Disclaimer: This is about our family and what worked for us. Quitting may not be the best option for all.
I am mom to three kids and stepmom to one. Roger, Lucy, and Porkchop. Roger is 15, and is the main topic of this blog post. He was diagnosed with autism at 11. He loves books, video games, and technology.
Lucy is 10. She also is autistic. When she was a toddler, it was classified as classic autism though today they say she has more of an Asperger's type. She loves My Little Pony, reading, and school. Porkchop is 8. He got his nickname from a cousin years ago and it stuck. He loves skateboards, bikes, sports of any kind. He is all boy and did I mention a mild hemophiliac as well? We live in Stafford and our family also includes Dad, two dogs, ducks, and fish.
Between my husband and me we have four kids, ages 15, 12, 10, and 8.* Three boys and one girl, so we girls are outnumbered. We deal with autism, executive functioning disorder, a movement disorder, speech issues, hemophilia, anxiety, and the list goes on.
What is the first thing any parent gets when their child is diagnosed with autism? A list of recommended therapies. Most of which have unfamiliar names and unclear purposes. Look at the list: between ABA, OT, ST, PT, CBT, etc. therapy can become a full time job. Did I mention you have to learn a bunch of new acronyms?
Our case was no different. When Roger (now 15) was diagnosed at 11, I was handed a list of suggested therapies. The list included occupational therapy, speech therapy, applied behavioral analysis, cognitive behavioral therapy, social skills and a psychologist. Here the thing about all of these: the wait lists are huge. Some of the lists were almost two years out. Just calling becomes a job. Most of the places will either say they have no room or they just won't call you back. If you do get in, their mindset may not be the same as yours.
I called a couple different companies for ABA; three months later one of them got back to me and sent someone to our home to do intake for Roger. We had problems from the start. First off, they normally only dealt with small children not a 12 year old. Second everything was scheduled during school hours; this was more for their convenience than mine. This also meant he missed a day of school to do the intake.
The lady came out and spent about two hours with us. They asked a bunch of questions, observed, all that stuff. In the end her plan was to stop behaviors she saw as annoying, where my idea was to work on more practical issues that I was told they could help with. I don't care that he taps his foot or paces, that's no big deal. He needed help organizing; everything from his room, schoolwork, even showering. This was not her plan. Before any of that could happen he would need a minimum of 20 a week ABA. I didn't feel that was appropriate.
How was he going to participate in after-school activities? How was he going to just chill out and not have to work all the time? If we followed her plan, he would go to school then come home and work with ABA until dinner time then go to bed. What kind of life would that be? After the intake we never saw them again. They did call a couple of times but unless they were willing to help where we needed help, and reduce the minimum time, we were not interested. ABA was out the door before it even began.
Social skills groups, wow don't even get me started, what a joke! I called and spoke to a few. Almost all of them were full, plus the cost for a month (which was just a few hours on Saturdays) was upwards of $800+. When I asked what they in the group, did the response was always, "We facilitate social skills." What does that mean? "Well, we give them scripts in a group setting, play games, etc." So the conversation is forced? "No, it is facilitated by an adult who is trained." That still sounded forced to me.
The more they talked, the more turned off I got. A friend had also told me of a club in town that had lots of activities for kids in a no-pressure environment; they could pick and choose what they wanted to do and it was only $50 a year. I should mention this was not a social skills group, they never claimed to be any sort of therapy. However, the beauty in this system is that anytime you get people together who have similar interests or enjoy the same activities, they do interact with each other! If we hadn't moved to a different county we would still be part of this group because it was fun. It may just be my opinion, but the best social skills training for my son has not come from a professional but rather just from being a kid. The best way to learn is to get out in the world and experience it. With more experience you learn what is expected and how to act. This goes for all of us.
We did speech for a year for Roger and three years for Lucy. Lucy did not talk until she was five and yes, I do think the speech therapy she received through the school greatly helped her. Roger has a different speech pattern. No one is quite sure how to explain it but he can be understood. The speech therapist worked with him for a while and really nothing changed. After a year of speech therapy we sat down with the speech therapist we all (Roger, the speech language pathologist and I) decided that it was time to end speech. He still does receive some speech twice a month at school but all after-school private support has ended. It was not changing anything, just using up time.
Next on the list: occupational therapy (OT); we did try this. He has some handwriting difficulties that his occupational therapist was willing to work with. While we had OT for a year, the handwriting was thrown to the side about a month in. We all realized nothing was going to change and it was just stressing him out. He can use a computer, so it wasn't worth the stress to force it. They moved on and did some strengthening, balance, and fine motor things instead. After a year we stopped. Really all we were doing was spending time in offices taking away from activities that he was interested in.
We never did find a psychologist that could do CBT with him for anxiety. Once you say autism they all back away. Since we moved we do not have the severe anxiety anymore. I know for many that is not an option but for us it was. We needed to move and it just happened to have a good benefit for our son.
It's been three years since we quit all therapy. If I had to do it over again yes I would make the same decision. Knowing what I know now we probably wouldn't have gone through all the stress of finding therapists, doing the various intakes, and spending so much time in offices that did not help. The kids "social skills groups" are now after-school activities. Nothing is forced. Lucy has found yoga helps her anxiety. (More about that later).
In the time since we have moved and ended all the therapies, Roger's meltdowns have lessened. He is no longer stressed by therapy. He has a few friends in the neighborhood from school, and he participates in activities. I truly believe that just being kid and participating in activities he likes such as baseball and multiple after-school clubs have done more for Roger than any therapy I could have paid for. Yes we have worked to change some behaviors but really that is part of growing up. All kids have behaviors that need to be changed but there is a difference between changing a behavior and trying to change a person and I for one cannot stand behind any therapy where the entire goal is to change a person.
*The 12-year old does not wish to be mentioned in my blog posts.