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Autism mum needs help of autism community – please help

16 Jun

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

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

My house burned down today.

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

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

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

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

Please keep us in your thoughts and prayers.

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

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

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

Thanks you in advance.

Autism and gender identity

16 Jun

Two abstracts from IMFAR (the International Meeting for Autism Research) caught my eye as they discussed an area I haven’t seen discussed much (if at all): gender identity and autism.

The 2008 paper was from the Autism Research Centre (ARC), R.M. Jones first author, and Simon Baron-Cohen‘s group:

Female-to-male transsexuals and autistic traits.

The second paper had first author I. L. J. Noens ( Katholieke Universiteit Leuven) with collaborators from the Netherlands.

Co-Occurrence of Autism Spectrum Disorders in Individuals with Gender Dysphoria

It isn’t surprising that the ARC paper was looking for support for the Extreme Male Brain theory of autism. They tested transsexuals, female-to-male and male-to-female, “typical” [edit: typical is their term in the abstract] males and females and people with Asperger syndrome. They used the Autism Quotient test. What they found was that male-to-female transexuals and “typical” males and females scored about the same. Female-to-male transexuals scored significantly higher than these groups in AQ, but significantly lower than people with Asperger syndrome. The concluding sentences in the abstract stated:

We speculate that these biological females, being masculinized in their autistic traits, may have had difficulties socializing with a female peer group and therefore found it easier to identify with a male peer group. This research illustrates how carefully selected groups in the population (e.g., congenital adrenal hyperplasia) can inform the extreme male brain (EMB) theory of autism.

I think this speculation is just that–speculation. I am not really comfortable with the speculation either. However, the idea of studying gender identity and autism stayed with me. So, I was very interested when I saw the abstract for the Noens study in the 2009 IMFAR abstracts.

Noens et al. took a different approach. They tested people for autism who were referred to the Amsterdam Gender Identity Clinic.

From April 2004 to December 2007, all children and adolescents referred to the Amsterdam Gender Identity Clinic were screened for ASD features.

Their preliminary results?

Preliminary results indicate that at least 6 % of the 233 referred children and adolescents has an ASD. This percentage remains almost the same for the referrals with a confirmed Gender Idenity Disorder (GID) or Gender Identity Disorder-Not Otherwise Specified (GID-NOS) diagnosis. The group of individuals with ASD and GID (seven adults included) is heterogeneous in various respects: sex (both male and female), GID classification (GID, GID-NOS, transvestic fetishism), ASD classification (AD, Asperger syndrome, PDD-NOS), age of onset of GID (before or after puberty), and developmental trajectory (cross-sex behavior temporary or persistent).

Pretty interesting, if you ask me. 6% of people referred to the clinic had an ASD. Unlike the results from the ARC group, there appears to be similarity in the male and female subgroups.

6%–about 6x the prevalence of autism in the general public. That is worth following up on.

There is, of course, another study one could consider: how many people with ASD’s have GID’s?

Note: I hope I have treated gender identity with respect. If I have made any disrepectful comments, I would welcome suggestions for correction.

Another look at the citalopram trial

16 Jun

A recent study shows that Citalopram doesn’t control repetitive behaviors in people with Autism Spectrum Disorders. The failure of a drug trial usually leads to harsh criticism of the medical establishment from the biomedical community, but I haven’t seen much so far. Instead, Kev has already discussed this and made his opinion crystal clear. (As an aside–anyone who thinks bloggers here are somehow paid by pharmaceutical companies may want to read Kev’s post.)

The bottom line of the study was plain: citalopram doesn’t reduce repetitive behaviors in children with autism. Or, as Kev put it:

What the hell did they expect it to do? They expected it to reduce repetitive behaviours.

Seriously.

They put these kids on heavy duty SSRI’s because they flapped their hands and rocked back and forth. Excuse me for being a little rude here but so fucking what?

There is a good discussion of whether there is value in controlling repetitive behaviors in autistics in the comments to Kev’s post.

I had a different perspective on this–why did they expect citalopram to reduce repetitive behavior? The quoted rationale is that it works for obsessive compulsive disorder. I haven’t seen that many people with OCD, but repetitive behaviors in autism don’t seem all that similar to OCD traits to me.

On the other side of the question, repetitive behaviors are a measurable outcome. This may give some value to repetitive behaviors as a measure of success for autism treatments. This is something often missing from autism treatment trials–a clear, measurable outcome.

That aside, what else can we learn from this trial? The big answer: the placebo effect is alive and well. Consider this from the abstract:

There was no significant difference in the rate of positive response on the Clinical Global Impressions, Improvement subscale between the citalopram-treated group (32.9%) and the placebo group (34.2%)

Both the treatment group and the placebo group saw about 30% of the subjects improve. This was for a relatively short, 12 week, trial.

Citalopram has been used off-label for treatment on autistics for some time. I’ll admit that I was not aware of this, even though there are claims that a huge proportion of children with autism are on citalopram. The reason it is used–doctors believe it works.

The study authors expected there to be benefit for some subgroup:

“We didn’t expect it to work for everyone, but we were hoping that we’d be able to drill down into the population for whom it was very helpful and begin to identify the predictor of what a positive response would be,” he [Dr. Bryan King] said.

This part speaks well of Dr. King (at least to me). He went into this study with expectations of benefit. When the data said otherwise, he went with the data.

We need good trails of autism treatments. It is very easy for doctors and patients to believe there is benefit.

Does this trial mean that citalopram will be relegated to the dust heap of autism treatments? I somehow doubt it. Here is a quote from Dr. Andrew Zimmerman of the Kennedy Krieger Institute:

Zimmerman, the Baltimore autism specialist, said he’s successfully treated younger autistic children, ages 3 to 5, with the drug. He added that he uses smaller doses, which appear to not create as many side effects.

“If you start at a very low dose and build it up slowly, you see improvements in mood and decreases in repetitive behaviors,” he said. “The kids are more attentive.”

No, citalopram is not going away anytime soon.

Jake Crosby’s great big straw man

10 Jun

I’ve said it before—a blogger could spend his entire online time debunking blog posts from the Age of Autism. Between the pseudoscience and the bad policy promoted on that site, it is draining to just read it on a regular basis, much less respond. A few weeks ago a particularly bad post came through and I wanted to respond but, frankly, I just didn’t have time. The post was by Jake Crosby about a (then) upcoming article in Newsweek about Ari Ne’eman.

It is no secret to people who read this blog that I admire Mr. Ne’eman. A rough analogy is that Ari Ne’eman is to autism advocacy what David Mandell is (in my mind) to autism science: a person who is asking the right questions and staying above the vaccine debates. Mr. Ne’eman founded the Autistic Self Advocacy Network (ASAN).

It really is worth taking a few minutes to read the Newsweek article. I read it online, read Kev’s blog post, and then stumbled upon it in my doctor’s office last Friday.

Erasing Autism

Scientists are closing in on the genes linked to autism. So why is Ari Ne’eman so worried?

Since I am discussing Mr. Crosby’s blog post, you should read that as well. The history leading to that post is somewhat sad. A reliable source I know says that prior to the publication of the Newsweek article, Stephen Shore leaked the information. This led to a blog post by John Best, including death threats. Jake Crosby at the Age of Autism decided to blog his own misconceptions about it. Here’s one bit of advice for Mr. Crosby: when you are pickup up stories from John Best, fired Generation Rescue “Rescue Angel”, you are putting yourself in really bad company**. I am sure Mr. Shore did not intend to precipitate a blog post by John Best. At the same time, I hope Mr. Shore is somewhat chagrined to realize that this happened.

Mr. Crosby’s blog piece had a fairly simple theme: “don’t publish the Ari Ne’eman article; interview me instead”. Or, failing that, “Give me equal time”. We all knew (and I assume Mr. Crosby is intelligent enough to know as well) that his was an empty commentary: the article was already in press. There was no way to either pull it or to add Mr. Crosby’s comments*. But, it makes good blog fodder and may get Mr. Crosby’s foot in the door for future articles by Newsweek. Somehow I doubt Newsweek is impressed by strawman arguments, but, who knows, Mr. Crosby might appear on their radar now.

Let’s do what Mr. Crosby didn’t do. Let’s really look at what is being said and done by Mr. Crosby, Mr. Ne’eman, ASAN, Newsweek…you know, let’s discuss some facts.

Mr. Crosby has taken on one of the Age of Autism’s favorite tactics: the “straw man argument”. He pretends that Ari Ne’eman promotes the idea that autism is not a disability. There is a common tactic amongst those who dislike Neurodiversity: try to define it to be something it isn’t. I understand the motivation: it is really hard to go out in public as an autistic or the parent of an autistic and say “I am against a movement that thinks autistics deserve civil rights”. But, they people try this argument all the time. Case in point, Mr. Crosby’s blog post:

Neurodiversity is an ideology supported primarily by some autistic individuals and parents who do not believe that autism is a disability, and opposes any potential cure.

The statement was clearly false when Mr. Crosby wrote it. Mr. Ne’eman clearly considers autism to be a disability. I hope that Mr. Crosby was duly embarrassed when the Newsweek article was published, including a simple statement outlining Mr. Ne’eman’s position on the autism spectrum:

It’s a disability, yes, but it’s also a different way of being, and “neurodiversity” should be accepted by society. Autistic people (he prefers this wording to “people with autism,” a term many parents use, because he considers the condition intrinsic to a person’s makeup) must be accommodated in the classroom and workplace and helped to live independently as adults—and he is pushing to make this happen for everyone on the spectrum. They should also be listened to.

See what I mean? I find it amazing that a person with an ASD like Mr. Crosby could be against accommodations, independent living, and acceptance as people. So, rather than address this issue head on, he builds his straw man.

The real argument, we all know, is about the “cure” question. Mr. Ne’eman believes that Autistics should be allowed to say, “I don’t want a cure” and “please respect me as for who I am: autistic.” For those using pity politics to promote a cure agenda, people like Mr. Ne’eman are very tough obstacle to overcome. Case in point, a quote from the Newsweek article:

“There’s a misperception that autism is some thief in the night that takes a normal child and places an autistic child in its place,” he says. “That’s not true.”

Mr. Crosby has cast his lot with the pity-politics groups represented at the Age of Autism blog. That’s fine, it is his right. He is even within his rights to misrepresent other people and organizations in order to further his own ideology. I don’t think it is a good idea, or that it makes sense, but it is his right.

Mr. Crosby makes a number of completely unsupported assertions.

Yet, it appears there has been a mainstream media blackout on those of us within the community who publicly disagree with that point of view.

When I first read “Media blackout” all I could think was: do a Google news search for Jenny McCarthy and for Ari Ne’eman and get back to me on that one, would you Mr. Crosby? But, Mr. Crosby is lamenting the fact that autistic voices that dissent with Mr. Ne’eman are not heard. Well, perhaps that would change if, say, Generation Rescue or any of the other organizations who sponsor Mr. Crosby’s blog writing would put autistic people in prominent positions? Isn’t it ironic that this is exactly the sort of thing ASAN is promoting? Nothing about us without us. If Generation Rescue would listen to ASAN, perhaps Jake Crosby would have his platform. Instead, he supports groups that have no autistic representation.

Mr. Crosby uses another common Age of Autism tactic: use every chance possible to promote the “epidemic”. He argues against the “epidemic denialists” who don’t agree with the mercury-autism hypothesis. One thing I admire about Mr. Ne’eman is that he doesn’t spend much (if any) time on the “epidemic” and, instead, fights for the rights of people with disabilities.

Jake Crosby has to dig deep in order to find reasons to criticize Ari Ne’eman. Case in point, from a second blog piece by Mr. Crosby:

Then the Ari Ne’eman piece ran online a week later and then in the May 25th issue, where he professed his anti-cure views while expressing an unfounded fear of the unproven idea that autism can be prevented through eugenics.

Mr. Crosby plainly gets it wrong. The argument isn’t that autism can be prevented through eugenics. The argument is that with a good genetic test, one might in the future prevent autism through eugenics.

If one can find anything amusing about eugenics discussions, it might be this: Jake Crosby disagrees with JB Handley…and JB Handley agrees with Ari Ne’eman. You see, JB Handley has also raised the worry about genetic testing leading to a form of eugenics in a piece Autism Speaks: The Abortion Industry’s Best Friend.

Mr. Crosby closed his first blog post with this lament:

Unfortunately, I have not been as active as I would have liked since I am in college and just declared my major in history

Let me just point a few things out to Mr. Crosby: While an undergraduate, Ari Ne’eman has founded ASAN, worked in numerous states on bullying issues, special education reform, assisted living supports, issues for adults with autism and he was instrumental in getting the “Ransom Notes” ad campaign pulled. Mr. Ne’eman works with other disability groups to give advice to the federal government at high levels.

I don’t think he got where he is by making obvious staw man arguments about people he disagrees with.

Perhaps that is why Newsweek wants to talk to Ari Ne’eman and people like Mr. Crosby and myself are just blogging.

*Mr. Crosby has noted that he did not know that it would be difficult or impossible to pull or change an existing story. He also did not know beyond a vague “couple of weeks” how soon the article would be published.

**Mr Crosby states that his information did not come through John Best. I take him at his word and appreciate the fact that he doesn’t want to be associated with Mr. Best.

Auditing Autism in the UK

9 Jun

The National Audit Office investigates and reports upon the value for money that the British taxpayer gets from our government’s expenditure. They claim to be doing a good job. For every pound the NAO spends it says it saves the government another nine pounds. We will have to take their word for that.

The NAO have recently turned their attention to autism with a report, “Supporting people with autism through adulthood.” In a welcome move towards inclusion the NAO have produced a video illustrating the themes covered in this report and an easy read version as well. To judge from this report it would appear that the high costs to society associated with autism that are claimed by some researchers do not represent the true cost of autism at all. Lifetime costs running into millions of pounds per person and annual costs to the economy in excess of £28 billion a year are sometimes used to argue for drastic measures for prevention and cure. In the past I have questioned the assumptions behind those calculations. But the NAO starts by accepting those figures and then raises some interesting questions.

  1. How much of the expenditure on services is crisis management for individuals who are not provided with a basic level of support? How much would be saved if more cost effective supports were in place that obviated the need for expensive emergency interventions when things go pear shaped?
  2. How much of the existing support represents money well spent and how much is wasted on ineffective strategies that are followed because there is nothing else available?
  3. How many adults are deemed ineligible for services because the criteria are too narrow and do not take account of the need of those with Asperger syndrome or high functioning autism?

They identify two key weaknesses at present. There is a lack of data to inform strategic planning for autism specific services at all levels of government. So three quarters of local authorities do not have a specific commissioning strategy for autistic adults. There is a lack of knowledge and understanding of autism amongst frontline workers. Four out of five family doctors want more guidance in order to give a proper service to people with autism. Two hundred out of five hundred disability employment advisors have had no training in autism.

This last point is crucially important. It is unrealistic to expect autism specific services for every autistic adult. Most people, if they were helped with work and housing, could probably manage quite well most of the time. But when they do need support they should be able to turn to generic services that are autism friendly.

But autism friendly services do not just happen. They have to be part of the government’s strategy, supported by statutory guidance and resources for training. Autism specific services will also be needed. The NAO estimates that it would cost £40 million to provide specialised health and social care teams across the whole of England. But if these services were used to help people into paid employment and other forms of independent living they would actually save money.

  1. They would only have to reach four percent of autistic adults to break even.
  2. Reaching six percent could save £38 million a year.
  3. Reaching eight percent could save £67 million a year.

The NAO report is not just about saving money. It is about spending money effectively. They suggest that even a zero cost saving is OK if what is spent actually delivers improvements for service users. But they also point out that savings can be made by making timely and effective provision available. This report is an important tool in our campaign to influence government strategy during the period of public consultation ahead.

As Mark Lever, NAS chief executive said:

“In the current economic climate the Government cannot possibly ignore the huge potential cost savings and benefits identified by Parliament’s spending watchdog, of providing adults with autism with the right support at the right time. Neither the Government, people with autism nor the taxpayer are getting value for money from existing autism services and support, leaving those affected by the condition feeling isolated, ignored and often at breaking point. This is simply unacceptable.
Real savings will only be made if all Government departments work together to address the gaps in understanding and specialist support, enabling people with autism to lead more independent lives. We are, therefore, calling on the Government to ensure the NAOs critically important findings are reflected in the forthcoming adult autism strategy.”

What I really like about this report is its practical approach. There are no grand schemes, no injunctions to Defeat Autism Now or at least within the next five years. Instead they propose relatively modest changes to the way we plan and organize delivery of key services that take account of the needs of autistic adults. If this report is implemented it should save the government a small amount of money but it will save autistic people from a lot of the unnecessary grief they encounter with the present system.

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Citalopram no good for autism

8 Jun

An interesting study for me personally as it involves a crazymed I’m familiar with – Citalopram (the generic name) brand name Celexa in the US and Cipramil over here in Blighty.

Citalopram is an anti-depressant of the class SSRI which means ‘selective serotonin reuptake inhibitors’. In plain english an SSRI based crazymed stops serotonin being reuptaken and therefore your neurons wallow for longer in it. This is, apparently, good. Why? I don’t know, I am not a scientist, I am a user 🙂 Well, I’m not anymore, I take a different sort of anti-depressant crazymed called Venfalaxine which is an SNRI. I don’t know how that works either but it does and thats good enough for me. Hopefully it has plenty of formaldehyde and monkey kidneys in it.

Anyway, I had no idea that Citalopram was used off-label for autism and when I heard about this study my first thoughts were ‘what the hell did they expect it to do?’ Shortly followed by ‘Citalopram is some serious shit’.

What the hell did they expect it to do? They expected it to reduce repetitive behaviours.

Seriously.

They put these kids on heavy duty SSRI’s because they flapped their hands and rocked back and forth. Excuse me for being a little rude here but so fucking what?

Apparently

Side effects were more common in the children taking Celexa, the researchers found. Those on Celexa were more likely to have increased energy levels, impulsiveness, decreased concentration, hyperactivity, mechanical repetition of the same movement or posture, and sleep problems.

Oh wait, all the symptoms of the beginnings of what to me sounds like hypomania. Which is (gasp!) a side-effect of most if not all SSRI’s.

Because they flapped and rocked and swayed and liked routine. Good call.

“A medication that we thought would be helpful for these repetitive behaviors was no better than placebo,” he [Bryan H. King] says. “That calls into question how or if we should use [Celexa] or even related medications for this purpose.

Yeah? Does it? How about we call into question the necessity of drugging the shit out of a kid because s/he likes to rock and flap?

I have to wonder, I really do. How the hell did this study – which to me sounds more like torture – ever get past an IRB?

Apologies for the rant but this is appalling to me.

A vaccinated vs unvaccinated study

6 Jun

For as long as I can recall, this has been one of the clarion calls of the autism/antivaccine/pro-disease groups – that the only way to know if vaccines cause autism is to do a ‘simple’ study of vaccinated vs unvaccinated populations. Indeed, Generation Rescue carried out an ill-fated phone survey that in reality meant absolutely nothing so badly was it put together and carried out. But even if it _had_ been well designed and carried out the results were not good for pro-disease anti-vaccine autism believers:

Number of boys and girls with Aspergers
Unvaccinated: 1% of total
Partially vaccinated: 2% of total
Fully vaccinated: 1%
Fully and Partially combined: 2%

Conclusion: you are 1% more likely to have Aspergers if you have been partially vaccinated than unvaccinated. If you are fully vaccinated your chance of being Aspergers is no greater than if you were unvaccinated.

Number of boys and girls with PDDNOS
Unvaccinated: 2% of total
Partially vaccinated: 2% of total
Fully vaccinated: 1%
Fully and Partially combined: 1%

Conclusion: you are 1% more likely to have PDDNOS if you are unvaccinated. If you are fully vaccinated your chance of being PDDNOS is 1% less than if you were unvaccinated.

Number of boys and girls with Autism
Unvaccinated: 2% of total
Partially vaccinated: 4% of total
Fully vaccinated: 2%
Fully and Partially combined: 2%

Conclusion: you are 2% more likely to have autism if you have been partially vaccinated. If you are fully vaccinated your chance of being autistic is no greater than if you were unvaccinated.

Number of boys and girls with all ASD’s
Unvaccinated: 4% of total
Partially vaccinated: 6% of total
Fully vaccinated: 3%
Fully and Partially combined: 3%

Conclusion: you are 2% more likely to have an ASD if you have been partially vaccinated. If you are fully vaccinated your chance of being autistic is 1% less than if you were unvaccinated.

Overall conclusion: the best way to avoid being diagnosed with an ASD is to be fully vaccinated according to the CDC schedule.

And in September of last year, you may recall the announcement of yet another study that demonstrated there was no link between MMR and autism. During the press conference that launched that study David Kirby asked the lead author – Ian Lipkin – what his thoughts were about a vaccinated vs unvaccinated study. His answer was:

http://webjay.org/flash/dark_player

Very difficult if not impossible.

Given that, the US NVAC vaccine safety group released a draft of their latest thinking on the issue of vaccine safety which touched on the idea of doing this sort of study. The entire section related to this is quoted in full below:

Feasibility study of Vaccinated/Unvaccinated/Alternatively Vaccinated Children

Members of the public, stakeholders, and the Interagency Autism Coordinating Committee (IACC) have articulated interest in a study of vaccinated vs. unvaccinated children to determine if there are differences in health outcomes between groups with varying exposures to vaccines. The Working Group considered drafting a recommendation for an IOM review of the science, epidemiology and feasibility of studies of unvaccinated, vaccine delayed, and vaccinated children. The Writing Group Draft Document on Gaps in Research Agenda further developed this idea. The Working Group wishes to clarify several points on this topic. *First, the Working Group believes that the strongest study design, a randomized clinical trial that includes a study arm receiving no vaccine or vaccine not given in accord with the current recommended schedule, is not ethical, would not pass IRB review, and cannot be done*. The type of study that is being suggested would be an observational study of populations looking at natural variation in vaccination schedules including some children where vaccination is declined through parental intent. All children in the study should be recommended to receive the standard immunization schedule. The Working Group endorses the Writing Group’s recommendation for an external expert committee, such as the Institute of Medicine, with broad methodological, design, and ethical expertise to consider “strengths and weaknesses, ethical issues and feasibility including timelines and cost of various study designs to examine outcomes in unvaccinated, vaccine delayed and vaccinated children and report back to the NVAC.”

The Working Group does not necessarily agree with all of the language in the Writing Group’s statement, but with its general intent. The process should be open and transparent, engaging individuals from a broad range of sectors. Considerations as outlined by the Writing Group and modified by the Working Group are as follows:

– This review should consider strengths and weaknesses, ethical issues and feasibility including timelines and cost of various study designs and report back to the NVAC

– Consideration should be given to broad biomedical research including laboratory studies, and animal studies.

– Consideration should also be given to study designs comparing children vaccinated by the standard immunization schedule with unvaccinated children (by parental intention), and possibly partially vaccinated children or children vaccinated by alternative immunization schedules

– Outcomes to assess include biomarkers of immunity and metabolic dysfunction, and outcomes including but not limited to neurodevelopmental outcomes, allergies, asthma, immune-mediated diseases, and other developmental disabilities such as epilepsy, intellectual disability and learning disabilities.

– The inclusion of autism as an outcome is desired. This review should also consider what impact the inclusion of Autism Spectrum Disorders (ASD) as an outcome would have on study designs and feasibility, as referenced in the IACC letter to NVAC.

– This review should be conducted expeditiously, in a transparent manner, and involving broad public and stakeholder input.

So, as per a straight ‘vaccinated vs unvaccinated’ study, Ian Lipkin and NVAC Working Group agree that it can’t be done in the most scientifically accurate way and even if it could, it wouldn’t be ethical due to the requirement of excluding children from vaccination.

What they are saying is that a group like the IOM therefore should write up a feasibility study as to how such a study _could_ be done. Without this, its extremely unlikely that a vax vs unvax study will ever fly.

Amusingly, the way that the NVAC Working Group words a possible solution – vaccinated vs unvaccinated via parental choice – sounds pretty much like the Generation Rescue phone survey. And we know how that ended up.

ASAN Submits Amicus Brief to the US Supreme Court

2 Jun

I have a very high level of respect for the Autism Self Advocacy Network (ASAN). They one of the few autism groups (if not the only one) that actively works with other disability organizations.

Below is a statement from ASAN on the submission of an amicus (friend of the court) brief for a case before the U.S. Supreme Court.

The Autistic Self Advocacy Network, along with several other advocacy groups, has submitted an amicus brief to the United States Supreme Court in the case of Winkelman v. Parma City School District. The lawsuit was brought by the parents of an Autistic child who was not given the opportunity to continue receiving occupational therapy services in an Ohio school after the district had agreed that those services were necessary. The school district prepared an IEP stating only that a further assessment of the need for the services would be completed.

The Supreme Court is seeking to resolve a conflict among the Circuit Courts of Appeals, which have taken conflicting approaches to the question of whether a court’s analysis of the content of an IEP should consider only the written IEP or whether the court has discretion to consider other evidence as well.

Parents play a major role in developing an IEP, which is analogous to a contract with the school district specifying the educational services to be provided to the child. Related services such as occupational therapy also must be specified in the IEP pursuant to federal law as set forth in 20 U.S.C. § 1414(d)(1)(A)(4). School districts are prohibited from making unilateral decisions about a child’s IEP.

Consistent with the general rule that in contract law, evidence outside the written terms of the contract ordinarily is not admissible in court, three Courts of Appeals have ruled that only the written IEP should be considered in determining whether it is adequate. However, three other Courts of Appeals, including the court from which the Winkelman case was appealed, reached the opposite conclusion in deciding that an IEP lacking the required specific content could nevertheless be found valid based on consideration of other evidence.

The Autistic Self Advocacy Network is asking the Supreme Court to rule that when courts analyze the content of an IEP to determine its adequacy, only the written IEP should be considered. A school district should not be allowed to omit required content from a child’s IEP and then to assert later that it intended to supplement the IEP. Allowing districts to postpone decisions on the content of an IEP can lead to considerable delay in providing occupational therapy and other necessary services. The educational well-being of Autistic children and other students with disabilities is best served when they receive therapy without interruption or delay.

ASAN contact information:

Ari Ne’eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autisticadvocacy.org
732.763.5530

New autism prevalence 1.5% in UK

31 May

A new study published (officially) tomorrow discusses ‘Prevalence of autism-spectrum conditions: UK school-based population study’.

Its an interesting study for quite a few reasons. Firstly, it offers a new autism prevalence of 1.5% (1 in 66). That’s the message that the press will no doubt focus on (and, as Kristina blogs, already have). And I’ve absolutely no doubt that our friends from JABS, Age of Autism and various other anti-vaccine fringe groups will be painting this as part of their ‘evidence’ that we’re in the throes of a massive autism ‘epidemic’.

However, the paper itself is very nuanced and is clear in its messages. However, to be absolutely sure I was correct in the conclusions I drew I had an email conversation with Professor Baron-Cohen before writing this entry.

Point 1: This study confirms the baseline rate of 1% as asserted by the Baird et al paper

Baird et al (2006) asserted that their findings would offer a baseline rate of autism prevalence, that prevalence being 1%. This figure was ascertained by looking at a SEN population of a South Thames cohort. Baron-Cohen et al (2009) confirmed that figure:

These authors took the decision to screen only the ‘at-risk’ population and assert that their estimate should be regarded as the minimum figure. Our results from screening the entire school-aged population support this assertion…

In other words Baron-Cohen et al also looked at the ‘at risk’ population and also found a prevalence of 1%.

Point 2: Baron-Cohen et al identify a further 0.5% to make a total prevalence of 1.5%

What is different about the Baron-Cohen paper is that as well as looking at the ‘at risk’ group they _also_ looked at mainstream schools. Using the CAST screening tool, this study identified a previously unknown prevalence of 0.5% within this mainstream environment.

Our results from screening the entire school-aged population…highlights the reality that there are children with autism- spectrum conditions, notably children with high-functioning autism, who remain undetected in primary schools. These children may use strategies to mask their social and communication difficulties such as going to the computer room at playtime. They may be quiet and cooperative at school and not difficult to manage and therefore teachers may not be aware that they have difficulties. Primary schools in the UK are typically small and foster a supportive and nurturing environment. It may not be until these children move to secondary school that their true differences are revealed.

Often I have heard people asking how it is possible that people with autism could possibly be missed. The Baron-Cohen et al paper gives a graphic answer to that question.

Point 3: Caution should be applied in assuming that results ascertained in Cambridgeshire could be applied across the rest of the country

The area is very affluent within the UK and has excellent autism resources for autistic children. It is a given that many families have moved into the area to try and exploit those services. This would have a positive effect on prevalence that is not consistent with the majority of the UK.

Our study does not report on migration of families but given the level of services for and awareness of autism-spectrum conditions in Cambridgeshire, this remains a distinct possibility. Caution should therefore be employed in assuming that the figures reported here can be applied nationwide.

Professor Baron-Cohen and I had the following exchange about the autism ‘epidemic’:

KL: What would you say to someone who says that your paper is strong evidence of an ‘autism epidemic’ (because you know they will)?

SBC: I think the term ‘epidemic’ of most value in relation to contagious diseases, which autism is not.

KL: Can I rephrase my question? Would you say your findings support the idea that there has been a true rise in prevalence? As oppose to the seven items you say have caused a seeming rise in autism earlier in your paper?

SBC: There has been a real rise in prevalence but what is at issue are the causes of this rise. In the paper we summarize the quite ordinary factors that might have driven the rise, such as better recognition, growth of services, and widening diagnostic criteria.

So next time someone who likes to bandy about the phrase ‘epidemic denier’ like he knows what he’s talking about when he claims that the ‘epidemic deniers’ say that autism is just better recognised these days, tell him there’s a lot more than just one reason:

Prevalence estimates for autism-spectrum conditions have shown a steady increase over the past four decades. In 1978, the consensus estimate for classic autism was 4 in 10 000; today autism-spectrum conditions (including classic autism) affect approximately 1% of the population. This massive increase is likely to reflect seven factors: improved recognition and detection; changes in study methodology; an increase in available diagnostic services; increased awareness among professionals and parents; growing acceptance that autism can coexist with a range of other conditions; and a widening of the diagnostic criteria.

Autism Minnesota Somali community see through anti-vaccine brigade

29 May

In November last year, David Kirby wrote a Huffington Post entry about the Minnesota Somali autism situation saying:

In fact, one of the most obvious “environmental” differences between Minnesota and Somalia is mass vaccination…

And of course, the Age of Autism site, made many proclamations about the Somali community and vaccines:

Somali parents, I offer this advice as the father of a son with autism. Like many of you, I watched my normal son descend into autism after receiving his vaccines. I genuinely believe too many vaccines given too soon in our children’s lives is the primary trigger for the autism epidemic

However it seems that maybe the Minnesotan Somali autism population have done their own reading and come to their own conclusions.

The Somali American Autism Foundation is a new-ish Foundation. The domain name was created in Feb 2009 for example. Pretty much in the middle of the period that the Age of Autism crew were waxing lyrical about standing shoulder to shoulder with their Somalian friends in the battle against vaccines.

One of the founders of the SAAF, Idil Abdull, has this to say:

When my son Abdullahi was first diagnosed with autism at age three, I felt angry, sad and confused because I have never heard of the word Autism before. I had no idea what to do next and how to help my son. A mother’s job is to help her child with whatever life throws at them, but when the doctor told me there is no known cause and cure for autism, I felt helpless and hopeless.

I remember crying for what seemed forever. After I realized to be thankful that god blessed me with a beautiful son, I saw the hope in him and the help he needed from his mother. I rolled up my sleeves and went to work by reading every autism book I could find and going online for any help to give my son the hope he and countless others need and deserve. I would not change a thing about my son Abdullahi. He is a happy and loving child and I thank god everyday for him. There is HELP and There is HOPE not just for my son but for all of our children.

Now thats a pretty fantastic, positive and…yep, neurodiverse, type of message don’t you think?

But there’s more.

The SAAF website carries a detailed explanation of what a vaccine is and how they were first started. It takes away a lot of the negative mystery and states:

There is a strong minority of people who believe that the increasing rates of autism and learning disabilities in the U.S. are related to its mandatory immunization program. There is still no credible evidence of a correlation between autism and vaccinations. This position is supported by the World Health Organization, the CDC, The AMA, and the American Academy of Pediatrics.

They then recommend that a parent talk to their physician. What simple, credible and good advice.

I’d like to welcome The SAAF to the growing community of autism organisations that are clearly fed up with a constant preoccupation with a disproven hypothesis. Maybe it would be a good idea for SAAF and the newly created Autism Science Foundation to talk together.

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