If you could go back in time for Spaz, what do you think should have been done to better his outcome (in any and all areas you care to comment on).
Wow. That’s so tough, but I think it’s important for any parents who do have children with severe autism and behavior problems. It’s important to realize that back in 1985, when Spaz was born, no one knew much about autism, let alone interventions and services. So just being born later will improve the prognosis for most kids. Spaz was born 12 weeks premature, so he’s actually lucky just to be alive. Even 30 years ago, that may not have been the case.
First off, I’ll say there is no substitute for diligence as a parent. What I mean by that, is holding firm to behavioral expectations like a dog on to a bone. I’m drawing from my own experience as a parent here, and therapies come and go but parental consistency is the one thing that stays the same. Hopefully. Jane and I were hyper vigilant early on, and this paid off as Thomas grew older. And this leads to a second thing: you can not do it alone. Jane does an excellent job and takes the bulk of the credit but I’m in there as well. It helped being in the field and actually trying out some interventions that I was learning about, like floortime, discrete trial, pivotal response training, ABA, augmentative communication, PECS and video modeling.
If I had to recommend one publication for parents who are seeking peer-reviewed literature on Autism, it would be Focus on Autism and other Developmental Disabilities. This is a journal but it has stuff that an everyday parent would find interesting. Jane would get it before me, and read the entire thing before she’d let me have it. The Journal of Applied Behavior Analysis is okay, but it quite technical and not specific to disabilities and autism. The Journal of Positive Behavior Interventions is another journal of practical interest, especially for teachers.
The reason why I recommend knowing the literature is because the temptation towards fads in inescapable. So many people are out to cash in on the epidemic, that if you have little to on knowledge, you’ll become just another proof of PT Barnum’s maxim.
Jackie mentioned in her comment that her son has many of the behaviors Spaz has. Keep in mind, Spaz has actually improved and matured since I got him 6 years ago. I went to work on his most serious behaviors, which were hitting, kicking and scratching the crap out of all of us. Almost all of that aggression is gone, now. Now we’re working on the spitting, self-gagging, biting stuff and potty training. We still have a long way to go, but one has to understand how far we’ve come. So if a child of 8 years is where Spaz is now at 21, there’s time for making even more improvement. Sort the behaviors from the most severe, and work on them accordingly. Be aware that new behaviors can and will probably pop up and have to be dealt with.
Boys and masturbation: I’m not quite ready to go there, but it is something to look forward to into the teenage years! Spaz’s wiring seems to have spared him this ultimate of self-stim behaviors or maybe it just hasn’t hit yet.
One thing that really helped Spaz and Thomas was being around peers. Not necessarily non-disabled peers, but peers who were a bit higher functioning that were social. It’s when Spaz got interested in making friends that he really made strides with the aggression. It was the same for Thomas and the potty training. Once he got around classmates who were all potty trained, that was it for him.
Spaz has had access to all sorts of therapies including OT, PT and speech. His mother really has done well taking him out, enrolling him in activities and making his life as full as can be. But he still has a tendency to tear the house apart.
It’s hard to say what I would do with a younger Spaz. Sometimes I think I should have went after the potty training more aggressively myself earlier on, but I was still acquiring knowledge myself. I did the best I could with the physical and mental resources that I had. And really, that’s all any parent or teacher can do. It’s interesting to think about what we might do differently, and I hope I’m doing things better nowadays. That’s why I prefer looking forward to looking back. I know I made mistakes back there and that’s where I’d prefer to leave them, while carrying the lessons forward.