12 years ago, I was studying for my LSAT and filling out applications to law school. But then a little boy with Autism in my children’s school group who always prayed for chicken nuggets and thanked God for pokemon stole my heart. Growing up in a small town, I had never heard of Autism. When I started to google what it was, I found that there were more questions than answers and in that moment, I decided to dedicate my career to finding answers for parents.
When I started, I had the privilege of being trained in ABA, applied behavior analysis, by one of the original interns on the study that applied the principles of behavior to Autism. This was right in the heart of the Autism recovery movement where parents took their kids to DAN (Defeat Autism Now) doctors and wore t-shirts that said Recovery is Possible.
I was taught that Autism was a problem and it was my job to fix it. I would be successful if someone didn’t know that one of the children I worked with ever had Autism. To do that though, we had to fundamentally change who a person was.
In order to get my certification, I had to do student teaching in a school. There I learned something from a little boy then about twelve years old that I never forgot. What he taught me eventually became one of the reasons I started my own company and is one of the core beliefs of my practice today.
Whenever this boy, let’s call him Jack got excited, he always flapped his arms. I was taught to tell him to have quiet hands. Flapping arms is a part of Autism called stimming. As a society, we don’t like when people do it because it is different and different makes us uncomfortable. So, I was taught that to make everyone around this child comfortable, I should tell him to have quiet hands.
I was young, barely out of college. I was bullied in high school and didn’t want this boy to experience the same thing. I was learning from some of the best researchers in the world. It made sense and I did it without questioning it.
One day, when I told Jack to have quiet hands, he responded, “Why do you have to put my hands in jail. I wish they could be free like a bird to do what they want.” I then asked him why he flaps his hands. He told me it makes him free and it makes him happy.
I responded how I was taught to respond back then. I told him he couldn’t flap his arms because it was not what people did and he could do something more appropriate that would provide him the same sensation like play the drums. In ABA, this is called DRA or redirection to a functionally equivalent alternative behavior that is more appropriate. It’s a big fancy way of saying to teach kids to do something that makes society feel comfortable instead of what makes them happy.
For years I walked around doing what I was told, trying to take the Autism out of kids. It seemed to make the parents I worked with, the teachers and my supervisors happy. Until, one day, I couldn’t shake the question, “Why can’t I flap my arms?”
Why couldn’t Jack flap his arms? Because it makes other people uncomfortable? Would it really mean he couldn’t work or take care of himself or be a productive member of society? What if it wasn’t Jack that needed to change? What if as a society we just had to more loving and understanding and aware that people are different and do different things and that’s ok?
I love the principles of behavior and when applied appropriately it can be instrumental in helping a child reach his fullest potential. But, I no longer use ABA to try to change who a person is. I use it to help them be the best person that they are whoever it is that they choose to be.
Coming out as an Autism professional, never mind someone who is classically trained in ABA, is not popular. I took a lot of courage to come and say, “Jack you can flap your arms. Don’t ever worry about what people say. Anyone who matters will love you no matter what you do and you never have to change to make someone else happy.”
But, someone had to do it. Everything changes. In 1950, the official cause of Autism determined by Dr. Kanner was “refrigerator moms.” Literally, the official scientific reason that kids had Autism was that their moms didn’t love them. The official treatment was a parentectomy meaning they put the child in an institution thinking that if they weren’t around their evil moms, their Autism would be cured. Later society shifted to using electroshock therapy, drugs for schizophrenia and then eventually applied behavior analysis (ABA).
Since I started in the field 12 years ago, even the definition of Autism has changed. Why shouldn’t how we do ABA change?
What sets me apart from all other Autism professionals is that I consult with adults with Autism to learn more about Autism and to get their input on Autism treatment. I call the Bridge the Gap because the reality is that many adults with Autism today were born when parents were afraid to get a diagnosis because their kids would be removed from their home, given shock therapy or were heavily medicated. Even more, even when ABA first came around, therapists did horrible things you could go to jail for today to kids.
One of the things that comes up over and over is that adults with Autism want to be accepted for who they are. They are grateful for the therapies that helped them learn to talk and social skills so they can participate in society, but they also just want to be.
My first guest on the show Ryan Shinlder said it best, “I wouldn’t be here today. I wouldn’t have a lot of the opportunities I have if I wasn’t taught and drilled down a lot of those social skills. But it comes at a cost.”
Every day parents ask me if they should stop their kids from stimming. There really is no easy answer. The truth is , it depends. Autism is such a big spectrum. If you are reading this, you may have a child who is labeled as having “low functioning Autism” or what is now called level 3 Autism. Their stimming may manifest as a behavior that is dangerous to themselves or others. Of course you have to stop it. It also may be so disruptive to other people around them, it makes it absolutely impossible for them to fully enjoy things like dining out or going to the movies. I have seen stimming look like wanting to pull people’s hair, even strangers, throw objects or even banging their head on the floor. Of course you can’t let this happen.
Conversely, you may have a child labeled as having high functioning Autism. There stimming may look like flapping their arms when they are happy because it makes then feel happy and free. I will ask you the same question Jack asked me twelve years ago, “Why can’t he flap his arms?”
As a parent, you have to reconcile that your child is different than who you thought they were going to be. There is a certain grieving process that must take place. The child you thought you had may be someone different and their journey may look different than you thought it was going to.
They may not be the high school quarterback or find the cure to cancer. Or who knows, maybe they will. But their journey will be different than other kids and that’s ok.
God doesn’t make mistakes. Your child is exactly who he is supposed to be. They are perfect. Your child doesn’t have a disease that needs to be cured. They need to be accepted and loved.
Always hold them in their highest possible because people with Autism are capable of more than society as a whole has realized.
Get them all the therapies they need to learn the skills they require to be the best version of themselves and in the process change thems as little as possible.