Evidence to Listen to Autistic People and that the Autistic Community does not support Applied Behaviour Analysis (ABA)
It is a sad state of affairs that there was even a need in 2017 to publish research evidence that supports the stance that autistic adults should be considered as “experts” and involved in matters relating to autism, but clearly there was. Despite this the alternative of autistic people being ignored, dismissed or silenced by others remains a common occurrence, experienced by many activists who wish to do nothing more than help autistic children have their needs met and grow up accepted for who they are, feeling safe and competent. One example we hear over and over is the classic rhetoric used by ABA proponents “do not listen to autistic adults as they are able to communicate, use social media so are not like your ‘low-functioning’ 3 year old child”.
This article starts off with a reference to the 2017 research article about autistic adults as “experts” and other evidence supporting the involvement of autistic people, it then sets out evidence that the autistic community does not support ABA and finishes with what ASAN, the largest organisation run by and for autistic people have to say about ABA.
If you are unfamiliar with ABA and would like to understand more about why it is so controversial, there are a lot of articles, personal accounts and independent reviews of the ABA research “evidence” on Twitter @abaukdiscussion and Facebook ABA PBS Controversy Autism Discussion page.
Also recently a number of academic and research papers have been published about learning in autism (check out our tweets on #ABAresearch for the latest). These are showing that ABA assumptions about how autistic children learn are looking rather outdated, the efficacy of ABA approaches should be called in to question and there are important omissions in the evidence in relation to understanding the risks and how ABA can harm (check out our tweets on #ABAharms). These provide substance to the view that ABA is effectively coercive compliance training and that in ABA today harmful practices, such as suppression of adaptive behaviours because they look odd are still common place. Some of these papers are listed at the end for further reference.
If you would like to read how autistic people consider autistic children can be best supported we recommend the Thinking Persons Guide to Autism , Autistic Allies , a new but growing page, Better Ways than ABA , Parenting Children with Love and Acceptance, a community that provides a safe space for Autistic people in order to help parents learn from them, We are Like Your child and the Social Skills for Autonomous People blog – Resources other than ABA.
Links to further reading and other sources of information are at the end of this article.
[Image of writing on a sunset sky that says : A Child’s Personal Bill of Rights. I have a right…To say what I think and disagree with others, to say No if I feel scared, uncomfortable or unsafe, to change my mind, to express my feelings, to ask for what I need, to be treated with respect, to live my life without being bullied, to be uniquely myself, to make mistakes, to use my talents an abilities, to choose how I respond to other people, to stick up for my rights!]
Whose Expertise Is It? Evidence for Autistic Adults as Critical Autism Experts
For recent evidence to support the involvement of autistic adults in matters relating to autism (“Nothing About Us, Without US“), we can point to the March 2017 research paper “Whose Expertise Is It? Evidence for Autistic Adults as Critical Autism Experts“. This looked at the scientific knowledge about autism, how people define autism, and the stigmatizing conceptions of autism. It concluded that:
“autistic people should be considered “autism experts” as they often build upon insights derived from the lived experience of being autistic by researching autism systematically. Autistic people who have developed heightened understanding of autism may be particularly well suited to teach other people about autism, as they tend to endorse less stigmatizing conceptions of autism, have reduced interest in making autistic people appear more normal, and may often have heightened empathy for the challenges others face”.
Other evidence supporting autistic expertise and involvement
“The involvement of autistic scholars in research and improvements in participatory methods can thus be seen as a requirement, if social research in the field of autism is to claim ethical and epistomological integrity.”
A new UK forum for an autistic participatory framework.
Educational discourse : medical/behavioural approach versus the social model
Dr Damian Milton , UK autistic autism expert and scholar, looked at the views of parents of autistic children, autistic adults and practitioners, teachers about best practice for the education of children on the autistic spectrum in his PHD thesis “Educational discourse and the autistic student: a study using Q-sort methodology” published in September 2015.
There are many pertinent points of interest in this document and some of these are set out below. (References are quoted in summary as per the body of the document.)
About the general dislike of the behaviourist/medicalised deficit model:
“Timimi et al. (2011) rightly reject explanations of autism that locate the cause of ‘problems’ as solely within the individual child (e.g. a medicalised deficit model). Timimi et al. (2011) state that much psychiatric practice is of a subjective nature, and thus is open to a great deal of abuse, one of these being the abuse of normalisation: “The desire to control, amend or even extinguish human behaviours that depart from an increasingly narrow stereotype of normality has bedevilled the history of psychiatry.” (Timimi et al., 2011: 8).”
What the thesis showed was that there are significant different ideologies between autistic people and parents of autistic children:
“With some notable exceptions (eg Jones et al, 2012), current guidance regarding best practice for the education of children on the autism spectrum often reflects a medical/behavioural model approach that seeks to remediate perceived deficits (Cumine et al, 1998; Hanbury, 2005; Hewitt, 2005; Worth, 2005; Hagland and Webb, 2009). Such advice can be contrasted with that given by autistic writers (Sainsbury, 2000; Lawson, 2010) often situating itself within a social model of disability.”
About the importance of listening to people who are autistic:
““Neurology and psychiatry have much to say about the specific formulations of autism, its origins and manifestations, but it is in listening to those who live with and in the condition that the outlines of what it means to be autistic are most significant.” (Murray, 2008: 60).”
Temple Grandin (1995) warns that a behaviourist programme is not appropriate for all on the spectrum:
“it is certain to be confusing and possibly painful for children with severe sensory jumbling and mixing problems.”
Despite this acknowledgement back then, more than 20 years later anxiety and sensory issues continue to be under-addressed or even dismissed by behaviour analysts (because they are internal, ambiguous and can not be observed and measured.) One such paper, written by a US Board Certified Behaviour Analyst and recently circulated amongst UK ABA, that illustrates a lack of empathy in this regard can be viewed here.
The “them and us” attitude and difficulties in engaging with and being listened to by ABA proponents and their cult-like behaviour is not new:
““…the whole ABA movement appears increasingly more like a cult than a science: there is a charismatic leader, a doctrine, a failure to engage with criticisms, inquisition and denunciation of any who criticise (however mildly), misrepresentation of critics, and proselytising exercises to gain more converts and spread the word.” (Jordan, 2001, cited Fitzpatrick, 2009: 141).”
Evidence that ABA is not supported by the autistic community
Listed below are a number of groups and organisations that have published position statements that they do not support ABA. All these groups are on Facebook (a very popular way for autistic people to connect and share information) and a number have websites. To give a flavour of size and support of these groups, approximate membership figures are included as at Sept 2020.
The Autistic Women’s Network AWN website (Facebook page 85,247 likes) The AWN and members of the AWN board have published a number of blogs about the issues of ABA and have confirmed that they are happy to sign specific position statements against ABA.
Thinking Persons Guide to Autism (216,274 likes)
ABA PBS Controversy Autism Discussion UK (2,460 likes)
Autistics and Allies against ABA and PBS Ireland (4,450 likes)
Ausome Training (18,650 members)
Autism Inclusivity (84,550 members)
Autistics Worldwide (12,314 members)
Autistic UK (8,838 members)
Autistic Allies (14,901 members)
Parenting Children with Love and Acceptance (34,939 likes)
Giraffe Party page (6,800 likes)
Better Ways than ABA page (10,740 likes)
Autistic Strategies Network in South Africa (1,631 members)
ABA Leaks (32,176 likes) a unique timeline of its investigations of the ABA industry up to current day
Autistic Self Advocacy Network (ASAN)
ASAN is one of the the worlds largest organisations run and led by autistic people.
ASAN is in the process of developing a series of resources for autistic people to widen current US providers and health plans coverage of autism-related services. These services can include developmental approaches regarding social communication, sensory integration, emotional regulation, and adaptive skills. More can be read here.
ASAN state that “Until now, much advocacy for coverage of “autism interventions” has focused on purely behavioral approaches, like Applied Behavioral Analysis (ABA). These interventions can be inappropriate or even harmful, and exclusive focus on coverage for behavioral interventions can result in limited access to evidence-based and emerging models that focus on improving relationships, communication skills, and development of skills that are meaningful to individuals’ quality of life.”
In May 2017, the Autistic Self Advocacy Network (ASAN) published its white paper: Firsthand Perspectives of Behavioral Interventions for Autistic People and People with other Developmental Disabilities.
“We believe strongly that people with lived experience can provide well-needed perspective on what works and doesn’t work for them, and that service providers working with people with disabilities can benefit from first-hand accounts. As a disability rights organization rooted in the principles of self-determination, we also believe that autistic people and other people with developmental disabilities deserve culturally competent, trauma-sensitive, empathetic care.”
ASAN have a number of core position statements, that relate to autism interventions and therapies. These include:
- Nothing About Us Without Us
- the use of scientifically unproven treatments and those that focus on normalization rather than teaching useful skills should be discouraged
- Acceptance of difference is essential to understanding, accepting, and benefiting from the contributions of everyone in our society
- Functioning labels significantly downplay the uniqueness of each individual, leading to artificial and inaccurate classifications that can cause Autistic people to be denied either services or opportunities.
- ASAN advocates the passage of both federal and state legislation fully banning the use of aversives and banning non-emergency restraint and seclusion
- Many therapies and products for Autistic children and adults are helpful and should be made more widely available, such as physical therapy, speech therapy, occupational therapy, and augmentative and assistive communication technology (including supported typing, facilitated communication and other methodologies that support communications access). However, ASAN opposes the use of behavioral programs that focus on normalization rather than teaching useful skills. One of the guiding principles underlying the United Nations Convention on the Rights of Persons with Disabilities is respect for the right of children with disabilities to preserve their identities. Autistic children should not have to grow up constantly being told that their natural behaviors are wrong and that they cannot be accepted as they are.
Ari Ne’eman, ex-President of the Autistic Self Advocacy Network, notes: “ABA has a predatory approach to parents. The message is that ‘if you don’t work with an ABA provider, your child has no hope.”
Research articles about autistic ways of learning that do not support ABA (#ABAresearch)
‘Some vital autism research links’blog article that is periodically updated for latest in autism research
Comprehensive NIHR review of ABA July 2020 highlighting a catalogue of issues regarding the poor ABA evidence base
Learning in autism, Dawson, Mottron & Gernsbacher, 2008
Safe spaces on-line to learn about Autism
A blog that is periodically updated about safe places to learn on line as recommended by #ActuallyAutistic people
Further reading about ABA
Ask an Autistic #5 – What is ABA? (Video by Amythest Schaber)
Amythest Schaber’s Updated Autism ABA resource Master post – Neurowonderful
Autistics Speak But Are They Heard? Milton & Bracher, Journal of Medical Sociology online June 2013
Why I left ABA, by a former ABA therapist on the dehumanising practice
Misbehaviour of Behaviourists by Michelle Dawson, discussing ethical issues of ABA.
I Abused Children for a Living, by another former ABA therapist
An Open Letter to Families Considering Intensive Behavioral Therapy, by parents whose child developed PTSD as a result of ABA
Tackling That Troublesome Issue of ABA and Ethics, from Emma’s Hope Book
Are there any adult autistics who are willing to share their personal experience with ABA therapy? is a Reddit post in which ABA-damaged adults discuss their traumatic experiences
ABA Therapy is not like Typical Parenting (the difference between intense behavior therapy and more typical forms of rewards and punishments)