I was recently talking with a teacher who was thinking about going back for her Ph.D. She is also doing social skills training for various groups of students who are on the autistic spectrum. She is an excellent teacher and has a lot of good ideas and techniques. I have no doubt that she will excel if she decides to get into the PhD program.
The thing is, is that when she pursues her advanced degree it’s almost a marketing thing for her social skills classes. That part bothers me just a bit. I’ve written extensively about how so many services and service providers are getting fat off of dollars from families who have disabilities. It isn’t just autism, but autism currently is the most lucrative gravy train at the moment. This might be followed closely by ADHD and learning disabilities.
So if one were legitimately trying to help the autism community, just what would their service or product look like? What sort of model would best serve parents of young children with autism or any other disability? If it were me peddling goods, and I was more interested in helping people than getting filthy rich, what would I do and how would I do it?
First, let’s look at the way it is done now. Basically a parent gets the sad news from a pediatrician or neurologist that their child has some form of autism. Once that happens, the search is on to find the cause and the cure. And there is no shortage of people peddling both at the same time. The people with their hands deepest in a parent’s pocket is going to claim some sort of advanced expertise, knowledge and skill out of reach of anyone else. Their treatment is going to be highly specialized in some way. And they are going to tell you that you are a bad parent for not at least trying it. So you start forking over money. Lots of it. Obscene amounts, sometimes, all for the sake of your child. I mean, it’s your child! $50 an hour will look like a bargain compared to what some of these people charge. In the “get all your money” model, a parent will be subjected to an infinite number of “treatments” which are on a regular basis, usually once or twice a week. Afterall, we know there isn’t any shortcuts. These things take time, which is why it is best to start as early as possible! By the time a parent gets through, they are bitter, broke, skeptical, angry and still stuck with autism. Meanwhile, the service peddler has moved on to other victim/clients. It does not mater what the treatment is. I don’t care if you are just writing a book, you are still cashing in.
I’m not saying a person should not be paid for their time. I believe a person with a great idea should be rewarded. There’s a lot of folks with bad ideas getting rewarded, so paying people who are competent shouldn’t be too objectionable. But any service worth anything needs to be as accessible to as many who need it as possible. and it’s possible to make a living at it, but not necessarily getting filthy rich. I’d much rather live modestly and know I lived righteously than to be filthy rich and know that I cheated massive amounts from the people least able to afford it.
Social skills, ABA, OT, speech and homeopathic medicine: these are the hottest things going for individuals with autism right now. The most educationally and morally sound approach should involve some form of parent education in order that the parent can provide and continue the therapy on their own without the therapist having to be there. That means that the parent should be present for each and every therapy session and learn to do what the SLP, OT or behaviorist is doing. This does not mean the parent becomes those things, except to the extent that it applies to his/her own child. Parent education is one of the most efficacious and empirically supported interventions when it comes to students and children with behavioral difficulties. There is no reason why this shouldn’t apply to other interventions, as well. A parent should be able to be trained sufficiently to provide the services needed for their own child, including some medical ones. The idea is to make the family as independent as possible, and to make meaningful support available when needed. The running around to clinics and treatment centers serves to further isolate and differentiate families affected by disabilities from those of more typical family dynamics (whatever that may be).
And this is what I told my teacher friend. If she wants genuine legitimacy in my eyes, she would include a parent training and follow-up component to her social skills program so that the good she does can live on long after she retires or moves to a more upscale location.
Many parents have the resources to pay for someone else to provide services to their children. They can afford to hire the nannies, experts and providers and if they have the means than I say go for it. But not every family with a disabled child is financially secure. They are all too willing to fork over money that they don’t have in order to obtain help. This is where teaching them to help themselves can pay greater dividends and improve the well-being of everyone in the family, not just treat the one with the disability while bankrupting the parents. Show the parents how to do it and tell them, “I’ll show you how to do it. Once you learn, I’m available for consulting. Or you can pay me to do it if you don’t want to do it yourself.” At least you aren’t holding them over the barrel by claiming that only you have the answer and that their child will suffer needlessly if you aren’t making the big bucks to serve him/her.
I’m all for capitalism, but only when it is done responsibly and with some sense of not harming others for personal gain.