Therapy · Advocacy · Education
I am used to my stuttering and I wish everyone else would get used to it too. My reactions and my feelings about stuttering are relative to how you, the listener, react. I am only uncomfortable because you are uncomfortable. I am uncomfortable FOR you.
But, training the autism out of an autistic person is neither ethical nor accepting of neurodiversity. Deficit-driven clinicians continue to attribute any Autistic social difference as “deficient” but flat out ignore the fact that social communication reciprocity is a two-way street. Nothing about Social Skills Training is neurodivergence-affirming therapy. Absolutely nothing.
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”…
I was called “unethical” by a professional colleague today.
The reason may surprise you—I said “ABA is abuse”. My peer was naturally taken aback because they are an SLP-BCBA and “would never dream of abusing a child.” I always find this rebuttal interesting because we usually don’t hear about people walking around admitting to abusing people; even overt predators somehow convince themselves that they are helping their victim. The sanctimonious SLP-BCBA told me that it was the “old ABA” and not “new ABA” that was harmful, and then only a small fraction of the time. She accused me of “throwing the baby out with the bathwater” (I still don’t really understand how this idiomatic expression applies here) and she further went on to insist that there is “no way ABA could cause PTSD in people with Autism.” (She really meant “Autistic people,” I am sure.)
“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..
Today in a virtual Zoom therapy session, the parent asked me why I don’t use PECS® in speech therapy (with non-speaking or minimally speaking Autistic children). After watching her child laugh, dance, and have fun during therapy, after watching them imitate action verbs, and spontaneously communicate a desire, spontaneously point to my assistant and me on the screen, and smile at us all, it became clear to this parent that there are different kinds of therapy sessions. This kind isn’t all about compliance.
“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.
Our autistic female students are constantly mimicking and copying behaviors of peers so they can hide their autism. We, as clinicians, teach them to do this because we were taught that autism must be hidden and masked through the therapy we provide. We are licensed, credentialed ableists, “therapizing: our autistic students to learn to be in a constant state of making in order to be acceptable, to be worthy, to be liked.
It is so important that we start with the presumption that the person is a learner! Learning takes time and sometimes a good amount of patience. Always presume they are on their way to developing competence in learning this new language.
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?
As a Speech-Language Pathologist (SLP), I often find myself trying to explain what I do. Our scope of practice is broad and not well understood by the general public. As an SLP specializing in feeding disorders, my work is even harder to explain! To educate the public about what SLPs (and Audiologists) do, the month of May has been designated as Better Hearing & Speech Month.
This letter to the ASHA Leader Editor is being circulated for signatures from speech-language pathologists who share the expressed concerns regarding the article “Building Working Relationships With Applied Behavior Analysts” that appeared in the April 2020 issue of the ASHA Leader. The letter is sponsored by the Speech-Language Pathology Neurodiversity Collective (SLPNDC) and authored by Therapy Chair Amy Lustig, PhD, CCC-SLP.
Not only does ABA pose ethical issues that must be considered, but its efficacy is also questionable. The US government conducted outcome measures under the new T2017 TRICARE contracts and found that “76% of TRICARE beneficiaries in the ACD (Autism Care Demonstration) had little to no change in symptom presentation over the course of 12 months of applied behavior analysis services, with an additional 9% demonstrating worsening symptoms” (James N. Stewart, Assistant Secretary of Defense for Manpower and Reserve Affairs, 10/25/2019).
Beginning in around the year 2000, the field of Applied Behavior Analysis (ABA) has included Traumatic Brain Injury (TBI) among their ever-increasing scope of practice, claiming that ABA is “one of the most effective treatments for managing mood, behavioral and other mental disorders associated with brain damage”.3 ABA, in its simplest form, treats the behavior associated with TBI, rather than treating the underlying neurological reasons for that behavior.
Terrifyingly, ABA has infiltrated our healthcare system, schools, military, hospitals, and nursing homes. But you wonder, how can you even tell if someone is brainwashed? Here are common symptoms that you or someone you love has been brainwashed:
Wasted years upon years of endlessly drilling autistic children and adolescents to memorize and parrot “appropriate” rote phrases for specific social situations will not lead to their peers perceiving them as more likable. Social skills training is not a “cure” for autism despite what the ABA industry would like for us all to believe. All “social skills training’ does is to teach autistic people how to mask their autism. And the potential harms of masking (exhaustion, anxiety, depression, frustration, decreased self-esteem suicidal ideation) are significant.
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