Protect Autistic People from Harmful Therapies

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“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.”
- Office of the High Commissioner for Human Rights at the United Nations (1).

We, the autistic community, respectfully request to the council that neurological orientation, such as autism, be included in the Memorandum of Understanding (MoU) on Conversion Therapy of the UK Council for Psychotherapy (2).

Since autism was first defined, autistic individuals have been subjected to conversion therapies in the form of behaviour manipulation because of their neurological orientation, most prominently Applied Behaviour Analysis (ABA). These have the purpose of changing the autistic individual’s behaviour without
respect for their different neurology. Forcing autistic children to mimic behaviours of neurotypical peers when that behaviour is not natural to them can be disabling and is damaging to overall mental health.

Anyone accessing therapeutic help should be able to do so without fear of judgement or the threat of being pressured to change. ABA teaches that autistic thinking is inferior and flawed and that, without correction, a child will not develop the skills necessary to become independent in life. This negatively  impacts self-esteem, as autistic thinking and behaviours are an integral part of our identity. Most of us choose to use identity-first language (3) and refer to ourselves as autistic because we see our autism as a fundamental part of who we are. It is a predominantly genetically inherited, naturally occurring difference in neurology, a fundamental part of who a person is, not something which should be altered for the convenience of others.

ABA destroys a child’s intellectual potential by conditioning them to pretend to be someone they are not and interfering with their natural developmental trajectory. If Galileo Galilei, Wolfgang Amadeus Mozart, Albert Einstein or Bill Gates had been subjected to ABA, we would most likely not know their names today.

ABA teaches the child that who they are naturally is not good enough, that they are broken and need to be fixed, like an object in a repair shop. It takes away their self-esteem, denies them an intrinsic part of their personality, even their intellectual and physical autonomy, and risks replacing these with self-hatred, the belief that they are a burden and cannot be accepted for who they are.

ABA addresses individual behaviours, not the underlying reasons for those behaviours. The issues that impact a person's functioning, such as anxiety and sensory overload, remain and build up, which can cause meltdowns in the short term and cause serious mental health issues in the long run.

The heightened pressure, anxiety and helplessness experienced during the therapy leads to severe Post Traumatic Stress Disorder (PTSD) (4), as a 2018 study has shown (5). There is also a plausible case for ABA causing Obsessive-Compulsive Disorder (OCD) (6) for the same reasons, as well as for depression and regressive autism (4). (“Could it be that sudden major regression is common in ABA programs rather than common in autism? We find this premise to be consistent with our training in depth psychology. According to Sigmund Freud, regression takes place in the face of acute trauma and overwhelming anxiety. We posit that behavioral modification can be a springboard to many serious maladies and maladjustments.”)

Through ABA, the child is taught that their value depends on their obedience, and that their appreciation is subject to their subservience. ABA uses aversives and reinforcers, and in many cases the children are denied access to things of interest (and sometimes even basic needs such as food) unless they are compliant. The child also learns that they have no right to control their own minds and bodies, and this leaves them vulnerable to all kinds of mental and physical abuse (7).

Autism cannot be cured, it is how we work, how we interpret the world around us and how we interact with it. We will always be autistic, even if we are coerced by behavioural therapies to appear less autistic, just like left-handed individuals who are forced to use their right hand are still left-handed, and like homosexuals who underwent conversion therapy are still homosexual (with the added trauma that comes with conversion).

Autism is not a disease, it is not communicable, it is not degenerative, and it does not in itself inflict pain or discomfort. There may be co-occurring conditions or unaddressed medical issues that cause pain, but these are not autism.

Autistic behaviours are a form of communication, expressed by those who perceive the world differently and who need support structures in place and appropriate services to navigate a hostile world which is not set up for them. In contrast, the aim of most of behavioural therapies is to target individual coping measures in an effort to make us indistinguishable from our non-autistic peers, despite our neurology making it impossible for us to think like them. ABA ‘treatment’ typically focuses on observable behaviours and underdeveloped skills compared to typically developing peers and skills that are subjectively determined to be 'socially significant' in mainstream society. This is despite autistic individuals often having different natural developmental trajectories, and anxiety and sensory experiences which shape their lived experience of the world around them.

Furthermore, as far as we can establish, ABA has never been ethically approved in the UK and is certainly not under any UK regulatory or supervisory body. The January 2017 Autism Dividend Report (8) noted that 'concerns had been strongly expressed by some autistic people and their families and carers that some behavioural therapies [and this would include ABA and Positive Behavioural Support, PBS] are unethical because they attempt to force autistic people to adopt (or stop) certain behaviours, even when it causes considerable discomfort or even pain and can therefore cause harm.' A landmark paper, 'The Misbehavior of Behaviorists' by Michelle Dawson, discusses in detail the ethical issues of ABA (9).

Furthermore, in the UK, we are seeing ABA programmes being offered and supervised with no minimum certification or autism understanding requirements. Programmes are being recommended for autistic children as young as 18 months old for up to 40 hours a week (10). The Autism Dividend Report also states that, “Particularly for intensive childhood interventions, there is also considerable risk of turning every activity into therapy with "learning goals" and "observations", jeopardising the right of children to
have free time and play and recreation (UN Convention on the Rights of the Child.).” It further notes that, “Turning every activity into therapy does not constitute giving them "free time." (8).

ABA is often proclaimed as the most 'evidence-based’ intervention for autism, despite the quality and relevance of the data gathered being highly questionable and of lower standards than research for other conditions. In addition, beliefs and assumptions about and prerequisites required for autistic learning still predominantly reflect the views of Lovaas (e.g. need for quiet hands, ‘table readiness’, repetition, explicit teaching of broken down tasks, extrinsic reinforcements (such as those seen in Discrete Trial Training ABA
sessions) and are not supported by more recent research as a good way for autistic people to learn. They also risk damaging natural spontaneous autistic development.

Here in the UK we are seeing ABA practice grow in popularity amongst vulnerable parents who want to help their children. Parents are being led to believe that they will be failing their children without ABA and are putting the mental well-being of their children at risk.

We write this open letter in the hope that the signatories of the MoU on Conversion Therapy will also sign up to protect our human rights and to have our neurological orientation protected from coercive conversion therapies. Autistic people need understanding and acceptance to flourish, not behavioural interventions modifying our external behaviours to make us appear less autistic when our internal experiences are at odds with the desired outcomes. We want the right to embrace our different neurology, and we hope this letter goes some way to achieving that end. Today we ask that we be granted human rights protections to have the right to our neurological orientation protected from forced conversion therapies.

Adding neurological orientation to the MoU would mean that no member of the signatory organisations would promote any organisation whose remit is to ‘fix’ someone who is autistic, or treat being autistic as a mental health condition which needs 'curing'. This could ensure that future vulnerable parents looking to help their children are made aware of the serious damage that being put through conversion therapy can have on their children. There are more respectful ways than ABA, and we encourage the UKCP to promote those.

Please stand with us and assist us in combatting the rising hatred of autism and allow us to join with our LGBT friends in having our right to our neurology protected and appreciated. Many of us have been around at a time when conversion therapies (by professionals or parents) were the norm to ‘correct’ homosexuality, sinistrality and any other behaviour and orientation that was perceived as not agreeing with the norms of society. We are delighted to see that these people will now be kept safe from attempts to change their identity to fit the expectations of others, and we think it is a reasonable request to extend this fundamental human right to autistic individuals.

Just as it is wrong to tell someone who is gay, lesbian, bisexual, trans, or any other orientation or identity that they should be heterosexual or a specified gender, it is wrong to tell someone who is autistic that they should behave and communicate in non-autistic ways when that is not their natural method of communication. Furthermore, it is wrong to try to convey the message to them in counselling or psychotherapy that their neurology is
flawed.

We look forward to hearing back from you on this matter and thank you for the time you have taken dealing with our request.

Sincerely,

Authors: Fiona Clarke, Monique Craine, & Frank L. Ludwig
Presented and endorsed by: Autistic UK

Links:

(1) http://www.ohchr.org/EN/NewsEvents/Pages/DisplayNews.aspx?NewsID=15787&LangID=E

(2) https://www.psychotherapy.org.uk/wp-content/uploads/2016/09/Memorandum-of-understanding-on conversion-therapy.pdf

(3) https://infograph.venngage.com/p/101582/spectrum-identity

(4) http://www.astraeasweb.net/politics/aba.html

(5) https://www.researchgate.net/publication/322239353_Evidence_of_increased_PTSD_symptoms_in_autistic
s_exposed_to_applied_behavior_analysis

(6) https://www.facebook.com/carlysvoice/posts/10151358403742749

(7) http://intersecteddisability.blogspot.ie/2017/04/what-happened-to-kennedi-high-all.html

(8) http://nationalautismproject.org.uk/wp-content/uploads/2017/01/autism-dividend-report.pdf

(9) http://www.sentex.net/~nexus23/naa_aba.html

(10) http://www.childautism.org.uk/about-autism/applied-behaviour-analysis-aba-and-autism/

Further Reading:

Study: 'Evidence of increased PTSD symptoms in autistics exposed to ABA' - https://www.researchgate.net/publication/322239353_Evidence_of_increased_PTSD_symptoms_in_autistic
s_exposed_to_applied_behavior_analysis

'Why Applied Behaviour Analysis Harms Your Autistic Child' or 'ABA – When Children Are Not Allowed to be Themselves' - http://franklludwig.com/aba.html

'Why I left ABA', by a former ABA therapist -

'I Abused Children for a Living', by another former ABA therapist - https://madasbirdsblog.wordpress.com/2017/04/03/i-abused-children-for-a-living

'An Open Letter to Families Considering Intensive Behavioral Therapy', by parents whose child developed PTSD as a result of ABA - http://www.astraeasweb.net/politics/aba.html

'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 (this post is archived now, so
it is not possible to post or comment) - https://www.reddit.com/r/autism/comments/50bhcd/are_there_any_adult_autistics_who_are_willing_to

'Tackling That Troublesome Issue of ABA and Ethics', from Emma's Hope Book - http://emmashopebook.com/2012/10/10/tackling-that-troublesome-issue-of-aba-and-ethics

https://sociallyanxiousadvocate.wordpress.com/2015/05/22/why-i-left-aba



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