Autism is classified as a pervasive developmental disorder, which is a spectrum; no single definition fits everyone. Someone can be severely, moderately or mildly affected. You don’t have to be Rain Man to have autism spectrum disorder. It comes in all flavors. In fact, if you have a mild case of Asperger’s, say, you might not even know you have it at all.
Autism affects communication and interaction. Speech and friendship, essentially. Here’s a set of definitions, including the official DSM IV criteria.
At this point in his life (nearly 4 years old, spring 2002), Damian does fit the profile of a child with a mild form of autism. His issues don’t make him less connected to us, but they do put roadblocks in his way to normal, comfortable relationships with other children. He has the basic issues and the therapies are helping him, so it’s a good working diagnosis for now.
WHAT KIND OF THERAPY ARE YOU USING? WHAT THE HELL IS FLOOR TIME?
The first time I walked into a speech therapist’s office, she handed me a book. The Child with Special Needs, by Stanley Greenspan and Serena Weider. I was put off by the title but the more I read, the more I liked. It’s more than a book, it’s a complete treatment approach. And it makes so much sense, at least to me.
Greenspan and Weider believe that a kid on the spectrum has trouble connecting not because he lacks interest in people, but because underlying neurological issues get in the way. For example, if I call your name and you don’t answer, you might have auditory processing problems that make it hard to distinguish my voice from the background hum of modern life -- air conditioners, traffic, music on the stereo. If I come home from work and you don’t come running to me but instead get up and wander halfway and then get distracted by a toy, you may have motor planning problems: I’m all the way at the door, several steps away, and you’re not good at getting your body to do what you want, and especially not good at planning and following a sequence. So you start toward me but can't perform the follow-through. It’s not that you don’t care, it’s just that the wires in your head got tangled.
If you can analyze a particular child’s deficits, you can craft a treatment program that’s done in the context of a "floor time" play session, and helps him or her get stronger.
That’s part of the theory. The other part is this: Greenspan says that as a kid develops, he or she passes through six emotional milestones: Self regulation, intimacy, two way communication, complex communication, emotional ideas, and emotional thinking (building bridges between the ideas). That progress gets thrown off course when a kid has a kink in his wiring. Floor Time play can help him get back on course. The heart of the therapy is engaging with a child on his level and gradually raising the bar higher and higher.
I’m here to tell you: it works. It really really works. When we started out, in February 2001, Damian operated somewhere around Milestone Three (communication). As I write this in April 2002, he can go all the way up to Milestone Six, though Greenspan says it’s not complete until your child can stay there in stressful circumstances. Right now Damian can play imaginatively at home but not at school. We still have work to do.
WHAT THERAPIES DOES HE HAVE RIGHT NOW?
Glad you asked. He’s a busy boy, as are most spectrum kids I know.
Damian is in a floor-time based special needs preschool five mornings a week. The directors are senior clinicians with Greenspan’s organization. (It’s a non-public school; the school district pays for it.) It’s across town, a 35 to 40 minute drive (ugh) and classes start at 8 am (double ugh) so you know I must think it’s pretty damned good.
He gets two hours of speech therapy at school (one-on-one, he gets pulled out of class for it), broken up into half hour chunks. His speech therapist often brings in another kid, which is great. More than anything, he needs to learn to be comfortable talking around other kids.
He gets three hours of occupational therapy per week: two half hour sessions at school (also one-on-one), one hour at a clinic and an extra hour we pay privately for with the coolest OT on the planet (also at a clinic).
He gets varying amounts of floor time therapy, anywhere from six to fourteen hours, depending on people’s schedules. Right now he’s getting twelve: six two-hour sessions. Some are after school on the premises; I pick him up at 1 p.m. instead of 11 a.m. I love those days, they give me a little breathing room. Some sessions are at home; the floor timer comes to the house. This felt strange at first but I’ve gotten used to it and so has he. He sometimes checks in with me in the middle of the session but less and less frequently these days, though he’s always happy to see me at the end of the two hours.
Other biomedical therapies? Not really. I strongly believe that this is an area where you have to follow your own instincts as a parent, and mine has always been that this is not where we should spend our energies. Biomedical approaches like the DAN! doctors recommend probably do work brilliantly for some kids, but not necessarily as well for everyone. Damian does get a full regimen of vitamin gummy bears, though. And we discovered that he’s sensitive to salicylates, which are present in a lot of fruit: berries, apples and grapes are the biggest culprits, so we had to switch from apple juice to pear juice. When we cut salicylates out of his diet in April ‘01, it seemed to help him focus, but these days when he has some raspberries he doesn’t zone out, he just has a tummy ache.
We tried the GFCF diet (essentially: no wheat, no dairy) , at least the gluten-free part. We thought we saw improvement, but when we challenged it after two weeks, he didn’t regress, so we went back to bagels and crackers and pancakes.
We also give him baths in epsom salts, which I first read about here. I don’t know that they help -- it has certainly seemed so at times, though we haven’t done any controlled testing the way we did with the GF diet -- but the epsom salts don’t hurt, they’re generally good for clearing toxins, and they don’t cost that much, so we’ve kept with it.
I’m not saying there’s definitely no biomedical component for him, how can we know? We may look into it later if his development stalls, but so far Damian’s making good progress with just floor time and occupational therapy. Rewiring the brain.
list of questions / why this journal / who's who / glossary / links
copyright 2002 Tamar