breast cancer may acually live longer than other women who are less likely to have regular mammograms and more likely to have their cancer detected later, when treatment options are less effective.

This kind of logic may appeal to actuaries. But most people will react negatively to the idea of disability, especially if it is a genetic disability that is  predictable and, disregarding David Hume,  therefore ought to be prevented. Dr Russell thinks that “If we accept this view, then we risk

• reducing embryos, foetuses and, in consequence, individuals to their genetic characteristics, thereby reversing the progress made concerning human and civil rights for disabled people
• increasing responsibility (and social exclusion) for familes with disabled children, where the disability was related to genetic predisposition
• ignoring the multiple talents of disabled people and the real contribution which they make to family and society.”

Genetic science will advance, regardless of the ethical dilemmas it creates. People with disabilities ought to benefit from these advances. But according to Dr Russell “there are challenges in avoiding unnecessarily negative pictures of quality of life and value to the local community. “

She does not mention autism by name but goes on to say, “Many readers will be both aware and proud of their disability. It is unique to them and carries benefits as well as some challenges.”

Dr Russell ends with his quote from an unidentified disabled man.

“Disabled people themselves must join the debate about the ethics of genetic testing - you cannot close Pandora’s box once it has been opened, but the challenge is in using new information proactively to improve quality of life, not to shut down someone’s work and other opportunities because of poor understanding and low expectations. Knowledge is power - but it is essential that it is controlled by the person directly affected and used for his or her benefit, rather than used by others as a means of social exclusion.”

This is one reason why next month’s meeting on the Politics of Autism is so important. Anyone who can attend should ring up and book a place now.

According to Communication “The NAS is keen to hear the views of members and others on this complex issue … email communication@nas.org.uk with the words ‘gene ethics’ in the subject line.” The full articles in Communication are only available to NAS members.  If you want to join email membership@nas.org.uk

I am greatly encouraged by the NAS  inviting this sort of debate. I do urge people to respond.

August 27th, 2007 Posted by Mike | Autism, Autism rights, National Autistic Society, disability rights, ethics, genetic research, science | 9 comments

Biomedical Interventions Part 2

My article on biomedical interventions for autism in Communication has provoked a largely hostile response. Some people disagreed with me. That is fine. I welcome debate. Others thought the NAS was wrong to publish my article at all.

My article was clearly labelled as an opinion piece. I was described as a National Councillor but that does not mean that I speak for the NAS. It means that I was elected by members who broadly support my views. There are also councillors who do not share my views. The NAS has always been about plurality. That is our strength. We are united by our concern for autistic people, not by our adherence to this or that theory of autism, or by our support for one intervention above all others. Plurality also means that when my term is up you get the chance to re-elect me or not. Those members threatening to resign because of my article really ought to stay and vote me out next time if they feel so strongly.

I do support medical interventions for clearly identified problems like sleep disorders, ear infections and problems with diet and bowel movements. But they must be targeted at specific symptoms and they ought to be properly tested first.

I do believe that these kinds of problems aggravate the difficulties faced by autistic people and their families and that they are often dismissed by medical practitioners who ought to know better. In my opinion dealing with these symptoms turns a sick autistic person into a healthy autistic person. It does not cure their autism.

I have not read any research that persuades me that there is an epidemic of a new form of regressive autism caused by vaccines and curable by chelation. Chelation is a drastic intervention that has not been tested and approved for therapeutic use with young children. It is used to treat heavy metal poisoning. It is not a treatment for autism.

I do object to people who prey on parents and offer them false hopes at great price. In one sense we were lucky because our son was not diagnosed until he was 12. At three years old he had ear infections, sleep problems, tantrums and no speech. If we had been introduced to the biomedical movement then, we would have bought it all. Now he is 20 and applying for a degree course at college, done without the benefit of any biomedical intervention.

Just because these interventions were not essential for my son does not mean that I condemn them out of hand. It does mean that I want research to provide evidence based treatments for all the problems associated with autism.

November 30th, 2005 Posted by Mike | National Autistic Society, Quackery, biomedical interventions, chelation, health | no comments