In the war for attention, funding, and autonomy among autistic people and caregivers, there are various armies. There are the autistic self-advocates (SAs), who have been loud in demanding a seat at the Internet and policymaking tables. In addition to condemning Applied Behavior Analysis (ABA) (a widely-adoped, oftentimes relentless therapy for training autistic people to adopt positive behaviors and learn new skills), SAs have argued that parents like myself should not speak for our autistic kids.
On the other side of the ring, the voices from parents who are living with kids who have “severe/profound” autism” have also been getting some attention. These families demand more support from government agencies and mental health providers, who have thus far not been able to adequately address this type of autism, institutionally and financially.
However, I feel like there’s a third voice that could use some attention on this battlefield: the experience of families and autistic people who have found a path through “profound” autism. I’m speaking to you from this third perspective. We have discovered that–while autism will always be entwined with my son’s brain and my family’s daily life, there is a way around it, to some extent. In partnership with my autistic son–a self-advocate in his own right–and a determined group of teachers and other families on a similar path, we have navigated our way to the intellect and personality that has always existed behind the wall of my son’s autism.
Our son stopped speaking at age 3. For the next decade, our family fell into the category of those who were desperately trying to get the world to understand that their autistic child wasn’t on the Aspergers/Rain Main side of the spectrum, but waaaaay on the other end. And woe to us: things were very, very bad around here. I wrote blog posts and shared a few desperate moments on Facebook, where I begged people to understand just how bad it was. At the time, I identified as a member of the second army. I was attempting to express that all-to-common human instinct to be seen and understood, especially since the Self-Advocates appeared to want to speak for both me and my son–despite their protests to the contrary.
The inflection point arrived when my son was 13, and someone convinced me to introduce the Rapid Prompting Method (RPM) to my son. As a parent who was cynical and burned out from various disappointing therapies, my expectations about RPM were low. I was also skeptical, having read only through the first and most popular internet search results about RPM…which are not kind. However, after about four months of training and practice, my son was answering basic questions. And within eight months, he was using a letter board and eventually a computer keyboard to spell out complete, complex, and artfully constructed sentences, demonstrating a level of intellect, humor, and self-awareness we had been completely unaware of during the previous 10 years.
We all suffered during that previous decade. Our son was rendered completely silent by his autism, powerless to communicate beyond only the most simplistic needs and desires. Essentially locked inside of his non-speaking autistic brain, he could not explain to us why his body did what it did. He couldn’t ask for help. He could not even tell us something as simple as what he’d like to eat for an afterschool snack. And now, thanks to this “third way”, although our son is very much still autistic and certainly cannot speak, he is on the path to achieve his dream of earning a college degree.
These days, my son is completing coursework online that will allow him to earn a high school diploma. When we go out to eat, my son gets to choose what he wants from the restaurant’s menu. He writes essays about life as a non-speaking autistic, and has some early-stage plans about developing an online social network for people like him. When we meet with his psychiatrist, the doctor asks my son how the medications are working and how he is feeling, rather than relying on his parents’ vague speculation about what might be happening inside their son’s brain. When we send him to school or leave him with third-party caregivers (which he will still rely on for the remainder of his life), we can ask him afterwards how they treated him, and have insight into how people care for him when we are not present. This last part, alone, is worth the time and effort we have put into RPM as parents of a disabled child, who have lost a lot of sleep wondering whether our child will be safe, when we are gone from this earth.
Looking back at the autism battlefield, I realize how hardened I had become, before we discovered our new, infinitely more pleasant reality. I won’t speak for my son, husband, or daughter here. But I had committed myself to a life of self-described misery, and to the camp of parents who were determined to burn the world down in an effort to secure desperately needed help for their “severely” autistic child and their family. I stuck my fingers in my ears and screamed internal profanities at those self-advocating autistic adults who accused us of overdramatizing the suffering autism had wrought upon families like mine. And I had even bought into the skepticism and quackery warnings that RPM has been branded with by professional therapists and teachers, who brandish ABA as the only approved therapy for non-speaking autistics.
But then I heard that other, quiet but insistent voice inside my head: “What if you’re wrong?”
And I am profoundly grateful that I listened and opened myself up to the possibility that my son was, indeed, “in there.” He is a bundle of sensory reflexes and demands that do not align with the way most people’s bodies work. His mouth cannot shape itself around the sounds necessary to form words. His autism cannot be categorized as the quirky, socially awkward kind, but is instead the kind the leads me to have to apologize to a group of strangers at Target after he bolts down the aisle while making strange noises and heads straight for them.
Despite the outward evidence that might suggest an intellectual disability to the unitiated, my son is actually profoundly intelligent. He’s an astute observer of people, and a witty explainer of what it’s like to be non-speaking and very autistic.
And he’s not the only one of his kind.
If we are to become a truly inclusive society that leaves no one behind, then it’s time that we consider the possibility that we might be wrong about many “profound” autism cases. We might be wrong about the idea that there is a single, gold standard therapeutic approach for non-speaking autistic people. We might be wrong about RPM and its derivitives. We might be wrong about giving up all hope that life will improve for families whose loved ones are on that other side of the autism spectrum.
I certainly was.