Coming In March

DSM  5: A view from the trenches   by  Robert Naseef, Ph.D.  

A New York Times article on January 19 entitled “New Definition of Autism May Exclude Many” has started a panic in the autism community about the changes in the definition of autism scheduled for release in the DSM 5.  Are our children in danger of losing services?   Can we hurry science? Is anything really changing? These questions and more are perplexing the autism community and professionals as well.  I write from the perspective of a practicing psychologist and as the parent of an adult child with autism.

            Let's not lose sight of the bigger picture. The struggle to get and keep good services for a child diagnosed with autism has been the story of my life with my son for over 30 years. Anyone who cannot afford to pay for the services themselves has faced and continues to face the same uphill battle. I doubt that this will change in either direction with the new criteria.

Debates between experts are not new in autism but can be disturbing to families who are caught in the middle and don’t know what to believe. The firestorm we are witnessing is based upon an unpublished study founded upon questionable data that has not been reviewed by other scientists.  Psychiatrist Fred Volkmar from the Child Study Center at the Yale School of Medicine stepped down from the DSM committee, presented this data to the Icelandic Medical Association and then participated in the NY Times article.  It looks like Dr. Volkmar decided to take his issues with the DSM 5 autism criteria to the court of public opinion.

Based on this study, the New York Times reported that “about a quarter of those identified with classic autism in 1993 would not be so identified under the proposed criteria; about three-quarters of those with Asperger syndrome would not qualify; and 85 percent of those with P.D.D.-N.O.S. would not.”  No wonder that people are scared.  Access to services for all affected by the symptoms of autism is vital and any threat to this is terrifying. But we don’t really have evidence that this is what will happen with the DSM changes.   DSM 5 field trials are underway, and Autism Speaks and the Autism Society advocate for an in-depth assessment of the impact of the DSM 5 changes upon those currently receiving services.  

Every time I think I have my mind wrapped around the controversy, I read something else and become re-confused—at least temporarily.  Many colleagues who are mental health professionals are having the same reaction to DSM 5 changes in general, not just the autism criteria.  Change that can impact your family can be difficult, let alone when researchers and well known doctors are arguing on public forums.  If well-read professionals feel confused and concerned how are parents and others supposed to feel?  

In reviewing the children and adults diagnosed with autism in our psychology practice over the past 20 years, I have not come across anyone who would lose the autism diagnosis.  On the contrary, we have served many families whose children were misdiagnosed and undiagnosed several times before finally being correctly diagnosed with autism.  In recent years, because of the increased awareness of the symptoms of autism, we have also ruled out autism when it was suspected and not confirmed upon careful evaluation.

We have also observed for several years, that the autism diagnosis by itself does not lead to the level of services experts recommend. A two year old child just diagnosed with autism, for example, in most parts of the United States gets only a few hours of home based services per week, while experts recommend 25 hours of programming per week. Despite the increasing ability to diagnose autism spectrum disorders accurately in very young children, the actual practice lags behind.  Parents and professionals know all too well that the lack of or removal of services has been an ongoing threat.  Parents have had to argue the challenges faced by their child and their symptoms in order to get what their child needs regardless of the autism label. Many schools are poorly funded, especially in the inner cities and rural areas.  Staff is often inadequately trained, and there are too few opportunities for developing social skills by including children with autism with their same aged peers.  Even in relatively better funded school districts, services are often cut back especially when children make progress.

From my perspective, it is preposterous to say that over-diagnosis of autism is a major problem.  That position is in denial of the everyday life of families who love and care for children with the symptoms of autism.  Scientifically, we do not know how many currently diagnosed children and adults will no longer meet the new criteria.  The issue hinges upon how professionals will interpret the new definition.  That problem is nothing new.  DSM 4 and DSM 3 had the same problem. 

There is no doubt that there will be change.  In closely reviewing the new criteria, I think that DSM 5 brings clarity in describing what we have been calling the autism spectrum by officially recognizing the wide range or continuum of how autism impacts an individual.  There are other related issues which I am not addressing in this commentary.  For example, eliminating Asperger’s syndrome as a category is a serious problem for those who have lived and created a sense of community and identity with this label.  Whether the DSM 5 changes related to autism will be for the better or for the worse depends upon how families, people with autism, and professionals handle them.

Loving Someone with Asperger's Syndrome

My self-help book for partners of people with Asperger's syndrome has just been printed and is being sent to me as I write this.  It will be available in bookstores soon!  Alternatively, you can come to the book launch event that we are holding at our Alternative Choices office at 319 Vine Street, # 110 in Olde City Philadelphia, PA (19106) on Friday March 16 from 5:30-8pm.  It is a book that hopefully will help those of you in intimate relationships with someone who has AS to navigate a loving relationship with your partner.  I just found out today (not sure why it was a secret) that the publisher received at least 5 very favorable reviews from people who read the initial manuscript including Dan Gottlieb and Tony Attwood.  I am very much looking forward to your feedback about the book and about your experiences loving someone with Asperger's syndrome.  Cindy Ariel

Why are there so many songs about rainbows and what's on the other side? (by Cindy N. Ariel, Ph.D)

Because somebody thought of it, and someone believed it. That's what Kermit the Frog sings, anyway. And this is stuck in my head today for a number of reasons. The biggest is my concern about the so-called 'Cassandra Syndrome.' It sounds like a real syndrome but really isn't based in any serious peer reviewed research and isn't a real clinical syndrome listed in any of the usual manuals for professionally diagnosing syndromes and difficulties. Yet, I recently had a session with a married father with Asperger's syndrome who told me that he was working with his wife on a workbook for couples when they came upon a description of the Cassandra Syndrome wherein his wife started to tell him that she was a 'Cassandra' - a misunderstood, emotionally deprived and physically suffering victim of an empty emotionless relationship caused by him due to his AS. This accusation being thrown at a man who does indeed struggle to understand his wife and children and to be the best husband and dad he can be although it did take him years to finally get to a point of agreeing he needed to learn how to do these things. The accusation seemed extremely harsh. It was one-sided and unfair based on how much growth and work this guy has put in over the past couple years to overcome some of his relative weaknesses to maintain a loving home with his family. And it keeps repeating in my mind...somebody thought of it, and someone believed it... And that's all it took for this guy's positive couples work with his wife to become a crushing experience for him.

Innocence

I had a poignant conversation with a young woman who just started seeing me for psychotherapy. She had a very difficult childhood. Both parents were critical, judgemental and self-absorbed. They were also both alcoholic and were emotionally unavailable, at best. As a teenager, she moved with her mom into the home of her new stepdad who had a teenage daughter and a son with autism. The girls had to share a room and had little in common. These were described as very dark years. I acknowledged how difficult this would have been: to have no parental support while being forced to move into someone else's bedroom who is not fond of you at all and suddenly having to live with an autistic kid on top of it all. "Oh no," she replied, "he just has some issues but he was never mean to me like all the others; we got along." Talking about her autistic stepbrother brought the first smile I saw to the face of this very sad and troubled young woman.

"I'm So OCD...Part 2" (Liz McGarry)

 I recently posted a blog discussing the use of psychological disorders such as OCD, Bipolar Disorder and ADD, as adjectives in everyday life. During the two weeks since I posted that piece, I have witnessed many examples of this phenomenon in action: OCD was used to describe someone who used a lot of hand sanitizer, ADD was used to describe someone who couldn’t focus in the library, and Bipolar was used to describe the weather. When I heard my friends and classmates use these terms, I made sure to ask them to think about why they chose to use them. This has allowed me to engage in many important conversations about what it really means when you say, “I’m so OCD,” and the implications that using these phrases have on those who actually do suffer from the disorder.

 One of the most meaningful conversations that I have had about this issue actually took place about five minutes ago. I was sitting at the desk in my room, messing around on my laptop and brainstorming what I wanted to write for this post. One of my housemates, Anna, (who happens to have OCD) was lounging on my bed, struggling to get through some Spanish homework. I decided to share the topic of my post with her to see if she had any insight to offer. “Oh I hear people say it all the time,” she said casually. “Of course it bugs me. People need to stop saying that they’re having an OCD moment. Sure, you may like things to be a certain way—everyone feels like that at one time or another. For me, it’s different. I don’t just want things to be a certain way, I need them to be. Unless you have OCD, you can’t possibly understand what that means.”

In the middle of this in-depth exchange, another one of my housemates, Jason, walked into the room and we asked for his thoughts on the subject. Unlike Anna, Jason has not experienced a psychological disorder, nor does he have a background in the field of psychology.  

“Well, I definitely eliminated the word ‘retarded’ from my vocabulary, that’s just not right,” he answered quickly. “It’s different with words like Bipolar though. I mean, when I say the weather is Bipolar that’s way more correct. Like, people who are Bipolar have two extremes, so when it’s rainy and then it’s sunny that actually makes sense.”

 Anna pushed Jason a little further. “Don’t you see how they are similar though?” she asked. “You wouldn’t use the word retarded, because you understand that a person with an intellectual disability is more than just a label. How is Bipolar any different?”

“Yeah,” I chimed in, “People with Bipolar disorder aren’t so black and white. They experience a range of complex thoughts and emotions just like everyone else, and it’s unfair to compare their life experience to something as simple as sun and rain.”

Realizing that Anna and I might be coming on a bit too strong, I stopped myself in the middle of my lecture and gave Jason a chance to respond. “You know it’s something I never really thought too much about,” he explained. “People say OCD and Bipolar all the time. I just never really thought that anyone was offended by it. Now that you mention it, I’m definitely going to try to quit the habit.”

Before kicking my friends out of my room (so that I could actually start writing this piece) I asked Anna one final question. Why don’t you ever speak up? If you hear people saying it and it bothers you, why not ask them to stop? What it basically came down to is this: sometimes these things are hard to talk about. Anna doesn’t want to draw attention to her OCD when she doesn’t have to, and sometimes confronting the problem is more awkward and uncomfortable than just letting it slide by. Although I totally understand where she is coming from, I think it would really make a difference if people had more discussions like the one that took place in my room tonight. I believe the issue is not a matter of hate or discrimination; it results from a lack of education and discussion about the issue. Use of the “r” word improved significantly after people started speaking up and a powerful movement was born. Maybe it’s time for a new movement. 

*I changed the names of my friends for this post.

"I'm so OCD..." (Liz McGarry)

The other day I was hanging out with some friends, reminiscing about old high school teachers, when one of my friends blurted out, “Yeah that class was so retarded!” I didn’t say anything to her about it, but it kept bugging me the rest of the afternoon. I hear the “r” word thrown around a lot. It has unfortunately become a part of our daily vernacular, despite campaigns to end its use as an insult. I can’t help but get a little bit uncomfortable when I hear it thrown around so often.

A few hours after the “r” word incident, I was working on my application to study abroad in the spring. (I’m hopefully going to Ireland to study psychology---I can’t wait!) My sister was helping me edit my personal statement, and I kept rearranging the paragraphs over and over. “Sorry I’m being so OCD about this. I just want it to be perfect,” I commented, without even thinking about it. Then suddenly it struck me. Why was it okay for me to refer to myself as OCD, which I frequently do, but totally unacceptable when my friend referred to that “retarded class”?

 This got me thinking about other times when I hear diagnoses used incorrectly. How often do you hear “she’s so ADD” or “the weather is so bipolar today”? It happens more often than you might think. By using these terms in everyday speech, we are minimizing the severity of the conditions, and contributing to stereotypes that can hurt those who actually do suffer from them. Using the terms as an adjective (i.e. “I’m so OCD” instead of “I have OCD”) implies that these conditions are a personality trait, something that can easily be changed or controlled. I find that such distorted perceptions of these disorders sometimes lead people to incorrectly diagnose each other. I frequently have friends come up to me claiming, “Oh so-and-so definitely has Asperger’s, don’t you think?”

For the next two weeks, I plan to keep a journal of all of the times I hear psychological disorders used incorrectly or offensively. I will include things I hear in television or movies, that my friends and family say, and even when they accidentally pop out of my own mouth. Although I am now making a conscious effort to remove terms like “Bipolar” and “OCD” from my everyday vocab, it is something that has been so ingrained into my language that I know it will be a challenge. I will post a new piece two weeks from today, and share what I have learned. My own little pseudo-experiment! I imagine the results will be interesting…