Education and Health Standing Committee
Western Australian Parliamentary Inquiry Into Support for Autistic
Children and Young People in Schools
Background
My name is Dr Sarah Bernard and | am a disabled, autistic doctor working as a Specialist Geriatrician on
Whadjuk Noongar Country, Boorloo, at Sir Charles Gairdner Osborne Park Healthcare Group. My
professional and advocacy connections to the autistic and disability communities include:
e Appointment to the upcoming Department of Education (DoE) Disability and Inclusion Advisory Group
e Contribution to the development of East Metropolitan Health Service (EMHS) Improving care for patients on the Autism Spectrum — First Steps initiative
e Advocacy and inclusion project collaborations in the last 12 months with: Western Australia (WA)
Disability Health Network, North Metropolitan Health Service Diversity and Inclusion committee, Doctors
With Disability Australia, Autistic Doctors International, Association for the Study of Medical Education,
Society for Hospital Pharmacists Australia, Yellow Ladybugs, and the grassroots advocacy group and podcast “Square Peg Round Whole” which aims to improve inclusion for neurodivergent students and
teachers within the Australian education system.
Terms of Reference Addressed:
Term of Reference 1.
“The prevalence of autism in Western Australia and projected demand for support in Schools”
The prevalence of diagnosed autism in WA is increasing, as it is globally.1 Improved autism detection drives this increase, particularly in marginalised and intersectional societal groups.” This includes, but is not limited to, racial, ethnic and gender minorities, Aboriginal and Torres Strait Islander people, and regional/remote dwelling communities.? These groups experience more barriers to accessing an autism
diagnosis, and greater disadvantage in the social determinants of health, including education.”
Autism prevalence estimates are impacted by “camouflaged” (sometimes called “internalised”) autism presentations. Camouflage refers to learned strategies some autistic people develop in response to unsupportive environments.*® It involves suppressing or disguising natural autistic ways of being, in order to “pass” as non-autistic. The advantage of camouflage is avoiding the risks of discrimination and abuse that are associated with being autistic.° Successful camouflage can grant safety, but is associated with delays in
diagnosis, which in turn can delay appropriate support. ° This means autistic people who camouflage their
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disabilities may be at higher risk of having their needs unmet in school. Their disabilities may be less apparent to outsiders, however support for these individuals should not be viewed as less worthy, or “depleting the pool” of resources. People across the full experience of disabilities have protected rights to support (known as “disability adjustments”) enshrined in federal legislation.® In addition, support for camouflaged autistic people may be life-saving, since camouflage is associated with significant mental ill health and suicide risk.”® Autistic young people and adults die more often from suicide than the general population, therefore both autism and autistic camouflage are important issues for the mental health of WA
school students.”
The negative attitudes and stigma toward autistic people that drive the need to camouflage are often unintentional. Autistic people are judged more negatively than non-autistic people on “thin slice judgements”, the automatic judgements and biases we all make about others, similar to “first impressions”.?° Therefore it is important for non-autistic people to consciously address their underlying
automatic negative attitudes and beliefs about autistic people.
0.8
mTD ae = ASD
0.6
Mean Rating
& & EF G
° bp
o
How Awkward How Approachable Likelihood of Friendship
Rating
Figure 1. from Neurotypical Peers are Less Willing to Interact with Those with Autism based on Thin Slice Judgments”®
Individuals with autism (ASD - red) are immediately judged more negatively than TD (Typically Developing controls - blue) in each of the three rating categories (all ps < 0.001).
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Recommendations:
The issues of increasing autism prevalence, and the underdetection and undersupport of autistic students
are interrelated. A multi-component response is needed:
- Strategies that focus on universal design for learning (UDL). These benefit all autistic and disabled students, including those yet to access a diagnosis. We need “upstream” solutions to prevent the downstream problems of distress behaviour, exclusionary discipline, mental ill health and suicide. UDL makes education more equitable. It does not disadvantage non-disabled or non-autistic students. In fact it is likely to benefit all students by reducing demand for costly individual support, because support is embedded and freely available throughout the school. This has important implications in terms of
economic and efficiency benefits to schools, government and taxpayers.
- Strategies that reduce stigmatising beliefs and attitudes toward autistic. Stigma underpins the excess bullying, abuse, discrimination, mental ill health and suicide experienced by autistic students.>”%91° Stigma drives the need for autistic students to camouflage.>?° Students who know they are autistic from a younger age and form positive self-views and autistic identity, have better outcomes when they reach
adulthood.“?
- Strategies that promote overall diversity and inclusion for students and staff, and the education sector more broadly. This acknowledges and addresses the multiple disadvantages faced by autistic students who identify with additional marginalised and intersectional societal groups.”? This overlapping disadvantage is based on attributes including but not limited to: Aboriginality, gender identity, sexual
orientation, race, ethnicity, socioeconomic status, and regional and remote geographic location.*?
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Term of Reference 2.
“Current support available for autistic students in WA schools, including consideration of how:
Evidence-based practices are implemented across the school system;”
There is a disconnect between advances in autism research/intervention and practices in schools. Professional regulatory bodies for NDIS-funded therapists are responsible for ensuring evidence-based,
quality supports are delivered to autistic children.
In WA schools, when it comes to implementing best practice/evidence for supporting autistic and disabled children, it is left to individual School Principal discretion.** Principals allocate funding for individual students with disabilities, including autistic students. In 2022 this was $400 million.*? Concerningly, there is no mechanism to ensure consistency, quality, and accountability of support from one school to the next. There are no processes to audit adherence to the DSE 2005 or expert consensus guidelines. There is no public
reporting of the supports used by schools, their impact on student outcomes, or cost effectiveness.
“School supports are co-ordinated with other service areas to respond to the needs of autistic students
and their families:”
Supports for autistic students are disability adjustments, governed by federal legislation. ®? This requires schools to consult with students or their associates (parents) about disability adjustments,® including whether or not an adjustment is reasonable, before it is implemented.®?? Requested reasonable adjustments must be implemented unless the school identifies through consultation a less intrusive and no less beneficial alternative, or shows the adjustment would cause unjustifiable hardship.®? Schools need to record disability adjustments and consultation, such as in Individualised Education Plans (IEPs).?? The Disability Royal Commission and the 2020 review of the DSE revealed major issues with lack of consultation and failure to
implement disability adjustments by WA schools.?%*¢
The unmet needs of autistic students and those experiencing intersectional disadvantage are revealed in their overrepresentation in school suspensions, shown in Figure 2 (data searched from 2022 parliament hansard?”7®1° by Square Peg Round Whole advocacy group because WA does not publicly report suspensions disaggregated for disabled or Aboriginal students, unlike other states). This lack of reporting reduces
opportunity to target inequity and close the gap.
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2021 Suspensions NSW and WA?718,19
20% 15% 10% oe. aah
Disabled Aboriginal and
Torres Strait
Islander
mNSW WA
Figure 2: School Suspensions in New South Wales and Western Australia in
2021 comparing all students, disabled students and Aboriginal and Torres
Strait Islander Students
Term of Reference 3:
“Strategies in other jurisdictions that support school systems to respond to the needs of autistic students
and the applicability of those strategies to WA.”
A summary of evidence-based strategies to support autistic students that have been used in other jurisdictions is offered below. At present we do not know which supports work best, for which autistic students, in the WA context. Schools are not yet undertaking consistent quality improvement or research
initiatives to determine this or keep up with new research discoveries.
- Neurodiversity Affirming Support: The 2023 Autism Cooperative Research Centre (Autism CRC) National Guideline for supporting the learning, participation, and wellbeing of autistic children and their families in Australia recommends supports for autistic children and young people be neurodiversity affirming.”° Originating within the autistic community, the neurodiversity movement is part of the disability rights movement.”?”2 It considers autistic people as a minority group, who are neurodivergent (diverging from the neurotypical majority).”° It views the disabilities of autistic people through a social model of disability framework.”+? Neurodiversity affirming supports
therefore uphold these central ideas:
i. Neurodivergence and disability are valued aspects of a diverse human society. ii. Autistic people are disabled when environments and societal systems are not designed to support
our autonomy, choices and opportunities.227”3
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iii. Autistic people are a marginalised societal group, and they experience this disadvantage in a compounded way if they belong to other groups which also experience discrimination (intersectionality).”7?
iv. | Autistic and disabled people should be involved in all decision making and design that affects
21,22,23
us
- Neurodiversity Education: This is a neurodiversity affirming support. The whole school (students and teachers) learn about neurodiversity, neurodivergences (such as autism), stigma and universal design.2*7° People who receive neurodiversity education demonstrate improved knowledge of autism, reduced autism stigma and improved attitudes to use of UDL.**?° Greater autism knowledge is associated with better first impressions of autistic people (reduced bias) and the neurodiversity education is most effective when it has been created
by individuals who are neurodivergent themselves.2*°
- Adapting the School Environment to Autistic Needs: Groundbreaking Australian autism early intervention research by Whitehouse et al tested an intervention to improve relationships between children and caregivers.’ It delivered significant child development benefits.”” A the start of the study, it wasn’t known whether or not the children receiving the intervention were autistic. They were siblings of diagnosed autistic children, who were themselves showing early signs that may or may not have been autism.”’ The intervention involved coaching caregivers about how to respond to these differently developing, differently communicating, children.2” The caregivers were taught to encourage their childrens naturally different (neurodivergent) ways of playing and communicating.” The
main discoveries were:
i. Success of universal design, as the intervention created an environment that was responsive and supportive and helped all participating children, regardless of whether or not they ended up with a diagnosis of autism.?’
ii. Adapting adult responses to suit the child was very effective, (not changing the way an autistic child behaves, plays, learns and relates to others).?”
- Interoception training: Interoception is the ability to identify and understand internal states of the body, such as hunger/thirst, hot/cold, need to toilet, and emotions. Autistic and disabled students, as well as students with a history of trauma more often experience internal states of discomfort.8 This can be due to abuse, neglect, bullying, sensory overwhelm, communication disabilities, or a lack of stimulating activity.2® Repeated over time, these
experiences lead students to dissociate (“switch off from” or suppress) feelings of discomfort.78
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Dissociation is an effective survival/threat response, but the downstream consequence is failure to learn mature sensing: to notice discomfort, and take action before overwhelm occurs (fight, flight, fawn or freeze).?° However with support, all students can gradually learn to “tune in” to their bodies and take action
early and appropriately for hunger, thirst, boredom, embarrassment or frustration.”°
Autistic researcher Dr Emma Goodall designed and studied a school-wide interoception program for classroom behaviour management.”® She demonstrated positive outcomes on suspensions, learning and pro social behavior in South Australian schools.2® Teachers were trained in interoceptive techniques, and led their classes through brief interoception activities as a regular part of the school day.” The program was scalable, feasible in mainstream and education support settings, with training resources freely available on
the South Australia Department of Education website.7®
- Collaborative Proactive Solutions: CPS is trauma-informed, suitable for autistic students and other students with and without disabilities.?”7° It
can be delivered as an individual student or whole school behaviour intervention.2®7°
CPS engages teachers and students in a collaborative process of addressing disruptive behaviour, by proactively targeting the underlying causes of the behaviour.”®° This distinguishes CPS from other commonly used programs such as School Wide Positive Behaviour Support (PBS), in which school staff decide on behaviour standards, describe them to students, then deliver rewards and punishments accordingly.*° In PBS, behaviours are considered to be dependent on the environment, rather than the inner experiences, motivations, ideas and relationships of students.°° By contrast, in CPS behaviours are framed as unsolved problems due to lagging skills, and are addressed by collaboratively leveraging student ideas,
motivations, and positive student-teacher-relationships.7?°
CPS adds to the body of research that shows quality student-teacher relationships are “a critical protective factor for classroom success” for autistic students.*? Attuned, warm student teacher relationships are
associated with improvements in autistic student behaviour and academic engagement.”
- Behaviourist approaches:
Applied Behavioural Analysis (ABA)
A common teaching and behaviour intervention for autistic students in WA, either standalone or as a
component of other programs.
ABA is a behaviour change process based on operant conditioning theory.”??? Operant conditioning theory developed through animal experiments in the early-to-mid 1900s based on the premise that all human
behaviour is intentional and contingent on interactions with the environment.2??2 The theory views non
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environmental drivers of human behaviour (ideas, beliefs, motivations and relationships) irrelevant to
behaviour change.”
Concerningly, this disregards key developmental theories such as child-caregiver attachment, and evidence that student-teacher relationships are critical to learning.2°** ABA does not consider neurodiversity, or the
autonomy of autistic people, in the delivery of behaviour modification.”?
There is no measurable evidence in high quality human research that ABA performs better than any other intervention for autism, so we should question its widespread use in WA schools.** Autistic Doctors International is one of a number of advocacy groups who have published concerns ABA research is not neurodiversity affirming: it lacks reporting of adverse outcomes, contains undisclosed conflicts of interests,
and uses punishments including extreme practices such as aversive electric skin shocks.”°
Positive Behaviour Support (PBS)
Used in many WA schools for behaviour management. PBS is based on the principles of ABA and operant
conditioning theory, focusing on environmental drivers of student behaviour.2°+
PBS did not improve behaviours that challenge in autistic people, or people with intellectual disabilities in recent randomised controlled trials.3*> In a large study comparing outcomes across 2, 365 schools in Norway, schools that utilised PBS were compared to schools who did not utilise PBS. The researchers found no benefit of PBS on bullying, student wellbeing, student behaviour, student academic performance or test
scores.°
Australian research has recently highlighted the ableism inherent in PBS matrices used in government schools.2°A recent high profile UK report recommended PBS is unsuitable for the majority of neurodivergent
people.*®
The Irish Parliament Joint Committee on Disability Matters published its concerns that ABA and PBS do not align with human rights in the 2023 Report on Aligning Disability Services with the United Nations Convention on the Rights of Persons with Disabilities (CRPD),? noting “Behavioural interventionist therapies are ultimately founded on modifying disabled people’s behaviour to meet goals decided by others; often to conform more closely with neurotypical communication, behaviour and/or norms and therefore the Committee believe cannot uphold the UNCRPD principles of autonomy, dignity, right to identity and freedom
from non-consensual or degrading treatment.”
Recommendations
- Develop DoE policy and guidelines to improve the experience of autistic and disabled students, families and employees. This should involve co-design and participatory research approaches which are
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recommended for engaging with marginalised and intersectional populations.’*?° Partnerships with universities, other government departments (health, justice, community services) and advocacy groups should be expanded. The upcoming DoE Disability and Inclusion Advisory Group and Consultative
Committees formed by the Department of Education are a positive development.
Improve school and DoE performance reporting on education equity. The impact of taxpayer funded supports for autistic, disabled and other educationally disadvantaged students should be measurable and transparent. The following suggestions are offered:
e = Annual, publicly reported suspension data disaggregated for students with disabilities and Aboriginal students, bringing WA into line with other State education departments across the nation.®
e Develop additional education datasets to monitor and target education equity, such as:
i. Home-schooled students disaggregated for students with disability ii. Use of restraint and seclusion, disaggregated for students with disability and Aboriginal students iii. Adherence with DSE 2005 standards for disability adjustments, in particular consultation with students and families iv. Progress toward CRPD targets: e Inclusive education (which is defined as an end to segregated education).*”° e = Elimination of restrictive practices and restraint use in students with
disabilities.*°
Resource Principals and teachers on the frontline to implement quality improvement projects. This will engage schools in analysing their own data, to generate ideas and test solutions. e Invest funding and human resources in Principal and teacher training and engagement in quality improvement. e Consider reduction of classroom student number limits. This can reduce teacher administrative burden and increase teacher availability for professional development opportunities: research, quality improvement and innovation. Reduced class sizes may also increase uptake of the high
impact teaching strategy of small group teaching, which will benefit all students.
Identify which evidence-based, UDL, neurodiversity affirming supports work best in the WA school
context. Suggested approaches:
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e Ensuring supports in schools align with the Autism CRC Guidelines on Supports for Autistic Children and Young People”?
e Neurodiversity education for staff and students. The neurodiversity education programs should be created and delivered by neurodivergent individuals because this delivers the greatest impact, and upholds co-design principles.
e Strategies that adapt the school environment, curriculum and the responses of teachers and other students to be more supportive to autistic children, rather than focus on changing the way autistic children interact, relate and learn.
e School behaviour management should utilise trauma-informed supports, that foster attuned, psychologically safe, student-teacher-relationships. For example, Collaborative Proactive Solutions, and whole school interoception training.
e Regularly review evidence for behaviourist approaches such as Positive Behaviour Support and Applied Behavioural Analysis. Growing concerns about these approaches from researchers, autistic community and human rights groups should be heeded.”?3“3”38 Additionally, these approaches shouldn’t be used simply because school staff may be more familiar with them. If a different reasonable adjustment is recommended for a particular child in consultation with their associates and NDIS-funded therapists, it should be implemented for the child’s individual
needs, in keeping with the DSE 2005.°
The gaps between contemporary evidence for neurodiversity-affirming supports for autistic students, and those currently used in our schools, should be reduced. Students and teachers in Western Australia deserve to benefit from best evidence
and new discoveries.
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