The NDIS, the Autism CRC, and ABA Therapy in Australia: A Conflict of Interest?
This article should be considered as formal feedback on the NDIS Consultation Paper: Interventions for children on the Autism spectrum, released in March 2021.
1) Context for our feedback: What is ABA?
a) To provide context for the feedback that will follow, we must first touch base on the ‘treatment’ for Autistic children known as Applied Behavioural Analysis (ABA).
i. ABA is the practice of applying the psychological principles of learning theory in a systemic way in order to modify behaviour. The practice is used in special education, the ‘treatment’ of Autism Spectrum Disorder (ASD), and in animal training.
ii. ABA uses operant conditioning (rewards and consequences) to get an Autistic child to comply with requests to stop certain behaviours. At times ABA is used to try to extinguish harmless self-soothing Autistic behaviors such as rocking, hand flapping, and pacing.
b) Many adult Autistics believe ABA causes harm to the long-term mental health of an Autistic child; this is because it forces the child to comply while mostly failing to address the underlying need of the behaviour. ABA encourages a child to mask their true needs and live a culture of doing whatever others ask of them — which can be dangerous from a potential abuse perspective.
i. One 2018 study found that of Autistic respondents to an online questionnaire, almost half those who had been exposed to ABA displayed symptoms of post-traumatic stress disorder (PTSD). Respondents of all ages who were exposed to ABA were 86 percent more likely to meet the PTSD criteria than respondents who were not exposed to ABA.
c) ABA was developed by Dr Ivar Lovaas, who also pioneered gay conversion therapy — now banned in Queensland, the ACT and Victoria due to the mental harm it causes to ‘clients.’
d) Many ABA providers claim things have changed, and modern ABA isn’t ‘that bad’ — many adult Autistics disagree.
e) ABA is arguably the primary industry servicing Autistic children in the USA, and it is becoming increasingly prevalent in Australia. In the USA, powerful ABA groups successfully lobbied to get ABA funded by insurance in all fifty states.
f) ABA is an extremely profitable form of therapy: clinics usually stress the need for a child to complete at least 20 to 40 hours of therapy every week, and day-to-day therapy is often provided by workers with a Certificate III (in Australia) or no formal qualifications at all (in the USA) and some brief online training. This means that labour costs are generally low, unlike other therapies that might require clinics to hire highly qualified allied-health professionals. Partially because of this profitable business model, ABA expansion into new markets in other countries has been actively pursued for a while now.
2) The existing summary of Autism CRC member expertise and declared interests does not cover organisational-based potential conflicts of interests
The Autism CRC (Cooperative Research Centre) is the Australian research council whose November 2020 report, Interventions for children on the autism spectrum: A synthesis of research evidence, has been used by the NDIA (the government organisation that runs the NDIS) to justify proposed changes to the way they plan to fund treatment for autism. The Autism CRC’s existing declarations, found starting on page 4 in the report, do not mention that:
a) The following ABA-aligned entities are amongst the original essential participants of the 2012 Autism CRC bid for funding (see page 2, paragraph 11 in link):
i. the AEIOU foundation — a provider of ABA based, centre-based, full-time ‘early intervention’ services for children. AEIOU is based in Queensland but is branching out into other states (an ACT facility is opening in mid-2021).
ii. Griffith University. This university is ABA aligned. It offers students a Masters of ABA. It has an ‘Autism Centre of Excellence’ (ACE); however, this centre was partly founded by AEIOU. Several AEIOU branches are even located at Griffith University campuses.
b) ABA providers are amongst current financial donors to the Autism CRC. The AEIOU foundation donated $50,000 to the Autism CRC in the 2019/2020 financial year (page 32 in link).
c) ABA-aligned individuals are on the Autism CRC board:
i. Scott Reading, an Autism CRC board member, has also been a member of the AEIOU Board of Directors since 2007. The Autism CRC web page in the link also states: “AEIOU is an essential participant of the Autism CRC and is a not-for-profit organisation which was established to deliver high-quality early intervention therapy and care.” (Details of Scott Reading’s other lobbying projects are provided later in this article.)
ii. Adrian Ford is a former ASPECT Chief Executive and is sympathetic to ABA. Mr Ford resigned from ASPECT in 2019, despite calls for his resignation in 2016 following controversy over allegations that an ASPECT facility built a coffin-like structure for containing autistic children. He then moved to the Autism CRC.
3) The existing summary of member expertise and declared interests uses language that obfuscates important information
The full Autism CRC paper is available here. It should be noted that this full paper is not easily available to the casual reader unless they have knowledge of this direct URL; the Autism CRC website requires readers to register and log in to read it.
Applied Behaviour/Behavior Analysis is discussed twice in the paper.
However:
a. AEIOU (an ABA provider) is mentioned 4 times
b. Early Start Denver Model (ESDM) is mentioned 5 times. ESDM is ABA influenced.
c. JASPER (Joint Attention, Symbolic Play, Engagement and Regulation) is mentioned 3 times. JASPER is a ‘treatment’ that is complementary to ABA.
4. The existing summary of member expertise and declared interests disperses related information which dilutes and obfuscates the overall collective impact.
For example:
(a) The declaration for David Trembath, the project deputy chair, includes the following information spread out over 8 pages:
i. “Involved in … applied behaviour analysis (Graduate Certificate, Masters)”;
ii. A grant, under review, was submitted in 2020, which includes the AEIOU Foundation as part of the proposed reference group;
iii. “Advisory Committee member (2014-current), the AEIOU Research and Innovation Committee… Role is unpaid. David has suspended involvement for the duration of the current grant.
iv. “…currently a member of…. The Association for Behaviour Analysis Australia (to maintain current knowledge of the profession as part of my university responsibilities).”
To put the above scattered information into perspective: Mr Trembath’s attendance was advertised at an October 2019 seminar advocating ABA. Mr Trembath was reported to be “very much an advocate in the field of Applied Behaviour Analysis.”
So What?
Some believe that the ‘evidence-based practice’ now being promoted by the NDIA has the potential to be biased due to conflict of interests of the participating parties and due to the nature of research funding. From a 2018 letter to the British medical journal about evidence-based medicine (EBM):
We know that the Autism CRC is affiliated with ABA, including the ABA provider AEIOU.
We know that members of the Autism CRC team who authored the Interventions for children on the autism spectrum: : A synthesis of research evidence report, now being used by the NDIA to make and justify new directions in funding decisions, are ABA affiliated. The Project Deputy Chair is an advocate of ABA and a member of the Association for Behaviour Analysis Australia.
We know that the Autism CRC report:
o Makes multiple references to ABA, however does not disclose that there are substantial concerns regarding the negative impacts of ABA on the mental health of Autistic children. The report also does not disclose that there has been a lack of available research that investigates concerns that ABA has a negative impact on the long-term mental health of Autistic children.
o Did not reference an October 2019 interim report from the US Department of Defense (DOD), which through the TRICARE insurance program oversees the provision of Autism services to military families. This report indicated that “76% of TRICARE beneficiaries in the ACD had little to no change in symptom presentation over the course of 12 months of applied behavior analysis, with an additional 9 percent demonstrating worsening symptoms.”
o Did not reference the finalised June 2020 US DOD report that mentioned in regards to ABA: “the changes are small and may not be clinically significant” and that:
“What can be interpreted with confidence is that the number of hours of ABA services rendered did not have the intended impact of symptom reduction on the PAC scores. This lack of correlation between improvement and hours of direct ABA services strongly suggests that the improvements seen are due to reasons other than ABA services and that ABA services are not significantly impacting outcomes.”
How can practice be “evidence-based” if conflicting evidence is left out of consideration?
We know that Scott Reading, member of the AEIOU and Autism CRC boards, was also Managing Director of SwingVoters.Org, which aimed to influence the political landscape and policy outcomes in the 2018 election. We also know that he runs an active lobbying firm called Horrizen that boasts of offering “detailed policy examination along with advocacy and lobbying services to provide our clients with either a disputation for change or an attentive case for the status quo.”
This lobbying company was not declared in the Autism CRC paper and the information about these connections, although technically public, depends on a member of the public’s ability to do a /whois search.
We know that following the November 2020 Autism CRC publication of Interventions for children on the autism spectrum, the ABA industry in Australia appears to have interpreted the report as receiving the greenlight from the Government to expand the use of ABA in Australia.
We know that NDIA now outlines ABA on its website, without any accompanying warning as to the reported long-term negative health impacts to Autistics. We know that this has been applauded by the ABA industry.
We know that ABA is an extremely profitable form of therapy, and that its expansion into Australia might be motivated by, among other things, financial incentives.
Recommendations
We are not necessarily saying anything nefarious has occurred, just that the optics are not good.
We recommend that in revisiting its contract arrangements with the Autism CRC, the NDIA seeks additional assurances from the organisation to ensure that:
1. The Autism CRC’s research product is produced with independence from, and without bias towards, the ABA industry. The Australian public needs to know that Government policy in relation to Autism is being informed by what is in the public interests (particularly for Autistic Australians) and not corporate interests (particularly in relation to ABA-aligned providers).
2. The Autism CRC’s engagement and research with the actually Autistic community equals or surpasses its engagement with service providers, particularly those involved in the ABA industry. At the current time, it appears that Autism CRC’s engagement with the ABA industry is substantially disproportionate to their engagement with the Autistic community.
We also recommend that any NDIA pages mentioning ABA include a warning (similar to a health warning on medication) informing the reader that further research is required to investigate concerns that ABA may have negative impacts on the long-term mental health of Autistic children.
Thank you.
