Wednesday, April 18, 2007

Credit Where Credit is Due

Anyone who has dwelt upon the various talking points of the ongoing debate between what I will loosely refer to as "cure" vs. "acceptance" philosophies has come across this one:
How does one know when a particular treatment/intervention is working?
The short answer, so as not to keep you in suspense, is: One doesn't.

The issue, taken in its entirety, is far more complex than the short answer implies.

Before proceeding, a definition of "treatment" would be beneficial. For the purpose of this discussion: ABA, IBI, IVIg, Sensory Integration, Secretin, Music Therapy, ALA, Hippotherapy, Floor Time, RDI, Chelation, Auditory Integration Therapy, Seroquel, SLT, GFCF diet, Lupron, OT, etc, etc, etc...
All of the above listed treatments were conceived of to reduce/moderate/eliminate behaviors associated with Autism Disorder ( a questionable goal, but that is a topic for another post). Needless to say, some are far more dangerous and invasive than others, and some far more adequately researched than others as well.

There are numerous obstacles to knowing which, if any, of these treatments are effective in achieving their desired results. Among these are the Placebo Effect (applied to observers as well as subjects) and the distortion produced by applying numerous treatments simultaneously, which is most often the case. The logical and scientific analyses embodied by these effects are legitimate, but they completely overlook the really important issue: How will a person change and develop over time in the complete absence of "named" treatments? Or, to put it another way, does a good ol' dose of understanding, love, dignity, and familial "safe-harbor" help an autistic individual to achieve all, and more, than the named treatments can?
And this is where we arrive at the point of the discussion. Let's give credit where credit is due.
And I would submit that credit is due to the autistic person him/herself. They are the ones who hold the ultimate responsibility for their outcome. It is through their own efforts that they succeed in becoming the people that they want to be! It may come as a surprise to many parents that autistic kids, just like neurotypical kids, progress through various stages of development - each one with its own set of benefits and detriments. Its called growing up. And "treatment" is not required for a child to grow up.
There are many parents out there who continually trumpet their efforts as being the catalyst for their child's success. One mom recently, in an incredibly vainglorious display, posted a video showing her son's "episode" at the local DAN! doc's office receiving IV chelation. Regardless of what one believes of the efficacy of chelation therapy, consider the point that her cheerful, inquisitive, friendly, autistic son's changing behaviors were being attributed, in his mother's eyes, to the intravenous drip from a plastic bag - not to the boy himself. And therein lies the fallacy. It seems to be very difficult for some people to ascribe positive behavioral changes in an autistic person to the person themself, and not some external factor. Furthermore, many parents claim too much credit for their role in "recovering" their child.
This discussion is not intended to imply that the actions of parents are not meaningful, that the duties of parents are not significant. It would require a fool to believe that autistic children need any less guidance or support than neurotypical ones. And I will be the first to admit that, in many cases, a higher degree of commitment is required to guide our autistic kids through the complexities they will encounter at all stages of development.
In my family, we have selected a modified version of ABA, speech therapy, and some OT to help our son gain important skills. But ultimately, he is the one who has to actually do the work.
My point is solely this: Let's give credit where credit is due - to the kids, adolescents, young adults, and adults themselves. Not to the aforementioned treatments, which can only serve to assist the natural, human processes that will take place regardless of what neurological conditions prevail.


VAB said...

Well said. What is more, if we assume that at least part of the increase in ASD diagnosis is due to different criteria being applied rather than an actual change in incidence, and we then look at the difference in childhood incidence and adult incidence, then we have to conclude that, in the past, many kids who would have qualified for an ASD diagnosis grew up into adults who do not find ASD to be so much of a problem that they seek a diagnosis. Humans are very flexible and adaptive creatures and many of us who are wired slightly differently from our peers can, if we so choose and if we have the right support, learn to function just fine as we grow up.

Steve D said...

That dovetails nicely from what I was saying, vab. More indication that change happens in everybody, no matter what is occurring externally.
By the way, you are my first commenter - ever. So you win ... well, nothing. Except my undying gratitude.

Ms. Clark said...

wooohooo!!! Nice blog you got here. :-)

I think most people remembering being a kid and how hard it was to learn to do something... ride a bike, read, write, do math. The parents helped in some way, but when the rubber meets the road, it's the kid who does the work, even if he can't ever learn to ride a bike, he might try, try, try and that's his effort, not the parents'.

I don't want my mom taking credit for what I did in school, except in an indirect way, and her mom shouldn't have taken credit for what my mom accomplished...

Thank goodness, no one is placing credit on an IV drip for my accomplishments or my kids...

mcewen said...

Welcome to the 'c' hub, and yes, lets all give credit where it is so rarely [or at least not often enough] due.

mumkeepingsane said...

Hello. Nice to see a new blog on the block.

It's so nice to see something put into words (eloquently I might add)that I've always thought. My son is the one growing up. He's the one who works every day to gain skills. He's also maturing just as any child does as they chronologically advance in age.

We've really only stuck with OT and Speech and Language Therapy along with a good dose of kindergarten with an educational assistant. He learns so much when he's just living his life like the rest of us. And I must say he's doing a bang up job.

notmercury said...

Hey Steve,
About time you started blogging :=)

Can't wait to read all of your great thoughts.

Steve D said...

Thank you all for your nice comments, and the warm welcome to the blogosphere.