Mar 10

Vaccine Scandal is in the News Again

According to a report on MedPage Today, the High Court of Justice in London has cleared the name of one of the authors of the fraudulent vaccine-autism-link paper published in 1998 by Lancet (and formally retracted by that journal only recently).

One of the other authors, Andrew Wakefield, remains under a cloud. It is amazing how much damage one person has done.

Update March 13: There is an article on an Austin website about the libel suit filed by Wakefield against the reporters who outed him. This might be funny (if pathetic) if it were not for the real harm that has been done in the world.

And, much, much more here in an article on the website of The Thinking Person’s Guide to Autism.

Mar 02

The Aspergerian (aka Clueless) Dating Game

Feb 28

Atypical white matter possible precursor to autism

Wow! This is “science”? Notice any bias in a statement like this?

According to researchers, children with ASD had higher fractional anisotropy “followed by slower change over time relative to infants without ASDs.” Radial and axial diffusivity also seemed to be associated with ASD. These results appear to indicate that infants with aberrant white matter development go on to develop ASD.

I have no problem with the title of the article linked above. But in the body of the article, the words “atypical” and “autism” disappear and are replaced with “aberrant” and “ASD.” Use your own favorite dictionary, but one I found defines “aberrant” as “straying from the right or normal way.” That’s very judgmental, as opposed to “atypical” which is much less value-laden. And, of course, the “D”  in “ASD” stands for “disorder” — which is also a very judgmental word. Autism, in my view, is not a “dis”order but a “different” order. Neither better nor worse, but certainly different. It is, however, clearly a disability in a world that demands conformity with the way the other 97% of the population thinks and acts.

When you strip away all of the loaded language, what this study confirmed is that the autistic brain has more white matter and develops more slowly than the (neuro)typical brain. This is hardly news, but has been known for years. But I guess if you accept a research grant, you have to publish something if you’re to have any hope of getting more grants, and the more incendiary you can make the language, the more you are making the case that more research needs to be done to get at the “cause” of this serious disorder.

What malarkey! How about some research into the implications this has for the way that autistic people think and learn? Perhaps that way we could develop training programs to help neurotypicals think like autistics.

Feb 27

Crime and Punishment in America

This letter in the February 27 New Yorker caught my eye. The author’s affiliations are not stated, though given The New Yorker’s reputation for vigorous fact-checking, I’m sure her credentials were vetted.

She says that in her “work with incarcerated women” she encounters a large segment of inmates who are serving time simply to pay off minor fines. So, if true, it seems that in 21st-Century America, we still have debtor’s prison, and money does buy better justice. How shameful!

Feb 26

A couple of fascinating timelines

I’ve enjoyed poking around two websites that have timelines of events relating to disabilities.

One is from the Lives Worth Living website (the name of a PBS documentary which has received high praise in the disability community).

Some of their material is taken (with attribution) from another, more detailed timeline found on the National Consortium on Leadership and Disability for Youth (NCLD/Y) website.

Both of these are extremely interesting to me, since I’m relatively new to the world of disabilities and have not been aware of much of the history that is told here. It’s encouraging to see how much progress has been made, but it’s also clear we have a long way to go!

This caught my eye, on the (NCLD/Y) website:

“1800: First Medical Classification of Mental Disorders

Phillipe Pinel writes Treatise on Insanity in which he develops a four-part medical classification for the major mental illnesses: melancholy, dementia, mania without delirium, and mania with delirium.”

In light of the recent controversy over the DSM (the Diagnostic and Statistical Manual of Mental Disorders), it interests me to learn of the development of the concept of “mental illness” (a term no longer in use). [See also this excellent statement.]

Not satisfied with the simple description of Pinel’s work, I of course did a web search that led me to, among other things, a rather lengthy academic paper, reproduced on the NIH website. I guess I could make a full-time job of studying this history, but I’m afraid I’ll have to do it a little at a time. Perhaps I can circle back at a later date and report on what I’ve learned.

UPDATE: in doing further research, I discovered another timeline, and some of the dates here are not quite the same as in the others.

Feb 26

Bill Moyers Essay: Are Immunization Exemptions Fair to All?

This is an excellent commentary by Bill Moyers.

With clips from a movie, excellent graphics, and his usual dispassionate appeals to reason, he makes his case a convincing one. It’s only 5 minutes long, and well worth a watch!

If you’re interested in learning more, you could do no better than to read Seth Mnookin‘s book on the subject, and to follow his blog posts.

Jan 31

Statement on DSM-5 by ASAN and ASA

Joint
ASAN-Autism Society Statement on DSM-5

Dear Friend, 

As two national organizations committed to working to empower the autism and Autistic communities today and into the future, the Autism Society of America and the Autistic Self Advocacy Network issue the following joint statement regarding the definition of Autism Spectrum Disorder within the DSM-5:

The autism spectrum is broad and diverse, including individuals with a wide range of functional needs, strengths and challenges. The DSM-5’s criteria for the new, unified autism spectrum disorder diagnosis must be able to reflect that diversity and range of experience.  

 Over the course of the last 60 years, the definition of autism has evolved and expanded to reflect growing scientific and societal understanding of the condition. That expansion has resulted in improved societal understanding of the experiences of individuals on the autism spectrum and their family members. It has also led to the development of innovative service-provision, treatment and support strategies whose continued existence is imperative to improving the life experiences of individuals and families. As the DSM-5’s final release approaches and the autism and Autistic communities prepare for a unified diagnosis of ASD encompassing the broad range of different autism experiences, it is important for us to keep a few basic priorities in mind.

 One of the key principles of the medical profession has always been, “First, do no harm.” As such, it is essential that the DSM-5’s criteria are structured in such a way as to ensure that those who have or would have qualified for a diagnosis under the DSM-IV maintain access to an ASD diagnosis. Contrary to assertions that ASD is over diagnosed, evidence suggests that the opposite is the case – namely, that racial and ethnic minorities, women and girls, adults and individuals from rural and low-income communities face challenges in accessing diagnosis, even where they clearly fit criteria under the DSM-IV. Furthermore, additional effort is needed to ensure that the criteria for ASD in the DSM-5 are culturally competent and accessible to under-represented groups. Addressing the needs of marginalized communities has been a consistent problem with the DSM-IV. 

 Individuals receive a diagnosis for a wide variety of reasons. Evidence from research and practice supports the idea that enhancing access to diagnosis can result in substantial improvements in quality of life and more competent forms of service-provision and mental health treatment. This is particularly true for individuals receiving diagnosis later in life, who may have managed to discover coping strategies and other adaptive mechanisms which serve to mask traits of ASD prior to a diagnosis. Frequently, individuals who are diagnosed in adolescence or adulthood report that receiving a diagnosis results in improvements in the provision of existing services and mental health treatment, a conceptual framework that helps explain past experiences, greater self-understanding and informal support as well as an awareness of additional, previously unknown service options.

 Some have criticized the idea of maintaining the existing, broad autism spectrum, stating that doing so takes limited resources away from those most in need. We contend that this is a misleading argument – no publicly funded resource is accessible to autistic adults and children solely on the basis of a diagnosis. Furthermore, while the fact that an individual has a diagnosis of autism spectrum disorder does not in and of itself provide access to any type of service-provision or funding, a diagnosis can be a useful contributing factor in assisting those who meet other functional eligibility criteria in accessing necessary supports, reasonable accommodations and legal protections. As such, we encourage the DSM-5 Neurodevelopmental Disorders Working Group to interpret the definition of autism spectrum disorder broadly, so as to ensure that all of those who can benefit from an ASD diagnosis have the ability to do so.

 The Autism Society and Autistic Self Advocacy Network encourage other organizations and groups to join with us in forming a national coalition aimed at working on issues related to definition of the autism spectrum within the DSM-5. Community engagement and representation within the DSM-5 process itself is a critical component of ensuring accurate, scientific and research-validated diagnostic criteria. Furthermore, our community must work both before and after the finalization of the DSM-5 to conduct effective outreach and training on how to appropriately identify and diagnose all those on the autism spectrum, regardless of age, background or status in other under-represented groups.

 Sincerely, 

 

Ari Ne’eman
President of Autistic Self Advocacy Network
aneeman@autisticadvocacy.org

Scott Badesch
President of  Autism Society

sbadesch@autism-society.org

 

 

Jan 20

Is It Time to Abandon the DSM?

Is It Time to Abandon the DSM?
Controversy Over Autism May Present an Opportunity

January 20, 2012

©2012 Michael Forbes Wilcox

“…disability is a natural part of the human experience…”

From The Developmental Disabilities Assistance and Bill of Rights Act of 2000 (originally passed in 1990, and commonly referred to as “The DD Act”)

The American Psychiatric Association Is No Longer Relevant

The American Psychiatric Association (APA) has been the focus of intense controversy in recent months, as it struggles to revise its Bible, the “DSM” – the Diagnostic and Statistical Manual of Mental Disorders.
There is an article in today’s New York Times which brings attention to the latest twist in this saga.
The opening paragraph of the article summarizes the stark future possibly faced by those of us in the autism community who are working for more inclusion:
“Proposed changes in the definition of autism would sharply reduce the skyrocketing rate at which the disorder is diagnosed and might make it harder for many people who would no longer meet the criteria to get health, educational and social services, a new analysis suggests.”
Whether the study cited in the article proves to be accurate or not, this whole controversy raises the question of whether the APA should be the arbiter of the diagnosis of autism.
In my view, the DSM has outlived its usefulness as a diagnostic tool for autism.
Yes, I understand that the practical difficulties of moving away from the DSM are not insignificant. It is cited in legislation as the authority on autism even in bills such as the Massachusetts ARICA law, which was put into place in 2010 to (supposedly) redefine autism as a medical condition.

Autism Is Not a Psychiatric Condition

As noted, we (the autism community) have gone to great lengths to have autism categorized, for insurance purposes, as a medical condition, not a “mental health” (or psychiatric) one. So, how does the APA have the power to decide what autism is? Do they define what diabetes is? I don’t think so.
We are in the trap of buying into the behavioral model. Autism is a neurological condition, not a behavioral one. Since there is no widely-accepted objective test that will identify someone as autistic, we are left with a behavioral, subjective diagnostic process. This is, I suppose, how the APA retains a toehold. And, of course, to uphold the tradition/myth that only psychiatrists are qualified to prescribe psychotropic medications.
Perhaps we are fighting the wrong fight. Why argue with the APA? Why not work in other areas to ensure that Asperger’s and related learning differences are recognized in the world at large as disabilities that need to be treated on a par with any other disability that creates a barrier to full inclusion or to gaining full potential?
Yes, I realize my suggestion raises a whole host of other questions and challenges. Who, then, defines what is autism/Asperger’s etc.? Who is qualified to diagnose? I have a non-clinical view (my chief qualification in this field being that I am autistic), and I’m sure there are many complications of which I’m not aware, but I have faith that, if properly worked out, things should not be all that much different from the way they are today.
It seems to me that by engaging in this pissing contest with the APA, we cede to them their authority over the autism community and grant them the right to define how the English language is to be used. If you accept their definition, autism is a “disorder” — I disagree.

I welcome feedback and comments.

On Beyond Zebra

We all know that language is important (and none was a greater illustrator of its power than Dr. Seuss!).
In a forthcoming essay, I will argue that “Autism is Just Autism” – and discuss (among other things) the following points:

This essay examines some of the language commonly used when referring to autism, and suggests some changes that might soften the negative aspects of those words and phrases. Among others, these concepts are discussed:

  • Autism is not a disorder. The DD Act states that “disability is a natural part of the human experience…” Beyond that, we need to consider the social model of disability.
  • Thinking of autism as a “constellation” might be a more apt description than as a “spectrum” – the latter word implies a ranking of people along only one dimension, and leads to the false ideas around the “severity” of autism.
  • Ironically, the application of “person first” language in the world of autism has led to sharp disagreements and hurt feelings, with people on each side believing they are being respectful and the others are not.

Dec 24

Lost That Lovin’ Feeling?

 

Another great cartoon from The New Yorker. It reminds me of people in the couples support groups I co-lead. This might describe some of the people whose partners are Aspergerian! The good news is that those partners are perhaps not as bird-brained as this cartoon character, and can come to realize the impact they are having on their partner when they get self-absorbed…

Nov 24

The illusion of multi-tasking

The following is a discussion that took place on Facebook, and I thought I’d reproduce (an edited version of) it here to preserve the record and also to allow my blog followers to add comments if they wish.

 

Charles: Can relate to this.

Linda: Lmao so can I

John: you can be both sir

Charles: That means I will have to multi-task, right?

Lucy: Gifted is weird. Weird doesn’t have to be negative.

MFW: Charles, no one can multi-task. It’s an illusion that neurotypical (NT) people have. The brain can only focus on one thing at a time. For autistics, however, our focus is so intense that we have difficulty (i.e. it is slow for us) transitioning from one task to another. Yet, because we get so all-absorbed in whatever we are doing, we suffer exhaustion after not too long, and must change tasks to relieve the pressure. NTs call this ADHD, I call it time-sharing. NTs do the same thing, only they do it so rapidly it *appears* that they are doing more than one thing at a time! It is, as I say, an illusion (one that autistics cannot replicate).

Disclaimer: yes, I am aware that I am over-generalizing, but what good is hyperbole if you can’t use it?!

MFW: Lucy and John, I agree, of course! When I received my diagnosis of Asperger’s Syndrome, I told a good friend (someone who knows me quite well), who has a background in SPED and knows a lot about autism. Her response was, “No, Michael, that’s not your problem!”

“Oh?” I asked (with full confidence that it was the correct diagnosis), “what is my problem?”

“You’re gifted!” she replied

“They are not mutually exclusive!” was my reaction.

So, yes, I’m proud of being weird. Always have been.

Charles: Then my brain must function perfectly with rapid intermittent impulses because I often do several things at the same time. Also I function well in chaos.

 Charles: Michael, You have me thinking about your statement. Well I disagree, because when I was a kid I played the drums. A drummer does six distinct different functions at the same time. Two feet playing to different peddles at different tempos, two hands playing different drums or cymbals at different speeds and movements, as well as reading music and listening to music all at the same time or it won’t work.

 MFW: Charles, I’m just repeating the science as I understand it. That’s why I called multitasking an illusion. It may be a very useful and convincing one, but the brain does only one thing at a time. If you are switching tasks rapidly (and we can be talking microseconds here, since electrical impulses are involved) it may very much feel like you are doing many things simultaneously, and for all practical purposes, you are.

I was just trying to explain why, for many autistics, the illusion is difficult to create. Everyone is different, of course, and some of us can do some things and not others. The are many autistic people who are quite talented musically, and can do what you describe. Think of JS Bach! Or Mozart! (Both of whom are thought to have been autistic.) I do not happen to be one of those with musical talent. I joke that the only thing I can play well is the CD player. When I was a kid, I tried to learn to play the violin, and I was able to play some pretty advanced stuff, and, according to my teacher, I had perfect pitch. I was very talented as long as I was playing alone, and at my own tempo. When my teacher tried to get me to play at a different tempo, or when I played with a group, I fell apart. Too much input!

For many autistics, this difficulty (called monotropism — here is a “stub” which is not too informative and incomplete, but gives the gist: http://en.wikipedia.org/wiki/Monotropism) results in such well-known behaviors as not looking someone in the eye when speaking to them. (http://jerobison.blogspot.com/) Stephen Shore has said that when asked to look someone in the eye while speaking to them, his response has been, “I can look you in the eye *or* I can speak to you. Which do you want?”

Lucy: I’m not sure that drum playing etc is in the category of multi-tasking, even though it integrates various cognitive and physical processes. Many (most?) tasks combine multiple skills and functions (reading, conversing, gymnastics, trying to make sense of GOP debates, etc etc). Those functions have to be compatible — effectively operate as one — for the task to be achievable. Maybe it’s in trying to combine two separate tasks — two different sets of skills and functions, fighting for the same mental and physical resources — that it all falls apart… even though, as Michael points out, there is a widespread neurotypical conceit that we can handle it. Btw, I find these discussions (in Michael’s threads) of the Aspergian/autistic experience very helpful in understanding my son.

 Charles: I think they need more research!