When I was first trying to figure out how to help my son climb out of the fog of autism, I was desperate to know what other parents were doing. I spent a lot of time in those early months doing my own research and picking the brains of professionals and other parents of children on the spectrum.
We began with our state’s Early Intervention program but quickly found out the type of therapy we were being offered wasn’t going to work for us. At eighteen months of age, our son was only being offered two to three hours of therapy a week, none of which was ABA (the type of therapy our development pediatrician was recommending for my child at the time). During his Early Intervention sessions, we watched as our one-year-old was told to sit in a chair and offered cookies in exchange for eye contact and pointing. It seemed a lot like dog training. I couldn’t help but wonder how this was going to translate over to him actually wanting to participate in our world.
We didn’t even last two months with Early Intervention. We were told we might eventually qualify for more hours but that we would have to wait and see. It didn’t seem like they understood just how much therapy my son needed or how frustrating it was to feel like time was ticking away. After Bean’s sessions were over, he would go right back to his stimming and detached behaviors.
I wrote here about how we managed to finally find a private therapy team to help us. We got very lucky for a couple of reasons. First of all, a good outreach program is hard to come by. Our developmental pediatrician and regular pediatrician were unable to help me find therapists. They said that all parents of children with autism were in the same boat. There was only so much help to go around. Even when I would come upon good outreach program, they often had long waiting lists. Bean wouldn’t be able to even start sessions with them until he was close to three years old.
I should point out too that we didn’t exactly have the money to pay for private therapy. Because of the generosity of our family, we were able to pool together the money until insurance could pay at least some of it back. This isn’t something most families can do or something most families should have to do. Sadly, this seems to be the current state of autism and what is keeping many parents from being able to give their children good quality therapy early on.
Why we like ABA
I know of several parents in the autism community who aren’t fans of ABA and it’s “rigidity”. I understand their point of view. I think what we liked about ABA for our son had a lot to do with the team we were working with. They have always been willing to alter the program according to our son’s individual needs. That is what any good therapy program should do, regardless of what type it is. So, for example, my therapists came to understand when my son’s stimming was related to the gut, and they would understand why it was important not to push him to behave in a “typical” way during that time. They calmly offered him alternative ways to behave when necessary but came at it with a gentle and understanding approach. They took the time to see what kind of rewards really motivated my son. He started to thrive on their praise and affection alone and they built on that. There was no sitting in a chair for an entire session. Play was the basis for learning. They found a way to help him learn how to learn and to enjoy the process.
Of course, there are certain principles that we followed that are very ABA. It is the basis of our program. But we call it contemporary ABA, a more modern version. If there are other approaches that I find during my research that I want to try, I know I could suggest it and I would be heard. Our therapists, and specifically our program supervisor, were willing to see beyond just treating symptoms with a blanket approach and to view my son as an individual. It’s been a nice collaboration of their professional expertise and my intimate knowledge of my own son.
I am fortunate to have our team and to have them be so receptive to my feelings. As the parent, early on I was still extremely fragile emotionally and I inundated my son’s therapists with questions. They treated me carefully and respectfully, and never ever like a nuisance. Autism might have been part of their everyday world, but I was still getting used to it.
After being at this for a few years now, I’ve learned that every parent does have to forge their own path when it comes to autism therapy. What works for one child may not work for another. I think the most important thing is to make sure the collaboration between yourself and your child’s therapist is as open and honest as can be, that you are reviewing your child’s program on a regular basis to ensure that it continues to lead him or her in the right direction, and that it is the best fit for where they’re at currently in their development. Keep a close eye on things and be ok with being vocal about what your gut is telling you. There are good days and bad days, but our kids can and will learn. I intend to write more in the future about the amount of therapy my son has received over the past two and half years, when the number of hours of therapy received matters and when it doesn’t, and how we’ve successfully incorporated play and socialization into our program.
So stick around!