Oct 25

Prepared Remarks for AS Connections 2014

Here is a preliminary copy of the remarks I plan to deliver today to the AANE Conference in Boston.

After making post-conference adjustments, I will post the entire text and illustractions here, along with links to resources concerning the various topics I mention.

 

Jul 15

Meet Don Berwick, Sunday, July 20 in Great Barrington

Don Berwick is a Democratic candidate for Governor of Massachusetts. All are welcome, whether you are a supporter or not yet a supporter. We hope that people will be moved to make a contribution to the Berwick campaign, but that is not a requirement.

Light refreshments will be served. Contributions of refreshments are welcome. If you would like to bring some food or drink items, please let me know so I can inform our hosts of what to expect. I would also like to have a few volunteers to help direct people to parking and to help clean up after the event.

Spread the word! Share this with your email network, and print out copies of this flyer to post and pass out.

Many thanks!

#ALLMeansALL

 


You Are Invited to Meet Don Berwick
Sunday, July 20 at 5 o’clock

At the home of Leslye Heilig and Lou Davis
32 Benton Avenue, Great Barrington

RSVP at http://www.berwickforgovernor.com/event_GB

Don Berwick will greet people at this informal gathering, where you can come to show your support, or get to know more about Don’s candidacy.

Dr. Berwick’s life has been one of service, including a stint as head of the Center for Medicaid and Medicare Services (CMS).

Top priorities in a Berwick Administration would include:

  • Job creation and economic development: key issues facing our country and our Commonwealth
  • Education: the cornerstone of a successful Commonwealth
  • Healthcare: For 30 years, Don has worked to improve care for all. Don knows what good, patient-centered care looks like, and understands the need for a better payment system. He is the only candidate in this race to advocate for Medicare for All (single-payer).
  • Environment and Energy: Don envisions a carbon-neutral world, and has come out strongly against the Kinder-Morgan (TNG) pipeline.
  • Improving the lives of people with disabilities, the LGBT community, and other groups that have been marginalized in the past
  • Ending homelessness
  • Reforming our criminal justice system
  • Casinos: Don is the only candidate to support repeal of the casino law.

Prepared by
Berkshire People Supporting Don Berwick for Governor
Outreach Committee in formation
Michael Forbes Wilcox mfw {at} mfw(.)us

For information on the Berwick campaign and to sign up: http://www.berwickforgovernor.com/

Jul 15

Whose Table Is This, Anyway?

My good friend John Robison has written an important and articulate piece on autism advocacy.

He says

… it’s time to recognize the primacy of autistic people in the formulation of policy relating to research, education, treatment, and services for our community and our people.   We are able to express our own wishes and opinions, and we are doing so more firmly every day.  We no longer need parents or professional to speak on our behalf as a community.

To many of us who, like me, have been fighting for the right of autistic people to control their own destiny, this seems obvious. In our struggles to gain recognition for the right of self-determination, we have adopted the motto of the wider disability-rights movement,

Nothing About Us Without Us!

We autistics share many of the same challenges and frustrations that have been known to people with other disabilities over the years. In fact, we share much with all groups of people who have had to fight for the human rights they deserve. In his essay, John mentions Jews and Native Americans; two groups who are clearly candidates for this category, and there are many others. This country has a history of mistreating recent immigrants, especially those who were brought here involuntarily from Africa and other places.

Our society has made great progress on this front in recent years, but we have a long way to go. We no longer routinely institutionalize autistic people (although there still are some who are mistreated in this way). People like John and me sit on Boards, write books and blog posts, and speak to large audiences about our experiences and our thoughts.

Still, as I make the rounds, I’m continually astounded at how insensitive many people are to the need to include autistic people in conversations about autism. I often sit in a room full of neurotypical people who are talking about autism in ways that are demeaning and insulting, as if I were not even in the room.

After I figured out that I’m autistic (about eight years ago), I became very interested in learning more, and began reading about research done on the subject. Along the way, I have befriended many academic researchers and have had fascinating and enlightening conversations with them. Yet I remain astounded that there is not more “community involvement” (as it’s called) in autism research.

Autistic people are typically not involved in research design (let alone in deciding which questions are important to investigate), nor in interpreting results. The vast majority of autism research has been focused on children. Of course it’s important to understand the early-life experience of autistic people, but we do grow up. Why is there so little interest in finding our what happens to us later in life?

I’ve only scratched the surface here, of course. John’s essay covers more points. Some people have moved on beyond “autism awareness” and understand the need for acceptance. Yet John and I and many many other autism advocates are calling for more than acceptance. While fully recognizing and respecting the needs of family, professionals, and the wider autism community, we autistics want and deserve self-determination.

Jul 09

Massachusetts takes a huge step forward in the realm of disability rights

Yesterday, the Massachusetts General Court took a huge step forward in the realm of disability rights. The Senate approved S2245, Relative to assisting individuals with autism and other intellectual or developmental disabilities.

The bill isn’t perfect, but it is an enormous achievement on the part of the advocacy community. I like to say that advocacy is about asking for the moon and the stars, and if all you get is the moon, well, that isn’t so bad, is it?

Everyone who had a part in this accomplishment can be proud, and we can all congratulate each other.

The highlights of this bill (yet to be reconciled with the House version and signed by the Governor) include

  • makes the Special Commission Relative to Autism a permanent oversight body
  • creates special savings and expense accounts to receive tax benefits for expenditures that benefit an individual with a disability (of any kind)
  • expands the mission of DDS to include adults with developmental disabilities
  • encourages cooperation between DDS and DMH to provide mental health services to those with developmental disabilities
  • creates an endorsement in autism to certify teachers who are qualified to assist autistic students
  • extends insurance coverage for autism services to MassHealth (Medicaid)
  • requires the Autism Commission to report on employment and housing opportunities for autistic people in the Commonwealth

The annual cost of all of this is expected to be in the range of $30-$60 million, which will ultimately be offset by long-term savings as people are able to live more independently.

As I think back to the many struggles along the way, I give thanks to my own stubbornness and determination, and to the same qualities in many of my allies. We refused to take “no” for an answer at many crucial points, and we were never discouraged by those who told us we were only dreaming.

I had to argue, for example, with the staff of the Disability Law Center to get their assistance in writing some of this legislation. I was told it had very little chance of passing, so was not a good use of their time. I convinced them otherwise. Once the bill was filed and we started shopping it around, we were told by any number of lawmakers that major pieces of legislation like this do not get passed when they are first brought up. We even faced some early resistance within the Administration from folks who thought it was “too much too soon” but who did come around and ended up giving our proposals enthusiastic support.

So, there is much more to be done, but this is *huge*!

Michael Wilcox
AANE Advocacy Committee
Special Commission Relative to Autism

Jun 24

Disability Forum at Perkins School on Thursday June 26

Please join us for a
Gubernatorial Candidates Forum on Disability Issues

All seven candidates for Governor of Massachusetts will appear at this forum, and each will have half an hour to make their case and answer questions.

Don Berwick will be speaking second, at 1:30. Here is a flyer we will pass out at the event, enumerating the candidate’s stance on many disability issues.

If you’d like to help pass out flyers and sign people up for the campaign, please contact me.

For more information on the forum, including livestreaming, see this link.

Jun 15

Where Have All the Flowers Gone?

On this Fathers Day, I think back on my own father. Dad to me, Gray to his family, The Gray Fox to many. He would be 98 years old today if he had lived beyond his 81st birthday. I still miss him.

He was a lifelong Socialist and Pacifist, and (I now know) an Aspergerian. I have all of that DNA.

I feel that I have found a new father figure in Don Berwick, even though we are the same age. I grew up in the 1950s and 1960s, a time of prosperity and social awareness. Flower Power, feminism, and the Civil Rights movement. I was active in the anti-Vietnam War movement and I was a Conscientious Objector (and have the draft card to prove it).

Somehow, all of that went away. Many candidates have won my heart over the past few years because they have offered a vision that reflects the hopes I had for this world so many years ago. Nine years ago Deval Patrick came upon the scene and won my allegiance. But there have been others. Bob Reich. Howard Dean. Many more local candidates (and office-holders).

Yesterday, Don Berwick delivered a thrilling Convention Speech. I stood only 20 yards away from the podium and watched the sincerity in his face. There were times when I couldn’t applaud because I was overcome with emotion. I have heard the story of Isiah more than once before, but that didn’t stop the tears.

“He had two diseases,” Berwick said. “One was leukemia, which we cured. The other, he died from. Its name is injustice, it is inequality, it is poverty and, yes, it is racism.”

Don’s agenda to end these things is enough to enlist me in his campaign. But there is much more. I will be working hard for Don between now and November.

Mar 10

Why Autism “Functioning” Labels Are Misleading

Unfortunately, there is a great deal of confusion, and therefore misunderstanding, around what is meant by “high-functioning” and “low-functioning” autism.

The commonsense use of the word “functioning” has to do with, well, functioning. Most people would probably associate “functioning” with the usual meaning of “to work or operate, to carry on a function.”

But in the academic/scientific autism world, there is only a loose connection between the vernacular sense of the word and the label.

And my impression is that the clinical world is somewhere between these two, adding yet more confusion. A few years ago, for example, there was a raging debate about whether there is a difference between “high-functioning autism” and “Asperger syndrome.” The only pragmatic difference I could detect in who got which label was whether there was a delay in the acquisition of spoken language (“high-functioning”) or no delay (“Asperger’s”).

In the psychology community, the phrase used to describe the commonsense meaning of “functioning” is “adaptive behavior.” There is a related term, “functional behavior,” but that seems to be more about understanding the purpose (or function) of maladaptive behaviors.

Adaptive behavior reflects an individual’s social and practical competence of daily skills to meet the demands of everyday living. Behaviors change throughout development, across life settings and cultures, and through social constructs and expectations of others. It is important to assess adaptive behavior in addition to IQ in order to determine how well an individual functions in daily life.

Part of the problem here is that autism and true adaptive behavior skills have very little to do with each other. Celine Saulnier of Emory University spoke at a conference I attended a couple of years ago and emphatically stated that “functioning means IQ, and that’s all it means!” when describing autism.

She pointed out that not many years ago, it was thought that autism and intellectual impairment where highly correlated, with perhaps 70% to 80% of autistic people being cognitively impaired (generally defined as having an IQ not above 70). Today, the common wisdom seems to be the other way around, but Dr. Saulnier’s work (citations at her PubMed page) and that of others has shown that there is effectively no correlation between IQ and measures of autism such as the ADOS scale.

The mention of this diagnostic scale risks opening another can of worms, that of “severity” in autism. That is best left for another post, so let me just mention in passing that my interpretation of the ADOS (and other such scales) is that they measure how easy or difficult it is to tell from behavioral observation whether someone is autistic. A person who exhibits more obvious autistic behaviors is not necessarily “more” autistic than someone who has fewer outward signs.

There is another concept relating to the definition of adaptive behavior given earlier, and many commercial products exist that quantify this functional adaptive behavior. The best-known of these is perhaps the Vineland Scale, but there are several others that are in use. Dr. Saulnier observed that there is also no correlation between ADOS scores and Vineland scores, meaning that the “degree” of autism that is observed in a person says nothing about that person’s ability to function in life.

What, then, does it mean to label someone as a “low-functioning” autistic? Simply put, it is an autistic person who is cognitively impaired. This, as mentioned, is generally defined as having an IQ of no more than 70. There is more than one IQ scale, and different ways of standardizing test scores, but overlooking that wrinkle, the reason 70 was chosen is that it is two standard deviations below the mean IQ of 100. In keeping with the findings of Professor Saulnier and others, suggesting that the prevalence of cognitive impairment is the same in the autistic population as it is in the general population, or 2.28%. It follows that nearly 98% of autistic people are “high-functioning.”

As an aside, the federal statute known as the DD Act contains a definition of developmental disability (both cognitive impairment and autism are considered to be developmental disabilities). There is no IQ test in that definition; it is all about a disability that

results in substantial functional limitations in 3 or more … areas of major life activity

Given the significant limitations that IQ tests have in predicting success in such “areas of major life activity” I asked around to see if the general understanding of “low-functioning autism” really did include that arbitrary cutoff. Yes, I was told over and over again from researchers I know and respect. Even if not stated, it was understood that 70 was the cutoff, although some studies explicitly used other breakpoints, such as 80.

One of my contacts, at Harvard, gave me a link to a Simons Foundation article that addressed this problem directly.

Most studies define high-functioning children as those with an IQ above 70 or 80, but this is problematic for a number of reasons, say some scientists.

Although this article has a different take on what percentage of autistic people are cognitively impaired, it does confirm what my informal contacts had been telling me.

In addition, it points out many problems with associating IQ-type intelligence with the ability to cope with real-life challenges.

“Crudely taking IQ as a metric to divide up individuals can be misleading, because high-functioning sounds like you are doing really well, when in fact you’re not,” says cognitive psychologist Tony Charman, [former] professor of autism education at the University of London.

and

A person who scores 125 on an IQ test — and thus considered high-functioning — may in fact be considerably impaired in daily activities.

and, confirming the point made earlier

A population study … looked at the association between autism traits and intelligence [which] were both stable over time, but there was only a modest association between the two, suggesting that autism traits are independent of intellectual functioning.

From the blog of an autistic researcher comes this assessment:

What does level of functioning mean in autism research?

In autism research, autistics’ level of functioning is most often judged according to scores on specific tests of IQ (e.g., Wechsler) or developmental level (Mullen, Bayley, sometimes the Vineland) at a specific time.

The reported threshold dividing “high” from “low” functioning ranges from 50 to 90–at least in papers I’ve read so far; the actual range might be even greater. Those are IQ or IQ-type scores with a mean of 100 and a standard deviation of 15. So the threshold, the line dividing “high” from “low” functioning in autism research, is almost three SDs wide. Fall into that impressive span, and you may be high or you may be low functioning, depending on who you ask.

If 90 is the threshold, then about 25% of the entire population (autistic, nonautistic, everyone) is low-functioning. If the more common threshold of 85 is chosen, then about 16% of everyone is low-functioning.

70 is the threshold often considered to be standard even if in reality, if you read the literature, the threshold varies dramatically. But there are different tests and within commonly-used tests there are different ways to set a threshold, even when the threshold is numerically set at 70.

Using the cutoff of 80 suggested in the Simons article, by the way, would mean that about 9% of autistic people are “low-functioning.”

My take on all of this is that the autism “functioning” labels so freely bandied about are misleading, inconsistent, and not really all that useful. I think we would be wise to simply drop the concept and stop using this terminology.

Mar 09

Cart Before the Horse Research: Multisensory Integration in Autism

A short article appeared on the ScienceDaily website a few weeks back, reporting on a piece of research published in The Journal of Neuroscience, January 15, 2014. The title of the research study was not given, but a link brings one to “Multisensory Temporal Integration in Autism Spectrum Disorders.”

The brief summary of the research is problematic for me from beginning to end, because it is an (altogether too common) example of research that starts with a false premise and then proceeds to offer advice to “treat” a problem that may not exist in the first place.

The major false premise, common to much autism research, is that autism is a “disorder” rather than a difference. When a researcher starts from that premise, they will be looking for “causes” of the “defect” rather than for an understanding of the source, function, and consequences of the difference.

In the study, Vanderbilt researchers compared 32 typically developing children ages 6-18 years old with 32 high-functioning children with autism, matching the groups in virtually every possible way including IQ.

This highlights a potentially major problem in research about autistic children (and very little has been done using adults, so research on children accounts for the preponderance of “findings” about autism). Autism is generally acknowledged to be a developmental difference, with some skills developing more rapidly and some more slowly compared with neurotypical (NT) children. So, age-matching is going to distort the results. There might be a very marked difference in ability in childhood, but that difference might disappear by the time people reach adulthood. This needs to be accounted for, in my opinion, but it seldom (if ever) is, in the research I have read.

“Children with autism have difficulty processing simultaneous input from audio and visual channels. That is, they have trouble integrating simultaneous information from their eyes and their ears,” said co-author Stephen Camarata, Ph.D., professor of Hearing and Speech Sciences. “It is like they are watching a foreign movie that was badly dubbed, the auditory and visual signals do not match in their brains.”

Okay, so we “have difficulty” and “the auditory and visual signals do not match in [our] brains” — that does not mean we can’t integrate the two, it’s just slower. This is consistent with the Intense World Theory of Autism.

“One of the classic pictures of children with autism is they have their hands over their ears,” Wallace said. “We believe that one reason for this may be that they are trying to compensate for their changes in sensory function by simply looking at one sense at a time. This may be a strategy to minimize the confusion between the senses.”

Hmmh — “We believe…” and “This may be…” — I wonder if it ever occurred to him to ask any autistic people to comment on that. This is a common arrogance, that NT scientists somehow mysteriously know more about what it’s like to be autistic than do autistic people. Bizarre.

Wallace noted that the recently-released Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, (DSM-5), which serves as a universal authority for psychiatric diagnosis, now acknowledges sensory processing as a core deficit in autism.

Perhaps needless to say, I don’t believe that autism belongs in the DSM, any more than homosexuality did. It’s a difference, not a “psychiatric diagnosis.” And I think Wallace has distorted the role of sensory processing in autism. It’s not a “deficit” but one of the differences that presents many challenges in a world that was designed by and for NTs.

“There is a huge amount of effort and energy going into the treatment of children with autism, virtually none of it is based on a strong empirical foundation tied to sensory function,” Wallace said. “If we can fix this deficit in early sensory function then maybe we can see benefits in language and communication and social interactions.”

Given all the problems in this write-up, I can’t imagine that this research has any value at all. One can’t “fix” a “deficit” that doesn’t exist, and autism does not need “treatment.” It’s very discouraging to think of all the effort that goes into demeaning autistic people instead of trying to help them deal with an unfriendly world.

A couple of caveats:

  1. My comments here are based only on the description linked to here, which in turn seems to have been taken from the press release put out by Vanderbilt University Medical Center. I did not read the original article, which is copyrighted and behind a pay wall, and there is no contact information given for the authors. So much for the free and open flow of scientific ideas and information.
  2. I do not have any training in the field of neuroscience or any related area. My background is in financial economics, and my interest is a personal one. That said, I have learned much and formed many opinions over the past few years.

Mar 03

What is it like to be Autistic?

In an earlier post, I wrote a few comments about a definition of autism that I found appealing.

The difficulty with coming up with any definition of autism is that it’s really hard to capture the essence of what it’s like to be autistic. Even the best definitions leave me hankering for more. Give me more details. Give me examples.

As I have said on countless occasions, I have always known that I am different. Yet, I learned only fairly recently, when I was in my late 50s, that my difference has a name.

Autism is clearly a complex way of being in the world. It is not a disorder, it is not a defective way of being, it is just a difference.

Many gay people claim to have a sense they call gaydar (short for “gay radar”) which enables them to spot fellow gay people. Autistic people seem to have the same ability. Some call is autdar, by analogy. When we encounter one another, something just clicks. I am never so relaxed as when I am in a roomful of autistic people.

How is it that I can know that someone is autistic? Yet I do. Often, it is people I meet who tell me they are autistic or Aspergerian, and I say, “Of course you are!” Yet, it can also be people I meet casually, or people I think about who I have known in the past, or people I read about. How can I know? Yet I do.

In talks that I give, I often use cartoons. My favorite source is The New Yorker, but there are many other places where autistic humor appears. It isn’t labeled as such, of course, and probably not all cartoonists are autistic, but maybe many of them draw their inspiration from autistic people. In any case, when I present my favorite cartoons, they draw many laughs of recognition from audiences who are part of the autism community.

Here’s one.

Years ago, I lived with a woman named Joan. We have long since gone our separate ways, and although we’ve each had more recent romances, we remain good friends. She was with me in my pre-autism-awareness days, and we would often sit in the living room and enjoy a fire while we read our own books or magazines. On many occasions, I would not be in the mood to socialize, so I would take my arm and draw a line down the middle of the couch, telling her not to cross that line. It was my way of saying I didn’t want to be touched.

We parted before I became aware of my autism, but we talked about my discovery from time to time. At one point, she had an “aha” moment and looked at me, “When you did that thing about drawing a line on the couch you meant it, didn’t you? And at the time I thought you were joking!” No, it was no joke. I can be affectionate, but I can also have a need for distance. Does that define autism? Of course not. Yet, is there a single autistic person who could not relate to that? I doubt it.

Mar 03

Nick Walker’s Definition of Autism

Nick Walker says that

What is needed is some good basic introductory “What Is Autism” text that is:
1.) consistent with current evidence;
2.) not based in the pathology paradigm;
3.) concise, simple, and accessible; 
4.) formal enough for professional and academic use.

Since I couldn’t find such a piece of text elsewhere, I wrote one.

I’m glad to see this, because it’s something that I (and many other autistics) have struggled with; how to get away from the misconception that autism is a “defect” or a “disorder” and move to a more accepting paradigm. Autism is definitely a disability, and as enshrined in federal law (IDEA and the DD Act),

Disability is a natural part of the human experience and in no way diminishes the right of individuals to participate in or contribute to society.

I’ve known about my own autism for less than 10 years, and in that time, I’ve pondered what it means to be autistic. I know or meet people, or even read about some, who I know to be autistic, but how do I know that? What is it that defines our common experience? It’s really difficult to pin down. Autism is certainly not defined by the silly words in the DSM. That only describes how autism looks to an outside observer. It doesn’t describe the autistic experience.

Autistic people are speaking out now in ever larger numbers about what it is like to be autistic. The neurodiversity movement is picking up steam, and I believe will eventually expand to include many labels now seen as “disorders.” So here is a step along that path, and a wonderful contribution from a fellow autistic.

Here is Nick’s definition:

WHAT IS AUTISM?

Autism is a genetically-based human neurological variant. The complex set of interrelated characteristics that distinguish autistic neurology from non-autistic neurology is not yet fully understood, but current evidence indicates that the central distinction is that autistic brains are characterized by particularly high levels of synaptic connectivity and responsiveness. This tends to make the autistic individual’s subjective experience more intense and chaotic than that of non-autistic individuals: on both the sensorimotor and cognitive levels, the autistic mind tends to register more information, and the impact of each bit of information tends to be both stronger and less predictable.

Autism is a developmental phenomenon, meaning that it begins in utero and has a pervasive influence on development, on multiple levels, throughout the lifespan. Autism produces distinctive, atypical ways of thinking, moving, interaction, and sensory and cognitive processing. One analogy that has often been made is that autistic individuals have a different neurological “operating system” than non-autistic individuals.

According to current estimates, somewhere between one percent and two percent of the world’s population is autistic. While the number of individuals diagnosed as autistic has increased continually over the past few decades, evidence suggests that this increase in diagnosis is the result of increased public and professional awareness, rather than an actual increase in the prevalence of autism.

Despite underlying neurological commonalities, autistic individuals are vastly different from one another. Some autistic individuals exhibit exceptional cognitive talents. However, in the context of a society designed around the sensory, cognitive, developmental, and social needs of non-autistic individuals, autistic individuals are almost always disabled to some degree – sometimes quite obviously, and sometimes more subtly.

The realm of social interaction is one context in which autistic individuals tend to consistently be disabled. An autistic child’s sensory experience of the world is more intense and chaotic than that of a non-autistic child, and the ongoing task of navigating and integrating that experience thus occupies more of the autistic child’s attention and energy. This means the autistic child has less attention and energy available to focus on the subtleties of social interaction. Difficulty meeting the social expectations of non-autistics often results in social rejection, which further compounds social difficulties and impedes social development. For this reason, autism has been frequently misconstrued as being essentially a set of “social and communication deficits,” by those who are unaware that the social challenges faced by autistic individuals are just by-products of the intense and chaotic nature of autistic sensory and cognitive experience.

Autism is still widely regarded as a “disorder,” but this view has been challenged in recent years by proponents of the neurodiversity model, which holds that autism and other neurocognitive variants are simply part of the natural spectrum of human biodiversity, like variations in ethnicity or sexual orientation (which have also been pathologized in the past). Ultimately, to describe autism as a disorder represents a value judgment rather than a scientific fact.

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