Search This Blog

Friday, December 2, 2022

Fad Cures

 Autism parents are highly vulnerable to pitches for quack "cures."

In The Politics of Autism, I write:

The conventional wisdom is that any kind of treatment is likely to be less effective as the child gets older, so parents of autistic children usually believe that they are working against the clock. They will not be satisfied with the ambiguities surrounding ABA, nor will they want to wait for some future research finding that might slightly increase its effectiveness. They want results now. Because there are no scientifically-validated drugs for the core symptoms of autism, they look outside the boundaries of mainstream medicine and FDA approval. Studies have found that anywhere from 28 to 54 percent of autistic children receive “complementary and alternative medicine” (CAM), and these numbers probably understate CAM usage.

Bozena Zawisz at Psychology Today:

Like many parents of newly diagnosed children, I initially coped with the complexity and uncertainty surrounding autism by turning to Google in search of answers to the many questions I had about my child’s developmental potential. I found a variety of conflicting information, including advertisements about alternative interventions ranging from elimination diets to fidget spinners and anecdotal accounts that claimed to have cured autism. I was not alone in my quest. Research suggests that up to 95 percent of parents look into alternative treatments for their children (Hofer et al., 2019).

Some emerging therapies, such as music therapy or mindfulness interventions, have promising results and simply require more substantiated evidence to boost their level of recommendation. Others, such as gluten-free or casein-free diets, lack consistent evidence of effectiveness (NAC, 2015).

Over time, I experimented with many alternative therapies and supplements. I also accrued a deeper understanding of how my son experienced the world and came across increasingly more neurodiverse perspectives of people on the autism spectrum themselves, as they are becoming increasingly present in research.

I remember pausing amidst supporting my son with his homework and appreciating that “this is not going away.” I realized that the characteristics I loved about him, including those associated with being on the autism spectrum, such as taking things literally, being honest and direct, or seeing the details of a situation, are likely to be our ongoing companions (e.g., research finds that detailed-oriented cognitive style has been persistent in individuals on the autism spectrum across time (Bojda et al., 2021)).

I finally figured out where I wanted and needed to focus my attention: on acceptance, on advocacy around how the school environment can support my child’s needs (e.g., through breaking down tasks and offering visual support), and on my child’s emotional learning (supporting my son’s awareness of implicit emotion by making it explicit and deepening his practice of coping).