When my son A was 6 months old, I knew he was autistic. I was absolutely certain of it. I really enjoyed watching him play and explore the world. He used to spin the rainbow stacking rings on their side and figured out just the right amount of pressure to get them to spin for long periods of time. We knew he was autistic, is autistic, and we weren’t sad about it at all. It was just how he is made and we loved him as much as, if not more than ever.
I later found out that many people grieve at this news. I can honestly say that we did not ever feel grief and do not. I wasn’t sad about it and was confused by the hushed tones in which it was discussed. I was taken aback to be offered condolences over something I felt no sadness about.
When A was about 2, it was recommended by his doctors that we seek out a formal autism diagnosis from the children’s hospital in case he needed therapy or other services. I brought him in and we met with various doctors, a speech therapist and occupational therapist over the course of several days. They played with him and chatted with me at length. We reconvened and they told me they agreed that he is autistic. It was recommended that we put him in 40 hours of weekly ABA therapy as well as preschool. I had no idea what ABA was but 40 hours a week of anything structured for a child seemed very excessive.
I called the ABA place just to get the doctors off my back and began to research what it was. Someone from an ABA clinic came out to meet with me and my children. When she arrived, A was happily playing with a whisk he carried everywhere with him. He was flipping the light switches on and off quickly and laughing. It was one of his favorite games. The therapist frowned and took out her notebook then began to write. She said to me “We can get rid of that.” I was floored and quite honestly offended. I told her I didn’t want to “get rid of” something my child found fun that was hurting absolutely no one.
The more she spoke, the more I realized ABA would not be a good fit for us at all. I told her we were not interested in changing him or making him appear less autistic. She disagreed and said if we did 40 hours of ABA for the next few years, he could “lose his diagnosis”. At the time, the gravity of the ridiculousness of that statement didn’t hit me. It made no sense but now I realize how downright ignorant and ableist of a belief it is.
Autistic people don’t become non-autistic. I knew she meant she would attempt to suppress the things he did that make him different or stand out. This was not something we were interested in or cared about on any level. Quite the opposite actually. We strongly felt and feel his needs are best met by allowing him the freedom to play how he wants with whatever interests him. He needs to stim and have freedom of movement, not 40 hours of intensive therapy (even if it is under the guise of “play”).
A did some speech and occupational therapy through the county. He also did private OT. Between him and his (not yet identified as autistic) siblings, we were going to 4-6 total therapy appointments a week. This included OT/speech and PT. It became exhausting quickly and left us few free days to just play and hang out in pajamas like the kids wanted to. Once my son began to walk at around age 27 months, the PT gave us the option of stopping, which we gladly took.
I felt like the appointments for therapy and doctors were making us all stressed out and that we were rushing around too much. Even though the therapy was fun and play based, many days the kids did not want to leave the house and forcing them to go felt wrong. We gradually began to stop doing therapy. Our stress levels went down as our number of appointments went down. I felt strongly that the kids needed to be able to be kids and have tons of time for free play.
We were losing 4-5 hours a week to these appointments and I didn’t think the therapy was necessary. I understand that some kids need speech or PT and am not saying no one should do therapy. I am saying I did not feel it was a good fit. I was opposed to so much therapy, but allowed myself to be pressured into believing that they needed to be in speech or OT.
I can look back now at the three years A spent in weekly speech therapy and the 18 months since we stopped taking him, and say that I feel most of the changes in his expressive/receptive language were a result of time and maturity. If I had it to do over, I would not have sent him. I think children talk if and when they are ready, if ever. We do utilize AAC at home with my younger son who is non speaking. Some autistic children will communicate in other ways that are just as valid and should be respected.
So now, six years after realizing A is autistic and after his two siblings have also been identified as autistic, we are nearly therapy free and much happier for it. We do an OT consult for A and are beginning quarterly speech consults for my younger son.
I think the pressure to do so much with and to our autistic children is dangerous. They are losing out on being kids, playing, having fun. I used to think if the therapy was play based and my kids liked the therapist, that it was kind of like playing anyway. I hear a lot about therapies that “build upon kids interests” I saw with my own eyes a therapist who continually asked what my son’s latest favorite movie or character was, and then used that to try to get my son to play certain games or do things. Sadly it really ruined his love of that thing and he no longer wants any part of it.
These types of methods are viewed as fun and harmless, but I really believe we need to rethink that. If a child was not autistic, would we use their hobby as a means to try to get them to do certain things? If not, we need to stop thinking it is okay to use an autistic person’s hobby or interest as a subtle attempt to gain favor and manipulate/fix/distinguish “autistic behaviors”.
Children need to be allowed to be children. They should not have to spend all day, every day in therapy. Children were born to move and to play. We used to shuttle to multiple appointments every week. It felt wrong but at the time I didn’t trust myself enough to stand up and say “No, OT/PT/speech every week is too much. My kids are stressed.” I finally did but in hindsight I wish we had never done it and regret the two years we spent racing around to 4-5 appointments a week for my older two children.
My younger son is 4 has never been in therapy. Since he is autistic, there is a lot of pressure from doctors and the county school system to hurry up and get him in “early intervention” and intensive therapy. I do not even like the term early intervention. It is inherently pathologizing and ableist. It implies autistic children’s natural paths are wrong and must be stopped and changed by others “intervening” in them.
We need to stop believing the lies we are peddled; that there is some mythical “window of opportunity” in which children must be taught all the things before it is too late. Children are always learning and changing and growing. We are unschoolers and my children are always learning new and interesting things just going about their day. The fear mongering towards parents is dangerous and is costing children their childhood, a time that is precious and fleeting.
Now we spend our days outside playing, at the library, at the playground, watching TV, playing in the mud, exploring the community on our daily walks and doing whatever we feel like doing. I was wrong to do so much therapy during those early years. I wish I had trusted my own instincts. Children develop on their own path and in their own time. We can’t and should not, force it. There is so much joy and peace in freedom. This is how we live now. We have taken back their childhood, and our autonomy.