Recently, in the world of Applied Behavior Analysis research, I read a paper where autistic children ages two to four were having speech enforced. The children’s loved items were only given to them for a short time if those children make the right spoken word-sound—on command.
I had questions:
- Where, in this paper, was evidence that the team have planned for, assessed, and written up any adverse effects or long term harms? I could find none, which unfortunately is common in ABA papers.
- Where is the long-term “success” data? Was this leading to an actual quality of life change, and if so, which autistic people agreed with that aim?
- Where is the discussion of the ethics of this intervention on children that young?
- How did the tiny children signal that they wanted this to stop, if distressed, and have this respected? It didn’t say.
- Were the team aware that forcing a child to develop faster than their brain can handle can be harmful? That many autistic children naturally take longer to develop speech, with or without enforcement?
- Were the team aware that nonspeaking people exist, are valued, and that AAC technology and sign language exist?
- Were the team aware that taking away loved items from autistic individuals can be traumatic for them? The children had their loved items only given back if they complied.
This informal Twitter poll had nearly 1,000 votes from autistic people:
Most voted that such a scenario would be traumatic for them. Yet, ABA is believed not to involve punishments. Perhaps because ABA teams haven’t asked autistic people if the team’s actions are punishing them. That’s what happens if a group of researchers never think to involve autistic people in design and delivery of research.
- Did the team consider that making a sound is not the same as understanding language, or knowing how and when to use a word? One person making sounds is not communication. I was nonspeaking for social communication for the first ten years of my life. Yes, I could mimic word sounds. I had no idea what they meant or how to use them in meaningful ways. That’s not communication.
- Where is the involvement of autistic people in this trial?
- Of great importance, are ABA enforcers qualified speech and language therapists? No, they are almost always not. In fact, in settings in some areas, junior ABA team members are hired by parents after no training at all, before working with a child. They don’t need to even meet an autistic child before commencing paid work with them, or know what autism is. Supervision by anyone with more experience might happen, but this may be infrequent, and the supervisor is never tested on whether they understand autism.
Should we be concerned? I believe we should. Our children only get one childhood, and they deserve properly qualified and properly experienced professional teams. Teams that consider autistic ways of communication, ethics, human rights, and potential harms very carefully indeed. Teams led by and with autistic specialists and researchers, who can advise on authentic, effective, kind, collaborative and meaningful outcomes.
It’s not good enough that some teams are using methods that may traumatise children, force them to make sounds before they are ready, and not even check for any harm to the child afterwards.
Ask good questions. Always.
Thank you for reading.