Aug 01

Brain Fitness, Alzheimer’s, and Autism

An amusing and informative essay on the brain appeared in a recent (July 29) issue of The New Yorker. Entitled “Mentally Fit: Workouts at the brain gym” by Patricia Marx, the article chronicles her investigation of the “brain fitness” industry. The article is partly behind a paywall, so if you’re not a subscriber you can only read about 20% of the essay, but that’s enough to give you a flavor for where she is going with this.

Although my interest in reading about the brain and neuroscience is fueled by my obsessive need to understand myself through the lens of autism, I find that most of what is written about autism is really pretty bad. So I learn more about autism by reading about general brain functioning and then figuring out how it applies to me or to other autistic people I know, and to other things I’ve read or learned.

This well-written account is a case in point. As it happens, I am currently a subject in a brain study at the TMS Lab of Beth Israel in Boston. This study is similar to one I did four or five years ago with the same researcher, Dr. Lindsay Oberman. My friend John Robison also participated in that study, and he is the one who originally got me interested in the work of the TMS Lab. John has written his own account of what he learned from the study. At the end of that post you will find links to other comments he has made about TMS.

In a nutshell: Study Number One (4-5 years ago) decidedly proved that autistic brains have more neuroplasticity than neurotypical brains. This can be good (ability to process vastly more information, better long-term memory, ability to learn new things, and more) or bad (sensory overload, resistance to change and difficulty with transitions, and more).

MFW in TMS Lab

MFW in the TMS Lab

Study Number Two (the one currently underway) is an attempt to determine whether autistic brains age differently from neurotypical brains. Specifically, one of the issues being studied (besides looking for changes in plasticity or anything else that is measurable) is whether the superior plasticity of autistic brains naturally protects autistic people from Alzheimer’s. One of the control groups being studied is an age- and gender-matched group of neurotypicals and another is a group of Alzheimer’s patients. As Lindsay explained to me, “the Alzheimer’s brain is the ultimate elastic brain.” (In this context, elastic is the opposite of plastic — an elastic brain is resistant to forming new memories.)

[Disclaimer: I am not a neuroscientist, so my understanding of what is going on in these studies may very well be incomplete. I am simply reporting my interpretation based on conversations I've had over the past several years, as well as reading I've done.]

Back to The New Yorker article: these are the subjects Ms. Marx addresses: neuroplasticity and Alzheimer’s (dementia in general, really, but she mentions Alzheimer’s many times). Specifically, can we (humans) maintain or even improve our neuroplasticity (ability to learn and remember) as we age, and therefore (perhaps) avoid the deterioration associated with dementia, while improving our enjoyment and quality of life?

In the article, the author worries that “…by the advanced age of twenty there is a very good chance that our prefrontal cortex (the brains of the brain, responsible for problem-solving, decision-making, and complex thought) has already begun to shrink.” And thus begins the decline. But, wait, maybe not. I hadn’t heard this particular assertion before (the shrinkage thing), and in fact, from what I have read, my impression is that the prefrontal cortex continues to develop well into our twenties and perhaps even up to age 30 or more. And, from an evolutionary point of view, perhaps that is sufficient. After all, until quite recently (given the lifespan of our species), 30 years was about the life expectancy for human beings. It is only in the last few thousand years, with the advent of agriculture, that our life expectancy has grown, and in the last few hundred years that extension has accelerated. And, perhaps, living longer has given us the luxury of having a few brains around that might take even longer than 30 years to mature. Ahem. Such as autistic brains. This is mostly speculation on my part, of course, but consistent with what I know. As more studies are done, such as the one I am in now, we will learn more.

The balance of the article is quite entertaining and educational. The main conclusion that I take from it is that keeping one’s mind active is hugely important (not the first time we’ve heard this, to be sure), and that it is not sufficient to repeat the same brain exercises ad infinitum. The author makes the point that if one becomes, for example, very adept at doing crossword puzzles, that activity ceases to be stimulating. It instead becomes routine and almost automatic. The key is to take on new and different challenges with some regularity. I find this insight to be extraordinarily comforting, since all my life I have chided myself for being such a dilettante and dabbler. I guess my brain just craves stimulation and I was doing the right thing by it.

 

Jul 30

The Art of Staying Focused

In a recent (June 2013) short and informative interview published in The Atlantic, James Fallows (JF) asks Linda Stone (LS) to explain what she means by such phrases as “continuous partial attention” and “attention strategy.”

Many of us who are autistic have given much thought to the concepts outlined in the interview. For me, it rang a lot of bells, so when the word “autism” appeared I wasn’t surprised.

LS: …Kids learn empathy in part through eye contact and gaze. If kids are learning empathy through eye contact, and our eye contact is with devices, they will miss out on empathy.

JF: What you’re describing sounds like a society-wide autism.

LS: In my opinion, it’s more serious than autism. Many autistic kids are profoundly sensitive, and look away [from people] because full stimulation overwhelms them. What we’re doing now is modeling a primary relationship with screens, and a lack of eye contact with people. It ultimately can feed the development of a kind of sociopathy and psychopathy.

JF: I’m afraid to ask, but is this just going to get worse?

LS: I don’t think so

She shows an amazing (and unusual) understanding of how autistic kids (and adults, btw) have a different strategy for paying attention. For many of us, a glance suffices to give us all the information we need, and a full-bore gaze will provide too much information and create in us an inability to do other simultaneous tasks that also require our attention, like listening or speaking.

For more on this, see my post Gaze Aversion: An Autistic Adaptation.

Interestingly, this topic came up in an all-day seminar on autism that I attended last week at Brandeis University. One of the speakers was David Tesini, a professor of Pediatric Dentistry at Tuft University. He described some of the challenges of providing dental care to autistic children, and said that he felt it important to have direct contact and communication with the patient, and not to have conversations relayed through the parent or other care-giver. He said one of the ways he would know a kid was paying attention was if he could get the child to look at him. 

One of the members of the audience challenged Dr. Tesini on this, saying that her autistic son had explained to her that eye contact can be distracting. I later told him that his objective (having direct communication) was excellent and much desired by autistic people, but that there are probably other ways for him to measure the level of attention he is getting. He was very appreciative of the feedback we gave him, and promised to learn more and adjust his practice and teaching.

From understanding comes acceptance.

 

 

Jul 24

Slides from a Workshop on Neuroexceptional Couples

Eva Mendes and I led a workshop at AANE’s Annual Conference for Adults. The theme of the Conference was Advocacy, and the keynote address was a 2-hour tour de force by our beloved Ari Ne’eman of the Autistic Self Advocacy Network (ASAN).

Our workshop was focused on relationships. Any relationship (romantic or otherwise) is a challenging enterprise, but it is even more so if one or both of the partners is neuroexceptional (not neurotypical). The most common combination we encounter is a man who is Aspergerian and a woman who is neurotypical. But there are many other permutations. We have enjoyed having same-gender couples as well as partners who were both Asperger’s.

In keeping with the theme of the conference, we emphasized self-advocacy in a relationship. This requires self-awareness as well as sensitivity to the needs of one’s partner.

Here is a link to the slides I used. In the course of the workshop, we covered most (though certainly not all) of the topics listed here. The flow of the workshop, however, was not lecture-style, but was a rather free-form discussion about what was on people’s minds. Eva did a good job of drawing people out, and we shared some of our experiences of co-leading couples support groups. I talked about my perspective, as an autistic person who gained most of my insight into autism fairly late in life.

There was a lively discussion, with people asking questions and sharing their own experiences. There were even a couple of people in attendance who had been part of one (or more) or our couples support groups.

Please keep in mind that this is all copyrighted material, and is provided here for educational purposes only. Do not copy or reproduce the slides, but feel free to share the link, and to comment on them or ask questions about some of the more obscure ones. The cartoons were used to illustrate various themes that commonly come up in the support group settings, and I find that many people laugh because they see themselves (or their partners) in them.

 

Jul 17

Autism Acceptance: My Thoughts Captured in an Interview

Paula Durbin-Westby has been publishing a series of interviews with autistic people on the subject of Acceptance.

Mine is the latest one that she has posted on her Autism Acceptance Day blog.

Please take a look and tell me what you think. Also, poke around her site for many useful links and lots of good information.

The The Thinking Person’s Guide to Autism has also published a link to the interview on their Facebook page.

Sample:

What do you think about autism acceptance and awareness, other than your efforts with the Massachusetts Autism Commission?

Awareness has played a huge role in my own life in recent years. Life is much better for me now that I am aware that I am autistic. For me, too, awareness has led, slowly and painfully at first, later with much enthusiasm, to acceptance. I now embrace being autistic, and realize that my difference has been a source of much of the joy in my life, and not just some of the sorrow. I’m still a bit buffaloed by the Executive Function thing, and am working hard to improve my abilities there. 

In many areas of my life, awareness and acceptance have led to an inner peace that had always been elusive to me. I had always wondered why so many of the sensory experiences that bothered me didn’t seem to affect those around me. Now that I understand that these annoyances arise from the way my autistic brain processes things, I have learned to either shrug them off (acceptance) or to take steps to reduce the anxiety and stress they produce. I can, for example, avoid places with bright lights or excessive noise. I now feel different, instead of weird, or that there is something “wrong” with me.

Jul 02

Caveat Emptor: TMS as Snake Oil

On the eve of my next visit to the TMS Lab at Beth Israel in Boston*, I came upon this blog post:

TRANSCRANIAL MAGNETIC STIMULATION FOR AUTISM

 

I’ve added a comment to that post, so won’t repeat myself here, but I did want to point out the very valid caveats they list. They talk about a clinic that is offering TMS as a “treatment” for autism, and why this smells of snake oil.

I wonder if I will live long enough (I hope so!) to see an end to the search for a “cure” for autism and the beginning of a genuine effort to figure out how to help autistic people fit into a non-autistic world, and to be accepted for who we are.

 

* formally, the Berenson-Allen Center for Noninvasive Brain Stimulation at Beth Israel Deaconess Medical Center

May 22

My Testimony to the Massachusetts General Court’s Joint Committee on Children, Families and Persons with Disabilities on May 21, 2013

Testimony of

Michael F. Wilcox
217 East Road
Alford Massachusetts 01266
mfw {at} mfw(.)us

21 May 2013

to the Committee on Children, Families and Disabilities

House Bill 78
An Act to permit the Department of Developmental Services to provide services to adults with developmental disabilities

My sincere thanks to the Committee for holding a hearing on this critically important bill. I come before you in many roles, one as a member of the Autism Commission. As I’m sure you know, this bill represents the highest priority recommendation of the Commission.

I also serve on the Board of Directors of the Asperger’s Association of New England (AANE) and its Advocacy Committee. This bill also represents AANE’s highest legislative priority this year, and its implementation would be of critical assistance to many of the thousands of our members who live, work, or go to school in Massachusetts.

I have also been active for the last two years in the Cross Disability Advocacy Coalition (CDAC), a program of the Disability Law Center, and this bill has wide support in the disability community. Jonathan Gale, the coordinator of the CDAC, could not be here today, and he asked me to give you his thumbs-up.

But the most important qualification I present to you today that I hope will give greater weight to my words is that I am autistic. I can tell you first-hand what it is like to struggle to get by in an alien world. I attended public schools in Stockbridge before the days of Special Education. I always knew I was different, and I wondered why I found some things so hard to do, and some things so terribly easy, compared with the kids around me.

I self-diagnosed Asperger Syndrome eight years ago, and that was a life-transforming experience. I wish I had known many years ago that I am autistic, but this just wasn’t possible. I could have used some of the services that this bill will make possible. Not all the time, and certainly not for my entire life, but just to help me out during a rough patch here and there.

Somehow, I managed well enough, in many ways, although my path was more difficult than it might have been.

I did not transition well into the adult world after high school, and lived in poverty for a time, doing odd jobs and renting a room in Springfield, where I had to shake the cockroaches out of my shoes in the morning before getting dressed. I managed to go to college part-time while working. I excelled as a scholar, graduating at the top of my class, as the President of the Honor Society, but it took me nine years to do it, and another four years to earn my Master’s degree in Economics.

From there, I created a career for myself that I enjoyed tremendously, working in finance and investments. I worked for many years on Wall Street, including a stint with Morgan Stanley, where I rose to be a Principal. I also spent time here in Boston as a Vice President of State Street Bank.

So, yes, I have a résumé that anyone would be proud of, but that also represents a veneer that glosses over the difficulties and heartaches that have marked my life. I did not understand office politics, and did not play the game well, nor was I interested in doing so. Quite frankly, if I had not been so brilliant in the technical aspects of my work, and so popular with clients, I would not have done nearly so well in the business world.

And all of these accomplishment do not say anything about my personal turmoil; the long periods of severe depression (which I now know are common for autistic people), the friendships and romances that ended before I wanted them to, for reasons that I did not understand. And the fact that I was fired from more jobs than I quit.

Being autistic is not just a struggle, although it is that. Autism is also a pathway to joy. I now know why it was that I was entranced by the poetry of Khalil Gibran when I was young.

Your joy is your sorrow unmasked.
And the selfsame well from which your laughter rises was oftentimes filled with your tears.
And how else can it be?
The deeper that sorrow carves into your being, the more joy you can contain..

It seems that the autistic personality is composed of such pairs of polar opposites. Just as we have the capacity for great sorrow, we also have the capacity for great joy. We are paranoid and pessimistic, and we are also stubbornly persistent and confident. Such are some of the faces of this multifaceted jewel we call autism.

Over the past few years, I have received an enormous amount of help from the Asperger’s Association, from my autistic friends, and from our allies. I wish I had been given the opportunity to receive this kind of assistance years ago. I can’t change history, but it is never too late to learn new ways of behaving and thinking. I am now more at peace with myself and more comfortable in the world. I am living proof that one can teach an old dog new tricks.

I am now in a position to help others, and I enjoy doing that. I engage in public speaking and I consult with parents, both singly and in small groups. I have a blog and I am active in the social media. I help run support groups for couples who are dealing with the impact that autism/Asperger’s can have on a relationship. I get a great deal of satisfaction from all of this, and I only wish that more people had access to the kinds of programs that I know are helpful to the people whom I encounter.

The legislation under consideration here, House Bill 78, represents a huge step in the direction of providing services such as the ones that have helped me to understand and to deal with the implications of my own autism.

I strongly urge its passage, and I thank you for your consideration.

 

House Bill 77
Concerning establishing an integrated confidential data system among state agencies to track information on autism.

In my work on the Autism Commission, I became keenly aware of how little hard data we have in the Commonwealth on the provision and the potential future need for services having to do with autism. Even the limited statistics that we were able to garner from various sources used inconsistent definitions and categories. The statistics in our report represent our best estimates, based on extrapolations and comparisons with data from other states and federal agencies.

House Bill 77 addresses this issue, which represents one of the highest priority recommendations of the Commission.

We don’t envision a complex and costly system, but a coordinated and consistent effort to keep track of the number of people now being served, and with which services, as well as statistics concerning indicators of future demand.

Needless to say, information like this is critical to planning and to projecting potential future expenditures, as well as the impact of beneficial outcomes.

In the area of employment, for example, the Mass Rehab Commission (MRC) is aware that a large percentage, perhaps even a majority, of the people it serves are autistic. As more autistic students age out of their transition years, it is likely that the need for specialized employment services will grow.

It is critical to MRC, in planning staffing levels, expertise, and training to have a better handle on approximately how many people will need these services. And, successful outcomes will depend on MRC having the kind of programs that will address the particular needs of autistic people to learn such things as interviewing skills, how to deal with office politics and other social interactions, and a myriad of related topics. Often, their clients are bright and well-qualified, but do not succeed in job placements for reasons having nothing to with their technical skills.

Similar examples could be given in the areas of independent living and higher education.

As the saying goes, all of this is not rocket surgery. This is probably one of the easiest and least costly things that you are going to be asked to do today. Thank you for your support for this critical effort.

 

May 20

DSM-5 Published to a Chorus of Criticism

The long-anticipated revision to the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM) has been published.

Although the exact wording of many sections of the book had not been widely known pre-publication, the essential features of its changes have been known for some time now. And the drumbeat of criticism has been constant. In a view from across the pond, where the DSM is not officially used, this article from the Guardian summarized many of the critiques that have already appeared elsewhere.

The DSM has been called many names, and in some circles is referred to jokingly as the “Drug-Selling Manual.” As the Guardian points out,

Though not used in the UK, … the US manual has global influence. It defines groups of patients, and introduces new names for disorders. Those names can spread, and become the norm elsewhere. More importantly, the categories redefine the populations that are targeted by drugs companies.

With characteristic British understatement, the article goes on

Criticisms have come from almost every corner.

And lists quite a few, among them these:

Nick Craddock, professor of psychiatry at Cardiff University, and director of the National Centre for Mental Health in Wales, said … DSM-5 was flawed because definitions of disorders were sometimes changed on the basis of too little fresh scientific evidence.

and

Last month, Thomas Insel, director of the National Institute of Mental Health, declared that the organisation would not use DSM-5 definitions to set its research priorities. Writing about DSM-5 on his blog, he said: “The weakness is its lack of validity. Unlike our definitions of ischaemic heart disease, lymphoma, or AIDS, the DSM diagnoses are based on a consensus about clusters of clinical symptoms, not any objective laboratory measure.” Instead, he said the NIHM would lay the foundations for a new classification system, based on brain imaging, genetics, cognitive science and other research.

“We need to begin collecting the genetic, imaging, physiologic, and cognitive data to see how all the data – not just the symptoms – cluster and how these clusters relate to treatment response,” he said.

My personal criticism, as an autistic person, is more fundamental. I do not believe that autism belongs in a “Manual of Mental Disorders” because I don’t view it as a “disorder” but as a different order; a brain structure that creates a different way of being in the world.

So far as I know, there has not yet been discovered any drug that can “treat” the underlying “symptoms” of autism. For good reason, I think. One might just as well “treat” left-handedness with a drug.

All of this is not to minimize the difficulties of being autistic. Believe me, I know, from personal experience, how debilitating a disability autism can be. But it is not a mental health condition, and it does not deserve to be pathologized by being placed in the DSM.

 

 

Apr 29

It’s Time to Stop Pouring Research Money Down the Genetic Sinkhole

The Autistic Self Advocacy Network (ASAN) and others have protested the disproportionate amount of money that is spent on “basic” research (i.e. trying to understand the underlying neurobiology of autism) versus how much is spent on “pragmatic” research (learning how to make effective services available to improve the quality of life for autistic people). In 2010, according to the federal government, $408 million was spent in this country on autism research.

As just one example of the disproportionate spending, over $50 million was spent on identifying “Genetic Risk Factors,” whereas only $6 million was spent on researching “Lifespan Issues” (i.e. helping autistic adults).

Such lop-sided funding might be justified if genetic research held out great promise for helping autistic people, but there is no evidence to support that idea. Quite the opposite, in fact.

In a recent (February 15, 2013) post in Mad in America, Jay Joseph has written a synopsis of his ongoing critique of a scientific dead-end. Namely, the Quixotic search for the gene(s) that “cause(s)” any number of psychiatric conditions.

His lede is straightforward:

Two generations of molecular genetic researchers have attempted, yet failed, to discover the genes that they believe underlie the major psychiatric disorders.

Although autism is becoming more widely understood as a neural difference, not a “psychiatric disorder,” it is one of the profiles that is subject to this intense witch hunt. In his article, Joseph mentions autism in passing, as an example of one of the many areas where genetic research has been a failure.

Science writer John Horgan wrote about these non-replicated claims in 2004, and the point is even more relevant today with an additional nine years of gene finding failures behind us:

“Over the past 15 years or so, researchers have announced the discovery of ‘genes for’ attention-deficit disorder, obsessive-compulsive disorder, manic depression, schizophrenia, autism, dyslexia, alcoholism, heroin addiction, high IQ, male homosexuality, sadness, extroversion, introversion, novelty seeking, impulsivity, violent aggression, anxiety, anorexia, seasonal affective disorder, and pathological gambling. So far, not one of those claims has been confirmed.”

The state of the art, such as it is, in genetic research relative to autism seems to me to have found dozens, if not hundreds, of genes that are “associated” with autism. A recent article in The Lancet reports on results of an analysis done by the “Cross-Disorder Group of the Psychiatric Genomics Consortium.” to study genetic similarities among “autism spectrum disorder, attention deficit-hyperactivity disorder, bipolar disorder, major depressive disorder, and schizophrenia.”

Interpretation: Our findings show that specific [genetic markers] are associated with a range of psychiatric disorders of childhood onset or adult onset. In particular, variation in calcium-channel activity genes seems to have pleiotropic effects on psychopathology. These results provide evidence relevant to the goal of moving beyond descriptive syndromes in psychiatry, and towards a nosology informed by disease cause.

Without delving into the meaning of the technical terms here (subject for a future post), the take-away is that, in the view of this group of scientists, autism (as well as each of the other “disorders”) is a “disease” that has a genetic “cause.”

This, in my view, is not science, but advocacy. Science takes a bunch of observations (data) and formulates an hypothesis to explain them. Advocacy takes a conclusion and seeks to find data to justify it.

But the problem is larger than that. Science understands (if one can even be so generous as to use that word) a very tiny fraction of the human genome. Most research to date has focused on the 1% or so of DNA that codes for proteins (i.e. has the genetic instructions for making the proteins that constitute the human body). The other 99% remains pretty much a complete mystery, although progress is starting to be made in analyzing that. The ENCODE project (ENCyclopedia Of DNA Elements) is still very much in its infancy.

“Originally genetics was focused on the one percent,” said bioinformaticist Mark Gerstein of Yale University, referring to geneticists’ early concentration on genes that code for proteins, which represent just a a tiny fraction of the genome’s myriad parts. “We’re shining a light on the 99 percent.”

Jigsaw puzzle images have become associated with autism, for better or worse. I don’t know if autism is a puzzle so much as a mystery. When I think about the 99% of the human genome that we barely understand (other than that it has some functions that are essential to making us who we are), I get a mental image of reaching into a jigsaw puzzle box that has 1,000 pieces, pulling out, at random, 10 pieces, placing them on a table, and trying to figure out what the 1,000-piece picture looks like.

And, ultimately, even if we can figure all of this out, what purpose does this inquiry serve? One could also perhaps figure out the “cause” of left-handedness. But of what value is that? Shouldn’t we be more focused on observing that left-handed people have difficulty using some of the tools that were designed for a predominantly right-handed world, and provide left-handed scissors and can openers and such?

Or, maybe there is a “gene therapy” that could “cure” left-handedness so that we don’t have to go to all that trouble? Left-handedness, like autism, is a natural part of the human condition, and we should embrace the diversity that they represent.

I’m not left-handed, but I am autistic, and I’m proud of that and thankful for it. For most of my life, I didn’t know what that meant, but now that I do, my life is much better. I dream of a time when understanding and acceptance will make life easier for all autistic people. Genetic research may play some small part in that, but we have more important things to do right now.

 

Apr 17

Okay, I’m Superman

It pains me to write these comments, critical of one of my favorite neuroscience writers, but it must be done.

V.S. Ramachandran has just published an online article that has taken an enormous amount of flak on Twitter, some of that from me. Also, the very first comment to the article cites a study that seems to indicate his claims are questionable at best.

UPDATE 4/19: One of my tweeps told me that the link just given was a transcript of an old interview, so he had complained. Evidently, the editor took it down. I’m not sure why, since as far as I know, it still represents Ramachandran’s point of view. The text of the interview appears here, but seems also to have generated some controversy on that site, so it could be removed from there as well, I suppose.

His punchline is

So if you make a list of all the properties, emotional empathy, imitation, pretend play and you look at all those functions of mirror neurons and make a tabular column of the functions that are deficient in autism, there’s almost a perfect fit.  This is what led us to suggest over 10 years ago that mirror neuron dysfunction might be the basis of autism, it might be one of the major causes of autism.

Really? A “cause” of autism? Based on my own experience, I can see that, having an autistic brain, my mirror neuron functioning might be impaired much in the same way many other brain functions are hindered. Sensory overload. But “dysfunctional” — I don’t think so. And, I think he has his causality backwards.

He then modestly claims that his speculation that “mirror neuron dysfunction might be the basis of autism” is

better than any other theory that’s around regarding autism

Really? Really?

Perhaps he also has a theory regarding lefthandedness.

Based on his descriptions of autism, it seems to me he doesn’t understand what it is like to be autistic. In the article, he says that autistic people

are lacking in empathy, … unable to adopt somebody else’s point of view … [and there is] also a lack of pretend play

These things are all completely untrue, in my experience.

I wrote a post a month or so ago about empathy. There is also a huge catalog of writings on this topic. I don’t know a single autistic person who doesn’t experience empathy (aside, perhaps, from those who are also alexithymic). As I noted in my post, autistic people may have trouble expressing their empathy, and so give the appearance of not being empathic, but that is a communication issue, not one of empathy.

And then there’s the old “theory of mind deficit” myth — these things are pretty much of the same piece.

And lack of pretend play? Not for me, I can assure you! Growing up, I was the oldest of five siblings, and was often the oldest in a group of kids eager to play. They would look to me to decide what we would play that day — would it be Cowboys and Indians? (and who would be which?) or would it be building a fort? or digging a hole to China? I got to decide. And I didn’t need playmates, either. I had plenty of imaginary friends.

According to Ramachandran,

Pretend play by definition in normal children or non-autistic children requires that you put yourself in the shoes of that doll or that action figure.  Pretend you are Superman.  Suspend reality for a short while and pretend you are Superman.  This autistic children are incapable of doing…

Superman was my favorite comic book and TV show when I was young. I didn’t have to pretend to be Superman. I was Superman. I even had a Superman costume, including the cape. I could fly.

All of these myths about autism may have been believed ten years ago, when Ramachandran devised his theory. But, he should know better than anyone that science evolves rapidly, and there are fewer and fewer people who believe them to be so.

Part of the problem, I believe, is that what is in the common wisdom surrounding autism is based in some large measure on ancient studies that were done in the days when autism diagnoses were rare. Only children were diagnosed, and only those who exhibited very noticeable behavioral differences. Kids who couldn’t speak, or who were  aggressive or self-injurious. Many of these children also had intellectual impairment.

It was thought, not too many years ago, that 70% to 80% of autistic kids were also intellectually impaired. Over time, researchers came to realize that the number was probably the reverse of that, and even more recently it has become clear that there is no connection between autism and intellectual or functional capacity.

This, in my opinion, is why we have seen the “explosion” of autism diagnoses. We have been here all along, but there was little awareness that most autistic people had learned to “fit in” and adapt.

I have a lot more to say about all of these things, including mirror neurons, but I’ll leave it at that for now. I simply felt a need to protest the appearance of this antiquated speculation that seems not to be based on our current understanding of autism.

The Ramachandran article, by the way, appears to be a transcript of a video which appears on the same site.

Mar 28

Report of the Massachusetts Special Commission Relative to Autism

Michael and Dave at the State House

 

Yesterday, a formal ceremony in the Massachusetts State House made public a report by the Massachusetts Special Commission Relative to Autism, more commonly known as “The Autism Commission.”

The picture here was taken after the event by Dania Jekel, Executive Director of AANE, showing Dave Harmon and me outside the State House. Dave and I are Board members at AANE. Dave served as co-chair of the Adult Services subcommittee of the Commission. Dania and I, as well as AANE Board member Dan Rosenn, served as Commissioners.

Although the report was formally published yesterday, its recommendations had been made available earlier in the year, and two months ago AANE collaborated with the Disability Law Center, the Arc of Massachusetts, and others to file two bills designed to implement the top priorities of the Commission.

House Bill 78 (and identical Senate Bill 908) seeks to expand eligibility for services provided by the Massachusetts Department of Developmental Services to include more people with developmental disabilities.

Senate Bill 909 (and identical House Bill 1794) would require the Department of Mental Health to provide services to people with an autism diagnosis, if needed.

An Executive Summary of the report lists all the top priority recommendations on its last page.

The full report is 174 pages long.

An abbreviated version contains 62 pages.

All of this information is provided by me in my personal capacity, and is not meant to imply an endorsement by the Commission, AANE, or any other organization. I am interested in promoting dialog about the issues raised in this report, and would welcome comments here on my blog.

 

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