It is a term that causes all facets of the autism community to calm down and listen: Evidence-based Interventions. It implies a sense of hope and security. “Why, if its evidence-based”, we say to ourselves as parents and professionals, “it is bound to be effective. After all, it has been proven … verified … it is evidence-based.” If I am a die-hard believer that if I “get the mercury out” then I will get my child back, then I want evidence to show me that my chosen path is the correct one. If I have a more skeptical nature and believe that science really hasn’t given us any cause yet, I certainly feel better exercising my duties by supporting my child with an intervention that provides the highest likelihood of optimal outcome. If I am somewhere in between, or have some completely different theory about autism (such as: I parent a Crystal Child), I still want to do the right thing. I want someone to filter through all of the scientific data and provide me with a roadmap for positive results. Dammit, tell me what to do so I can get it right!
Quite obviously the proper approach, the thing to do that will allow the greatest opportunity for your child’s quality of life in the long-term, is to follow whatever the prevailing scientific evidence shows is the best thing to do. Right?
Well ….. maybe.
Based on the most recent evidence released, considered alongside other evidentiary findings both collaborative and antithetical, we should no longer continue to provide ABA-type therapy to my son, Jason if we are stoic followers of the Evidence-Based approach. Oh, but we will, as we definitely feel that – despite evidence to the contrary – the behavioral intervention that Jason has undergone at varying levels of intensity since age 3 has been beneficial to him in any number of ways. But another study (more evidence!) states that ABA is not benefiting autistic children in any measurable way.
The purpose of this entry is not to call into question whether or not Evidence-Based Interventions are the correct interventions to utilize to support one’s autistic child. Instead, it is to promote a discussion on how we define Evidence-Based (hereafter referred to as EB), how we consider the effects of its application, how we ensure that it remains as undiluted a term as is possible, considering the number of scientific “camps” that will exercise territorial rights over it.
There are two things I would like to discuss up front:
First: In introducing this topic – one I feel is very important – I was directing my statements towards parents and professionals. Unlike most of my writings, I excluded autistic individuals. The reason for this is that – up until now, anyway – the views of autistic adults have not been seriously considered in determining the best “early-intervention” approaches to take. Like many others, I am interested in seeing this change, and believe that one legitimate way to start that change is to spark a change in the way autistic people are viewed within the context of this issue. Therefore, anyone who read the intro to this entry and did NOT think to themselves, “Where does the autistic viewpoint come into play here? What if the ‘evidence’ runs counter to what our adult autistic friends can tell us about a given approach?” then please consider yourself called-out. It is essential that you and I and all the scientists engaged in this dialogue put those considerations at the forefront of any decision-making process, as virtually all ethics-based decision-making processes cannot proceed without it.
Second: I have had several separate but significant events happen recently which have forced this issue to the forefront in my thinking about autism and what my son’s future might look like.
Our funding for ABA stopped due to Jason’s age. We have paid privately for most treatments for our son, and done so with the understanding that he is benefiting from them. Adding the expense of his ABA is not easy, but we of course will do so (actually, have done so for a while) without any hesitation since we believe he tangibly benefits from it.
 I recently made an acquaintance who has been able to provide me with tremendous insight on many aspects of autism. To use the term acquaintance works only in the context of a semi-formal discussion such as this. In truth, I have made a friend. This friend has provided me with some incredibly profound and deep insights on the EB issue, among others, and I am extremely happy that I have found a like-minded person with whom I can discuss these topics.
I read a very good assessment of the most recent study on the efficacy of ABA on Michelle Dawson’s blog. If one reads this analysis and also follows the trail Ms. Dawson leaves via links to other analyses, it is plain to see that a) EB is not as easy to define as one would think, and b) if I truly believe EB is the proper approach, perhaps it is time to drop ABA. As I stated above, we have no intention of ceasing Jason’s behavioral therapies – but does this them mean that I oppose EB interventions?
So, where to from here? I can think of at least 5 major topics of discussion on the issue of EB treatments/interventions. In my next few posts, I plan to review some of these issues – both positive and negative – that I see as being crucial to the welfare of autistic individuals. What I would like to do in the meantime is to invite all autism bloggers to discuss this issue - now. I have reason to believe that this discussion is urgent and timely, and that the more progress we can make on establishing a common position on this, the better off all autistic individuals will be in both the short and long term. Please join me in discussing this important issue in any and all forums.