A Word About Therapy Bashing
So what if ABA isn't the be-all-end-all? So what if the diet didn't help? So what if kids still have issues after recovery? We have come a long way, baby. We should be celebrating the fact that there are effective treatments out there to get these kids this far,regardless of what still isn't "fixed". Just think about what we used to do with kids that had Autism. Institution city! There continues to be no magic bullet, but fabulous treatments that get better and better each year. Each kid has their own unique "special blend of ASD". This requires their own unique "special blend" of therapies. It just doesn't matter what it is called, who it worked for, or who it DIDN'T work for.
"Special blend" of therapy? What is that? There are definitions galore for ABA. Diets - tons of variations. Practioners? Therapists? Tutors? Teachers? How about their experience, own philosophy, training? How could we EVER make a blanket statement about a certain therapy option? It's like saying "all cancer medications don't work". Or, "all lawyers are really great". Stuff like that.
Recovery is a fairly new concept. Dramatic improvement is a fairly new concept as well. Therapy bashing really comes into play when people discuss recovery. The recent technology that addresses social issues which in turn "finish" a child isn't widely known. Therefore, older kids that didn't get this new technology are at risk. They may eventually "fall down" by 3rd grade with metacognition or later. The technology I'm referring to is called Theory Of Mind, as well as executive functioning and abstract thinking programming. It's usually delivered "embedded in play" style, and it's part of ABA. Uta Frith is the "father" of theory of mind, and Simon Baron Cohen wrote the groundbreaking essay called "Mindblindness". His curriculum, "Teaching Children With Autism To Mindread" is what ABA therapists that have had training in theory of mind often use to design a program for a child.
Theory of Mind is the "root" of autism. It's the lack of a natural ability to read other people's emotional states; taking others' perspectives, see motive, intent,desire, etc in others. We all learn this naturally and can keep learning and generalize as we get older. Unless you teach a child "how to learn" they will have to be taught year after year how to "be" that age. The child can "look good" for only so long until the other kids catch on.
With theory of mind programming, delivered via NET (natural environment training) ABA or RDI, or something else, children can learn from their environment, enjoy emotional reciprocity and enriched relationships with others. Luckily for us, my child reached the stage AND was blessed to have experienced professionals that understood how to finish him out.
Leo will always learn differently, since their is no cure for his neurological make-up. However, children can achieve normal function even though they are wired differently. I do not think my son will not "fall down" at a later date. He's in 4th grade as I update this, and doing very well. No falling down yet. However, I have full confidence my son will have teen angst, bouts of anxiety, self-doubt, and other "normal" problems because he is a child.
Here in CT only 4 people I know of are proficient in these particular programs that are a part of ABA. People think of ABA and think of discrete trial. This is only a portion of ABA. RDI, VBA, and other philosophies now have programs that can tackle this very sophisticated issue of socialization. I know personally a few children that are older and indeed have no issues because they were lucky enough to have access to this programming. Others that didn't get this have indeed suffered from ridicule and
continue to not fit in. They will never catch on. It's the definition of the disability. After all, being human is complicated.
TO: Shafer Report, Letter to the Editor
RE: Letters regarding the NY Times articles, and future efforts by their
I am very concerned about the attempts at discrediting various interventions by the press, and most shockingly by other parents. These parents should be ashamed of themselves for adding fuel to the myth that Autism is untreatable and only comes in the form of the stereotype. They have allowed their personal experiences with proven, effective therapies to interfere with considering the countless of unique children out there that need our support. How many parents will not even consider ABA because of parents like Barbara Barker? That happened to us personally. We heard ABA was bad from another parent, so 1 ½ years went by. Later, we met a DIFFERENT consultant that "got" our child's specific needs, and our special ABA program became the cornerstone to my son’s recovery. These comments do a heck of a lot of damage to all of our children.
We all need to take the perspective of the press. They are not the experts. They are only looking for a good story, something provocative. They cannot possibly understand this complex life after a few interviews. They are on the side of the NIH and
the insurance companies that are looking for parents like Barbara Barker. They are looking for researchers to make one negative comment and take it out of context, so they can get out of paying for these life changing services.
All of this is about children. The news about effective treatment for Autism should be acelebration in the press and with every parent as well, regardless if a specific treatment helped or not. All families should consider ALL viable treatment options. We all need to consider how our comments will serve in maximizing the potential of each individual, regardless of where they end up.
As a parent of a newly recovered child, I too have seen with my own eyes how each child responds so differently, even in the same family, to therapies. Honestly, I have very little faith that a neat little package of research for each therapy will ever exist, since no loving parent will put science before the welfare of their own kid.
I fear that parents will no longer "leave no stone unturned" regarding treatment. This scares me, a potential for improvement, even dramatic improvement, not even attempted. It’s critical to keep top of mind that each child is different and responds to
their own “special blend” of therapies.
There is such a wide description of programs and philosophies behind each therapist. Making blanket statements about ABA or dietary intervention is dangerous. Behind any fabulous recommendation is a person that did the therapy. People will always recommend what worked for their kid because it worked AND because of the details of the program and people who did it.
My hope in writing this letter, is that parents and researchers will seriously consider what they say before they criticize what helps many many children have a life.
More on this subject by Catherine Maurice