Reframing Autism acknowledges that many therapies have the potential to be beneficial for Autistic people at certain stages across their lifespan.
Psychology, Occupational Therapy, Speech and Language Therapy, Music, Art and Physical Therapies, and enabling communication through the provision of alternative means such as AAC or sign language, may be intrinsic to helping Autistic individuals to manage the challenges inherent in living in a world that is not oriented to an Autistic neurology. We endorse the use of these therapies when they are approached from the strengths-based, citizenship framework that is fundamental to the social model of disability, and when they are utilised to support an Autistic individual to be their best Autistic self.
As an organisation, however, Reframing Autism has grave concerns about the provision of any therapy or intervention which “normalises” Autistic people or suppresses intrinsic Autistic behaviours.
We also reject any intervention which suggests (whether tacitly or explicitly) that a non-autistic neurology is superior or even preferable to an Autistic one.
Reframing Autism specifically rejects the use of any therapy or intervention which utilises a system of rewards and punishments to modify Autistic behaviours and train Autistic individuals to act and perform non-autistically, or which are intensive in nature.
1. EIBIs and ABA as Evidence-Based Practices
We note that, in Australia, many families are being recommended ABA as the “only” evidence-based, effective “treatment” or intervention for Autism (Lizard Centre, 2017; Autism Partnership Australia, 2013), with ABA offered as a family’s best hope of setting their child up for a successful and ordinary, independent life (Grasswill, 2014). This recommendation is coming from some paediatric and diagnostic teams, as well as some service providers themselves (e.g., AEIOU, 2019).
Reframing Autism has severe concerns with the framing of this recommendation, including:
We also note that families usually make decisions about interventions and therapies for their Autistic child shortly after an official diagnosis. Research shows that official diagnoses are often accompanied by dire predictions for a child’s future life outcomes (Chamak and Bonniau, 2013; Laser Beak Man, 2019; Chan, 2019), and parents report pressure to make intervention decisions immediately without delay to get the best outcomes for their child, citing a “window of opportunity” for early intervention (Edwards et al., 2017).
Reframing Autism does not wish to engage here extensively with the claim of an “evidence-base” for EIBIs. It should be noted, however, that a comprehensive 2018 Cochrane review cites significant reservations about the extant evidence for the efficacy of EIBIs, concluding that “there is weak evidence that EIBI may be an effective behavioral treatment for some children with ASD” (Reichow et al., 2018; emphasis added).
Research also challenges the oft-cited evidence that ABA promotes Autistic learning and engagement, suggesting that in fact it exacerbates hyper-specificity and undermines organic Autistic processes of learning (Harris et al., 2015).
More recently, in a report to Congress dated October 25, 2019, the United States Department of Defense stated about its Autism Care Demonstration package, that after a year of ABA treatment, 76% of Autistic participants showed “little to no change in symptom presentation” and, in fact, 9% demonstrated “worsening symptoms”. Equally, Hassiotis et al. (2018), documents no reduction in “challenging” behaviours in clients with intellectual disability receiving reward-based behavioural interventions.
Emerging research moreover indicates that EIBIs are less effective for non-traditionally communicating Autistic children, and that prompt-dependency, reward-expectation, reduced performance quality, difficulty generalising, unquestioning compliance, and learned helplessness characterise the adult Autistic population exposed to EIBIs as children (Sandoval-Norton & Shkedy, 2019). Whilst compliance might superficially seem like a reasonable goal for children, conditioning already vulnerable Autistic individuals to be unquestioningly compliant puts them at even greater increased risk for emotional, physical and sexual abuse.
We also note the existence of research which suggests that EIBIs misinterpret and thus exacerbate self-injurious behaviours in children (Shkedy, Shkedy & Sandoval-Norton, 2019), that they stifle organic communication preferences, and that such intensive “therapisation” of the home detrimentally affects the mental health and quality of life outcomes not only for Autistic children, but for their whole family by sacrificing the sense of “intactness” that is fundamental to an individual’s feelings of self-worth, self-efficacy, and self-determination (Turnbull et al., 1999).
2. Stated Outcomes of EIBIs
With these reservations about the evidenced limitations of EIBIs stated, we wish to engage with the exact outcomes that EIBIs are ostensibly evidenced to produce in Autistic individuals.
ABA and other EIBIs have, as their purpose, the “recovery” of Autistic children who become “indistinguishable from their peers” as a result of behavioural intervention (Autism Partnership, 2015).*
EIBIs are thus ostensibly evidenced to decrease Autistic “symptomology”, to “improve” Autistic behaviours, and to decrease “challenging”, “undesirable”, “problem”, “interfering”, “non-functional”, “maladaptive” behaviours (Odom et al., 2010; National Autism Center, 2015; Prior & Roberts, 2012).
Such goals, however, reward and promote the concealment or suppression of authentic Autistic self-expression, punish organic Autistic behaviours, demean Autism, and frame Autism as a disease or deviance to be cured or treated (Shyman, 2016). As Milton (2018) notes, EIBIs are “highly normative, and unsympathetic to a social model of disability”.
Take, for example, self-stimulatory behaviours (“stimming”), which are often pathologised as deviant or problematic behaviour in EIBIs. As Sandoval-Norton and Shkedy (2019) observe, EIBIs often punish stimming or reward the suppression of stimming. Given the importance of stimming to Autistic self-regulation and organic communication as a form of Autistic body language (Kapp et al., 2019), Sandoval-Norton and Shkedy (2019) are confident in asserting that:
A lifetime of being punished for certain movements, and being forced to engage in eye contact despite the physiological pain and discomfort of doing so, is psychological and physical abuse. A lifetime of being forced to sit still with no regard for actual cognitive abilities can create further emotional and psychological harm (p. 4; emphasis added).
3. Ethical Congruence: A Requirement for EBPs
Reframing Autism also notes that for practices to be considered “evidence-based”, they need to correspond with the values, preferences and ethical ideologies of parents, care providers and the Autistic individual (National Autism Center, 2015).
That is, evidence-based practices (EBPs) need to epitomise the social and ethical ideologies of Autistic clients, their parents and other stakeholders (such as the NDIS).
We question how EIBIs are consistent with the ideologies of the Autistic community, given the significant and global Autistic protest to EIBIs (Ask an Autistic, 2019).
We equally question how EIBIs are consistent with the NDIS ideology of choice and control, and adherence to the social model of disability.
As Shyman (2016) notes, ABA is inherently tied to the medical model of disability; it strips the Autistic individual of all choice and control since parent and therapist are placed in the position of absolute power to define the deviant (often organically Autistic) behaviour and eliminate it.
As Autistic adult and ABA recipient, Tim Chan, notes, the basis of ABA and other EIBIs is the medical model in which Autism is viewed as a disorder and a diseased condition, with the onus on Autistic individuals to conform and adhere to social norms, expectations and conventions. This “ableist” perspective does not respect or embrace neurodivergent functioning, and “normalism” is used mainly as a disciplining, repressive force (Waldschmidt, 2005).
That is, non-autistic behavioural therapists decide arbitrarily which behaviours are, and are not, functional or problematic, and seek to apply homogenous neuro-normative values to Autistic behaviours, without an adequate understanding of Autism or Autistic neurology.
4. Undertrained Practitioners
In this context, then, we also note that ABA practitioners (including Board Certified Behaviour Analysts) need not have specific training in Autism itself, with professional development concentrating on behaviour analysis, education or psychology. That is, ABA practitioners are not specialists in Autism, nor do they necessarily have qualifications or even basic training in Autism.
Moreover, EIBIs are highly reliant on sourcing junior therapists to provide the intervention for the majority of the 30-40 hour per week program. Such junior therapists are usually only given a few days of training before they begin working directly with Autistic children; they need no other formal or informal qualifications.
5. Potential to Do Harm
Most importantly, ABA and EIBIs are not evidenced to improve wellbeing, or to decrease mental illness or distress, or to increase self-determination, resilience, long-term independence or communication, or to boost family quality of life outcomes.
In fact, there is emerging evidence to suggest that ABA and other “normalising” EIBIs decrease wellbeing and increase mental illness, including severe psychiatric distress like posttraumatic stress symptoms (PTSS; Kupferstein, 2018; 2019).
Whilst further longitudinal study is indicated, Kupferstein’s initial research suggests that exposure to ABA significantly increases posttraumatic stress disorder (PTSD) in Autistic individuals, with nearly 1 in 2 Autistic individuals exposed to ABA presenting with PTSD, and with extreme levels of trauma severity in half of these affected individuals. Autistic adults have a 41%, and Autistic children a shocking 130%, increased chance of meeting PTSD criteria after exposure to ABA. Autistic adults and children not exposed to ABA have a 72% chance of reporting no PTSS.
Reframing Autism notes, then, that there is currently no evidence to prove that ABA and EIBIs are psychologically safe for Autistic individuals or their families. Indeed, the National Autism Center’s report (2015) expressly states that it is not concerned with identifying or documenting “any adverse intervention effects” (p. 31). There does exist evidence, however, to indicate the very real and significant potential for “adverse effects”.
We acknowledge that a significant and large body of anecdotal evidence exists to speak to the potential harm that EIBIs pose to Autistic individuals.
We hold that it is inherently ableist to ignore this immense body of anecdotal evidence because it is not peer-reviewed research (Ask an Autistic, 2019; ABA Controversy Autism Discussion, 2017; Davison, 2018).
As a society, we have an absolute duty to listen to Autistic voices, who are the only real experts in what they have experienced when exposed to EIBIs.
6. Fidelity
We also wish to question whether the principles encoded in peer-reviewed research are echoed in the reality of service provision. Given that Hassiotis et al. (2018) cite “intervention fidelity” (or, more rightly, a lack of intervention fidelity across clinicians) as a major concern, it is apposite to question how closely interventions mirror researched practice. Indeed, parent and Autistic testimony indicates a significant disparity between research and practice (Kupferstein, 2019).
Reframing Autism advocates for families to be given accurate information about the evidence-base for – and against – ABA and EIBIs.
Just as any practitioner has a duty of care to disclose risks and benefits of any intervention, so too, disclosure of the risks of ABA (including the lack of Autism-specific training for practitioners, and the significant risk of PTSS/PTSD) should be disclosed prior to commencement or exposure to ensure proper informed consent requirements.
Furthermore, Reframing Autism advocates that the burden of proof lies with proponents of ABA and EIBIs to prove through co-produced research that these interventions are not psychologically harmful.
Reframing Autism calls on the medical professionals who have a duty of care, including the NDIS and other related funding bodies, to question whether it is responsible to recommend or to fund a potentially harmful, restrictive practice, especially given that EIBIs are antithetical to a social model of disability and can offer no proof of long-term safety (Sandoval-Norton & Shkedy, 2019).
“EIBIs are antithetical to a social model of disability and can offer no proof of long-term safety.”
We ask whether the majority of the goals of EIBIs – to suppress Autistic neurology and eliminate authentic self-expression – align with the NDIS principles for choice and control.
The Australian Autistic population is experiencing a mental health crisis, with mortality rates 2.06 times that of the general population, and with suicide a leading cause of premature death.
Research shows that concealment (as promoted by EIBIs), and stigmatisation (as is communicated by the promotion of neuro-normative performance over Autistic neurology within EIBI frameworks), are key to the dire mental health statistics of the Autistic population (Hwang et al., 2019).
Reframing Autism understands that parents of Autistic children are operating from a motivation of wanting the very best for their child. Families are a vulnerable population, susceptible to being oversold EIBIs as “cures” without due understanding of the significant risks associated with these interventions.
As a society, we need to ensure safe, effective, viable and respectful information and provision of alternative service models to EIBIs, to counter the pervasive stigmatisation of Autism and to change the narrative for the benefit of the Autistic community and our families and allies.
If you would like to read some testimonials written by parents of Autistic children who started, and then subsequently abandoned, ABA and EIBIs, and their reasons for doing so, please read Parent Testimonial 1 and Parent Testimonial 2.
* We note that these statements are still currently available on the Autism Partnership website, and that Autism Partnership has global representation, including in Australia.
The Reframing Autism team would like to acknowledge the Traditional Owners of the lands on which we have the privilege to learn, work, and grow. Whilst we gather on many different parts of this Country, the RA team walk on the land of the Amangu, Awabakal, Bindjareb, Birpai, Whadjak, Wiradjuri and Yugambeh peoples.
We are committed to honouring the rich culture of the Aboriginal and Torres Strait Islander peoples of this Country, and the diversity and learning opportunities with which they provide us. We extend our gratitude and respect to all Aboriginal and Torres Strait Islander peoples, and to all Elders past and present, for their wisdom, their resilience, and for helping this Country to heal.
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