the R-Word

As a parent of someone with special needs, I always have some trouble with the use of the word retard or retarded, regardless of the context. My friends know this and avoid use of the word.
The Special Olympics has launched a campaign to eliminate the use of the word. I encourage everyone to pledge on their website: R-word.org.

The R-word

As a parent of an autistic boy, I've always been sensitive to the use of the word "retard" regardless of context. With the recent brouhaha regarding President Obama's reference to the Special Olympics, there has been increased attention to the Special Olympics, and particularly their campaign to eliminate the use of the "R-word". Here's the article from CNN, and the web site of the Special Olympics where you can pledge to stop using the word.

Man, Jenny McCarthy drives me nuts...

and not like she used to back in 1995.

I'm at the point now that I think she's doing a disservice to the autism community. Yesterday she was on CNN with three doctors for debate regarding vaccines and autism. (For those of you don't know, yesterday was World Autism Awareness Day. April is Autism Awareness Month.) While three doctors were calmly debating the relationship between vaccines and autism, she was freaking out, interrupting and talking about how vaccines contain mercury, aluminum, and ( I'm not sure about this one) antifreeze. She railed about when her son died. When Larry King questioned her about this, she said it was only for two minutes. (I guess her son has something in common now with Nikki Sixx and Dave Mustaine.) I think her main point is the following (slightly related to, but ten years than, the accompanying picture):

"In 1983, the vaccine schedule was 10. Ten vaccines given. Now, today, there are 36, and a lot of people don't know that. I do not believe that vaccines are the sole cause for autism. I do believe they are a trigger. There's something in the immune system that is weakened in these kids, they maybe can't process the vaccines. I don't think it's solely the vaccines. I think there's toxins in the environment, pesticides. It's kind of like a pile-up. If you can fill up a bucket of all this stuff going on with these kids, if they have a weak immune system, all that crap is going to overflow."

The main reason why she drives me crazy and I think she's doing a disservice is that she's pushing parents in a direction that leads them to pointing fingers rather than working with their children. I fear that her writings about how she cured autism to lead parents to scouring the Internet for the secret cure rather than spending time with their kids. I've seen too many parents get caught up on a diet which will supposedly cure autism but really only results in a child not eating what is put in front of them. If there was really a cure for autism, it wouldn’t be a pharmaceutical industry trade secret. It would be out there and available.

Second, I think Jenny McCarthy lacks a fundamental understanding the economics involved with making decisions. I'm not talking about the economics of the health-care industry and budgets and the like, but rather about the fact that every decision requires us to trade off costs and benefits. Although vaccines may be related to the increased incidence of autism, eliminating vaccines is not the alternative. While forgoing an MMR vaccination has the potential benefit of reducing the likelihood of the onset of autism, it also increases the likelihood of contracting mumps, measles, rubella (all of which can be fatal in small children). In turn, it increases the risk of an outbreak of these diseases.

That said, maybe Jenny McCarthy does understand these trade-offs and she did say in her CNN interview that she would rather her son have mumps and autism. I think this is kind of a crazy statement: I don't think I'd be capable of making any type a decision like that.

I think this autism debate just highlights another place in which individuals need understand some basic economics with regard to the fact that every decision we make, be it buying a house or deciding whether or not to vaccinate our children, involves trade-offs. Some of these trade-offs affect a small group of people; others that can affect a large group of people (as in the choice to forgo vaccines and risk an outbreak).

Note: My fundamental feeling on the issue is that there is a genetic component which determines your sensitivity to various compounds and chemicals, some of which are included in vaccines, some of which are included environment. Vaccines interact with these inherited sensitivities and sometimes results in the onset of autism. I don't mean to make light of the issue or the struggle that the parents of an autistic child face. I just think it's important to keep these trade-offs in mind.

Diagnosing Autism

Here's an interesting article from CNN, mainly for parents needing help getting a proper diagnosis of their children with respect to autistic behavior. I think the article is good, but worry sometime about the potential for over-reaction. In some sense, I worry the article makes it easy for parents to see "autism" as a label to explain certain behaviors that could be attributable to other causes.

Reading this article made me think of some other incidents I've experienced when autism makes the popular press:

1. When The Curious Incident About the Dog in the Night came out, everyone recommended it to me. Some even asked if my son was like the kid in the book. I never read the book. At the time I was reading a lot of books for parents and clinical work on autism and therapy techniques. I couldn't handle reading about autism for fun. (Some people actually recommended it to me as a "fun read" since I had a son with autism.)
2. Jenny McCarthy's book about her son is (from what I've been told) a quick and easy read. However, most parents who read the book then spend lots of time looking at various diets and other "non-traditional" approaches to treatment. While these are potential sources of benefits, my experience has been that the benefits from these are (for most individuals) on the margin of the greater benefits obtained through one-on-one therapy and interactions. My worry with this kind of book is that it suggests a "cure" for autism which may distract parents form the daily needs and regular therapy an autistic child requires. I think its important to remember that Jenny McCarthy has a lot of resources (i.e., money) which permitted her to give her son 24 hour support. Most parents don't have this and so must be perhaps more organized with their time in caring for their child. I know too many parents who have spend literally hours per day looking on the internet for the miracle diet or the silver-bullet of vitamins. This time probably could have been better spent with the child or taking care of oneself.
   

Why don't people dance at jazz shows?

Lately, my son and I have been taking in a local jazz jam on Saturday afternoons. I've gone a few times to this jam and played. When I’m there with my son, he and I hang out together, orders some fries, and dance. He loves music and part of the way he shows that is by dancing. When he really likes the music, it's often hard to get a stop dancing.

Many of the musicians at this jam are friends who know my son. My son is eight years old and has autism. I don't try to hide anything about his condition, nor have ever felt embarrassed about his behavior. Most of the musicians love it when my son is there and are excited to see him dancing. He dances and stops and watches them play. Some of them play right to him, as if playing their solo just for him. Many of them say it's the best kind of feedback that you get from an audience member. Some people at the jam (who I don't know) have come up to me and said how happy my son looks and how much they enjoy seeing my son and I out taking in some music. It's often easy when you have a child with special needs to come up with reasons to stay out of the public eye and keep your child close. Our trips to the jazz jam are part father-and-son excursion and part therapy for my son where he interacts socially.

The interesting thing is how many people seem to enjoy seeing my son and I dancing, but don't get up and dance themselves. In Miles Davis's autobiography (which I read a long time ago) he mentions that people used to dance all the time at bebop shows. He asks why people don't dance at contemporary jazz shows. I guess part of it has to do with critical mass (a father and son dancing isn't enough to get the ball rolling and make dancing seem appropriate in the moment). But I also think part of it has to do with nature in which jazz is viewed, as almost a bookish art form to be studied and maybe admired, but not involved with in a casual matter. (The same thing could probably be said of classical music. When was last time he saw somebody dance at the symphony?)

With that, here are two video clips of some of my favorite dancing.

Normality

Being a parent of a child with autism, I'm used to certain manner in which we (i.e., my son and I) do things. For example, restaurant dining usually involves getting up and wandering around with my son, singing songs of the table, and having conversations in which I talk to and answer for my son. To other patrons this probably looks a bit odd. (In my experience servers and patrons are very understanding and make all sorts of accommodations for us.)

This last week we went out for fries after an afternoon of hiking. We went to a restaurant we'd been to before and as before, arrived there about 3 p.m. The restaurant is usually empty around this time (save for a few people there for coffee) but on this visit there were several people eating, including a mom with her two children. We went about our usual routine but I couldn't help but notice how the other family talked, ate, and behaved. I didn’t feel any jealousy, self-pity, or frustration. (At one time, when my son was first diagnosed, these were the only emotions I felt). I just kind of realized that, at least for the last while, I had forgotten how a "typical" kid does things, and hence how a typical parent and child interact and do things like eat at a restaurant.

We typically measure what is normal relative to a benchmark. A large literature in behavioral economics (e.g., prospect theory, the theory of mental accounting, and insights from research on subjective well-being) has demonstrated this time and time again. I guess this is part of the reason why children without special needs are referred to as "typical" rather than "normal". Our dining experience made me recognize (again) how important interacting with others, observing the world, and taking advantage of the opportunities social interactions present are in working with my child. By observing these things and taking advantage of these opportunities, I have a reference of what is typical. This helps me challenge and push my son to behaving "typically" and being more independent. Having challenges in one's life (e.g., an autistic child) can naturally breed a sense of isolation and motivate behavior that separates you from others. Not only is this bad to the well-being of a caregiver, but it can be bad for the therapy design and well-being of a child.