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…

Social Skills for All! (Kate Altman, M.S.)

Sometimes when I am trying to explain, teach, or role play a social skill or unwritten social rule to a person on the spectrum, I feel stumped.  Social skills and good social behavior can be challenging for all of us!  I consider myself relatively socially-savvy (you would hope so since I've spent a lot of time teaching social skills!), but I have certainly done the wrong thing or put my foot in my mouth on more than one occasion.

Interestingly, I've randomly come across some really nice articles intended for general audience that have great tips for mastering some social rules/etiquette.  This is one from Real Simple magazine about common phrases to avoid in conversation and what to say instead.  For example, they say that you should not tell someone they look tired, but instead should ask them, "Is everything okay?"  And this is a post on a lovely blog called Enjoying the Small Things by the mother of two children, one of whom has Down syndrome.  She breaks down what it means to be a good friend and suggests some ways to be a good friend, such as "really listen" and "remember little details".

Articles like these are helpful, and also a great reminder that we can all benefit from social skills education.

All Aboard! Trains and ASD (Kate Altman, M.S.)

Until I began working with children on the autism spectrum, I did not even know that my city's transit system, Septa, had its own museum.  As child after child told me about this museum through the years, I started to wonder what percentage of its visitors are on the spectrum.  Apparently, a great deal.

According to this New York Times article, children with ASDs' overwhelming interest NYC's New York Transit Museum have prompted the museum staff to create special programs for kids on the spectrum.  Their program, Subway Sleuths for 9- and 10-year-olds, has become so popular that the museum staff have decided to expand it starting in the fall.

Many children with ASD find transportation--particularly trains--fascinating and soothing.  Train, subway and bus schedules and maps are complicated and full of detail, but the trains/subways/buses themselves are (usually) predictable and reassuring.  In my experience, I have found that so many children on the spectrum have a special interest in trains that I often have to explain to people that many individuals with ASD have special interests OTHER than trains.

I think it is wonderful that a community organization like a city transit system is recognizing and embracing its impact on children on the spectrum.  Programs like the NY Transit Museum's excite and inspire kids with ASD, invite them to participate in the community, and build social skills and friendships.

What is your experience? Have you visited a transportation museum (or a museum dedicated to another special interest)?

ASD on TV...and in Books, Comics, Movies, etc. (Kate Altman, M.S.)

In working with children, adolescents, and young adults on the spectrum, I have often integrated representations of ASD in the media throughout the course of therapy.  I quickly found that young clients with ASD often enjoyed and appreciated the exercises.  We used pop culture and the media therapeutically in the following ways:

1.) Education.  When a person who is not a very young child is first diagnosed with an ASD, they may feel confused and overwhelmed by the diagnosis.  What does it mean to have an ASD?  How do people with ASD act?  What might my life be like?  I often direct clients who were recently diagnosed to explore ASD by reading books and poking around on the internet.  I especially like to point them to biographies about individuals on the spectrum, such as Stephen Shore, Temple Grandin, and John Elder Robison, and suggest they look for videos on YouTube made by "real life" people on the spectrum to get a feel for what ASDs are like and generally get the sense that they are not alone.

2.) Self-Esteem. I have asked groups of adolescents to look for books, comics, movies, and TV shows that feature characters who have (or may have) ASD who they think are cool.  They are often excited to discover characters with features like super powers, dry, witty humor, and, courage to whom they can relate and to make the realization that talented writers, directors and illustrators have interest in people on the spectrum.

3.) Self-Advocacy.  Reading about ASD self-advocates like Stephen Shore and Temple Grandin often inspires individuals on the spectrum to think about their own self-advocacy.  The reverse works as well: some of my clients take issue with portrayal of ASD in the media, such as the poorly-written, overly-stereotyped character of Dr. Dixon on NBC's Grey's Anatomy or the Braverman family who have a son with ASD on the NBC show Parenthood.  These portrayals anger some of my clients and help to inspire them to want to correct misrepresentations of ASD in the "neurotypical" community through self-advocacy.

4.) Humor.  Typically, young people on the spectrum spend a lot of time in therapy.  So I think it is important that some of that time actually be fun and enjoyable.  And humor helps build rapport between therapist and client as well as between group members in ASD therapy groups.  Characters like Abed on Community and Sheldon from The Big Bang Theory are clever and hilarious, and it is fun for individuals on the spectrum to see ASD characteristics portrayed in a positive and lighthearted manner.

What are your thoughts about ASD in the media and pop culture?  Do you find it inspiring? Entertaining? Offensive? A combination of all three?