Statement on DSM-5 by ASAN and ASA

Joint
ASAN-Autism Society Statement on DSM-5

Dear Friend, 

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

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

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

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

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

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

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

 Sincerely, 

 

Ari Ne’eman
President of Autistic Self Advocacy Network
aneeman {at} autisticadvocacy(.)org

Scott Badesch
President of  Autism Society

sbadesch {at} autism-society(.)org

 

 

Is It Time to Abandon the DSM?

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

January 20, 2012

©2012 Michael Forbes Wilcox

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

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

The American Psychiatric Association Is No Longer Relevant

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

Autism Is Not a Psychiatric Condition

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

I welcome feedback and comments.

On Beyond Zebra

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

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

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

Lost That Lovin’ Feeling?

 

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

The illusion of multi-tasking

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

 

Charles: Can relate to this.

Linda: Lmao so can I

John: you can be both sir

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

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

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

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

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

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

“You’re gifted!” she replied

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

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

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

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

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

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

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

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

Charles: I think they need more research!

 

I am autisitc. Why do you think I am so different?

I am autistic. Hath not an autistic eyes? hath not an autistic hands, organs, dimensions, senses, affections, passions? fed with the same food, hurt with the same weapons, subject to the same diseases, healed by the same means, warmed and cooled by the same winter and summer, as a neurotypical is? If you prick us, do we not bleed? if you tickle us, do we not laugh? if you poison us, do we not die? and if you wrong us, shall we not revenge? If we are like you in the rest, we will resemble you in that.

based on text from The Merchant of Venice in MIT’s Shakespeare.

Some thoughts on pets

A friend who is the mother of a young autistic boy has posted a picture of her son meeting the family’s new pet, a golden retriever puppy. She writes that her son “demonstrates the appropriate way to greet a new pet: by smelling it, of course.”

My response was;

I’ve always enjoyed the smells of (some) animals. Not fish, though. Anything that smells fishy (including seaweed) literally turns my stomach. Skunks, though, yum! Dogs and cats — nothing like getting my face into their fur! I love the way horses smell — it’s one of the joys of horseback riding. I think many autistics have a special connection with animals, and pets can be comforting and true friends.

Many, many years before I was diagnosed, I had a friend say to me, “You’re the only person I know who asks a dog a question and then waits for an answer!” I told that to another friend, who added, “You’re the only person I know who would understand the answer!”

———-

Pets are important to many people, of course, not just to autistics. Still, I think they may play a special role for those of us who have had trouble feeling accepted by our human peers. Pets seem to give unconditional love, and that is rare for us to find.

I think I will reread the story “Happiness is a Warm Puppy” and give some thought to the special role that pets have played (and continue to play) in my life. I have many other things to write about first, but I’ll circle back here at some point and expand on these thoughts.

As I write this, my cat Tigger (my father used to read us the Winnie the Pooh stories, and they were my absolute favorites!) came into my office and jumped up on my desk, as if to say, why did you leave the bed so early?

———-

A later addition:

A friend of my friend wrote, “My son has been know to try to ‘bite’ our puppy back as well. Literal thinking, I guess… 🙂

and I responded, “Interesting. Biting back has nothing to do with literal thinking, in my mind. It is an instinctive behavior that animals have to establish boundaries and dominance. I see it all the time in my horses and cats.

It might just be imitative behavior, searching for affection, trying to be like the other. My cats like to nibble on my fingers for some reason, so I let them, as long as they don’t hurt me. If they bite too hard I yell “ouch” and they stop, and apologize. Again, it’s simply a matter of setting boundaries.

I don’t know if you ever read “The Horse Whisperer” but that book describes what I knew intuitively. The best way to get a horse (or any other animal, including humans) to do what you want is to become friends. We all have an urge to please others, and, as they say, you can attract more flies with honey than with vinegar. (No one ever explained to me why you would want to attract flies — now, *that’s* literal thinking!)

So, the biting could be a lot of things, but I don’t know how it could be “literal” if there are no words involved!“

On Perfectionism

Regular readers of my blog (and I know I have at least 2 or 3 — or so they claim!) will know that I have obsessed lately with my speculation that Steve Jobs was autistic.

Every community likes to have its heroes, and I’d like to claim Jobs as one of ours. Whether or not he was autistic, he is still a hero to me for all that he accomplished. Not every genius is autistic, any more than every autistic is a genius. We have already claimed Einstein, and rightly so! There are many others.

One of the things that has fascinated me about Jobs is how nearly every description of him (and I’ve read many, only some of which I reference in my post) talks about his perfectionism. Here’s an example, by Malcolm Gladwell. One trait does not alone make for a diagnosis, I realize, but one could hardly be autistic, I believe, without a tendency toward being a perfectionist.

So, view this short entry as the beginning of an essay on perfectionism, and a place for me to add/subtract/edit my thoughts as I develop them. Here’s what started me thinking about this topic today:

I finished a painting project in my living room (pictures below). House painting, that is, not artistic painting — I have no talent for that! It was the last piece of a larger project to repaint my entire dining room/living room area (no wall separates them). It was a 2-person job, and I did only a small part of it (in terms of surface area). The room is approximately 15′ x 30′ and there are two beams (wooden coverings of supporting metal I-beams) that run the 15′ way. There are two windows that are about 9′ long and maybe 4′ high, that are divided into 3 panels (that open out), with 6 lights in each.

In addition, there are a couple of built-in bookcases, and (of course) walls and the ceiling. About a month ago, all that was left was one beam (I had painted the other — and nothing else!) and one window. I agreed I would do those two things. Well, of course, I’ve had lots of excuses — snowstorms, travel, etc.; but, truly, it wasn’t a huge project. Still, I find such work intimidating.

One day, I painted the second beam. Not too bad. It went well, looked good, and took me only an hour or two. I figured I could knock off the window in a couple of hours or so. Wrong!

On a bright, sunny, warm day, I got out all the tools and supplies and tackled the leftmost part. By the time I had finished the entire left panel and surrounding woodwork, an hour and a half had passed, and I was exhausted! Besides the physical discomfort of raising my hands above my shoulders (I have ancient rotator cuff injuries in both shoulders), the work required intense concentration on very small pieces of wood, and my attention span can extend, when challenged, to about ten minutes. [I sense another post coming up “On Why ADHD and Autism are Indistinguishable”!]

So, realizing that I could not do another panel before dark, and feeling somewhat disappointed with the quality of my work (it was not nearly as easy as painting the broad, flat surfaces of the beams!), I threw in the towel (or the paint rag, as the case may be).

Another day, I did the middle panel, and had the same feeling of disappointment. I just didn’t know what the problem was; whether the paint was getting old and thick, whether the brushes needed to be replaced, whether the quality of the wood was somehow different, whether the fact that is was a window meant that it was more weathered, some or all of the above plus other things? Anyway, I wasn’t happy with the quality of my work.

Today, I finished the project. Same pain, same complaints. I tried to adjust the outcome by letting parts of it dry and then going over it again. A bit better, but NOT PERFECT!

Here’s a shot of the finished product, showing part of one beam and a section of the window:

The entire window, from a different angle:

Tigger demonstrates his keen interest in my project:

Once I was done, I had a great feeling of satisfaction. It was truly a noteworthy feat that I had stuck it out; persevered until it was all done. I hear the chorus out there: “What’s the big deal?” Well, for me, it is. I have abandoned many projects and left them undone because they were not going as well as I had expected.

So, I stepped back to evaluate what I had done. It looked pretty good. How would I rate my own work? Well, that would depend on your standard. If your standard is, “Does it look a lot better than it did when you started?” then the answer is “Heck, yeah!”

If your standard, like mine, is perfection, and the question is “Is it perfect?” then the answer is, “Heck, no!”

So, how do I rate my performance? I failed. To make it more personal, I am a failure.

If your standard is perfection, you are destined for a lifetime of disappointments. Yet, it can also be a driving force, propelling you on to great heights, as seems to have been the case with Steve Jobs. Evidently, Jobs found a salve in Buddhism, in Zen meditation. I have found a path to acceptance in many ways, and yoga has been an important one. I have learned to respect my limitations. I have also worked hard at appreciating my accomplishments, and to not dwell on the things undone. That does not come easily to me, and I think that is part and parcel of my autism. It is so hard to see the glass as half full. It is worth the effort.

The Challenges of “Executive Function”

Update on November 14:

Yesterday, I finished bringing Quicken up to date through July. Only 3 more statements to go before I actually know how much money I have on hand! AND I finished a painting project! What is going on here? Am I growing an Executive Function? Ω

———-

So proud of myself today! I just reconciled (on Quicken) my February bank statement. I haven’t yet received my November statement, so technically I wasn’t quite ten months behind, but close enough!

Now that I’ve broken the ice-jam, I will be able to focus on this project, and bring myself up to date in short order. It’s one of those chores I hate to do, so I put it off till tomorrow, which turns into a week, then a month, then several months; until I have very little idea of just how much money I really have on hand.

This has both practical and psychological penalties. I become paralyzed when it comes time to pay some big bills, because I’m afraid that I might write a check that’s too large for my bank balance. Then, I get anxious about the possibility of falling behind on important obligations (like my property tax, for example), and this leads to further paralysis and avoidance of the whole issue. My tax bill is here? Okay, I guess it’s time to do some yardwork!

Why is this so difficult for me? After all, I made my living as a financial analyst! I am a Chartered Financial Analyst (CFA), which in the investment industry carries about the same weight as an MBA (maybe more!). I have a graduate degree in economics. I published extensively on all kinds of investment subject; stocks, bonds, international diversification, security valuation, pricing of futures, forecasting foreign exchange rates, and on and on.

Well, the essential difference is, I think, that my mind can grasp financial theory; I can study equations and play with them until they become friends, I can visualize probability distributions in my head, and predict how they will change if parameters are modified. In fact, I loved doing this, and found it fascinating, stimulating, and satisfying.

But, balancing my checkbook? How boring! I mean, who really cares; it’s such a pedestrian thing to do! Sorta like washing the dishes or vacuuming. Sure, I like living in a clean space, but if it’s a bit messy, it doesn’t bother me because I can visualize what it looks like when it’s neat and clean, and that’s enough for me.

Well, all of that makes a nice story, and parts of it may even be amusing, but it’s not necessarily fun to live this way; it is a great source of anxiety for many reasons. One is a sense of personal failure. I should be able to keep track of my personal finances. I know how to do it, and I know it’s important, so why don’t I do it very well?

As I’ve learned more and more about my autism, I’ve come to forgive myself for lapses like this. I now realize that using what psychologists call “executive function” is very difficult for me. I can set priorities in my mind; I know that keeping track of my bank balance is more important than raking leaves, yet I don’t “execute” those tasks in that order.

I am going to think and write more about this topic, so stay tuned for updates. For now, let me acknowledge that I have come to realize that I need help (my own version of a 12-step program, perhaps), and I have sought that out. But I also realize that I must take some personal responsibility for doing what I know is important.

I recognized this some time ago, and resolved to do something about it. I came to the understanding that I had always lived an undisciplined life, and I vowed to change that. Yet, it is difficult to change behavior patterns developed over a long lifetime. Still, I know I can do it, and I shall! I call this “no more lilies” and have written this elsewhere:

My philosophy of life was a lot like Alfred E. Newman; “What, me worry?” Or, more elegantly, as expressed in these words from the Sermon on the Mount:

Therefore I say to you, do not worry about your life, what you will eat or what you will drink; nor about your body, what you will put on.Consider the lilies of the field, how they grow: they neither toil nor spin; and yet I say to you that even Solomon in all his glory was not arrayed like one of these.

Therefore do not worry about tomorrow, for tomorrow will worry about its own things. Sufficient for the day is its own trouble.

For most of my life, whenever I was feeling down and out (which was often), I would simply remind myself that somehow, things seemed to work out.

More anon!

Terrific Boston Globe op-ed on Autism

Today’s Globe features a column that is a wonderful explanation of the recent work of Dr. Laurent Mottron at the University of Montreal (which, thankfully, has gotten a lot of press in recent days; e.g. see this mention in Science Daily of November 2).

The Globe columnist, Gareth Cook, writes to tell us “The truth about autism” and he does so with kindness and a rare appreciation and understanding. This column is a breath of fresh air, and will be greatly appreciated by the neurodiversity movement.

His conclusion is “There is, of course, a strong ethical case for change. But there is also another way of thinking about it, which Americans, in particular, should understand: Tapping unusual minds provides a competitive advantage to companies – and to nations. Recognize the hidden strengths of our people, and we will all be the richer for it.”

But read the entire article; I found it quite compelling!

My appearance on “Where We Live” on WNPR November 2, 2011

Update on November 5:

I have now listened to the replay, and am totally favorably impressed with the job that John Dankosky did in directing the conversation. He was able to involve many callers in the discussion, and gave each panelist a chance to respond. I, of course, am not a totally unbiased observer, but I do believe the professionalism on display here deserves some kudos!

———

I haven’t yet had time to listen to this radio show from yesterday, which was a lot of fun for me.

There were three other panelists (as well as a call-in participant), and the host, John Dankosky, did an excellent job of fielding call-in questions and farming them out to the four of us.

I’ll have more to say once I have had time to listen and to read the comments that have been made.

——-
Host: