Yale Daily News: Redefinition of autism sparks concerns

3 Feb

The proposed changes to the way autism is diagnosed with the DSM 5 has sparked a lot of discussion in the online autism communities and elsewhere. A surge in the discussion came in response to a New York Times article New Definition of Autism Will Exclude Many, Study Suggests, in which the Times discussed preliminary results of a study by Prof. Volkmar of Yale.

The Times put the emphasis on reducing the “autism surge”, quoting Prof. Volkmar as saying “We would nip it in the bud”:

The new analysis, presented Thursday at a meeting of the Icelandic Medical Association, opens a debate about just how many people the proposed diagnosis would affect.

The changes would narrow the diagnosis so much that it could effectively end the autism surge, said Dr. Fred R. Volkmar, director of the Child Study Center at the Yale School of Medicine and an author of the new analysis of the proposal. “We would nip it in the bud.”

The Yale Daily News has an article “Redefinition of autism sparks concerns” where they sought more dicussion from Prof. Volkmar:

“I think [the proposed revision] is a mistake,” Volkmar said. “It changes people’s eligibility for key services, and a lot of people expressed concern.”

He said the change would not only affect autistic patients’ access to medication and medical services, but also impact their eligibility for special schools. Volkmar also questioned the scientific validity of the decision.

You can read more about this story on the Yale Daily News website.

Transcripts from the GMC hearings

2 Feb

With the defamation suit by Mr. Wakefield filed in Texas there is the strong possibility that the discussions will ensue again about what actually happened during Mr. Wakefield’s research at the Royal Free hospital. The one record of this is in the transcripts for the GMC hearings. These can be found online in a few places (casewatch and Sheldon 101’s blog Vaccines Work, for example). These are useful resources but somewhat cumbersome. Most people are not going to download a file to check a quote in context. And context can be very important, as we’ve seen here on Left Brain/ Right Brain where previous discussions by Mr. Wakefield’s supporters often involved pulling quotes out of context.

I don’t want to clutter this site with the transcripts, but I do want them in a place where internet search engines can find them and people can easily link and check quotes. So I am now uploading them to a new blog. It should take a few days to get the transcripts online in this format. About 30 days worth are up now.

In doing so I re-read some of the pages. One of the best examples of what happened is covered on Day 28. This is the day when the mother of Child 12 (last of the 12 children in the Lancet study) testified.

This one day’s testimony addresses many of the discussion topics which come up repeatedly in online discussions:

1) Parents of the Lancet Children were not prevented from testifying at the GMC.

2) She was the only one who did testify. She was the only one called by the GMC. The defense appears to have not called any of the parents.

3) Mr. Wakefield’s attorney declined the opportunity to even cross examine this parent.

4) The idea that Mr. Wakefield only reported what parents told him isn’t well supported by the evidence. Rather, there is a very circular route for the idea that the MMR causes autism. Mr. Wakefield and Mr. Barr (the attorney working on the litigation) were in contact with this parent multiple times before the child was seen at the Royal Free.

5) Some of the children in the Lancet study were registered with Legal Aid at the time of the study, and well before the Lancet paper was published.

6) The idea that the children were referred through normal channels is not accurate. While this child was referred through general practitioners, there was much contact between the mother, Mr. Wakefield and the attorney before that. One letter from the attorney makes it clear that they expressly told the parents to be sure to get the GP referral.

7) The idea that this work was not a research study isn’t really accurate. Mrs. 12 repeatedly gives her impression that they were involved in a research study.

Yes, this has all been covered before. Unfortunately, I fear this will all be covered repeatedly as this new case works its way through the court.

With that, here are some excerpts from the Day 28 testimony. Which you can check in context.

Q I think it is right that at around the same time, as well as that contact with Dr Wakefield, did you also have some contact with a firm of solicitors called Dawbarns?
A Yes, that is right.

Q Can you tell us how that came about. Why did you get in touch with them?
A The same mother told me about them as well.

Q What was your understanding of what they were doing?
A They were trying to really put a stop to the MMR vaccine being used and obviously to stop any damage that was being done to children.

Emphasis added. Mrs. 12 thought that Dawbarns “were trying to really put a stop to the MMR vaccine being used”.

After contacting the lawyers, she received a letter. This is dated 18 July 1996. Her son wasn’t seen at the Royal Free until 18 October, 1996, three months later:

“Dear [Mrs 12],

Thank you for contacting us regarding the MMR vaccination. We are investigating a number of vaccine damage cases and are also (with Messrs Freeth Cartwright Hunt Dickens of Nottingham) co-ordinating and managing the Mumps Measles and Rubella cases on behalf of the Legal Aid Board for the whole country. Recently the Legal Aid Board has also extended our contract to investigate claims following the Government’s measles/rubella vaccination campaign in the autumn of 1994.

To give you an idea of our work I enclose an information pack which consists of a copy of a fact sheet which we have produced on the MMR vaccine and a fact sheet on ourselves.

We have built up a considerable volume of evidence that vaccines can cause injury to children, and we are hoping to take compensation claims to court. See the fact sheets for more information. Legal Aid is now being granted in vaccine damage cases where we can show a close link up in time between the vaccine being administered and the onset of recognised side effects. In claims being brought on behalf of children the Legal Aid Office does not take into account the finances of the parents, but there are sometimes difficulties in obtaining legal aid …”

She was supplied with a “fact sheet” written by Mr. Wakefield. No contamination of the study there, right? In the Lancet he’s just reporting what the parents told him. No mention of the issue of the parents being supplied with a “fact sheet” to guide them.

Richard Barr (the attorney managing the litigation effort and teamed with Andrew Wakefield) wrote her on 14 August 1996

“We are also in touch with other experts and together they are hoping to establish a link between the vaccine, inflammatory bowel disease and autism. There is a clear cut biological mechanism for linking the two conditions. I suggest it might be worth your while to contact Dr Wakefield. If you would like me to do so I will be happy to make the introduction for you. May I have permission to send him a copy of the statement that I have prepared for [Child 12]?”

They are hoping to establish a link and “there is a clear cut biological mechanism for linking the two conditions [bowel disease and autism]”. Two months before being seen at the Royal Free she is informed about the effort to link MMR with autism and bowel disease and the idea that autism and bowel disease are linked.

Clearly any study reporting “what the parents told us” is contaminated at this point.

If you think the study could be salvaged, even with this level of contamination, here is a discussion of the fact sheet supplied to the parents as mentioned above:

Q The next document was a fact sheet, and that apparently comes from the Royal Free Hospital School of Medicine, as you will see at the top of the page. If I can just run through what some of that says, it is headed,

“Inflammatory Bowel Disease, measles virus and measles vaccination.

What is inflammatory Bowel Disease (IBD)?

IBD comprises 2 conditions that have many similarities. Crohn’s disease and ulcerative colitis. Crohn’s disease may affect any part of the bowel, from mouth to anus, whereas ulcerative colitis affects the large bowel only. Many people now believe that these two conditions are part of a single spectrum of intestinal disease. IBD is often difficult to diagnose in children, especially Crohn’s disease, and this may lead to a delay in diagnosis with frustration for parents, doctors and, in particular, the affected children.

What is the link with measles and measles vaccine?

Measles virus was put forward as a possible cause of Crohn’s disease in 1989. The dramatic rise in the incidence of inflammatory bowel disease in developed countries over the last 30 years, in the face of live measles vaccination, also suggested a link between the vaccine and the disease.

Several groups from around the world have now identified measles virus in tissues affected by Crohn’s disease and an immune response to measles virus in the blood of patients with Crohn’s disease and ulcerative colitis. Early exposure to measles virus appears to be a major risk factor for developing Crohn’s disease later in life, and one study recently linked live measles vaccine to both Crohn’s disease and ulcerative colitis. Several new studies are currently underway that are designed to clarify the association between measles vaccination and inflammatory bowel disease. Although no studies have formally examined the issue, we have been aware of a large number of new cases of childhood IBD following the MR revaccination campaign in November 1994”.

Then the fact sheet sets out what you would look for (and what you should do: contact Andrew Wakefield):

Q The next document was a fact sheet, and that apparently comes from the Royal Free Hospital School of Medicine, as you will see at the top of the page. If I can just run through what some of that says, it is headed,

“Crohn’s disease. The symptoms and signs of Crohn’s disease in childhood are often insidious and non-specific and may lead to a delay in diagnosis. Intestinal symptoms include mouth ulcers, cramping abdominal pains, loss of appetite, diarrhoea with or without blood and problems in the anal region, including skin tags, tears or abscess formation. However, children commonly present with weight loss and failure to thrive as the only indications that they may have Crohn’s disease. But be aware, unexplained joint paints, sore eyes and skin rashes can also be the presenting symptoms of Crohn’s disease.

Ulcerative colitis is often more clear-cut, with diarrhoea, urgency and blood and mucus mixed in with the stools. Again, growth failure and symptoms such as joint pain may precede the intestinal problems.

What should we do?

If you suspect that your child has inflammatory bowel disease, prompt referral to a specialist centre is essential. Either the diagnosis will be excluded and your mind put at rest, or it will be confirmed and the appropriate treatment instituted. As a first step you should contact Dr Andrew Wakefield at the Royal Free Hospital”,

A document by Wakefield, possibly from the Royal Free says that there is a link between Crohn’s disease and the measles vaccine. This given to prospective study subjects before being seen at the Royal Free. But no contamination of the study subjects again, right?

Child 12 was registered with Legal Aid before in August, two months before being seen by the Royal Free:

Q Also enclosed with that letter of 14 August 1996 were the legal aid forms. I think that is right. Did you fill in the legal aid forms in order for an application to be made for your child to be legally aided?
A Yes.

One issue that Mr. Wakefield has brought up in recent years is the concern over vaccines containing the Urabe strain of mumps. Mr. Wakefield has gone into detail about how he was informed by a “whistleblower” about how the government handled the licensure of those vaccines. Mr. Wakefield had those discussions with the whistleblower in 1999 but appears to have done little with the information until the past few years. Why? Perhaps this comment by his colleague Richard Barr will shed some light onto this: “Although Immravax and Pluservix were withdrawn on safety grounds, the particular problem they caused was fairly limited. ” It was the opinion of Mr. Barr at the time that the Urabe strain mumps concerns with some of the MMR vaccines was “fairly limited”. Mr. Barr and Mr. Wakefield, of course, had a different avenue to pursue: the measles/gut disease/autism hypothesis.

In Sept. 1996, Barr sent Mrs. 12 a newsletter:

Under the heading, “Pilot study”,

“If we can prove a clear link between the vaccines and autism/inflammatory bowel disease this will be exceedingly useful, not only for cases involving those conditions, but also for other types of damage such as epilepsy.

To obtain the evidence to do this, we will be running a pilot study. Around 10 children with symptoms which are closely linked to the vaccine will be extensively tested by a team of doctors headed by Dr Wakefield at the Royal Free Hospital in London. We will be selecting children to take part in the study from details and medical notes we already have. The investigations will involve a whole battery of tests to be carried out by a number of leading experts in their fields. We will of course be liaising closely with the families concerned and the doctors will be giving very full details of what will be involved”.

Need I point it out again? Before even arriving at the Royal Free, Mrs. 12 was informed about the need to provide a clear link between vaccines and autism/bowel disease.

Q We have heard from the Dawbarns newsletter that I read to you previously that as far as the solicitors were concerned there was a pilot study being arranged. Did you have any understanding or awareness whether your little boy was a part of that pilot study at all?
A He was referred to Dr Wakefield by my GP for investigations, which I understood to be research investigations, but that was the route he was referred.

She felt that her child was being referred for “research investigations”

Mr. Wakefield is keen to tell everyone that the referrals came through the GP’s. He doesn’t mention that he and Mr. Barr made sure ahead of time that they went through the GP’s:

“Dear Mrs [12]

Many thanks for your letter of 10 September 1996. I will contact some other parents in your area and if they agree then you can all swap names and addresses. It is interesting how isolated people feel (and sometimes are!).

I would like to see the records. These may well be helpful if we have any difficulties over legal aid. At the moment I am still waiting to hear from them.”

So that was the end of the correspondence, and I now want to ask you about the actual referral, which you have explained to us was through your GP to the Royal Free Hospital in respect of your boy. We have been through this already, but just to remind you, if you go back to the GP records, please, page 126, this is a letter that I asked you about when I first began to question you, Mrs 12, the letter from Dr Wakefield, and we see in that the suggestion that you in fact you should go to your GP for a referral. Did you do that?

Emphasis added.

On admission to the Royal Free:

Q “Soils – not had diarrhoea. Has variable abdominal pain”, and then I cannot read the rest of that sentence. Mr Miller is trying to assist me – “occurring every week”. Thank you. “Mother had not associated vaccination with his problems until met a parents support group”. Does that set out the problem as far as his gastrointestinal symptoms were concerned, I mean obviously in brief terms?
A Yes.

“Mother had not associated vaccination with his problems until met a parents support group”. Earlier in the transcript it is noted that this parent group included the mother of Child 6 and 7 and this is where Mrs. 12 was put in touch with Mr. Barr and Mr. Wakefield.

After her son was seen at the Royal Free, here’s the letter Mrs. 12 wrote. Note that she read the proposed “clinical and scientific study notes”. But this was just a routine referral, right?

“Dear Professor Walker-Smith,

I am writing following [Child 12’s] visit to the Royal Free Hospital last Friday 18 October 1996. My husband and I have thought long and hard about this situation since the appointment. We have also re-read Dr Wakefield’s proposed clinical and scientific study notes.

We do feel that [Child 12] does have a problem in that most children of his age do not soil themselves a number of times a day. As well as being pale in colour and foul smelling (as are his motions in general), this soiling is always very loose, which might explain why he is not always aware that he has done anything. Although I would not say it was diarrhoea exactly.

Obviously I do not wish to put my son through any procedures unnecessarily but there must be a reason why he has these problems. Also, as I mentioned to you at our meeting, [Child 12] is not growing or putting on weight like my other two children.

I keenly await the results of the blood tests and if you feel they warrant further investigations my husband and I are happy for him to be referred on to Dr Wakefield’s study project. As you pointed out, it might not help [Child 12] but if not hopefully it will be of benefit to others. There is also the chance that [Child 12] has a problem that can be detected and helped.

I do hope to hear from you in due course.”

In a letter to Mr. Wakefield she notes:

“Finally, I would like to say how nice it was to meet you at the JABS open meeting on 4 October in London. I found your short discourse both informative and interesting. I wish you all the best with your research.”

Yes, Wakefield was lecturing at JABS (an organization focused on vaccine injury) meetings. Mrs. 12 attended. This is Oct. 4, two weeks before her child was seen at the Royal Free.

Once again, we are in the merry-go-round. Mr. Wakefield only reported what the parents told him, except that here we have a clear example of a parent hearing from Mr. Wakefield on more than one occasion about what he was investigating.

The first visit to the Royal Free was not with Mr. Wakefield (Mr. Wakefield did not have clinical duties). Child 12 wasn’t even going to be referred to Mr. Wakefield at first:

Q So that was from your point of view, but you say in your letter to Dr Wakefield, Professor Walker-Smith’s main reasons for not referring [Child 12] on to Dr Wakefield was the absence of blood in the faeces and the lack of diarrhoea, you were saying that is what Professor Walker-Smith’s view was, is that correct?
A Yes.

But a blood test was “slightly abnormal” so they did make the referral.

“Dear [Mrs 12],

I do apologise for the delay in replying to your letter of 28 November. The slight abnormality that you referred to in your letter was that one of the markers of inflammation was just slightly above the normal range, it just means that we should go ahead. I understand that [Child 12] is coming in in the New Year to have a colonoscopy.”

A “slight abnormality” was enough to warrant a colonoscopy. Oddly enough, a later letter states that the blood tests were not abnormal.

The psychiatrist was not very clear on autism diagnosis:

Q If you to go page 18 in the medical records, we have a note dated 10 January, and in fact we have heard some evidence from Dr Berelowitz and he has given evidence in relation to all the children, including your son, and it was his evidence that this was his note, and we see at the bottom a diagnosis of “language delay ? [attention deficit disorder]” and then “? Asperger’s”: do you have any recollection of that?

The Royal Free didn’t think child 12 should have an MRI or a lumbar puncture.

Q If we go back to the Royal Free records – you can put FTP7 away, you will not need it again – at page 21 – it is on 6 January, so the day after the admission – at the bottom of the page it says, “[Ward round] Professor Walker-Smith” and it is a note signed by presumably a junior doctor, “colonoscopy” and then it gives, “prominent lymphoid follicles …” and “? some minor inflammatory changes” and then it says, “not to have MRI or L.P.” In other words, not to have an MRI scan and not to have a lumbar puncture. Then, Wednesday to have a barium meal. Were you aware at all of that note, Mrs 12? Were you aware at the time that that instruction had been given?
A No.

Emphasis added. But a colonoscopy and lumbar puncture were performed:

Q You say that you recall your son having a lumbar puncture and an MR scan; were you there for those?
A Yes.

Q You have obviously given consent for the MR but were you actually there when they were carried out?
A Yes.

Q Both of them?
A Yes.

Again, Mrs. 12 felt this was a research project:

Q You have told us that you thought that your son was part of a research investigation. Did you have any understanding as to which of those investigations, all of them or any of them, were part of the research investigations?
A As far as I understood, it was all part of the research into this possible link between the problems that [Child 12] had and the vaccine.

The tests apparently showed some immune activation

“Dear [Mr and Mrs 12],

I am writing to confirm the results from [Child 12]’s visit in the New Year. All were normal, including test for Fragile X, except the immune test. This shows evidence of persistent viral infection; i.e. [Child 12]’s immune system is activated in such a way that indicates it is trying to deal with some sort of ongoing viral infection. If you need to discuss these further please contact Dr Wakefield. I have passed on your query about gluten free diets to Dr Wakefield. I hope that [Child 12] is well and that his aching knees are settling”.

Then she gives some results at the bottom of the page. It shows,

“Full blood count and inflammatory markers – normal (i.e. no evidence of anaemia or inflammation”,

and various other negative tests.

Emphasis added. But above we read that the reason why Child 12 was referred for a colonoscopy was because a blood test indicated possible inflammation.

In June 1997, after the work at the Royal Free was finished, the attorney, Richard Barr, wrote to Mrs. 12:

“Thank you for your letters of 3 and 10 May 1997. I am sorry about the delay in coming back to you. I inevitably seem to be behind with my correspondence.

I haven’t heard anything more from the Vaccine damage Tribunal”.

Then he says,

“I haven’t had a copy of the Meridian TV item”,

so obviously you had made some reference to it, because he says,

“I would be very interested to see a copy if you can organise it some time.

We are all waiting for Andy Wakefield to deliver the goods and I really think that if he can provide the proof he thinks he can it is going to be much easier to win the cases.

I am interested in your comments about the rise in the incidence of mumps. What you say, of course, is absolutely correct.

I don’t think you have been updated on our fact sheet recently and in case it is of interest I enclose a further updated version. You will see that once again the section on autism has been extended. Don’t be deceived by the fact that it may not look quite as long as before. We have reduced the print size”.

Emphasis added.

After an extensive examination by the GMC’s attorneys, the defense was given an opportunity to cross exam:

THE CHAIRMAN: Mrs 12, as I indicated earlier, this is now the opportunity for representative counsel of the three doctors to cross-question you if they feel it appropriate. Are you happy to continue?
A Yes, that is fine.

THE CHAIRMAN: At any stage if you think that you need a little break, just give me a little hint and I am sure that the Panel will be quite sympathetic. Mr Coonan.

MR COONAN: Sir, I have no questions, thank you.

Mr. Coonan would be Mr. Wakefield’s attorney. He declined the opportunity to examine the one parent from the Lancet 12 who appeared at the GMC.

Mrs 12 was cross examined by Mr. Miller, attorney for Professor Walker-Smith.

Even as a summary this is long. But at least now people can easily check quotes in context.

Estimating the Prevalence of Autism Spectrum Conditions in Adults: Extending the 2007 Adult Psychiatric Morbidity Survey

1 Feb

You may recall that a couple of years ago a study came out looking at the prevalence of autism in adults in the United Kingdom. They found a prevalence of about 1%, the same as in children.

There’s now a follow up study. The press release is below. The study can be found here. I hope to have the time to go into this in more detail in the next couple of days.

University of Leicester researchers lead on new autism study published today
Britain’s first adult autism survey reveals previously ‘invisible’ group with autism

New research on autism in adults has shown that adults with a more severe learning disability have a greater likelihood of having autism.

This group, mostly living in private households, was previously ‘invisible’ in estimates of autism.

Dr Terry Brugha, Professor of Psychiatry at the University of Leicester, led research on behalf of the University for the report Estimating the Prevalence of Autism Spectrum Conditions in Adults: Extending the 2007 Adult Psychiatric Morbidity Survey, which has today been published by the NHS Information Centre.

The report involved a survey of adults from learning disability registers in Leicestershire, Lambeth and Sheffield between August 2010 and April 2011.

Today’s report presents findings from a new study based on a sample of people with learning disabilities living in private households and communal care establishments. The findings are combined with information from the Adult Psychiatric Morbidity Survey (APMS) 2007, previously published by the NHS Information Centre, which included research on autism also led by Dr Brugha.

Dr Brugha, also a consultant psychiatrist working in the NHS with the Leicestershire Partnership NHS Trust, said: “We were surprised by how many adults with moderate to profound learning disability had autism because previous estimates pointed to lower rates in this group. Because they form a very small part of the adult population, when we added these new findings to the rate we had previously found in adults living in private households, and able to take part in our national survey in 2007, the overall percentage of adults in England with autism did not increase significantly over our 2007 estimate of 1%.”

“Our finding that about 60% of men with profound learning disabilities and 43% of women with profound learning disabilities have autism has never been shown previously. It may also seem surprising how many live at home with parents or carers who provide 24 hour care and shoulder a considerable burden: 42% of men and 29% of women with severe learning disabilities living with family members and in other private households have autism. Taken together with the 2007 survey findings this means that most adults with autism live in private households, and before these two surveys they remained largely invisible”.

Dr Brugha added “This new information will be of particular importance for those who plan and provide services to support those with learning disabilities. In March 2010, the Government published a national strategy for autism and guidance for the condition, with the view to improving the quality of services provided to adults with autism in England. Such improvements can only be achieved if the number of people with recognised and unrecognised autism is quantified. The strategy gave special emphasis to the need to train staff who have responsibility for identifying people with autism and their care. It will be vital to repeat such studies in future years in order to make sure that the national strategy is working effectively.”

Sally-Ann Cooper, Professor of Learning Disabilities at the University of Glasgow, who also contributed to the latest study commented: “Until now routine statistics have not been gathered on the numbers of people with learning disabilities who also have autism leaving this as a hidden problem. Our study clearly shows that the more severe to profound an adult’s learning disability is, the more likely they will be found to have autism if actually assessed.”

Mother Jones: Rep. Dan Burton’s Legacy: Lots of Sick Kids

1 Feb

Dan Burton, representative to the U.S. House of Representatives from Indiana announced today he would not seek re-election this year. Mother Jones has an article to mark the end of Dan Burton’s career in congress: Rep. Dan Burton’s Legacy: Lots of Sick Kids. The link says a lot “rep-dan-burton-goodbye-and-good-riddance”.

Stephanie Mencimer of Mother Jones starts out:

So Rep. Dan Burton (R-Ind.) is finally retiring, after two decades in Congress. He’s got a notable record of craziness, having doggedly pursued President Bill Clinton during the Monica Lewinsky scandal while knowing full well he’d had an affair himself and even fathered a child out of wedlock. He famously claimed to have shot up a “head-like object” (likely a melon or a pumpkin) to try to re-create the alleged “murder” of former Clinton deputy White House counsel Vince Foster, who committed suicide. But Burton doesn’t get enough credit for what may be his lasting legacy: helping turn Americans away from life-saving childhood vaccines.

Representative Burton has an autistic grandchild. Mr. Burton is of the belief that vaccines were causal in that autism. If you’ve read David Kirby’s book, “Evidence of Harm, Mercury in Vaccines and the Autism Epidemic: A Medical” you know that Rep. Burton is a major figure in that narrative.

Rep Burton helped promote Andrew Wakefield’s ideas, including a hearing held in 2000. Mr. Wakefield’s testimony is not exactly what I would call accurate. As is now well known, Mr. Wakefield was financially supported by attorneys seeking to prove a link between the MMR vaccine and autism. When Rep. Burton asked him about financial support, here’s how Mr. Wakefield responded:

Mr. Burton. Who funded your study, Dr. Wakefield?
Dr. Wakefield. We did. We have a small charitable
contribution, but—-
Mr. Burton. A charitable organization did; I see.
Dr. Wakefield. We found it a little difficult to get
funding—-

Mr. Burton cut Mr. Wakefield off at this point, addressing another speaker at the hearing. “A charitable contribution” is a rather odd way to describe money from attorneys. Mr. Burton held at least six hearings on vaccines. That is not a problem. However, the evidence was going from weak to strongly against him over the years.

Mr. Burton has thankfully been more quiet on the issue in his recent years in office. Still, I’m with Mother Jones on this. Good Bye and Good Riddance.

Assessment of Studies of Health Outcomes Related to the Recommended Childhood Immunization Schedule

31 Jan

The U.S. Institutes of Medicine (IOM) will hold a meeting to discuss the feasibility of studying health outcomes in vaccinated and unvaccinated children. Health Outcomes Related to the Recommended Childhood Immunization Schedule will be held on February 9.

Activity Description

The IOM will conduct an independent assessment surrounding the feasibility of studying health outcomes in children who were vaccinated according to the CDC recommended schedule and those who were not (e.g. children who were unvaccinated or vaccinated with an alternate schedule). The IOM will review scientific findings and stakeholder concerns related to the safety of the recommended childhood immunization schedule. Further, the IOM will identify potential research approaches, methodologies, and study designs that could inform this question, including an assessment of the potential strengths and limitations of each approach, methodology and design, as well as the financial and ethical feasibility of doing them. A report will be issued in mid-2012 summarizing the IOM’s findings and conclusions.

Here is the draft agenda:

Draft Agenda
11:00-12:00 OPEN SESSION

11:00-11:15 Welcome and Overview
Ada Sue Hinshaw, Ph.D., R.N.
Committee Chair

11:15-11:35 Presentation of the Charge from the National Vaccine Program Office
Bruce Gellin, M.D., M.P.H.
Deputy Assistant Secretary for Health
Director, National Vaccine Program Office, US Department of
Health and Human Services

11:35-12:00 Review of IOM’s Committee to Review Adverse Effects of Vaccines
Ellen Wright Clayton, J.D., M.D.
Chair of the IOM Committee to Review Adverse Effects of
Vaccines
Craig-Weaver Professor of Pediatrics, Vanderbilt University

12:00-1:00 CLOSED SESSION –WORKING LUNCH

1:00-5:00 OPEN SESSION

1:00-1:20 National Vaccine Information Center Perspectives
Barbara Loe Fisher
Co-Founder & President, National Vaccine Information Center

1:20-1:40 Provider Perspectives
Gary Freed, M.D., M.P.H.
Professor, Department of Health Management and Policy,
University of Michigan School of Public Health
Director, Division of General Pediatrics
The Percy and Mary Murphy Professor of Pediatrics and Child
Health Delivery

1:40-2:00 The Use of Clinical Trials for Childhood Vaccines
Susan Ellenberg, Ph.D.
Professor of Biostatistics and Associate Dean for Clinical
Research
Perelman School of Medicine at the University of Pennsylvania

2:00-2:20 Ethical Issues in Clinical Trials
Robert (Skip) Nelson, M.D., Ph.D.
Senior Pediatric Ethicist/Lead Medical Officer, Food and Drug
Administration

2:20-2:40 BREAK

2:40-3:05 National Center for Immunization and Respiratory Diseases (NCIRD)
Centers for Disease Control and Prevention (CDC)
Melinda Wharton M.D., M.P.H.
Deputy Director, NCIRD, CDC
Captain, US Public Health Services

3:05-3:25 Immunization Safety Office (ISO) CDC
Frank DeStefano, M.D., M.P.H.
Director, ISO, CDC

3:25-3:45 Data and Approaches in National and International Immunization Studies
Saad Omer, Ph.D., M.P.H., M.B.B.S
Assistant Professor, Hubert Department of Global Health
Epidemiology, Emory University Rollins School of Public Health
Assistant Professor, Emory Vaccine Center

3:45-4:05 Immune Profiling Research
Chuck Hackett, Ph.D.
Deputy Director, Division of Allergy, Immunology, and
Transplantation
National Institute of Allergy and Infectious Disease

4:05-5:00 OPEN SESSION* — Opportunity for Attendee Comments

5:00 ADJOURN

Joint ASAN-Autism Society Statement on DSM 5

31 Jan

Below is a joint statement by the Autistic Self Advocacy Network and the Autism Society of America on the DSM-5.

Dear Friend,

As two national organizations committed to working to empower the autism and Autistic communities today and into the future, the Autism Society of America and the Autistic Self Advocacy Network issue the following joint statement regarding the definition of Autism Spectrum Disorder within the DSM-5:

The autism spectrum is broad and diverse, including individuals with a wide range of functional needs, strengths and challenges. The DSM-5’s criteria for the new, unified autism spectrum disorder diagnosis must be able to reflect that diversity and range of experience.

Over the course of the last 60 years, the definition of autism has evolved and expanded to reflect growing scientific and societal understanding of the condition. That expansion has resulted in improved societal understanding of the experiences of individuals on the autism spectrum and their family members. It has also led to the development of innovative service-provision, treatment and support strategies whose continued existence is imperative to improving the life experiences of individuals and families. As the DSM-5’s final release approaches and the autism and Autistic communities prepare for a unified diagnosis of ASD encompassing the broad range of different autism experiences, it is important for us to keep a few basic priorities in mind.

One of the key principles of the medical profession has always been, “First, do no harm.” As such, it is essential that the DSM-5’s criteria are structured in such a way as to ensure that those who have or would have qualified for a diagnosis under the DSM-IV maintain access to an ASD diagnosis. Contrary to assertions that ASD is over diagnosed, evidence suggests that the opposite is the case – namely, that racial and ethnic minorities, women and girls, adults and individuals from rural and low-income communities face challenges in accessing diagnosis, even where they clearly fit criteria under the DSM-IV. Furthermore, additional effort is needed to ensure that the criteria for ASD in the DSM-5 are culturally competent and accessible to under-represented groups. Addressing the needs of marginalized communities has been a consistent problem with the DSM-IV.

Individuals receive a diagnosis for a wide variety of reasons. Evidence from research and practice supports the idea that enhancing access to diagnosis can result in substantial improvements in quality of life and more competent forms of service-provision and mental health treatment. This is particularly true for individuals receiving diagnosis later in life, who may have managed to discover coping strategies and other adaptive mechanisms which serve to mask traits of ASD prior to a diagnosis. Frequently, individuals who are diagnosed in adolescence or adulthood report that receiving a diagnosis results in improvements in the provision of existing services and mental health treatment, a conceptual framework that helps explain past experiences, greater self-understanding and informal support as well as an awareness of additional, previously unknown service options.

Some have criticized the idea of maintaining the existing, broad autism spectrum, stating that doing so takes limited resources away from those most in need. We contend that this is a misleading argument – no publicly funded resource is accessible to autistic adults and children solely on the basis of a diagnosis. Furthermore, while the fact that an individual has a diagnosis of autism spectrum disorder does not in and of itself provide access to any type of service-provision or funding, a diagnosis can be a useful contributing factor in assisting those who meet other functional eligibility criteria in accessing necessary supports, reasonable accommodations and legal protections. As such, we encourage the DSM-5 Neurodevelopmental Disorders Working Group to interpret the definition of autism spectrum disorder broadly, so as to ensure that all of those who can benefit from an ASD diagnosis have the ability to do so.

The Autism Society and Autistic Self Advocacy Network encourage other organizations and groups to join with us in forming a national coalition aimed at working on issues related to definition of the autism spectrum within the DSM-5. Community engagement and representation within the DSM-5 process itself is a critical component of ensuring accurate, scientific and research-validated diagnostic criteria. Furthermore, our community must work both before and after the finalization of the DSM-5 to conduct effective outreach and training on how to appropriately identify and diagnose all those on the autism spectrum, regardless of age, background or status in other under-represented groups.

Sincerely,
Ari Ne’eman
President of
Autistic Self Advocacy Network
aneeman@autisticadvocacy.org

Scott Badesch
President of
Autism Society
sbadesch@autism-society.org

Generation Rescue’s tax form 990 for 2010

31 Jan

Generation Rescue’s tax forms (form 990) for 2010 have been made publicly available.

2010 was the second highest year financially for Generation Rescue. Here are their yearly totals:

2006: $318,695
2007: $425,317
2008: $1,185,255
2009: $623,597
2010: $1,078,471

GENERATION RESCUE IS DEDICATED TO RECOVERY FOR CHILDREN WITH AUTISM SPECTRUM DISORDERS BY PROVIDING GUIDANCE AND SUPPORT FOR MEDICAL TREATMENT

The largest expense was for “research”: $307,439. The description is not very detailed:

GR CONTINUES ITS COMMITMENT TO DISCOVERING THE CAUSES OF AUTISM SPECTRUM DISORDERS AS A MEANS OF IMPROVING TREATMENTS AND QUALITY OF LIFE, WHILE WORKING TOWARDS A PREVENTION AND A CURE. ANGELS DONATE THEIR TIME TO ANSWER QUESTIONS, GIVE GUIDANCE AND PROVIDE RESOURCES FOR FAMIILIES STARTING OUT ON THEIR OWN.

More on this later.

Other expenses? Marketing and Awareness, for one: $135,128

MARKETING & AWARENESS
GR IS DEDICATED TO SPREADING AWARENESS AND INFORMATION ABOUT AUTISM TO THE POPULATION AT LARGE, TO ENSURE THE UNDERSTANDING AND SUPPORT FOR THE DISORDER. GR WORKS CLOSELY ON A GRASSROOTS AND NATIONAL LEVEL TO ENGAGE FAMILIES IN THE PROCESS.

Rescue Family Grant Program: $96, 431

GR’S RESCUE FAMILY GRANT PROGRAM PROVIDES AUTISM TREATMENT SUPPORT TO INDIVIDUALS AND FAMILIES AFFECTED BY AUTISM SPECTRUM DISORDERS. GR PROUDLY PROVIDES FAMILIES WITH THIS UNIQUE AUTISM TREATMENT PROGRAM, WHICH MAY NOT OTHERWISE BE COVERED BY SCHOOL DISTRICTS, COUNTY PROGRAMS, INSURANCE OR OTHER GRANT-GENERATING ENTITIES.

Other program services: $328,660.

You may recall that this year Generation Rescue teamed up with AutismOne to produce the AutismOne conference. They made the conference “free” to attendees (with a $25 fee). Generation Rescue put out $76,467 to support the conference. Someone is obviously paying (exhibitors? Speakers?), Generation Rescue made $38,883 on the conference. Compare this with their comedy event where they spent $98,422 to make $15,327. Autism One is a much better deal for them.

Remember those research expenses mentioned above? I assume that this charge is included there: “Strategic Autism Initiative” got $100,000 “for researching the causes of autism:”. What’s the Strategic Autism Initiative? Simply put: Andrew Wakefield. That’s the organization he created after leaving Thoughtful House. Been wondering how Andrew Wakefield is paying the bills since losing that job? Well this gives you a big clue.

(For comparison, their “Family Grant” program received less money: $93,122 for 111 recipients.)

Under compensated board members, officers, etc., they list:

Jenny McCarthy, President, Director (10 hours/week, no pay)
Jonathan B Handley, Director (10 hours/week, no pay)
Lisa Handley, Director (10 hours/week, no pay)
and
Candace MacDonald, Executive Director (40 hours/week, $128,613)

Total in salaries and other compensation $260,569. (in 2009, this was $364,686)

Generation Rescue’s mission statement for 2010?

GENERATION RESCUE (GR) IS DEDICATED TO RECOVERY FOR CHILDREN WITH AUTISM SPECTRUM DISORDERS BY PROVIDING GUIDANCE AND SUPPORT FOR MEDICAL TREATMENT TO DIRECTLY IMPROVE THE CHILD’S QUALITY OF LIFE FOR ALL FAMILIES IN NEED

This has been evolving.

2009:

GENERATION RESCUE,INC IS AN INTERNATIONAL MOVEMENT 0F SCIENTISTS AND PHYSICIANS RESEARCHING THE CAUSES AND TREATMENTS FOR AUTISM, ADHD, AND CHRONIC ILLNESS WHILE PARENT-VOLUNTEERS MENTOR THOUSAND OF FAMILIES IN RECOVERING THEIR CHILDREN

2008:

CONTINUING RESEARCH, EDUCATION AND DISSEMINATION OF INFORMATION TO THE GENERAL PUBLIC AND MEDICAL PROFESSIONAL RELATING TO MERCURY TOXICITY AND ITS EFFECT ON CHILD DEVELOPMENT

(Generation started out as a major proponent of the idea that autism was a misdiagnosis for mercury poisoning)

One might notice that the “research” budget is significantly higher than that allocated to Mr. Wakefield’s organization. They allocate $307,439 for research. Compare this to 2009, when their support of research appears to be a single entry of $30,000 given to the HEAL Foundation.

$100,000 is going to Mr. Wakefield. Where is the other $208,439 going? Generation Rescue at one point felt they could do a vaccinated/unvaccinated study for $809,721. At that time it was proposed as a 2 year study. Is it in the works?

Does MMR vaccine travel in time?

27 Jan

The news that the diagnosis of autism may be brought forward is primarily of importance because it may help identify children who will require specialised support. However, it is also interesting because it breaks the co-incidental temporal association that has been part of the reason the MMR vaccine-autism hypothesis gained traction. Since the behavioural cues for autism can’t be picked up well until after one year of age, parental concern about their child being different and autism diagnoses rose after administration of the MMR vaccine. This had unfortunate consequences for the perception of MMR vaccine’s safety.

Elsabbagh et al examined “brainwaves” (event-related potentials – ERPS) of babies with a familial risk of autism when presented with pictures of faces either gazing at the baby or away from the baby. Those children who went on to develop autism diagnoses had differing ERPs.

Although the evidence of fraud, failure to find epidemiological evidence to back-up Wakefield’s claims, and failure to find measles RNA that would have supported Wakefield’s work were enough to bury any scientific case for the MMR Vaccine-autism hypothesis, the fact that autism may now be diagnosed before the MMR vaccine lays a nice wreath on top.

Not all parents whose children developed autism blamed MMR vaccine, some parents were already aware of a “difference” about their child before MMR vaccine, but it is understandable how some parents would have made the connection with the vaccine. After all, it is a key part of how clinicians make connections between a drug and adverse event, and is a strong element of assessing causality (see Bradford-Hill criteria).

The causation in the MMR vaccine debacle was neatly illustrated in an article from Prescriber [Registration required] written by Paula McDonald (a former Consultant in Communicable Disease Control).

Some of these syllogisms may be plausible to some patients

Aristotle’s concept of syllogisms, says if certain prepositions are met, something distinct will arise from necessity. However, he also noted false syllogisms (In the UK we have an entire publication devoted to generating them, called the Daily Mail). McDonald’s figure illustrates the usual example of the horse being classified as a cat, along with the example of teddy bears and MMR vaccine causing autism.

You could replace the teddy bears with Peppa the Pig, or some other Greenfieldian scare. However, it sounds more convincing with vaccines, afterall you are introducing foreign material into a healthy child (and vaccines do cause adverse events sometimes).

Convincing people a false syllogism is wrong is a lot harder, than pointing out that A could not have caused B, because B arose months before A happened. Temporal associations are how we make sense of the everyday world. We don’t blame tripping up on a kerb on the beer we were going to have in the pub later that night.

Barring a Skynet conspiracy to send Terminators with MMR vaccine back in time to cause autism, this looks like a useful point to make to parents concerned about the risk of autism with MMR vaccine. Quite what the anti-vaccination groups will do, like the UK JABS cult, is interesting. Perhaps they will move to attack other vaccines given earlier, such as meningitis C or diptheria? Alternatively, they may look to the misapplication of physics, perhaps taking comfort in the news that neutrinos may have travelled faster than light, as their comrades-in-arms the homeopaths did.

Cross posted at Black Triangle.

Infant Neural Sensitivity to Dynamic Eye Gaze Is Associated with Later Emerging Autism

27 Jan

A study out today is causing much discussion. Infant Neural Sensitivity to Dynamic Eye Gaze Is Associated with Later Emerging Autism is by researchers from the UK, Canada and Australia:

1 Centre for Brain and Cognitive Development, Birkbeck College, University of London, London WC1E 7HX, UK
2 Department of Psychiatry, McGill University, Montreal, Quebec H3A 1A1, Canada
3 Olga Tennison Autism Research Centre, School of Psychological Science, La Trobe University, Bundoora, Victoria 3086, Australia
4 Centre for Research in Autism and Education, Institute of Education, University of London, London WC1H 0AL, UK
5 Institute of Psychiatry, King’s College London, London SE5 8AF, UK
6 Autism Research Centre, University of Cambridge, Cambridge CB2 8AH, UK

In Study finds early signs of autism in baby brains, Fox News and Reuters report the study:

Children who develop autism already show signs of different brain responses in their first year of life, scientists said on Thursday in a study that may in the future help doctors diagnose the disorder earlier.

British researchers studied 104 babies at 6 to 10 months and then again at 3-years-old, and found that those who went on to develop autism had unusual patterns of brain activity in response to eye contact with another person.

The BBC in their story Autism: Brainwaves ‘show risk from age of six months’, notes:

Prof Johnson said: “It is important to note it is not a 100% predictor. We had babies who flagged up warning signs who did not develop autism.”

There were also babies who did develop autism who had low-risk brainwaves. The test would need to be more accurate before it was used routinely.

And this is a big reason I’d like to see the actual study. How accurate was this measure?

I would point out that there are children who show very clear behavioral signs of autism before age 1, something which the news stories don’t seem to be capturing.

Autistica, who helped fund the research, included this in their comment on the study:

In their first year of life, babies who will go on to develop autism already show different brain responses when someone looks at them or away. Although the researchers are careful to say that the study is only a first step toward earlier diagnosis, the findings do suggest that direct brain measures might help to predict the future development of autism symptoms in infants as young as six months.

“Our findings demonstrate for the first time that direct measures of brain functioning during the first year of life associate with a later diagnosis of autism – well before the emergence of behavioural symptoms,” said Professor Mark Johnson, MRC Scientist and head of the Centre for Brain and Cognitive Development at Birkbeck, University of London.

“Our findings demonstrate for the first time that direct measures of brain functioning during the first year of life associate with a later diagnosis of autism – well before the emergence of behavioural symptoms,” said Professor Mark Johnson, MRC Scientist and head of the Centre for Brain and Cognitive Development at Birkbeck, University of London.

I have not seen nor read the paper yet. The abstract is available and they give “highlights” of the study:

Highlights
Family risk for autism confers subtle differences in brain function in infants
Atypical ERPs in infants when viewing eye gaze data associates with later autism diagnosis
Robust prediction of autism will require an understanding of risk and protective factors

and the summary:

Summary

Autism spectrum disorders (henceforth autism) are diagnosed in around 1% of the population [1]. Familial liability confers risk for a broad spectrum of difficulties including the broader autism phenotype (BAP) [2,3]. There are currently no reliable predictors of autism in infancy, but characteristic behaviors emerge during the second year, enabling diagnosis after this age [4,5]. Because indicators of brain functioning may be sensitive predictors, and atypical eye contact is characteristic of the syndrome [6,7,8,9] and the BAP [10,11], we examined whether neural sensitivity to eye gaze during infancy is associated with later autism outcomes [12,13]. We undertook a prospective longitudinal study of infants with and without familial risk for autism. At 6–10 months, we recorded infants’ event-related potentials (ERPs) in response to viewing faces with eye gaze directed toward versus away from the infant [14]. Longitudinal analyses showed that characteristics of ERP components evoked in response to dynamic eye gaze shifts during infancy were associated with autism diagnosed at 36 months. ERP responses to eye gaze may help characterize developmental processes that lead to later emerging autism. Findings also elucidate the mechanisms driving the development of the social brain in infancy.

Here is Figure 1 from the article, which I admit in this version is too small to be very illustrative:

But the figure caption gives some more details about the actual study.

Figure 1. Association between Infant ERPs in Response to Eye Gaze and Autism Outcomes(A) Participating families first visited the lab when their infants were 6–10 months of age. Electrophysiological recording was done during this visit. Infants were prepared for the EEG session.(B) Electrophysiological response to gaze shifts over occipitotemporal channels.(C) Around 2 and 3 years of age, the same infants were tested by an independent team using several measures including the ADOS, a semistructured observational measure of autism-related characteristics. Based on information from all visits, combined with expert clinical judgment, infants in the at-risk group were classified as having ASD or not.(D) Controlling for age at the first visit, significant condition × risk-group interactions were observed for the amplitude of the P400 [F(1,92) = 6.7, p = 0.01]; planned post hoc tests focused on within-group difference between response to direct versus averted gaze controlling for age at baseline and developmental level at 36 months. Estimated mean differences between responses to gaze toward versus away are displayed for each group (standard error bars are displayed). Findings suggest that differentiation between gaze toward versus away was reliable in the both the control group (p < 0.001) and the at-risk without ASD group (p = 0.04). By contrast, the at-risk group that developed ASD showed no differentiation (p = 0.67) nor did the subgroup that developed early and persistent symptoms (p = 0.27). Findings from static face and face versus noise contrasts are presented in Figure S1 and Table S1.

The DSM 5 and autism

24 Jan

A recent article in the New York Times has sparked a renewed heated discussion on the topic of Autism and how the DSM 5 may change how it is diagnosed. The Times article, New Definition of Autism Will Exclude Many, Study Suggests, has already been discussed here at Left Brain/Right Brain.

At that time there was a paragraph from the Times which was troubling:

The changes would narrow the diagnosis so much that it could effectively end the autism surge, said Dr. Fred R. Volkmar, director of the Child Study Center at the Yale School of Medicine and an author of the new analysis of the proposal. “We would nip it in the bud.”

Unfortunately we don’t have the full quote from Prof. Volkmar. The whole thing seemed a little strange. As noted on the Embargo Watch blog, this was based on a talk given at a small conference and a single slide in that talk.
In my opinion, it looks like the Times ran with a story that they shouldn’t have, and may have made it appear more troubling than it really is.

Troubling in this respect: the point of the DSM in my opinion is not to try to manage one way or another the number of identified autistics. It should be to accurately identify autistics.

A later article in the Times had this paragraph, which is again bothersome:

“We have to make sure not everybody who is a little odd gets a diagnosis of autism or Asperger disorder,” said Dr. David J. Kupfer, a professor of psychiatry at the University of Pittsburgh and chairman of the task force making the revisions, which are still subject to change. “It involves a use of treatment resources. It becomes a cost issue.”

I don’t see it as the place of the DSM 5 committee to either manage the “surge” in autism diagnoses or to manage a “cost issue”. And while the Times may be overplaying this, we need to focus on the fact that accuracy is far more important than social engineering here. Frankly I don’t think that everyone who is a “a little odd gets a diagnosis of autism or Asperger disorder” now. If there is a problem with over diagnosis, I’d like to see it backed up with data. Especially in the adult population, which is likely very much under diagnosed.

There are two valuable outcomes to accurately diagnosing autism. First and foremost is in providing services. In this respect it is better to cast the net a little wide rather than miss people who are in need. I don’t think we are there yet. As of now there may be an under count of autistic students based on socioeconomic status:

If the SES gradient found in this study is due only to ascertainment bias, this would imply that there are significant SES disparities in access to diagnostic and other services for children with autism in communities across the United States. It also would imply that the current estimate of ASD prevalence might be substantially undercounted, with children of low and medium SES being under-identified and underserved relative to those with high SES.

Girls may be identified later than boys:

Girls, especially those without cognitive impairment, may be formally identified at a later age than boys. This may delay referral for early intervention. Community education efforts should alert clinicians and parents to the potential of ASDs in boys and girls.

Autism is underdiagnosed in racial/ethnic minorities.

Significant racial/ethnic disparities exist in the recognition of ASD. For some children in some racial/ethnic groups, the presence of intellectual disability may affect professionals’ further assessment of developmental delay. Our findings suggest the need for continued professional education related to the heterogeneity of the presentation of ASD.

And this ignores the huge elephant in the room: the fact that autism is under diagnosed in adults. When an autism prevalence study was conducted in the UK, adults identified in the diagnostic assessment part of the study were previously undiagnosed. Studies in the U.S. have identified undiagnosed autistics within institutions–a place where the individuals are under close medical supervision. Is it really a stretch to believe that the low prevalence in adults involves a lot of under counting?

There is the medical diagnosis of autism and there are legal definitions of autism. Consider California. The California Department of Developmental Services has as part of its charter providing services to autistics within the state. All well and good, but California used the same rules from about 1985 to about 2007. They waited over 10 years after the DSM-IV was implemented to revise their rules. One result of this was that individuals with autism spectrum disorder diagnoses such as PDD-NOS and Asperger syndrome were considered to be not autistic. They didn’t have “autism” as their diagnosis.

In California schools, autism is not defined by the DSM or any other medical diagnosis. It is defined legally:

(a) For purposes of this chapter, a “pupil with autism” is
a pupil who exhibits autistic-like behaviors, including, but not
limited to, any of the following behaviors, or any combination
thereof:
(1) An inability to use oral language for appropriate
communication.
(2) A history of extreme withdrawal or of relating to people
inappropriately, and continued impairment in social interaction from
infancy through early childhood.
(3) An obsession to maintain sameness.
(4) Extreme preoccupation with objects, inappropriate use of
objects, or both.
(5) Extreme resistance to controls.
(6) A display of peculiar motoric mannerisms and motility
patterns.
(7) Self-stimulating, ritualistic behavior.
(b) The definition of “pupil with autism” in subdivision (a) shall
not apply for purposes of the determination of eligibility for
services pursuant to the Lanterman Developmental Disabilities
Services Act (Division 4.5 (commencing with Section 4500) of the
Welfare and Institutions Code).

An individual without an autism (or ASD) diagnosis can be considered a “pupil with autism” (although this can be a battle). Likewise, an individual with an autism (or ASD) diagnosis can be not considered a “pupil with autism). Changing the DSM criteria will not make a difference in the educational definition. (edit to add–should have stressed “at first”. The educational definition will likely be reviewed and possibly changed after the DSM 5 is published)

An autism diagnosis is not a key to services, which is what the quotes from Professors Volkmar and Kupfer suggest (again, I think the Times has overplayed this). An autism diagnosis can often be, however, an important first step. Again in a world where legal definitions define developmental disability, having the right diagnosis can be the difference between starting the fight and being knocked out in the first round. In California the CDDS serves individuals with:

mental retardation, cerebral palsy, epilepsy, and autism. This term shall also include disabling conditions found to be closely related to mental retardation or to require treatment similar to that required for individuals with mental retardation, but shall not include other handicapping conditions that are solely physical in nature.

That last category is supposed to leave the door open to other developmental disabilities, but in practice it is a difficult argument to make. Even autism is not a key. I recall one autistic who advocated for others in the community telling me of someone who rode a bike to the DDS office for the interview. He was told he was denied because he could ride a bike. Sure its an anecdote. But at this point we don’t have a lot of data on adult autistics. And that should be a warning sign that we are under serving a big segment of the population.

And we are not talking about those “mildly affected”. I can speak from experience that the CDDS has tried to keep out one individual, my kid, someone who *clearly* meets multiple criteria.

With all due respect, I see that the DSM 5 committee holds a public trust. We need diagnostic criteria that are accurate, not designed by committee to solve problems like “cost” and a “surge” in autism.

With all this said, this latest surge in the discussion was sparked by a talk given at a conference. It is preliminary and there is a lager study in the works. There’s a reason why work like this is supposed to stay out of the public eye until complete. It appears that the author himself, Prof. Volkmar, broke the embargo on his own work, sort of. This is discussed at Embargo Watch as Study about potential effects of new autism definition spotlights the Ingelfinger Rule. Prof. Volkmar gave a single slide at a small conference and had the permission of his editor to do so. The Times picked this up and has now sparked a great fear of the DSM 5 within a large segment of the online autism communities.

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