Below is a copy of the submission made to the WA Parliamentary Committee in July 2023
About Me
· Jodie Wilde
· Autistic adult
· Parent of 2 Autistic children who attend WA public primary school; and
· (Ex) early childhood and primary teacher in WA public schools, including contracts in Education Support Centre and Autism Specialist Learning Program – with a Masters of Inclusive Education
· Post-graduate research student: Understanding Autistic Identity to Improve Wellbeing and Inclusion.
Major Concerns
1. The extreme prevalence of dehumanising attitudes towards autistic students in WA schools
2. The use of ABA and ABA-based practices in schools
3. The segregation of autistic students
4. The suspension and expulsion of autistic students
5. The lack of knowledge, and understanding about autism across the whole education system – from the top down
1. The extreme prevalence of dehumanising attitudes towards autistic students in WA schools
See this blog post (written by me) https://www.accomplishinclusion.com/post/judgement-ridicule-and-worse-how-western-australian-school-staff-talk-about-autistic-students
2. The use of ABA and ABA-based practices in schools
In addition to the humiliation, dehumanisation, discrimination, bias, victimisation, and violence that autistic students are subject to by staff in WA schools, the WA government is directly contributing to the reinforcement and reproduction of these attitudes and practices through its support of ABA and ABA-based practices in WA Schools.
These practices epitomise and reinforce deficit views of autism (and disability more generally) that aim to ‘normalise’ autistic/disabled people and force conformity to ableist norms and expectations, instead of reflecting on the appropriateness of these norms and expectations and making societal/systemic changes.
ABA is NOT an evidence-based practice – despite its proponent’s claims. There are significant flaws in the research base, including:
Lack of reporting re: conflicts of interest (most studies are conducted by practitioners or researchers with direct links to ABA practice)
The reliance of the Autism CRC synthesis of autism early intervention programs is extremely concerning given Autism CRC’s links to ABA organisations https://anticonversion.medium.com/the-ndis-the-autism-crc-and-aba-therapy-in-australia-a-conflict-of-interest-93c4797f2cb7
Lack of reporting re: adverse affects (only ‘positive’ outcomes are reported – not the impact on the child’s health, safety and wellbeing)\
Measures focusing exclusively on skill acquisition and outcomes deemed important from parental and/or practitioner perspective (regardless of whether these are desirable outcomes for the individual)
Lack of social validity (appropriateness of the outcomes not considered from the perspective of the autistic person or the wider autistic community)
Lack of cultural considerations (findings are based on research focusing predominantly on White, middle-class, boys)
The Autistic community worldwide has consistently condemned the use of ABA as a practice that directly and indirectly leads to abuse and trauma – and there is a growing body of research supporting these concerns.
The fact that the WA government and Department of Education has repeatedly ignored these concerns and continues to push to expand the use of these practices highlights the systemic prejudices, discrimination, and de-humanisation that autistic people face.
The physical and mental health, safety and wellbeing of autistic children and adults is not a priority – the only concern is whether they conform to existing expectations and norms.
References: Lack of ABA evidence base:
Bottema-Beutel, K., Crowley, S., Sandbank, M. and Woynaroski, T.G. (2021), Research Review: Conflicts of Interest (COIs) in autism early intervention research – a meta-analysis of COI influences on intervention effects. J. Child Psychol. Psychiatr., 62: 5-15. https://doi.org/10.1111/jcpp.13249
Bottema-Beutel, K., Crowley, S., Sandbank, M., & Woynaroski, T. G. (2021). Adverse event reporting in intervention research for young autistic children. Autism, 25(2), 322–335. https://doi.org/10.1177/1362361320965331https://doi.org/10.31234/osf.io/zh64e
Bottema-Beutel, K., & LaPoint, S. C. (2021). Pervasive Undisclosed Conflicts of Interest in Applied Behavior Analysis Autism Literature [Preprint].
Reichow, B., Hume, K., Barton, E. E., & Boyd, B. A. (2018). Early intensive behavioral intervention (EIBI) for young children with autism spectrum disorders (ASD). Cochrane Database of Systematic Reviews, 5. https://doi.org/10.1002/14651858.CD009260.pub3
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
Rodgers, M., Simmonds, M., Marshall, D., Hodgson, R., Stewart, L. A., Rai, D., Wright, K., Ben-Itzchak, E., Eikeseth, S., Eldevik, S., Kovshoff, H., Magiati, I., Osborne, L. A., Reed, P., Vivanti, G., Zachor, D., & Couteur, A. L. (2021). Intensive behavioural inter-ventions based on applied behaviour analysis for young children with autism: An inter-national collaborative individual participant data meta-analysis. Autism, 1362361320985680. https://doi.org/10.1177/1362361320985680
Sandbank, M., Bottema-Beutel, K., Crowley, S., Cassidy, M., Dunham, K., Feldman, J. I., Crank, J., Albarran, S. A., Raj, S., Mahbub, P., & Woynaroski, T. G. (2020). Project AIM: Autism intervention meta-analysis for studies of young children. Psychological Bulletin, 146(1), 1–29. https://doi.org/10.1037/bul0000215
The Department of Defense Comprehensive Autism Care Demonstration Quarterly Re-port to Congress, Second Quarter, Fiscal Year 2019. (2019). United States Department of Defense. https://www.altteaching.org/wp-content/uploads/2019/11/TRICARE-Autism-Report.pdf?x78693
References: Autistic Community Concerns:
https://autisticadvocacy.org/policy/briefs/intervention-ethics/
https://asan-aunz.org/autistic-australians-call-for-sen-hughes-disqualification-from-the-select-committee-on-autism/
https://reframingautism.org.au/position-statement-on-therapies-and-interventions/
https://pwd.org.au/wp-content/uploads/2021/01/150720-PWDA-Submission-to-Inquiry-into-Autism-Finalv2.pdf
https://www.sentex.ca/~nexus23/naa_aba.html
https://awnnetwork.org/autistic-conversion-therapy/
References: Evidence supporting the Autistic community’s concerns regarding the harms of ABA:
Anderson, L. K. (2023). Autistic experiences of applied behavior analysis. Autism, 27(3), 737–750. https://doi.org/10.1177/13623613221118216
Freitas, B. G. (2020). Questioning Normativity: Exploring the Experiences of Autistic Adults Who Have Undergone Applied Behavioural Analysis (ABA)
Kupferstein, H. (2018). Evidence of increased PTSD symptoms in autistics exposed to applied behavior analysis. Advances in Autism, 4(1), 19–29. https://doi.org/10.1108/AIA-08-2017-0016
McGill, O., & Robinson, A. (2021). “Recalling hidden harms”: Autistic experiences of childhood applied behavioural analysis (ABA). Advances in Autism, 7(4), 269–282. https://doi.org/10.1108/AIA-04-2020-0025
Sandoval-Norton, A. H., Shkedy, G., & Shkedy, D. (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
Shkedy, G., Shkedy, D., & Sandoval-Norton, A. H. (2021). Long-term ABA Therapy Is Abusive: A Response to Gorycki, Ruppel, and Zane. Advances in Neurodevelopmental Disorders, 5(2), 126–134. https://doi.org/10.1007/s41252-021-00201-1
Shyman, E. (2016). The Reinforcement of Ableism: Normality, the Medical Model of Disability, and Humanism in Applied Behavior Analysis and ASD. Intellectual and Developmental Disabilities, 54(5), 366–376. https://doi.org/10.1352/1934-9556-54.5.366
Veneziano, J., & Shea, S. (2023). They have a Voice; are we Listening? Behavior Analysis in Practice, 16(1), 127–144. https://doi.org/10.1007/s40617-022-00690-z
Wilkenfeld, 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
3. The segregation of autistic students
The introduction of autism SLP units is a way to segregate autistic students whilst appearing to conform to the requirement to provide inclusive education.
Please see attached the comprehensive case study paper I wrote detailing the significant issues with this approach in 2021 (the paper received a high distinction and selected to use as an exemplar for future students).
4. The suspension and expulsion of autistic students
This concerns relates directly to my experience as a parent of an autistic child who has been repeatedly failed by the education system. A (very) brief look at his school experience so far:
2019:
Entered kindy (aged 4) and began experiencing (behaviour) difficulties in term 2
No support or intervention suggested or provided – I produced a behaviour profile and IBP in June 2019 to attempt to address this (and began the process of diagnosis)
I engaged with an external psychologist to work with the teacher to support my son – this offer was never accepted and other concerns were repeatedly dismissed
2020:
Jan –
I provided a strengths and needs profile for the new school teacher
Feb –
First suspension received in week 3 (25th Feb) of pre-primary (aged 5) for challenging behaviour
March –
School psych engaged early March to work with my private psych; psych requests use of Team Teach – I refuse (this refusal is ignored)
Repeatedly suspended throughout term 1 (several as a direct result of using Team Teach and other ‘strategies’ his psych and I indicated would escalate his behaviour)
April –
SSEN:BE engaged (at my request) follow post-COVID lockdown in term 2; this proved to be an extremely bad decision as it has resulted in my son’s PTSD
May –
my son receives an ADHD diagnosis
June –
My son develops extreme anxiety – manifested In behaviour and physical illness
I (again) provided the school with a comprehensive list of support strategies, developed in conjunction with private psych
The documents developed by SSEN:BE are presented and raise significant red flags regarding the ‘strategies’ and approaches proposed; consulted private psych to review
Comprehensive feedback provided with suggested (appropriate strategies); SSEN:BE refused to adopt many of the most important ones; discussion continue into term 3
July/August –
The school begin implementing SSEN:BE plan resulting in significant and major escalations and suspensions as a direct result of being physically restrained by adults
I contact DDWA to discuss the issue of suspension and disability discrimination
I request access to all records relating to my son – these have never been provided in full
I make an official complaint to Regional Office and they support the school
I contact Sussex Street Legal for advice re: making a disability discrimination complaint to the Human Rights Commission
September –
Private psych contacts SSEN:BE to provide support – they refuse to engage with him
October –
Regional office officially dismisses my complaint and I begin the process of escalating to the Deputy Director and Human Rights Commission
A new principal begins at the school and I agree not to proceed with my complaint to allow them time to make improvements
Continued discussion with SSEN:BE regarding the (in)appropriateness of their approaches
November –
School continues to use ‘positive handling’ meaning a 5 year old is being physically restrained/moved by 2 fully grown adults
My son frequently has cuts/scratches from these encounters – he is suspended again (three times) for defending himself in these situations
I again provide the school with a significant number of strategies that they should use instead
December –
My son receives a suspension for the final two days of school – ending the year on a deep low and guaranteeing a bad start to the following year
·2021:
Jan –
My son meets his new teacher briefly the day before school starts
Feb –
11th Feb starts to refuse to attend school following inappropriate approaches
March
Son is (unofficially) suspended for an incident during recess when he was supposed to have EA support
The practice of unofficial suspension (calling me to collect him early) continues as standard practice throughout the year
May –
My son’s behaviour ‘increases’ and he is again suspended;
On investigation, the school has removed several of the strategies I gave them (and were working well) without discussion with me
June/July
SSEN:D engaged to support school in implementing appropriate strategies to support my son
These strategies are aligned to my suggested strategies and work well for the remainder of the year
November –
My son receives an official ASD diagnosis
I am verbally assaulted on school grounds regarding my son’s ‘behaviour’ (towards an older student)
The parent in question is allowed to remain a frequent volunteer at school events
2022:
Feb/Mar –
School continue the unofficial policy from 2021 of calling to collect early whenever they are finding my son’s behaviour challenging (25th Feb, 28th Feb, 4th Mar, 17th Mar, 21st Mar)
April-June
Son suspended multiple times
Son’s heightened anxiety returns – manifests in school refusal and physical symptoms
Son is rarely in class when he is in school – spends most of his time outside
July –
School attempt to suspend son for ‘hitting’ a staff member; I saw the incident and how he was roughly treated (physically) by the EA who didn’t know me; son’s arm is injured; school backs down
Becomes apparent that the SSEN:D strategies from 2021 have been abandoned
August-September -
School continues to send son home early
Son’s anxiety continues to increase – resulting in greater school refusal and more time outside the classroom when he does attend
October-December -
Classroom teacher is reassigned every Friday for the remainder of the school year; a relief teacher that my son has previously had a bad experience with is given the class on Fridays
Son is suspended twice while the relief teacher is in the class
Son starts to refuse to go to school/need collecting early on Thursdays as anxiety about Friday teacher increases significantly
Frequent calls to come into school to ‘reset’ son; often out of class
stop taking him into school on Fridays
2023:
Jan –
I provide the school with updated information re: how to support my son
Feb –
I request a meeting with son’s new EA’s (5 of them) to make sure they are all on the same page re supporting my son; the school refuses my request
Son suspended 21st Feb
Receive a copy of son’s IEP; highly inappropriate and clearly demonstrating the lack of knowledge and understanding of autism (see concern number 5 below)
Provide feedback to school re IEP; receive limited response from the school
Son again suspended 28th Feb
March –
Son again suspended (7th March, 28th March)
Continue to receive phone calls to collect my son early/reset him
April -
Son suspended 4th April for the reminder of term 1
Son returns to school for term 2 on 26th April; suspended after 1 hr 30 mins in school; request meeting to dispute suspension
SSEN:D re-engaged to support the school and begin to observe my son
Case conference 27th April with SSEN:D
May -
Meeting to discuss son’s suspension on 26th April not granted until May 19th
School psych re-engaged to observed son and support the development of IBP
June –
Meet with school re: IBP – some significant changes needed to reflect appropriate strategies
Meet with SSEN:D to discuss implementation of strategies going forward
5. The lack of knowledge, and understanding about autism across the whole education system – from the top down
This is a immensely widespread issue that I could speak to at length. Some of these are illustrated in the following blog posts (written by me)
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