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It’s different for girls

13 Apr

One of the puzzling things about autism has always been the disparity between the sexes.  Boys have always been more susceptible than girls. This is not in itself unusual. There are gender differences affecting a whole range of conditions and, if this New York Times article is correct, men frequently come off worse.

But if boys are more susceptible you might have assumed that as the severity of the condition increase this disparity would become more marked. In fact you would have assumed wrong. According to this source:

The greater severity and lower frequency of autism in females has been cited as evidence for a multifactorial polygenic mode of inheritance with differential loading by sex, which predicts greater severity in the less frequently affected sex.

Greater severity is usually taken to include severe cognitive impairment as well and the greater the degree of cognitive impairment the closer the ratio between boys and girls.  But there are problems with this model. David Skuse has argued that the association between cognitive impairment and autism is not because they share a common cause but simply because if you have both conditions you are more likely to be seen by a clinician and get a diagnosis. More able people may be just as autistic but have coping strategies that enable them to avoid a diagnosis.  And if girls have better coping strategies than boys they will be disproportionately overrepresented amongst autistic people without cognitive impairment who are missed by the system.

Last week Woman’s Hour broadcast a segment on Asperger syndrome took up this argument and suggested that there may be as many girls as boys on the spectrum. Most of them are not getting a diagnosis because they present in ways that are unfamiliar to clinicians who are used to seeing the condition in boys. The programme is no longer available but Sunday’s Observer carried a two page spread on the same story.

Experts like Judy Gould and Tony Attwood cited by the Observer still believe there is a gender difference but they estimate that it is only 2.5:1. Asperger girls may be more passive than boys. They do not assert their difference or draw attention to themselves. Instead they observe and copy other people’s behaviour. Their special interests may be intense but are also likely to be more socially acceptable; reading fiction, following soaps, celebrity culture – the sort of thing that lots of other girls do – and so they do not stand out.

Conformity comes at a cost. The Observer quotes Tony Attwood’s estimate that 20% of anorexic girls are undiagnosed autistics. Then there is self harm and other evidence of psychological stress. There are important differences between men and women. They need to be understood and respected. But it does not help autistic women if autism is described as an extreme male brain syndrome. The Observer ends by quoting professor David Skuse who believes that:

if we can prove the ratio of boys to girls is as high as many of us suspect, it would be as significant a milestone in this field as the discovery that the condition is on a spectrum.”

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The Somali Minnesotan Autism Epidemic

13 Apr

One of the most intriguing scenarios to pop up from the so-called autism epidemic happened in Minnesota in the US. It was noted that there were what seemed to be disproportionately high numbers of second generation Somali children in Minnesotan schoolrooms. Of course, this was immediately latched on to by the usual suspects, despite the caution issues by health authorities that until proper epidemiological studies had been done it would be impossible to say whether this really was a cluster worth investigation or just a coincidence.

On the 31st March, the Minnesota Dept Health released the study. Its a fairly substantial read. One thing immediately struck me about this:

Administrative prevalence of Somali children, ages 3 and 4, who participated in the MPS ECSE ASD programs was significantly higher than for children of other races or ethnic backgrounds

OK so this is what the families were saying. But there’s an extreme note of caution that should be noted here. This is basically CDDS all over again. Just like some believed that an increasing number of reports to CDDS meant that there was an autism epidemic and just as CDDS said there reports really shouldn’t be used to study these things, MDH are also saying:

Because of the study’s limitations, it is not proof that more Somali children have autism than other children…

This is a vital point. Back in 2005, James Laidler made the clear point that Department of Education data on autism are not reliable for tracking autism prevalence.

Sadly, the new Age of Autism editor, Abdulkadir Khalif, either misunderstood or elected to ignore this issue when he said:

It was obvious from the numbers that the issue of prevalence has finally been settled, and that there definitely is a cluster of autism in Minneapolis

It is clear from the report that Khalif has grossly overstated the case. Firstly, the issue of prevalence is far from settled. MDH seem to be solely using educational data which, as pointed out by Laidler, is not reliable for tracking autism prevalence. Indeed the phrase ‘administrative prevalence’ used by MDH reflects this. ‘Administrative prevalence’ refers solely to numbers of kids in educational programs. This is a clear distinction from ‘prevalence’ which is the proportion of individuals in a population who suffer from a defined disorder. Using only educational data gives a distorted picture.

As has been shown, the USDE data on autism are at odds with studies of autism prevalence, largely because the criteria used by the school districts (the source of the USDE data) to categorize children as autistic are neither rigorous nor consistent. They are inconsistent over time, as are the medical criteria, and are inconsistent from region to region. The USDE data are not reliable for tracking the prevalence of autism, and they in fact never were meant to fill this need.

Secondly Khalif uses the word ‘cluster’ whereas the MDH report does not use it at all. And it is not a word that should be used in such a throwaway fashion – it has a distinct epidemiological meaning.

So clearly, contrary to Khalif’s assertion that the issue of prevalence has been settled, it has not. Contrary to his statement that there is a cluster, there has been no such epidemiological assessment or statement.

Here are some more quotes from the MNH report that Abdulkadir Khalif either chose to ignore or never actually read:

The fact that a child is participating in an ASD early childhood program is an indicator of educational need, but that child may or may not have a medically diagnosed ASD.

Further, Minnesota’s public school open enrollment policy allows children to attend special education programs in school districts where they are not residents. This raised the question of whether participation rates for Somali children might appear higher than the participation rates for non-Somali children because of an influx of Somali children who are not residents of the Minneapolis school district attending MPS ECSE programs for ASD.

Data on variability of ASD prevalence by race, ethnicity, and SES is limited and inconclusive, and apparent differences between racial and ethnic populations may largely be due to differences in case finding and service provision.

Across all assumptions and ASD program types, administrative ASD prevalence estimates for Somali children were uniformly higher than the U.S. parental reported ASD prevalence, but most of the 95% confidence intervals corresponding to the administrative prevalence estimates for Somali children contained the value of the U.S. parental reported ASD prevalence estimate – suggesting that the 2005-2006 administrative ASD prevalence for Somali children might be no different from what would be expected in the U.S. population of children ages 3 and 4 based on parental report.

So what does this mean?

It means that there are no firm answers and that Khalif is simply wrong to assert that there are.

Its always been one of the great puzzles to me that a section of (mostly) parents who demand accurate answers fast cannot seem to understand that there _are_ no accurate answers until the science – proper science – has been done. And that takes time. What legacy do these parents want to leave the autism community? Fast inaccurate mistakes? Or well planned and rigorous science that helps build the growing knowledge we already have?

California tries to win back “stay put”

13 Apr

Parents, of course, have the primary responsibility to provide for the needs of their children. But, children and adults with special needs often require more than their parents can provide, and that’s where government agencies are supposed to help out.

In California, the Regional Centers manage government sponsored services for those with exceptional needs up to age 3. At age 3, the school districts take over as the lead agency, with the RC’s taking a secondary role.

That is, of course, if all goes according to plan.

What if a school district is swamped or for any other reason isn’t prepared to take over? What happens to the child’s services?

Up until a couple of years ago, the child would stay in the same services until the school district and parents could work out the new plan. This was called “stay put”. A family could say, “Hey, look, you aren’t prepared to take on my kid’s services in the school, so we are going to ‘stay put’ with the services we have until this gets worked out”. During ‘stay put’, the district pays for the same services the RC was paying for until age 3.

Then came a change to IDEA, the Individuals with Disabilities in Education Act. Stay put was lost.

Yeah, parents can pay out of pocket while going through a dispute process. That is, parents with the money to do so. The dispute process, at best, take a few months.

This didn’t happen without a lot of activism to try to keep “stay put”. So far, it hasn’t reinstated “stay put”, but there is hope. State Assembly Bill AB1124 is in process.

There is a hearing on this with the Education Committee, this Wednesday (April 15).

This is a proposed California Law, but, let’s face it, setting the precedent that stay put needs to be in place could help people throughout the US. For Californians, now would be a good time to contact your assembly person about this. If your assembly person is on the Education Committee, now is a REALLY good time to contact him/her.

Speaking clearly

12 Apr

The Canadian Journal of Medicine have an interesting article by MacDonald and Picard pleading for clearer language to be used by academics. In
particular they note the potential for different audiences to make
different conclusions from the 2001 Institute of Medicine report
looking at the relationship between MMR vaccine and autism.

The conclusion in the executive summary of the 2001 Institute of Medicine report about the relation between the measles–mumps–rubella vaccine and autism provides an excellent example of potentially confusing academic language. This conclusion was carefully crafted in precise academic language — so precise that, depending on the reader, different conclusions can be drawn. The academic involved in vaccine research, familiar with the scientific principle that the null hypothesis cannot be proven, would conclude that this report does not find evidence that the measles–mumps–rubella vaccine causes autism. A health care worker reading this same statement may not be sure what to make of it: maybe the vaccine causes autism in some children, just not often. The politician may wonder whether supporting public programs for measles–mumps–rubella vaccination at this time is justified. The journalist may reasonably interpret the conclusion as saying that the vaccine is a cause of autism, albeit an infrequent one. The antivaccine lobby, for its part, would be delighted that this respected academic body has given support to its claims that the vaccine can cause autism.

Go and have a read, and compare the actual IOM conclusion with
MacDonald and Picard’s proposed conclusion. Their arguments have
merit, particularly when it comes to the media interpretation of study or report findings. However, I’m not so sure about the anti-vaccine movement, who will deliberately misrepresent studies to prove the complete opposite of what they say, but we can at least stop giving them easy ammunition with which to dupe others.

Omnibus Expert: Patricia Rodier

10 Apr

Autism just plain isn’t mercury poisoning. When can we move on?

Even some of the people who loudly promoted the mistaken idea that “autism is just a misdiagnosis for mercury poisoning” have backed off. But, the groups that promote autism as vaccine injury are packrats: once they’ve collected an idea, bad or not, they won’t ever let it completely go.

Some of you will be thinking, dang, another mercury post. I agree, there are a lot of good arguments against blogging about the mercury-autism connection any more. For one, it gives the idea press that it just doesn’t deserve.

I do think this is worth posting about, though. “This” is the expert report from Dr. Patricia Rodier, submitted to the Autism Omnibus Proceeding. In a single document, we now have an expert on both mercury toxicology and autism. Not faux experts, or worse, businesspeople and public relations people, but an actual, bone fide expert in both fields. I.e. we have a good document to give to people who are being snowed under by the misinformation campaign promoting autism as mercury poisoning.

When Patricia Rodier testified in the Autism Omnibus Proceeding, I was very impressed–and I blogged it right away. I remember at the time telling a friend that it was good to finally see someone officially debunking things like Sally Bernard et al.’s paper, Autism: a novel form of mercury poisoning. My friend pointed out that any college freshman in science (and most not in science) should be able to tear that “paper” apart.

Unfortunately, “should be able to tear the paper apart” isn’t enough. Many people don’t have the time and/or energy. So, many people still think that paper is valid. Let’s face it, that “paper” should have been retracted by the authors long ago, but they still soldier on with the “autism is mercury poisoning” message.

Dr. Rodier’s qualifications are quite good. Her summary is quite good:

As a research scientist who has studied both the toxic effects of methylmercury in animals and autism in children and animal models, I believe I am qualified to evaluate the scientific merit of the allegation.

She may be the only person in the world who has studied both mercury toxicity and autism.

What does she think? In a nutshell:

My conclusion is that the allegation has no scientific support and is highly improbable

Dr. Rodier notes that the comparison that autism and mercury poisoning appear similar isn’t even close.

In othcr words, because the symptoms of methylmercury poisoning
are not similar to those of autism, the authors have tried to construct a new, hypothetical kind of mercury poisoning from symptoms of toxicity of other mercury species and symptoms never reported for any kind of mercury exposure. The hypothesis is not based of facts; instead, the facts are being selected, manipulated, and shaped to fit the hypothesis. The hypothesis is then offered as evidence. But hypotheses are not evidence.

Ouch. Ouch, that is, if you are someone promoting autism-as-mercury-posinong.

Dr. Rodier can back up her words, as we discussed in the previous blog post. But, let’s say that again, Dr. Rodier uses research based facts, not manipulated hypotheses, to come to her conclusion.

I need to get a clean copy of that document, one that looks as good as the information it contains. That document needs to get into the hands of people being lured by the pseudo scientists promoting autism as mercury poisoning.

Thank you, Dr. Rodier for putting yourself on the line to testify. Thanks also to the HHS for allowing these reports to be made public.

Lies, Damned Lies and Science

7 Apr

Prior to starting a family I was already a skeptic and a subscriber to Skeptical Inquirer. This means I looked twice at the “helpful” information I got from all sides. From whether or not my baby would be a boy or a girl, what might have caused his seizures (like that fact that I drank milk, which was offered as an explanation after the “helpful” person was told he was infant only on breastmilk), the assurances I got that he would talk “when he was ready” or that someone’s cousin four times removed or Einstein did not talk until age three, five, or thirty-five (by the way, the Einstein is a total myth, don’t believe it — and don’t accept your child being compared to Einstein, he really had several flaws! See Private Lives of Albert Einstein, I should mention that sitting in therapy waiting rooms does provide lots of reading opportunities), and most recently I was told to try cranial sacral therapy (like a light head massage is going to “fix” the pathways in the brain that make him different!).

There is a tendency for people to give unsolicited advice to young parents, and that seems to double when it involves a child with a disability. Not only does the amount of advice double, but the relative distance from reality increases exponentially. While a parent of a typically developing child would be told to buy a certain organic baby food or to try some kind of “teach your baby calculus” computer program, the parent of child on a different developmental path would be encouraged to try a myriad of supplements, various odd treatments and to try the “miracle cure” they heard from some famous guy on the news.

How does a parent of a newly diagnosed child wade through the “help”, and determine what is real and what is hype? Well there is help, and it is not a cure all, but a book that shows how to look and science and separate fact from hype: Lies, Damned Lies and Science by Sherry Seethaler, a science writer and education at the University of California in San Diego..

It is not a long book, and is separated into short chunks to help explain the basics of science, why disputes in science is not really a bad thing, how to interpret numbers, and who the stakeholders on an issue are, and why they are important. She includes many real world examples and even comparisons to situations in the Harry Potter book where he excels at potion making by using the notes in the margins of an old book.

In Chapter 7, “Fun Figures”, there is a subsection titled “Ask whether a statistical change reflects reality or the way the data were collected.” Readers of this blog should be very familiar with the example she uses. They will also be familiar with the tactics described in Chapter 9, “All the Tricks in the Trade”, especially the section on pseudo experts.

This is a quick, actually quite a fun book to read. It can be a bit repetitive, but that is in part makes it easier to understand the concepts. I knew much of the information (like statistics), but I still learned a great deal. Check it out of your local library, and even purchase a copy for those friends and relatives who keep giving you all sorts of “advice.”

What is autism?

6 Apr

Consider a child who undergoes a traumatic event. This child develops “behavioral symptoms normally associated with the syndrome of infantile autism”. After treatment and time, the symptoms improve.

Did the child have autism?

It’s a pretty serious question, and not as simple as many think. Many think autism is defined merely as “a collection of symptoms”.

The question “what is autism” has been discussed a lot in the last year, both directly and indirectly. This was prompted in large part by the Hannah Poling concession, and often centered around the phrase “features of autism”.

Lisa Rudy at autism.about.com recently addressed this issue in a blog post: If It Looks Like Autism and It Acts Like Autism…

In her post she states:

But according to the diagnostic manual, unless the symptoms can be better explained by Retts disorder, Childhood Disintegrative Disorder or Schizophrenia – people with autism-like symptoms have an Autism Spectrum Disorder.

Well, yes and no. I’ll go into it because this bugs me somewhat, so indulge me while I explore this. There are three important facts that many leave out from the DSM-IV’s diagnostic criteria for autism.

First–the DSM-IV is a set of “diagnostic criteria”, not a definition of the disorders.

Second, consider this phrase in the diagnostic criteria:

Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play.

Emphasis added.

The criteria of “before age 3” is very important. I’ll discuss this more below.

The third “fact” that people tend to ignore is related to the age 3 criterion:

The closest thing to a definition of Autism in the DSM-IV is as a “Pervasive Developmental Disorder”. Again, emphasis added.

Sorry for the sidetrack. But, there is a difference between the diagnostic criteria and the definition of what autism (or any condition) is.

However, this does not mean, as I have have asserted incorrectly in the past, that the fact that autism is a developmental disorder precludes giving an autism diagnosis to someone suffering from an injury. Developmental disorders include, for example, traumatic brain injury.

OK, now that we have given more depth to the “definition” of autism, what about that example I started this post with?

Consider a child who undergoes a traumatic event. This child develops “behavioral symptoms normally associated with the syndrome of infantile autism”. After treatment and time, the symptoms improve.

And, no, I wasn’t referring to Hannah Poling or to anyone you probably were thinking of. This example is from this paper, Acute onset of autistic features following brain damage in a ten-year-old . Here’s the abstract:

Abstract We report the case of a 10-year-old boy who, following a prolonged period of unconsciousness, displayed severe eye-to-eye gaze avoidance, sensory inattention, and some other behavioral symptoms normally associated with the syndrome of infantile autism. The symptoms lasted only a few months and were associated with the more permanent behavioral changes of post-encephalitic psychosis. Serial computerized tomography scans were taken during his illness and recovery. The relevance of this case to the etiology of infantile autism is discussed.

I’ll admit: I wasn’t able to get the paper from the library and I didn’t pay the $34 to download it. I’d really like to read this in full, because it raises some very interesting questions.

One big question arises from the fact that this child isn’t/wasn’t autistic. He had autistic features, but he wasn’t autistic. Why wasn’t he given an autism diagnosis? Well, for one big reason, the symptoms had an onset at age 10.

Now, here is where it gets interesting. Consider this hypothetical situation: What if a two year old had the exact same causes for his autistic behaviors as the 10 year old in this paper? Would the 2 year old be “autistic” while the 10 year old isn’t?

It’s worth taking a moment to think that one through. This is a big question.

If symptoms define one as autistic or not, then both the 10 year old and the hypothetical 2-year-old are autistic. But, if we include the criteria that onset of symptoms must occur before age 3, then only the 2 year old is autistic–even though the cause is the same.

Obviously this doesn’t make any sense. How do they solve this contradiction? Does the 10 year old get an autism diagnosis? Does the 2 year old not get a diagnosis?

As I noted above, this is a much more difficult question than most people (even self-designated experts) want to make it out to be.

UK Autism Postcode Lottery

5 Apr

Nick Hornby is in the Telegraph today talking about the so-called ‘postcode lottery’. He talks of how it existed when his son was diagnosed, it definitely existed when my child was diagnosed and from my experiences talking to new autism parents it still exists today.

For those unfamiliar with the phrase it literally means that depending on where you live you may get good/bad/awful/no services. This is, as Hornby states, a national scandal. I’m aware of a location a couple of postcodes away from me in Stoke-on-Trent where the local health authority even go so far as to dissuade GP’s from making referrals to local CDC’s (Child Development Centers). Stoke has a reputation within the UK as being one of the worst, most violent and poor areas in the UK and I guess the local authorities see their financial priorities as being elsewhere.

Just to illustrate that, here’s a comparison of the West Midlands region of the UK according to NAS. Stoke – a large city – gets 27 known resources. Birmingham, also a large city less than 50 miles away gets 109.

And when we drill down deeper we find that Stoke has just one resource for assessment/diagnosis, compared to Birmingham that has four. No surprise autistic people and their families in Stoke struggle.

This is a crazy situation – how are we ever supposed to get a firm fix on prevalence and/or incidence of autism aside from anything else? Something needs to change in the UK and soon.

McCarthygeddon begins

1 Apr

Only yesterday Orac warned people of the upcoming wave of stupid about to break over us all. His only mistake in my view was confining it to the US.

Well today the wave breaks. In an interview with Time described by that publication as:

McCarthy and TIME science editor Jeffrey Kluger sparred over the causes of autism and the safety of vaccines…

Ihave to say that if this is sparring then I hope Mr Kluger decided against boxing as a sporting hobby. He all but rolls over and allows McCarthy to tickle his belly.

Theres a bellyfull of the usual facepalm inducing idiocy of course but also chilling warning about how far these antivaxxers are prepared to go:

I do believe sadly it’s going to take some diseases coming back to realize that we need to change and develop vaccines that are safe. If the vaccine companies are not listening to us, it’s their f—ing fault that the diseases are coming back. They’re making a product that’s s—. If you give us a safe vaccine, we’ll use it. It shouldn’t be polio versus autism.

Thats right, Jenny is quite prepared to go for a Polio epidemic in the name of her unscientific cause. And who’s fault will it be? Why the people who make the vaccine that helps prevent Polio of course! And why? Because Google Phd McCarthy – the woman who used to think she was an Indigo and her son a Crystal Child in communication with an alien – believes that vaccines cause autism. Of course the lack of any reputable scientific evidence tends to indicate she might just be in error but y’know why let a little thing like accuracy get in the way of a body count?

Time out Jenny, you’re getting scarier and scarier.

The vaccine debate has a real cost

31 Mar

Of course, this isn’t news. But usually the cost is characterized in the danger to public health.

What about the cost to people with autism? Here’s a blog post from the Simons Foundation. (as an aside–there is a real autism organization). They are quoting Cathy Lord and Paul Shattuck.

Given the diversity of the panel’s members, the strategic plan was, unsurprisingly enough, hotly debated, and continues to be scrutinized.

Most of the debate centers around the plan’s emphasis on environmental risk factors. Lord says this came at the cost of research on more worthwhile topics, such as how to expand treatment services to low-income families — a project for which she was hoping to be funded.

“It’s gone, just gone. I was pretty astonished to see that that had disappeared,” she says.

The report also doesn’t emphasize studying autism’s course beyond childhood, notes Shattuck. “The amount of money that goes into understanding services and aging and supporting people in their daily lives seems disproportionately small,” he says.

One of the problems with the vaccines-cause-autism groups is that they really don’t advocate for people with autism. They have abandoned entirely people of low income and minorities (except where they can be used for political gain).

It isn’t just that groups like SafeMinds, Generation Rescue and the rest can’t be bothered to spend the time worrying about minorities or adults. It’s the fact that the data those groups use to support the “epidemic” makes ZERO sense when you consider minorities.

Consider this: the “rate” of autism is 0.3 per 1,000 for Hispanics in Wisconsin, but 10.6 for Whites in New Jersey.

Why isn’t Generation Rescue calling for an investigating the Hispanics of Wisconsin? Shouldn’t they want to know what is “protecting” that subgroup from autism?

They don’t care, they don’t want to bring attention to the Hispanics in Wisconsin (or the under represented minorities across the nation), because it blows a big hole in the “epidemic”. Obviously we still aren’t counting all the people with autism in our prevalence estimates. How can we rely on the historical data that shows an “epidemic” if we aren’t doing a good job even now?

We’ve covered this many times in the past. It is one thing when the damage caused is more abstract. But when it become very real, when minorities are being left out in the cold, it is an outrage.

Hours and hours were spent in the IACC meetings wordsmithing the vaccine language. To groups like SafeMinds and people like Lyn Redwood, the Strategic Plan was a political document. It was a statement by the government, and it was critical to get as much “admission” of autism being caused by vaccines as was possible. So what if another generation of minorities gets mislabeled with Intellectual Disability or some other Special Education category when SafeMinds was able to get the IACC to admit that many parents think vaccines cause autism?

This is what happens when psuedo “Vaccine-injury” advocates pretend to be Autism advocates and take seats at the table. Lyn Redwood put her own interests and those of her organizations ahead of the well being of people with autism.

That’s just plain wrong.

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