Left Brain/Right Brain

I am an autism parent

2009-11-10T07:05:54Z

I’ve been thinking of this post for a long time. Pretty much since the first day the Autism Speaks “I am Autism” video came out.

I would have loved to make a response to the video, as in “I am Socks” or “I am Autism Speaks“.

I’m just not that creative. But I am able to lean on other people’s creativity, which I’ll do here in this blog post. First I’ll restate: First I’ll restate what I have said before: I didn’t like the way “I am autism” put the focus on pretty much everyone except the autistics. I didn’t like how it framed autism in terms of how it costs those of us non autistics. I didn’t like how the heroes of the story weren’t the autistics themselves.

I think a commenter to this blog, Emily reflected much of my views when she commented,

I’m no warrior. I’m doing the job I signed on to do when I decided to bear children. I took on that responsibility—whatever it entailed—when I, an adult, made that decision. There’s nothing warrior like or heroic in that. Heroes face fear and move forward in spite of danger. I can’t lay claim to that.

But these kids who fight every day to learn or bear the inputs around them or self regulate, who live minute by minute in ways that the neurotypical could only vaguely understand if they were packed into a echo chamber full of revving jet planes, these kids and autistic adults are the real fighters. I think of the severely affected children I know, how I’ve known them to work up the courage to do something terrifying to them, something that to a neurotypical would be barely noticeable. I’ve watched these kids hesitate, wait, stim, think, and then rush headlong with extraordinary bravery into it. That’s a hero.

Many people don’t like the way I am framing this. They say that people like me downplay the difficulties of being the parent of an autistic child. I point them to a recent post where Kev noted:

We all struggle. Its damned hard, we all lack services, all autism parents all over the world

Yes we all struggle. Is this supposed to be news to those outside the autism communities?

Guess what, I was a burden to my parents. I cost them money. I cost them heartache. All this even though I am not autistic. I was just their kid.

And, yet, somehow, they never once spoke of me in terms of how much I cost them.

Why should I treat my kid differently?

I am constantly reminded of the old movie Boys Town, and the real life Boys Town that exists to this day. If you remember the movie, you probably know where I am going with this. I admit, the image is a bit sappy by today’s standards, but I keep flashing on the statue and the slogan that Father Flanagan used for Boys Town: “He ain’t heavy, he’s my brother“.

Does anyone really believe the little kid isn’t heavy?

If that doesn’t make the point, let me put it another way. How many disability groups are there where the parents focus attention on themselves and the how much of a burden their children are?

One of the arguments often made is that Autism gets lower private funding that pediatric aids, juvenile diabetes…many other conditions. If those communities can pull in more money than the autism communities, we certainly don’t need to spend our children’s dignity in a quest for funding.

I always try to write as though my child will someday read and understand what I have written. Whether it will come to pass or not is irrelevant. Why should I write differently if I think my kid won’t understand what I say?

If this should come to pass and my kid reads what I have written, I realize that I will have to explain to my kid why at times I have been childish or lost my temper. But my main goal is that I hope to keep to a minimum the number of times I have to apologize for disrespecting my kid.

With all due respect to fellow autism parents Alfonso Cuarón and Billy Mann, I don’t consider “I am autism” to be respectful.

Once again, I will rely on someone else’s words, words from another songwriter. After I listened to “I am autism” I had to listen to this song. I listened over and over again. The song? “For Good” from the musical Wicked by Stephen Schwartz.

Here are the lyrics:

(Glinda) I’ve heard it said
That people come into our lives for a reason
Bringing something we must learn
And we are led
To those who help us most to grow
If we let them
And we help them in return
Well, I don’t know if I believe that’s true
But I know I’m who I am today
Because I knew you

Like a comet pulled from orbit
As it passes a sun
Like a stream that meets a boulder
Halfway through the wood
Who can say if I’ve been changed for the better?
But because I knew you
I have been changed for good

(Elphaba) It well may be
That we will never meet again
In this lifetime
So let me say before we part
So much of me
Is made of what I learned from you
You’ll be with me
Like a handprint on my heart
And now whatever way our stories end
I know you have re-written mine
By being my friend…

Like a ship blown from its mooring
By a wind off the sea
Like a seed dropped by a skybird
In a distant wood
Who can say if I’ve been changed for the better?
But because I knew you

(Glinda) Because I knew you

(Both) I have been changed for good

I have not said that my life is the same as if I never had a family. My life is also different than if my child had somehow been someone else, someone not disabled.

Like any parent, I have been changed by having a family. But when I go, my message to my child is simple: your impact on me is measured in the handprint you left on my heart. You changed me, for good.

If you haven’t heard the song, here it is as sung by Lea Salonga and Jennifer Paz

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IACC full committee meeting tomorrow

2009-11-09T23:08:53Z

The Interagency Autism Coordinating Committee will be meeting tomorrow (November 10th) “to discuss recommendations for the annual update of the IACC Strategic Plan for Autism Spectrum Disorder Research.”

You can listen in with
USA/Canada Phone Number: 888-577-8995
Access code: 1991506

Here’s the agenda:

Time Event
8:30 Registration
9:00 Call to Order and Opening Remarks
Thomas Insel, M.D.
Director, National Institute of Mental Health and Chair, IACC
9:10 Public Comments
9:30 Approval of October 23, 2009 IACC Full Committee Minutes
9:40 Consideration of Strategies for Updating the Strategic Plan
Thomas Insel, M.D.
Director, National Institute of Mental Health and Chair, IACC

How much change to make to the current Strategic Plan?

Examples of Questions for Discussion:

Will adding or significantly re-writing chapters be helpful or confusing to the research community? Does this vary by chapter?
Will adding/deleting objectives each year be helpful or confusing to the research community? Does this vary by chapter?
Should the update include progress from the portfolio analysis for each objective as an indicator of accountability? What will this mean if objectives are re-written or deleted?

9:50 IACC Discussion of Strategies for Updating the Strategic Plan
10:30 Break
10:45 Recommendations for Updating the Strategic Plan: Discussion and Votes

Questions 1, 2, 3, 4, 5, 6 and Infrastructure Items

12:00 Lunch
1:00 Recommendations for Updating the Strategic Plan: Discussion and Votes – Continued
3:00 Break
3:15 Recommendations for Updating the Strategic Plan: Discussion and Votes – Continued
5:00 Closing Comments and Adjournment

Recovery Act Funds Support Strategic Goals for Autism Research

2009-11-09T22:56:56Z

The National Institutes of Health were given a large amount of money as a part of the economic stimulus package.

I just got the email below from the NIH autism listserve and thought some people reading here would be interested:

_________________________
The National Institutes of Health (NIH) awarded more than 50 autism research grants, totaling more than $65 million, which will be supported with American Recovery and Reinvestment Act (Recovery Act) funds. These grants are the result of the largest funding opportunity for research on autism spectrum disorders (ASD) to date, announced in March 2009.

Awards were based on the quality of the proposed study and how well it addressed short-term research objectives detailed in the Interagency Autism Coordinating Committee’s (IACC’s) Strategic Plan for Autism Spectrum Disorder Research.

“These studies currently hold the best promise of revealing what causes autism, how it might be prevented, what treatments are effective, and how service needs change across the lifespan-questions noted in the IACC strategic plan as critically important to improving the lives of people with ASD and their families. The Recovery Act funding makes it possible to do the type of innovative research necessary to find these answers more quickly,” said Thomas R. Insel, M.D., director of the National Institute of Mental Health (NIMH), part of NIH, and IACC chair.

Examples of awarded studies include:

· Catherine Lord, Ph.D., of the University of Michigan, and Somer Bishop, Ph.D., of the Children’s Hospital Medical Center in Cincinnati, will lead a two-site study to adapt the Autism Diagnostic Interview-Revised-the current gold standard for diagnosing autism-into a brief parent interview that can be done over the telephone. This new tool will help reduce research screening costs and help researchers to quickly identify potential participants for ASD studies.

· David Amaral, Ph.D., Sally Rogers, Ph.D., and Judy Van de Water, Ph.D., all of the University of California Davis, aim to expand on a previous pilot program to identify different subtypes of autism based on behavioral, biochemical, and brain imaging markers. This research may help improve future efforts to study, diagnose, and treat children based on their subtype of autism.

· Joseph Buxbaum, Ph.D., of Mount Sinai School of Medicine; Richard Gibbs, Ph.D., of Baylor College of Medicine; Gerard Schellenberg, Ph.D., of the University of Pennsylvania; James Sutcliffe, Ph.D., of Vanderbilt University; and Mark Daly, Ph.D., of the Broad Institute at MIT; will lead a collaborative network of research labs and centers using cutting-edge technologies to discover specific genes underlying autism. Their research will provide insight into the biology of autism and expose genes and pathways that constitute high priority targets for the development of novel treatments.

· Sally Rogers, Ph.D., and Laurie Vismara, Ph.D., both of the University of California Davis, aim to develop and test a parent-delivered preventive intervention for infants 6-11 months old who are at high risk of developing ASD because they have an older sibling with the disorder. The intervention will focus on reducing atypical behaviors and developmental delays to help lessen or prevent the disabling symptoms associated with ASD.

· Olga Solomon, Ph.D., of the University of Southern California, will lead a study on how race, gender, socio-economic status, family culture, and communication during clinical encounters affect the health care experiences of African American children with ASD in an urban setting. Such research may help reduce the existing disparities in ASD diagnosis and service delivery for this and possibly other underserved populations.

· Ruth Carper, Ph.D., of the University of California San Diego, seeks to fill a gap in scientific understanding of the effects of ASD in later life. By exploring age-related changes in cognition and possible protective factors, as well as the changing service needs and quality of life concerns among adults and older people with ASD, this project may reveal targets for intervention and inform public policy.

· Rob McConnell, M.D., of the University of Southern California, and colleagues will explore possible links between traffic-related air pollution and ASD risk. They will also examine genes that help process pollutants in the body among children with and without autism to determine how these genes may affect ASD risk.

· Steven Camarata, Ph.D., and Mark Thomas Wallace, Ph.D., both of Vanderbilt University, will evaluate the effects of “sensory integration treatment” on communication and social skills in children with ASD. Based on desensitization techniques, this widely used but little studied treatment is believed to help reduce children’s resistance to outside stimuli and improve the integration of sensory information.

In addition to the contributions of direct findings from these studies, much of the data will also be available to other researchers through the National Database for Autism Research (NDAR). As a tool for the autism research community to exchange research related information, this use of NDAR is likely to advance the understanding of ASD heterogeneity to a far greater degree and at a more rapid pace than would be possible through any single project.

The grants will be administered by the five NIH Institutes that currently fund autism research: the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), the National Institute on Deafness and Other Communication Disorders (NIDCD), the National Institute of Environmental Health Sciences (NIEHS), and the National Institute of Neurological Disorders and Stroke (NINDS), with NIMH taking the lead on this effort and providing more than half of the total funds. This effort is included in the $5 billion in grant awards for biomedical research supported through the Recovery Act during FY 2009, as announced by President Obama during his visit to NIH on September 30, 2009.

H1N1 really does kill people

2009-11-09T21:23:10Z

Its always a bit of a dilemma when writing an entry that doesn’t really touch on autism at all. But I have become convinced that the population beyond the autistic and autism community need to know that most of us within these communities do not support the know nothing anti-science, anti-medicine and most of all, anti-vaccine community that has a vocal minority place within our communities and that as such we owe it to our societies to vocally counter these idiots such as those at Age of Autism who spread lies and promote an age of ignorance.

I’ve heard it said by writers and readers of blogs like Age of Autism and sites like JABS that H1N1 is ‘no big deal’ and that the H1N1 vaccine is a dangerous and untested shot. Both of these things are untrue.

My partners youngest daughter (not autistic, although her eldest is) recently received an invitation to participate in the H1N1 vaccine testing which would involve three visits to the local hospital over a four week period. And over the 4 week period they would take two blood draws. This is for an ongoing safety and efficacy testing.

Swine flu is a big deal. In the UK there have been over 150 deaths since June 2009. Thats about 1 death per day.

In the US, the latest FluView weekly roundup notes 18 flu related child deaths of which 15 were due to H1N1. Fifteen in 7 days.

Next time someone says H1N1 is a ‘nothing’ issue, point them to these stats, behind which lie the dead bodies of real people.

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Hangin’ with the Wiggles

2009-11-09T20:07:05Z

If you have watched a lot of Wiggles videos (and I have watched A LOT), you may have noticed that the Wiggles are special needs friendly. They don’t make a big deal out of it which is cool. They just include some special needs kids in videos.

For anyone who is wondering, The Wiggles are an Australian rock group that sings children’s songs. They have TV shows and videos. They also tour.

This is how we met the Wiggles. When they came through our fair city, we attended a “meet and greet” session with them. Ninety minutes before the concert they spent some time with a small group of families.

We were “on the list” so we arrived early. A representative from the Wiggles checked the list and let the few families in and escorted us to where the “meet and greet” would happen.

As we waited an extremely buff “Wiggly dancer” talked to us. Very friendly. Would you expect anything less from the Wiggles?

They sat us down in one of two sets of chairs waiting, and then The Wiggles came in. Sam, Murray, Jeff and Anthony. They were very cool. They obviously had to get ready and there were a number of families in the “meet and greet” but they didn’t make anyone feel rushed. They talked to us and best of all they were very cool to the little nonverbal guy flapping wildly with excitement. There was time for pictures.

It makes for a very long day. You show up early for the meet and greet and that is an hour and a half before the show, then there is the show. Our little guy got overloaded before the show was over but all was fine once we got of the main auditorium.

Jeff, Murray, Sam, Anthony (and you too Greg!), and all the Wiggly dancers past and present: thank you!

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Time Magazine picks up “I am Autism” protests

2009-11-09T20:12:45Z

Time magazine has an article online today, ‘I Am Autism’: An Advocacy Video Sparks Protest. The article notes the protests staged in response to the I Am Autism video. (I have made my own position clear on the video Autism Speaks media campaign…I am autism, Why I don’t like “I am Autism”, I am autism video removed from Autism Speaks’ website…or is it?, The Autism Speaks bait and switch with I am Autism, and ASAN’s Letter in Response to Autism Speaks’ Exploitative Practices.)

Time starts out with the controversies in the autism communities:

Few medical conditions rival autism as a magnet for controversy. Practically everything about the disorder — its cause, its treatment, the way it is diagnosed, how it is studied — is subject to bitter dispute, sometimes to the point of death threats.

Time has comments from the Autistic Self Advocacy Network’s Ari Ne’eman.

Some autistic “self advocates” are furious over the tone of the video. “We don’t want to be portrayed as burdens or objects of fear and pity,” insists Ari Ne’eman, president of the Autistic Self-Advocacy Network, a 15-chapter group he built while attending college at the University of Maryland, Baltimore County. “Apparently, should my parents divorce, it’s all my fault,” says Ne’eman, who received a diagnosis of Asperger’s syndrome, a relatively mild form of autism, at age 12.

Also, they quote Peter Bell of Autism Speaks:

“I Am Autism,” which turns hopeful about halfway through its 3 minutes and 44 seconds, was created for a World Focus on Autism event that coincided with the opening of the U.N. General Assembly in September. “It was never intended to have a life beyond that event,” Bell said.

Bell admitted that Autism Speaks does not have any individuals with autism currently serving on its board. “We are looking at adding individuals with autism to various advisory committees,” he said. The group is also initiating a better outreach to adults with autism.

I would welcome (to put it mildly) Autism Speaks getting some autistic representation in their organization. I think “advisory committees” sounds a bit weaker than the sort of representation I’d want to see, but it is a start.

As an aside, can someone explain this part of the article to me?

He notes that other disability groups have moved away from using fear and pity in their media campaigns. (See the best and worst Super Bowl commercials of 2009.)

OK…I’ll grant you that Super Bowl Commercials are not big on Pity and Fear, but it just doesn’t seem to fit the story.

Time has linked to protest videos “I am socks” and “I am Autism Speaks”

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AoA Circulates H1N1 Hoax

2009-11-06T16:10:29Z

On October 27, AoA posted an article titled “Without Vaccine, Australia Shrugs Off Swine Flu”, By David Burd. This article consists of a string of claims clearly at odds with reality:

“(Australia has) no vaccine available for H1N1 flu…”

The University of Queensland claimed to have manufactured the first litre of an H1N1 vaccine made in Australia on June 29, 2009. Large-scale immunization began on September 28.

“Australia recently ended its 2009 `Flu Season’ (their Winter in our Summer), with 186 flu-associated fatalities of 36,991 Aussies confirmed having H1N1.”

Australian authorities openly acknowledge that their “official” numbers are very incomplete. Many possible cases have gone unconfirmed, due to limited resources and the rapid accumulation of reports. It is possible that a significant number of deaths went intentionally unreported, to circumvent government rationing of antiviral drugs. In any event, H1N1 is presumably still spreading, as the number of officially acknowledged cases has continued to grow. On October 26, the day before Burd’s article was posted, a new report acknowledged 37,039 cases, 48 more than the Oct. 21 report which provided Burd’s figure.

“Canadian front page news on flu vaccinations has transfixed Canada health authorities, prompting official suspension of regular flu vaccination programs until further notice.”

What actually happened is that authorities in one province of Canada decided not to give the H1N1 vaccine to those over 65 H1N1 vaccine production and distribution has not stopped and may accelerate. A Canadian commenting on an earlier essay of mine has said, “The only temporary suspension that occurs is when we run out of vaccines…”

“This comes from a sweeping study of Canada by research Doctors Danuta Skowronski of the British Columbia Centre of Disease Control and Gaston De Serres of Laval University in Quebec concluding Canadians receiving flu vaccinations have twice the risk of coming down with the flu, compared to those who do not take the shot.”

The study in question did not claim that receiving an H1N1 vaccine increased the risk of H1N1 infection, which is almost certainly what Burd wishes to imply. Rather, it claimed that those who had received the seasonal flu vaccine in 2008 were at higher risk of catching H1N1 during the following year. Skowronski openly admitted that an actual causal relationship is open to debate.

“(On Oct. 4) U.S. doctors offered the opinion that the Canadian doctors’ flu vaccination study was certainly wrong and must have used flawed study parameters, though (they) admittedly could not identify anything specific.”

No later than September 26, CDC spokesman Joe Quimby stated, “(S)cientists at the Centers for Disease Control and Prevention have not seen this effect in systems we have reviewed in the U.S.”

The most benign interpretation of this article is that Burd has credulously accepted a number of possible “urban legends”. I think there can be little doubt that modern “legends” are involved. I find the claim that H1N1 vaccination has been suspended in Canada, in particular, plausible as a “real” Canadian rumor. Bogus reports of current or impending changes in US government policies are a common type of “urban legend” in the US itself, and it is only to be expected that other nations would be subject to similar lore. But, such bogus reports often merge into hoaxes and scams. (A commonly aired suspicion is that individuals or groups create or promote legends about their enemies.) I am inclined to interpret Burd’s article (and AoA’s publication of it) as more in the vein of a hoax. Even if they more or less believe the story, it is hard to regard its posting as anything but cynical posturing.

Urban legends about H1N1 and its vaccines are already being noted, as in a chain email about a hospital supposedly warning staff not to be vaccinated. Such rumors can be recognized questioned promptly by looking for the following “clues”:

1. The report is more like a personal narrative than “news”, particularly in giving very specific details about people and events without specific dates, locations, etc.
2. The narrative, or a part thereof, is attributed to someone other than the immediate source or an acquaintance thereof (the infamous “friend of a friend” tale!)
3. The narrative features what I call a “phantom quote”: a sensational statement by a supposedly authoritative but unnamed or unfamiliar source.
4. Statements by named and familiar sources are not easily found or verified, for example being without a given broadcast or publication date, or especially being allegedly censored before wide distribution.
5. You have already heard a similar story with differences in key details.

By recognizing such clues, one can recognize a fundamentally suspicious story even before trying to verify it independently. Being on guard at first hearing may well be a better defense against the spread of disinformation than any amount of subsequent investigation.

David N. Brown is an AS adult living in Mesa, Arizona. He is author of the ebook The Urban legend of Vaccine-Caused Autism and several works of fiction, and creator of the autism website evilpossum.weebly.com.

Political abuse and the abuse of autism

2009-11-05T22:21:17Z

“Political autism” has emerged again in a row within the European Union (EU). Despite taking Britain into the EEC (the forerunner of the EU) in 1973, the Conservatives have always been vulnerable to disputes between their pro-European wing and the euro-sceptics who are mistrustful of European federalism and keen to defend British independence. The Labour Party has comparable factions within its ranks.

Thus political leaders of both the main parties have always had to perform a tricky manoeuvre, demonstrating their European credentials to a business community that knows where its markets lie and appealing to an electorate, many of whom prefer to blame faceless European bureaucrats for all our ills. This has led to an inconsistent approach that causes exasperation amongst some of our European partners.

This came to a head again this week over the lack of commitment by the Conservative Party leadership to the European Union. According to the Guardian

Pierre Lellouche, France’s Europe minister, described as “pathetic” the Tories’ EU plans announced today, warning they would not succeed “for a minute”.

Giving vent to frustration across the EU, which has so far only been expressed in private, Lellouche – who said he was reflecting Nicolas Sarkozy’s “sadness and regret” – accused William Hague, the shadow foreign secretary, of a “bizarre autism” in their discussions.

He said: “They have one line and they just repeat one line. It is a very bizarre sense of autism.”

This is not the first time autism has been used as a term of abuse in politics. But the National Autistic Society launched an immediate complaint

Autism (including Asperger syndrome) is a serious, lifelong and disabling condition. Comments such as those attributed to Pierre Lellouche, France’s Europe Minister, in which he seemingly suggests the Conservative Party, and in particular, William Hague, demonstrate a bizarre sense of autism are therefore extremely unhelpful.
To use the terms ‘autism’ and ‘autistic’ in a derogatory or flippant manner can cause deep distress and hurt to people affected by the condition. The National Autistic Society (NAS) is keen to address this issue, in order that these terms are not used lightly, particularly by commentators or people in positions of power or influence.
Autism is much more common than most people think and affects over half a million people in the UK. To use the terms as a criticism, for dramatic effect or to try and gain political advantage only perpetuates the confusion and misunderstanding which people with autism have to cope with everyday. This is simply unacceptable and must stop.

Today’s Times ran with the story of Monsieur Lellouche’s apology.

France’s Europe Minister has expressed his deep regret at causing offence by calling the Conservative Party “autistic”, but also blamed a mis-translation for the furore today.

Pierre Lellouche said that he was voicing his real concern about the Tories’ Eurosceptic slide under David Cameron when he reproached the party for “a very bizarre sense of autism” in an interview with The Guardian.

He also called their hostility to the European Union “pathetic” and said that the party’s policies in the European Parliament had “castrated” them. Aside from the political row, the remarks were condemned by autism advocacy groups.

However, although the minister said today his remarks were “clumsy”, he claimed that the term, which is colloquially used in French to refer to a stubborn person who does not listen, is a common term of political abuse in France.

Leaving politics aside, this derogatory use of autism reflects some very primitive and harmful ideas that still hold sway in France. Two years ago I wrote about an abusive “treatment” known as “packing” that is still going on today

“A French treatment for autistic children with psychiatric problems which involves wrapping the patient in cold, wet sheets from head to foot is undergoing a clinical trial for the first time, which critics hope will see an end to the controversial practice.

The treatment, known as “packing”, involves wrapping a child in wet, refrigerated sheets in order to produce a feeling of bodily limitation and holding, before psychiatrically trained staff talk to the child about their feelings. Critics have called the procedure cruel, unproven and potentially dangerous, but its proponents say they have seen results.”

This cruel treatment has been condemned by advocates for neurodiversity and proponents of biomedical cures alike. I have made my feelings regarding Lorene Amet’s position on vaccines and biomedical treatments perfectly clear here and, more recently, here. But I agree with her that Packing is barbaric.

It is time that the French medical and educational systems came to grips with the reality of today’s autism. Placing autistic children in hospitals, under psychiatric surveillance, refusing their inclusion in proper educational systems, refusing their access to medical examination
and treatments, violating their human rights and dignity, and even worse still allowing interventions such as “packing” to be conducted in hospital settings is unhelpful and has to be stopped.

According to the Times French autism organizations have welcomed the NAS response and are equally condemnatory of the casual use of autism as a term of political abuse in France.

French autism groups said that the affair demonstrated how offensive was the current use of the term in French public discourse.

Patrick Sadoun, a member of the Sesame Autism Association, said: “The English are right to be shocked. I congratulate a country that reacts to this. I am horrified that French politicians, at the slightest occasion, call one another autistic.”

While autism is an acceptable term of abuse autistic people continue to be the victims of unacceptable physical and psychological abuse.

This post is also available on Action for Autism.

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The ‘Connectivity’ Link between Autism and Dyslexia

2009-11-09T20:17:41Z

In an article currently in press in The Journal of Autism and Developmental Disorders, University of Louisville researcher, Dr. Manuel Casanova, provides tantalizing evidence supporting his theory of altered neural connectivity in dyslexia. Casanova proposes that the underlying deficits in dyslexia are due to an increase in long-range connections and a matched decrease of short-range connections. This piggy-backs his earlier research on autism, in which his team reported decreased long-range and increased short-range connectivity in the autistic brain, the opposite as seen in dyslexia.

In a media article in the Louisville Courier-Journal, Casanova stated that this underlying ying-and-yang of autism and dyslexia is a novel theory of relatedness of the two conditions, possibly leading to an explanation of common underlying mechanisms, as well as potentially leading the way to additional treatments for both conditions utilizing Transcranial Magnetic Stimulation (TMS). Already, results from Casanova’s rTMS autism trials have shown promising results in reducing sensory hypersensitivity and general social anxieties, while at the same time retaining those abilities and talents people in the online autistic community have continually expressed concern over losing if treated.

Casanova also promotes the idea that conditions like autism and dyslexia are “differences” and not necessarily “disabilities”. “They just have different cognitive styles,” he says—a stance which those in the pro-Neurodiversity camp have long since supported.

In another article currently in press in the journal, Medical Hypotheses, this author and Casanova have published a more coherent theory briefly exploring the complementary wiring of autism and dyslexia, proposing that the conditions exemplify the extremes of a diverse human bell curve of neural connectivity. The article, rather than labeling them as discrete conditions, suggests that autism and dyslexia are part of the typical diversity of humanity. The bell curve idea, while not new to the study of trait inheritance, is a novel perspective linking autism and dyslexia, a perspective in which studying peoples’ similarities rather that their differences may lead to a greater understanding of diversity and help remove such developmental research from the pathology paradigm of traditional medicine.

Individuals familiar with autism may be aware that dyslexia can also co-occur with autism and therefore may be wondering how the two conditions can be the “same” and “different”. In the new 2009 paper, this concern is addressed, saying that while autism and classic dyslexia are anatomical opposites, the underlying neurobiology of either extreme can cause a disability in reading. Therefore, while classic dyslexia is due to increased long-range/decreased short-range neural connections, the dyslexia associated with autism is due to increases in short-range/decreases in long-range white matter fibers. Since autism and dyslexia are still currently defined by behavioral criteria, this explains how it’s possible to have similar behavioral traits and divergent anatomies.

Casanova plans to continue to research and publish on the idea of the yin-and-yang of conditions like autism and dyslexia. With recent grant funding from the NIH, he also intends to continue exploring the benefits of TMS in improving peoples’ lives while helping them retain the positive aspects of their personalities that make each person a unique part of the human continuum.

References:

Casanova et al. (2009). Increased white matter gyral depth in dyslexia: Implications for corticocortical connectivity. Journal of Autism and Developmental Disorders, in press.

Casanova & Trippe. (2008). Radial cytoarchitecture and patterns of cortical connecitivity in autism. Philosophical Transactions of the Royal Society B, 364(1522), 1433-1436.

Williams & Casanova. (2009). Autism and dyslexia: A spectrum of cognitive styles as defined by minicolumnar morphometry. Medical Hypotheses, in press.

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Bye bye Aspergers?

2009-11-09T18:46:30Z

The recent article in the New York Times concerning the possibility of the ‘vanishing’ of Aspergers Syndrome from the next version of the DSM (due in 2012) only asks two people (Temple Grandin and Ari Ne’eman) for their opinions. Nothing wrong with that as such but I’d like to hear what the AS community at large thinks.

Temple thinks that the AS community is too large and too vocal to simply disappear but I think she’s missing the point somewhat. The point is (in my opinion) neatly encapsulated by Ari. He points out that AS isn’t disappearing, its simply formally becoming ‘part’ of autism. Something the vast majority of the autism and autistic community have always known it is. To answer Temple directly, the AS community isn’t disappearing, its just finally taking its rightful place alongside the others in the autism community.

NB: this post first erroneously stated Temple Grandin had an AS diagnosis. This is now corrected.

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