Oct 25

Growing Old Disgracefully: AS Connections 2014

Here is a blog-friendly version of remarks I prepared for delivery to the AANE Conference in Boston.

I have tried to reflect some of the (less stilted, I hope) actual delivery, but not including some of the shoutouts I did to individual people who were in attendance.

I have also added links to resources concerning some of the topics I referenced. For the most part, I have bolded the places where I have provided links to articles or blog posts that are relevant to the topic I mention. I did not provide a full list of resources at the end, so you’ll have to poke around if you want to see some of my source material. This was, after all, a talk that was meant to share my experiences, and not an academic presentation. Still, I’ve tried to provide further reading for people who might be interested in particular topics that I touch upon along the way.

There was a lively Q+A session after I finished speaking, with many people providing feedback, sharing their own experiences, or asking questions. Many of those participating were, like me, autistic/Aspergerian. Questions and comments ranged from education to medication and many other topics. I was pleased that the general tenor of the conversation made me realize I had stuck a chord with many of those in attendance. We ran out of time before we ran out of conversation.

I welcome further feedback or questions via email or comments on this blog.

 

Michael Forbes Wilcox

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mfw {at} mfw(.)us

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

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Growing Old Disgracefully

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;

Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,

And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.

All my life I have traveled a different road. Sometimes, that was my choice; it was my preference, it was my comfort and my joy. But other times, it was not a choice at all. I was born different, and I had to travel as best I could, through a world that expected me to be somewhere else, to go the way that others did. But I did not know how.

Many of you know me, and have heard me talk before. I have shared how I learned, fairly late in life, that I am autistic. Nearly ten years ago, I embraced the Asperger’s label, somewhat reluctantly at first, and then with great enthusiasm. In the intervening years, I have learned much about autism and Asperger’s, and I am proud of both labels, which I use pretty much interchangeably.

I will talk to you today about what it has been like for me to grow old differently. Growing old is a wonderful thing. As they say, it sure beats the alternative.

I’d like to start with a funny story or two. At least, funny to me. Many years ago, before I knew anything about autism, I had a romantic partner. Not my first, not my latest. We lived together in the house where I still live. We parted company before I came to know that I’m autistic. But she knew that I was odd. That was part of my charm, I’m sure. In the years since then, we have remained friends, and we have laughed a lot about some of the things that transpired when we were together. We have talked about what it now means to me to be Aspergerian, and she has come to realize that during her life, she has tended to be attracted to Asperger’s men. We do have endearing qualities, you know.

So, a couple of stories that involve Joan.

You might think that the title of my talk was inspired by some meme I saw on the internet, like this one. It wasn’t, but I endorse the sentiment!

Just age disgracefully meme

No, it was something more personal.

In the years we were together, Joan and I went on some interesting vacations, and I guess she noticed my penchant for acquiring souvenir t-shirts. So, when she started going on vacations without me, she began to honor that tradition by always bringing me back a t-shirt from her various trips.

Except that they weren’t necessarily souvenirs of any particular place, but more likely oddball commentaries or things that made her think of me. Another of the things that she and I can now joke about is that she used to call me a grumpy old man, even though I am younger than she. And the truth is, I probably was; it’s one of the things about me that has changed, I think, because of my understanding of my autism and my understanding that most of the people in the world are not mean or crazy; they just used to seem so to me because I didn’t understand how very different I am.

Here is a t-shirt on the grumpy theme that she brought me from Sun Valley:

Grumpy's

And, it may very well be that she recognized and understood long before I did that my grouchiness and my aloofness, among my other endearing qualities, perhaps signified that I was a very different kind of person.

Not-an-attitude

You get the idea; there were many others. But one of my favorites was the one she brought back from a visit to her friend Lisa in Key West. It’s a t-shirt that, according to the front of the shirt, is from the Schooner Wharf Bar at the Key West Seaport. On the back, it says

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I’ll give you another example of the things we now laugh about, because I think it helps illustrate something that I want to talk more about later; sensory issues in autism.

On cold winter nights, we would often sit on the couch that faced the fireplace and read our own books and magazines as the fire blazed. On some occasions, I felt a need to withdraw into my own personal space, so I would take my hand and draw an imaginary line in the middle of the couch. “Don’t cross this line!” I would warn her. Years later, after we discussed my times of not wanting to be touched, she told me, “I thought you were kidding, but you weren’t, were you?!” No, I wasn’t.

Great Wall 100517_cartoon_074_a14961_p465

Before I came to understand that my autism explains many, if not most, of my sensory issues, I thought that I was defective in some way, because who would not want to be touched or to be hugged, who could possibly be bothered by currents of fresh air, who would cringe if someone chewed their ice, or spoke with food in their mouth, or ripped up a piece of paper, or if a clerk would fold a receipt before handing it to me? What was wrong with me that all of these things made me want to be somewhere else? And why did I have extreme, or even contrary reactions to some medications?

Now I understand, and that understanding has helped me to accept myself for who I am. I now know that I am not, in fact, defective, but that these reactions are a natural part of me and many people like me. Meeting a lot of other autistic people has helped immensely. I’ve learned that, although I may be unusual, I’m not so much of an oddball as I once thought I was.

Over the course of the past few years, I have met hundreds of autistic people, most of them in person, but also many of them online. The online world has a very different set of social rules, and it also allows for timeshifting, meaning that interactions don’t have to take place on any particular schedule, but are at the convenience of the participants. All of this can make online interactions much more comfortable for autistic people – and for others, too, I’m sure.

Mostly, I have met autistic people in realtime, and have learned a lot about autism, and therefore myself, from participating in support groups, and of course from attending lectures and AANE conferences like this one.

I have also been privileged to work with couples. At AANE, I have co-facilitated many series of support groups for what I call neuroexceptional couples, meaning that one or both partners identifies as not being neurotypical. In the course of that work, I have met dozens of couples of all manner of intriguing backgrounds, interests, and challenges.

I’ve also talked with and helped many parents of autistic kids, and I’ve given talks to autistic adolescents. I’ve taught college classes and I’ve served on many Boards and Advisory Committees. I’ve read, I’ve seen movies, I’ve been an adviser for a play – a romantic comedy in which one of the characters is an Asperger’s professor. I have even started my own tongue-in-cheek Autistic Hall of Fame on my blog, because after having met so many autistic people, and gotten to know many of them at a fairly deep level, I think I can spot autistic people from the way they are described, either as historical characters or in contemporary life.

I suspect that this kind of recognition helps good clinicians do what they do. Although I’m sure they have a disciplined way of rating people, if you’ve met and spent a lot of time in conversation with a large number of autistic people, as I have, you really don’t need a checklist to identify someone who is autistic.

In my learning of what it is, and what it means, to be autistic, I have also learned something that I never used to comprehend; namely, what it is like to be not autistic. I have been shocked to learn how very very different I am from most people in this world. I never really comprehended that before.

I wish I could say that learning about myself, and who I really am, and what I am like, has been an entirely positive experience, but it has not been. It is true that I have learned much that has set me at ease about things that used to bother me. I have made huge strides in dealing with stress and depression. I have learned to enjoy, yes! actually enjoy, small talk. Many of the common interpersonal encounters I experience in the course of the day are now a source of joy to me, and are fun, instead of producing the excruciating discomfort I endured during most of my years on this planet. I now travel through this world on a much smoother road, with a greater sense of pleasure and well-being than I have known for most of my life.

The person you see before you today is someone who is at peace with himself and with the world. Someone who is certainly not care-free, but who is not paralyzed by anxiety, either. Someone who holds, with some trepidation, the view that all of life’s challenges can be met and resolved in some way or another, to produce a satisfactory outcome.

It has not always been this way. I have seen the dark side of life. Not all of my struggles were related to my autism, but I can see now that autism helps to explain why I had so much trouble with certain things. And also, by the way, why I was so successful at other things.

And yet, there is that dark side. I also now understand that my inability to do self-perspective-taking and to read others and to see my effect on them created pain for many of the people in my life, both people I was close to and people who didn’t know me well but cared about me.

I’m not going to dwell on that dark side here today. I have told some of those stories before, and I have seen people weep, because they know my pain was real, and they can relate to it in one way or another. And I can relive all of that pain in a heartbeat when I think back on those things. I want to apologize to the world for not understanding myself, for all the meltdowns, for my withdrawal into miasmas of depression. But, at the time, I didn’t know how to do emotional regulation. I tried, but I often failed.

I didn’t understand how truly different I am, and living in this alien world was often frustrating beyond endurance. So I made mistakes, and I regret that. But I also am comforted to know that I never did those things with the intention of harming others. My actions often caused pain for others, I can see that now, but that was never my intention. I was protecting myself, reacting to a stressful world that was bearing in on me.

So, let me leave that part of me aside for today, although I can assure you it was there. All of the bad things you know about being autistic, I have experienced. Today, when I tell people I’m autistic, I often receive what I know is meant to be a compliment, “Oh, I never would have known!” or “Oh, well, you can’t be very autistic.”

What do I say to that? “You’ve got to be fookin kidding me!” or “Gee, thanks, I’m so glad I can fool you!” or “Yeah? Well, just try being me if you think it’s such a piece of cake!” but, no, I usually smile, because I know they mean well, and I say something like, “Well, I’m old; I’ve learned a lot,” which is true enough.

Once, in a talk, I described autism as a two-sided coin. My point was that you couldn’t throw away the dark side of autism without also destroying the wonderful side as well. This comes back to the sensory issues I mentioned earlier. Sensory overload is a source of confusion, slow processing, and outright pain for those of us who are autistic. But, the flip side of it is the intensity of positive experiences; the capacity to experience great joy, and to see the world in wondrous ways. Of course, generalities are dangerous. Every autistic person experiences the world in their own way, just like everyone else.

After the talk I just mentioned, I was scolded by a psychiatrist friend of mine for displaying typical Aspergerian black and white thinking. I asked him why he said that, and he explained it was because I saw only a two-sided coin. All right, then, I countered, how about this? Autism is a multi-faceted jewel that takes on a different appearance depending on how you hold it up to the light. Or a rainbow! (Think of that infamous spectrum that no one has ever been able to explain to me.) Yes, autism has dark colors, but it has many bright ones, too.

I’m reminded of Tim Page, who spoke a while back at an AANE event maybe you were there. He told the story of wondering what people meant when they told him he was an outstanding music critic because he thought outside the box. He didn’t know what they were talking about because he never saw any box.

In the years since the phrase became a cliché, I have received any number of compliments for my supposed ability to “think outside the box.” Actually, it has been a struggle for me to perceive just what these “boxes” were—why they were there, why other people regarded them as important, where their borderlines might be, how to live safely within and without them. My efforts have been only partly successful: after fifty-two years, I am left with the melancholy sensation that my life has been spent in a perpetual state of parallel play, alongside, but distinctly apart from, the rest of humanity.

And many autistic people I know joke about this expression. “What box?” they say. And, I would have to say, that was one of my features that enabled me to be successful in a creative career in finance. But not seeing boundaries can also be dangerous when those boundaries are social or legal ones.

Being autistic is not just a struggle, although it is that. Being autistic in an alien world can be frustrating and confusing. But 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.

Forgive me for another generalization, but it seems to me that the autistic personality is composed of such stark contrasts. 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.

If this idea of the intensity of autism intrigues you, I recommend that you learn about The Intense World Theory of Autism, if you haven’t already. This has been proposed by a couple of Swiss neuroscientists as a way to explain what we observe in autism; an intense reaction to stimulation of all kinds. I have written a post about this theory, and there is a link there to a good explanation of the Markrams’ work. 

[As an aside, I should mention that in my writing I sometimes refer to “mirror neurons” or the “mirror neuron system” as though such things exist in the physical world. I’m well aware that there is no evidence that there are actual neurons that specialize in this function, so I use the terms in a metaphorical sense. The brain accomplishes the functions that are attributed to these mythical neurons, and, however that is done, the outcome of that process is all that matters.]

Many of the myths and misunderstandings about autism seem to revolve around a misunderstanding of the very nature of the intensity of autistic experience. One example of this is the role of central coherence. It has been a long-standing myth that autistic people are poor at central coherence, which is the ability to see the big picture, or more colequially, to see the forest for the trees.

The Kanwisher Lab at MIT has conducted some experiments that debunk this myth. Nancy Kanwisher presented their results at a research conference sponsored by AANE and others. Perhaps you were there. She talked about how autistic people see the world.

Yes, we do see the trees. In fact, we see the bark on the trees. But we also see the forest. It’s just that if you ask us to describe what we see, we will tell you about the bark, because that’s a lot more interesting to us. So, Kanwisher concludes, autistic people have a preference for detail, not a deficit in comprehending the big picture.

Another place intensity shows up is in the role of empathy and the overloaded emotional life of autistics. I’ve always been a peacemaker and a diplomat. I hate to see people in conflict. It pains me. I’m the Town Moderator in my town, something I’ve been doing for the past dozen years or so. This past week, I ran a Special Town Meeting that had only two Articles. One was not controversial, but it was complex, so I made sure that the experts were there to explain it, and I smoothed the feathers of those who were impatient and just wanted to vote. That Article didn’t take long.

The second Article was extremely controversial, and had I sought out advice in advance from my fellow Moderators in the Massachusetts Moderators Association; I conferred with Town Counsel, the Select Board, the Finance Committee, and the Town Clerk. My main concern (other than to run the Meeting in an orderly way) was to be sure that both proponents and opponents felt they were treated fairly and had an opportunity to be heard. In the event, the conversation lasted over two hours. Afterward, several people came up to me and said nice things about how I had conducted the Meeting.

Why do I mention all of this? Because it’s just one example, among oh so many, of my diplomacy skills. But more than that – it’s not just a skill, but a need to bring people together, and the pain that comes from witnessing conflict. If that’s not empathy, I don’t know what is.

Back in the 1980s, while I was living and working in New York City, I started a professional group called QWAFAFEW. Yes, it was a drinking society, but it also had a serious purpose. It was about bringing people together to share knowledge; to read and discuss academic papers, to critique each other’s work, and to develop friendships instead of rivalries, even though many of us worked for competing firms. When I moved to Boston a few years later, I brought the idea with me, and there are now chapters all over; not just in New York and Boston, but in Chicago, Denver, San Francisco, Philadelphia, and many other cities. I guess it was a good idea.

Did you see the article that appeared in the Guardian a couple of years ago, talking about Harvard’s new policy of asking its researchers not to support journals that have a paywall? I applaud that, because that is exactly in the spirit of what I was trying to promote; community and sharing.

More recently, I served on the Massachusetts Special Commission Relative to Autism. If you are at all familiar with the internal politics of the autism community, you will know that there is constant bickering over a whole host of things; causes, cures, and treatments versus the rejection of those concepts. And that is just one short list of controversies; there are many many more, as you know.

Yet, I was able to work with people who had views diametrically opposed to mine, as painful as that was at times, personally, because I knew that we could all work together toward common purpose and benefit, even if we couldn’t agree on all the details. I attended nearly every meeting of the Commission, and then I volunteered to help draft the report, which required many more meetings of a small core group. I wrote whole sections of the report, and made suggestions about most of the rest. Many of my suggestions were rejected because, ya know, I was on the radical fringe. I guess.

Along the way, I met and befriended many wonderful people. I’m especially proud of the work I did, along with my colleagues here at AANE, on the legislation to expand DDS services to autistic adults and to eliminate the IQ test for all developmental disabilities. This was truly a group effort, involving many people, but I think I played a key role in helping to coordinate getting things done. I persuaded an attorney in one non-profit to craft the legislation to my specifications, despite their initial objections that it didn’t have a chance to pass and therefore was not worth spending time on. Along with many of my friends and colleagues at AANE, where I served at the time on the Board and the Advocacy Committee (or AdCom, as we called it), there were many visits to the State House to persuade legislators to support us. I gave testimony in hearings, and the AdCom under the guidance of Chair Lucy Berrington, collected hundreds of pages of written testimony and prepared information packets for legislators. I spoke with Commissioners and Secretaries and Assistant Secretaries and receptionists and the Governor and legislative staff and just about anyone who would listen. In the end, that bill, in combination with many others, passed both chambers of the legislature unanimously.

In all of these things, I grew; in knowledge, and as a person. Ten years ago, I knew nothing about autism. Today, I don’t claim to be an expert on autism, but I sure have a lot of opinions! And, the truth is, I think you could call me an authority on what it is like to be autistic.

And I’m going to continue to learn more. Here is a list of some of the things I keep track of on Facebook, Twitter, and websites. My interest in all things related to autism, by the way, is an example of what is often derisively called a “special interest.” As an autistic friend of mine has said, why do they call it a “special interest” when you are young, as though that were a bad thing, but when you are an adult with a keen interest in a specialty, they call you “Professor”?!

List-of-Interests-Copy_0

Another myth has to do with friendship. I’ve met autistic people who have great difficulty making and keeping friends. And I know autistic people who are focused on pursuing their own activities on their own terms, and don’t seem to have much interest in collecting friends. But I don’t see this as a central feature of autism. I just returned, earlier this month, from a trip to Mount Washington, where I climbed up (and down) Lion’s Head Trail with a group of friends. Some of these people I’ve known for over 30 years. And this summer, with a different group of friends, I hiked 11 times on Mount Greylock; hikes of 6 or 7 miles each. And I did other hikes with yet other friends. Another friend and I go for 2-hour horseback rides. There’s that friend thing again! – I just have too many of them to be autistic! NOT!

With all that as background, I have left a little time to speak specifically about growth. Everything I say here today is but a small random sample of what I could say on all of these topics. Forgive the nonlinearity of it all, and welcome to the inside of a brain that thinks in concepts, not in words, on multiple tracks simultaneously at all times, and has trouble unwinding all that spaghetti into a single strand.

I have told you a lot of different stories here today, but the common theme has been growth. Growing up. And growing old. Growing old disgracefully, or any way you can. Growth means change.

You’ve all heard of neuroplasticity, the most talked-about revolutionary scientific discovery in neuroscience of the past few years. Neuroplasticity refers to the brain’s ability to change. Neuroplasticity is a fancy word for what we used to call “learning.” We learn by memorizing, or practicing a skill, and in order for us to remember what we learn, the brain has to change, by recording the knowledge or the steps in an activity. To be fair, neuroplasticity may be a broader concept, since learning implies a conscious effort, I suppose; whereas neuroplasticity also includes changes in behaviors that are controlled by our subconscious mind, as well as parts of the brain that control physical activity and other things.

Blind people, for example, seem to develop a keen sense of touch by repurposing parts of the brain that in sighted people are used to process optical information. Violinists have been found to have enlarged areas of the brain where movements in the left-hand fingers are controlled. Musicians are often cited as examples of neuroplasticity

And the autistic brain may be more plastic than most, according to preliminary findings of recent research. If so, and there are anecdotal reasons to believe this, then we can learn and change faster than the Average Person. At the opposite end of the neuroplasticity spectrum, by the way, are people with the unfortunate condition known as senility. At the extreme, people are unable to learn new things. They can remember things that happened to them years ago, but not what they had for breakfast, or even if they had breakfast. I’m oversimplifying, of course, but I only have an hour!

Wisdom comes with age. Most traditional societies revere or honor elders, and respect them for their wisdom. I think there is a simple explanation for this, and it has nothing to do with autism. Wisdom truly does come with age. When you are young, every incident is a new experience, and you have to deal with it on its own terms. As you age, you begin to see patterns, and you are able to generalize.

The difference that autism makes is that everything takes longer. The reasons for this are both physical and procedural. The autistic brain takes longer to mature, and because of the slow processing time and the difficulty of handling the information and sensory overload I mentioned earlier, insight comes more slowly, both on a day-to-day basis and over the lifetime. At least that is my experience.

And herein lies one of the dangers that confront a person who is slow to develop skills, compared with most people in this world. Social and peer pressure may create unrealistic expectations at too early an age, and under this pressure, an autistic person may develop coping mechanisms that are less than ideal. Once ingrained, bad habits can be hard to break. Additionally, as we know, one of the ways autistic people cope with overload is to rely on rituals and routines, which become mindless and remove some of the demands for decision-making from an overloaded brain. While routines can be comforting and reduce stress, they can also be maladaptive.

The good news is that, as I mentioned, the autistic brain seems to be more plastic than the typical brain, so we can learn new ways of doing things quickly. First, however, we must have the cognition that this is necessary, and the will do make the change. This is probably why Cognitive Behavioral Therapy seems to be quite helpful to a lot of autistic people. Also, any number of other techniques that invoke mindfulness. Look what came in the mail yesterday!

7 SA Medidation

Today, I have talked with you about how I grew up. Yes, how I grew up disgracefully. How I changed. How I modified dysfunctional, or nonadaptive, behaviors. How I learned to adopt a new worldview, and to think of myself in a new and different way.

All the growth and the progress that I have described to you today did not happen overnight, of course, but was a transformation many years in the making. Growth and change is a lifelong process of soul-searching and self-improvement. Some important things I learned to do many years ago, long before I knew about autism. But the most rapid transformation I have ever experienced came within the past few years. Learning that I am autistic, and what that means, has been a truly transformative process. In the beginning, it was heart-wrenching and traumatizing. As my self-delusions and misunderstandings were stripped away, my nerves were left exposed and raw.

Gradually, however, as I came to understand and accept myself, I began to be at peace with myself, and to relax more and enjoy the world as never before.

And I’m not done yet.

If you are young and autistic today, you have many advantages that I did not enjoy. Knowledge, understanding, and acceptance of autism have grown exponentially in recent years. As a consequence, the odds of your finding your way in this world are much better today than they’ve ever been. But that doesn’t mean it will be easy. And not everyone will succeed. But that’s also true if you’re not autistic. Yes, we have a disability, one that can be crippling at times, and that hasn’t changed. But the tools that are out there now are significantly better, and the support networks in place are a godsend that didn’t exist when I was young.

That said, there is still a lot of misunderstanding and prejudice out there in the world. Just this past week, for example, Newsweek published a truly awful story about a mother who murdered her autistic 8-year-old son. Here is a critique of that story, written by an autistic scientist.

So I say to you, who are Asperger’s or autistic, or who have family members or friends who are, don’t ever think that the way things are today are the way things will always be.

I speak of growing old. Funny, but I don’t feel old.

I think back to the time my father told me, near the end of his life, how he felt about going on. He knew he didn’t have much longer, but he told me, “I don’t want to die, because I’m so curious about what’s going to happen tomorrow!” I now know, with as much certainty as I can imagine, that he was, like me, Aspergerian. We never discussed this, because I didn’t know anything about autism while he was still alive. He also told me that every morning, in the nursing home, when he got the Berkshire Eagle, he would turn immediately to the obituary page to see if they had spelled his name right. He lived to be 80, and, nothing personal, Dad, but I hope to outdo you.

I’m just getting warmed up. And the future stretches out in front of me. I can’t wait to get started.

Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference

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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