Noise-Part 2

There are a lot of subcultures in American society, and when Buddy Boy was diagnosed as being on the spectrum, I immediately became aware of this subculture, which had it's own abreviations (ASD, IEP, FAPE, IDEA, FBA, LRE), language with specialized meaning (inclusion, para's, advocates, facilitated communication), and organized groups (ASA, DAN, FEAT).

The other thing I immediately noticed were the plethora of different treatments that were espoused as being either helpful or necessary.

Having been trained in the scientific method (I am a physician), I was very interested in the physiologic basis of how these treatments worked, and what scientific proof there was of there efficacy. Behavioral therapy, communication strategies, diet modification, supplements, chelation, etc., etc., etc. My head reeled with all the things that I could be doing. Unfortunately, the more and more I looked at it, the more empty it all seemed. Sure, ABA has a couple of studies that support it, and some things (like diet modification) have so little downside that trying them might be worthwhile. But the majority of interventions seemed to be just so much noise. All of us have precious little money to spend on interventions (after spending money on evaluations, OT's, PT's, advocates, doctors, etc.).

So why do so many people seem enamored of so many interventions that are probably not even useful, and may be harmful? Kristina Chew, Ph.D., over on Autism Vox talks today about "flocking". This indeed may be important in this phenomenon, but I have a slightly different take on this. Personally, I think it is a combination of the decline of science education combined with magical thinking. For a good discussion of magical thinking, see this.

Over the last few decades the number of college graduates obtaining degrees in science subjects has declined in America, Canada, and Great Britain. This article briefly talks about the impact on the US economy, but I think there is also a tangible effect on how we as a society view many things in the world. Unless one has some basic grounding in statistics and has some facility in critically reading scientific papers, the difference between causality and correlation disappear, and anecdotal evidence is viewed as equivalent with controlled studies.

And if you have no way of differentiating between junk science and real science, then it all becomes just a lot of noise. And noise and autism don't go together very well.

Noise-Part 1

Of the many different definitions of noise, two leap out at me as directly applying to autism. One is "acoustic noise", which can be defined as meaningless sound of greater than usual volume. The second is what I term "informational noise", or meaningless information that obscures true data.

As this is only my second blogging post, I'm going to deal with the first definition today. I'll save dealing with the second for another time.

The way Buddy Boy reacts to acoustical noise in his environment has always fascinated me. On the one hand, he is quite sensitive to many loud (and only mildly loud) sounds. The first time we took him to a circus we had quite a time of it (hands over ears, screaming, etc.). It was obvious that he was physically in pain. This same reaction has been repeated several times in many different settings, though over the last year or so it has not been as bad. We don't purposely take him to loud places (I may be a bad parent, but I wouldn't purposely torture my son), but he will want to go somewhere, we will warn him that it will be loud, he'll insist on going, then want to leave immediately.

At the same time, though, there seems the innate ability to overcome/adapt/deal with acoustic noise if the stakes are high enough. For example, the lure of a McDonald's Happy Meal with it's enclosed toy is enough for Buddy Boy to want to go to the children's play area there (even though it sometimes has noise levels that hurt my aging ears). Another example is a kids play place in our area that has tubes to crawl through, food, and bunches of games for kids to play that pay out "tickets" (For Americans, think Chuckie Cheese on steroids). This place has noise levels that rival standing behind a 747 on a runway before takeoff. Yet I constantly get badgered by Buddy Boy to go there, as he is fixated on collecting the tickets. Not because he wants to trade them in for trinkets at the desk on the way out, but because he is obsessed with the tickets themselves. He's happy spending hours in there. We always need a strong motivator to get him to leave this place without creating a big scene.

What is it that enables Buddy Boy to sometimes put up with horrendous amounts of noise at one time, yet to be in physical pain from lesser amounts of noise at others?

There must be a research study in there somewhere.

Introduction

CLUB- 1) A group of people united by a common interest or goal. 2) An association to promote good fellowship or social intercourse.

The most quoted estimate of the incidence of autism spectrum disorders is 1 in 166.

My name is Joe. I live with my family in an inner ring suburb of a mid-sized Midwestern City in the U.S. I officially joined the "Families Directly Affected by Autism" club in October of 2004, when our son was diagnosed with PDD-NOS, a type of autism spectrum disorder (ASD). My wife Liz and I had actually joined it when our son was born in 2000, we just didn't realize it at the time.

Our son, who I'll refer to as "Buddy Boy" as that's what I often call him, exhibited many of the typical signs of autism as he grew. He didn't have any words at all at 24 months. Which isn't to say that he was unable to communicate. He "spoke" sentences with one syllable: Dih. "Dih dih dih dih dihdihdihdihdih". He repeated it as many times as necessary, raising and lowering the pitch, until he got his point across. He also spun a lot, flapped his hands, and played atypically with his toys (for example, taking things apart and building other things, which weren't necessarily recognizable as anything in particular, with the parts). He was also generally affectionate with us, and had an explosion of language from 28-36 months.

Buddy Boy received speech therapy and Occupational Therapy for what we were told was Sensory Integration Disorder. When his language took off I remember thinking "At least he doesn't have autism". I have felt somewhat guilty about thinking that ever since, as I have discovered that dealing with autism isn't the terrible burden I imagined it would be, and having autism definitely doesn't mean that one is destined to have an unfulfilled life.

Buddy Boy has a sister, Sweet Pea, who is 4 1/2 years old, and other than being a little hyper, is totally neurotypical.

I think the opening line of Dickens' "A Tale of Two Cities" best explains what it's like to raise a child with autism-"It was the best of times, it was the worst of times". Many people see some of the outward signs of autism-lack of or atypical verbal communication, screaming or tantrums with sensory overload, general lack of eye contact, etc.-and either pity you that your life must be miserable, or give you the evil eye like you're a terrible parent that can't discipline your child. They almost never see the connections that you do make with your child, enjoy some of the great (and funny) things they create, or appreciate that you have most of the "normal" joys and sorrows that come with parenting any child.

Although dealing with ignorant attitudes in public can be somewhat troubling, our greatest trials have come with dealing with the school system. Buddy Boy is very intelligent, and can go on for great lengths of time expounding on such things as volcanoes or what components make up a water treatment plant (when he drew a diagram of a plant and identified one layer in a sedimentary pool as alum I had to look it up to check it out-he was right). He also clears his throat and grunts a lot (an involuntary tic that has been described in school records as making "rude sounds"), also has ADHD (which makes him butt into conversations a lot and try to monopolize them), and tends to perseverate over, and fixate on, small details (for instance he'll decide that he needs to study dust mites, so he'll start collecting loads of dust and won't let us throw it away). He also can be somewhat confrontational (usually verbally, but at times physically) when he doesn't get his way. Some of Buddy Boy's teachers and school administrators have identified him as non-compliant, and have worked actively to get him thrown out of school, rather than actively working to keep him included.

Many of the blogs regarding raising kids on the autism spectrum are written by women. A few are written by men. Many of both are excellent, and I've followed many as they also walk this same path that we do. I've decided to add one more blog to the estimated 60 million other blogs out there. Even if no one else reads this, I know it will make me feel better to get some of my thoughts out there, and I think it's helpful to have another male perspective on the subject.

So pull up a seat and sit a while. I don't plan on publishing something daily. More like once or twice a week. I also haven't figured out how to do the RSS feed thing, or even how to attach pictures yet. Perhaps in time I'll have a snazzy look to the place. Until then, this is it. Like a good movie, the story will have to carry me. It certainly won't be my writing or presentation skills.