Moving Beyond Autism Awareness and Acceptance

According to the Autistic Self Advocacy Network (ASAN), “autism acceptance” shouldn’t be limited to a specific day or month. Rather, it should be an ongoing, collective effort to  create a world that values, includes, and celebrates all kinds of minds.

As a child psychologist who has worked for decades with families of children on the autism spectrum, I believe that we are far from making this a reality. That’s particularly true in our education and early-intervention systems, in which the prevalent view is that autism is a disorder to be treated rather than, in the words of ASAN, “a natural variant on the human experience.” From my vantage point from the front lines of autism support, I have come to feel simultaneously disconcerted and hopeful.

When the United Nations established Autism Awareness Day in 2007, it seemed like a noble effort, a way of bringing attention to autism in the hope of encouraging early detection and “treatment” across the globe.  After all, most people viewed autism as a medical disorder that needed to be addressed early and aggressively with evidence-based treatments. Research, books, and therapies gave rise to entire industries aimed at  “battling” autism. Many of those working in the field followed approaches that focus on altering surface behaviors as quickly as possible to help children to appear more “typical.”

That was certainly the approach to autism that I learned in graduate school and in my postgraduate training: to encourage behavior change through cognitive and behavioral treatments. From early on, though, I felt that something was missing. The feeling in the pit of my stomach together with my maternal instincts prompted me to seek out alternatives to behavioral treatments . One was the DIR model, which stood in contrast to approaches that prioritized behavioral compliance over respecting the emotions of children and their parents.

What confirmed my suspicions were new and compelling kinds of data that were becoming available: the accounts of autistic individuals themselves. (Note: In deference to the recommendations of ASAN, I am opting to use “identity-first language” — i.e. “autistic person” rather than “person with autism.”) Ultimately, the most important voices on this topic aren’t those of professionals (myself included!) but of autistic individuals who have experienced various treatments and can share their unique perspectives.

One of those from whom I have learned the most is Ido Kedar who, in his book Ido in Autismland, wrote critically of the early, intensive treatment he experienced: “Maybe they assumed I was too dumb, or they simply couldn’t see what I had learned because I learned it in a different way than their methods” (Ido in Autismland, 2012, p.47).

I have also learned from my own patients, many of whom have told me candidly that behavioral approaches they have experienced can take an emotional toll. A standard element of Applied Behavioral Analysis (ABA) for example, is intentionally ignoring “non-preferred” behaviors.  “I get ignored,” one client recently told me, “but I don’t think it’s nice to ignore people.” Indeed, it’s impossible to ignore a behavior without ignoring a human being at the same time.

Of course, these are my opinions. If you are the parent of a child who has benefitted from ABA therapy and you feel that the approach is respectful of your child and your family values, then you should certainly continue to advocate for what you feel your child needs.

What’s essential, though, is not to force behavior change at the expense of the child’s (or parent’s) emotional state and sense of safe safety in relationships.  If you are a parent and your child is emotionally stressed, or if you feel uncomfortable when observing your child receiving certain strategies, then I encourage you to honor your instincts, speak up, and find alternatives. There are plenty of ways to encourage your child’s team to place joy and trusted relationships front and center. In fact, one parent group in California is advocating for legislation that would allow for more parent choice in autism treatment (you can find resources on their website).

To help determine whether a particular autism intervention is appropriate for your child, consider these questions about any approach:

—Does the approach degrade a child’s sense of trust in relationships or fellow human beings? If so, don’t use it. (Example: ignoring a behavior means ignoring a child; don’t do it.)

—Does it consider the adaptive value of a behavior before trying to “extinguish” it? (Example: If a child hums to keep himself calm, does the approach encourage making him stop humming without trying to understand why he’s doing it?)

—Is it respectful of the family’s culture, values, religious beliefs and parenting style? (Example: at home, parents might opt to comfort a child when she is distressed, but her teacher might require the child to self-regulate without emotional support).

Certainly, no intervention should cause a child any emotional pain. And it’s problematic to ask children to do things that feel counter to their natural brain wiring or comfort levels. We need proceed with respect and caution, helping children to try new things slowly by following their signals. If a therapist tells you that your child needs to experience high levels of stress in order to grow, be aware that there is voluminous research about neurodevelopment to counter this misperception.

Regardless of children’s degree of neurodivergence, their brains and bodies thrive under the conditions of relational safety and connection. It’s time we all spoke up to let providers and teachers know that it’s time to update the ways we approach supporting autistic children and move beyond autism awareness and acceptance.

Beyond Behaviors is now available on Amazon.