How a therapy once seen as a victory for autistic kids has come under fire as abuse

Whyy.org ^ | October 22, 2020 | Liz Tung

[Morgana]

When parents first heard about Applied Behavior Analysis (ABA) in the 1990s, it felt like a lifeline — for both them and their autistic kids.

ABA was an intensive therapy based around a system of rewards and punishments designed to change children’s behavior; through repetition and consistent reinforcement, good behaviors could be formed, while undesirable ones were eliminated.

The therapy was individualized and time-consuming — to the tune of 40 hours a week — and it needed to be delivered early in a child’s development.

Suddenly parents were seeing positive results. For some, it offered the promise of normalcy for their kids; for others, the humbler goal of making their family lives more manageable.

It was also expensive — so parents lobbied to have it covered by insurance or schools. By the 2010s, ABA became a standard treatment for kids with autism.

But over the past few years, that first generation of kids to receive intensive ABA has grown up — and they’re telling a different story.

Instead of being a key that unlocked their freedom — and that unlocked their brains from the “confines” of autism — many have criticized ABA as harmful and even abusive, calling it “conversion therapy for autistic people.”

ABA practitioners and experts have defended the therapy, saying that they’ve seen major changes for the better, and that the progress it offers outweighs its potential for damage. But self-advocates aren’t convinced — with some saying that, with other therapeutic options available, there’s no reason to keep ABA at all. Maybe, they say, it should be scrapped altogether. Maybe it’s simply rotten to the core.

[MeganC]

I don’t remember when it started but I was almost thirteen when it ended. From ten to thirteen it was just once every three months or so. Before that was five days a week.

[Tacrolimus1mg]

My best friend’s son has level 2 Autism. He will never live alone and will always depend on my best ladyfriend and her husband for everything. He’s seven and is still potty training, on top of communication issues thanks to having had hearing difficulty until he was a toddler. He still speaks his own language (which we call, “Axican”), although with speech therapy he’s getting a lot better.

Maybe high-functioning kids can benefit from some form of this, but we reward and punish children for their behaviors every day to varying degrees and results. It’s how people learn, but kids who are farther into the spectrum won’t really get a lot out of the intense version of this, I don’t think. My friends’ son has benefitted more widely from longer-term, patient reinforcement of preferred behaviors.

Autism literally translates to, “Abnormal condition of oneself”, leaving some unable to understand hardly anything beyond their own needs and desires, although it depends on the person. It’s why level 3 kids tend to isolate and don’t like social interaction - it’s just overwhelming.

[Conservative4Life]

I have a young man whose daughter was having issues in school. The school said it was autism /ADHD etc and that she MUST be medicated to attend school. They transferred to a school closer to work. Shockingly enough, a school teacher asked the parents a question and then indicated the childs problem was a hearing issue and not ADD, ADHD nor autism. Gave them the number to a really specialized ENT and the discovery of a hearing problem that saved the child from years of drug abuse for a situation that can’t be medicated. Their beautiful little girl had to wear special noise canceling headphones for one of her ears because she can’t (as of yet) filter out and coordinate sounds. She hears things seperately in each ear.

[Sacajaweau]

Happens much to often. My pediatrician was wonderful. I remember him hanging up the phone...and saying...damn Italian mothers...the kids puking his guts...but momma says manghe manghe..

[chronicles]

Thank you for the first hand information.