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Why should the strategic plan include vaccines…

14 Nov

…if all the vaccines-cause-autism advocacy organizations can’t ask for it?

I’ve been watching the process for the IACC fairly closely. You may have noticed my obsession. One issue that has come up is…you guessed it, vaccines. IACC meetings have been available to listen to by phone. (thank you NIH!) I’ve listened to long…long…long…speeches about the importance of research on vaccines and mercury. It’s had very broad support from…well…Lyn Redwood and Mark Blaxill. Pretty much silence from the rest of the IACC.

That said, I can’t say I am not surprised that an 11th hour attempt to change the process. Yes, according to a letter sent to members of the IACC, “we as a community community” are “united” expressing disapproval for for the Strategic Plan in the current form. This isn’t new. In person and in letters, members of these organization have co-opted my rights into an “autism community” that supports their vaccine/mercury agenda.

But, it’s worth taking a look at the letter. Alternatively, you could trust me to tell you what I found. Better yet, let me tell you what I didn’t find: vaccines. No mention of the word vaccines…or mercury…or thimerosal…or immunization…or epidemic. I seriously had to check that the search function was working as I read that document.

Why point this out? To jab a little fun at our good friends? No, there is a much more important message here:

Take a look at the organizations that signed this letter:

Autism New Jersey
Autism Research Institute
Autism Society of America
Autism Speaks
Generation Rescue
National Autism Association
Organization for Autism Research (OAR)
SafeMinds
Southwest Autism Research & Resource Center (SARRC)
Talk About Curing Autism (TACA)
Unlocking Autism

If they can’t agree on including “vaccine”, “mercury”, “epidemic” or any variation of those words—

WHY SHOULD THE IACC INCLUDE THOSE WORDS IN THE STRATEGIC PLAN????

Seriously, there has been a big push to get the IACC to make a strong statement on the vaccine issue. And yet, these words are missing from their own letter.

So, I’ll say it again: if Generation Rescue, SafeMinds and the rest can’t agree to put “vaccines” or “epidemic” in a letter, why should the IACC bow to their wishes and include these terms in the Strategic Plan?

Autism Myths

11 Nov

It is my great pleasure to release my latest website – Autism Myths. Its not a blog, its more like a collection of blog posts on very specific subjects regarding autism.

Topics referenced so far are:

The IOM Are Afraid to Look At Susceptibility Groups
The Myth That Autistic Children Can’t Develop
The Myth of No Autistic Adults
The ‘Leaky Gut’ Hypothesis
The Myth of Overwhelming Immunity
Misleading Lab Reports
“Mrs Toast”
The Autism Epidemic
The Verstraten Paper
The Poling Concession
The Simpsonwood Conspiracy
The Amish Anomaly

Please use the contact page to send me comments and suggestions but if you do suggest stuff, please include a link to a blog entry that you think best dispels the myth in question. Please further note that the site is *not* just about vaccines, it is about all myths related to autism.

Dear Mr Obama

9 Nov

As a Brit, it really matters not one jot what I write to you, think of you or think of your policies. However, as we both know, it _does_ matter. Your soon-to-be-predecessor (and my goodness I am happy to write those words of Dubya) never understood why the opinion of the outside world mattered but you clearly do. And we in the outside world are rather keen on you.

I am very happy to note that your appointments indicated so far include Michael Strautmanis – father to an autistic child. As I understand it Mr Strautmanis very much favours an evidence based research approach to science. Good to know.

I was also amused to note that some think a certain Mr Kennedy may get an influential post. I suspect not. You don’t strike me a stupid man Mr Obama. Maybe some other portfolio needs filling? May I suggest Mr Kennedy becomes your drugs Cszar? I understand he has a good history in sniffing out drug issues.

Anyway, I was reading your Obama Statement in Support of World Autism Awareness Day and Awareness Month and I was both tut-tutting and nodding approvingly.

Tu-tutting as I read occasional talk of ‘epidemic’ and nodding approvingly as I read things like:

This effort will include diverse but credible research, treatment, personal care/assistance and family support…

and

Our nation and our world deserve an immediate and focused four-prong approach: research, intervention, life-long support, and an end to discrimination. As a result of the crisis, there is much debate as to the cause of autism and how to address it. What we need to do is devote ourselves to a solution built from a comprehensive plan that is research-based, inclusive, and effective.

Credible research….a plan that is research-based….very good to hear. I fear your recent competitor had no such plan but it is very good to hear of your commitment to a research-based plan.

Its also good to hear that you accept autism as a lifelong issue that requires intervention and an end to discrimination. Although this puts you at odds with the flat earthers who insist there is an autism epidemic which can be cured through non research based interventions (which obviously, they cannot back up) I think you have taken the right path and concentrated on the right issues – research based science that will offer a lifetime of evidence based interventions and care and result in an end to discrimination.

Glad you got in soon-to-be Mr President. I think you’ll do the real autism and autistic communities some real good.

Defeating Autism: A Damaging Delusion

7 Nov

Dr Mike Fitzpatrick’s new book ‘Defeating Autism: A Damaging Delusion‘ is now available (Amazon: UK, US, Canada). Just as I did for Paul Offit’s Autism’s False Prophets, I’ll give this a short review and a long review.

The short review: Holy shit, this book is good. Go buy it.

OK, so the long review. I got my copy when I was but a few ten’s of pages away from finishing Ben Goldacre’s Bad Science and try as I did I simply couldn’t resist putting Ben’s excellent book aside for the duration it would take me to read Mike’s book. Ben can rest easy in that it took me only a few absorbed and fascinated hours to read Mike’s book and I will thus be back with him shortly.

Mike starts with an overview of what is to come through the rest of the book – a subject delineated overview of the last ten years or so of attempts to defeat autism.

Mike’s son (who coincidentally is the same age as my own) is introduced and we hear of the abject lack of options given to parents in the early 90’s.

The clinic staff were all sympathetic and courteous, but they appeared to have no practical suggestions……We did not return.

It was at this time that Mike came into contact with two names, now steeped in the autism alt-med industry: Paul Shattock and Bernard Rimland. Shattock liked GF/CF and Rimland liked mega-dose vitamins together with anti-oxidants and _also_ the GF/CF diet. However:

I read the papers from Sunderland and San Diego with great interest……To say I was disappointed was an understatement. What immediately struck me about the writings of Shattock, Rimland and their colleagues was that, rather than indicating an innovate approach at the cutting edge of medical science, they revelaed a retreat into the byways and cul-de-sacs of the biological psychiatry of the 1960s and 1970s.

Then, later on, Mike discusses the beating heart of this book – the delusion itself:

I have become increasingly concerned at the damaging consequences of the quest to ‘defeat autism’. The movement that has advanced under this banner on both sides of the Atlantic seeks to redefine autism as an epidemic disease caused by vaccines or some other, as yet unidentified, environmental factor. Despite the lack of scientific support for this theory it has acquired the character of a dogmatic conviction for many who uphold it, in the face of all contradictory evidence.

Mike makes no bones about the fact that he considers (rightly so in my opinion) the quest to ‘defeat autism’ to be damaging on numerous levels. It is damaging financially to parents. It is damaging to relationships. It is damaging to children’s health. But most of all, it is damaging in the attitude that the crusade itself expresses towards autistic people. Mike, I am delighted to report, quotes extensively from Frank Klein and Jim Sinclair and makes nice mentions of Autism Hub bloggers at various times.

To me, this is an ‘autistic friendly’ book. Parents are not given any empowering pity just because they are parents and the voices and opinions of autistic people are given equal space to those who are not autistic. Mike does not try to pretend that everything is rosy in the garden of autism but he does most definitely portray the need to defeat autism as damaging. This is a must read for all parents and all people involved however peripherally in the field of autism.

David Kirby – Thimerosal does not cause autism

29 Oct

In something of a jaw-on-chest admission, David has finally admitted that thimerosal does not cause autism:

David Kirby, a journalist and author of “Evidence of Harm: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy,” said he believed that thimerosal, which still exists in trace amounts in some childhood vaccines, was no longer the “smoking gun.” Several national studies have found no connection, and a California study found that, even after thimerosal was removed from vaccines, diagnoses of autism continued to rise.

I would go on to say then that the claim that mercury in vaccines ever caused a never-established autism ‘epidemic’ needs to be retracted also. I would further like to see David (who has appeared on TV, Radio and in the press speaking as if thimerosal was definitely the cause) question his previous belief that this was ever a medical controversy.

We need to be clear on this issue. In the US, the idea that mercury in vaccines cause autism is the reason so many parents are not vaccinating their children. David was the chief media spokesperson in this belief and whilst it is gratifying to hear him publicly admit thimerosal does not cause autism – it needs to be proclaimed widely and David needs be much more public than this.

However, its not all good.

But, he said, the links between vaccines and conditions like autism are still strong and more research is needed.

Conditions like autism or autism?

David seems to have moved from targetting thimerosal to simply targeting vaccines in general. Contrary to his statement that there are strong links between autism and vaccines, the fact is that there are none. No decent science supports this hypotheses and (with apologies to David) he has a now self-admittedly bad track record when talking about ‘strong links’ between vaccines and autism. David’s ‘strong link‘ between thiomersal and autism was CDDS data and we all know how that one turned out. I’d ask David to please consider very carefully his ideas about ‘strong links’ of today turning around to bite him in the future. Does international public health really need another three/four year gambol through the wilderness based on a non scientific ‘strong link’ which in reality is simply an opinion?

We all know the recent makeover the vaccine hypotheses has been getting. Generation Rescue now no longer claim that autism is simply mercury poisoning for which the cure is two years chelation resulting in a child 100% neurotypical, no different from their peers. SafeMinds – an organisation dedicated to Mercury in their very name – attack MMR, a vaccine that has never contained mercury. Jenny McCarthy is now on board and gives credence to the idea that an average parent (such as myself) knows more about the sciences of medicine, epidemiology, toxicology etc etc than specialists who have spent years in their field. Whilst at the same time Ms McCarthy simply cannot keep her story straight about incidents from her book or even when her son was recovered or not.

The inconsistencies mount and mount and whilst I am glad that David has admitted the non-role of thimerosal in autism causation this is simply the tip of the iceberg. Are Generation Rescue, SafeMinds, NAA, TreatingAutism, A-CHAMP queuing up to admit the same? Are these same organisation prepared to go back onto the same TV/Radio stations they first proudly proclaimed they knew the cause and had the cure and admit they were wrong? Or will it all continue to be held behind the Emerald City of the new ‘Green Our vaccines where we are urged to never, ever look behind the curtain in case we see the simple, obvious truth about the grand machinations?

McCain courts the autism vote

16 Oct

If you watched the U.S. presidential debates tonight, you heard the “A” word a few times. Yep, Autism.

Senator McCain, who tripped up early in the campaign by giving credence to the thimerosal debate (and, yes, tripped up is accurate since he backed away fast from that stance), is courting the Autism community’s vote.

In discussing his running mate’s credentials to be president (should Mr. McCain for some reason stop being president), Mr. McCain stated:

She’ll be my partner. She understands reform. And, by the way, she also understands special-needs families. She understands that autism is on the rise, that we’ve got to find out what’s causing it, and we’ve got to reach out to these families, and help them, and give them the help they need as they raise these very special needs children.

She understands that better than almost any American that I know. I’m proud of her.

I wish Mr. McCain had more contact over time with the disability community. “She understands that better than almost any American I know”…I guess since she has a child with special needs and a young relative with autism, she has some experience, but wouldn’t it be nice if Senator McCain knew someone in the autism research community? (a guy can dream, can’t he?)

Actually, I really liked the way Senator Obama brought this back to one of his themes in his reply:

I do want to just point out that autism, for example, or other special needs will require some additional funding, if we’re going to get serious in terms of research. That is something that every family that advocates on behalf of disabled children talk about.

And if we have an across-the-board spending freeze, we’re not going to be able to do it. That’s an example of, I think, the kind of use of the scalpel that we want to make sure that we’re funding some of those programs.

For those who didn’t watch, there was discusssion earlier in the debate about a Senator McCain’s proposal for a spending freeze. Senator Obama made the point clear: cut smart, not blindly.

That said, I also liked how Senator Obama brought in the entire disability community. Yes, it was still child focused, but he did talk about “other special needs”.

I like how he sees research as a priority.

Senator McCain later stated:

And I just said to you earlier, town hall meeting after town hall meeting, parents come with kids, children — precious children who have autism. Sarah Palin knows about that better than most. And we’ll find and we’ll spend the money, research, to find the cause of autism. And we’ll care for these young children. And all Americans will open their wallets and their hearts to do so.

I wonder how many autistic adults were in his audiences? I wonder how many people with other disabilities (or family members with other disabilities) were in the audience.

Senator McCain may have thought that he was winning my vote, but he just lost it. Yes, disability issues, especially autism, play a role in my choice. But, this looks too much like pandering to the vaccine-autism crowd while doing the politician’s two-step around the sticky details.

I.e. it was “let’s use code words about the epidemic and vaccines to gather votes”.

I really hope I am wrong, but that was my read.

Senator Obama’s response really did speak to me, though. Focusing on funding research–and research for other conditions besides autism–spoke to goals that match mine, rather than an attempt to buy my vote.

The Los Angeles Times has a full transcript of the debate already.

Also, AutismStreet gathers his thoughts and types faster than I. There is a good treatment of this subject there.

here’s a taste:

She understands that autism is on the rise? Really? Can she clearly convey the distinction between more diagnoses, and an actual increase in prevalence? Does she understand diagnostic substitution? What about the broadening criteria and the changes in the very definition of autism? Does she really understand this? Or, is McCain pandering and simply parroting anti-vaccination and anti-autism advocate fundraisers’ “autism epidemic” rhetoric?

[added material]

I want to repeat: I really hope I am wrong about Senator McCain. Even if he loses the presidential bid, he is a Senator and someone we need to help in the probable lean years ahead–and beyond.

Vaccines on the Hill

25 Sep

With a hat-tip to Kim Stagliano at the Age of Autism blog. They got ahold of an email sent by Amy Pisani of Every Child by Two to legislators who were sending staffers to a briefing by Mark Blaxill and David Kirby on vaccines and autism.

Mr. Kirby promised to talk about, amongst other topics, Hannah Poling. That’s not what I would call a good briefing. A good briefing would be if the legislators asked HHS to talk to them about what the concession meant. Somehow, I think the two briefings would be significantly different. Then again, I suspect a briefing by the doctors who are studying that potential cause of developmental regression via mitochondrial dysfunction would also have a very different story to tell than Mr. Kirby. I strongly suspect that.

But, I digress, as I often do. You see, Every Child by Two thought that the legislators who were sending staff to the Kirby/Blaxill briefing should be informed that the information provided by that team was, well, not accepted by the mainstream.

The letter, respecfully written, respectfully submitted is quoted below. One reader of this blog asked Ms. Pisani for permission to reproduce it here. I am using the text from the AoA blog.

Why reproduce it here? Because many in the greater autism community agree with Ms. Pisani. This blogger certainly does. I hope that legislators know that many members of the autism community side with Every Child by Two on this subject.

So, after much delay, here is something written much better than the ramblings I’ve put together:

Today you have been invited to attend a briefing to provide “updates on the recent autism-vaccines debate”. While I recognize that most of you will likely be dealing with other priorities and will not attend the Maloney briefing, I write to you this morning because I feel it is critical to clarify that there is no debate among the scientific community regarding vaccines and autism. Instead, the debate rages on in the media due to the efforts of those who wish to sidetrack critical research away from finding the true cause(s) of autism and treating children and their families struggling with this condition.

‘Last week Dr. Paul Offit’s new book “Autism’s False Prophets, Bad Science, Risky Medicine, and the Search for a Cure” was published by Columbia University Press. This book is a must read for all those concerned with children dealing with autism. The Philadelphia Inquirer writes that “Offit’s account, written in layman’s terms and with the literary skill of good storytellers, provides important insight into the fatal flaws of the key arguments of vaccine alarmists, including such well-known names as Robert F. Kennedy Jr., Sen. Joseph Lieberman (I., Conn.), and Sen. John Kerry (D., Mass.).” And the Wall Street Journal writes “Ever since psychiatrist Leo Kanner identified a neurological condition he called autism in 1943, parents whose children have been diagnosed with the most severe form of the illness — usually in the toddler stage, before age 3 — have found themselves desperately searching for some way not to lose their children to autism’s closed-off world. Unfortunately, such parents have often found misguided doctors, ill-informed psychologists and outright charlatans eager to proffer help.”

In 1999 I was pregnant with my first son just as the questions first arose regarding the MMR vaccine and subsequently the thimerosal in vaccines. After attending Congressman Burton’s hearings (quite pregnant I might add) I too became alarmed. Fortunately, as the Executive Director of Every Child By Two I had at my disposal the scientific research and advice of the world’s leading experts on vaccines and I was able to confidently vaccinate my son without fear of side effects. As of today, eleven studies now show that the MMR vaccine doesn’t cause autism, six have shown that thimerosal doesn’t cause autism, and three have shown thimerosal doesn’t cause neurological problems.

I urge you to read a few of the reviews of Dr. Offit’s book which are listed below and contact us if you wish to have a copy sent to you.

I also ask that you please visit our new website www.vaccinateyourbaby.org – this site was unveiled in August with our new spokeswoman Actress Amanda Peet specifically for parents who have questions about vaccine safety.

at the risk of making this an extremely long blog post, let me do what the Age of Autism did not do: list some of the reviews of the book.

A definitive analysis of a dangerous and unnecessary controversy that has put the lives of children at risk. Paul A. Offit shows how bad science can take hold of the public consciousness and lead to personal decisions that endanger the health of small children. Every parent who has doubts about the wisdom of vaccinating their kids should read this book. — Peter C. Doherty, Ph.D., St. Jude’s Children’s Research Hospital and Nobel Laureate in Medicine for fundamental contributions in Immunology

As a parent it is my job to protect my children. Hearing all the rumors about vaccine side effects made me question the right thing to do. This book makes it clear that vaccines save lives, and that they clearly do not cause autism. — Amy Pisani, mother

In his latest book Paul A. Offit unfolds the story of autism, infectious diseases, and immunization that has captivated our attention for the last decade. His lively account explores the intersection of science, special interests, and personal courage. It is provocative reading for anyone whose life has been touched by the challenge of autism spectrum disorders. — Susan K. Klein, MD, Ph.D., Case Western Reserve Hospital, and Rainbow Babies and Children’s Hospital, Case Medical Center

No one has been more vocal-or courageous-than Paul A. Offit in exposing the false and dangerous claims of the growing antivaccine movement. Offit’s latest book lays waste to the supposed link between autism and vaccination while showing how easily Americans have been bamboozled into compromising the health of their own children. Autism’s False Prophets is a must read for parents seeking to fully understand the risks and rewards of vaccination in our modern world. — David Oshinsky, winner of the Pulitzer Prize in History for Polio: An American Story

All good reviews. But, dang, a Nobel Laureate in Medicine. Not just medicine but immunology? Plus a Pulitzer prize winner? Begs the question of why the Age of Autism didn’t include them.

I am so glad that they offered Dr. Offit’s book to the legislators. I hope that the legislators, or their healthcare legislative assistants take them up on the offer. It’s a well written book, and fairly concise. It really explains how we (the autism communities) got here (into a big mess where vaccines are such a high profile subject–at least in the media) even though we shouldn’t be (because the science has been done repeatedly and shown no link).

Word back on the briefing is that about 75 people attended–a mix of staffers, parents, possibly even a member of the press. One representative was noted. Mr. Kirby gave the short version of his talk (the full version is quite long–take a look at his power point presentations sometime!). But, we can all rest assured that Mr. Kirby is there to save the vaccine program (I do hope that autism-one puts this briefing on their website. I need to hear that claim by Mr. Kirby with my own ears). Mr Blaxill took on the “sickest generation ever” theme, common to the vaccine rejectionists (a claim that has been addressed ably by epiwonk).

But, again, I digress. Let me bring you back to what I see as the one message I think you should take home from this post (repeated from above):

Why reproduce it [Ms. Pisani’s letter] here? Because many in the greater autism community agree with Ms. Pisani. This blogger certainly does. I hope that legislators know that many members of the autism community side with Every Child by Two on this subject.

John McCain starting to back away from vaccines?

28 Aug

I’m a bit hesitant to blog about political figures from other countries. I don’t know an awful lot about John McCain other than he was a Vietnam (I think) veteran and was a POW for awhile. I know the Bush team sledged him pretty badly in the run up to Bush’s current term and I know he tries hard to cultivate a old-fashioned-take-no-shit-youngster attitude. I neither like him nor dislike him.

However, back in February he did irritate me quite a lot when he said:

[Autism]….is on the rise amongst children, the question is what’s causing it. And we go back and forth and there’s strong evidence that indicates that it’s got to do with a preservative in vaccines.

It irritated me because firstly, there’s no evidence its ‘on the rise’ in the sense I think he meant it. There’s no way of scientifically telling from current studies if it is or not. In fact, the best science done so far on the issue (Shattuck, 2006) states:

The mean administrative prevalence of autism in US special education among children ages 6 to 11 in 1994 was only 0.6 per 1000, less than one-fifth of the lowest CDC estimate from Atlanta (based on surveillance data from 1996). Therefore, special education counts of children with autism in the early 1990s were dramatic underestimates of population prevalence and really had nowhere to go but up. This finding highlights the inappropriateness of using special education trends to make declarations about an epidemic of autism, as has been common in recent media and advocacy reports.

In other words, because autism has not been tracked well up until now, there is no way we can say with any degree of confidence that is increasing. It may be, but most scientists think that instead of an _increase in autism_ , we are seeing an increase in _accurate diagnosis_ of autism.

Secondly, McCain’s statement irritated me because, of course, there is _no_ evidence, strong or otherwise, that indicates autism is caused by preservatives in vaccines. And certainly McCain totally failed to provide any kind of evidence for this silly statement.

However, as election time draws nearer, it seems McCain’s statements are growing a bit more (he said with no trace of irony) conservative. Maybe someone explained the facts of life to him: after having someone of less than stellar brain power in office for the last eight years, it might be a good idea to evaluate things properly, rather than just sound off and come across as Dubya Part II.

Here’s what he said recently:

We don’t know what causes [autism]. There’s a huge debate going on now about vaccinations. And I’ve read and studied and gotten briefings, and I don’t know all the answers.

Thats quite a lot more circumspect than ‘there’s strong evidence that indicates that it’s got to do with a preservative in vaccines’. A simple statement of facts. After all, its true – we _don’t_ know what causes autism. And there _is_ a debate going on about vaccinations. And guess what? John McCain _doesn’t_ know all the answers.

I’m guessing McCain’s team have suggested to him that if he doesn’t want to be known as the also-ran who hyped up unfounded fears of vaccinations in the middle of a measles epidemic sweeping through the country he’s attempting to lead then it would be a good idea to engage his brain before opening his mouth.

How the Hidden Horde were hidden

1 Aug

One of the (many) controversies within the autism community is the question of the hidden horde. The basic argument is:

1) Autism diagnosis have ‘increased’ massively in recent years. Prevalence now stands in the UK at approx1 in 100 and approx 1 in 150 in the US.

2) Something(s) must have caused this large scale increase.

This is where the division point is. Devotee’s of the ‘autism is vaccines/TV/mobile phones/whatever’ ideas say that the increase is not in diagnosis but in autism itself. That there really is a massive increase since the early 90’s in the amount of autistic people. They call this ‘the epidemic’.

People like me think that there may be a small ‘real’ increase but it is very small and what we are seeing is the effect of (to quote an authority on the subject):

The shift in how we view autism….is part of a broader set of shifts taking place in society.

…..

Doctors now have a more heightened awareness of autism and are diagnosing it with more frequency, and public schools….which first started using the category of autism during the 1991 – 1992 school year are reporting it more often….Epidemiologists are also counting it better.

…..

Still, these rates may not be proof of an epidemic. Why? Because the old rates were either inaccurate….or based on different definitions of autism than the ones we use now.

Interestingly, in the Autism Omnibus hearings, the families are now arguing (after years of ‘epidemic’ talk) that the amount of children allegedly poisoned by vaccines is so small as to be undetectable. Hardly a hallmark of an epidemic.

One of the arguments used by people who believe there has been an epidemic of autism is to say ‘if there has _not_ been an epidemic, then where are all the adult autistics?’ meaning that if the rate of autism has always been 1 in 100 or 1 in 150 then there should be an equal number of adult autistic people to children.

Its a logical thought but it doesn’t take into account one crucial fact; as far as I know, *no* epidemiological study has tried to count the adult autistic population in any country. So we have no real idea how many adult autistic people there are.

We have some clues – such as the 2004 Scottish audit that revealed that 45% of local authorities in Scotland considered adult prevalence grossly underestimated. For example, Perth and Kinross commented:

Figures for adults reflect the national findings that the numbers known to services/diagnosed represent a significant underestimate of those individuals likely to be affected. For example day centre managers locally consider a number of people to be on the spectrum who have had no formal diagnosis.

And this year, the UK Gvmt announced the would be undertaking the first ever audit of autistic adults in England.

But we do have the odd clue thrown to us now and again that shows where the so-called Hidden Horde might be. As the Scottish Audit suggests, they live amongst us, unrecognised or wrongly diagnosed.

Two recent studies from the Netherlands have shed a bit more light on what may be happening with adults.

In ‘Autistic Spectrum Disorders in Adults‘, the abstract states:

The expression of impairments in social interaction, communication, imagination and mental flexibility changes during development into adulthood.

Autism spectrum disorders in adults may mimic, or be overshadowed by, other psychiatric disorders.

Almost a direct agreement with the Perth and Kinross statement from the Scottish Audit.

The second paper ‘Recognition of autism spectrum disorders in adults‘ has an Abstract worth quoting in full;

Autism spectrum disorder was diagnosed in three adults. The first patient, a married man aged 41, was referred to a psychiatrist with ‘impending burn-out’. The second was a 32-year-old male student with schizophrenia and a depressive disorder who was referred to a centre for autism because a friend of his mother’s knew someone with Asperger’s syndrome. The third patient was a 25-year-old woman with a ‘fixation on food’ who was referred by her general practitioner to a psychiatrist for evaluation of longstanding use of antidepressant medication. Autism used to be thought of as a condition of childhood. Only recently has the diagnosis and treatment of autism spectrum disorders become the focus of attention in adult psychiatry. It is made all the more difficult as during development into adulthood, the expression of disorders of reciprocal social interaction, communication, imagination and repetitive stereotypical thinking and actions, change.

This again shows how autism can be ‘masked’ and how diagnostic tests suitable for children may not be suitable for adults. It also touched on another key issue – that only recently have adults begun to be looked at. It also thirdly touched on another issue – comorbidity. All these three people had ‘other’ psychiatric issues. I have no idea if their diagnosticians considered their autism to be comorbid or if their other diagnoses were considered comorbid to their autism. In the end it doesn’t really matter, except in one important regard: By failing to help these people properly when they were children, did their other psychiatric issues grow so pronounced that their autism was ‘eclipsed’ until a suitable diagnostic test was undertaken? If that is the case then we need to be very aware that there is indeed a large population of adults who have not got a full and proper diagnosis and thus are missing out on help they need and deserve.

Age of Autism still don't get it

15 Jul

Over on our favourite pompous blog, the authors and readers still seem to have trouble processing their collective importance to autism related science (none at all) as well as how successful politicians are at directing science (not at all).

They flourish a letter from the Chairman of the Subcommittee on Investigations and Oversight of the House Science and Technology Committee (long enough name fellers?) which is itself breathtaking in its dumbness.

In the Combating Autism Act, Congress directed DHHS to conduct research into screening, diagnosis, treatment and medical care for individuals with autism. These areas of research are essential to a balanced approach. In addition to these areas, I strongly encourage the IACC to promote a balanced research portfolio when examining the underlying causes of Autism Spectrum Disorder (ASD). An examination of the FY07 ASD Research Portfolio shows a strong preference to fund genetic-based studies related to autism. There is growing evidence that suggests a wide range of conditions or environmental exposures may play a role in the emergence of ASD.

So, they firstly admit the role of CAA did not ask DHHS to examine the causes of autism but then ask the IACC (a committee appointed as a result of the CAA) to do it anyway. They then tick the IACC off for having a preference for genetic based studies and say there’s growing evidence that a ‘wide range’ of things cause autism. Possibly thats true, but the reference they provide to support that statement belies their beliefs. They reference the recent IMFAR poster presentation of Laura Hewitson. A study that has not even been published. This _is_ a science committee right?

They then go on to repeat a number of anti-vaccinationist talking points (Hannah Poling, biomedical treatment etc etc) and then make their recommendation:

I urge you to consider forming a Secretarial-level Autism Advisory Board (AAB). While the IACC is the primary mechanism for the coordination of research, surveillance, and early detection activities within the Department of Health and Human Services, an AAB could provide additional public feedback and serve as a liaison between parents, individuals with ASD, advocacy groups and the Department of Health and Human Services, and would assist in reestablishing public confidence

and whom might be on such a board I wonder?

Groups such as SafeMinds, Generation Rescue, Autism Speaks, the Simons Institute, the National Autism Alliance, and the Autism Research Institute all have or are currently supporting research. Such groups have experience evaluating research, an in-depth knowledge of the current body of ASD research, and an appreciation of the new questions that may need to be examined in order to move our understanding of ASD forward.

This is a bad joke, surely. What is driving this is the fact that some IACC members are annoyed that the IACC didn’t immediately capitulate to their demands to study vaccines and vaccines only. There was a good reason why they didn’t. Its already been done. No association. Move on.

I have to say the idea of SafeMinds and Generation Rescue being on a board that is to restore public confidence to “parents [and] individuals with ASD” amuses and scares me in equal part. Maybe Mr Miller hasn’t seen founding members of Generation Rescue calling autistic people ‘trailor dwelling coo-coos’ or founder members of SafeMinds referring to blogs authored by autistic people and parents of autistic people as part of a ‘Wackosphere’? I think once he has (and he will, as will Secretary Leavitt and Dr Insel) he might stop and think futher.

Anyway, I digress, back to AoA. They employ a clever bit of deviousness to try and lever vaccines into the CAA:

The CAA listed 13 scientific fields but the only specific research topic mentioned in the legislative history was vaccines and their preservations as a possible cause of autism.

Hey, why would they need to? The Omnibus Autism hearings are doing that right?

But read carefully. It looks on a quick pass like vaccines are mentioned in the CAA. But they aren’t. They are mentioned in the ‘legislative history’. What that means is that there is no mention of vaccines in the CAA (and there isn’t. Read for yourself.)

Another word that would equate with ‘legislative history’ is ‘rubbish’ meaning ‘that which has been thrown away’. AoA – or in this instance Kelli Anne Davis (apparently the DC Political Liaison for Generation Rescue) – will be using the phrase ‘legislative history’ to try and afford some weight to the idea of vaccines being in drafts of the CAA. I really doubt anyone is going to fall for that little sleight of hand Kelli Ann.

And here’s the kicker:

This letter is the result of a year-long, collaborative effort between Generation Rescue, SafeMinds and the Investigation and Oversight Subcommittee.

I’ll bet it is.

Just this week, yet more genetic evidence was uncovered into the aetiology of autism. Y’know, the kind of evidence AoA et al are saying is useless and there’s too much of.

Let this be a marking point. Let us all remember that this is the week that the political process was co-opted in order to achieve a useless goal. The results of that, if successful, will be even less research into what could be vital therapies, educational strategies, residential innovations and means of garnering respect for autistic people.

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