Nov 06

The Healing Power of Depression

Depression is a common experience. The word itself conjures up negativity, and has many definitions, none of which is particularly cheerful. Depression has been the subject of many wise and unwise words over the ages.

 

Henry Wadsworth Longfellow

“Every man has his secret sorrows which the world knows not; and often times we call a man cold when he is only sad.”
― Henry Wadsworth Longfellow

I cannot remember a time when depression was not my companion. Over the years, I have made peace with my companion, and depression has changed from an antagonist to a friend.

 

T.H. White

“The best thing for being sad,” replied Merlin, beginning to puff and blow, “is to learn something. That’s the only thing that never fails. You may grow old and trembling in your anatomies, you may lie awake at night listening to the disorder of your veins, you may miss your only love, you may see the world about you devastated by evil lunatics, or know your honour trampled in the sewers of baser minds. There is only one thing for it then — to learn. Learn why the world wags and what wags it. That is the only thing which the mind can never exhaust, never alienate, never be tortured by, never fear or distrust, and never dream of regretting. Learning is the only thing for you. Look what a lot of things there are to learn.”
― T.H. White, The Once and Future King
Perhaps I have learned something about learning in my long years. I have never lost my love for learning. I would have made an excellent perpetual student, but somehow the need to earn a living drew me in other directions. I had many jobs I truly loved, but the best ones were the ones that challenged my intellect and required me to absorb, and even create, new knowledge. I spent many years as a quantitative financial analyst, which, in one guise or another, occupied my life from the time I was about 30 until I retired.

Over the years, I experienced many bouts of depression, some of them quite debilitating, but I was usually able to rally when it came time to go to work or school.

 

John Keats

“Do you not see how necessary a world of pains and troubles is to school an intelligence and make it a soul?”

I don’t know if I would have prescribed depression to myself as a way to form a soul, but now, having been through the fires of hell, I can see how it helped forge my character into one of steel, for better or for worse. Part of the steel that was forged in those fires makes up the ball that I pull around myself when the world is too much with me. I described this to a good friend recently. She remembered our time together many years ago and said, “Yes, I wanted to knock on it and ask you if you were still there and if you were ever coming out again.”

Part of that steel, on the other hand, went into stiffening my spine, and giving me the ability to carry on when cognition alone would have told me things are hopeless. Every human being possesses an abundance of self-overestimation, which is indeed what gives us the power to persevere when the odds are against us. But perhaps those of us who have lived through depression are blessed with an even greater sense of self-assurance that nothing can be so bad that it can’t be endured.

 

Margaret Atwood

“I don’t want to see anyone. I lie in the bedroom with the curtains drawn and nothingness washing over me like a sluggish wave. Whatever is happening to me is my own fault. I have done something wrong, something so huge I can’t even see it, something that’s drowning me. I am inadequate and stupid, without worth. I might as well be dead.”
― Margaret Atwood, Cat’s Eye

The feeling of worthlessness that comes with depression is all-consuming, powerful, and enervating. It is a time when one feels unworthy to live, and it is perhaps at these times that the risk of suicide is highest. At the time, it doesn’t feel like there is too much of a distinction between feeling that one might as well be dead and actually being dead.

Even those of us who escape those suicidal thoughts and impulses, however, may never shake the feeling that somehow we are not worthy to live in this world. For me, I never made any serious suicide plans or attempts, but maybe that was more because I was afraid of failure than that I didn’t think it was a good idea.

For as long as I can remember, I knew I was different. As a youngster, I knew I was better at some things than were others, but I was also keenly aware of feeling that I did not fit in. I continually managed to get into trouble with the adult world in one way or another, and sometimes my run-ins would bring visible grief to my parents, which distressed me greatly.

As I grew out of my adolescence into adulthood, I began to think of myself as a carrier of a defective gene, and I became determined never to have children. I did not want to pass along to innocent children the agony that I had endured. Plus, I could not picture being the father of such a child, having witnessed the pain that my parents went through because of me. Years later, I was able to laugh at myself (at least a little). One time, I took a friend to visit my mother, and jokingly told of some of the incidents of my childhood. My friend turned to my mother and asked, “Mrs. Wilcox, how did you ever put up with all of that?” My mother laughed and responded, “I would do it all over again!” I was thunderstruck by that response.

Still, I never lost my aversion to having children, and it wasn’t until I was 60 years old and learned about my Asperger’s/autism that I was able to understand my difference in a more positive light.

 

Elizabeth Wurtzel

“That is all I want in life: for this pain to seem purposeful.”
― Elizabeth Wurtzel, Prozac Nation

Now that I can look back, with the perspective of my understanding of being neuroexceptional, I can see things in a new way. I thought long and hard about what I came to call my Anxiety Cycle, which I recognized was part of my life in large and small ways every day. I might experience several in one day, and they might be overlapping. Some could end in minutes, others could drag on for days. They all started with the accumulation of stress, which triggered a reaction and a response. Inevitably, the end of each cycle was a period of depression, however brief or long it might be.

As I pondered this, and as I observed myself going through these inevitable cycles, I began to understand the purpose of depression. By the time I got to that point in my cycle (and depression, for me, does not arise from nowhere; it is definitely triggered by a cascade of anxiety, even if I can’t quite put my finger on what that was all about), I had reached the end of the road. The worst had already happened. The stress that had triggered the anxiety had already been dealt with, and depression was a time of healing, of rest, of picking up the pieces.

And that is how I came to think of depression as a friend, not an antagonist. When I get to that point, I can take a deep breath, and use my new mantra. I have taken up the phrase “this, too, shall pass” to calm myself when all seems bleak.

I should mention medication. For most of my adult life, I have sought help from a variety of psychotherapists for anxiety, behavioral modifications, and just to try to understand myself better. Some have been more helpful than others, but one common theme is that most of them suggested that I consider medication for depression or anxiety. That suggestion has also come from several medical doctors, sometimes emphatically.

I had always resisted taking medication for my depression. I felt that was treating the symptoms of whatever was bothering me, not the causes, and I wanted to understand where the depression was coming from, not to mask it.

It wasn’t until I received my diagnosis of Asperger Syndrome that I began to seriously consider taking medication. At the clinic where I was diagnosed, there was a psychiatrist who was able to explain all of the types of drugs that were available, and the effects (and side effects) that each had. I decided to try some clonazepam, and I’m glad I did. It did reduce my anxiety (that feeling of a racing heart in a constricted chest), but more importantly I think, it extended my reaction time, so that I had some time (a few milliseconds perhaps) to think about how I was going to respond before I did something rash. Being able to develop a sense of mindfulness was what brought me into the realization of how my anxiety cycle works, and how even I could learn to do emotional regulation, something I had failed at all my life.

After a few years of taking this medication, I felt less a need for it as I gained control of my own impulses and understood my natural rhythms. I now keep a bottle of pills on hand, but seldom open it. It’s there if I feel anxious, or if I know I am going into a stressful social situation, but for the most part I don’t need it.

In many ways, I have healed myself, and with the aid of some temporary medication and my new mantra, I have learned to make that healing process an ongoing one.

Nov 04

The Turing Problem

I just listened to a 20-minute radio segment that reduced me to tears. Alan Turing was a hero of mine long before I knew anything about autism. Once I discovered my own autism and began to be able to see signs of autism in people I knew, either personally or from reading about them, I began to nominate some of them to my own Autism Hall of Fame. Certainly Turing belongs there (in my mind at least).

Turing was openly gay in an era when that was illegal where he lived (in England), and he was also a War Hero, having cracked the German ciphers generated by their Enigma Machine. He met a tragic end; a life shortened by prejudice and faulty science. He may have had a lot more to offer the world; we’ll never know. He was clearly a genius whose insights transformed human society. The proof of that is before your eyes.

I’m sure many of my friends know the story of Alan Turing, but whether you do or you don’t, this podcast is worth a listen. Highly recommended.

Nov 04

Stewart’s Background

A few years ago (in 2005) I wrote up this background material on my horse Stewart. In a couple of months, he’ll be 20 years old. He is still as feisty and energetic as ever, but he has calmed down some in important ways, has come to trust me more, and our mutual affection continues to grow.

When he came to me, after retiring from his racing career, he had the nickname “Doc” which I didn’t much like. The name didn’t seem to fit his personality, which was more majestic than that. Perhaps I also had a negative association with Elmer Fudd, whom Bugs Bunny addressed with the line, “What’s Up, Doc?”

I named him Stewart after my mother’s father (Stewart Archibald Forbes), in honor of both of them. My mother had been a great horse lover in her youth, and my father’s sister (and therefore my Aunt) Jane, who is now 90 years old, remembers the two of them riding together often. When my mother was a teenager, her father was the caretaker for the Highwood Estate in Stockbridge, now part of Tanglewood.

The 1986 acquisition of the Highwood estate next to Tanglewood increased the festival’s public grounds by 40 percent and allowed for the construction of Seiji Ozawa Hall, which opened in 1994 along with the Leonard Bernstein Campus, which became the center for most Tanglewood Music Center activities.

Her father’s employer was a Boston dentist. In those days (the 1920s), there was reliable train service from Stockbridge and Lenox to Boston, and my grandfather’s job was to keep fresh flowers on the tables of the house, as well as eggs and vegetables available in the kitchen when the family was in residence during the summer, and to ship fresh eggs to Boston via the train, in special metal containers, during the other months of the year.

My mother was allowed to keep two horses in the family’s riding stable on the property, and she had Morgan horses.

When I was young, the closest I ever got to a horse was on a pony ride in the church fair. My family did not have the resources to spend on such things as horseback riding or skiing lessons. I learned how to do those things later in life.

I did like to watch the horses run, though. As a teenager, I would go to the Barrington Fair, mostly for the rides. But in between trying out the midway games, looking at the 4-H exhibits and the new tractors for sale, I would go and watch the horses race around the tiny track. I was fascinated by the idea of betting, so one time I mustered up $2 in free cash and sauntered over to the $2 window even though I knew that, at 14, I was too young to bet. “How old are you, son?” asked the ticket clerk. “Eighteen,” I lied. “Go away!” he waved me off with the back of his hand. “Why?” I asked. “You have to be 21!” he snarled. I slunk away, knowing that I didn’t look 18, let alone 21, but armed with my new knowledge, I found another window and tried again. In those days before picture IDs it was a lot easier to fake it. I guess the clerks only cared that you gave the right answer, not whether you were telling the truth.

I didn’t learn to ride till I was 40 years old, but when I did I wondered why I hadn’t been doing it all my life. A story for another day…

 

Aug 01

Brain Fitness, Alzheimer’s, and Autism

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

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

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

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

MFW in TMS Lab

MFW in the TMS Lab

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

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

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

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

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

 

Jul 30

The Art of Staying Focused

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

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

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

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

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

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

LS: I don’t think so…

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

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

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

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

From understanding comes acceptance.

 

 

Jul 24

Slides from a Workshop on Neuroexceptional Couples

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

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

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

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

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

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

 

Jul 17

Autism Acceptance: My Thoughts Captured in an Interview

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

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

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

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

Sample:

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

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

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

Jul 02

Caveat Emptor: TMS as Snake Oil

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

TRANSCRANIAL MAGNETIC STIMULATION FOR AUTISM

 

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

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

 

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

May 22

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

Testimony of

Michael F. Wilcox
217 East Road
Alford Massachusetts 01266
mfw@mfw.us

21 May 2013

to the Committee on Children, Families and Disabilities

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

May 20

DSM-5 Published to a Chorus of Criticism

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

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

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

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

With characteristic British understatement, the article goes on

Criticisms have come from almost every corner.

And lists quite a few, among them these:

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

and

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

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

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

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

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