Autism and ABA
There seems to be a lot of buzz these days about autism and ABA, and I remember, as a new parent, being confused about what to do with this new diagnosis. I can’t speak to anyone else’s experiences or their views on ABA then or now, but what I can do is share mine, having walked this path for nearly 25 years, now with an autistic adult son. Maybe it’ll help someone hear the experience of a family who has been living and loving autism (and ABA) for many years.
If you might feel triggered by the discussion, move along, move along. It's all good.
Our Beginnings with ABA
We started as consumers of ABA 23 years ago when our son was diagnosed with autism. I was very involved in his therapy from day one. We sought out a provider who fit with our family, so we didn't just hand our kid off to some rando. We were thoughtful about it and wanted the person who fit us best. We also used Speech, OT, PT, early intervention, and medical professionals. It was a great team! I always knew what they were working on, and I had a voice in what those goals were. Always! I was respected as his voice until he gained one, and then HIS voice guided many of his goals. We focused on skills that would provide him that voice most, so lots of speech and language goals. We also focused on social emotional and behavioral goals that would allow him more and better access to peers, positive social experiences, and access to his environment. We included goals that would help him learn alongside his non-disabled peers to the biggest extent possible.
And how did we work on these goals? We provided him more access to preferred things, activities, and people more openly and readily as he learned and mastered new skills. Yup, we did that. And when he met a challenge or something hard for him to do, we'd break it down into smaller chunks and teach him. There were even (gasp!) consequences when he did something society wasn’t going to look kindly on (challenging behaviors). Also called “good parenting.” Sometimes we even made him do things he didn't want like brush his teeth, clean his room, use kind words, apologize, be polite and so forth. Rough stuff. We didn't spank him, we didn't yell at him, we didn't let him do dangerous things. We did let him stim, engage in preferred activities, be silly, pursue his interests, and develop who he wanted to be.
He was in semi-intensive ABA (maybe 10-20 hours a week) from the age of two until the end of elementary school, so close to 10 years. From that time on, he was in a once-a-week social group for another few years. By the time he was in high school, he was actually hired at the ABA clinic (that I then owned) as a tutor. He didn't do traditional ABA sessions, but he participated in social groups and play sessions with younger kids as a sort of “older brother” or mentor. He was able to engage with them in a special and unique way because he understood them (and Pokémon!). He was an asset to everyone who worked with him.
Our Adult Autistic Son Today
Fast forward to now. He is now 25, lives on his own, and has a job in software engineering.
He's still quirky as hell! He's still autistic! It's wonderful! He lives alone and is happy that way. He wants to meet someone (with a capital S), but it'll be in his own time and way. He still stims, has speech disfluencies, likes things to be the same and structured in his life, has a limited eating repertoire, and so on. So what! He's happy, he's independent, and he's living his truth.
ABA has been a blessing in our lives. It has helped our son blossom into the wonderful young man that he is today and living an independent life and free to be who he wants to be.
I recently asked my boy about his views on ABA. I was careful to word it in such a way as to not try to persuade him to say a certain thing. I truly wanted to know about his experience and feelings. He said he doesn't remember a lot of when he was younger but that, “Everyone was caring.” He may not have strong memories, but I do, and I remember that his therapists thought he was fun and charming and quirky and they celebrated his successes and brainstormed with us his challenges and how they could help. We STILL, after all these years, have regular contact with a number of them.
To this day, one of my boy’s most enduring friends is someone he met at church during his “hard” years. He knew he had autism, he participated in therapy, he was kind and protective of my boy at school and church. Today, that friend is married with a kid, and I overheard a phone call after the birth of his daughter when my boy called to congratulate him. It brought tears to my eyes.
My Truths
I believe that ABA, OT, speech, counseling, etc. are personal medical decisions that should be between a family and their doctor. If you want to pursue ABA, go for it! Follow your gut and find a provider that you feel good about, someone who will love your child and help them become the best version of themselves with new tools that help them along the way. If ABA isn’t for you, great! There are lots of other options! And many of these options are not mutually exclusive. You can do ABA and Speech and OT and medical and naturopathic medicine if you want. One, all, or none of the above.
ABA gave my boy a childhood he would not have otherwise had if he had been left to his own interests and desires. We did push him outside of his comfort zone. We did have high expectations for him. But we did that because we recognized his potential and how far he could go with a little nudging.
ABA didn’t try to change him, but it helped to shape him. Give me a lump of clay, and I can make a little better lump of clay. Give a lump of clay to a sculptor, and wah-lah! The statue of David! My artists were his ABA providers, speech therapists, OT, special education teachers, and us! And we were (and still are) all his greatest cheerleaders!
There is a recent meme going around that says, “A child with autism spends hours being taught how to interact with others. Why don’t we spend time teaching those without autism how to interact with them?” I absolutely agree with this. I worked with many classrooms and small groups and friends' families doing just this. BUT, I also worked with my boy to make it as easy as possible for him. We do both. Just like we teach our child to stop at the street and look both ways before stepping out, we ALSO teach the people driving the cars to use their freaking eyes and be mindful of their surroundings!
7 statements we, as an ABA community, should say
- I will LISTEN to autistic voices who speak of their own experiences. I will also LISTEN to family members who have to be the voices of their loved ones. I will use that to inform my decision-making going forward to improve.
- I will stay up to date on the latest research and always try to do better with more information.
- I will treat everyone with respect and dignity and expect the same in return.
- I will work to provide services for not only young children but teens and adults, those who can and those who cannot speak independently, so that my knowledge base is as large as possible.
- I will be mindful of different cultural norms and treat families ethically and with dignity that aligns with their family values.
- I will see any person not only as who they are today but who they can be and help them reach their goals.
- I will treat anyone I work with as if they were a member of my own family.
I had my 25-year-old son read this before I finished to be sure I was respectful of his views. He said, “Yeah, that sounds about right.” That’s probably the best endorsement any parent can get from a young adult child! He’s pretty OK. 🙂
By the way, ALL the pictures here were taken during therapy all those years ago.
