Monday, May 29, 2006

Therapy for Autism (longish)

Time Magazine's May 15, 2006 issue's cover story is on Autism.

We don't subscribe to Time, but I got a copy from Connor's Uncle Otha. This article discusses a few different therapies for working with children with autism.

First off, it explains it's more a spectrum of disability, kind of like cancer. There are all different kinds of cancer, and different severities. Same with autism. Trevor's form, Asperger's Syndrome, wasn't even recognized as a disability for a long time. This type of autism is often called "little Einstein" because the kids are really knowledgeable about their favorite topic. Thomas Edison probably had Asperger's Syndrome.

Although he is very verbal, and has a huge vocabulary, the autism comes in more physical and social ways for Trevor. He is hypersensitive to touch - no tags or seams in his shirts, the waistband of any clothes needs to be loose to the point of about to fall off. He was wearing his pants extra low since he was 3 - long before the fad (stroke of luck that everyone else started doing that!). On the social side, Trevor's tone of voice and how loudly he speaks are often at odds with his actual message. He tends to see most comments made to him as some kind of attack, and reacts in kind. Due to this, people need to know ahead of time he is not intentionally trying to piss them off. I meet with his teachers every year before school starts and keep up weekly emails to make sure he's doing okay in school. But still, at the end of the day, he's okay. He's able to make himself understood, and he can get through school with a minimum of assistance for a kid with a disability. Most of his peers don't even know he has one - in fact, a kid in German class told Diana he was bummed Trevor didn't apply for the exchange program.

Connor is a completely different story. He is the type of kid discussed in the article. Connor's autism is called Language-delayed, or Kanner's Syndrome (Kanner first diagnosed autism and it's traits). Connor's autism was not apparent at first. He seemed to be developing pretty normally, except he didn't talk much. At age two (shortly after his vaccinations), he stopped talking altogether. The few words he'd learned went away and he became more withdrawn.

I still don't remember how I even learned of it, but our Education Services District had an Early Intervention program (age 3 to 5), and I was invited to bring Connor to "Tot Class" when he was still two years old. We'd go a couple of times a week, and he would be prompted to ask for drinks and food at a little snack time. The therapist would play on the floor with him and try to engage him. Looking back, that was using ABA therapy, as well as Floortime - two strategies discussed in the Time article. There wasn't a whole lot of improvement in Connor, and although he did get a little more engaged with the therapist, he never did really talk or try to play with the other child in the room.

After he got too old for Tot Class, I was told he could be evaluated for Early Intervention. This was more like school in that there were routines, he'd ride the bus, and go without me. At the evaluation meeting, I learned not only was Connor Language-delayed autistic, but through comparing his behavior with Trevor, Trevor was probably autistic too! So this was a real double-whammy. But it certainly explained to me the difficulties we had with both boys.

Connor was put on an IFSP (individual family service plan) and Trevor was evaluated by his behavior therapist (since he was having social trouble) and put on an IEP (individualized education plan). Also, Trevor had been kind of a quirky kid, and at 5th grade, the kids were given free hepatitis shots. His social difficulties got a lot stronger after that. We don't vaccinate our boys anymore. Diana has 2 X chromosomes, and she's not affected by the vaccinations. The article doesn't mention this, but there are 4x as many boys as girls with autism. The genetic side of the problem seems to be on the missing leg of the Y chromosome. Both parents need to have the defect for the daughter to be autistic. Also, having the defect won't mean autism automatically - environmental factors (vaccinations, pollution, ???) play a role in autism as well.

I have been to 2 weekend-long conferences on ABA therapy - Applied Behavioral Analysis. The article says this has been around for 20 years. With the upsurge in cases of autism, ABA has become more available - although there are not nearly enough therapists. Because of this, they can charge an arm & a leg to help your kid. I went to the these conferences to learn enough to do therapy with Connor on my own. ABA is based on B.F. Skinner's work with reinforcing behavior. ABA only uses positive reinforcements. You set a task, the child does the task, they get a reinforcer - in Connor's case - Skittles, a tickle, "Good Job!" etc.

I like ABA because the first thing you do is find out the skills the child has or doesn't have. Through observation and testing, you can map out the areas that are deficient, and work to build those up. The model I'm using is set up to get kids to first grade - because once they have the skills of a typical First Grader, they should be able to go from there on their own. The skills are everything from receptive language to toiletting (Connor wore Pull-Ups until age 6).

Once I came back from the conferences, I let the rest of the family know the strategies to work with Connor as much as we could at home. He goes to a regular school, and he is now having his assistant faded for most of the day (she used to be with him the whole time). He starts the day by going to breakfast & then recess on his own, and gets himself to class. This is a far cry from having to wear an orange vest since he was a flight risk when he first started school. Connor is now using more full sentences, vs. two or three-word phases. He has learned to use "I" instead of using his name when talking to others. "I want pancakes" rather than "Connor want pancakes."

This summer I plan to use going swimming as the motivator to have Connor work intensely with me through a book called "Teach Me Language." I'll post more on that later. If you get a chance to read the Time article, it's pretty accurate.


keeka said...

Cool, I bet Connor will do great!
He seems more attentive even the last time we visited you.

Lee said...

Connor is very good at communicating his needs. However not his pain.
If he is sad or upset it becomes very difficult to understand What happend. This can be a real heartbreaker.

Also, do to his physical toughness we have to look for his scrapes and bruises to make sure he is okay.