Dear Minnesota Department of Human Services and Education,
“Do you know what you are going to have?” asks well-meaning friends when they find out you are pregnant. “I don’t care as long as they are happy and healthy” is a common response. Why? Most parents’ top priority for their children is health—mental, physical, emotional and even spiritual health. Isn’t that what most of us seek for ourselves? Can disabled people be healthy? Of course! But society somehow loses track of this top priority when dealing with the disabled. Most of us reading this know that happiness and health are not something to be taken for granted. One in six children aged 2-8 years has a mental, behavioral, or developmental disorder (CDC, 2020). Our top priority needs to be promoting mental and emotional health.
As an Occupational Therapist, my first ethical obligation is to do no harm. I must examine the treatment methodologies I use to determine if they are effective and, most importantly, beneficial. How do I determine if my treatments are beneficial and effective? First, we choose treatments that are evidenced-based. Next, we track outcomes, both short term, and long term. Finally, we seek feedback from those who are receiving our services. If the people who have received our services report increased trauma and negative outcomes, we MUST address these issues and take a very close look at what we are doing. Reports of negative outcomes should actually spur us to STOP using the treatment modality until we can be assured the negative outcome was not due to our treatment. We also ought to consider other treatment modalities that do not have negative outcomes reported. This is the essence of ethics in medical and mental health practice. It is our ethical obligation as practitioners to listen to the voices of those we treat.
Somehow, in the world of ABA, this concept has been disregarded. Even still, many parents and professionals discredit these voices, saying things such as “my child has made great improvements, they have fun, and they love their therapists”. Even though some changes have been made since the early days of ABA therapy, with more attempts at being playful or gentle with their approach, one major goal is compliance. Other methods of dealing with challenging behaviors include ignoring behaviors and even punishment. Clients are often asked to do discrete trials, even if they give communication attempts that they do not want to do more trials, they learn they must persist to get a reward. “This is completely counter-intuitive to self-advocacy, self-determination, and upholding human rights and dignity” (The SLP Neurodiversity Collective, 2020). In a recent study, “respondents of all ages who were exposed to ABA were 86% more likely to meet the PTSD criteria than respondents who were not exposed to ABA” (Kupferstein, H. 2018). Why was this study even done, one might ask? The neurodiversity and actually autistic movement is an advocacy movement that is international and growing rapidly. The voices in this movement who have had ABA are very clear that ABA (even the more “gentle, modern” ABA) is “abusive” and has led to many mental health challenges including PTSD, depression, and anxiety. Not only does ABA have negative effects on mental health, but it also has negative consequences for learning, being flexible thinkers, and generalization of skills (more on that later).
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). The total expenditures for the ACD program in 2018 were $313.7 million. “Many behavioral approaches, like ABA, use repetition of adult-led activities to teach a child the desired response. These ‘stimulus-response’ approaches focus on external observable behavior, not on what is happening on the inside of the child. This form of conditioning can get quick, measurable results…However, after the learning experience, they had poor generalization of that information and ‘autonomously poor learning’.” (Greenspan, J. 2017) I’ve included more references and resources at the end of this letter documenting the ethical and efficacy concerns over behavioral approaches.
Almost everyone agrees that early intervention services are effective and important for people with developmental disabilities. There are many evidence-based approaches that are accepted by the autism community. These approaches are not only effective, but also delivered in less time and cost than ABA. Why do we expect small children to work for 20-40 hours a week? I’ve observed ABA classrooms, and see children in unnatural environments, away from peers and parents, doing sometimes pointless tasks. I’ve witnessed self-injurious behaviors as clients escalate when their attempts at communication are ignored in the name of compliance. All children deserve and benefit from unstructured play. All children deserve and benefit from meaningful engagement with people, including parents and peers.
Since ABA not only has questionable efficacy and many people who have experienced ABA report negative outcomes, including PTSD, we ought to look into other therapeutic approaches that are effective and supported by the Autistic community. The Autistic community overwhelmingly state they do not want “therapy” that tries to change who they are (eliminating stimming, forcing eye contact, social skills classes). Instead, they want services and adaptations that address areas of distress or disability in themselves—such as improving regulation, executive functioning, gross and fine motor skills, self-care skills, and the ability to communicate more effectively. The approaches chosen should lead to improved quality of life and improved mental health/wellness. Speech and Occupational Therapy targets all of these areas effectively and safely, and with the approval of the Neurodiversity community.
Recent research in the areas of neuroscience has brought forth new evidence of how our brains work and how we learn. The following are quotes from “Should we change targets and methods of early intervention in autism, in favor of a strengths-based education” (Laurent Mottron, European Child and Adolescent Psychiatry, 2017): “These behaviorist techniques are based on the precocity and intensity of the intervention, face-to-face interaction, errorless learning, and information fragmentation. Once considered to be “scientifically proven”, the efficacy of these approaches has been called into question in the last decade due to poor-quality data, small effects, low cost-efficiency, and the evolution of ethical and societal standards.” Later in the research article, “The behaviorist model misses a dozen other learning mechanisms, particularly implicit learning. The assumption that autistic children do not learn by themselves is clearly untrue. Implicit learning has repeatedly been demonstrated in autistic individuals [7, 46] and is actually slowed down by explicit instructions [29]. Autistic children, and not only savants, can spontaneously learn large amounts of complex information. The immediate value of the information they choose to learn may not be obvious, but autistic children resist conventional ways of learning, precisely because they learn by themselves, rather than because they are “incapable of learning” (see Dawson et al., 2008 for an informed discussion).” The author concludes, “There is currently no scientific, ethical, or societal justification for EIBI. The degree of improvement in the well-being and adaptive abilities of autistic children and adults does not justify the withdrawal of autistic children from the regular educational system and culture provided by their families and countries. However, recent contestations of the scientific value of EIBI and the magnitude of changes due to this approach, and its rejection by many members of the adult autistic community have not yet had any marked influence on public health policies, intervention targets, or scientific understanding of autism. The aims of autism science are still normative and normocentric, from suppressing autism itself to mimicking non-autistic social behavior. As highlighted by autistic adults, autism is part of the human condition and is here to stay, despite the triumphalism of some scientists. The purpose of educational and child psychiatry interventions should rather be to allow the individual to achieve an abstract level of happiness, personal accomplishment, access to cultural material, and social integration, an essential human right, regardless of the way in which this is achieved and the form that it takes. An acceptance of autistic humanity begins by changing targets, methods, and efficiency variables of the education offered to autistic children, in favor of a strengths-informed education.” This research article is just one of many articles in psychology and neuroscience that explains how the current knowledge of how our brains work and learn, should replace the antiquated methods of EIBI/ABA and other behavioral approaches.
SCERTS is a framework that not only has strong evidence supporting its efficacy but also has the support of the neurodiversity movement. There are two randomized controlled trials (RCT) demonstrating the efficacy of SCERTS in the natural contexts of a child’s home and in the classroom settings, and two other high-quality studies demonstrating SCERTS efficacy across environments (these are attached in the resources).
Solutions:
- Give incentives for established programs to develop strengths-based, neuroscience evidenced-based approaches/programs (including the SCERTS framework).
- Offer grants/support to advocacy groups.
- Promote other treatments/reimbursement for said programs.
- Offer incentives for programs to seek neurodiversity guidance.
- Educate the public on Autism/Neurodiversity Acceptance.
- Provide funding for pilot programs using the SCERTS framework in the schools and outpatient settings, with a focus on collaboration across settings (home, outpatient, and school/daycare).
- Promote the inclusion of Autistic people in the schools, community, workforce, and daycare settings.
- Ensure pediatricians know when to refer to Occupational, Speech, and Physical therapy and provide incentives for clinics to provide therapists (including OTs, PTs, SLPs, and mental health practitioners) with training on neurodiversity and frameworks that are accepted by the neurodiversity movements.
The neurodiversity and actually autistic movement isn’t going anywhere—it is growing and booming because it has evidence and common sense on its side. It is made up of incredibly talented, brilliant, creative and PASSIONATE people who are not going to back down. One day soon, we are going to look back at ABA and cringe. Minnesota Department of Human Services and Education, you have an opportunity to be a pioneer in promoting the neurodiversity cause, by promoting mental and physical health for all your citizens, especially those who are most vulnerable. We owe it to Autistic people, caregivers, and society to provide the most beneficial, cost-effective, and evidence-based approaches.
“I did then what I knew how to do. Now that I know better, I do better” Maya Angelou
Thank you for your time and consideration,
Ausome Autistic, OT, and mom of Autistic child
ABOUT THE AUTHOR – AND WHAT YOU CAN DO:
I am an autistic Occupational Therapist with an autistic son. I became aware that the State of Minnesota was holding focus groups to discuss the roll-out of their EIDBI services. This is a perfect opportunity to advocate for empathetic and respectful evidence-based practices for the autistic community and to educate policymakers that there are other options than ABA. I had a week to write letters to send, and I have only been immersed in the Neurodiversity movement for the last two years. I’m always learning. Some of the things I wrote maybe better articulated, they may not match what others believe, they may evolve in time to something different as I learn more and grow in my understanding of Autism. But that is ok! We do not need to know everything in order to advocate. We do not need to be perfect. I’m sharing this with you all not as a perfect example of what to write or say, but as a template. Go ahead and use it word for word if you’d like, or change most of it to fit where you are at in your journey. I just hope this encourages other people to speak up and take action. We owe it to ourselves, the people we serve as professionals, and our children to DO and SAY something when we can, even if it is a simple conversation with a friend.
FOR MORE INFORMATION AND TO VOICE YOUR OPINION – CLICK HERE:
Departments of Human Services and Education seek autism focus group volunteers
Resources:
Interagency Autism Coordinating Committee (IACC). 2018 IACC Summary of Advances in Autism Spectrum Disorder Research. April 2019. Retrieved from the U.S. Department of Health and Human Services Interagency Autism Coordinating Committee website: https://iacc.hhs.gov/publications/summary-of-advances/2018/.
SCERTS CSI study: www.ncbi.nlm.nih.gov/pubmed/29939056
SCERTS Hong Kong Study: link.springer.com/article/10.1007/s10803-018-3649-z
SCERTS/ESI study: http://pediatrics.aappublications.org/content/134/6/1084
A4A’s Report and Recommendations to the Government of Canada (full version): A4A- 2019 Report & Recommendations to the Government of Canada
A4A’s 2019 Report and Recommendations to the Government of Ontario’s Autism Policy Consultation Panel (full version): Ontario_Recommendations_Inclusion is the New Gold Standard
A4A’s 2018-19 Human Rights Report to the United Nations: A4A_Human Rights Report_UN_redacted
2019 Department of Defense – “ABA’s effectiveness is unproven”:
On October 25, 2019, the Department of Defense reported to Congress regarding TRICARE, and the effectiveness of ABA treatment for autism. Based on data outcome measures, 76% of those receiving ABA treatment had no change in symptoms, and 9% WORSENED by more than a full standard deviation. This data reaffirms the November 2018 assertion by Navy Captain Edward Simmer, Chief Clinical Officer of the Tricare Health Plan, that the effectiveness of applied behavioral analysis for autism remains unproven.
Evidence of increased PTSD symptoms in autistics exposed to applied behavior analysis
Kupferstein, H. (2018), “Evidence of increased PTSD symptoms in autistics exposed to applied behavior analysis”, Advances in Autism, Vol. 4 No. 1, pp. 19-29. https://doi.org/10.1108/AIA-08-2017-0016
Should we change targets and methods of early intervention in autism, in favor of a strengths-based education? Mottron, L. Eur Child Adolesc Psychiatry (2017) 26: 815. https://doi.org/10.1007/s00787-017-0955-5
Treating self-injurious behaviors in autism spectrum disorder:
“Self-injurious behavior is a cry for help.” “ABA therapists use an FBA to look at both the antecedent and the consequence of SIBs in order to hypothesize the function of SIBs. It is unclear why one would assume such an assessment/analysis would also be appropriate to assess the thoughts, feelings, and other internal processes that often determine the function of self-injurious behaviors (especially since we know this is the case for SIBs in the non-autistic population). Instead of approaching these SIBs and understanding them the way we understand SIBs in other populations, we have misapplied an FBA in an attempt to measure SIBs despite the fact that it cannot measure such a construct. This makes the assessment unscientific and methodologically flawed.”
Gary Shkedy, Dalia Shkedy & Aileen H. Sandoval-Norton | Luca Cerniglia (Reviewing editor) (2019) 01 Nov 2019. Journal Cogent Psychology Volume 6, 2019 Issue 1. 6:1,DOI:10.1080/23311908.2019.1682766
Training by repetition actually prevents learning for those with autism
“It’s like they showed ‘hyperspecificity’ of learning — their learning became fixed and inflexible — since learning the first location adversely influenced their ability to learn the second instance,” said Hila Harris, the study’s lead author from the Weizmann Institute.
STRENGTH BASED APPROACH
The importance of using child’s strengths as a basis for therapy: Should we change targets and methods of early intervention in autism, in favor of a strengths-based education? https://link.springer.com/article/10.1007/s00787-017-0955-5
Autistic children at risk of being underestimated: school-based pilot study of a strength-informed assessment: Courchesne, V., Meilleur, A.S., Poulin-Lord, M. et al. Autistic children at risk of being underestimated: school-based pilot study of a strength-informed assessment. Molecular Autism 6, 12 (2015) doi:10.1186/s13229-015-0006-3
NEUROLOGICAL BASED SCIENCE
Neurological based science vs Behavioral Science:
“Our education system is working from a model that views behaviors in isolation of the child’s body, mind and relationships. We can all spread the message about a new paradigm that replaces behavior science with brain-based informed practices* with compassion at the core.” Mona Delahooke, Ph.D.
As of 2015, the National Institute of Mental Health is no longer funding research based solely on the Diagnostic and Statistical Manual (DSM V), the “bible” of diagnoses. Instead, it is directing research money to studies looking at underlying common pathways across disorders and conditions.https://www.nimh.nih.gov/about/directors/thomas-insel/blog/2013/transforming-diagnosis.shtml