The most challenging part of sharing information about ABA is that many of those who I am trying reach, may be so offended by my perception that they reject the information I am sharing here. I need to be clear, I do not have a personal issue with those who seek ABA or use ABA. If you’re a parent who’s child has been in ABA, you know what that demonstrates to me? You love your child and you want the best for them. You want to give them every opportunity you can to succeed. I’m sure you feel obligated to do so, as we all do. To my child’s EAs, you have all been angels who truly cared about my child. I could see that you all wanted to support him and loved him for who he was, not what the school system wants him to be. This is not an attack on the wonderful parents and support staff who continue to do what they feel is best for their kids.
ABA tends to be the only option offered to parents who have just received a sometimes overwhelming diagnosis. There are other options, but we need to talk about them so that families know they are out there and often do not require hours of intensive, expensive therapies. We all have the right to informed choices. It is believed that because the funding is so heavily dumped into behavioural research the information is often bias and requires a review with a critical lens. Before you start pouring through the research and resources, I would like to share my experience with ABA and how I ended up with the mindset I have today.
Before I acquired my degree in Child Development, I received my diploma in Early Childhood Education. For this program, we were given a placement, every semester. In the 4th semester, we got to choose if we wanted to try a “special needs” placement or not. I was thrilled to have the opportunity. The centre I was placed in was for all children but they provided an ABA approach to learning and Behavioural Therapists (mostly students) kind of ran the classes.
From the moment I walked in, it was not like any other centre I had been in. I expected it to be “different” but not in this way. I expected to see more sensory materials and calming areas, not what I saw. It may be hard for you to understand my perspective, coming from ECE, but I will try to explain. In ECE, it had been drilled into us to always be open-ended, child-led, responsive, flexible and encourage divergent thinking. This school had a completely opposite mandate and that was very confusing but I adapted. Although it made me uncomfortable, I was very eager and willing to understand the reasoning behind these methods.
One day, we were doing a circle time. There was a part where the child had to place the sun on the calendar. The whole circle time was about making them do things like this and that can be exhausting for some autistic people. This child was 3 yo and non-verbal and he had decided he was not putting that sun on that calendar. They spent 30 minutes on this!! They were also not going to “let him get away with it. We need to force compliance.” They drag him over to the calendar, him kicking and screaming. They keep trying to force him to hold the sun and he will not. The adult perception is “how dare he not comply and ‘act violently’ towards the ABA student.” She decides she needs a break so she drags him over to a bench that faces the window and not the room. She instructs me to make sure he stays sitting still, facing the window, no talking to him.
I was horrified and truly confused. I kept gently redirecting him to the bench and sitting with him. The ABA therapist did not like this so she decided it was time to force the sun issue again. She got the assistance of another educator and the ECE held the child’s body while the ABA therapist wrestled with his flailing arms. She placed the sun in his palm and held it there while forcing the child’s arm. This finally resulted in the sun being forced onto the calendar. Then the child got a negative report home for the day about how he was so non-compliant with therapy and “we need you to be more consistent at home for these therapies to work.” I also received a chat regarding my lack of “consistency.”
Now obviously the physical approach the ABA student took was highly inappropriate, although common practice. Just to give you a hint as to my perception…. we weren’t even allowed to teach calendars to 3 yo’s because it’s developmentally inappropriate. If we put a calendar into our activity planned for a 3 yo, we would fail the class. This forcing the calendar just made no sense, on so many levels. The only objective was to break him and force compliance. Putting a sun on a calendar is not a life skill.
This was the most memorable and traumatizing experience I had but throughout the placement, I just could not understand the logic even behind the therapy; if they wanted these children to be just like their peers, why would we treat them and teach them in a completely different way?
I know… I can hear all the dismissive questions and comments. Let me cover some of them:
“well that’s one bad experience from a disgruntled placement student.”
Nope, I am not a disgruntled student. I did GREAT at that placement. I was offered a job and given raving reviews from my placement teachers, including that ABA therapist.
“That’s 1 ABA student, not an entire field of therapy.”
Nope! Many classmates and colleagues had the same placement with different placement teachers and therapists, we all walked away saying we felt traumatized.
“That was years ago. It’s not the same anymore”
This experience happened in 2012 and I have heard subsequent accounts of the same behaviour up to 2015.
“Well you must be in some State or country with barbaric, outdated laws.”
Nope! This was a centre in downtown Toronto Ontario, Canada. The student was from a major University where they teach the same methods today. Tons of tax payer dollars and parents hard earned money wasted on this traumatizing therapy.
“Well that was one centre, it’s not like that everywhere’s.”
There are definitely varying degrees of this method. My own child has attended more “gentle classes” but the same intention of making them less autistic/neurodiverse is still the goal. In the resources you will find reference to social learning skills. Some of these were done with our child and resulted in him feeling like he was a “bad” when he didn’t remember routines or couldn’t sit still. Since seeing the negative impact of these more “gentle” methods, I have been very vocal, that these strategies are not to be used with our child. Even OT, which I thought was helpful, focused on how to get him to sit still. They presume that stimming is a sign of anxiety and you reduce the stimming, you reduce the anxiety. It is quite the opposite. Stimming is how autistic people (and a lot of neurotypical people) cope with anxiety. It is a sign of anxiety but not the cause.
It Is Not Just the Method but The Intention, That is Also Ableist
It’s actually not just the method that I have concerns with, in regards to ABA. The intention to cure people or teach them how to mask their autistic traits, in order to fit into a neuronormative world, does not sit well with me or the greater autistic community. That is why tools such as Super Flex, social stories and full-body listening are also seen as ableist. I also have concerns about the deficit perspective that we often see with ABA and the focus on fixing problems that are not actually problems for the client. Furthermore, the example of self-injurious behaviour, as the typical example as to when ABA is necessary, we believe ABA is not the best way to teach the self-regulation skills needed to process a meltdown or outburst. We believe it usually tries to stifle those emotions that the client demonstrates they have a need to express.
“Well what about an autistic child who hits other people?”
A child does not hit because they are lacking the knowledge from a social story.
A child does not hit because they are unaware that their whole body needs to be listening.
A child does not hit because last time they hit, someone hugged them.
A child does not hit because of a lack of consequences.
A child does not hit because they need to be rewarded for not hitting.
A child does not hit because they have “unthinkable” thoughts and urges.
A child hits because they feel threatened and dysregulated. Their body and mind have gone into fight or flight mode. Trying any of the above strategies further exacerbates the child’s stress, delaying their ability to self-regulate and often escalating the situation.
So no, behavioural strategies are not necessary or even helpful in preventing and reducing a child’s urge to hit someone.
10 Reasons ABA and Behavioural Modification Strategies are Not in Line with Responsive Parenting
1. Goals often focus on teaching a child how to appear neuronormative, instead of learning self-acceptance and awareness.
2. Method is not child-led. A truly child-led approach cannot have specific adult driven goals.
3. Research is flawed, given behavioural theory is used for marketing and sales so big companies pay lots of money to research how people think, act and feel, why and how. Then use that information to influence or change their behaviour, ie. make money off of them, ultimately.
4. History of behavioural theory is concerning for most attachment focused practitioners.
5. Neurodiverse adults are, in large, against behavioural therapies of all kinds.
6. These therapies are ableist and harmful, even if they appear “fun.”
7. These therapies do not support living an authentic and self-fulfilled life. They teach children from a young age that their neurodiversity is an illness that needs to be cured and what’s worse, they are the only one’s who can cure it by doing exactly what the therapist says, even if it makes them uncomfortable. Not a lesson that is conducive to understanding one’s own needs.
8. All behavioural therapy goals, if they are relevant and helpful to the family and child, can be achieved with alternate methods.
9. Responsive Parenting is one of the alternatives to these therapies. They usually do not work well together, as the view of the child is not the same.
10. These therapies tend to be the only option offered to overwhelmed parents, desperately in need of support. It’s a “snake oil salesman” funded by your insurance. That is why our blog is free, I answer a ton of questions online for free and our workshops are only a few dollars. If I could make everything free, I would, because I’m tired of money being such a huge hurdle for so many parents. ABA is offered by insurance so it seems like the only option for so many. Any therapy that is backed by big pharma, I believe needs to be scrutinized deeply for ethical violations.
Research to Support Co-Regulation Over Seclusion
Self-Regulation: The Impact of Trauma: https://self-reg.ca/wp-content/uploads/2020/06/Infosheet_Impact_of_Trauma.pdf
The Roots of Mindblindness: https://cdn.fbsbx.com/v/t59.2708-21/176977544_856360905092157_8259996114098465226_n.pdf/0959354304046179.pdf?_nc_cat=110&ccb=1-3&_nc_sid=0cab14&_nc_ohc=626LCYfwSnwAX_D1rcV&_nc_ht=cdn.fbsbx.com&oh=30f55576a744e07e42e6dea42bbbbd43&oe=6084BC77&dl=1
Childhood Disability and Disabled Childhoods: https://cdn.fbsbx.com/v/t59.2708-21/158208024_249141593426202_7212999285031722255_n.pdf/1998-Childhood-Disability-and-Disabled-Childhoods.pdf?_nc_cat=110&ccb=1-3&_nc_sid=0cab14&_nc_ohc=WObB3OQTeSMAX81MsWn&_nc_ht=cdn.fbsbx.com&oh=c4593dab32417b83b7d7de62267c01dc&oe=6084B062&dl=1
“The stairs didn’t go anywhere!”: A Self- Advocate’s Reflections on Specialized Services and their Impact on People with Disabilities: https://cdn.fbsbx.com/v/t59.2708-21/176662704_448197769813885_8623594157379175768_n.pdf/2004-the-stairs-didnt-go-anywhere-a-self-advocates-reflections-on-specialized-services-and-their-impact-on-people-with-disabilities.pdf?_nc_cat=101&ccb=1-3&_nc_sid=0cab14&_nc_ohc=FW5JFAGyK9gAX-DcFXH&_nc_ht=cdn.fbsbx.com&oh=f390bd17dc037008712c9c750e713c7f&oe=60849677&dl=1
The social model of disability: thirty years on: https://cdn.fbsbx.com/v/t59.2708-21/14244637_10154575859449596_5154566221034684416_n.pdf/2013-the-social-model-of-disability-30-years-on.pdf?_nc_cat=110&ccb=1-3&_nc_sid=0cab14&_nc_ohc=C3xqOBPOGUgAX8Qk9fP&_nc_ht=cdn.fbsbx.com&oh=4aedda40e2b379608282872dd5c6dede&oe=60849608&dl=1
On the Meanings of Self-Regulation: Digital Humanities in Service of Conceptual Clarity: https://cdn.fbsbx.com/v/t59.2708-21/176612321_713887422657534_8830892199534450547_n.pdf/cdev.12395.pdf?_nc_cat=104&ccb=1-3&_nc_sid=0cab14&_nc_ohc=FbcsXsztwRYAX_0VqBe&_nc_ht=cdn.fbsbx.com&oh=0f548a2afe5d9af3dacd9654c5bb27df&oe=60846D9E&dl=1
The Reinforcement of Ableism: Normality, the Medical Model of Disability, and Humanism in Applied Behavior Analysis and ASD: https://cdn.fbsbx.com/v/t59.2708-21/18220146_10212325320275730_9115236653105938432_n.pdf/ContentServer.pdf?_nc_cat=105&ccb=1-3&_nc_sid=0cab14&_nc_ohc=SkVJStlErvUAX-BbHI9&_nc_ht=cdn.fbsbx.com&oh=c2c675bbb165140399e964f673fc8053&oe=6084A768&dl=1
DisCrit solidarity as curriculum studies and transformative praxis: https://cdn.fbsbx.com/v/t59.2708-21/176389029_513351660038047_8552270127652317924_n.pdf/DisCrit-solidarity-as-curriculum-studies-and-transformative-praxis.pdf?_nc_cat=106&ccb=1-3&_nc_sid=0cab14&_nc_ohc=WzbB9zsNMNcAX8ar8TH&_nc_ht=cdn.fbsbx.com&oh=182eeda54562fc6d1a6f10625ae8028f&oe=60847B11&dl=1
Advances in Autism: https://cdn.fbsbx.com/v/t59.2708-21/165325966_910809919733327_5208847298325117255_n.pdf/McGill_Robinson_AA_2020_autistic_experiences_of_childhood_Applied_Behavioural_Analysis.pdf?_nc_cat=106&ccb=1-3&_nc_sid=0cab14&_nc_ohc=7nVvbaWmyDMAX_miCWl&_nc_ht=cdn.fbsbx.com&oh=732af8a6b47057bfe18c90129636effa&oe=6084D89C&dl=1
My Speech Problem, Your Listening Problem, My Frustration: https://cdn.fbsbx.com/v/t59.2708-21/176644662_786539608555120_4651105124995946933_n.pdf/My_speech_problem_your_listenining__xid-52032350_2.pdf?_nc_cat=110&ccb=1-3&_nc_sid=0cab14&_nc_ohc=acy4TjddgbwAX9ewUhN&_nc_ht=cdn.fbsbx.com&oh=49caea6b71f9c30451c300a3085da2ff&oe=6084B47B&dl=1
Ableism as Transformative Practice: https://cdn.fbsbx.com/v/t59.2708-21/176604702_495593194900721_115111038640483726_n.pdf/Campbell_F.K._2014_._Ableism_as_Transfor.pdf?_nc_cat=107&ccb=1-3&_nc_sid=0cab14&_nc_ohc=7Cr-4z9T1rwAX8KhRn9&_nc_ht=cdn.fbsbx.com&oh=1ea9bfff767915641f060d57bb02a4f5&oe=60846211&dl=1
Disability Studies Quarterly: https://dsq-sds.org/
Alliance Against Seclusion and Restraint: https://endseclusion.org/
Research to Support the Argument Against ABA
Commentary: What conflicts of interest tell us about autism intervention research—a commentary on Bottema‐Beutel et al. (2020): https://acamh.onlinelibrary.wiley.com/doi/10.1111/jcpp.13315?fbclid=IwAR14DvDP0ixRk-pakMH6jJvU1CDVqEPA2rlFZ6xzVI9AuYF5gu4fdNt2oUg
Replication Research, Publication Bias, and Applied Behavior Analysis: https://link.springer.com/article/10.1007/s40614-019-00191-5?fbclid=IwAR0aExzYMJmX1udJCzN7w3b6Vavz5JuETlpOlUJXLqhxH5cstf_AU403Z8Y
The Department of Defense Comprehensive Autism Care Demonstration Quarterly Report to Congress Second Quarter, Fiscal Year 2019: https://www.playproject.org/wp-content/uploads/2020/04/TRICARE-Autism-Report.pdf?fbclid=IwAR2c-TQS3XUhw4VHKOk2vqLYg6gzfuj-hIDQMf5fFKkzEdlYO7vpVGLIFEI
This is copied from Greg Santucci, OT: https://www.facebook.com/105672391215348/posts/146153917167195/?d=n
For those who want to read more about why ABA is not the evidence-based, gold standard intervention they claim to be:
In alphabetical order:
Gruson-Wood, J. F. (2016). Autism, expert discourse, and subjectification: a critical examination of applied behavioural therapies. Studies in Social Justice, 10(1), 38-58. https://doi.org/10.26522/ssj.v10i1.1331
An open-access paper which doesn’t outright condemn ABA practice or practitioners, rather aims to create space for social justice awareness and recognition of inherent problems.
Kapp, S. K., Gillespie-Lynch, K., Sherman, L. E., & Hutman, T. (2012). Deficit, difference, or both? Autism and neurodiversity. Developmental Psychology, 49(1), 59-71. https://doi.org/10.1037/a0028353
A summary of the nuances of the neurodiversity movement as an intersection of both the social and medical models: awareness of neurodiversity is associated with an increase in positive feelings about autism, but not a decrease in negative feelings, suggesting that it frames autism as having both advantages and disadvantages. The paper contains some good discussion about why autistic advocates decry cure-based methods, which I think all practitioners working with autistic clients should be aware of.
Kirkham, P. (2017). ‘The line between intervention and abuse’ – autism and applied behaviour analysis. History of the Human Sciences, 30(2), 107-126. https://doi.org/10.1177/0952695117702571
This paper examines the controversial history and current situation of ABA practice and why ABA is in conflict with what we know about autistic behaviours (eliminating self-regulating behaviours in an effort to normalise an autistic person is removing a person’s coping mechanisms; efforts to make an autistic person less autistic are both misguided and harmful). Highly recommended reading.
Kupferstein, H. (2019). Why caregivers discontinue applied behavior analysis (ABA) and choose communication-based autism interventions. Advances in Autism, 6(1), 72-80. https://doi.org/10.1108/AIA-02-2019-0004
Autistic people subject to ABA interventions are more likely to exhibit post-traumatic stress symptoms, suggesting these interventions are traumatic in some way. The paper also discusses communication-based interventions as a possible alternative.
Mottron, L. (2017). Should we change targets and methods of early intervention in autism, in favor of a strengths-based education?. European Child & Adolescent Psychiatry, 26(7), 815-825. https://doi.org/10.1007/s00787-017-0955-5
ABA interventions do not consider the realities of autistic learning and modes of existing. This paper discusses the history of behavioural interventions, the concerns around what is assumed in measuring developmental milestones and requiring ‘prerequisite’ learning, ways of autistic language acquisition that are atypical compared with non-autistic learning, and the importance of restricted interests and repetitive behaviours. Concludes that there is no scientific, ethical or societal justification for early intensive behavioural interventions. Highly recommended reading.
Rodgers, M., Marshall, D., Simmonds, M., Le Couteur, A., Biswas, M., Wright, K., Rai, D., Palmer, S., Stewart, L., & Hodgson, R. (2020).
Interventions based on early intensive applied behaviour analysis for autistic children: a systematic review and cost-effectiveness analysis. Health Technology Assessment, 24(35), 1-306. https://doi.org/10.3310/hta24350
An enormous meta-analysis of the clinical effectiveness of early intensive ABA interventions based on the ‘evidence’ available. They found that all studies used as ‘evidence’ for ABA efficacy contain at least some bias. Results suggest that early ABA intervention offers little to no improvement in language development, challenging behaviours or symptom severity.
Sandoval-Norton, A. H., & Shkedy, G. (2019). How much compliance is too much compliance: is long-term ABA therapy abuse?. Cogent Psychology, 6(1), 1641258. https://doi.org/10.1080/23311908.2019.1641258
This paper discusses the negative long-term effects of ABA intervention and the lack of evidence indicating its use for nonspeaking and/or intellectually disabled autistic children. The paper highlights these approaches as outdated, contrary to current knowledge on autism, and ultimately abusive. Highly recommended reading.
Wilkenfield, D. A., & McCarthy, A. M. (2020). Ethical concerns with applied behavior analysis for autism spectrum “disorder”. Kennedy Institute of Ethics Journal, 30(1), 31-69. https://doi.org/10.1353/ken.2020.0000
A discussion of the ethical tenets of education and interventions, drawing upon philosophical understandings and ontologies that ultimately demonstrate why ABA is fundamentally built on unethical grounds. The authors argue that ABA violates autonomy by forcing children to mask or alter their identities and teaches them there is something wrong with who they fundamentally are. According to this paper, each of the targets of ABA interventions is unethical – and they illustrate this case very well.
Huge shout out to Kelp Hoy for putting rhis together!
Posts and Articles that May Inform Your Research
Parents’ Guide to ABA: https://www.facebook.com/1849363188470496/posts/4555402341199887/?d=n
Autism Speaks Review from Autistically Alex: https://autisticallyalex.com/2019/04/01/autisticorganizations/?fbclid=IwAR1F1sdArvzcbFWRvdO66tHggyxtlQYgk-v6aDY-kSu7CHEI8qUejsVhjH4
Invisible Abuse: ABA and the things only autistic people can see: https://neuroclastic.com/2019/03/28/invisible-abuse-aba-and-the-things-only-autistic-people-can-see/?fbclid=IwAR3gnEDQ39khA_lDSRfpmSrHFEuJrgFnGqKaEvAoDNLzina2GlKUaBV9yNI
Autism and Behaviorism: New Research Adds to an Already Compelling Case Against ABA by Alfie Kohn: https://www.alfiekohn.org/blogs/autism/?fbclid=IwAR36utds-demvLhoVSvNRbZX15MTPLWpRv1ih7hfq5kEl6UKH-edyj1UVO4
The Horrors of Autism Speak$ – worse than any Pyramid scheme: https://www.facebook.com/980020248675739/posts/4104304509580615/?d=n
Why We Don’t Use Social Thinking® (or any commercial Social Skills training programs): https://www.facebook.com/1849363188470496/posts/4410443629029093/?d=n
ABA Violates Autonomy: https://www.facebook.com/1849363188470496/posts/4334613529945437/?d=n
Disabled and parent activists are often at odds. The authors of a new book explore why: https://www.hollandbloorview.ca/stories-news-events/BLOOM-Blog/disabled-and-parent-activists-are-often-odds-authors-new-book?fbclid=IwAR212r_DzNpl9nAFwmA1Ox8Znxfu2P8Pi_WUGL16I7oq4J5MOI5iIM3VLpc
Stop ABA, Support Autistics
Human Neurodiversity Should Be Celebrated: https://fb.watch/4Et0qjlwyk/
Links to Autism and Neurodiversity Advocates
Neurdivergent Rebel: https://m.facebook.com/NeurodivergentRebel/
Kirsty Forbes: https://www.facebook.com/inTunePathways/
Summer Farrelly: https://www.facebook.com/Chickens2love
Autism Inclusivity: https://www.facebook.com/groups/autisminclusivity/?ref=share
The Neurodiverse Woman (not all about autism): https://www.facebook.com/theneurodiversewoman
Autie-biographical comics: https://www.facebook.com/autiebiographical/
Parenting through the Fog: https://www.facebook.com/ParentingThroughTheFog
More Than One Neurotype: https://www.facebook.com/morethanoneneurotype/
Neurodiversly Unbroken: https://www.facebook.com/Neurodiversally/
Quirky. Stimmy. Cool.: https://www.facebook.com/Quirky.Stimmy.Cool/
No Nonsense Neurodivergent: https://www.facebook.com/NoNonsenseND/
Alliance Against Seclusion and Restraint: https://www.facebook.com/endseclusion/
Greg Santucci OT: https://www.facebook.com/gregsantucciOT/
Therapist Neurodiversity Collective: https://www.facebook.com/NeurodiversityCollective/
Autism Acceptance List of Resources from Autistic People: https://documentcloud.adobe.com/link/track?uri=urn%3Aaaid%3Ascds%3AUS%3Ac552ba71-8c1e-4947-a2a3-5273d013c42e&fbclid=IwAR0GPNiowZ87mCvhmJzBxMfPusXCSNBygtgPX7BdSx6JqNONap6X8-20M0Y#pageNum=1