Therapist Neurodiversity Collective

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“Despite some industry changes in applied behavioral analysis practices and therapy models, ABA practices will always be based upon a foundation of compliance, coercion, and behaviorist principles. It is impossible to practice ABA even gently or playfully, without attempting to control and manipulate a person’s behavior.

The fundamental goal of ABA is compliance with the will of the person in the position of authority, which counters self-determination, undermines self-advocacy efforts, and infringes on human dignity and fundamental human rights.”

– Julie Roberts, M.S., CCC-SLP. (2018). Therapist Neurodiversity Collective

 

Applied Behavior Analysis (ABA)

“In many countries, autistic persons lack access to services which would support, on an equal basis with others, their right to health, education, employment, and living in the community. When available, services are too often far from human rights friendly or evidence-based….

Autistic persons are particularly exposed to professional approaches and medical practices which are unacceptable from a human rights point of view. Such practices – justified many times as treatment or protection measures – violate their basic rights, undermine their dignity, and go against scientific evidence…

Autistics persons should be recognized as the main experts on autism and on their own needs, and funding should be allocated to peer-support projects run by and for autistic persons..”

– The United Nations, Human Rights Office of the High Commissioner (2015)

In February 2023, The Joint Committee on Disability Matters in Ireland published The Report on Aligning Disability Services with the United Nations Convention on the Rights of Persons with Disabilities. In it, they declare:


“…the Committee are aware how behavioural interventionist therapies such as PBS, ABA are medicalised and differ crucially from the principles underlying Speech and Language Therapy (SLT), and Occupational Therapy (OT). Behavioural interventionist therapies are ultimately founded on modifying disabled people’s behaviour to meet goals decided by others; often to conform more closely with neurotypical communication, behaviour and/or norms and therefore the Committee believe cannot uphold the UNCRPD principles of autonomy, dignity, right to identity and freedom from non-consensual or degrading treatment.”

“What most parents don’t know, and what I only know now after encountering both autistic experiences with ABA and following contemporary ABA research, is that autistic children need supports and accommodations, not interventions based on non-autistic child development and conversion therapy. “Early interventions,” and especially ABA, are the exact opposite of what young autistic children need to thrive.”

Why No Child Should Be in ABA Therapy – Shannon Des Roses Rocha, Thinking Person’s Guide To Autism

“Defending ABA as non-harmful and theoretically unproblematic reflects a deep misunderstanding of what is actually considered best practice by many autistic people.”
Dr. Damien Milton (2021)

Dr. Ivar Lovaas (1927–2010) - "a pioneer in ABA"

“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.” –

Lovaas (1974). ”Psychology Today”

“To give her something to be anxious about, she was taken to the shock room, where the floor is laced with metallic strips. Two electrodes were put on her bare back, and her shoes removed.”

“Even more than punishment, patience and tenderness are lavished on the children by the staff. Every hour of lesson time has a 10-minute break for affectionate play. The key to the program is a painstaking system of rewarding the children —first with food and later with approval — whenever they do something correctly. These four were picked because they are avid eaters to whom food is very important. In the first months they got no regular meals. Spoonfuls of food were doled out only for right answers.”

Moser D, Grant A. Screams, slaps, and love: a surprising, shocking treatment helps far gone mental cripples. Life. May 7, 1965: pp 87 – 97.

 

“After you hit a child, you can’t just get up and leave him; you are hooked to that kid” – Lovaas (1974). Psychology Today.

” We know the shocks are painful; we have tried them on ourselves and we know that they hurt. But it is stressful for the person who does the shocking too. You may have used shock successfully with a hundred kids, but you are still apprehensive about it; you always think that maybe this kid will be the exception; maybe you will hurt him and it won’t do any good. But then when you shock him and you see the self-destructive behavior stop, it is tremendously rewarding.”

–  Lovaas (1974). ”Psychology Today”

 ABA and Electric Skin Shock in the 21st Century

One would think the ABA practice of torturing children in the pursuit of compliance and “normalization” would be over, but the Judge Rotenberg Center continues to use painful electrical stimulation devices (ESDs) on human beings to this day, a practice which the United Nations has deemed torture.

The Association for Behavioral Analysis International (ABAI) continued to feature JRC as a presenter at their annual conferences as late as 2021, and 2022. In November 2022, the ABAI put out a position statement,” we strongly oppose the use of contingent electric skin shock (CESS) under any condition,” after (only) 65% of members voted to pass it. (Diament, 2022). Apparently, 35% of BCBAs still don’t have a problem with painfully shocking disabled people.

In March 2020, the FDA banned the use of Electrical Stimulation Devices for Self-Injurious or Aggressive Behavior, but the “U.S. Court of Appeals for the D.C. Circuit found that the ban was beyond the FDA’s authority as it was a regulation of the practice of medicine.”  (Morrison, 2021)

The Shocking School: The Judge Rotenberg Center, a Massachusetts school, still uses electric shock therapy to punish disabled students. How can an entire field of mental health accept this as fine?  Summers, J. (2021, December 22). The Shocking School. Boston Review. 

What’s happening at the Judge Rotenberg Center? #StopTheShock. ASAN (Autistic Self Advocacy Network)

Diament, M. (2022, November 18). Behavior Analysis Group Votes To Oppose Electric Shock Treatment. DisabilityScoop

Morrison, H. (2021, July 12). FDA’s ban on the use of electric shock devices used at Judge Rotenberg Center in Massachusetts overturned. MassLive.

What do Autistic People Think About ABA?

“Autistic adults remember traumatic events from applied behavior analysis, do not believe that they should be made to behave like their peers, gained some benefits but suffered significant negative long-term consequences, believe that applied behavior analysis is an unethical intervention, and recommend that applied behavior analysis practitioners listen to autistic people and consider using interventions in place of applied behavior analysis.”

Anderson, L. K. (2022). Autistic experiences of applied behavior analysis. Autism, 0(0). https://doi.org/10.1177/13623613221118216

Investigation of the long-term impacts autistic adults experienced from childhood participation in Applied Behaviour Analysis (ABA)

  • Behaviorist methods create painful lived experience
  • intervention was contingent on repeating certain tasks in order to avoid punishment
  • Trained like an animal to perform
  • Was misunderstood and communication was misinterpreted
  • Erosion of self and self-identity, “shutting down the real autistic me” “pretending to be someone else”
  • Trauma to mental health and well-being (PTSD, chronic anxiety, self-rejection and loathing)
    Lack of self-agency within personal interaction (left voiceless and mute, “the focus on compliance made it harder for me to say no to people who hurt me later”)

“I am no longer capable of being myself around others. Outside of my own control I observe them and make a person that they will most likely enjoy. I actively change myself around others to a staggering degree”

“ABA made it much harder to make friends, because I was spending so much time trying to pretend to be someone I’m not that I could never really connect to people”

“I’ve turned into an anxious person afraid of consequences (good or bad). And I got depressed and lost my interests which were used as reinforcer.”

“Nobody can see the emotional and mental scars that have been caused by the trauma and damage done by ABA”

Robinson, Anna & McGill, Owen. (2020). ‘Recalling Hidden Harms’: Autistic Experiences of Childhood Applied Behavioural Analysis (ABA). Advances in Autism. ahead-of-print. 10.1108/AIA-04-2020-0025.

  • Nearly 90 percent of Autistic people and almost 60% of non-autistic professionals disagreed with the use of ABA on autistic children.
  • Over 70% of Autistic ABA recipients disagreed with its use. 62% of them strongly disagreed with the use of ABA.
  • However, 45% of parents and caregivers of recipients of ABA  agreed with the use of ABA on autistic children, vs 35% who did not agree with the use of ABA on autistic children

 

Bonello, C., “Results and Analysis of the Autistic Not Weird 2022 Autism Survey.” Autistic not weird. 23 March, 2022. 
Images used with permission.

“Autistics for Autistics opposes ABA in any form, because ABA is founded on a dehumanizing, segregationist approach to autistic people. We understand we could make ourselves a lot more popular by stepping back from this issue, but in good conscience we can’t — and we never will.

Reason 1: Autistics who have undergone ABA are more likely to suffer from PTSD. The risk of suicidality is also significantly higher for ABA participants.
Reason 2: ABA training makes children vulnerable to abuse throughout their lifetime.
Reason 3: Young children who undergo IBI/ABA are denied a normal childhood.
Reason 4: Autistic people do not like or want ABA.
Reason 5: There are better ways than ABA — but ABA organizations lobby for dominance.”

– Read their entire ABA position on A4A Ontario (Autistics for Autistics Ontario)

“One of the main interventions for autism is Applied Behavioral Analysis (ABA). ABA is a model of intervention focused on changing the external behaviors of autistic children, with the goal of making an autistic child look and act nonautistic. Ethical concerns have been raised within the autistic community as to how ABA and similar practices serve to “normalize” autistic children, via teaching children to hide their autistic traits. Hiding autistic traits has been linked to worse mental health outcomes and increased suicidality in autistic adults. Furthermore, these practices often “normalize” autistic children at the expense of promoting key life skills, self-determination, and self-esteem.” “We argue that “new ABA” is no more acceptable or ethical than old ABA, even if it is less brutal.”

For Whose Benefit? Evidence, Ethics, and Effectiveness of Autism Interventions. Autistic Self Advocacy Network. (2021, December).  

“ASAN’s objection is fundamentally an ethical one. The stated end goal of ABA is an autistic child who is “indistinguishable from their peers”—an autistic child who can pass as neurotypical. We don’t think that’s an acceptable goal. The end goal of all services, supports, interventions, and therapies an autistic child receives should be to support them in growing up into an autistic adult who is happy, healthy, and living a self-determined life.”

 – Julia Bascom, Executive Director, Autistic Self Advocacy Network (ASAN)



 

Parents call for action on controversial autism therapy ABA. (2023, May 25). DutchNews.

“Parents of children with autism are calling on the government to ban a controversial treatment known as ABA, which some have compared to gay conversion therapy, Trouw reported on Thursday. So far 2,500 parents have signed a petition calling for action and the LBVSO, an organisation for children in special education, says it has received 450 complaints about the programme…” 

 

ABA is a multibillion-dollar industry, preying upon the concept of “autism as commodity”…

The mismeasure of Misha
Summers, J. (2022, November 28). The mismeasure of Misha My son broke free from the most common therapy for autism… Boston Review

Father writes about how he and his son finally broke free of the grip of Applied Behavior Analysis
COFAR Blog (2022, November 25) COFAR (Massachusetts Coalition of Families and Advocates, Inc.) 

Private equity is the biggest player in a booming autism-therapy industry. Some therapists say the ‘money grab’ is hurting the quality of care
Fry, E. (2022, January 29) Private equity is the biggest player in a booming autism-therapy industry. Some therapists say the ‘money grab’ is hurting the quality of care. Fortune. 

As Private Equity Comes to Dominate Autism Services… It’s time to ask ourselves how long we want to keep rewarding bad behavior.
Summers, J. (2021, April 2). As private equity comes to dominate autism services… The Nation.

The role of private equity and lobbying in ABA funding: Talking with investigative journalist John Summers
Borden King, A. (Ed.). (2021, August 24). The role of private equity and lobbying in ABA funding: Talking with investigative journalist John Summers. Noncompliant – The Podcast.  

Autism, Inc.: The Autism Industrial Complex
Broderick, A. A., & Roscigno, R. (2021). Autism, Inc.: The Autism Industrial Complex, Journal of Disability Studies in Education (published online ahead of print 2021). doi: https://doi.org/10.1163/25888803-bja10008

There are many ethical and human rights concerns regarding the use of ABA on human beings.

This includes the use of ABA-derived therapy models such as Naturalistic Developmental Behavioral Interventions and relationship-based therapy models paired with ABA on non-consenting human beings.

We are disturbed that ABA is used on pediatric, adult, and elderly populations without consent from the humans on the receiving end. 

We are horrified that the BACB condones the use of punishment in the treatment of neurodivergent, autistic, and intellectually disabled humans. We want the public to understand that The Behavioral Analysis Certification Board’s Ethics Compliance Code has published guidelines for the application of aversion procedures (punishment) that certified ABA providers must follow when treating clients.  We believe the use of punishment to manipulate human behavior is a violation of human rights.

Ethical, empathetic, and respectful practices would never encompass the following:

  • Training human behavior compliance through rewards, such as the earning of snacks, checkmarks, behavior charts, stickers, and access to favorite or personal items and objects, activities, or similar.
  • Withholding attention or affection, food, drink, activities, or objects, personal belongings, favored hobbies, etc. until compliance is gained, or the therapy outcome is achieved.
  • Humans train other humans as they would whales, chickens or dogs. 
  • Compliance training, which sets up children for current and future victimization*, “specifically, more property crime, maltreatment, teasing/emotional bullying, and sexual assault by peers.”


* Weiss JA, Fardella MA. Victimization and Perpetration Experiences of Adults With Autism. Front Psychiatry. 2018;9:203. Published 2018 May 25. doi:10.3389/fpsyt.2018.00203

Trauma-informed, research-based alternatives to ABA and behavior-based treatments for autistic and otherwise disabled people:

Speech-Language Pathologists and Speech-Language Therapists have the unique, necessary training and education in anatomy, physiology, neurology, and neurological based conditions, language development, and motor development to address self and/or other-harming client behaviors through the investigation of the underlying causes. Trained SLP/SLTs and their SLP-Assistants teach clients to self-advocate through functional communication, thereby ensuring that they retain the inherent human right of self-determination. 

Occupational Therapists focus on a person’s ability to function independently rather than the “function” of any particular “behavior”. What guides the practice of an Occupational Therapist is what is of most importance to the client – personal goals, hobbies, and occupations. Occupational Therapists teach the skills for the job of living, using a broad knowledge-base of anatomy and physiology, neuroscience, psychology, and activity analysis to help people achieve their highest level of independence with the activities of daily living that are most meaningful to the client. Additionally, and importantly, occupational therapists address client environments, especially the social, physical, and policy aspects, to promote social participation and inclusion.

Reference
Shifting Focus From Impairment to Inclusion: Expanding Occupational Therapy for Neurodivergent Students to Address School Environments

Yu-Lun Chen, Kristie Patten; Shifting Focus From Impairment to Inclusion: Expanding Occupational Therapy for Neurodivergent Students to Address School Environments. Am J Occup Ther May/June 2021, Vol. 75(3), 7503347010. doi: https://doi.org/10.5014/ajot.2020.040618

Therapist Neurodiversity Collective believes that therapists should listen to and respect Autistic and other Neurodivergent voices. A neurodivergent-affirming therapist does not “treat autism.” Coercing a neurodivergent person to “normalize” through ABA and/or other masking therapy models is disrespectful and can cause substantial trauma.

We recommend that families seek out therapists who commit to providing therapy in manners that uphold the dignity of the individual while promoting self-determination. 

 

You might not know your therapy program is ABA...

  • “Play-based” ABA
  • ABA + relationship-based therapy (a therapy framework where ABA is used in conjunction with DIRFloortime, SCERTS, Hanen, or similar.)
  • Verbal Behavior (VB)
  • VB-MAPP
  • The Lovaas Approach
  • Interview Informed Synthesized Contingency Analysis (IISCA)
  • Relational Frame Theory (RFT)
  • Pivot Response Treatment (PRT)
  • Natural Language Paradigm ® (NLP)
  • Learning Experiences: An Alternative Program for Preschoolers and Their Parents (LEAP)
  • KASPAR
  • Early Start Denver Model (ESDM)
  • Discrete Trial Training (DTT)
  • Functional Communication Training (FCT)
  • Gemiini Systems
  • Incidental Teaching
  • Early Intensive Behavioral Intervention (EIBI)
  • Intensive Behavioral Intervention (IBI)
  • ABA Derived “Errorless Learning” Therapy Models
  • Intensive Behavioral Intervention (IBI)
  • Joint AttentionSymbolic Play, Engagement, and Regulation (JASPER)
  • PECS®
  • Positive Behavior Support (PBS)
  • Positive Behavioral Interventions and Supports (PBIS)
  • PCIT – Parent-Child Interaction Therapy
  • The PEERS® program
  • Project Improving Parents as Communication Teachers (Project ImPACT
  • TAGTeach®
  • TEACCH® 
  • Son-Rise

ABA Research

“Research in ABA continues to neglect the structure the autistic brain, the overstimulation of the autistic brain, the trajectory of child development, or the complex nature of human psychology, as all of these factors were ignored in the response and are ignored in ABA practice itself. Providing a treatment that causes pain in exchange for no benefit, even if unknowingly, is tantamount to torture and violates the most basic requirement of any therapy, to do no harm. “

Sandoval-Norton, A.H., Shkedy, G. & Shkedy, D. Long-term ABA Therapy Is Abusive: A Response to Gorycki, Ruppel, and Zane. Adv Neurodev Disord 5, 126–134 (2021). https://doi.org/10.1007/s41252-021-00201-1

June 25, 2020: Report to the Committee on Armed Services of the Senate and House of Representatives on TRICARE and ABA:

Two well-respected medical literature review services, external to DHA, continue to find the evidence for ABA services (Intensive Behavior Intervention) for the diagnosis of (Autism) is weak, noting, “An overall low-quality body of evidence mainly from poor-quality studies suggests that Intensive Behavior Intervention (IBI) improves intelligence or cognitive skills, visual-spatial skills, language skills, and adaptive behavior compared with baseline levels or other treatments.

“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. There are still methodological concerns limiting the strength of the research such as identified characteristics of children (including symptom severity), rendering providers, and types of treatment for positive outcomes. These limitations include “dose-response” (frequency, intensity, and duration), treatment fidelity, few studies which use a control group, few longitudinal studies which demonstrate long-term effectiveness, and no replication of similar in well-designed studies.”

Annual Report on Autism Care Demonstration Program for FY 2020 

“Reflections from 10 participants were indicative of a predominantly detrimental impact of ABA. Reflections gave rise to a core theme ‘‘recalling hidden harms of childhood experiences of ABA’’. Outcomes are discussed in relation to the impact on autistic identity, current research and progressing understanding of the impacts of early intervention from the autistic perspective.”

McGill, O. and Robinson, A. (2021), “Recalling hidden harms”: autistic experiences of childhood applied behavioural analysis (ABA)”, Advances in Autism, Vol. 7 No. 4, pp. 269-282. https://doi.org/10.1108/AIA-04-2020-0025

“This article discusses the prevalence of (Autism) with specific regard to the most ubiquitous current treatment, Applied Behavior Analysis (ABA). A discussion of some of the issues with the underlying theory of ABA in its current application is conducted, especially with regard to “lower functioning” and nonverbal autistic individuals; namely, the curtailing of soothing “stimming” behaviors, operant conditioning, behaviorist principles that research has continued to prove it is not apt for usage with autistic individuals, as well as the unintended but damaging consequences, such as prompt dependency, psychological abuse and compliance that tend to pose high costs on former ABA students as they move into adulthood.”

Sandoval-Norton, Aileen & Shkedy, Gary. (2019). How Much Compliance is Too Much Compliance: Is Long-Term ABA Therapy Abuse?. Cogent Psychology. 6. 10.1080/23311908.2019.1641258.

This paper has both theoretical and practical ambitions. The theoretical ambitions are to explore what would constitute both effective and ethical treatment of (Autism). However, the practical ambition is perhaps more important: we argue that a dominant form of Applied Behavior Analysis (ABA), which is widely taken to be far-and-away the best “treatment” for (Autism), manifests systematic violations of the fundamental tenets of bioethics. Moreover, the supposed benefits of the treatment not only fail to mitigate these violations, but often exacerbate them. Warnings of the perils of ABA are not original to us-autism advocates have been ringing this bell for some years. However, their pleas have been largely unheeded, and ABA continues to be offered to and quite frequently pushed upon parents as the appropriate treatment for autistic children. Our contribution is to argue that, from a bioethical perspective, autism advocates are fully justified in their concerns-the rights of autistic children and their parents are being regularly infringed upon. 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. PMID: 32336692.

When disability is defined by behavior, researchers and clinicians struggle to identify appropriate measures to assess clinical progress. Some choose the reduction or elimination of diagnostic traits, implicitly defining typical appearance as the goal of service provision. Such an approach often interferes with more meaningful, person-centered goals; causes harm to people with disabilities; and is unnecessary for dealing with traits that are intrinsically harmful or personally distressing, such as self-injury.

Dawson M, Fletcher-Watson S. When autism researchers disregard harms: A commentary. Autism. 2021 Jul 22:13623613211031403. doi: 10.1177/13623613211031403. Epub ahead of print. PMID: 34291651.

“Neurodiversity is best considered a lens through which to evaluate the goals of autism interventions. Does an intervention seek to modify a given trait solely because it is autistic? Or does it proceed more modestly, only targeting that which is intrinsically harmful? This approach is consistent with addressing self-injury or promoting communication. Just as surgically shaping the eyes of people with Down syndrome to look normal is now considered barbaric, neurodiversity requires us to recognize as unethical measures to enforce typical appearance solely to avoid stigma. Suppressing autistic traits in order to promote typical appearance is problematic regardless of level of impairment, while reducing personally distressing or harmful behaviors or developing skills is not.”

AMA J Ethics. When Disability Is Defined by Behavior, Outcome Measures Should Not Promote “Passing” 2021;23(7):E569-575. doi: 10.1001/amajethics.2021.569.

The Department of Defense reported to Congress on Oct 25, 2019, about Comprehensive Autism Care that after one year of ABA treatment, 76% of those with autism had no change in symptoms, and 9% WORSENED by more than a full standard deviation. This reaffirms Navy Capt. Edward Simmer, Chief Clinical Officer of the Tricare Health Plan, stated in November 2018 that the effectiveness of applied behavioral techniques for autism remains unproven.

OFFICE OF THE UNDER SECRETARY OF DEFENSE – October 2019 TRICARE-Autism-Report

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