The Politics of Autism explains that autism services can be complicated, creating difficulties for autistic people and their families. Uncertainty another major theme of the book. In the concluding section, I write:
A key question in autism policy evaluation is simple to pose, hard to answer: How do autistic people benefit? How much better off are they as a result of government action? While there are studies of the short-term impact of various therapies, there is surprisingly little research about the long term, which is really what autistic people and their families care about. As we saw in chapter 4, few studies have focused on the educational attainment of autistic youths. For instance, we do not know much about what happens to them in high school, apart from the kinds of classes that they take. One study searched the autism literature from 1950 through 2011 and found just 13 rigorous peer reviewed studies evaluating psychosocial interventions for autistic adults. The effects of were largely positive, though the main finding of the review is that there is a need for further development and evaluation of treatments for adults.
When your child is diagnosed with autism, and you begin an applied behavior analysis (ABA) program, a question quickly follows: How do I know this is actually working?
It is a reasonable question—and it turns out the field of applied behavior analysis answered it more than 50 years ago. In 1968, Donald Baer and his colleagues published the paper that defined what ABA is and what it requires. One sentence has stood as the standard ever since:
“If the application of behavioral techniques does not produce large enough effects for practical value, then the application has failed.” (Baer, Wolf, & Risley, 1968)
...
If you take one thing from this post, let it be this: Ask your child’s BCBA to show you data from outside the clinic. Data that reflects how your child is doing in the situations that matter most to your family. If that data exists and shows meaningful progress, your program is working. If it doesn’t exist, you now know what to ask for.
Practical value. It has been the standard since 1968. You have every right to hold your program to it. Your child doesn’t have the time to waste on a program that doesn’t emphasize practical value
References
Baer, D. M., Wolf, M. M., & Risley, T. R. (1968). Some current dimensions of applied behavior analysis. Journal of Applied Behavior Analysis, 1(1), 91–97. https://doi.org/10.1901/jaba.1968.1-91
Cooper, J. O., Heron, T. E., & Heward, W. L. (2020). Applied Behavior Analysis (3rd ed.). Pearson.
