A friend of mine recently took her autistic 7th grader to a doctor appointment. During the appointment, the developmental pediatrician told her that after observing the behavior of her other 15-month-old son whom she had also brought along, this child was also on the spectrum. The doctor went on to recommend enrollment in a full-time ABA therapy program now if she didn’t want her baby to “end up like” her older son. My friend was shocked by this news and left wondering how best to proceed. The doctor’s aggressive unofficial diagnosis and recommendations left her worried that if she didn’t follow the orders, she would be failing as a parent.
With earlier diagnoses, recommendations for intense therapy such as ABA have been coming at younger ages in recent years (even before age 2). The medical community seems to support earliest interventions in attempts to “rewire” the brain when it is most receptive (or “plastic”) to rapid learning and developmental changes. When my own son was diagnosed four years ago, his pediatric psychologist wasn’t in a rush. We first visited her when he was 3 1/2, and she said that she could have diagnosed him, but she wanted to wait six months to be sure his delays (possibly due to his premature birth) didn’t diminish or disappear. He was already receiving regular OT, ST, and PT, so she said the only thing we might want to add was ABA. But she didn’t push us. Was the pressure my friend received a sign of the times or an indication of an overly-aggressive doctor inappropriately using fear tactics to encourage regular clinical observations?
I think it’s critical for any parent considering ABA to keep in mind the overwhelming criticism of the therapy from autistic self-advocates. Because ABA has emerged as an effective evidence-based practice, insurance companies have been pressured to cover the therapy, and ABA clinics have emerged everywhere. Some advocates discourage ABA because it is so often implemented inappropriately by therapists (These advocates don’t necessarily condemn the therapy, but how it is so often administered). Others disapprove because of the intent to make a person on the spectrum look less autistic. But healthy principles of ABA can be administered outside of a rigid, clinical setting. As Julia Bascom, deputy director of the Autistic Self Advocacy Network (ASAN) explains in an interview for Parents magazine, “The idea of providing structured instruction or breaking tasks into small parts is hardly unique to ABA, and is pretty common across a variety of supports aimed at autistic people and people with developmental disabilities.”
A larger problem is society’s devaluing of people on the spectrum, including a disregard of their opinions. The assumption that autism is a horrible disorder that should be eliminated suggests there is something wrong with people on the spectrum and that they are less important, less human than the rest of the world. I think it should be a doctor or psychologists’s responsibility to explain the opposition many autistic self-advocates have to ABA and direct them to well-balanced resources. We should stop assuming that an autistic voice is less valuable, or worthy because it is from someone on the spectrum. We should do what we can to embrace neurodiversity and support those on the spectrum rather than trying to get rid of autism as early and aggressively as possible regardless of the potential “damage” done.