I will raise my hand in shame. As a clinician, I have not always considered the effect that the words I choose. My reports were full of “impaired communication skills”, “limited ability”, “low-level skills”. And I felt quite free to use these labels because my clients would not be the ones to read my reports. If my report was directed to my client, the language would be different. So at least on some level, I recognised how negative these labels are. Yet I used them about people who as speech and language therapist I truly care for.
And then suddenly my world changed. And with my world my perception changed too.
Over the last year my family have all received the label of “Autistic Spectrum Disorder”…
Rebuttal to critique of “ABA is NOT Effective: So says the Latest Report from the Department of Defense”
“The DoD/TRICARE report isn’t a study in any real sense of that word.” This is FALSE. In fact, they included 3794 participants who had received at least 18 months of ABA services; 2,183 from the eastern region of the United States, and a replication in the western region of the United States with 1,611 participants. As such it is not merely the largest study of the effectiveness of ABA, it is the only large-scale test of ABA . And they determined that ABA services do not meet the TRICARE hierarchy of evidence standard for medical and proven care..
“They used food deprivation in my program and they made us pair up and do it to each other. I feel incredible guilt over this.
Every morning I’d cut up a peanut butter and jelly sandwich into as many pieces as possible. Each piece was like a little bigger than an M&M.
Then I’d be told to force this non-verbal Autistic boy to do behaviors for each piece of the sandwich. He’d cry, hit his head in frustration, and say “hungry” which was one of like four words he could use.
I have no words to describe how bad I feel about being forced to do this as a child. If he didn’t “behave” he’d get no food and he’d go hungry.
He and the rest of us were expected to perform like trained circus animals for basic rights, like the ability to go to the bathroom.”
My journey to realising that I was autistic is similar to that of many women, in that I was placed in the mental health system as a child. For the next 15 years, I was given various diagnoses – one of these being Borderline Personality Disorder (BPD). My sensory and emotional difficulties were pathologised and misdiagnosed. What we know now is that there is a multitude of evidence showing how often autistic girls and women are misdiagnosed. But, that’s not what this blog is about.
With 3,794 participants, this is the largest study ever conducted of ABA effectiveness. The 31-page report entitled, “The Department of Defense Comprehensive Autism Care Demonstration Annual Report 2020” concluded that “ABA services are not working.”
When I first considered the possibility that I may be autistic, I thought the only missing piece was difficulty with social communication. I understood topic maintenance, turn-taking, figurative language, sarcasm, small talk, and the fact that no one actually wants a real answer when they ask how you are doing. I also knew that I hated small talk, talked about things I had no interest in for the sake of being social and polite, practiced responses in my head before saying them out loud, and had more difficulty expressing ideas verbally than in writing.
My mom is Puerto Rican and was raised in a strict Catholic household. My father is from New Jersey and was raised in a Jewish household. My mom moved to the states when she was in her twenties, met my dad, got married, and then they had me.
“Good job!” is a phrase used frequently during treatment sessions with autistic children. What message does a child receive from hearing, “Good Job!”? We hope they hear our interest, encouragement and approval. However, when “Good Job!” becomes a habit, is it still successful in conveying this meaning? Or, does it simply signal that the adult is in control, with specific goals in mind and is directing the child towards those behaviors, regardless of the child’s intention? Can frequent “Good Job!” responses undermine a child’s initiative, creativity and broader learning? Does it interfere with a more robust engagement?
Now let’s talk about one of the recent episodes, “The Reckoning.” There’s a loving montage of a character Kuiil rehabbing a droid, named IG-11, who’d been killed. Kuiil rebuilt the droid from scratch after “Its neural network was almost completely gone.” He had to piece IG-11 together, which may be a little beyond our day-to-day job, but the recovery process is certainly something many of us speech-language pathologists have participated in.