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Guilty plea in Texas “fight club”

7 Jul

One of the worst stories in the last year was the “fight club” environment in a Texas school for children with disabilities. I was disgusted then, it is disgusting now. But, at least there is some justice on the horizon.

From Disability Scoop:

D’Angelo Riley pleaded guilty Monday to three counts of causing injury to a disabled person. A former employee of the Corpus Christi State School in Corpus Christi, Texas, Riley was one of six charged after cell phone videos were discovered in March showing employees forcing residents to fight. Police said fights went on at the facility nearly every night for over a year. Riley is expected to be sentenced Thursday.

Meanwhile a judge said Tuesday that the cell phone videos would not be admissible as evidence at the trial of another former employee, Timothy Dixon. Prosecutors in the case said they would appeal the ruling and Dixon’s case is now postponed.

According to one news story, the reason the phone videos are out is because the evidence was obtained illegally. The person who found the phone didn’t intend to return it.

I await information on sentencing.

Brian Deer talks back to Andrew Wakefield

7 Jul

I was copied in to the following:

Date: Mon, 06 Jul 2009 18:12:00 +0100
To: “Joanna Bower”
From: Brian Deer
Cc: Thoughtful House

Ms Joanne Bower,
RadcliffesLeBrasseur LLP

Dear Ms Bower,

Your client, Dr Andrew Wakefield, has published, and caused to be published, on his website, thoughtfulhouse.org, and on other sites, false claims that the Press Complaints Commission has issued an “interim order” concerning my investigation into his conduct. Dr Wakefield claims that The Sunday Times has been ordered by the PCC to remove my stories about him from its website.

I understand that the PCC has written to your client to point out that these claims are untrue. In fact, all of my stories concerning him are available at the Times Online website.

thoughtfulhouse.org is unquestionably controlled by Dr Wakefield, and his publication there has caused similar untruths to be published on websites either directly controlled for his interests, such as cryshame.org, which, as you may know was set up by Mrs Isabella Thomas, the parent of two of the children anonymised in the now-infamous Lancet MMR paper, or indirectly controlled for his interests, such as ageofautism.com, operated to promote and profit from concern over children’s vaccines.

It is, of course, nothing new for Dr Wakefield to mislead the public, and especially the parents of autistic children. He has faced the longest ever proceedings before a General Medical Council fitness to practise panel, following the GMC’s reinvestigation of my journalism. In due course, I’d expect he will face a hearing of the PCC, covering much of the same ground on a significantly different evidential base.

However, you may feel it advisable to explain to your client that either he accepts the untruth of his latest claims and takes them down, or he maintains them in publication, in which case his conduct would not merely be wrong, but would be dishonest.

With best wishes,

Brian Deer

http://briandeer.com

Eric London resigns from Autism Speaks

7 Jul

Dr. Eric London has resigned from Autism Speaks. I read his resignation letter a while back, but I held off blogging it until I could confirm it was legitimate. This letter is taken from the Autism Science Foundation blog.

After three years of great hopes for Autism Speaks being the optimal vehicle to advance autism science and treatment, I regretfully and sadly must announce my dissociation from this organization, including resignation from the Scientific Affairs Committee.

Despite the very excellent work that Autism Speaks has done in the area of awareness and legal advocacy, there are many differences which I have with the organization, mostly concerning the direction and prioritization of the science program. There have been numerous decisions made which I believe have adversely impacted autism research and none of those decisions were made upon the advice of the Scientific Affairs Committee. The processes with which science decisions have been made have been contrary to my hopes and expectations when the NAAR-AS merger was effectuated.

If this were the only issue, I might have continued to try to work from within the organization to influence science policy and direction. However, the pivotal issue compelling my decision is the position which Autism Speaks is taking concerning vaccinations. The arguments which Dr. Dawson and others assert– that the parents need even further assurances and there might be rare cases of “biologically plausible” vaccine involvement –are misleading and disingenuous. Through its website and other communications, Autism Speaks has been influential and contributory in encouraging parents’ doubts. By preferentially investing and advocating for the use of limited financial resources on the “biological plausibility” argument, the organization is adversely impacting the advancement of autism research.

Recent reports have documented significant outbreaks of measles and other infectious diseases which could have been controlled and even eradicated. The lowering of the vaccination rate has already led to deaths. If Autism Speaks’ misguided stance continues, there will be more deaths and potentially the loss of herd immunity which would result in serious outbreaks of otherwise preventable disease. I further fear that if and when herd immunity is lost, there may be a societal backlash against the autism community.

In my role as an Autism Speaks Scientific Affairs Committee member, I would be lending credibility to an organization whose scientific agenda and positions I can no longer ethically support. Please accept my resignation, effective immediately. If anyone would like to discuss this with me further, please do not hesitate to contact me.

Sincerely, Eric London MD

This is pretty harsh criticism of Autism Speaks, which has touted itself as a science-based organization taking direction from the research community. Instead, it appears that decisions are being made in direct opposition to their own Science Affairs Committee.

You may recall that when the IACC’s Strategic Plan was released, Autism Speaks pulled support (whatever that means) based on the lack of research into vaccines. No comment from Autism Speaks on lifespan issues, therapies or any other topic. Just vaccines.

The big question is whether Autism Speaks is just another Vaccines-Cause-Autism organization but hiding under a cloak of science. If so, they should let the donors know so they can take their money elsewhere.

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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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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