Tuesday, June 21, 2011

Jabberwocky of the Day : Autism an Advantage for Cavemen

Flickr image by Jason Schleifer
Did you know that autism might have been an advantage for hunter-gatherers in prehistoric times?

No, you can stop laughing, I am serious.  There was actually a paper published (and covered on Science Daily) a few weeks back that suggested that "the autism spectrum may represent not disease, but an ancient way of life for a minority of ancestral humans."

I don't want to copy the entire article from Science Direct (even though the entire thing is a riot) so here is just some highlights -
The "autism advantage," a relatively new perspective, contends that sometimes autism has compensating benefits, including increased abilities for spatial intelligence, concentration and memory. Although individuals with autism have trouble with social cognition, their other cognitive abilities are sometimes largely intact.
The paper looks at how autism's strengths may have played a role in evolution. Individuals on the autism spectrum would have had the mental tools to be self-sufficient foragers in environments marked by diminished social contact, Reser said.
The penchant for obsessive, repetitive activities would have been focused by hunger and thirst towards the learning and refinement of hunting and gathering skills.
Today autistic children are fed by their parents so hunger does not guide their interests and activities. Because they can obtain food free of effort, their interests are redirected toward nonsocial activities, such as stacking blocks, flipping light switches or collecting bottle tops, Reser said.
The paper is available for free online if anyone cares to read it.  I made it through the first two pages but I couldn't make it through any more than that.  Who knows, maybe this guy has the right idea but I tend to doubt it.  It sounds more like he has never met a person with even moderate autism let alone any children with  autism.

There are so many wrong ideas in even the first two pages that it is hard to know where to start talking about it.  For example, the paper suggest that people with autism are "ecologically competent individuals that could have been adept at learning and implementing hunting and gathering skills".

As anyone who has struggled to teach their child to teach their child even basic skills can tell you, teaching children with autism is rarely easy.  There is a very good reason why behavioral therapies such as ABA are popular for teaching children with autism and that is because they don't normally learn naturally or from their environment.  To call most children with autism "adept" at learning about the environment is like saying that a rock is "adept" at swimming.

And the idea children with autism are aware of their environment?  Many parents struggle with day to day basic safety concerns because their children have no awareness of their environments.  My children would walk out directly in front of a speeding car without blinking an eye.  They would walk up to a polar bear and poke it in the stomach, which would definitely not be "ecologically competent".

Maybe this is all supposed to change when children achieve "independence from their mothers"...  Wait, how many children who have autism actually grow up to be able to live independently?  I know there are some but I don't think that it is the majority.

Talk about one of the greatest fears that parents have for their children.  I am worried - like many other parents - whether my children will ever be able to learn enough skills to be able to function on their own.  Yet this paper assumes that young adults will automatically be able to achieve independence.  The hunter-gatherers must have had some kick-ass services available to be able to make that leap of faith.

But I think the most absurd idea here is that some trivial external factor such as hunger could refocus the repetitive and restricted interests of autism.  After having dealt with the repetitive and restricted in three children for over five years, I can confidently say that I don't think that it is really possible for any external factor to force these obsessions into a desired form.  You can extinct, redirect, distract, plead, beg, or threaten until you are blue in the face and still not make a dent in the behaviors - let alone changing them to focus on something specific.

I wish that someone had told me that all I had to do to refocus the behaviors was to withhold food.  Because  I spend at least an hour a day trying to get my kids to eat more.  Left to their own devices, I swear that they might forget to eat or only eat pretzels.  But according to this paper, letting the kids go hungry might help them able to be better survive on their own and learn that poking the polar bear would be a really bad idea.

Yeah, uhm, I am going to go out on a limb and say that I don't really think that it would work like that.

But seriously, I think the gentleman who wrote this, err, paper needs to get out in the real world and work with some real kids on the spectrum before coming up with any more theories.

P.S. The bit about starving children and withholding food is obviously a joke.

P.P.S That is unless it actually works in which case there are going to be a lot of hungry children with autism shortly.

P.P.P.S.  Just in case, maybe someone should bring Dr. Lovaas back from the dead to tell him that he had the right idea but was using the wrong reinforcer.

References (and I use that term loosely)

Jared Edward Reser. Conceptualizing the autism spectrum in terms of natural selection and behavioral ecology: The solitary forager hypothesis. Evolutionary Psychology, 2011; 9 (2): 207-238

Sunday, June 19, 2011

What if Autism Isn't a Neurodevelopmental Disorder?

Picture from Wikimedia Commons
Autism is typically thought of as a neurodevelopmental disorder.  It is assumed that something goes wrong early in a child's development and that the brain doesn't develop properly and that the result is permanent.

But what if that wasn't the case?

According to some recent research, the symptoms of Rett Syndrome (a form of autism) might caused by the continuing lack of the protein MeCP2 rather than problems with growth and development of the brain caused by the lack of MeCP2.  If that seems like splitting hairs, it really isn't.  That simple distinction means that Rett's might not be a neurodevelopmental disorder after all.

For those of you who don't know, Rett Syndrome is (currently) one of the five conditions that together make up what is known as the autism spectrum.  However, Rett's is somewhat different from other forms of autism.  It is rather rare (1 in 10,000) and effects girls almost exclusively.  It also tends to involve physical issues such as loss of motor control, severe digestive problems, and heart problems.  However, unlike other types of autism, a probable mechanism for the problems of Rett Syndrome has been identified - mutations in the methl-CpG-binding protein 2 (MeCP2) gene.

Because there is a known genetic mutation as well a known biological pathway that is disrupted, researchers have been able to create a number of different model of what Rett's looks like in mice.  Using these mice, researchers have been able to test a number of different theories about Rett's and this work has lead to a better understanding of the condition.

Early last year, researchers demonstrated, using mice that were deficient in MeCP2, that if you could restore the levels of MeCP2 in the brain that the mice's Rett-like symptoms would be reversed.  That part isn't too surprising but it does show that Rett's is an ongoing process.

What is more surprising is work done just this year.  This time researchers took mice that developed normally with the proper level of MeCP2 and removed their ability to produce this protein as an adult.  Once the protein was removed, these mice developed the same Rett-like symptoms as mice that were MeCP2 deficient their entire lives.

As a result, researchers are now shifting from thinking about Rett's as a condition that is caused by the lack of this protein during critical developmental periods (i.e. neurodevelopmental) and instead thinking about it as a life-long condition that is caused by the lack of this protein.

Or in other words, even though Rett's is "genetic", it is caused by an ongoing biological process and it should be possible to "cure" the condition by correcting this process.  So while there is not yet any cure for Rett's, the possibility of a cure for everyone with Rett's just got a little closer to reality.

What I find interesting is that Rett's isn't the only known "genetic" cause of autism that works like this.  In recent years Fragile-X, the leading genetic cause of intellectual disability and autism, has been shown to be reversible in adults and there are actually drugs in the works that might be able to do just that.

So what if other forms of autism aren't neurodevelopmental disorders either?  What if, like Rett's and Fragile X, other forms of autism are caused by an ongoing biological process rather than caused by something that went wrong during early development?  I think there is certainly enough evidence of ongoing biological disruptions in people with autism to make this a possibility.

Friday, June 3, 2011

ASAN Declares Opposition to Autism Research, Surveillance, Education, Early Detection, and Intervention

The Autistic Self Advocacy Network, otherwise known as ASAN, has announced that they oppose renewing the Combating Autism Act.  For those of you who don't know, the Combating Autism Act (CAA) was passed in 2006 in response to the growing public health crisis of autism.

The purpose of the CAA was to -
  1. Develop disabilities surveillance and research programs.
  2. Create programs for autism education, early detection, and intervention.
  3. Establish the Interagency Autism Coordinating Committee (IACC) to co-ordinate all of the efforts within the Department of Health and Human Services relating to autism.
  4. Create two more Centers of Excellence on Autism.
The act authorized spending roughly 200 hundred million a year in these areas.  If you want a road map to what exactly the results of this act have been, you should look at the information provided on the IACC's web site.

While there is always room for improvement, the Combating Autism Act has been beneficial for people with autism and their families.  It has brought much needed attention and funding to deal with the ever increasing problem that is autism.

However, the CAA is reaching the end of its initial five year life span and needs to reauthorized by Congress for the programs it funds to continue.  The renewal of the act is currently before Congress and, perhaps surprisingly for some, ASAN has declared that they are against it being renewed. Their position, in the words of ASAN president Ari Ne'eman, is  -
While we respect the good intentions of the co-sponsors and value their interest in autism legislation, passing a 3-year extension of the current unacceptable status quo would do real harm to Autistic people and our families.  This legislation would keep in place a status quo without services, without consideration of the needs of adults and without inclusion of self-advocates. We urge Members of Congress to oppose any long term extension without needed program reforms.
In what amounts to a big F you to the majority of people on the autism spectrum and their families, ASAN is whining that because they don't get enough of the benefits from the CAA that no one should benefit.

Yet they are clearly missing the point that the CAA was not meant to fund adult services.  The purpose of the CAA was to do much needed basic research and to help set up screening, diagnosis, and intervention programs.  It was never about providing funding for adult services nor was it about having "self-advocates" dictate the direction of autism research.  I think it is better to leave those decisions to those actually qualified to make them - i.e. scientists and researchers.

Although when it comes down to it, the idea that "self-advocates" are excluded from the process is absurd on its face.  Two out of the 11 public members of the IACC are "self-advocates" including Ari Ne'man, the head of ASAN.  They have almost the same representation on the committee that parents whose children have autism do.

No, their entire point basically boils down to the fact that because they don't control the agenda and that they don't get enough of the money that the whole thing should be scrapped.  As they did with the wandering issue, ASAN has taken an ideological stance that is completely at odds with the needs of the majority of people who have autism.

What ASAN should be doing is advocating for additional funding for adult services, not trying to sabotage the funding for research and programs that will benefit everyone with autism.

Study Watch : Autism Prevalence in Utah Increases Again

Yet another prevalence study, this time from the state of Utah.  Researchers are estimating that the administrative prevalence of autism in eight year olds increased (cough) only 100% between 2002 and 2008 to 1 in 77 children.  That is up from the the 1 in 133 that was found in 2002 which was itself a 20 fold (1900%) increase from the prior estimate in the eighties.  At the time, the 2002 number was called an "urgent public health concern".

Since this data point is already 3 years old, I have to wonder how much our "awareness" has increased the number since then.  If it has continued to grow at the same rate that would put it at about 1 in 50 today.

It is a good thing that autism isn't becoming more common because otherwise I might have to start worrying.

There is a short post about this study over at Questioning Answers if you are interested.

Changes in the Administrative Prevalence of Autism Spectrum Disorders: Contribution of Special Education and Health from 2002-2008.
Pinborough-Zimmerman J, Bakian AV, Fombonne E, Bilder D, Taylor J, McMahon WM.

University of Utah, Salt Lake City, UT, USA

This study examined changes in the administrative prevalence of autism spectrum disorders (ASD) in Utah children from 2002 to 2008 by record source (school and health), age (four, six, and eight), and special education classification. Prevalence increased 100% with 1 in 77 children aged eight identified with ASD by 2008. Across study years and age groups rates were higher when health and school data were combined with a greater proportion of cases ascertained from health. The proportion of children with both a health ASD diagnosis and a special education autism classification did not significantly change. Most children with an ASD health diagnosis did not have an autism special education classification. Findings highlight the growing health and educational impact of ASD.

PMID: 21538173

Thursday, June 2, 2011

Study Watch : Autism Prevalence in Iran

I found this estimate of the rate of autism in Iran to be interesting, especially in light of the recent estimates from countries like South Korea.  I don't know exactly what time frame this study looks at but I would guess that it would be looking at children born since 2000 or so.

There is certainly a big difference between the 264 per 10,000 estimated in South Korea and the 6 per 10,000 found in this study.

A National Study of the Prevalence of Autism Among Five-Year-old Children in Iran.

Samadi SA, Mahmoodizadeh A, McConkey R.
University of Ulster, Northern Ireland, UK.

In Iran, more than 1.3 million five-year olds have been screened for autism over three academic years, with the Social Communication Questionnaire (SCQ). The Autism Diagnostic Interview-Revised (ADI-R) is used to confirm a diagnosis of typical autism. The resulting prevalence of 6.26 per 10,000 for typical autism is in line with rates for certain countries but is lower than those reported recently for some Western nations. This may be due to the younger age range assessed but the suitability of the tools and aspects of Iranian culture could be other reasons for the lower prevalence. International comparisons of prevalence rates is fraught with difficulties, but it is a valuable endeavour as it can identify issues around cultural and societal perceptions of children's development.

Pubmed ID : 21610190
DOI : 10.1177/1362361311407091

Wednesday, June 1, 2011

Ken Reibel's Obnoxious Streak

Another year, another round of autism conferences, and Ken Reibel (aka Autism News Beat) is at it again.  He is complaining because he got kicked out of yet another Autism One conference.

Albert Einstein once said that the definition of insanity was doing the same thing over and over again and expecting a different result.  So let me ask you, if you have tried to pull the same stunt on numerous different occasions and had the same result each time, would you try it again?

You would if your name was Ken Reibel.

Three years ago, Mr. Reibel was booted from the Autism One conference for being obnoxious towards one of the presenters and video taping some presentations.

Two years ago, Mr. Reibel was denied a press pass to the Autism One conference because he was violated the ban on video taping the prior year (and possibly on general principal).

Last year, it looks like Mr. Reibel sat out the Autism One conference, but he did get his right to attend a TACA conference revoked.  The reason was that the conference organizers wanted to create a safe and supportive environment and Mr. Reibel had been disruptive at prior autism conferences.

This year, Mr. Reibel attended the Autism One conference and, lo and behold, he got booted again.

Of course, he and the reset of the "science" based crew are complaining their heads off about the affair.  But despite all of the uproar from the pseudo-facts groups about how Mr. Reibel did nothing "wrong", his own words condemn him.  He wrote -
We stopped near a hyperbaric oxygen tank display. I wondered if it mattered to anyone that a recent paper co-authored by Wakefield found no benefit from HBO for the symptoms of autism. So little of what I had seen and heard made sense. 
Then Jamie took her 35mm SLR digital camera out of her handbag and snapped a picture of an HBO poster.Seconds later the conference organizer, Teri Arranga, walked up to us. She was all business. “There is no photography allowed here,” she said. To prove her point, Teri sent a volunteer to bring back one of the many signs posted throughout the area that said “No video or audio recording allowed.”
Jamie pointed out, politely and correctly, that a 35mm camera which only takes still pictures is not a video or audio recorder. ...
Yet if you look at the conference policies that are linked to from conference registration page, you would see this very clear section -
No recording of any type is allowed without prior written permission.  Any individual using audio, video, or other recording or photographic devices without current written authorization from the conference organizers may be required to leave the conference.
It is obvious that taking a picture clearly falls under this policy.  It doesn't matter if their were signs posted at the event that specifically listed "photography" as a separate activity from video recording. Mr. Reibel and his accomplice had to agree to these terms to register, so yes, by definition, they did do something "wrong".

You would think that since Mr. Reibel has a history for getting into trouble at this conference that he would have been extra careful to know and abide by all of the rules.  Especially if his intention was to be a "peaceful, non-disruptive" person.  Just between you and me, I don't think that was his intention.

But even without this rule breaking, the fact remains that conferences like this are considered private events.  A person does not have the right to attend and the organizers of the conference have the right to kick out anyone that they want to for any reason.  If the organizers felt that Mr. Reibel was going to be a disruptive presence - as he has been in the past - they would be well within their rights to kick him out.

I don't think kicking him out was that far out of line either.  The organizers  put a lot of time and effort into getting the conference together and there are a lot of people who are attending because they want to hear what the people at the conference have to say.  If you were the organizers or an attendee, would you want someone around who is there just to cause trouble or write nasty things about you later?