Action For Autism

My response to the Interagency Autism Coordinating Committee

The InterAgency Autism Coordinating Committee is on the last day of its public consultation on the Strategic Plan for Autism, 2010. I just made the cut with my contribution after reading this opening to the Introduction to the Plan.

Two decades ago, autism was a little known, uncommon disorder. Today, with prevalence estimates increasing at an alarming pace, autism is emerging as a national health emergency. Autism is now recognized as a group of syndromes denoted as autism spectrum disorder (ASD). The most recent Centers for Disease Control and Prevention (CDC) prevalence estimates of ASD for children are 1 in 110 (CDC, 2009). These estimates, more than ten-fold higher than two decades ago, raise several urgent questions: Why has there been such an increase in prevalence? What can be done to reverse this alarming trend? How can we improve the outcomes of people already affected, including youth and adults?

This is my response.

As a UK resident may I offer an alternative perspective on autism to the one you present in your introduction? You suggest that there has been an alarming tenfold increase in prevalence since 1990, from 10 in 10000 to 110 in 10000, that constitutes a national health emergency.

Yet as far back as 1996, Lorna Wing[1], writing in the British Medical Journal offered a tentative estimate of 91 in 10000 based on epidemiological studies in Britain[2] and Sweden[3] carried out on children born before 1970 and 1985 respectively.

Wing suggests that broadening the criteria, increased awareness of ASD, particularly as it affects those without cognitive impairments and an increase in referrals for diagnosis may explain the apparent growth in prevalence. Until recently children in the UK with developmental delays were not usually referred for specialist diagnosis. Children were allocated to specialist provision on the basis of their IQ. Local Education Authorities made a virtue out of assessing individual educational need rather than applying labels. The needs of high functioning children in mainstream schools remained unrecognized and unmet. If, as a result, they became disruptive they were treated as maladjusted. In the USA autism has only been an officially notifiable diagnosis within the education system since the early 1990s. It is instructive that while the number of children diagnosed with autism has increased dramatically since 1998 the number of children served by IDEA in US schools has remained between 10 and 11 percent. [4]

This does not rule out the possibility of a real increase but it does suggest that any increase will be far more modest than the 10 fold increase that you suggest. It is unlikely that the USA is facing a massive growth of autism amongst young people sufficient to constitute a “national health emergency.”

The immense costs to society of ASD are often taken to include massive increases in demand for adult services as young people mature. But if there has not been a dramatic increase in numbers it is logical to assume that masses of undiagnosed adults are already amongst us. The first ever study of prevalence amongst adults in the UK [5] suggested that there are around one per cent living in the community. Most of them lacked educational qualifications, were single and not in receipt of services. A previous report by the National Autistic Society, “Ignored or Ineligible”[6] found that most autistic adults, whether high functioning or low functioning had needs that were not being met. Whatever the costs of autism, they are not being substantially borne by a society that ignores the reality for autistic adults. The costs are privatized as familial poverty and deprivation. When adults do take up services it is not to meet their needs as autistic individuals. Rather, they become a burden on psychiatric or custodial services because their autistic needs have not been met.

The need for an expansion of services for autistic adults need not be an economic burden. Again look to the UK. An Audit Commission report[7]) into services for autistic adults found the following.

• We explored the possible impacts of providing specialised health, social care and employment support for adults with high-functioning autism. Wider implementation of such services would require additional expenditure, for example an estimated £40 million per year by Primary Care Trusts and Local Authorities to provide specialised health and social care teams across the whole of England. Evidence from existing specialised services does however indicate that they can improve outcomes for service users, and our model suggests that the costs could over time be outweighed by overall public expenditure savings.
• A key factor would be the proportion of the local population with high-functioning autism identified by specialised services and given appropriate support, for example to live more independently or to obtain and retain employment. We estimate that if such services identified and supported around four per cent or more of the adults with high-functioning autism in their local area, they could become cost-neutral across public spending as a whole over time, as well as resulting in additional earnings and reduced expenses for individuals.
• Increasing the identification rate further could result in greater financial benefits over time. On a number of key assumptions, for example regarding housing settings and employment rates, some of them based on limited data, our model suggests that a six per cent identification rate could lead to potential savings of £38 million per year, and an eight per cent rate to savings of £67 million. Further work is needed to quantify the potential costs and benefits more precisely, and to explore in more detail the potential impacts of implementing such services.

I would suggest taking a step back from the rhetoric about a burgeoning epidemic with dire economic consequences. Instead you should embrace the benefits that accrue from acknowledging the true scale of ASDs in society. You should prioritize efforts to identify autistic adults across the life span and make provision to meet their needs. And, as the National Audit Office report from the UK shows, doing the right thing by autistic people is both fiscally and morally sound. Do the right thing, America.

References:

1. BMJ 1996;312:327-328 (10 February)
2. Wing L, Gould J. Severe impairments of social interaction and associated abnormalities in children: epidemiology and classification. J Autism Dev Disord 1979;9:11-29.
3. Ehlers S, Gillberg C. The epidemiology of Asperger syndrome. A total population study. J Child Psychol Psychiatry 1993;34:1327-50
4. http://www.autismstreet.org/weblog/?p=217#more-217
5. http://www.ic.nhs.uk/pubs/asdpsychiatricmorbidity07
6. http://www.autism.org.uk/en-gb/about-autism/autism-library/magazines-articles-and-reports/reports/our-reports/ignored-or-ineligible.aspx
7. http://www.nao.org.uk/publications/0809/autism.aspx

July 31st, 2010 Posted by Mike | Autism epidemiology, adults, autism advocacy | 6 comments

Help Close Down Judge Rotenberg Center.

June 30th, 2010 Posted by Mike | Judge Rotenberg Center, abuse, autism advocacy | one comment

Don’t Write Me Off

This is the slogan of the latest campaign from the National Autistic Society. It launched today at  a reception in Parliament where over100 MPs heard NAS Council member Thomas Madar talk about his experience as an autistic adult and saw the latest campaign video.

The campaign  addresses the lack of support adults with autism face when looking for a job or trying to access benefits. New NAS research has revealed that, of the adults with autism we surveyed:

· One third are currently without a job or access to benefits

· Over half have spent time with neither a job nor access to benefits, some for over ten years

· Just 15% have a full-time job

· 79% of those on Incapacity Benefit want to work

· 82% who have applied for benefits say that they needed support to apply.

As with previous campaigns these statistics will be brought to life with the personal stories of adults and parents directly affected by these issues. For news, resources and to take part in the campaign  visit the campaign website

October 13th, 2009 Posted by Mike | National Autistic Society, adults, autism advocacy, campaigns | 15 comments

Autism Speaks to confusion within its ranks

Autism Speaks in two minds

The furore over the “I am autism” video commissioned by Autism Speaks is reported online in the New Scientist today. The report links to the video, which is strange because when Alan Griswold sent an open letter protesting about the video to Dr Geraldine Dawson, the chief science officer at Autism Speaks she replied as follows.

Dear Mr. Griswold,

Thank you very much for sending me your letter and telling me about your perspective and feelings regarding the “I Am Autism” video. I understand and respect your perspective and I am truly sorry that the film offended you. The video was not intended to reflect Autism Speaks broader viewpoint or attitude toward persons with autism spectrum disorder. Rather, it was created by two fathers of children with autism – Billy Mann, a Grammy-nominated songwriter, music producer and Autism Speaks board member, and Alfonso Cuarón, an Academy award-nominated film director. It is based on a personal poem written by Mr. Mann. It is an intensely personal expression by these two fathers. It was their hope that the piece would inspire other voices and artists in the autism community. It has greatly offended some people, however, and we have removed it from our website.(emphasis added)

Again, thank you for writing to me and sharing your thoughts. You can rest assured that I will continue to advocate for a respectful and compassionate attitude and support for persons with autism spectrum disorder.

Sincerely,

Geri Dawson

While it is true that the page containing the video is an orphan page and the revised press release does not contain the video, it is still up on the Autism Speaks official You Tube video channel. and the revised press release still refers to the film as follows.

Academy Award-nominated director Alfonso Cuarón and Grammy-nominated songwriter/producer Billy Mann unveiled a video they created especially for this event, called “I Am Autism.” The powerful short film combines footage of individuals with autism and their families from around the world with a poem written by Mr. Mann read by a multitude of voices to show the global face of autism.

So, what is it to be? Is it An intensely personal expression by these two fathers, or the global face of autism?

Marc Sirkin, chief community officer at Autism Speaks who was interviewed by New Scientist does little to resolve this contradiction. According to him,

the film is “a personal statement based on the viewpoint of the two parents who created the film”.

Two parents? Alongside the video on the Autism Speaks video channel is another from AS co-founder Suzanne Wright. We are invited to

Watch Autism Speaks Co-founder Suzanne Wright deliver a personal message asking supporters to help create the film “I am Autism”

On September 22, 2009, First Ladies and dignitaries from around the world will attend Autism Speaks’ Second Annual United Nations World Focus on Autism. At this meeting, Academy Award-nominated director Alfonso Cuarón and Grammy-nominated songwriter/producer Billy Mann will unveil their video “I am Autism.”

Alfonso and Billy need your help to create this unique film – send us video footage of people from around the world who are on the autism spectrum. The footage will underscore the gravity of this global health crisis, and inform those in a position to effect a change. Alfonso and Billy are looking for footage of people of all ages, all socioeconomic backgrounds and all ethnicities.

The film was being promoted at the highest levels within Autism Speaks. One of the film makers, Billy Mann, is a board member of Autism Speaks. Autism Speaks organized the collection of parents’ videotapes and handled all the necessary legal stuff like disclaimers and permissions. They chose to launch it at a high profile event at the United Nations and it formed the centrepiece of their original press release for the event. It is still on their website and their video channel.

I think it is reasonable to assume that if the film had received universal acclaim rather than the widespread criticism that was sufficient to propel the controversy into the mainstream media, Autism Speaks would have taken the credit instead of back pedalling and trying to present the film as a personal statement by two fathers that had nothing to do with them.

Autism Speaks’ revealing remarks

Marc Sirkin defended the video in these terms.

“We have received both positive and negative feedback. Some parents have found the video inspiring and have thanked us for showing it. Others have been offended by it. We believe that all perspectives are valid and need to be heard and respected. No one perspective can ever be the definitive voice of autism.”

It seems to me that he is referring to parental responses here and ignoring the fact that most of the protests have been organized by autistic self advocates. The online response mostly articulates the views of these same autistic self advocates. This parent centred viewpoint is reflected in the statement that “all perspectives are valid and need to be heard and respected.”

Really? Even those that have been discounted after thorough investigation and research?; Refrigerator mothers anybody? How about holding therapy or packing? That one is still going on in France supported by psychoanalytical perspectives on autism. How about exorcism?

Clearly not all perspectives are valid or deserving of respect. But Autism Speaks has always been an uneasy alliance of two perspectives; the mainstream scientific consensus that autism is a brain disorder of genetic origin and the popular belief that it is primarily a whole body disease with environmental causes. The former perspective suggests a strategy of genetic research aimed at prevention and cure. The latter wants research into toxins and biomedical cures. It has become increasingly anti-vaccine and anti-science. Both exist within Autism Speaks in an uneasy alliance in which both perspectives are valid.

The one perspective that is not represented within Autism Speaks is that proposed by autistic self advocates, namely that the most disabling aspects of autism are social in origin. The problem is understanding. If we make the effort to understand autism and provide appropriate support at a community level autistic people would stand more chance of making their way in the world without having to face stigma and prejudice. Will Autism Speaks ever accept that view as “valid and need[ing] to be heard and respected?” When can we expect to see videos from autistics and their allies being presented by Autism Speaks?

September 30th, 2009 Posted by Mike | Autism Speaks, autism advocacy, parents | 28 comments

Nothing About Us Without Us

Nothing About Us Without Us 

This familiar slogan from the disability rights movement is being raised increasingly by autistic rights activists.  Autistic people have a history of self-organization in groups like Autism Network International (ANI), Autistic Self Advocacy Network(ASAN), and more recently the London Autism Rights Movement.  While the Internet has made it easier for individuals to connect both locally and on a wider scale autistic people also come together in the physical world. Autreat has seen a regular gathering of autistic people and their allies since it was launched by ANI in 1996 and, for those unable to make the trip to America, a group of autistic people based in the UK launched Autscape in 2005. Alongside these annual events there are numerous local groupings with activities ranging from social gatherings to serious campaigning.

When you combine physical presence with a wired community the results can be impressive.  Two years ago the NYU Child Study Centre launched the now infamous “Ransom Notes” poster campaign. It promoted the idea that autism along with other neurological disorders was kidnapping our children. Bloggers responded with outrage. ASAN stepped in to coordinate the protests. 22 disability organizations from around the world joined the protest and NYU dropped the campaign.

Earlier this year Action for Children ran a TV advertising campaign that presented autism as a monster that trapped children. The blogosphere was again quick to respond. A parent launched a Face Book campaign which soon attracted a thousand followers, one of whom enlisted the support of Tony Attwood, and organized complaints to the Advertising Standards Council. Action for Children stood by their campaign, which nevertheless ended a week ahead of schedule.

Mention of Tony Attwood reminds me that he is at present on the receiving end of a campaign by ASAN who have launched an online petition to express their opposition to his continuing association with Families of Adults Affected by Asperger’s Syndrome (FAAAS) which has moderated its name (it used to be known as Families of Adults Afflicted with Asperger’s Syndrome) if not its stance that wives and children are the victims of men who use their Asperger Syndrome as an excuse for unreasonable behaviour towards their families. 

In this case I am not so certain that public protest is the way forward. It is one thing to use the politics of protest to confront high profile images and messages that damage the public perception of the autistic community. It is quite another to demand that someone change their mind based on public opinion. That requires debate and discussion. I agree with ASAN that Tony Attwood ought to disassociate himself from FAAAS and their use of his name on their website. How we go about it is a question of tactics not principles 

This brings me to my final point. How can autistic self advocates position themselves to influence decisions before they are taken instead of having to protest about the consequences of those decisions taken without them? And, bearing in mind the well documented difficulties that autistic people have navigating the nuanced world of social communication, what can we do to help them? Maybe it is they who can help us. Autistic plain speaking could cut through the doublespeak that bedevils the political process.

In the USA the Inter-Agency Autism Coordinating Committee (IACC) that advises federal agencies like the National Institutes for Health (NIH) on priorities for autism research invited members of ASAN onto the committee and took account of their representations. ASAN have also had meetings with the relevant advisors in President Obama’s policy teams.

Things are happening in the UK as well. Parliamentary support for the Autism Bill led to the government setting up an external reference group chaired by National Autistic Society (NAS) chief executive, Mark Lever. The vice chair was autistic adult, Anya Ustaszewski. The input of the autistic adults on the group has helped to shape the public consultation launched by the government that will lead to statutory guidance for local authorities on meeting the needs of adults on the spectrum.

The NAS has come a long way in transforming itself from a parent led group to one that takes autistic adults seriously. A number have been elected to the NAS Council and one serves as a member of the board of trustees. But there is still a lot to do. Even quite able autistic adults can be excluded because they cannot cope with big meetings or face to face negotiations in committees. For others, their difficulties with communication make it hard for them to get their message across. And those with additional learning difficulties are even more disadvantaged. 

The good thing is that autistic people are demanding to be heard. Governments, along with other public bodies and autism charities have declared a willingness to listen. No doubt there will be future improvements to the wired world that will help the process. But people have to be willing to create those opportunities. We could start by taking seriously the slogan with which I began this article.

Nothing About Us Without Us.

May 10th, 2009 Posted by Mike | adults, autism advocacy, politics | 32 comments

OPEN YOUR EYES TO AUTISM - London Rally

There was a protest march in London on Saturday. I am not talking about the tens of thousands who were protesting over the economic recession in advance of Wednesday’s G20 Summit in London. There was another march that day protesting about autism. I did not attend, but from the photos posted online it looks like a few hundred parents, children and their supporters turned up to march from the Embankment to a rally in Trafalgar Square.
The march was called by Open Your Eyes to Autism, “a parent’s initiative” that has strong links with The Autism File. This is a magazine founded by Polly and Jonathon Tommey to promote biological interventions for autism, especially dietary ones. They were the first parents in the UK to try secretin on their child. I once shared a platform with Jonathon Tommey at a conference for health care professionals. Lisa Blakemore-Brown was also there and spoke about the use of Munchausen’s by Proxy to discredit parents who insisted on biomedical treatments for their autistic children. I felt at the time that both had valid insights, but these were insufficient to support the weight of their arguments.
Still, it made for an interesting conference in which medical professionals, attending as part of their continuing professional development, were exposed to the alternative views promoted by Tommey and Blakemore-Brown alongside more orthodox speakers. My contribution was an early attempt to promote the idea that health care professionals can make a positive contribution to the support of autistic people and their families if they start out by accepting the autistic person instead of trying to cure them. You can read it here.
So I was interested to see that despite its biomedical, anti-vaccine sympathies the march on Saturday also welcomed representatives of the London Autistic Rights Movement, including Hub blogger Casdok who attended with her adult son and a placard that read “Acceptance Not Cure.”
This may be because the march seemed to offer something for everybody. Its flyer called for

Improving services for autistic children and adults.
Recognition of the endemic nature of autism worldwide.
Better educational services.
Valid Research to establish cause.
More support for autistic adults.
More help with the transition from child to adult:
Support for Dietary interventions on the NHS.
Recognition of the role of environmental triggers in ASDs.
And much more…

In this the march resembled its larger counterpart on the day. Both were coalitions who could agree upon some issues and disagree about others. The key questions yet to be answered are, “Should we try to build a coalition in which the points of agreement outweigh the points of disagreement? If the divide is too great can we at least maintain a constructive dialogue while pursuing our distinct agendas?” I am open to suggestions on both questions.

March 30th, 2009 Posted by Mike | autism acceptance, autism advocacy, campaigns, politics | 9 comments

Action for Children reply to critics

Like many of you I wrote to Gary Day at Action for Children about the Story of Dan ad campaign. Because some of you had already shared your replies  I pointed out that I was not interested in their stock response. So they replied with … a stock response. My letter first

Dear Mr Day,
I am writing to express my concerns about the campaign materials featuring Dan, a young man with Aspergers Syndrome. I know from your reply to my colleague Harry Williams that you feel justified in using Dan’s words and drawings to illustrate his difficulties. But in so doing you are reinforcing stereotypical attitudes to autism that are damaging in the extreme.

Dan has learned to see his autism as a monster that consumed him and caused him to behave in unacceptable ways. It is his fault he reacts badly to people who bully and tease him. It is the autism to blame for him being sent away to school. The staff taught him to correct the error of his ways and thanks to them he is a better person.

This may be how Dan sees the situation but the TV ad suggests that this is how Action For Children see it as well. And this is the message that is going out to the general public. Autism makes children behave badly. It is a monster that is taking our children. Action for Children will help your child to trample its autism under foot and become a better person. That is the message that autistic adults and the parents of autistic children are taking from your advert and we reject it utterly.

When I visited your website I was perturbed to read “”Today Headlands – as it is now known – is a very special place. It is a residential and day school for children with emotional and behavioural difficulties, like autism.” I have been a teacher in special education for 25 years. I can assure you that children with emotional and behavioural difficulties and autistic children are different. The former have had damaging life experiences that cause their problems. The latter are born with a neurological difference that affects the way they process information.

Then I went to “Meet Dan.”

Slide 2 reveals very low self esteem.
“I was loud and obnoxious and generally bad tempered”

Slide 3 describes his fear.
“I was just afraid of what was out there, afraid one day that I’d leave my parents and not be able to survive or anything like that.”

Slide 4 has more self loathing
“I wasn’t a great brother or son.”

Slide 5 The transition to Headlands was not well managed.
“I felt hurt. I felt betrayed by being left there.”

Slide 6 Dan was really miserable.
“I thought no-one really cared. I sat alone in my room alone and just … I was really upset.”

Slide 7 The misery continues
“after a few months, a year of being there I got a bit steadier.” A year?!

Slide 8 Things get better when Dan learns that his problems are his lack of respect and his lack of honesty.
“People have said that Dan you are a lot more respectful, you have been  a lot more honest and people have given me their trust.”

Slide 9 Dan expresses his gratitude to his carers and teacher.

Slide 10 Dan expresses his new found confidence, describes his skills and his sense of peace.

For all I know you have done a great job with Dan. You have taught him that because he is autistic he sees the world differently from the neurotypical majority; that their lack of understanding is the root of his problems. But by understanding himself and learning to make allowances for their lack of understanding he can avoid unnecessary confrontations. You have boosted his self esteem by identifying his strengths and giving him success. This gives him a secure base from which to tackle the real problems that he has and also gives him confidence to face the future.

But the evidence of your campaign suggests that you have taken a desperately unhappy, fearful child and taught him that all his problems were internal to himself and that it is up to him to change. Compliance brings its own reward. This may not be your intention, but it is what many of us in the autism community are taking from your campaign.

I note that you have invited people to express their concerns by complaining to the Advertising Standards Authority. I have no interest in seeing a dodgy advert pulled if the attitudes that inform that campaign and, presumably, inform the practise of Action for Children in relation to the care and education of autistic children, continue unchanged. I would much prefer to contibute to a dialogue that contributes to a better understanding of the needs of autistic people.

I am, as previously mentioned, a special needs teacher of 25  years experience. I teach in an all age school for pupils with severe learning difficulties. For 23 years I have parented a son with Aspergers syndrom. I am active in the National Autistic Society. I write and speak on autism and maintain a blog, Action for Autism, which is accessible via my sig file below.

Their stock response

January 29th, 2009 Posted by Mike | Autism rights, autism advocacy, campaigns, ethics | 13 comments

Genetic test for autism - how close is “close?”

This morning’s Today Progamme on BBC Radio 4 carries a short segment on the possibility of a prenatal test for autism. This was prompted by an article by Professor Simon Baron-Cohen on the BBC website which raised concerns about the possible negative consequences of prenatal testing.

Baron-Cohen is a proponent of the male brain theory of autism. This is based on two key concepts. First, in his book, The Essential Difference, Baron-Cohen puts forward the argument that men tend to be more capable when dealing with objects and relationships between objects. They are systemizers. Women tend to be more capable when dealing with people and relationships between people. They are empathizers. Baron-Cohen proposes that this is the result of differences in the structure and organization of male and female brains that is related to differential exposure to testosterone in the womb.

Secondly, it can be argued that autism is a manifestation of the extreme male brain. This seems to fit the picture of object oriented autistics who struggle with social skills  but are able mathematicians and engineers. Baron-Cohen is open to the idea that this is an inherited genetic tendency. See for example his theory of assortative mating. But he also claims to have found

a link between higher levels of the male hormone testosterone in the amniotic fluid surrounding a foetus and autistic traits when the child was eight.

And animal studies have shown foetal testosterone levels influence brain development, masculinising it.

Baron-Cohen’s theories raise as many questions as they do answers and have attracted both supporters and critics within academia and the autism community. But Baron-Cohen has started this debate, not to promote his theories, but to consider the ethical implications, if they are correct, for future pre-natal testing for autism. What if there is a connection between the genes for autism and the genes for mathematics?

If it was used to ‘prevent’ autism, with doctors advising mothers to consider termination of the pregnancy if their baby tested ‘positive’, what else would be lost in reducing the number of children born with autism? Would we also reduce the number of future great mathematicians, for example?

Of course pre-natal testing need not lead to abortion. We could use drugs to regulate the level of testosterone in the womb. But Baron-Cohen warns

If reducing the testosterone in a foetus helped that baby’s future social development, we would all be delighted. But what if such a treatment reduced that baby’s future ability to attend to details, and to understand systematic information like maths?

Caution is needed before scientists embrace prenatal testing so that we do not inadvertently repeat the history of eugenics or inadvertently ‘cure’ not just autism but the associated talents that are not in need of treatment.

While it would be unfair to judge Baron-Cohen’s position on the evidence of an opinion piece that was written with the express intention of provoking a debate, this article did set a few alarm bells ringing, if only because it was an uncomfortable reminder of my own position in the not so distant past. There are strong echoes of the arguments that were explored in Elizabeth Moon’s novel, The Speed of Dark. In a not so distant future pre-natal testing has all but eliminated autism from the planet. There are still autistic adults who enjoy a relatively privileged, if somewhat restricted existence working for a corporation that exploits their systemizing skills while making accommodations for their autism. A central question in the book revolves around the company’s quest to find a cure that will do away with the need for these expensive accommodations while preserving the systemizing talents of its workforce. If you have not read it I can recommend it. But be warned. Some autistic people cried when they read the ending.

It seems to me that Baron-Cohen comes close to suggesting that we should only cure autism if we can be sure of preserving its “associated talents.” And the other side of that argument is that we should preserve autistics because of their value to society and not because of their intrinsic worth as human beings. I may be doing Baron-Cohen an injustice here. He does refer to the greater danger of eugenics as well.

It is significant that in the radio interview it is the interviewer who raises the eugenic issue, chiding Baron-Cohen for offering a utilitarian rather than an ethical opposition to genetic testing and Baron-Cohen agrees with him. He is at pains to emphasize that even though pre-natal tests may be 5 years away the moral and ethical dimensions are complex and a debate needs to take place now and not be hurried through when the medical technology is a done deed.

In that context the Today Programme made an interesting choice of protagonist to balance Baron-Cohen’s point of view. Professor Joy Delhanty of University college may be familiar to some readers. I blogged about her attempt to offer pre-implantatation genetic diagnosis to parents at risk of having another autistic child. Lacking a genetic test for autism, she proposed to screen for gender and only implant female embryos that were statistically less likely to be autistic. This was not mentioned today. But she did suggest that Baron-Cohen’s fear that a pre-natal test would be used to screen all autistic traits out of the population was misplaced. She insisted that pe-natal testing would only be offered to people who were already significantly at risk of having another autistic child or to family members with a strong genetic risk. The implicit assumption was that only severely autistic traits would be screened out and talented aspies would continue to be born and that this need not concern medical ethicists. Baron-Cohen did not sound convinced.

I know that some people have questioned Baron-Cohen’s judgement in raising this issue when there is no immediate pressing concern.  But Delhanty’s misapprehension of the complexity of the issues surrounding autism, alongside her enthusiasm to implement the latest developments in genetics without regard for the broader societal implications suggests that Baron-Cohen may well have done us all a service by raising this issue now.

Further reading

The discussion of Baron-Cohen’s original piece for the BBC is here. It repays careful reading. The comments perfectly illustrate the subtleties of this question and it is heartening that so many parents and autistic adults are  able to express these subtleties so cogently.

NAS Media Response

Blogs

Kristina Chew at Autism Change

At the Rim

Cat in a Dog’s World (added Jan 8th at 2.15pm)

January 8th, 2009 Posted by Mike | autism advocacy, genetic testing | 25 comments

Obama ignores anti-vaccine agenda

I had just finished reading Kristina Chew’s piece, When a Real Crisis Hits, when this news item caught my attention. Jim Carrey is setting up a $50 million trust fund for his partner, Jenny McCarthy and her autistic son, Evan. Carrey’s daughter will inherit the rest of his $200 million dollar fortune.

While I am pleased that Evan is one autistic child who will not be badly affected by the credit crunch I am a little confused. Last year all the news was that Jenny had recovered her son from autism. Now he is described as still being autistic. Last year Jenny described him as recovered from autism but still needing treatment for seizures. The year before she told People Magazine that Evan’s seizures were not epilepsy but a part of his autism.

This would not matter if McCarthy was just another celebrity mother making contradictory statements about bringing up her child. But she is also an advocate for the belief that vaccines cause autism and her celebrity status gives her ready access to the media. Together with Carrey she is on the board of the anti vaccine organization, Generation Rescue and her supporters are trying to drum up support for a meeting with Barack Obama’s team prior to his inauguration. It looks like Obama’s transition team have already done autism and no anti-vaccine advocates were invited. But the Autism Self Advocacy Network were invited, which is good news for the autism community.

January 4th, 2009 Posted by Mike | autism advocacy, politics | 2 comments

an autism friendly blog for change.

2009 promises to be an important year for us all. The state of the world economy is going to exert pressure on publicly funded services as well as those supported by charities and other not for profit organizations. If we are lucky we will not see a major reduction in autism specific services. But we cannot reasonably expect to see an expansion. Most autistic people and their families will continue to rely on generic services and these too will be subject to downward pressure on their budgets.

One low cost option that can make an enormous difference is the move to make generic services autism friendly. If service providers are made aware of the kind of accommodations that can make life easier for autistic people and their families and their staff have some basic autism awareness training it can make a world of difference.

With emergency services like fire, police and ambulance this has long been the case. Dennis Debbaudt has pioneered the provision of training for first responders. The National Autistic Society is supporting similar schemes in the UK. The appointment of a person with specific responsibility for autism within the Department of Health and the publication of new social care guidelines are welcome initiatives.

Public perceptions of autism are also important. Doom laden campaigns with the message that autism is a mysterious kidnapper of children are not only misleading but also create barriers. If we cannot understand something, or are told that it is beyond our understanding we are more likely to turn away. Scare stories about the cost to society of the “autism epidemic” are also likely to backfire. People are already scared of losing their jobs, their homes, their life savings. Trying to scare them into doing something about autism is a dangerous strategy at the best of times and these are most definitely not the best of times.

Although it is not without its critics, the ongoing NAS campaign to Think Differently About Autism has tried to avoid these pitfalls by being honest about the problems that can come with an autistic spectrum disorder and being positive about what people can do to help. Now Change.org an American social enterprise site promises to do something similar with its new autism blog.

What I really like about this blog is the decision to appoint two editors. Kristina Chew is the mother of a severely autistic child. Dora Raymaker is an autistic adult. She is Co-director of the Academic Autistic Spectrum Partnership in Research and Education and a member of the Autistic Self Advocacy Network’s Board of Directors.

In one of her entries Kristina charts her journey through autism from being a dedicated seeker of cures and recovery to her present situation of accepting her son’s autism. Here is a sample.

Once upon a time, I tried to recover my son from autism, through educational therapies and biomedical treatments. As he’s gotten older, I’ve come to think that focusing on recovery distracted me from truly helping Charlie and truly understanding Charlie. It’s Charlie’s education that is our main priority as we prepare him for his future, and especially an education that takes into account Charlie’s learning style, his tremendous struggles in many areas, and his strengths.

In one of her entries about a talented artist with autism Dora writes

How can we change to world so that instead of just aspiring to get Bula “a job working at a local gallery, cleaning and taking care of the art supplies,” we instead aspire to give Bula a chance to succeed as a working artist doing what he loves, and being treated with the respect that anyone with his talents deserves?

This is definitely one for the blog roll. Read and enjoy.

January 4th, 2009 Posted by Mike | autism acceptance, autism advocacy | 4 comments