Wakefield’s false claims backfire

6 Jul

Last week Andrew Wakefield announced to the world that the Press Complaints Commission (PCC) had ordered the Sunday Times to take down some articles about him from its website. Wakefield suggested that this was a tacit admission by the Times that its story was inaccurate and this message was dutifully repeated by Age of Autism and the rest of Wakefield’s online supporters.

As I reported previously, the PCC is waiting on the final outcome of the GMC disciplinary hearing against Wakefield before conducting its own inquiry over the articles and felt it would be fairer all round if the material was temporarily removed from the Times website. The Times agreed and removed the articles as a courtesy to the PCC. The Times was not impressed by Wakefield’s ungracious response and as a result the material is now back on their website.

This is not the first time that Wakefield’s actions have backfired on him. Four years ago he tried to sue Channel 4 and Brian Deer for libel over a documentary, MMR: What they didn’t tell you, that contained damaging revelations about Wakefield’s role in the MMR scare. As with his current complaint to the PCC and his recent press release, Wakefield’s action in bringing the case seems to have been motivated by a desire to please his loyal supporters rather than a serious attempt to settle the issue. Unusually for a litigant, Wakefield showed a marked reluctance to clear his name in court, seeking to delay the hearings for two years. When the court decided that Deer and his legal team were entitled to see the unredacted medical records of the children who were the subjects of Wakefield’s original Lancet paper Wakefield withdrew the action and agreed to pay costs to Brian Deer.

It is ironic that without the libel action by Wakefield it is unlikely that Deer would have been granted access to the medical records. And without the records he would not have sat through months of the GMC and so written the story that Wakefield is now complaining about.

According to Brian Deer (private communication, quoted with permission)

There’s also the irony that it was Wakefield who in February 2004 called for a GMC investigation into my allegations that he had a conflict of interest over his research for lawyers, and no proper ethical cover, prompting me to hand over all my materials to the GMC’s lawyers, producing the longest doctor’s discplinary hearing ever.

I understand that the Press Complaints Commission has written to Dr Wakefield about the claims on his website, and he’s now in a tricky position. Either he admits that was he says is untrue, and takes down his claims, or he leaves them up in circumstances which would then be both dishonest and actionable.

I expect Wakefield to withdraw his complaint to the PCC once the GMC deliver their verdict. He will claim that it is impossible for him to get a fair hearing in the UK. It may suit him to continue to play the martyr from his self-imposed exile in America while enjoying the adulation that befits a “brave maverick doctor.” But he is and will remain the author of his own misfortune.

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Ritalin and the Health Ranger

5 Jul

According to the Natural News Network they “focus on providing empowering content for intelligent readers.” A recent example is a report on research into potential dangers from ritalin and similar stimulants that are prescribed to an increasing number of children and adolescents for the treatment of ADHD. According to the American Journal of Psychiatry an estimated 2.5 million children and teens in the USA are taking these drugs and their use amongst adults is increasing. So it is important to assess their safety.

Whatever their intelligence, readers are unlikely to feel empowered after reading Mike Adams’ (aka the Health Ranger) recent article for Natural News Network, “Ritalin ADHD Drug Linked to 500 Percent Increased Risk of Sudden Death in Children.”

He tells us that

According to scientific research funded by the FDA and the National Institute of Mental Health, drugs such as Ritalin increase the risk of sudden death by five hundred percent among children and teens

And that is all he tells us. There is nothing else about the research in the article, not even a reference or a web link to the research. We are told that according to other research (again no references are provided) “ADHD drugs stunt the physical growth of children while impairing brain development.”

Then we get the usual tirade about ADHD being a fictitious disease, invented by the drug companies in order to boost profits from drug sales. And of course they are in cahoots with the FDA and the psychiatric profession. This wholesale chemical poisoning of our children in the name of profit is, of course, a holocaust and children are dying day by day while the mainstream media remains silent.

The media are so compromised that our trusty Lone Ranger had to use all his ranger skills to unearth this story. Well no. Actually he set up a Google news alert and read it in the Washington Post and on ABC News. So much for the media conspiracy of silence.

Of course he had to rely on the media because the drug companies are busy supressing negative research and hiding it away in obscure journals aided and abetted by “Corrupt, dishonest psych doctors “ Except that the paper is published in the American Journal of Psychiatry and it is open access so anyone can read it for free.

This conspiracy of silence seems even more unlikely when you read that the study was supported in part by a contract from the Food and Drug Administration and a grant from NIMH (R01-MH56250) and many of the study’sauthors have received funding from drug companies.

Dr. Walsh has received research support from AstraZeneca. Dr. Duan has received research support from Pfizer. Dr. Olfson has received research funding from Eli Lilly and AstraZeneca and has worked as a consultant for AstraZeneca and Pfizer and as a speaker for Janssen. Dr. Greenhill has received research support from Johnson & Johnson, Otsuka, and Forest. The remaining authors report no competing interests.

The study did something very simple.

Mortality data from 1985–1996 state vital statistics were used to identify 564 cases of sudden death occurring at ages 7 through 19 years across the United States along with a matched group of 564 young people who died as passengers in motor vehicle traffic accidents. The primary exposure measure was the presence of amphetamine, dextroamphetamine, methamphetamine, or methylphenidate according to informant reports or as noted in medical examiner records, toxicology results, or death certificates.

So the research team compared deaths in traffic accidents, on the assumption that children’s medication status would have little bearing on survival rates in such circumstances, with other instances of sudden death. They found that the rate of methylphenidate usage for unexplained sudden deaths was five times more than for deaths in road accidents. So does this mean that Ritalin will make your child five times more likely to die unexpectedly than a child who is not taking Ritalin?

Not exactly. The study did find a clear difference in rates of medication between the two groups and subsequent statistical analysis indicated that this difference was significant and not just an artefact. But what does it signify?

Around 4% of American children are currently taking prescribed medications like Ritalin for ADHD. So you would expect that if Ritalin was not a factor in sudden deaths amongst children, we could expect to find around 4% of such children on Ritalin or similar medications. That works out at around 45 children or 22/23 in each group. In fact they only found 12 children on such medications – 10 in the sudden death group and 2 of the victims of traffic accidents.

Rather than Ritalin increasing the likelihood of sudden death, it is plausible to argue from these figures that Ritalin protects against sudden death. Instead of an expected figure of 22/23 Ritalin users they found only 10. and for traffic accidents the figure is even more dramatic – 2 instead of 22/23.

The authors point to all sorts of reasons why their results hould treated with caution: the small sample size; recall bias amongst parents; the rarity of sudden unexplained deaths in children; even the idea that Ritalin protects against sudden death by making children less likely to engage in potentially life threatening actiivities.

If our intrepid health ranger had read the study he would have known this. He would have also known that he has completely misrepresented its findings. Actually, if he had only read the press reports that he links to, he would have known that he has completely misrepresented its findings. I think he does know this and has deliberately misrepresented this study. Either that or he is the victim of his own conspiracy theoryand is totally impervious to any evidence that contradicts his preconceptions.

Whatever the case may be, anyone studying at the University of Google is more likely to get a D minus than a PhD if they rely on the Health Ranger and Natural News for their information. Though to be fair he does do a nice line in organic hair care products from The Valley of Longevity and he will even help you to buy real estate in the actual Valley in southern Ecuador.

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Wakefield, distortion and the Sunday Times

3 Jul

The journalist Brian Deer has done as much as anyone to investigate the background to what Ben Goldacre describes as the MMR Hoax. In the course of his investigations he discovered undisclosed conflicts of interest by Andrew Wakefield that led to most of the authors of the original paper in the Lancet withdrawing their names and the editor publishing a retraction.

Then in February this year Deer published his latest investigation. The Lancet paper had already been dismissed as bad science. Now, if Deer’s findings were correct, it would seem that some of the data had been deliberately falsified. Wakefield responded by complaining about the article to the Press Complaints Commission. The Times stood by its story and also forwarded all details to the General Medical Council who are still investigating Wakefield over allegations of misconduct.

And that was it until this week, when Thoughtful House, the clinic that Wakefield has established in Texas, issued a press release announcing

Press Complaints Commission Orders Sunday Times to Remove MMR journalist’s Stories on Dr. Wakefield from Paper’s Web Site

It goes on to suggest that this “interim order”

appears to indicate there are questions about the accuracy of the Deer stories.

Of course it does no such thing. Thoughtful House even quote Stephen Abell of the PCC as saying that

Given the ongoing nature of the dispute the articles should be removed from the newspaper’s website until this matter has been concluded. This would not be an admission of any liability on the part of the newspaper.

The wording reveals what actually happened. The Sunday Times has not been ordered to take down the articles. The PCC decided to postpone its investigation until after the GMC reaches a decision on the allegations of misconduct. This makes sense. If Wakefield is found guilty the complaint will fail. Meanwhile the PCC has asked the Sunday Times to remove the article from its website until matters can be resolved and the Sunday Times has agreed. That tallies with the email I received from the PCC

The PCC has considered the matter initially and has elected to stay its investigation until the conclusion of the GMC inquiry. It has reached no formal decision on the substance of the complaint and there is no published ruling on our website.

The Commission has asked that the paper remove the articles temporarily until the conclusion of the PCC investigation. This is without any admission of liability on the paper’s part.

So no order was issued, no judgement was made and there is no suggestion of impropriety by Deer or the Sunday Times. All the suggestions come from one source, Wakefield himself. His friends on the web may try to pretend that this is further proof of the brave maverick doctor’s innocence in the face of a vicious campaign against him. I think they are clutching at straws.

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Time for a cordon sanitaire?

28 Jun

The politics of autism are enmeshed in the debate about vaccine safety over the past ten years, and will take years to be disentangled. In the UK things might be changing, but in the US high profile celebrities have given a late push to fears that by now should be consigned to history. The BMJ have run a feature piece on the “Vaccine Disputes” currently running, focusing on both the UK and US experience. Here are some points made about the UK’s anti-vaccine movements, that both highlight the problems these groups pose for vaccination policies and autism, and their weaknesses.

One of the main drivers of the safety fears are antivaccine groups. Prominent among the UK groups is Warrington based JABS, whose website still maintains that “some children have and will continue to be damaged by combined and single dose vaccines.” Founder Jackie Fletcher has a son with epilepsy and brain damage, which she blames on the MMR vaccine. Her views are widely quoted by the mainstream media.

Another group is the One Click Group, whose tactic is to circulate by email a digest of antivaccination press cuttings, “Mother wants answers as baby dies from vaccine,” is one recent headline taken from a local paper in Trinidad and Tobago. The group has emailed several members of BMJ staff, all of whom found themselves unable to unsubscribe from the unsolicited email. The group, run by a former public relations worker, Jane Bryant, is especially uncompromising in its message. Ms Bryant first came to prominence campaigning to get chronic fatigue syndrome treated as a medical condition.

[…]

Pru Hobson-West, a senior research fellow at the Centre for Applied Bioethics, University of Nottingham, has identified and studied 19 groups in the UK that are critical of vaccinations.5 They included Action against Autism in Glasgow and the London based vaccination.co.uk. She found the groups were all relatively small and led by one or two parents, with a membership base ranging from 60 to 2000.

Ms Hobson-West discovered the more radical groups didn’t necessarily have personal experience of vaccine damage but were often seasoned campaigners for causes such as alternative health and animal testing.

Pru-Hobson-West’s comments ring perfectly true. The same names tend to reappear like weeds in pavement slabs, and a degree of cross-over of key individuals between organisations seems apparent. What we have are highly motivated axe-grinders, some of whom may be motivated because they feel they have genuine grievances. Some, however, are complete crackpots with no stake in either vaccine safety or autism, apart from slightly unhinged views on a variety of subjects. These lead them to take an anti-vaccine stance. So, we have alternative health practitioners with a ideological opposition to vaccines, obsessional individuals who think Roy Meadows is part of a huge establishment conspiracy, and the author of a website that believes vaccines are part of a genocidal plan, while at the same time promoting holocaust denial material. The One Click Group has even resorted to homophobic arguments. These are not people to be taken seriously. In fact, these are people to studiously avoid. Any autism organisation would do well to throw up a cordon sanitairearound such parties and their associates. Here’s how they treat individuals.

David Salisbury, director of immunisation at the Department of Health, says he has received threats at home and at work from activists. He says the “degree of anger” seems similar to that of animal rights activists. “One GP who used to be connected to JABS recommended that capital punishment was appropriate for me. Why should I accept it? This degree of personalisation.”

Neither Generation Rescue nor JABS replied to my questions.

The One Click Group was hostile when I approached them with some straightforward questions. I was directed to another charity and, bizarrely, Peter Fletcher, former chief scientific officer at the Department of Health. When I asked to be taken off its mailing list I was told: “Unsubscribing from the One Click News Alerts requires one mouse click. If this is beyond you, never mind eh?”

And yet the media (including the BBC and broadsheets) continue to give these organisations publicity.

Professor Salisbury says: “There is no doubt that the media give disproportionate weight to the [antivaccine position]. Look at the frequency that journalists writing articles about immunisation go to Jackie Fletcher for a comment.”

“For some campaigners no study is acceptable if it continues to show no link—you get answers by rote: the study was weak, didn’t look at the right children, didn’t use the right method. It’s like AIDS denialists, and there are evidence denialists. The constituency base [of these groups] has got narrower and narrower. There are a diminishing number of people who think [there is a link]. Look at the number of people who contribute to the JABS website; it’s down to a tiny number.”

He’s right. These groups are increasingly talking to themselves (at least in the UK). They have nothing to offer.

Autism and aspergers are essentially the same

26 Jun

Interesting new study in the upcoming issue of Journal of Autism and Developmental Disorders which examines the historical emergence of the classification of autism alongside the emergence of the classification of Aspergers. Abstract is:

The histories of autism and Asperger’s Disorder (AD), based on original contributions by Kanner and Asperger, are reviewed in relation to DSM-IV diagnostic criteria. Their original articles appear to have influenced the distinction between AD and autism made in the DSM-IV. Based on up-to-date empirical research, however, it appears that AD and autism are not qualitatively distinct disorders, but are different quantitative manifestations of the same disorder. The differences between AD and autism may be a function of individual variability in these areas, not the manifestation of qualitatively distinct disorders. The DSM-IV criteria for AD and autism need to be considered with their historical developments, and based on empirical evidence, the DSM-IV diagnostic criteria may be subject to critical review.

The whole paper is a fascinating and accessible read but its overall conclusion is difficult to resist. Despite certain peoples beliefs that autism (by which I mean classic/severe/whatever) and aspergers (and the artificial construct of HFA) are very different, there is, in reality, very little difference between the two and, as the author argues, are simply slightly differing manifestations of the same ‘thing’.

Sanders (the author) makes the excellent point that the fact that these are seen as two different things is almost certainly due to the fact that Aspergers paper was only introduced into the USA in 1981, one year after the introduction of DSM III. It was further not fully translated into English until 1991. Amazing.

There is apparently talk of separating autism and aspergers in the new revisiion of the DSM. Based on the contents of this paper I’d say that is very premature.

Rethinking Autism

25 Jun

There have been many push-backs to Jenny McCarthy and her views on autism. There has been a lot of blogging, including right here on LeftBrainRightBrain. There is a website StopJenny. There is a Jenny McCarthy body count. Now there is a new site, Rethinking Autism. While it doesn’t directly mention Jenny McCarthy, it is pretty clear that she was a prime motivator for that project.

The person who created Rethinking Autism describes herself this way:

I am the mother of an autistic boy. I have had enough of the pseudo-science quackery that certain celebrities are pitching to parents of kids with autism. The media is concentrating on the pseudo-science and there needs to be a forum for more tried and tested information. It is virtually impossible for an individual to deliver a counter-message, but I may have found a way with RethinkingAutism.com.

The main page carries this message:

All too often in the world of autism, celebrity and sex appeal are used to promote pseudo-science that exploits autistic people, their family members and the public. We decided to put those very same factors to work in service of the truth.

What is her method? Videos. Not just videos, but videos that use autism, celebrity and sex appeal. OK, the Rethinking Autism “celebrity” is not as well known as Jenny McCarthy, but you will get the idea with these videos, by Leeann, who:

Leeann is the friend of a family with an autistic child. When asked if she would help, she graciously agreed. She immediately understood the tongue-in-cheek nature of the spots and, as you’ll see, brought her “A” game!

I’m also rather fond of this one…

There are a number of good videos, as well as concise, clear “key concepts”.

I got a good chuckle out of the videos–and I like the message being sent.

Over at Lisa Jo Rudy’s Autism.About.Com blog, there has been some discussion of these videos. Lisa poses this thought:

In my opinion, Commandatore may get a good deal of personal publicity for her arty and provocative style. She’s also likely to get a lot of flack for her anti-feminist, disrespectful approach to autism education. She’s unlikely, however, to make much impact as an educator.

The way I see it, this is as much a satire on the entire “sex sells” advertising culture as the vaccines-cause-autism-gotta-cure culture. As such, I didn’t see it as anti-feminist. However, I am a heterosexual male and a product of the “sex sells” culture, so I may be biased.

There is also discussion in the comments there about whether Jenny McCarthy was in any way an inspiration for the Rethinking Autism website. Commenter Lynne states:

Jenny isn’t posing seductively to tell the story of her son or otherwise leveraging her sexuality to share her experience with autism with other families. It’s a HUGE leap to say that Jenny McCarthy is responsible in any way for these totally dumb videos.

I find it odd that people who can draw such concrete conclusions from such bad data (i.e. vaccines caused an epidemic of autism, or Jenny McCarthy has a cure for autism) can’t see what is a much more simple connection. I’d bet good money that Rethinking Autism wouldn’t exist if it weren’t for Jenny McCarthy. And, what’s with that “…or otherwise leveraging her sexuality…”. Please. Jenny McCarthy has been leveraging her sexuality for about 20 years now. Do you really think that Jenny McCarthy would be on Larry King Live or Oprah without her career selling her sexuality? Come on.

Consider this. Before Jenny McCarthy telling about vaccines causing autism and recovered kids there was Stan Kurtz. Mr. Kurtz is quite good at self promotion too. But, this is Stan Kurtz:

Stan Kurtz

Stan Kurtz

Not a bad looking guy, but no potential male model either. Not a celebrity. No autism national exposure pre-Jenny McCarthy either. Yes, correlation is not causation. But, really, does anyone think he was going to be invited onto, say, The Doctors, without Jenny McCarthy?

Sorry, there is a very clear reason why Jenny McCarthy gets camera time. It isn’t because she is such a good writer (I’m not impressed). It isn’t because her message is new (it isn’t). I welcome Rethinking Autism’s approach to both the Jenny McCarthy message and the “Sex Sells” culture.

US Supreme Court Ruling on Special Education

24 Jun

The US Supreme Court has ruled in the case of Forest Grove School District v T.A. The question was fairly simple: can a child be granted a private placement (outside of the state educational system) if that child doesn’t receive any services from the district?

The district in question argued that the Individuals with Disabilities in Education Act (IDEA) states that a placement could not be paid for (or in this case reimbursed as the parents were footing the bill at first) if:

“previously received special education or related services under the [school’s] authority.”

The family argued that the key provision of the IDEA is the concept of FAPE: the school system must provide a Free Appropriate Public Education. If the district has no appropriate placements, how can the parents be expected to place their child with the district?

The US Supreme Court sided with the parents:

Held: IDEA authorizes reimbursement for private special-education services when a public school fails to provide a FAPE and the private school placement is appropriate, regardless of whether the child previously received special-education services through the public school.


Kristina Chew has covered this already at Change.Org, as have others.

This is exactly the sort of topic we as a community and as a part of a greater disability community should be discussing. It is vitally important to those with children in the US. I hope that such decisions will have impact internationally as well.

It’s new! It’s spam! It’s revitaPOP: The MB12 Lollipop

23 Jun

I just got a nice spam email from Stan Kurtz, inventor. See, he invented this lollipop with methyl B12 in it to cure…well…almost everything.

Actually, I am a bit confused on that point. I often am from claims in alternative medicine. You see, from his website, Mr. Kurtz states

MB12 is a very unique vitamin and deficiency can affect vision, intestinal function, the ability to protect against infections and toxins, nerve functioning, and DNA replication.

Dang, it protects against DNA replication!?! Does that sound, well, problematic to anyone else? (see comments below. I mis-read the above statement.)

On his website, Stan Kurtz himself tells us that:

What I can tell you is that MB12 truly changed my life. I suffered for years with irritable bowel symptoms, chronic viral infecitons and ADHD and after I took this product I felt better. Since then I’ve personally observed hundreds of people’s lives change through the supplementation of MB12.

You see, it doesn’t “treat” anything, but it changes your life if you have certain disorders. Also, mB12 is “involved in” a whole host of disorders. No direct claims that mB12 supplementation “treats” the disorders. Just a great big implication.

But, then there is the disclaimer. Always a disclaimer. Gotta have a disclaimer.

These products are not intended to diagnose, treat, cure or prevent any disease

No use spending a lot of time on the contradictory nature of claims made by people touting supplements. Mr. Kurtz didn’t invent this sort of doublespeak, and he won’t be the last to use it.

Still, I thought this “revitapop” thing was odd, so I checked a few things out. Like, Stan Kurtz’s otehr website which touts the benefits of MB12, but also states:

Stan has chosen not to sell or profit from the use of this vitamin.

I guess it depends on your definition of the word “sell” or “profit”? $35 for 30 lollipops sounds like there could be room in there for profit.

What also caught my eye was this: “* patent pending”. It caught my eye because I thought, “How can someone patent this?”

I can’t find the patent application for the lollipop version of MB12, but I did find the patent application for his MB12 nasal spray. Patent application US29012039A1.

Claim one of the patent describes the vast number of disorders that are “treated” with this nasal spray:

A method of treating a psychological or neurophysiological disorder, comprising nasally administering methylcobalamin, or a pharmaceutically acceptable salt thereof, to a person in need of such treatment in an amount sufficient to treat the disorder in the person, wherein the disorder is selected from the group consisting of:attention deficit hyperactivity disorder (ADHD), anxiety, depression, stress and chronic stress, socialization problems, mood problems, behavior problems, memory problems, dislexia, depth perception problems, color viewing problems, visual and auditory processing problems, light modulation problems, night vision problems, speech problems such as finding words, apraxia, and articulation problems, sleep regulation problems, eye or muscle movement problems, chronic fatigue problems, digestion problems, sensitivity to chemicals, viral infection, inflammatory conditions such as rheumatoid arthritis, sciatica, and fibromyalgia, asthma, irritable bowel, colitis, tinnitus, migraines, nail biting, and autoimmune problems.

Typical of alternative medical treatments–they treat everything. Always a warning sign, if you ask me. It is interesting to me that autism is not specifically mentioned in the patent. There must be a reason for that.

Is this really new, or novel, as they say in the patent business? It seems that that there is already a patent on nasal sprays to administer Vitamin B12, Vitamin B12 nasal spray and method of use. Filed in 2006, and it mentions mB12.

There is a phrase in patent law: obviousness. Taking one invention, say, mB12 nasal spray, adding it to another supposed invention, treating certain disorders claimed to respond to mB12 is, well, obvious. As they say, anyone “skilled in the art” would put those together.

Even if this doesn’t meet the definition of non obvious, I still think this patent has little chance of success. Consider this paragraph from the US Patent office:

In order for an invention to be patentable it must be new as defined in the patent law, which provides that an invention cannot be patented if: “(a) the invention was known or used by others in this country, or patented or described in a printed publication in this or a foreign country, before the invention thereof by the applicant for patent,” or “(b) the invention was patented or described in a printed publication in this or a foreign country or in public use or on sale in this country more than one year prior to the application for patent in the United States . . .”

(emphasis mine)

Mr. Kurtz’ patent application was field March 17, 2008.

mB12 nasal sprays–as touted by Mr. Kurtz himself–have been discussed online since at least 2005. I guess Mr. Kurtz is counting on the patent examiner not checking the AutismOne website for Mr. Kurtz’ own talk on nasal spray mB12 in 2006. But, even without that, Mr. Kurtz’ own website has discussions of the nasal spray from March 16, 2006– that predates his patent application by 1 year. 1 year and 1 day. Ironic, that.

It will be interesting to see the lollipop patent application. I mean, there are vitamin B12 lollipops already, too. I wonder when Mr. Kurtz first publicly discussed his lollipop invention? Did he shoot himself in the foot here too?

Transition into adulthood – problems for autistics

20 Jun

The recent success of the Autism Bill is in part due to a decade of patient work by the All Party Parliamentary Group on Autism APPGA

is a formal cross-party backbench group of MPs and Peers who share an interest in autism and Asperger syndrome. It was set up in February 2000. Its role is to campaign in Parliament for greater awareness of autism and Asperger syndrome, and to lobby the Government for improved services for people with autism and Asperger syndrome, and their carers.

APPGA has just released an important report on Transition into Adulthood about that awkward period when young people with autism are coming to the end of their education and their parents are trying to obtain a package of suitable services to sustain them into adult life. The APPGA report lends support to the recent finding by the National Audit Office that services for autistic adults are in a parlous state. It should come as no surprise that the inadequacies of adult provision often result in an unsatisfactory transition.

At present all school children with a Statement of special educational need in England and Wales (there are parallel but differing arrangements in Scotland and Northern Ireland) are entitled to an annual review. At 14 years of age this becomes the Transition Review and it is the duty of the local authority to make arrangements for a smooth transition to adult services when the child leaves school. This works well enough for many pupils with severe learning difficulties who often stay at school until they are 19. Their transition to adult services comes at around the same time as they leave home and move to supported living in group homes or other residential settings and maybe employment or further education.

But most children leave school at 16 and adult services do not kick in until they are 18. Many children are left in limbo. Young people with autism, especially those without a Statement frequently lose out. If you have not got a Statement you do not get a transitional review. Even with a Statement things can still go wrong, especially for those in mainstream education. According to APPGA

Frequently, decisions about a young person’s next placement are made only when they are approaching the end of their schooling or, worse still, after they have left school. In the vast majority of cases where transition planning is taking place, it is happening without the involvement of adult social services. Contributors stressed how vital it is to address this. A recurrent theme was the mental health problems which developed, in part, as a result of these failures.

Other significant findings were that

  • Wrong expectations could derail the transition process. Low expectations became a self-fulfilling prophecy for some while unrealistic expectations placed on young people who lacked obvious cognitive impairments set them up to fail.
  • Inter-agency working could be a nightmare, especxially when no one agency took responsibility for leading the process.
  • Professionals lacked the necessary training in autism to inform their contribution to transition planning.
  • Parents and young people did not have adequate information about the available options.
  • Transition was often funding led. i.e it was a bureaucratic measure to allocate the budget and not a tool to identify the needs of young people.

    • APPGA’s recommendations will have no statutory power unless they are included in the statutory guidance that the government is planning to issue later this year. It is important that they make it into the guidance, especially as they independently reiterate many of the recommendations of the National Audit Office. So once more I urge readers in the UK to visit the NAS website and learn how you can contribute to the government consultation on adult services.

    Campaigning by the NAS and its allies is beginning to pay off after years of patient work offering detailed and practical ways forward for government and local councils to meet the challenge of autism. At last they are listening and seem to have the will to do something positive. Make sure you have your say and help to make it count.

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    Autism mum needs help of autism community – please help

    16 Jun

    I tweeted a few days ago about the awful thing that has happened to my friend Melissa, an American single mum with two sons of whom one is autistic. BUt nothing can say it as powerfully as her own words.

    Is where I am.
    To say I’m overwhelmed is an absolute understatement.

    My house burned down today.

    Yes, I’m serious.
    We’re fine- everyone made it out safe.
    But our cat did not make it.

    I don’t really even know what to write at the moment, other than my heart is breaking.
    You think you’re prepared for such things, “if ever there’s a fire, I’m grabbing this, this, and this,”
    Not so.
    We have our pajamas.
    I grabbed kids and ran like hell.

    On top of that, Companion’s car was engulfed in flames.
    My car literally exploded.
    Homeless and carless all in one night.

    We are currently at my parent’s.
    I will update when possible.

    Please keep us in your thoughts and prayers.

    I’ve set up a chipin widget (see right. IE6 users scroll down, sorry). This is linked directly to Melissa’s PayPal acct. Please contribute as much as you can. You do not need a paypal account to help.

    Melissa’s lads also wear clothes in the following sizes: 10/12 and 4T. I don;t know how to start getting things directly to her yet but please put anything you have to one side and I’ll return to this subject hen I know more.

    Please help. I’d really like to have Melissa get a sizeable amount of money from the autism community. This goes beyond any neurodiversity/vaccine/genetic research issue. Please help and please pass this on. Retweet if you’re a Twitter user and blog about it yourself if you’re a blogger.

    Thanks you in advance.

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