Tag Archives: autistic adults

Polly Tommey poses as advocate for autistic adults

7 Apr

Polly Tommey is in the news again with this piece in the Guardian, Attention-grabbing antics for autism. It concerns her latest poster campaign, timed to coincide with the start of the General Election.
Hello boys polle tommey poster

I have left the following comment.

I have followed Ms Tommey’s attempts to present herself as a mainstream autism advocate for some time now on my blog, Action for Autism, and your headline,”Attention Grabbing Antics” is apt. If Ms Tommey wants us “to move away from the discussion about vaccines because she knows how divisive it is” she could make a start by removing her current Face Book campaign, “Mothers Supporting Andrew Wakefield’s Work.”

Ms Tommey complains about “bickering.” But other organizations have no problem working together. The Autism Act came about with the support of 15 autism organizations working together. Many of their members served on the External Reference Group for the Autism Adult Strategy for England which reported to the government. They mobilized their members to submit over a thousand responses to help shape government strategy. This will be reflected in the statutory guidance that will be published later this year. Ms Tommey’s contribution to all this was nil.

She states that “we haven’t a clue what to do with adults with autism.” That is because she and her supporters have spent the last 10 years arguing that autism is a biomedical disorder of childhood that is treatable with the untested and unproven interventions marketed by her husband. The National Autistic Society has taken a different stance with its Don’t write Me Off campaign Most of us are not interested in what to do with autistic adults. But we we are trying to find out what we can do for them and what they want for themselves.

Don’t Write Me Off

13 Oct

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

Auditing Autism in the UK

9 Jun

The National Audit Office investigates and reports upon the value for money that the British taxpayer gets from our government’s expenditure. They claim to be doing a good job. For every pound the NAO spends it says it saves the government another nine pounds. We will have to take their word for that.

The NAO have recently turned their attention to autism with a report, “Supporting people with autism through adulthood.” In a welcome move towards inclusion the NAO have produced a video illustrating the themes covered in this report and an easy read version as well. To judge from this report it would appear that the high costs to society associated with autism that are claimed by some researchers do not represent the true cost of autism at all. Lifetime costs running into millions of pounds per person and annual costs to the economy in excess of £28 billion a year are sometimes used to argue for drastic measures for prevention and cure. In the past I have questioned the assumptions behind those calculations. But the NAO starts by accepting those figures and then raises some interesting questions.

  1. How much of the expenditure on services is crisis management for individuals who are not provided with a basic level of support? How much would be saved if more cost effective supports were in place that obviated the need for expensive emergency interventions when things go pear shaped?
  2. How much of the existing support represents money well spent and how much is wasted on ineffective strategies that are followed because there is nothing else available?
  3. How many adults are deemed ineligible for services because the criteria are too narrow and do not take account of the need of those with Asperger syndrome or high functioning autism?

They identify two key weaknesses at present. There is a lack of data to inform strategic planning for autism specific services at all levels of government. So three quarters of local authorities do not have a specific commissioning strategy for autistic adults. There is a lack of knowledge and understanding of autism amongst frontline workers. Four out of five family doctors want more guidance in order to give a proper service to people with autism. Two hundred out of five hundred disability employment advisors have had no training in autism.

This last point is crucially important. It is unrealistic to expect autism specific services for every autistic adult. Most people, if they were helped with work and housing, could probably manage quite well most of the time. But when they do need support they should be able to turn to generic services that are autism friendly.

But autism friendly services do not just happen. They have to be part of the government’s strategy, supported by statutory guidance and resources for training. Autism specific services will also be needed. The NAO estimates that it would cost £40 million to provide specialised health and social care teams across the whole of England. But if these services were used to help people into paid employment and other forms of independent living they would actually save money.

  1. They would only have to reach four percent of autistic adults to break even.
  2. Reaching six percent could save £38 million a year.
  3. Reaching eight percent could save £67 million a year.

The NAO report is not just about saving money. It is about spending money effectively. They suggest that even a zero cost saving is OK if what is spent actually delivers improvements for service users. But they also point out that savings can be made by making timely and effective provision available. This report is an important tool in our campaign to influence government strategy during the period of public consultation ahead.

As Mark Lever, NAS chief executive said:

“In the current economic climate the Government cannot possibly ignore the huge potential cost savings and benefits identified by Parliament’s spending watchdog, of providing adults with autism with the right support at the right time. Neither the Government, people with autism nor the taxpayer are getting value for money from existing autism services and support, leaving those affected by the condition feeling isolated, ignored and often at breaking point. This is simply unacceptable.
Real savings will only be made if all Government departments work together to address the gaps in understanding and specialist support, enabling people with autism to lead more independent lives. We are, therefore, calling on the Government to ensure the NAOs critically important findings are reflected in the forthcoming adult autism strategy.”

What I really like about this report is its practical approach. There are no grand schemes, no injunctions to Defeat Autism Now or at least within the next five years. Instead they propose relatively modest changes to the way we plan and organize delivery of key services that take account of the needs of autistic adults. If this report is implemented it should save the government a small amount of money but it will save autistic people from a lot of the unnecessary grief they encounter with the present system.

A better future for autistic adults

29 Apr

Following on from the National Autistic Society’s I Exist campaign and the massive support for the Autism Bill in Parliament the UK Government, after working closely with an external reference group chaired by NAS chief executive, Mark Lever, has launched a

consultation process for the first government strategy to support adults with autistic spectrum conditions (ASC) to live life as full and equal citizens.

The consultation documents can be accessed online at the Department of Health. At present the consultation documents are print only but should be available to complete online before the consultation period ends on September 15th. The consultation only applies to England. The Welsh Assembly Government already has a Strategic Action Plan for Autistic Spectrum Disorders (ASD), published in April 2008. An ASD Strategic Action Plan is being finalised for publication in Northern Ireland and in Scotland the ASD Reference Group has published guidance to local agencies on commissioning services for people with autism. While these separate arrangements may reflect local differences it will be interesting to compare them in order to see how adults are being served across the United Kingdom.

The government has outlined 5 areas of need: social inclusion, health, choice and control, awareness raising and training, and access to training and employment. The NAS has a broader range of concerns on its website which it would like people to consider when completing the government questionnaire.

So, after years of being ignored or ineligible, autistic adults are finally being considered and their views taken into account in formulating statutory guidance for local authorities. So spread the word and mke sure the government hears your views.

Polly Tommey Woo-ing Gordon Brown

15 Apr

Polly Tommey was due to see Prime Minister Gordon Brown today after a successful billboard campaign, costing a reported £500,000, that invited Gordon Brown to meet with her if he wanted to save £508 million pounds. Ms. Tommey’s son is autistic and she is concerned that there is a terrible fall off in provision and support when you transition from school to adult services. She wants the government to invest in autistic people and her message is that appropriate support will save the government money by lifting autistic people out of benefits and into paid employment. As she says in her press release:

“We want better support, we want politicians to engage with us and we want the acknowledgement and support that our children deserve as fully contributing members of society.”

This is all very admirable. But Dr Michael Fitzpatrick has written An Open Letter to Gordon Brown in which he questions how she expects to achieve her aim.

In her campaign posters, Mrs Tommey, whose 12-year-old son Billy is autistic, offers to save the UK government £500 million a year by helping people with autism to get jobs. But it is not clear from the posters how she thinks this can be achieved. However, The Autism File, the magazine she edits, focuses on two issues: supporting the campaign led by the former Royal Free Hospital researcher Andrew Wakefield against the MMR vaccine and promoting ‘unorthodox biomedical’ treatments for children with autism.

The main point that Dr Fitzpatrick makes is that if her message to the prime minister is the same as the one she promotes in The Autism File she would be well advised to think again. He ends thus:

If she wants better provision of diagnostic, supportive and educational services, she might consider adding her energies to the long-running campaigns of the National Autistic Society and others, currently focused on the Autism Bill.

Ms Tommey’s supporters have been quick to respond. At The Age of Autism, Teri Arranga accuses Dr Fitzpatrick of carrying out an inquisition against the Autism Trust and quotes Trust Chairman. Oliver Jones who responded to Dr Fitzpatrick as follows:

I am both shocked and astounded having read your open letter on the Internet this afternoon. How dare you act in such an ill informed manner about a campaign that I and many others have invested significant time and effort in – when you evidently have no idea about what we are actually focused upon.
I find it remarkable that a professional person can take such an aggressive stance as you have done about The Autism Trust’s campaign without having the decency or following proper protocol by making contact with any of the Trustees and specifically myself to determine the objectives and intent of our forthcoming meetings.

The tone of the article is plain. The Autism Trust is trying to improve services and quality of life for autistic people in the UK and Dr Fitzpatrick is misrepresenting their aims and undermining their efforts because he resents Ms Tommey’s support for biomedical interventions. Having read the Autism Trust’s lengthy press release I agree with Dr Fitzpatrick.

“A Personal Campaign”

The press release is clear that this is Ms Tommey’s “personal campaign.” She wishes to speak to Gordon Brown “on behalf of the thousands of mothers of children with autism in the UK.” It repeats that this is “Her campaign” and highlights her role as Editor-in-Chief of The Autism File.

Credibility

Ms Tommey obviously has a lot of business acumen and is an astute campaigner who is adept at using the media to position herself “as one of the leading figures in autism in the UK.” But, as Dr Fitzpatrick points out, her support for discredited notions about MMR and autism and her promotion of unproven treatments do call her credibility into question. This is underlined by errors in the press release. Ms Tommey claims that:

autism numbers have increased dramatically in the last twenty years from 1 in 10,000 in 1988 to 1 in 100 today.

As long ago as 1966 Lotter established a figure of 4 in 10000 for severely autistic children. When Wing and Gould examined the broader autistic spectrum in 1979 they found 20 in 10000. The present figure of 100 in 10000 includes people without significant cognitive impairments who were only added to the diagnostic criteria in 1994.

But Ms Tommey uses these false figures to argue that we face a fresh challenge as for the first time a significant number of adults enter the system. This is a direct contradiction of the NAS I Exist campaign which has successfully persuaded the government that generations of autistic adults have been ignored. The NAS is continuously engaged in discussions with government ministers and officials to get a commitment to action based on the provisions of the Autism Bill which enjoys unprecedented support amongst MPs.

Centres of Excellence

The Centres of Excellence proposed by the Autism Trust seek to provide residential communities in rural locations that provide a “safe haven” for autistic adults. They hope that such centres will provide support for autistic adults in the community, setting up in business or becoming self employed. But most people live in urban settings so it hard to envisage how they will benefit. And despite Mr Jones’ protests it is clear that the Autism Trust is as committed as Ms Tommey is to nonsense cures and treatments. Each centre of excellence will feature a wellness centre offering all manner of quackery including homeopathy, chelation and hyperbaric oxygen therapy, as well as training centre and a conference centre promoting these “biomedical interventions.”

I think that Mr Jones’ complaints against Dr Fitzpatrick are disingenuous. If anything Dr Fitzpatrick should be taken to task for failing to mention the Autism Trust in his open letter. At a time when service providers are moving away from the model of self contained autism communities in favour of closer integration of services within everyday society the Autism Trust proposes to build a worldwide network of such communities.

They expect local authorities to fund places in their residential homes while they are free to develop profitable spin offs promoting quackery. Or, as they describe it in their financial model:

The capital development and business operating model will depend on the facility mix and local partners – as well as the engagement and support available from local and national government. A mix of charitable status and commercially self-standing models will be explored in each location.

Danger

The greatest danger is not that Ms Tommey and the Autism Trust are going to persuade the government to follow their lead. But by muddying the waters with their campaign they may give the government an excuse to back pedal on existing commitments while they consult with this self appointed autism constituency. The best way forward is to get behind the NAS campaign and keep up the pressure for the provisions of the autism bill to become law.

The Autism Epidemic Meme is Behind Almost All Autism Woo: A Call for Additional Research

13 May

After learning former US president Bill Clinton had indicated he believes that “the number of children who are born with autism [is] tripling every 20 years” (hat tip Orac), an understandable reaction might be to point out his ignorance. Understandable, yes, but I think we are looking at a bigger problem than lack of scientific literacy or political pandering in this case; a problem that is going to have to be addressed in a manner that is clear and generally convincing.

A lot of the discussion in the autism community centers around the anti-vaccination movement. It is true that anti-vaccination could potentially become a major problem for the world as a whole, and it is also true that it is a source of stigma for autistics. Some of us have taken it to be our fight, even though it should probably be the CDC’s or the WHO’s fight, if they were not, as it seems, asleep at the wheel. Nevertheless, I think the persistent autism epidemic meme is a much bigger issue as far as the autism community is concerned. Not only is the notion of an epidemic stigmatizing, but it results in ideas that are more than just theoretically harmful to autistics, such as the idea that autistic adults don’t exist. These ideas will be around regardless of the existence of an anti-vaccination movement.

In my regular blog I have discussed the evidence against the notion of an autism epidemic at length. If I may say so myself, I might have even managed to half persuade a few people from the other side of the debate.
What I want to do here, however, is to essentially critique the evidence I’ve discussed thus far. Let me explain why.

Those of us who are immersed in scientific discussions involving autism are well aware, for example, of diagnostic substitution, of an apparently high prevalence of autism in adults, of the changing characteristics of autistics over time, of regional prevalence differences that resemble time-dependent differences, of the stability of cognitive disability as a whole, of the stability (even the decline) of institutionalization rates, of what went on in the past, and so forth. Taken as a whole, this evidence is overwhelming and convincing to someone such as myself who has studied and perseverated on it for years. Fundamentally, though, it is evidence that has a number of problems: It is too numerous, complex, disjoint and most importantly, lacking in precision; none of it is decisive on its own. We are talking about many bits and pieces of evidence that need to be put together and thought through in order to arrive at the conclusion that there is no such thing as an autism epidemic. I don’t expect someone such as Mr. Clinton to be aware of this evidence, understand it, or think through it, much less be able to analyze some of the publicly available data that is not yet available through the scientific literature.

You see, there’s no such thing as an IOM report on the autism “epidemic.” While I’m personally not that fond of basing my beliefs on what authority tells me I should believe, I think a pronouncement by major authorities on the matter would help inform the general public of the state of the debate and the evidence. For this, however, I believe additional research that specifically addresses the matter in a clear way is needed. Allow me to propose some avenues of future research that could potentially answer the remaining questions once and for all. I encourage readers to propose their own ideas.

1) Replicate Lotter (1967). We know that the prevalence of autism as currently defined is relatively high. We also know that the prevalence of autism as defined in the 1960s was relatively low (4.5 in 10,000). What we don’t know is whether the prevalence of autism ascertained using Lotter’s operationalized criteria and methods is still relatively low in 2008. I think it should be feasible to replicate Lotter’s methodology and criteria today and find out the prevalence, not of DSM-IV autism, but of autism as it was thought of in the past. Without meaning to be disrespectful, this should preferably be done while Lorna Wing is still with us. She claims to know which kinds of children Vic Lotter considered autistic and which he didn’t.

2) Determine the prevalence of autism in adults. This one is non-trivial, as there are some ethical issues to consider, but it seems they will attempt it in the UK. I hope it’s not another case of trying to find how many adults are diagnosed with autism or receiving services under an autism category. This wouldn’t teach us anything new and would just be fodder for David Kirby’s blog. I also hope they don’t assume all autistics must be psychiatric patients, for example. They should find a lot of autistics in the general population, and there is evidence they should find many who might not be diagnosable with autism despite meeting criteria, for various technical reasons. Of course, they also need to look in institutions and group homes, since a ready rebuttal will be that “low functioning” autism must therefore be what’s rare in adults.

3) Determine if regional differences in prevalence are real. When you study administrative databases in some detail, one thing that immediately jumps out is that there are huge disparities in the administrative prevalence of autism between certain regions, be it states, regional centers or counties. I have reasons to believe these differences are not real. If these differences are not real, I’d suggest it would be reasonable to hypothesize that time-based differences in administrative autism prevalence are of the same nature. I have suggested, for example, screening children with mental retardation from different regional centers in California to determine, at the very least, if there are real discrepancies in the prevalence of autism within the population with mental retardation. Another question that needs to be answered is why population density correlates so well with administrative prevalence (independently of things like environmental pollution, as I’ve recently found).

4) Explain the changes with a mathematical model. The plausible mechanisms that explain the rise in diagnoses of autism have been discussed at some length. They might include increased awareness, changes in official criteria, an increased availability of specialists, an increased availability of certain services, changes in cultural beliefs, and so on. I have even discussed the internet as a potential driving force behind increased awareness, particularly in the 1990s. But let’s face it, these are all essentially unproven mechanisms. No one has done a multivariate analysis that gives us a coefficient for each variable. Granted, some things are hard to quantify. It would be a lot like trying to quantify word of mouth. But some of this should be doable.