I view the continued existence of ABA therapy as a supply-and-demand issue. Most anti-ABA efforts until now have been targeted at the demand side of the equation, trying to educate parents about the risks of ABA so that they don’t ask for that service. And there are efforts to decrease the number of ABA providers through education, which will eventually decrease the supply of ABA services.
But this view leaves out a critical piece of the puzzle. What about the middleman in this transaction? What about the pediatrician, who is writing the order for the service to be provided? The premise is simple. If you can stop physicians from prescribing ABA, you limit contact between ABA providers and autistic children, reducing the number of children being harmed. But, despite all efforts, doctors are still prescribing ABA. Here’s why:
#1 – They don’t know any better.
How is that possible? Well, there are two issues at play here.
First, doctors are conditioned to respond to evidence, not anecdotes. And as compelling as they are, most first-person writing about the experience in ABA therapy is anecdotal. It’s hearsay, without proof that the person writing is telling the truth with no hidden agenda. The problem is that every medical treatment has its haters. Anti-vaccine rhetoric includes thousands of blog posts proclaiming that vaccines cause all manner of bad things to happen to people. At this point (and I’m just being honest), most doctors ignore those kinds of reports completely, because we’ve been trained to focus our energy on evidence-based medicine. The hard truth is that doctors aren’t reading your blogs. We’re looking at the evidence, specifically at well-designed studies exploring whether these reported events are actually related to the treatment (vaccines, ABA, whatever.)
Right now, you may be saying “we have that!” And we do… sort of. Unfortunately, the available evidence of harm from ABA therapy is largely invisible to physicians. I know that studies show that ABA can harm children and that those harms can persist to adulthood. But, there is a really big technical barrier that limits my access to that data.
Some background might be helpful here. Physicians and other providers are trained to use literature to make clinical decisions. We are taught to use highly reputable sources, rely on well-constructed studies, and consider our clinical decisions in the context of literature. Most medical providers find evidence-based publications using a search engine called PubMed, which is run by the National Institutes of Health. A journal’s contents can be listed in PubMed only if it meets a certain set of quality criteria as judged by a panel of experts. Unless I’m on the hunt for a specific paper that somebody told me about, I’m not routinely searching in other places for medical evidence, and neither are my colleagues.
For various reasons, most of the literature containing evidence of risk from ABA therapy is not published in journals available in PubMed. If I search for adverse effects of ABA therapy in PubMed, I won’t find any relevant citations. Try it yourself at https://pubmed.ncbi.nlm.nih.gov/. Whether it’s right or wrong, if it’s not in PubMed, it doesn’t exist to most doctors.
#2 – They feel like there is nothing else to offer.
This is a much bigger issue than ABA. Parents come into my office all the time asking for remedies for all kinds of things. Doctors are victims of our own success. We can fix a lot of things, and now our patients expect us to fix everything. Colic, cold symptoms, problematic behavior, the list goes on.
One of the hardest parts of my job is to explain to parents that the only solution for most pediatric issues is a combination of time, support, and patience. Some doctors take the time to explain that there is no treatment, or that the situation is a normal part of childhood, or whatever. Some don’t. Some parents understand. Some don’t. And if a parent doesn’t like my answer, they can find a doctor that will give them some treatment, even if that treatment is harmful to their child with little possibility of benefit.
Cold medication is a great example of this. The FDA does not recommend giving cold medication to small children. Yet many of my colleagues still prescribe it. Why? Because it takes time and patience to explain that cold symptoms may stick around for a week or two and that there’s no effective treatment. Instead, some doctors would rather just give a medication, even when we know that it doesn’t actually reduce symptoms and can cause serious adverse effects. Because sometimes it’s easier than dealing with a persistent parent who won’t listen.
Now think about parents of autistic children, who are tired and feel like they have no idea how to help their child. In a 15 minute visit (and that’s optimistic – some doctors see patients for 5-10 minutes per visit), many of us don’t have the time or experience to address these concerns. It’s far easier to recommend a behavior intervention that will “normalize” a child’s behavior. Yes, I know it’s done through coercion and manipulation. But from the outside, it still looks like ABA fixes behavior, at least for a while. And that’s tempting to parents and physicians. Without evidence to the contrary, physicians are going to continue to recommend ABA therapy for parents.
How Do We Change?
First, researchers need to be rigorous in their study design and particular about the journals in which they publish. Many of the studies that have been done on the harms of ABA use very few subjects, and some have significant methodologic flaws that open them to criticism and make them difficult to publish. Good journals don’t accept poorly designed studies, and the best journals only accept studies that can be applied to large populations of people. So picking a journal for a manuscript is a big deal, and we researchers need to be mindful of making good choices, even if it makes publication take longer. Awareness of this blind spot in the literature is the only way to make data visible to the prescribing physician. If a paper can’t be found by a pediatrician in El Paso, TX, it might as well not exist.
Second, physicians need to be held accountable for high-risk prescribing practices. If we’re not even accountable for prescribing cold medication against FDA guidelines, how can we expect to reduce the number of recommendations for ABA? There are several ways to hold physicians accountable for prescribing risky treatments, and reporting to the state medical board is one of them. If you feel that a physician is making risky recommendations, this option is open to you and can usually be done anonymously.
To address the ABA problem, we are going to have to address every contributing factor, including the physicians who prescribe these therapies. I’m confident that most of us would choose differently if we knew better. And once most pediatricians are onboard, the rest will follow.