Autism ‘levelling off’?

3 Nov

A new paper in Pediatrics asks:

…whether the increasing prevalence of autism, on the basis of educational data, in Wisconsin between 2002 and 2008 was uniform in all school districts or was greatest in districts with lower baseline (2002) prevalence.

In other words, was there a greater increase in the school districts where the prevalence of autism had previously been lowest? In this ‘catch up’ scenario, there was _still_ no epidemic of autism just a gradual levelling out as the school districts with lower prevalence in 2002 ‘caught up’ with the school districts with the higher prevalence in 2002.

In order to answer this question, the authors

…grouped [the districts] into 8 categories (octiles) according to their baseline prevalence, and prevalence trends were plotted according to octile.

The results were as expected – whilst the _overall_ prevalence increased from 4.9 cases per thousand to 9 cases per thousand, in each different octile, the results were not uniform. If an octile already had near 9 cases per thousand then they increased by a very small amount. If an octile was closer to the 4.9 starting point then they increased over the same amount of time (2002 – 2008) by a much larger amount until both reached the same amount – roughly 1%.

As we know from other studies, a prevalence of 1% seems to be emerging from differing areas of the world as well as different areas of the US. As John Harrington states in a companion commentary, this study shows

There seem to be no “hot spots” or high-risk areas with some ominous environmental toxin that can be postulated; it is more likely that educational services for autism were better coordinated in 1 area versus another.

Autism services are playing catch up in the school system in the US according to this paper. Thats all. Still no epidemic.

Change.org ask ‘Did the Anti-Vaccination Movement Cause the Whooping Cough Epidemic?’

2 Nov

A great post over at Change.org asks the question and delivers the right answer – yes, yes they did. It also targets the right org as being responsible – Barbara Loe Fischer’s anti-vaccine group NVIC.

Whooping cough is making a comeback. This summer, the highly contagious upper respiratory infection struck more than 6,000 people in California — the most cases since 1950. Ten people died, all infants.

…

The stubborn belief that vaccines are harmful to a child’s health show just how damaging — even deadly–unscientific movements like the NVIC’s are. And how wrong.

…

…not vaccinating children erodes the “wall of immunity” that keeps all kids safe from life-threatening diseases. When infections have fewer potential hosts, there is less of a chance that those infections will be able to spread from child to child. When kids are vulnerable to nasty germs — because their parents don’t immunize them — they put their friends and classmates at risk, too.

Change.org have a petition up to deliver the untasty truth to NVIC – it caters to non-US residents from all over the world. Please sign it, tweet it or retweet this post, Facebook it, blog it and email it. These people need to be held accountable for their actions.

Autistics Spoke, and you listened

1 Nov

Today is Autistics Speaking Day. Julian Frost, blogger and frequent commenter here on LBRB blogged the day as Autistics Spoke, and you listened at his “home” at africanjungle.iblog.co.za. Concerned that some people can’t see iBlog, he reposted it on his new blog at WordPress.com

I thought, hey, LeftBrainRightBrain may be visible to people who might not have access to iBlog. Besides, it is a much more fitting post than anything I can write today.

Here is his post:

Happy Autistics Speaking Day! There is a saying that if you’ve met one Autistic, you’ve met one Autistic. In the spirit of this saying, and of the Autistics Speaking Event, I have decided to describe a number of things about myself for your interest.

  • I can be up, shaved, face washed, dressed, bed made, breakfast eaten and out the door in under 40 minutes from my alarm going off.
  • My stim is pacing, and I once walked 5km to get an ice cream.
  • I find it far easier to communicate through the written word than through speech. This is because the written word gives me the time I need to organise my thoughts properly.
  • I recycle my glass, metal, paper and most of my plastic. I also leave my geyser switched off for all but a few hours each day to save electricity.
  • I’m a reader and commentator at my church.
  • My blood type is O+; I donate blood; in 2009 I received a medal for reaching 50 donations; and less than 36 hours ago, I went and donated.
  • I am afraid of heights, to the point that if I even dream I’m up a tall building I start to panic.
  • I’m an animal lover, and I own a fishtank with at least 13 fish.
  • I will never kill a spider, not even a dangerous one, and I’ve lost count of the number of sac spiders I’ve thrown out of my flat.
  • I am brilliant at Algebra, but terrible at Euclidean Geometry.
  • I’m a Software Test Analyst, and I learnt more about computers in the first two years of my job than in my entire life up till then.
  • My dream job is to make documentaries, and if things had been different I’d probably be a Forensic Auditor.
  • I’m an ardent bibliophile.
  • As a child, my favourite author was Roald Dahl, and I still think that Matilda is the finest children’s book ever written. My favourite author as an adult is Terry Pratchett, author of the Discworld Series.
  • I will never again read Dale Brown, Guy Bellamy, or Kathy Lette.
  • I think Red Dwarf is the funniest television show ever.
  • I find Reality TV boooorrrrriiiiinnnngggg!
  • As a general rule, I dislike musicals, and I enjoyed “Mamma Mia!“
  • My three favourite songs of all time are: “Bright Eyes” by Art Garfunkel; “I don’t want to wait” by Paula Cole; and “Sacrifice” by Elton John.
  • I can eat almost any foodstuff apart from Tofu – I can’t digest it and it gives me an upset stomach.
  • I’m sensitive to salt. As a child, Marmite would burn the skin around my lips, and I found bacon so salty I couldn’t eat it.

    • Last month, some organisations proposed a 24 hour Communication Shutdown to start on November 1st in support of Autistic people. The idea was roundly condemned by autistic bloggers, who pointed out that Social Networking was a boon to many autistics. In response, Corina Becker and Kathryn Bjornstad created the event Autistics Speaking Day on Facebook. I am one of the bloggers who joined.

    We spoke. Thank you for listening to us.

    Catch me on Facebook November 1

    1 Nov

    Strange post title, eh? If you want the details on why I will be returning to Facebook after a long absence I refer you to Corina Becker’s blog.

    Preparing to be loud.

    Real Communication Shutdown

    and

    Autistics Speaking Day

    A brief blurb from “Real Communication Shutdown”

    On November 1, there is an Autism awareness campaign called Communitcation Shutdown, whereas people are encouraged to stay off Twitter and Facebook for the day in order to promote an awareness of the communication difficulties that Autistics face.

    There are a lot of groups from many countries behind the Communications Shutdown. One is a charity I recently decided to support.

    Wakefield’s callous introduction

    28 Oct

    Below is a section of Andrew Wakefield’s book, “Callous Disregard”. This section is available as part of the free sample of the book. It is Mr. Wakefield’s semi-fictionalized account of a mother’s murder/suicide. A news account can be found here.

    Another north-easterly wind insinuated its
    futile energies between the massive brick
    piers of Hounds Ghyll viaduct. Although the
    wind endured, the earlier downpour had
    turned to a light drizzle – light for County
    Durham, in the far north of England – as
    their journey came to an end.

    As if for the first time, Mark seemed
    attuned to his mother’s sense of purpose
    and he offered no resistance. He did not
    scream, or fight, or hit himself in the face;
    he did not bite his scarred and scabby arms
    or suddenly collapse to the ground as if
    invisible guy-ropes could no longer hold
    him. Instead, entranced by the raindrops
    and in awe of the viaduct’s ordered
    brickwork, he mouthed in silent wonder at
    it all. At the midpoint of the viaduct she
    turned to the north, the deep valley before
    her – in places its walls sheer, glistening
    black, cut by relentless waters that were
    now barely visible in the fading light far,
    far below. Mark looked up into his mother’s
    face; beyond its years, alone, harassed,
    pursued, and he understood her
    unhappiness. He loved her, although he had
    no way – no wiring – that allowed him to
    express this.

    With the aid of some old timbers she
    helped him onto the parapet, her grip so
    firm that it hurt them both. This was the
    hardest part, the lichened stone wet and
    perilous, her fear of heights. Standing there
    at last, against the wind and against the
    world, he looked at her and she at him.
    “No,” she thought, “this is the hardest part.”
    Without a word, without another thought
    she stepped into oblivion, her most precious
    possession taken with her, to rank in death
    with Egyptian queens. They were not equal
    to the wind and in one final effort it gusted
    into them, threatening to smash the
    waif-like Mark into the merciless viaduct.
    She knew. She was ready. Falling ever faster,
    she pulled him to her, love and instinct
    keeping him safe.

    At the time I read this I thought it could very well be entirely fiction. Not that I think that such a killing/suicide couldn’t happen. The recount, in my opinion, well, let’s just say that I sincerely hope that Mr. Wakefield never attempts to fictionalize my life or that of my family.

    News accounts around the time of the event describe Ms. Rogan as a devoted mother who was growing increasingly afraid that she might lose her child. Not exactly the image presented above.

    Other than a few facts, much of what happened on the viaduct is unknown. I can find no account of whether Mark had “scarred and scabby arms”. One description of him by a neighbor stated, ‘Mark was a beautiful little boy. To look at him, nobody would have known he was suffering any illness.’

    What really stands out in Mr. Wakefield’s account, at least to me, is this phrase: “He loved her, although he had no way – no wiring – that allowed him to express this.”

    I wonder how, after some 14 years working around autistic children, Mr. Wakefield could have written that. Not just in this case, where the police were quoted as describing the family as having “a very close and loving relationship between a mother and son”.

    Detective Superintendent Harry Stephenson of Durham Constabulary said the force’s inquiries indicated “a very close and loving relationship between a mother and son”. He said: “This is an appalling tragedy and one that has been very traumatic to deal with even for some very experienced police officers. It would seem Miss Rogan was finding it difficult to cope with her personal circumstances but despite all that she seemed devoted to her son and prepared to do anything for him.

    Beyond that news account, how could Mr. Wakefield write that a child had no wiring that allowed him to express his love for his mother? That sort of description is something to fight against, not something an “advocate” should be making.

    Callous Disregard. Mr. Wakefield chose that title from one of the charges proven against him by the General Medical Council.

    Stakeholder meeting October 29: Study of Health Outcomes in Children with ASD and Their Families

    26 Oct

    The United States National Institute of Mental Health has called a meeting to discuss a study on health outcomes on children with ASD and their families. The meeting will also be a chance for community input.

    I don’t see an easy way to provide input in advance of the meeting.

    There are many topics I can think of for input, but a big piece of information would be to question why this is limited to children with ASD?

    Meeting Announcement

    Study of Health Outcomes in Children with ASD and Their Families – Stakeholders’ Meeting

    October 29, 2010
    NIH Neuroscience Center
    6001 Executive Blvd.
    Conference Room C
    Rockville, MD 20852

    Sponsored by:

    National Institute of Mental Health (NIMH)

    NIMH recently awarded a two-year contract to The Lewin Group to conduct a study of health outcomes in children with autism spectrum disorders (ASD) and their families. The objective of this study is to advance our understanding of ASD, including variables related to diagnosis, health conditions, and health care outcomes, using existing administrative data.

    NIMH will host an informational stakeholders’ meeting, inviting participation from individuals with ASD, parents of children with ASD, community care providers, ASD researchers, and patient advocates. The Health Outcomes research team will provide an overview of the goals, objectives, and methods of the study. The meeting is also a venue for input from the community about the particular health issues that are of the greatest concern, as well as ASD-specific challenges or complications related to health care service provision and utilization

    The meeting will be open to the public, and will be held on October 29, 2010, 2:00pm to 4:00pm EDT at the NIH Neuroscience Center. Participation by webinar is also possible. To register for in-person attendance at the meeting, or for webinar participation, please go to: http://dgimeetings.cvent.com/d/ydq5rc/4W .

    It seems likely that this study will address questions such as whether there is a higher incidence of gastrointestinal problems in autistics, and how GI issues evolve with time in those kids who have it. I would expect attention on questions such as whether autistic kids are more prone to infections and/or get more antibiotics, how medicated these kids are, the incidence of epilepsy, the incidence of apraxia, and how these conditions progress with time.

    I hope a good method is made for input for this meeting, other than attendance.

    A correction

    23 Oct

    A commenter noted a mistake I made in a recent post, Mental health problems in youths committed to juvenile institutions: prevalences and treatment needs. As noted in the post, I assumed that “coercive institutional care” was a term for criminal incarceration. This assumption was incorrect and I apologize for the error.

    Reading Age of Autism Part 6 – everything old is new again

    21 Oct

    If I had to take a guess I’d say Part I of Age of Autism was written primarily by Dan Olmsted and (so far) Part II is written primarily by Mark Blaxill. Why? Well, Part I is well written bullshit with a decent narrative flow and is full of new (if wrong) ideas. Part II has so far regurgitated the Amish and Somali episodes and I’m in the middle right now of a really dragging account of how Andrew Wakefield got into the game during which I have actually groaned aloud twice and had to put down a few times and watch something more intelligent on TV – something like When Stunts Go Bad for example. A decent writer Mark Blaxill is not.

    Part II is also very much more heavy on the out-and-out anti-vaccination rhetoric and if I want to give a dispassionate, honest review I’d have to say that the differences between Part’s I & II are more than glaringly obvious – they’re more obvious than a fluorescent painted whore in a Kansas Church. Its a shame really as I have a penchant for well put together bullshit and Part I was exactly that. Part II is badly constructed bullshit. Imagine a shanty town constructed next to St. Paul’s Cathedral and thats what Parts I & II of Age of Autism stand together like.

    So everything old is new again, its like taking a trip back in time as we see Simon Murch et al get introduced and the concept of Crohn’s Disease being marketed as vaccine caused being touted around as a viable hypothesis (I’m not up to the MMR/autism thing yet).

    Now don’t get me wrong I’ve nothing against a trip down memory lane but all the hallmarks of a bad writer and worse editing are here aplenty and its really not much fun reading about how Simon Murch is the leading etc etc. I’m sure he is – in fact I _know_ he is but I can’t help but imagine the uninvested reader would find this focussing on frankly dull fact as exactly that – dull.

    So basically same old same old so far. I’m moving house soon and won’t have web access for a week (eek!) but I’ll be reading and note taking don’t you worry. To be continued.

    IACC meeting tomorrow

    20 Oct

    The Interagency Autism Coordinating Committee (IACC) is holding a regular meeting tomorrow. The announcement is below.

    The IACC creates the “Strategic Plan” which guides autism research efforts in the United States. Primarily, the Plan is for use by U.S. governmental groups, but there is input from major private sources of autism research funding as well.

    The meeting will be webcast at http://videocast.nih.gov/, and a coference call listen-only line will be available at:

    USA/Canada Phone Number: 888-577-8995
    Access code: 1991506

    The IACC had a “Request for Input” (RFI), a call for public comments. Those comments are online here.

    Interagency Autism Coordinating Committee (IACC) Full Committee Meeting

    Please join us for an IACC Full Committee meeting that will take place on Friday, October 22, 2010 from 10:00 a.m. to 5:30 p.m. ET in Bethesda, MD. Onsite registration will begin at 9:00a.m.

    Agenda: Invited speakers will give presentations on various aspects of autism spectrum disorder research and services and the IACC will discuss plans for the annual update of the IACC Strategic Plan for Autism Spectrum Disorder Research. Speakers include: Dr. Alexa Posny, Dr. Richard Frank, Ms. Wendy Fournier, Ms. Lori McIlwain and Dr. Kevin Pelphrey. The full agenda is available online at: http://iacc.hhs.gov/events/.

    Meeting location:
    The National Institutes of NIH, Main Campus – Google map imageMap and Directions

    The William H. Natcher Conference Center

    45 Center Drive

    Conference Rooms E1/E2
    Bethesda, Maryland 20892

    The meeting will be open to the public and pre-registration is recommended. Seating will be limited to the room capacity and seats will be on a first come, first served basis, with expedited check-in for those who are pre-registered.

    The meeting will be remotely accessible by videocast (http://videocast.nih.gov/) and conference call. Members of the public who participate using the conference call phone number will be able to listen to the meeting, but will not be heard.

    Conference Call Access
    USA/Canada Phone Number: 888-577-8995
    Access code: 1991506

    Individuals who participate using this service and who need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request to the contact person listed above at least seven days prior to the meeting. If you experience any technical problems with the conference call, please-mail IACCTechSupport@acclaroresearch.com.

    Please visit the IACC Events page for the latest information about the meeting, including registration, remote access information, the agenda, public comment instructions and information about other upcoming IACC events.

    Contact Person for this meeting is:

    Ms. Lina Perez
    Office of Autism Research Coordination
    National Institute of Mental Health, NIH
    6001 Executive Boulevard, NSC
    Room 8185a
    Rockville, MD 20852
    Phone: 301-443-6040
    E-mail: IACCpublicinquiries@mail.nih.gov

    The agenda is online, and below.

    Time Event
    9:00 a.m. Onsite Registration Desk Opens
    10:00 Call to Order and Opening Remarks

    Thomas Insel, M.D.
    Director
    National Institute of Mental Health and Chair, IACC
    10:10 Review and Approval of July 16, 2010 Minutes
    10:15 Alexa Posny, Ph.D.
    Assistant Secretary of Special Education and Rehabilitative Services
    U.S. Department of Education
    10:45 Wandering and Autism: The Need for Data and Resources

    Wendy Fournier
    President
    National Autism Association

    Lori McIIwain
    Board Chair
    National Autism Association
    11:15 The CLASS Act

    Richard Frank, Ph.D.
    Deputy Assistant Secretary for Policy and Evaluation
    Department of Health and Human Services
    11:45 Neural Signatures of Autism

    Kevin Pelphrey, Ph.D.
    Harris Associate Professor of Child Psychiatry
    Child Study Center and Child Neuroscience Lab, Yale University
    12:15 p.m. Lunch
    1:00 Public Comments
    1:30 Meeting Update: NICHD Workshop “Disparities in the Identification of Children with Autism Spectrum Disorders,” August 19, 2010

    Alice Kau, Ph.D.
    Health Scientist Administrator
    Intellectual and Developmental Disabilities Branch, Eunice Kennedy Shriver National Institute of Child Health and Human Development

    Regina Smith James, M.D.
    Director
    Division of Special Populations, Eunice Kennedy Shriver National Institute of Child Health and Human Development
    1:40 Meeting Update: NIEHS Workshop “Autism and the Environment: New Ideas for Advancing the Science,” September 8, 2010

    David Armstrong, Ph.D.
    Senior Investigator, Chief of the Laboratory of Neurobiology
    National Institute of Environmental Health Sciences
    1:50 Meeting Update: “Genetic Risk Factors for Autism Spectrum Disorders: Translating Genetic Discoveries into Diagnostics” Symposium, September 1-2, 2010

    Stephen Scherer, Ph.D.
    Director
    The Centre for Applied Genomics, The Hospital for Sick Children
    Director
    McLaughlin Centre for Molecular Medicine, University of Toronto
    2:00 Meeting Update: Simons Foundation Autism Research Initiative (SFARI) Annual Meeting, September 12-14, 2010

    Gerald Fischbach, M.D.
    Scientific Director
    Simon’s Foundation Autism Research Initiative
    2:10 Research Update: Study of Health Outcomes in Autistic Children and Their Families

    Ann Wagner, Ph.D.
    Chief
    Neurobehavioral Mechanisms of Mental Disorders Branch, National Institute of Mental Health
    2:20 Data Sharing Update: National Database for Autism Research (NDAR)

    Michael Huerta, Ph.D.
    Director
    National Database for Autism Research, National Institute of Mental Health
    2:25 Committee Business

    * Workshop Update – Services Subcommittee

    2:30 Break
    2:45 Committee Business

    * RFI update
    * Portfolio Analysis update
    * Discussion: Updating the Strategic Plan

    5:00 Public Comments Discussion Period
    5:30 Closing Comments and Adjournment

    Recruitment of Wakefield’s study subjects…part 1

    20 Oct

    It has already been well established that Andrew Wakefield was employed by Dawbarns, a lawfirm working with families bringing forward claims of vaccine damage from MMR. Brian Deer made this clear in his investigative reporting starting in 2004.

    Even with that, I must say I was surprised and dismayed to read it again and in much greater detail in the GMC transcripts.

    Mr. Wakefield has asserted over the years that the children for the Lancet study came through “formal channels”. He denied the possibility of litigation bias in a letter to the Lancet.

    Amongst the myriad questions left open is why did a group of parents of disabled children seek out Mr. Wakefield’s team when that team had no particular expertise in autism. Why did families from all over the U.K. and beyond seek out the Royal Free Hospital?

    There is evidence elsewhere in the transcripts of Mr. Wakefield’s direct involvement with recruiting some children for his study, but here we can see how the law firm was actively recruiting children, and that Mr. Wakefield was aware of this.

    For example, here is a section from the transcripts from day 3 of the hearings. This is where Ms. Smith was laying out the case against Mr. Wakefield before testimony was started.

    Let’s first put the following letter into perspective on time. The letter is from August 1996. 1996 was two years before the Lancet paper was published. Earlier that year (in February) Mr. Wakefield had agreed to work as an expert in the MMR litigation. The Fall of 1996 was when the Lancet 12 children were seen at the Royal Free. After this initial group of children, more (over 70 total) children were seen at the Royal Free for suspected Gi complaints and regression.

    Ms. Smith’s comments are in bold. The letter from Mr. Barr are blockquoted.

    If I can just read through it, this is a letter to Dr Wakefield from Mr Barr, the solicitor for the claimants:

    Dear Andy

    I refer to the telephone message left … and I am writing to confirm that at long last the Legal Aid Board has now given authorisation for the pilot study. The limit is £55,00 which does include the setting up costs.

    I think we need to have a meeting about the mechanics of running the study because obviously we both have different roles to play and we also need to make sure that the investigation is as effective as possible both from your point of view and ours.

    As I mentioned on the telephone the only slight cloud is that the Legal Aid Board rather hoped that within the £55,000 you would be able to include preparing us a written over-view in relation to vaccine damage. We have discussed this and I don’t know whether it is impertinent to suggest that you should do it within that funding bracket.

    We also need to make sure that cases are properly selected for the pilot study. Obviously only legally aided children can be included (we have details of cases where legal aid has either not been granted or has not been applied for). Again a meeting might help to sort those out. For all the cases that we have obtained legal aid we have already put in hand obtaining records. In many cases we already have the complete set.

    I assume that for the purposes of the pilot study you would like us to supply a full set of medical records and as much information about the cases as you can get hold of.

    Then there is reference to two of the vaccine support groups who were concerned about a forthcoming MMR campaign, and:

    “When we meet I would like to discuss with you and perhaps engage in further correspondence with Dr Salisbury/The Committee on Safety of Medicines”,

    and it then goes into some details and requests information about the vaccine trials.

    That letter is followed on in terms of tracing the story through. That is in August 1996 and in September 1996 Dr Wakefield is referred to in another of the newsletters that I have already gone to, again produced by the solicitors in the MMR litigation and again sent to Mrs 12. That is at page 189.

    There is so much in this letter of interest, but I will pull out one fact: Mr. Barr was sending newsletters out informing people about the work starting at the Royal Free, including “Mrs 12”, the mother of child 12 of the Lancet study.

    There was certainly an effort to recruit children to Mr. Wakefield’s team, and Mr. Wakefield was aware of this.

    Mr. Wakefield has asserted that none of the children in the Lancet study were involved in litigation at the time of that research. I do not know what criteria Mr. Wakefield uses for “involved in litigation”, but it is clear that at least one (and from other evidence it appears more like 4 or five) of the Lancet 12 were working with Mr. Barr and his lawfirm at Dawbarns at the time of the study.

    Ms. Smith also discussed a September 1996 newsletter from Dawbarns. This was at the same time that Mr. Wakefield was applying for ethical approval for his study at the Royal Free. Here is a section of that newsletter:

    Autism and inflammatory bowel disease

    A substantial number of children referred to us are suffering from chronic stomach problems and/or have developed autism-like symptoms. Our own researches indicate that these two conditions may well have been caused by the MMR/MR vaccines and that they may well be linked.

    We are trying to put together as much information as possible about the apparent link between these two conditions and the vaccines. If you have any information, or know of other families with children who have one or other of these conditions (or both) following vaccination we would be very interested to hear from you. If your child has the condition(s) and you have not yet received the fact sheet produced by Dr Andrew Wakefield, do contact us.”

    It was no coincidence that the children reported in the 1998 Lancet paper claimed regression, GI complaints and many blamed the MMR vaccine.

    Was there “litigation bias” and a strong measure of self-selection in the Lancet 12? Absolutely. Was Mr. Wakefield aware of this? Yes. Did he make this clear to the public, or even his own colleagues? No.

    And we have yet to discuss what active role Andrew Wakefield himself took in recruiting study subjects to the Royal Free.

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