To: ASHA Leader Editor
From: Therapist Neurodiversity Collective on behalf of ASHA CCC-SLP Members
Re: Article in ASHA Leader – Judy Rudebusch Rich, ASHA President-Elect (“Aha moment”)
“He seemed more like a little human ball, than a boy…” “I reached over and pulled his hands down. The other hand went up with more intensity. I pulled the other hand down. Benny got very still and then looked out of his world deep into my eyes. The connection might have lasted two seconds, or it might have lasted forever. That was my moment. I knew I was in a place and a profession that was just right for me.” – Judy Rudebusch Rich, ASHA President-Elect
To Whom it May Concern:
As ASHA CCC-SLPs, we are shocked and dismayed to read in this month’s ASHA Leader that our President-elect’s “aha moment” was when she successfully physically overpowered an Autistic child to extinguish his harmless stimming. In addition to the heartache we felt on behalf of this powerless neurodivergent little one, the disturbing comments from our President-elect confirm our position that ASHA continues to operate as an ableist entity, is completely out of touch with the Autistic communities and their therapist allies, and is in bed with the ABA industry, so to speak, to the great detriment of the neurodivergent we serve, as well as ASHA’s SLPs.
The President-elect’s words, “more like a little human ball, than a boy,” bring to mind the disturbing and stomach-churning comments of Dr. Ole Ivar Lovaas – “The Father of ABA” in ”Psychology Today, 1974 when describing autistic children:
“Autistic children are severely disturbed. People seem to be no more than objects to them. They show no signs of warmth toward others; they do not appear to enjoy being held. They don’t play with other children. Their parents often think that they are deaf because they don’t respond to noise or verbal commands. Sometimes parents think the child is visually impaired because they walk into objects as though they don’t see them, and because they don’t look into your eyes. “
“You see, you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense – they have hair, a nose and a mouth – but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person.”
It is our ethical responsibility as CCC-SLPs to first do no harm to the humans we purport to serve. Indeed, ASHA’s own Code of Ethics requires us as one of the triangles of “Evidence-Based Practices” to listen to and respect “Client/patient/caregiver perspectives,” which ASHA defines as “The unique set of personal and cultural circumstances, values, priorities, and expectations identified by your client and their caregivers.” These perspectives include the Autistic clients and students we serve.
ASHA Leadership appears to be clueless that an ongoing Neurodiversity Movement has been occurring since the 1990s and continues to forge ahead, worldwide, leaving ASHA and the majority of its members in the dark ages with both relevant research and Autistic Culture. Autistic Rights are Human Rights. Autistic people have the right to self-determination, self-advocacy, equitable access and to be their authentic selves. Furthermore, it is time that our ASHA organization finally concedes the ethical violations of neurodivergent human rights surrounding ABA practices. We suggest ASHA leadership read the published report on ABA from The United States Department of Defense (June 2020, TRICARE), as well as study current research which demonstrates that ABA is 1) not effective, and 2) quite harmful to neurodivergent people. (See direct quotes from the Department of Defense Comprehensive Autism Care Demonstration Annual Report 2020, and links to research and articles on stimming in suggested further reading.)
As dues-paying members, we would like to see our President-elect, as well as ASHA leadership at large, who are operating from the position of privileged influence, adhere to their own Code of Ethics regarding EBP and client perspectives and join us CCC-SLPs as we move forward to change our therapy practices to reflect empathy and respect for the people we serve.
Julie A. Roberts, M.S., CCC-SLP
Founder, Therapist Neurodiversity Collective
At this time this email was sent to ASHA, over 79 ASHA CCC-SLPs had signed this letter.
Suggested further reading for ASHA Leadership:
‘People should be allowed to do what they like’: Autistic adults’ views and experiences of stimming
Kapp SK, Steward R, Crane L, et al. ‘People should be allowed to do what they like’: Autistic adults’ views and experiences of stimming. Autism. 2019;23(7):1782-1792. doi:10.1177/1362361319829628
Julie Bascom, Executive Director, ASAN (Autistic Self-Advocacy Network)
THE ART OF STIMMING ]
Applied behavioral analysis has left a legacy of traumatized kids. Why is it still the standard of treatment?
Ethical Concerns with Applied Behavior Analysis for Autism Spectrum “Disorder”
Specifically, we will argue that employing ABA violates the principles of justice and nonmaleficence and, most critically, infringes on the autonomy of children and (when pushed aggressively) of parents as well. Wilkenfeld DA, McCarthy AM. Ethical Concerns with Applied Behavior Analysis for Autism Spectrum “Disorder”. Kennedy Inst Ethics J. 2020;30(1):31-69. doi:10.1353/ken.2020.0000
“The research literature available regarding ABA services predominantly consists of single-case design studies which does not meet criteria for “reliable evidence” under TRICARE standards.”
“…no correlation with rendered hours of ABA services. There does not appear to be a correlation between outcome measures and the number of hours rendered. In other words, the number of hours rendered does not appear to impact outcomes. “
“What can be interpreted with confidence is that the number of hours of ABA services rendered did not have the intended impact of symptom reduction on the PAC scores. This lack of correlation between improvement and hours of direct ABA services strongly suggests that the improvements seen are due to reasons other than ABA services and that ABA services are not significantly impacting outcomes.”
“ABA services do not meet the TRICARE hierarchy of evidence standard for medical and proven care.”:
Based on DHA’s experience in administering ABA services under the ACD, including engagement with beneficiaries, providers, advocates, associations, and other payers, audit findings, current outcome measures results, and ongoing fraud, waste, and abuse cases, continued analysis is required in order to determine the appropriate characterization of ABA services as a medical treatment, or other classifications, under the TRICARE program coverage requirements – to include further research and evaluation of the results, whether BCBAs may appropriately be recognized and treated as independent TRICARE authorized providers of a proven medical benefit, and what authorities are required to add ABA services as a permanent benefit under the TRICARE program – whether as a proven medical benefit or otherwise.”