May 01

Steve Silberman @AutismConnectMA

Autism Connections was honored to have Steve Silberman keynote our 28th Annual Autism Conference on April 27.

Among many other services, Autism Connections houses the Department of Developmental Services (DDS) Autism Resource Center for the western four counties of Massachusetts.

I was privileged to introduce Steve to the Conference.

I prepared remarks for the 15 minutes I thought I would have, until the organizers pointed out to me that they needed to make a few housekeeping announcements, and I should count on half that amount of time. So I trimmed my comments, which undoubtedly made them better. Here are my remarks, approximately as I delivered them.

 

Autism in the Age of Neurodiversity

Introductory Remarks for April 27, 2018 Annual Conference

by Michael F. Wilcox

Welcome, Everyone!

A special welcome to those who are here for the first time. For those of you who don’t know me, my name is Michael Forbes Wilcox, and I am the President of the Board of Autism Connections. I am not the first openly autistic person to serve on our Board, and I certainly won’t be the last. We’d like to have more.

A word on language. I’m well aware that some people prefer person-first language, and use the phrase “people with autism” or even the more neutral euphemism, “on the spectrum.” I prefer identity-first language.

I am an autistic person. I will use that language here in my remarks because that is what I am comfortable with, but please know that our organization respects all labels that are chosen by the people who must wear them. Our overriding principle is that people get to choose their own labels.

I first figured out that I’m autistic 13 years ago, when I was 59 years old. For those of you who are not autistic, allow me to do the math. [laughter] Yes, that means I am now 72 years young.

As if to compensate for our slow neural development at an early age, we autistics seem to age more slowly as well. We remain active intellectually and physically longer than our unfortunate neurotypical counterparts [laughter]. Or, so I am told.

This organization, like most autism organizations, was started for the purpose of providing assistance to autistic children and their caregivers.

Our first speaker, Steve Silberman, will have much to say about this history, I suspect; or, at least, his book NeuroTribes does.

In the early days of autism identification, not only was autism, in this country at least, thought to be a childhood condition, but it was believed to be almost always accompanied by intellectual impairment.

We now know that these ideas give a much too restrictive view of the wide range of autism. The very word “spectrum” came into use, at least in part, to promote the idea that autism is not related to intellectual capacity, nor is it confined to any other subgroup of the population. Autism is a natural, and widespread, condition.

Let me repeat that: autism is a natural part of the human condition. It is not a deficiency. It is not a disorder. It is a difference. It is a profound difference, to be sure. And one that many of us are very proud and privileged to own.

Years ago, when I embraced my autism, I launched myself into an advocacy role. As you might imagine, one of my major interests was, and continues to be, the provision of adult services. I’ve served on many Boards and advisory committees.

As Autism Connections expands our reach and implements new services, especially for transition age and autistic adults, we need your help. Whatever your skill set, believe me, we can use your assistance. If you are interested in helping with our activities as a volunteer, please contact me, or Karen Serra, our wonderful Director. Or, speak with any member of our staff, and they can pass along your interest to Karen or me.

And now, let me turn from asking you for help to introducing you to a source of some wondrous information that will enhance your understanding of autism, and the needs of autistic people. I am referring, of course, to our first speaker, Steve Silberman.

I am proud to count Steve as a friend. He is probably one of the few people I know who has more friends than I do. And such variety! Talk about diversity…

Music, for example, is very important to Steve. I can tell from his Facebook feed that he has been spending a lot of time lately with David Crosby. He calls himself a fly on the wall, but he’s being modest. He has produced albums and he is not an entirely passive player in the game.

When I heard on my local radio station that David Crosby would be appearing at Tanglewood in June, I burst out laughing. Not because that is, in itself, very funny. But I was immediately reminded of a story that you [looking at Steve] told me. [I did not repeat the story; it was an amusing anecdote of Steve’s, about another Crosby appearance at Tanglewood many years ago.]

Two years ago, Steve gave the keynote address for World Autism Day at the United Nations. Ten years earlier, such an event might have been filled with the gnashing of teeth and the gushing of pity for us poor autistic folks who would never amount to anything. Instead, Steve gave an impassioned speech calling for the full inclusion of autistic people. I think that was one of the best talks you’ve ever given.

Later on that program, our friend Ari Ne’eman introduced the crowd to sensory-friendly applause, acknowledging our borrowing from the deaf community. [I demonstrated the sign for applause]

I saw, in response, hundreds of people waving their hands in the air, and it brought tears to my eyes, to think how much the world has changed, even in the few short years I’ve been involved.

So, in a few moments, when you welcome our speaker, instead of clapping, give it a try!

You [again, looking at Steve] may remember the conversation we had at NYU when you appeared before the journalism school. You were asked how you came to be not just a reporter, but an advocate for autistic people. We talked about how, when you are black, or gay, or Jewish, or autistic, or belong to some other group that has been marginalized; discriminated against, misunderstood, picked on and bullied, excluded, and told in ways both direct and indirect that you are not welcome, you can easily develop empathy for someone else who belongs to a similar group.

I asked you if you had observed, as I have in the hundreds of autistic people I have come to know; a high degree of social awareness and a very common desire for social justice. You just laughed and said, “I think it could be a diagnostic criterion!” Do you remember that?

I’m not gay and I’m not Jewish, and Steve is not autistic. Yet, we have a lot in common. Here I am, trying to make a difference, and here you are, doing the same.

It is with enormous pleasure that I introduce to you my good friend, Steve Silberman.

 

Apr 29

Blogging Hiatus

I’ve not been a regular blogger lately.

That’s about to change (I hope).

I have been doing lots of writing over the past few months, but haven’t shared it here. I’ve given lectures and talks for which I’ve prepared notes, and I have more in the works.

Most of what I’ve just described relates to autism, and I’ve also been doing some extensive research and a bit of writing about various hiking venues (and their histories) here in the Berkshires. I’ll be sharing parts of that as well.

And on the autism front, I’ve had extensive conversations (online and in person) about the latest revelations concerning Hans Asperger and his relationship to the Nazis who were in power during the time he was first writing and speaking about autism. I’ve not completed my research on this topic, but let me just say that I don’t agree with many of the interpretations that have been written.

So there’s all that and more. You might want to stock up on popcorn.

Feb 12

The Parenting Spectrum

A recent article in the Washington Post has garnered some much-needed attention to a long-standing problem for the autistic community.

A mother tells the story of a family outing in a park, which she thought had been going very well.

It had been a good day at the park. A miracle day, in fact, for our family. Our 5-year-old son, who is moderately autistic and prone to violent outbursts and self-injurious behavior, had sailed through the outing without a meltdown. So it was all the more shocking when the police approached us.

Someone had called the police, suspecting that the kid was perhaps being mistreated. Nothing could have been farther from the truth.

I award these parents 5 stars for the way they handled the situation, and for their obvious love and acceptance of their son. On the parenting spectrum, I would place them far along toward the “good” end. [On the other end of the parenting spectrum are those parents who do not accept their autistic children for who they are, but engage in disrespectful behaviors such as looking for a “cure” or for “recovery” or try to “blame” autism on some external factor instead of accepting its underlying genetics.]

This mother’s concern is summed up in her plea:

The police were called on us because my son was having a bad hair day. What does this say about our society?

We need less worry and more support. We need less judgment and more acceptance. We need less of what my friend Sara Zaske, the parenting writer, has called “the destructive police-calling culture” and more true help and awareness. I would even argue that while it’s fine and necessary to help autistics adapt to a world that they perceive as hostile, we should also be actively trying to make the world a less hostile and more forgiving place for people who act and look a little different, and for those who love and care for them.

I also give her kudos for identifying her son as “autistic” — not as someone who “has autism” in the old “person-first” paradigm that is, thankfully, rapidly fading.

The only demerits I would give to the article are really more commentary on society’s misunderstanding of autism, rather than on the parenting on display here, which strikes me as extraordinarily winsome.

  • In the first quote above, the mother describes her son as being “moderately autistic” — I disagree with the idea that autism (or any disability) can be described as having degrees. Many of us who are autistic work very hard to avoid being identified as being odd, because our culture tends to treat differences and diversity very harshly. Some of us are more successful than others at overcoming autism’s challenges. To the outside world, this may look like different degrees of autism, but in fact, our performance is influenced by a myriad of factors that have nothing to do with autism.
  • At one point in the article, the author says of her son that in addition to being autistic, “he also has sensory processing disorder” — an idea which doesn’t ring true to me. Having sensory issues is part and parcel of being autistic. Autism is not a disorder (it’s a difference), and its unusual sensory processing comes with the territory; it is not a thing of its own. Another “disorder” that is likely non-existent is the so-called “social communication disorder” which also strikes me as just being another manifestation of being autistic.
  • In the vocabulary department, I note the common misusage of the word “nonverbal” to indicate “non-speaking.” Many, if not most, people who cannot speak do in fact understand words.

These small complaints arise from my autistic need for perfection. I realize the world will never accommodate my desire, and I am sometimes even willing to admit to the possibility that I might be wrong about some things. All of this contributes to my inherent anxiety, another part of autism that I have integrated into my self-understanding. I have never met an autistic person who thinks that being autistic is easy.

On balance, the struggles that come with autism are far outweighed by its advantages. Being autistic is a privilege and a joy.

Feb 11

Equivalent Lands

A piece of local (New England) history. Did you know? I had never heard this term, although I was familiar with some of the boundary problems that had existed between Connecticut and Massachusetts.

In the 1970s, I lived in Southwick Mass, which has a block of land that juts into Connecticut, and disrupts the otherwise straight line that is the border between the two states. The story I remember is that all of Southwick was once the property of Lord Southwick, and he didn’t want it broken up between two states. Now I find that was all hogwash!

I also didn’t know that Springfield (where I lived for 10 years prior to moving to Southwick) used to be part of the Connecticut colony. My father’s ancestry traces back to early English settlers of Connecticut, including the first Governor of Connecticut Colony. His parents were direct descendants of two of the “Founders” of Hartford (where I also lived for a time), John Wilcox (or Willcocks) and John Bidwell.

It seems that things were quite complex over those years of imprecise surveying, compounded by conflicting claims of territory.

Dec 11

Hello OLLI Interview: Autism in the Age of Neurodiversity

Advance publicity for my OLLI course on autism is in full swing. Last week (on December 6), I attended an Open House in Pittsfield and gave a short pitch, and then (on December 7) I appeared on local public access TV in a half-hour interview, available here.

The interview was a lot of fun, giving me a chance to give some of my background, and to tell my own story of discovering autism. The interviewer was kind enough to let me ramble on, and we ended up not having time to discuss one of the questions she had for me, and one related issue that I had been prepared to explain.

All of this will be covered during my course this winter, as I explore (and try to explode) some of the myths about autism.

The first missing item was one I had described to Virginia, in advance of our interview, that December 7 was always an emotional day for me, because it marked the anniversary of the death of the uncle I never knew. I described to her the almost unbearable sadness I experience when I think of how devastated my mother (and her parents) must have been to lose her only sibling.

Virginia, with her background in psychology, was aware that this account flew in the face of the common misconception that autistic people do not experience intense emotions, especially empathy. She asked me if I’d be willing to describe my experience, but, alas, we ran out of time.

Hans Asperger, one of the pioneers in describing autism, was very well aware of the rich emotional life of autistic children he met in his clinic. In commenting on his seminal 1944 paper, Uta Frith observed, “From Asperger’s descriptions throughout it is clear that he believed autistic children to be capable of having strong feelings, and to be disturbed only in their ability to manifest such feelings appropriately.”

I was also prepared to talk about one of the other myths of autism, as another example of the items that will be covered in my OLLI course. There is a thing called central coherence, often characterized as the ability to “see the forest for the trees.” Based on many research studies, it was mistakenly thought that weak central coherence was a central feature of autism.

To illustrate what had been done, here is an example of one of the tests that could have been used. 

A diagram such as this would have been presented to the research subjects with the question, “What do you see?” (Sometimes the same effect is created with geometrical shapes, such as having small squares within a large triangle.)

In results that were reproduced by several researchers, autistic people responded much more often than non-autistic people by naming the small letter (or shape) within the larger one. The conclusion reached by these researchers was that autistic people have (relative) difficulty seeing the larger picture.

“Whoa!” said MIT researcher Nancy Kanwisher. She suggested that maybe we are asking the wrong question. Given instructions that the answer being sought was “what is the larger image?” she found that autistic people performed almost identically (and perhaps a little better) on these same tests.

Her conclusion? Autistic people find the details more interesting, and that’s what they will report in an unstructured environment. They actually have no difficulty at all seeing the big picture. Bang! There goes another myth.

We’ll examine many such shortcomings of autism research, and discover ways that the autistic experience is genuinely different. I’m looking forward to a lively discussion.

Dec 01

2017 AANE Annual Conference: My Workshop on Language and Mythology

Click Here for an Outline of My Presentation

I will be conducting a workshop, as part of the December 2 AANE Annual Conference at Bentley University.

The outline is really just a teaser. I cannot possibly do justice to all of the topics listed, in the time allotted.

I hope to generate discussion and to get a feel for which topics (and maybe many others) might merit further exploration via some blog posts.

Just to be clear: the last section within the “Pathology” heading is meant to mock the kind of research commonly done, not necessarily to pick on this particular study. By using the language illustrated here (“pathology” and “abnormality” and “risk” and “inefficiency”) the researchers have clearly drawn their conclusions before they even begin their study. Adherents of the neurodiversity paradigm would flatly reject such derogatory labels being applied to autism. Instead, autism should be viewed as a different way of being, not as a “disorder.” The role of science should be to explore and explain differences, not to pass judgment on the natural order of things.

Dec 01

AANE Workshop: The Language and Mythology of Autism

The Language and Mythology of

Autism

The words we use reveal our values,

and the language we use can shape our beliefs.

To be autistic is to be neurodivergent,

and to be neurodivergent is to enjoy a different way of life.

Identity

Pathology

Euphemisms

 

Empathy

Functioning

Special Interests

 

Michael Forbes Wilcox, MA, CFA

http://www.mfw.us/blog/


 

Language

 

Identity

 

  • Neurodiverse versus Neurodivergent

  • IFL (Identity-First Language) “I am autistic.”

  • PFL (Person-First Language) “I am a person with autism.”

  • I am on the spectrum.”

  • Who gets to choose?

  • Is there a way to be inclusive?

  • The use of person-first language in scholarly writing may accentuate stigma

http://onlinelibrary.wiley.com/doi/10.1111/jcpp.12706/full

from: https://eclecticautistic.wordpress.com/2017/08/22/identity-first/

 

Pathology

 

  • Autism Recovery

  • The Social Model of Disability

“Autism is a disability when it is seen as a deficiency.”

  • Speaking versus Verbal

  • Comorbidity

  • Emotional Age

    • Stimming

    • Parent Organizations (cf. IACC spat)

    http://nosmag.org/parents-and-autistic-adults-clash-at-autism-committee-meeting-iacc-interagency-autism-coordinating-committee/

    http://www.mfw.us/blog/2014/07/15/whose-table-is-this-anyway/

    Abnormalities shown to first appear in brain networks involved in sensory processing

    • The origins of autism remain mysterious. What areas of the brain are involved, and when do the first signs appear? New findings published in Biological Psychiatry bring us closer to understanding the pathology of autism, and the point at which it begins to take shape in the human brain. Such knowledge will allow earlier interventions in the future and better outcomes for autistic children.

    • Scientists used a type of magnetic resonance imaging (MRI), known as diffusion weighted imaging, to measure the brain connectivity in 260 infants at the ages of 6 and 12 months, who had either high or low risks of autism. The lengths and strengths of the connections between brain regions was used to estimate the network efficiency, a measure of how well each region is connected to other regions. A previous study with 24-month-old children found that network efficiency in autistic children was lower in regions of the brain involved in language and other behaviours related to autism. The goal of this new study was to establish how early these abnormalities occur.

    http://publications.mcgill.ca/reporter/2017/08/pinpointing-the-origins-of-autism/

 

Euphemisms

 

  • HFA versus Asperger Syndrome

  • On the Spectrum

  • Our Kiddos

  • This Population

Mythology

 

Empathy

 

“From Asperger’s descriptions throughout it is clear that he believed autistic children to be capable of having strong feelings, and to be disturbed only in their ability to manifest such feelings appropriately.”

Uta Frith, on his 1944 paper

 

Functioning

 

Asperger said that [autism] encompassed an astonishingly broad cross section of people, from the most gifted to the most disabled. There seem to be nearly as many varieties of Autismus as there were autistic people.”

Steve Silberman in NeuroTribes, page 98

  • 50% of autistic people also have intellectual impairment”

  • one-third of autistics also have epilepsy”

  • Alexithymia

    Developmental “Delay” (as opposed to difference – cf. Kanwisher study)

  • Mirror Neurons

  • Altruism

  • Telephobia

  • Prosopagnosia

  • Mutism

  •  

Special Interests

 

Bleuler [1911] defined “autistic thinking” as

self-centered rumination and retreat into fantasy.”

Asperger observed that in “everything these children follow their own impulses and interests, regardless of the outside world.”

Silberman op. Cit.

 

Transition

 

A transition period is a period between two transition periods.”

George Stigler

 

Identification

 

Autdar” – is there such a thing?

How do we know someone is autistic?

Why do we identify as autistic?

 

Hall of Fame

 

  • Who gave this wonderful description of how the autistic mind works?

I am slow to learn and slow to forget that which I have learned.

My mind is like a piece of steel; very hard to scratch anything on it and almost impossible after you get it there to rub it out.

Bonus: which autistic person shares the same birthday?

 

Nov 28

Autism in the Age of Neurodiversity: Course Announcement

I am pleased to announce that I will be presenting a series of six lectures on autism in this winter’s Berkshire OLLI program. NB: the venue has been changed from BCC to Simon’s Rock.

One of my objectives will be to dispel some of the myths and misunderstandings around autism.

Here is everything you need to know. Feel free to contact me with any questions.

Nov 27

Does Our National Accounting System Reflect Our Values?

A rhetorical question, I’m afraid.

We (I’m wearing my Economist’s Hat here) have long been aware of the hidden cost of externalities, those insidious, unmeasured penalties incurred by society in a profit-driven economy.

In our national accounts, for example, we measure the dollar value of energy produced (such as electricity or gasoline), but we do not record the cost to society of consuming these goods. When consumers purchase electricity, we record that as a positive contribution to Gross Domestic Product (GDP), without considering the negative impacts (such as pollution, or the other detrimental health effects on miners) of its production.

Ironically, some of the costs that are later explicitly borne by society, such as rebuilding after a storm made more vicious by global climate change, or caring for people who suffer from lung disease, are counted as positive contributions to our well-being (at least, as measured by GDP).

For me, some recent publicity about the costs associated with recovering from this year’s hurricane season have brought home the point that our accounting system is not just loopy — it may actually be helping foster bad policy decisions.

There is something very wrong with an accounting system that considers storm damage a good thing. Yet, in effect, that’s what our national accounts do. This article in Weather Underground points out that actual costs may be higher than those mentioned here. Yet, even this (possibly lowball) estimate amounts to about ½% of GDP. And this was only one of the seriously damaging storms we have seen this year.

When (and if) the damage done by these storms is repaired, that economic activity will be recorded as a positive addition to GDP. No deduction will be made for the resources and assets that have been lost. So, in this example, $102 billion will be added to our GDP, but we will actually be no better off. Except, of course, that income will have been produced for those involved in the recovery effort, and there will be ripple effects as that income is spent throughout the economy. Still, if these storms had never happened, instead of spending money on repairs, we presumably could have used these same funds to build new schools or hospitals or to do any other number of useful public works.

Yet, the damage goes unrecorded. Note this blithe dismissal in the latest Treasury report on the economy:

As people in Houston repair their flood-damaged houses and replace their automobiles that were destroyed, all of this will be recorded as positive economic activity. Yet these people will be no better off than before the storm in any substantive way, and how do you account for the loss of family treasures such as photographs and documents?

In real ways, we, as a society, are now paying the piper for bad policies and decisions made over the past many years. Yet, no one is calling us to account for this in dollars and cents. Surely this is an oversight that can be corrected. But where is the political will to do so? Another rhetorical question, to be sure..

 

Nov 16

Carbon Sequestration: Our Only Hope?

I am a big fan of Elizabeth Kolbert’s writing. I’ve read just about everything she’s written in the past few years, and I also attended a talk she gave at a local college (she lives not too far from me). The most recent (November 20, 2017) issue of The New Yorker published a piece by her on the subject of stopping (and even reversing) the practice of adding carbon dioxide to our atmosphere.The article makes several important points, and I highly recommend it if you’d like to understand the necessity of this process, as well as the daunting challenges we face in making it a reality.

The United Nations has said,

In order to achieve the goals of the Paris Agreement, carbon dioxide removal is likely a necessary step.

Yet, there is no easy path forward. The technology is in its infancy, and it’s not clear how well it will scale up.

There are many moving parts, here, of course: technological, economic, and political.

The focus to date has been on reducing carbon dioxide emissions. This has led to an emphasis on renewable fuels, but the implementation in some areas leaves a lot to be desired. The production of ethanol, for example, creates large amounts of CO2 which is released into the atmosphere. Similarly, the burning of biofuels undoes the natural carbon sequestration that occurs when plants grow.

Part of the problem here is that there is no economic incentive to capture COemissions. Kolbert argues that we have made a mistake by treating carbon dioxide as an evil presence, rather than a waste product that, like sewage and trash, needs to be dealt with. She points out that it is unlikely the world will reduce, much less eliminate, carbon dioxide emissions anytime soon. The only path the stopping things from getting worse, in terms of the concentration of the gas in the atmosphere, is to capture it at its source of production and store it away safely in some form. Beyond that, it is necessary to remove some of the overabundant supply already in our air, which is creating climate change, and will continue to do so, almost no matter what we do now.

This is not a very upbeat article, because it starkly points out how bad things are at present, but at least it does offer a possible path forward, and that’s better than having no hope at all.

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