I’m 23 years old and I was diagnosed with autism at the age of 4. During this time, I spoke in my own language, I had a lot of extreme behaviors, and I found the world to be a horrifying place.
When I was 6, I started having home-based applied behavior analysis (ABA) therapy, and this went on until I was about 13. This therapy was not only home-based, but also involved working in the community.
For example, we would frequently walk to town. I had therapists coming to my house every day (except for weekends) to teach me new skills. I prefer to see the therapy I received as a support to make progress rather than an intervention that changed me. I, along with my mother, speak to parents who attend the ABA Saturday School in Liverpool and Manchester. I am glad parents want to listen to me to understand and learn from my experiences of ABA.
I know there are some adults who had ABA as a child and may feel that it “damaged” them. I believe ABA has been done badly in the past, but it can be helpful if it is focused on the child and based on play and interests. This was the case for me as a child. Despite this, there were a few programs I didn’t think were helpful, which I will address later.
I’ve made a lot of progress from when I was a child. I don’t think I would have made as much if it wasn’t for the therapy I received. The therapists taught me a lot of things. They taught me social skills and everyday living skills, like brushing my teeth and washing my hands. Those things might sound very basic, but to me they were challenges. I think the biggest and greatest thing I learned from ABA was how to control my anger. Before then, I would get very aggressive and kick and hurt others. With the therapy, I learned how to manage my anger and anxiety.
One of my favorite memories was our first banquet when I was about 8. We had been learning about the Middle Ages, and my mum and four siblings would join in and dress up. This became a tradition, and we would end each term with a banquet. I loved them so much; we would plan them, the menu and study the topic. I think they were teaching me a lot of things, but it was fun for me. We had a lot of topics: pirates, Egyptians, “Star Wars,” “The Lord of the Rings,” Christmas, “The Chronicles of Narnia,” “Charlie and the Chocolate Factory,” the Tudors, “A Series of Unfortunate Events,” “Doctor Who,” “High School Musical” (embarrassing, I know), “Little House on the Prairie” (by now my sisters were getting in on the act), and the last one was a McDonald’s banquet.
The therapists also tried to help me to make friends by taking me to Beavers. My therapists would often invite some of the boys from Beavers back on play dates with me. This helped me to work on my social skills. I enjoyed hanging out with these boys, but I didn’t always follow the rules. One time I was with a boy at the park, and I left him to go on the swings by myself, which apparently you’re not supposed to do. The therapists would also play Action Man with me, at the same time as introducing me to how to play with other kids.
They did also use my interests to teach me. One of the therapists would draw “Sesame Street” pictures, and we would talk about the picture. We would work on sequencing, and I would say what would come next in a story. I found a lot of this fun.
I also went to a trampolining/gym club with home educators. I enjoyed going on the trampoline. I have always found the trampoline has helped to stimulate my mind and keep me calm. I still enjoy going on the trampoline today. My therapists would also help teach me turn-taking by playing games with me, like Pop-Up Pirate, Pairs, Snap, Operation and Buckaroo. I really enjoyed playing these games, and I was learning about turn-taking and teamwork at the same time. I have also found that there are lots of times when being able to play games has made it easier for me to socialize.
They also helped teach me social skills and conversational skills. They would use role-play. Two of the therapists would act like they were having a conversation, and I’d be expected to give feedback on how good their conversation was. I think it is very hard to learn how to understand social interaction. In some ways, I believe the rules I learned during ABA have given me the social rules for talks I give today. It has also helped me to answer questions and talk to people after a talk. Socializing with peers is still difficult for me. I still struggle to talk about subjects that are not of interest to me or to know how to break into a group of people who are talking.
They also worked on multitasking and choice-making, although I still struggle with those things a lot; however, I may be better having to choose than I would have been without it. I still feel anxious in these circumstances, but I used to have a meltdown if put in a situation where I had to make a choice. My therapists helped me to choose by giving me a choice of something I really hated and something I loved. For example — cheese or a curry; I detest cheese and love curry, so making those choices was easier.
I feel I owe a lot to the support I received as a child. However, there are a few experiences I didn’t like. I had one consultant who tried to control my stimming 24 hours a day. My parents refused to cooperate. I’m glad they did. I believe this would have done me a lot of harm. Stimming has its purpose. When I stim, I’m going deep into my own world. I’m reliving certain memories, often with a twist on them, or reliving what I’ve seen on film. I also stim when getting really excited, when I’m focussing on a special interest, or even when I’m processing what’s happened during the day. You could say part of the whole way I think works through these movements.
Stimming should not be stopped. When those on the spectrum have learned to control it all the time, I’ve found it can increase stress and anxiety. I am glad I can control my stimming to some extent in public, because people can be very nasty to or frightened of those who are different. When I was 15, one man thought I was having a seizure and wanted to call an ambulance when he saw me stimming outside a caravan.
Another thing my therapists did which I’m not too keen on was when I was taught about what was considered “cool” and what was considered to be “not cool.” This was at a stage when they were trying to get me interested in things typical kids were into. It seemed like they were trying too hard to make me “normal.” I don’t think that’s a good idea. At the end of the day, those of us with autism are different. That’s who we are, and this should be respected. Is “normal” really the greatest thing we can strive to be? I don’t think so. When helping kids with autism, I believe the emphasis shouldn’t be on trying to make them as “normal” as possible. It should be on trying to teach skills to cope in society while still being different. If we try too hard to be normal, I feel it’s just going to lead to depression and anxiety, because we simply cannot become something we’re not. In my opinion, even if we could become normal, we shouldn’t. Being different isn’t a bad thing, and I’ve found there are a lot of advantages to having autism that shouldn’t be overlooked either.
The “cool, not cool” approach was dropped in the end. When this was dropped, I had another consultant who used my interests to teach me. This was a much better approach for me. Being taught through my interests is probably my most vivid memory from the therapy I’ve had.
If you want to find out more about my childhood, ABA and my life’s story in general, then do feel free to check out my book, “Thinking Club: A Filmstrip of My Life as a Person With Autism.” When I talk about my experiences of ABA and the progress I’ve made, some people do seem to be under the impression that my autism is “cured” and I no longer have it. This could not be further from the truth. I am very much still autistic, and I always will be. It’s a part of who I am as a person. I still have a lot of difficulties, I still have a lot of anxiety, and I still need a lot of support in my day-to-day life. However, it goes without saying that I have made an enormous amount of progress from when I was a young child before I had the ABA therapy.
If I hadn’t had the ABA, I don’t think I would have the same level of control over my anger that I have. I can still feel very angry inside, but I am in control of my actions. I also think I would have very little social skills. I still struggle socially to a significant degree, but I think I would be utterly clueless socially without the ABA. I might struggle more with my senses as well. I still have some sensory issues, but as a child, I couldn’t even walk into a shop because my senses were so heightened. I was helped to cope with this in my therapy. I also don’t think I would have been able to express myself quite as well if I hadn’t had it. I certainly don’t think I’d be a public speaker if I had never had ABA.
I am still in touch with two of my ABA tutors; Donna still supports me to go to some of my talks. I prefer to call her my assistant or associate these days. Annette is now a member of our family. Yes, that’s right, her son married my sister Naomi. I also still email Annette and visit her sometimes; she lives a long way from me now. I was very blessed to have the same people work with me for many years during my childhood.
If you’re a parent and considering ABA for your child, my advice would be to look at your child and consider whether it would be the right approach for him or her. Your child must be respected as a person, and you must not make the mistake of targeting the autism that is in your child. However, if you feel ABA is right for your child, I think it’s important to get the right consultant who’s not trying to “normalize” the child, because there can be consultants who try to do just that. I have heard some adults on the spectrum say ABA ruined their life. But when ABA is done well, I believe a lot of progress can be made as a result of it.
Now, that’s not to say ABA is a good tool for all children with autism, because autism is so diverse, and different techniques help different people. My mum used a lot of the therapy she had done with me to help my father recover from a stroke in 2010. I found it hard that my father made such quick progress when it took me so long to learn everything.
I did also do some brain training programs in my early- to mid-teens, which also helped me. I think I had a happy childhood; I still wish I was in it sometimes. Do I have any regrets? Yes. I wish I’d had superhero and “Les Miserables” banquets. But maybe I can do that with the new autism social group I have started. That would be fun!
Thank you for reading. I hope you enjoyed this article and learned a lot from it.
This article was originally written for autism parent groups.
Image via Contributor.
Follow this journey on Alex’s website.
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