Submission 39 — Kiind (formerly Kalparrin) — Inquiry into support for autistic children and young people in schools | External submission

kind.

Formerly Kalparrin

Submission to the Education &

Health Standing Committee

Inquiry into supports for autistic children and young people in WA schools.

July 2023

Kiind | operated by Parents of Children with Special Needs Inc

Perth Children’s Hospital Ground Floor, Family Resource Centre

15 Hospital Ave, Nedlands WA 6009

C/- Child and Adolescent Health Service, Locked Bag 2010, Nedlands WA 6909

Phone (08) 6164 9806 Email hello@kind.com.au Web Kiind.com.au

Kiind is endorsed as a deductible gift recipient (DGR) under item 1 of the Income Tax Assessment Act 1997

We are Kiind

Kiind is a family-led, independent, peer support organisation with more than 36 years of operation.

We support more than 6,000 families in Western Australia who are caring for children with disability, developmental delay, autism, genetic, rare, undiagnosed and/or complex health conditions.

We walk with families, amplify their voices, and empower them with knowledge and connections to reach their full potential.

Through our systemic advocacy, we help decision-makers to understand the lived experience of children with disability and their families. We seek to influence policy, legislation, and service design.

Discussion

In preparing this submission, Kiind was privileged to hear from over 1,100 parents of autistic students about their experiences of schools in WA. What we heard was resoundingly that schools are chaotic and at times hostile environments for autistic children and young people.

These environments are experienced as  noisy, crowded,  confusing, with too many

transitions. Students are expected to adapt to multiple changes throughout the day switching subjects, teachers, classrooms, seating plans, and all the changing expectations and social nuances that come with these transitions.

Parents report on the whole that primary schools are better equipped for meeting the needs of autistic students than secondary schools, perhaps due to fewer transitions and more consistency in teachers and Education Assistants.

“In primary school it really came down to what teacher my child had that year. The years that went well were when the teacher and I had a really good working relationship, when the teacher had authority and backing to change things in classroom, when teacher gave me advance warning and extra info about extra curriculum/changes etc to help plan/forewarn child so child could still participate, when the therapists could support the teacher with specific strategies and the teacher could feed back info to the therapists.” – Parent

In many instances, the classroom and teaching adjustments required for an autistic student to receive inclusive education are not adequate to meet student needs. In these circumstances, children as early as pre-primary are withdrawn from school, and begin a home education journey.

“We have home educated from the very beginning - looked at variety of local schools and felt so dismayed about how little support and flexibility they could provide. His mental health was already so poor at kindy age, and we felt like no school could ever manage the level of accommodations needed to make school a place where he would actually thrive.” - Parent

In the private Catholic and independent school systems, we hear stories of gatekeeping and discrimination, such as suggesting a child’s needs may be better met in another school

setting, or insisting that parents need to supply and fund their own Education Assistant (EA) where the school is not meeting the student’s support needs.1

Autism is a spectrum consisting of strengths and difficulties unique to each person. The education system including education supports tend to treat all autistic students the same. Parents are often expressing that they had to pave the way for their child’s needs to be met in school, advocating for new approaches or interventions to support their learning, always backed up by research or specialist’s reports to demonstrate that there is evidence for what they propose. Many schools are not working to support the strengths and needs of autistic students.

“My son has autism and ADHD. He is very bright (almost gifted) in maths. Despite repeated pleas by myself and the learning support co-ordinator at the time, the principal refused to allow my son to be extended or include maths on his IEP. When he was in Year 2 nominations were asked for the PEAC program. The school refused to consider my son based on his autism diagnosis.” - Parent

Almost all parents we heard from described a large degree of ‘fighting fires’ with educators and trying to advocate for the needs of their children. We heard many stories of ‘school shopping’ where parents attempt to find a better fit for their autistic child, and their frustration in discovering the lack of truly suitable, inclusive educational options in WA across both public and private systems.

Many staff are great at providing adjusted activities (and listening to advice and ideas) to include all students, but other staff think of adjustments and inclusion as an afterthought and leave the student with a disability to do an alternate activity, often separate to their peers. Staff often think that some curriculum areas will not be possible for students with a sensory disability, and that the students will not be capable.2

Most families would prefer mainstream inclusion for their autistic child, but as their experiences of mainstream schools are not inclusive in practice despite inclusive policy, some are seeking segregated options in an attempt to meet their child’s educational needs. For example, there is a push for a specialist Autism school in WA to align with the choices in other states such as ASPECT schools in NSW. Education experts say it’s not about segregation, but providing options.3

“My biggest concern after mainstreaming to early Year 7 and now having to attend special ed (because he needs the added support and can’t keep up) is under stimulus. Regression, lack of challenge and total shift from learning to more of a life skills focus. Reading and writing have regressed hugely…content is so basic it’s

1 https://www.abc.net.au/news/2023-06-01/concerns-some-schools-are-contravening disability-legislation/102422564

2 Final Report of the 2020 Review of the Disability Standards for Education (2005) 2020. 3 https://www.abc.net.au/news/2022-07-11/parents-fight-for-autism-school-in perth/101221476?utm_campaign=abc_news_web&utm_content=link&utm_medium=conte nt_shared&utm_source=abc_news_web

almost boring. Further friendships are hugely difficult for my social kiddo amongst so many who are not.” – Parent

Autistic students are often not eligible for Education Support Units or schools as they do not have intellectual disability or profound disability. Where autistic students attend Education Support as their ‘best fit’ option, there can be difficulty forming friendships with peers, especially where there are communication differences, and the curriculum may not be suited to their academic abilities.

“Child cannot navigate large local school due to lack of skills (e.g. school so large does not have a bell and child cannot tell the time), and going private religious school causes child to have existential crisis” - Parent

After exploring available options in mainstream public and private school settings, many families feel they have no option but to enrol their child in home education, or where medically justified, the School of Isolated and Distance Education (SIDE).

Autism Specialist Learning Programs (SLPs) in public primary and secondary schools are a welcome additional option, however these programs are competitive to get into, are mostly located in outer metro areas, and there are not enough places available in the programs to meet demand. Preference is given to autistic students who live in the area and programs can be full before inviting applicants from out of area. There are far more autistic students in WA than places available in SLPs. Eligibility criteria are strict, and the application process is highly involved; this can be a barrier for many students and families.

Some families, especially those supporting a child with Pathological Demand Avoidance (PDA), avoid SLPs due to a philosophical objection to the Contemporary Applied Behaviour Analysis (CABA) approach used in these settings. The critique of ABA is that it trains autistic people to perform a desired behaviour such as compliance in a classroom but ignores autistic people’s needs, which can do harm.

“Most early intervention programs I’ve seen are still using ABA. Even the one at our local public school, the aim should not be assimilation into a mainstream

classroom.   It  should  be  mainstream  classroom,  being  welcoming  and

understanding of all students.” - Parent

The harm in education settings for autistic children and young people manifests in various ways, most commonly social exclusion, sensory overload, and behavioural meltdowns. The consequences of this harm are poor mental health outcomes, autistic burnout, poor educational attainment, school anxiety, chronic absenteeism, school refusal and in some cases, Post Traumatic Stress Disorder (PTSD) or suicide. These harms impact whole families, including parents and siblings, in particular primary caregivers, who are usually women. Many mothers we heard from emphasised the impact of school issues on their ability to work. Constant interruptions from phone calls and meetings with school, dealing with incidents, suspensions or absenteeism means that many women have had to quit work or reduce their hours after using up all their leave entitlements.

In this submission we will provide some examples from other sectors and jurisdictions where the needs of autistic people are planned for and considered using a neuro-affirming lens. Currently the WA education system (comprising Independent private schools, Catholic Education and Public education) still operates largely from a behaviouristic approach (e.g. CABA or Positive Behaviour Support) with a focus on rewarding students’ compliance with school rules and social norms. This approach is in opposition to the neuro-affirming

philosophy that states there is nothing wrong or deviant about autism and neurodiversity, and that educational inclusion means meeting the needs of these students by adapting the environment in ways that respond to their unique neurotypes.

Ultimately, the difficulties in supporting autistic students in WA schools are systemic issues, and not the fault of individual teachers, students, or families.

The prevalence of autism in WA and projected demand for support in schools. Is autism more prevalent across certain demographics than others?

Prevalence of autism may be greater where families have the resources including time, finances, and skills to advocate for a diagnosis. Diagnosis is a privilege that many families can’t access.4

How will an increase in the prevalence of autism affect the availability of support for autistic students in schools?

According to teachers and school leaders interviewed for this submission, teaching in mainstream settings is becoming increasingly complex due to a growing diversity of needs among students: many children are on waitlists for diagnosis; more children are being diagnosed with disabilities (especially autism); while the prevalence of mental health issues and school anxiety is on the rise. The levels of experience and attitudes of teaching staff are highly variable.

“We have been lucky with our kid’s teacher, classroom, EA and one of our special needs EAs. They range in age and experience but are all very receptive to recommendations from our OT and others in our team. Generally what I have seen is that this is not the case…our second EA is a good example of this.” - Parent

This complexity makes it increasingly difficult for teachers to have the time to plan or liaise with all families or to address the individual needs of all students in the classroom at any given time. The allocation of physical resources, teacher time, and funding per student has not increased to match the increasing complexity of student needs – each child needs teaching time.

“A barrier to my child’s education is the lack of resources supporting student centred education and support” - Parent

Consequently, many students with social, emotional, sensory, or learning needs are not getting their additional needs met in mainstream classrooms, leaving families with limited options for their child’s education. Parents of children with additional needs (including Autism, ADHD, PTSD or anxiety) are one of the fastest growing groups within the home education community in Western Australia.5

4 https://themighty.com/topic/chronic-illness/diagnosis-privilege-marginalized-mental health-chronic-disability/ 5 https://hewa.wa.edu.au/home-ed-info/additional-needs/

Significantly more resources will be needed to support the growing population of autistic students.

Segregated special education schools have been gradually reduced while mainstream education is favoured, however the resources allocated to special education have not been carried over into mainstream environments. The misguided belief that inclusive mainstream education would be possible without the additional resources that special education settings provided has created strain in the system and frustration for educators and parents alike. On the other hand, Education Support classrooms have fewer students with more supports, enabling teachers to provide individualised teaching and learning for all students.

“IEP or documentation not shared among all teachers and substitutes” - Parent

Individualised Education Plans (IEPs) are policies that cannot realistically be implemented with current mainstream resources, for example in a class of thirty students where perhaps ten students (one third of the class) have an IEP.

“IEPs are written but not referred to.” – Parent

There is not enough resourcing to provide this level of individualisation to match the increased prevalence of autism and other learning needs. According to one school leader, resources need to be increased to a similar level as seen in education support ratios. The maximum number of students in classrooms needs to be reduced to increase the time available for teachers to support the individual learning needs of all students.

“My son doesn’t feel comfortable communicating when he needs help. He needs his teachers to understand this, and check in with him often” - Parent

More teaching  staff and education  assistants are needed  in every school to  tailor

individualised learning for students and support classroom teachers through assessment and IEP implementation, small group tuition, 1:1 support and other supports to realise inclusive education; this could be as simple as supplying an additional non-classroom teacher for all schools over a certain size, or for every 250 students (for example).

Small-grouptuition–educatorsworkingwithjustafewstudentsatatimeinshort,

highly focused sessions – is among the most effective learning interventions available.Deliveredwell,itcan addanextrafourmonthsoflearningonaverage overayear,helpingmanystrugglingstudentscatch-up.6

Social and academic outcomes for autistic students may worsen with high prevalence

The 2018 ABS survey of Disability, Ageing and Carers found that 92.3% of young people (101,900) aged 5 to 20 years on the autism spectrum attending school had some form of 7 educational restriction (92.3%), including a small number who were unable to attend school because of their disability. Two in five (40.8%) of the children attended a special class in a mainstream school or a special school.7

6 Sonnemann, J., and Hunter, J. (2023).Tackling under-achievement: Why Australia should embed high-quality small-group tuition in schools. Grattan Institute.

Australian Bureau of Statistics. (2018). Disability, Ageing and Carers, Australia: Summary of

Findings. ABS. https://www.abs.gov.au/statistics/health/disability/disability-ageing-and carers-australia-summary-findings/latest-release

Of the 106,600 young people (aged 5 to 20 years) with autism who were attending school or another educational institution, 77.7% reported experiencing difficulty at their place of learning. Of those experiencing difficulties, the main problems encountered were fitting in socially (59.8%), learning difficulties (55.3%) and communication difficulties (51.5%).8

Researchers in inclusive education believe that the project of inclusive education is yet to be realised, arguing that ‘inclusion demands that we change the existing educational environment in order to respond to the diverse needs of all learners’ and this demand is not yet being met (Pellicano, Bolte & Stahmer, 2018: 386).9 Most countries are failing to include autistic children and young people. These students are vulnerable to poor psychosocial

outcomes and  at much greater  risk  of  social  exclusion,  bullying and harassment,

victimisation, suspension and expulsion from school.10,11

Poor school attendance is associated with poorer life outcomes, greater risk of suicide and major mental health conditions.12 In a recent USA study of a representative sample of children aged 5–17 years, it was found that children with ADHD, Autism or intellectual disability were more likely to have had chronic school absenteeism than other students.13

These findings suggest that an increase in the prevalence of autism in WA may lead to an increase in school refusal, chronic absenteeism, and mental health crises among these young people, especially if the higher prevalence is not met with more resources to support autistic students in mainstream classrooms.

The  risk  of developing depression  also increases  in  early adolescence, with young

adolescents on the autism spectrum at greater risk than their neurotypical peers.14

Schoolconsultationiscrucial…Theimportantstepsincludecollaborationinagenda

setting;providingaclearrationalewhenintroducingaspecificskill;makinguseof educational handouts; regularly checking the client’s understanding; facilitating collaborative problem-solving discussions; modelling skills; engaging clients in skills rehearsal and providing positive and constructive feedback. Parenting support and behavioural management principles need to be carefully planned… school-relatedissuessuchasbullyingneedtobeaddressedsimultaneously.15

Australian Bureau of Statistics. (2018). Disability, Ageing and Carers, Australia: Summary of

Findings. ABS. https://www.abs.gov.au/statistics/health/disability/disability-ageing-and carers-australia-summary-findings/latest-release 9 The current illusion of educational inclusion 10 The current illusion of educational inclusion 11 How pupils on the autism spectrum make sense of themselves in the context of their experiences in a mainstream school setting: A qualitative metasynthesis 12 https://www.cyda.org.au/images/pdf/enabling_and_protecting.pdf 13 Black LI, Zablotsky B. (2018) Chronic school absenteeism among children with selected

developmental disabilities: National Health Interview Survey, 2014–2016. National Health Statistics

Reports; no 118. Hyattsville, MD: National Center for Health Statistics. 14 Hossain et al., 2020; Hudson et al., 2019; Mayes et al., 2011; cited in Schochet, Saggers & Carrington et al 2022 15 Prabhuswamy, M. (2018) To go or not to go: school refusal and its clinical correlates. Journal of Paediatrics and Child Health 54 (2018), pp 1117-1120.

Current support available for autistic students in WA schools: Current supports for autistic students in WA schools include:

Education Assistants (EAs) providing 1:1 support in class and during breaks where needed. This type of support is most effective where the relationship is consistent (i.e. the same EA stays with the student through the day/week/years, not subject-based EAs who are different in each class) and where staff are highly trained and experienced with contemporary disability inclusion practice.
Individualised Education Plans (IEPs) to adapt teaching and learning and set academic or social goals. These are most effective when written in collaboration with parents and other supports. Teachers need to be adequately resourced with the time to implement IEPs for use in daily teaching, not filed away and reviewed once a year.
Some schools provide ‘sensory diet’ breaks such as quiet rooms, heavy work, or fidget toys. These strategies are often used in response to dysregulation or escalation of behaviours, but they are designed as tools for prevention of dysregulation and minimization of stress and harm. It would be ideal if school environments were set up to be nurturing spaces that naturally meet students’ sensory needs for regulation.
Some schools provide a Learning Support Coordinator. This person can be an important liaison between school leaders, student services, classroom teachers, EAs and parents. In some cases, learning support and inclusion is seen as the role of this one person, rather than the responsibility of the whole school: all staff and students.
Specialist Learning Programs (SLPs) in some public primary and secondary schools. While they do make a difference for students, the above supports are all vastly under resourced -and the difference they make is ineffective to achieving student wellbeing and academic outcomes. In other words, the school environment is unsuitable for many autistic children and young people, and the current supports provide short-term relief or assistance to fit a ‘square peg in a round hole’.16

Western Australia is experiencing a crisis of education where the system is no longer adequate for meeting the needs of autistic students in mainstream settings.

Kiind invited parents of autistic students to answer a poll asking: ‘what are the biggest barriers to your autistic child getting their needs met in school or education?’ The poll received 1,129 votes. The top 5 responses were:

unsuitable learning environment, e.g. sensory, classroom design 15% (160 votes)
mental health issues e.g. anxiety 13% (155 votes)
staff attitudes or lack of understanding 12% (144 votes)
inadequate support – e.g. 1:1 and small group work, EA time allocation 12% (143 votes)
behaviour management approach of school e.g. suspension 10% (105 votes) According to Children and Young People with Disability Australia (CYDA), a transformation in education is needed to ensure Australia complies with the United Nations Convention on the Rights of Persons with Disabilities (CPRD): students with disability in Australia experience considerably poorer educational outcomes than non-disabled students; around 30 per cent

16 Square Peg Round Whole

of people with disability aged 20 or over have completed Year 12-level schooling, compared with 62 per cent of people without a disability.17

Suspensions andexpulsions are familiarpracticesintheschoolexperiences of students with disability, which shows the lack of understanding and support available. Almost 15 per cent of students with disability surveyed by CYDA in

AugustandSeptember2019hadbeensuspendedintheprevious12months;1.8

percentwereexpelled.18

A growing proportion of WA families raising neurodivergent children find that the current offering of mainstream and special education options does not meet their needs. Many families are ‘choosing’ home education where the school is not able to meet their child’s specific learning or psychosocial support needs.

“I find both teachers and EAs (even special needs EAs) lack understanding of neuro diverse students” – Parent

The decision to home school has large impacts on family life and finances, including parental employment and stress. The reasons parents choose to home educate are as varied as the families themselves, however the most common reason for choosing home education for a child with additional needs is that it enables parents to meet not only the intellectual and educational needs of their child, but also the emotional, physical and developmental needs in a supportive, loving environment – an environment that the child is already familiar with, and one that the child already feels safe and secure in which the parent knows how to navigate confidently.19

Parents of children with disabilities including autistic children are less likely to be in full-time work than other parents, and primary carers are more likely to be women.20 Those parents who do work are more often on low incomes or in casual employment than parents of neurotypical children.21 The lack of appropriate educational options for autistic students in WA schools has a compounding effect of disadvantage on the whole family, and this disproportionately affects women.

Adolescents on the spectrum are more likely to feel lonely due to disengaging [and/orrejection]frompeersasaresultofcommunicationandsocialinteraction difficultiesthatintensifywiththeincreasingsocialdemandsofearlyadolescence.22

Rather than focusing on treatment of the individual, schools and other social institutions need to focus on fostering inclusion and acceptance so that rejection does not manifest in

17 Driving change: A roadmap for achieving inclusive education in Australia ACIE 2021 18 Children and Young People with Disability Australia (2019) Time for Change: The state of play for inclusion of students with disability, Results from the 2019 CYDA National Education Survey 19 https://hewa.wa.edu.au/home-ed-info/additional-needs/ 20 Clarke, Dr. H. (2006) Preventing Social Exclusion of Disabled Children and Their Families: Literature review paper produced for the National Evaluation of the Children’s Fund. Institute of Applied Social Studies, University of Birmingham. 21 Clarke, Dr. H. (2006) Preventing Social Exclusion of Disabled Children and Their Families: Literature review paper produced for the National Evaluation of the Children’s Fund. Institute of Applied Social Studies, University of Birmingham. 22 Humphrey & Symes, 2010; White & Roberson-Nay, 2009

the first place. Further, schools need to understand the impact of such difficulties on the whole system of formal and informal supports surrounding the child.

Tacklingmentalhealthdifficultiesinadolescentsontheautismspectrumrequires

acomprehensivepreventionapproach23

155 of 1,129 parents (13%) indicated that mental health issues were a major barrier to their child’s education. A further 49 (5%) of respondents added an additional barrier PTSD from previous school experiences hindering progress. School anxiety and avoidance creates stress for the whole family and can impact on the primary caregiver’s ability to maintain employment.

Parental burnout correlates with autistic burnout – if a child is depressed or anxious, this will have a direct impact on parent mental health, particularly where the child may have chronic absenteeism or be experiencing social, behavioural or academic difficulties that require regular contact with school.24

“We end up losing our careers, developing anxiety and/or depression, affects mental health of child and mum. Financial impact on family. Affects relationship between parents” – Parent

Many carers (usually mothers) expressed that they could not continue working during their child’s school difficulties, due to regular interruptions to their workday, using up all their leave entitlements, and finding they could not fulfill responsibilities such as supervising team members when effectively ‘on call’ with the school on a daily basis. In these cases, parents either negotiated a reduction in work hours, took extended unpaid leave, or resigned from their jobs to care for their autistic child when not attending school.

“I withdrew mine from school completely, due to the trauma her short experience caused her. And me, for that matter. Mental health is more important than bums on seats” – Parent

What are the challenges and successes for implementing evidence-based practices across the school system?

As mentioned above, the dominant evidence-based practice used across the school system is Contemporary ABA, based upon behaviourism - this is out of favour with many autistic people from the neuro-affirming community, who vocally object to ABA practices.

“I’m an early childhood teacher myself. [Its] very unlikely I’ll return to my classroom when my parental leave concludes at the end of this year…but I have been at the coal face, so to speak, and know firsthand the limited support available to teachers. In addition to that, the education department still has a strong ABA focus, which is outdated practice.” – Parent/educator

23 Shochet, I.M., Saggers, B.R., Carrington, S.B. et al. 2022 A School-Based Approach to Building

Resilience and Mental Health Among Adolescents on the Autism Spectrum: A Longitudinal Mixed

Methods Study. School Mental Health 14, 753–775 (2022). https://doi.org/10.1007/s12310-022-09501-w 24 The Well-being and Support Needs of Australian Caregivers of Neurodiverse Children Journal of Autism and Developmental Disorders February 2023. https://doi.org/10.1007/s10803-023-05910-1

Classroom teachers may lack the time or training for implementing new or emerging evidence-based practices, or to keep abreast of the current research and lived experience perspectives.

“Graduates start their careers in schools with very little professional knowledge of ASD and have steep learning curves. Often several students in every classroom have a diagnosis or other additional needs, such as anxiety or learning difficulties. One improvement could be to increase teacher training in autism in universities” – Primary School Principal.

We know from the research evidence that effective, neuro-affirming behaviour supports:

Prioritise relationships – teachers know and understand their students
Equip teachers to teach learning behaviours and use strategies and routines in their classroom
Use targeted approaches to meet the individual needs of students; and
Are coherent and school-wide.25 Unfortunately, the current education system is not adequately resourced to achieve the school-wide culture change required to effectively implement the evidence-based, relational approach to behaviour support for autistic students.

“We need mainstream schools hiring teachers that understand ASD and diverse learning (bonus if they have lived experience) and meet the sensory, emotional and social needs of students.” - Parent

One school leader explained that professional learning is often not possible due to other demands on teacher time. However, respondents also highlighted the lack of training in autism and neurodiversity among the teaching profession, suggesting that a more uniform

approach to professional development would have  positive implications  for autism

awareness.

“I’m quite passionate about adjusting the TRBWA professional learning hours requirement to stipulate a certain percentage should be allocated to high quality, endorsed neuro-affirming practice…from somewhere like Clinikids perhaps.” –

Parent/educator

All public WA primary and secondary schools can seek support from the School of Special Educational Needs-Disability (SSEN-D). SSEN-D consulting teachers provide support to classroom teachers struggling to meet individual student needs. SSEN-D consultants are skilled in current evidence-based practices and can provide individualised support and ideas for teachers to implement with specific students. Schools can access SSEN-D consulting teacher expertise through referrals. This system has limitations as SSEN-D is not available to

25 Moore, D., Behnham-Clark, S., Kenchington, R., Boyle, C., Ford, T., Hayes, R., & Rogers, M. (2019). Improving Behaviour in Schools: Evidence Review. London: Education Endowment Foundation. Retrieved from: https://educationendowmentfoundation.org.uk/education-evidence/evidence reviews/behaviour https://evidenceforlearning.org.au/education-evidence/guidance-reports/effective behaviour-supports-in-schools

independent private schools or in the Catholic Education system - there are equivalent services however these may be under-resourced compared with the SSEN-D program.

“SSEND difficult to access” – Parent

A critique of SSEN-D is that does not work directly with families or involve parents in developing strategies for implementation with students; consulting teachers are a resource for the school and classroom teacher only. There is limited information available regarding the evidence-base that SSEN-D consultants work from – this may be at odds with the approach of therapy providers, parents and other supports surrounding students.

What is the interaction between school supports and other service areas that autistic students are accessing?

The behavioural and learning support provided by SSEN-D - while teaching staff may find it helpful - is not holistic or coordinated with other supports. Often parents are unaware of the type and nature of interventions suggested by SSEN-D as there is no direct communication between families and consulting teachers.

“[There is] poor coordination of supports between home, school and therapists.”

Parent

There is a lot of variability in schools’ approaches to working with other supports around students. Some provide meeting spaces for students to engage with allied health services such as private speech therapists or Occupational therapists, though this is not always possible depending on the school site and size (where growing populations often there is not a physical space for this to occur).

“No free spaces on campus for on-site therapy” - Parent

Some educators work in partnership with families in developing IEPs or problem-solving strategies in the classroom, however this is often personality-driven – parents speak of individual teachers who can be very collaborative or effective in their approach, but this is seldom reflective of a wider school culture and more often dependent on the individual teacher’s own values and motivators.

Weneedtomovetowardsamoreeffectivecollaborativeholisticfamilyapproach

wheretheneedsofeveryonearemet26

Engagement between parents and educators involves an imbalance of power and relies on the parent’s confidence and skills in collaboration and advocacy.

“One roadblock to getting my child’s needs met in school is the lack of support for parents trying to navigate and understand the Education System, to speak ‘the language of schools’ so can get things sorted for child” – Parent

26 https://www.autisticrealms.com/post/education-crisis-neurodiversity-affirming-teacher-training needed

Parents need to be supported to understand the school context and resources available for their child. One parent noted that they had never heard of an IEP, but the school principal blamed them for not initiating an IEP meeting with their child’s teacher. Some parents spoke of being adversaries with the school or being labelled the ‘difficult parent’ – a label which became a further barrier to getting their child’s needs met.

“High school has been very difficult. Getting reduced contact hours has been good but required wrangling with management and getting letters of support from specialists (who are all booked out for months)” – Parent

Where parents speak most positively about school it is usually in the context of an educator or leader influencing positive school culture, such as a Principal driving an inclusive focus, or the collaborative approach of certain teachers working in partnership with parents.

Thebiggestdifferencebetweenstudentshavingstrongeducationalattainment

andoutcomesandnot,isthecultureoftheschool…thisculturecomesdirectly from the school principal and other leaders making a priority of inclusive education.27

What is the interaction between State and Commonwealth funded services?

There are major issues  in the degree  of  responsibility  shifting between State and

Commonwealth funded services regarding provision of disability supports. The NDIS does not fund supports for its participants in accessing education, although arguably school inclusion could fit under the NDIS supports for children, in the same way that volunteering and workplace supports are funded for adult participants.

One parent spoke of their child’s exclusion from school camp as their support needs were a barrier to participation, but the NDIS refused to fund a support person as it was deemed the education system’s responsibility.

“What it comes down to is that the education system is exclusionary to the point where many NDIS participants are simply unable to access it without additional supports” – Parent

If more resources were directed to inclusive education, then there would be less demand for additional supports from the NDIS to ‘work around’ a system that is failing these students.

Strategies in other jurisdictions that support school systems to respond to the needs of autistic students, and the applicability of those strategies to WA.

There is a growing movement in Australia and globally towards neuro-affirming practices – this rights-based movement recognises and affirms neurodevelopmental differences as natural variance in human development and seeks to respect neurodevelopmental differences rather than attempt to ‘stamp out’ autistic traits or behaviours or teach autistic people to comply with neurotypical norms (Doherty, McCowan & Shaw 2023). Inclusive education recognises the right of every child and youngperson– without exception – to be welcomed as a valued learner and genuinely

27 Senate Committee on Education and Employment 2016

included in general education. It involves ensuring that learning environments and teaching approaches support full participation of all children and young people on an equal basis regardless of individual attributesorcharacteristics.28

In consultations for this submission, several parents expressed a desire for neuro-affirming options in education in WA. Many parents follow a neuro-affirming, rights-based philosophy in their parenting and other interventions with their neurodiverse children.

“I run my own early intervention classes now for families with a child presenting with developmental delays, and across the board they have all said it’s so difficult to find professionals who understand autism, and not just a stereotype…and that’s within the medical profession. Luckily there are some of us who are trying to share current research and neuro affirming practice, but we seem to be few and far between.” – Parent.

Models in other jurisdictions – interstate and international

Parents are seeking educational options that complement the neuro-affirming approach. For example, Collaborative Proactive Solutions (Dr Ross Greene) is an evidence-based model from the USA gaining popularity in Australia but with limited implementation and very little take up in the education system. In a recent poll, 1,129 parents were asked to share the biggest barriers to their child’s education. Respondents had the choice of adding their own poll option. One respondent stated ‘Can’t find a school who is using Collaborative Proactive Solutions’ – after this option was added, a further 37 parents selected this, representing 4% of respondents (not controlling for those who had already responded before this poll option was available). At present there do not seem to be any schools in WA offering Collaborative Proactive Solutions. This approach is particularly popular among the community of parents supporting children with PDA, for whom ABA is considered an inappropriate intervention that can exacerbate problems.

“The answer is not to standardise education, but to personalise and customise it to the needs of each child and community. There is no alternative. There never was.” – Sir Ken Robinson, former International Adviser on Education.29

The South Australian (SA) government has rolled out more than 400 specialist autism inclusion teachers across the education system, responding to the increasing prevalence of autism. The newly created roles will work directly with teaching staff to increase their capacity to support students with autism. SA Premier Peter Malinauskas states “the challenge here is to bring 18,000 teachers up to speed with the most modern practices around assisting a child who is autistic” in the context in which “in every classroom there is at least one child who is autistic — at least one. Some classrooms have two or three children that are autistic”.30

When asked for examples of effective autism education in other jurisdictions, one parent mentioned the Boston Higashi school. While embracing the goal of educating the ‘whole

29 HTTPS://IDEACADEMY.COM.AU/PROGRAMS/

30 https://www.abc.net.au/news/2023-02-01/autism-inclusion-teachers-begin-student-support-roles in-sa/101917990

child’, Boston Higashi offers several programs to support a range of educational needs and strengths.

“Within every living child exists the most precious bud of self-identity. To search this out and foster it with loving care, that is the essence of education for the child with autism.” - Dr. Kiyo Kitahara, Boston Hirigashi School31

One parent cited Havenport MSL College - a non-government co-educational school in Cockburn - as offering a progressive approach to inclusive education. According to the school website, Havenport MSL College “delivers evidenced-based, multi-sensory education and is a pioneering voice in the world of education, embracing new ideas based on sound educational principles”.32

Another parent would like to see the Big Picture Australia (BPA) program embraced and available for autistic students. This is student-led, interest-based learning with relationships at the core:

“One of my children attends a BPA school. Students choose their own area of interest to learn so they have more autonomy, they call the teachers by their first names which removes perceived authority and creates a more equal relationship, they have the same teacher and EA for three years which keeps relationships consistent and allows the knowledge the teacher has gained about the students to continue rather than starting again each year, they have one teacher overall, not a different teacher for every subject, which eliminates transitioning to six different subjects with different teachers per day”– Parent

Models in other sectors – health

Autistic SPACE

Inclusion means addressing the needs of all students, especially those most needing adjustment. Autistic people experience the world differently than neurotypical people, and

many environments  in  healthcare, community and education are challenging and

overwhelming for their sensory systems. Many ‘challenging behaviours’ seen in schools are the result of sensory overstimulation. Too often, these behaviours are met with harsh discipline including suspensions. There is a growing understanding and evidence-base for the need to adapt environments to better suit divergent neurotypes and improve access for all.

“The teacher found that the strategies for autistic kids benefited the other kids in the classroom” – Parent

31 https://www.bostonhigashi.org/

32 http://www.havenportmsl.org.au/about-us/why-choose-us/

Autistic SPACE is an innovative new framework for meeting the needs of autistic people in healthcare settings, designed to facilitate equitable clinical services.33 This framework appears to have strong applicability to education settings. Using the acronym SPACE, the framework encompasses five core autistic needs:

Sensory Needs (sight, sound, touch, taste, temperature, smell, proprioception)
Predictability
Acceptance
Communication, and
Empathy. These needs are addressed across three domains:
Physical Space
Processing Space, and
Emotional Space. “What we need educators to know: it can take almost a whole school year for autistic students to feel comfortable and supported asking teachers for help. Then there is the experience of being ‘back to square one’ with new staff the following year” – Parent

By attending to all five autistic students’ core needs across the domains of physical, processing and emotional space, we could design educational spaces that are neuro affirming and can meet the core needs of all students.

Here are some ideas for how the Autistic SPACE framework may apply to solutions in education:

Sensory Needs

Autistic people experience the world and sensory input differently – sensory stressors are cumulative – children’s ‘buckets’ become increasingly full as they travel through each day. Environmental sources of stress may be imperceptible to non-autistic people, leading educators to ‘misfocus on challenging behaviour’.34

“Team teaching. Home-like environment, minimal sensory stimulation. Focus on relationships – with peers and teachers.” – Parent

“they wear their own clothing not a uniform which allows for sensory sensitivities, they have small class sizes of 16 kids per class which reduces noise, overwhelm and social anxiety.” – Parent

“Adapting the environment to accommodate sensory needs” -Parent

33 Doherty M, McCowan S, Shaw SCK. Autistic SPACE: a novel framework for meeting the needs of autistic people in healthcare settings. Br J Hosp Med. 2023. https://doi.org/10.12968/ hmed.2023.0006

Doherty M, McCowan S, Shaw SCK. Autistic SPACE: a novel framework for meeting the needs of autistic people in healthcare settings. Br J Hosp Med. 2023. https://doi.org/10.12968/ hmed.2023.0006

Predictability

Autistic people need predictability and may experience extreme anxiety with unexpected change.35

“Minimise change and transitions. Homeroom-based learning where subject teachers come and go, students stay in the same room all day. Or spend a whole day on one subject – delve deep into topics rather than having to switch topics 5 times a day” - Parent

“A better solution would be to maintain consistency in relationships over time. Where possible a continuity of teaching staff across different years, preferably through entire high school journey to help students understand and adjust to

teacher expectations, rather than changing  staff – new  rules, personalities,

teaching styles, attitudes, and expectations to learn each year.” – Parent

Acceptance

Beyond simple awareness, there is a pressing need for autism acceptance.

“I truly believe that for teachers, a percentage of their required professional learning to keep their teacher registration should be around neuro-affirming practice.” – Parent

“Attitude, willingness and flexibility of principals and educators towards the child and the modifications required is a huge one” – Parent

A neurodiversity-affirmative approach recognises that neurodevelopmental differences are part of the natural range of human development and acknowledges that attempts to make autistic people appear non-autistic can be deeply harmful.36

“The  principal has strong focus on  inclusion, acceptance and tolerance of

difference, he has built strong school culture of this” - Parent

Communication

Autistic people communicate differently. Many autistic people use fluent speech but may experience challenges with verbal communication at times of stress or sensory overload.37

“Teaching staff can help students scaffold communication skills such as asking for help. This can take time.” - Parent

“Some educators think that once a student develops skills or confidence communicating with one teacher, that the skill is transferable to other relationships. It is not” – Parent

35 Royal College of Psychiatrists, 2020 36 Doherty M, McCowan S, Shaw SCK. Autistic SPACE: a novel framework for meeting the needs of autistic people in healthcare settings. Br J Hosp Med. 2023. https://doi.org/10.12968/ hmed.2023.0006 37 Cummins et al, 2020; Haydon et al, 2021, cited in Doherty M, McCowan S, Shaw SCK. Autistic SPACE: a novel framework for meeting the needs of autistic people in healthcare settings. Br J Hosp Med.

https://doi.org/10.12968/ hmed.2023.0006 16

“Lots of contact with parents, emails from teachers – asking ‘what can we do to support him?’ - all the teachers are really sensitive to his needs” - Parent

Empathy

A bi-directional, mutual misunderstanding occurs between autistic and non-autistic people, termed ‘the double empathy problem’.38

“Teachers often use practices like timers, routine, exclusion, segregation on autistic students, which don’t help. Less time put into connection or relationship building. Teachers are incredibly stressed under high workloads and don’t often want to think how to set up or teach in alternative ways” - Parent

Non-autistic people may struggle to empathise with autistic students, particularly where communication training is generally conducted from a neuro-normative, non-autistic perspective, in which the needs of autistic people are not considered.39

“The types of education supports that have made a positive difference include when there is a safe person or safe space on campus” – Parent

“More education of teachers, management and school community about autism, and autism in girls” – Parent

Recommendations

Implement the Autistic SPACE Framework in all WA schools See discussion above.

“We need smaller local schools, less physical size, less children, less contact days, less subjects, less homework - reduce the demand and give the child time to process, time to recover, time to make friends etc because already working doubly hard at school and then often have therapy on top of that” – Parent

More humanism, less behaviourism Many parents and some professionals are critical of the behaviouristic approaches to intervention and education practiced in many schools today. The growing neuro-affirming movement argues that autistic people are not disordered but simply have brains and learning styles that are divergent from the ‘norm’.

The social model of disability postulates that it is not the individual who needs to adapt to the system, but that mainstream systems are discriminatory, limiting, and stigmatising of divergence - the education system needs to change to meet a wider range of student needs.

38 Milton, 2012 39 Bradshaw et al, 2021, cited in Doherty M, McCowan S, Shaw SCK. Autistic SPACE: a novel framework for meeting the needs of autistic people in healthcare settings. Br J Hosp Med. 2023. https://doi.org/10.12968/ hmed.2023.0006

“When the education system shifts the narrative from ‘the child is choosing to misbehave’ to ‘the child is struggling and needs an adult’s help’, ALL children will benefit” – Mona Delahooke40

Many parents have moved away from the behaviourist approach to raising children, instead focusing on relational, rights-based parenting. These respectful, rights-based approaches to parenting are at odds with an education model that is still reliant on control or authority with a focus on compliance through use of extrinsic motivators. Humanistic learning based on the principles of humanism takes a child rights-based approach.41 This centres on the learner as an individual and considers that learning is not just about the intellect, but also about educating the ‘whole person’ taking a person’s interests, goals, and enthusiasm into account, so that full potential can be achieved.

This approach to learning is student-centred rather than teacher-centred, with learners encouraged to take responsibility for their own learning and being intrinsically motivated.42 The primary goal of a humanistic education is human well-being, including the primacy of human values, the development of human potential, and the acknowledgment of human dignity. Some independent school systems, notably Montessori and Steiner education focus on the student-led approach. The Big Picture Australia offers another example of humanistic education.

Intrinsic motivation can be fostered through introducing more flexibility to learning topics or curriculum, enabling students to complete project-based assessment and class work that allows students to follow their own goals and interests. Several new models for education are beginning to explore more design-driven and project-based approaches to education, that set students up for solving ‘real world’ problems in situations that feel more like a workplace.

Schools can embrace the potential of the Autistic ‘monotropic mind’ by adapting teaching strategies and the curriculum to meet their needs, such as project-based assessment and learning.43 Some examples exist in independent private schools in WA (see Perth Waldorf School and Bold Park) where students work on a year-long project according to their own interests, as an alternative to ATAR examinations.

Flexible enrolment options, such as part-time school enrolment and hybrid home-based learning, should be available to all students to cater for individual learning needs, strengths, and preferences.

Build a culture of safety and inclusion in all WA schools The WA education system needs to get serious about psychological safety for all students. Any form of bullying or harassment between students - particularly where targeting vulnerable children and young people – is unacceptable. In the same way we have anti harassment policies in the workplace to keep employees safe, students need to be protected from harassment from peers, especially as school is compulsory and children don’t have the choice to leave a toxic environment. Students with autism experience high rates of distress and harm from the trauma of bullying and exclusion.

40 Square Peg Round Whole

41 Gandhi & Mukherji, 2022: Learning Theories 42 Gandhi & Mukherji, 2022: Learning Theories 43 https://www.autisticrealms.com/post/education-crisis-neurodiversity-affirming-teacher-training needed

Parents often report that schools are hesitant to admit they have bullying problems or to adequately address the issue. A recent study by UNSW has identified that students with autism are the group most likely to be bullied at school, and that schools need to do much more to prevent it44. The incidence of bullying towards autistic students increases in high school, where incidence decreases for neurotypical students.45 Many parents end up having to withdraw their child or start a new school because of a school’s inadequate response to persistent bullying or social exclusion. There is sometimes an underlying message of victim blaming in schools where difference is seen as a negative attribute.

“Ultimately my son has now moved schools which has caused a lot of upset and trauma in my house. He feels like he is being punished for something he hasn’t done.” - Parent

School can be traumatising for students with autism. We need a school-wide culture of

compassion embedded  in neurodiversity-affirming  principles to improve  safety and

inclusion for autistic students.46

Creating an anti-bullying culture across WA schools could be achieved through funding for all schools to compulsorily run evidence-based anti-bullying interventions.47

Neurodiversity affirming practices and programs are an important tool for schools to improve safety and inclusion of autistic students.

Beyond WA, there is scope for a coordinated framework for inclusive education in all Australian education settings. The following research-based recommendations developed by Children and Young People with Disability Australia (CYDA) are key to the transformation towards genuine inclusive education:

Implement a national action plan for inclusive education to reduce parallel systems
Ensure the full recognition of human rights, disability rights and child rights
Foster a culture of inclusion – addressing ableism within and beyond education
Introduce compulsory, comprehensive and ongoing teacher education for inclusion
Ensure flexible and responsive curriculum and assessment approaches
Incorporate the voices of students with disability in all decisions that affect them
Prioritise disability equity training for all educators including awareness-raising and educational practice strategies.48

44 https://www.news.com.au/lifestyle/health/mental-health/one-group-most-likely-to-be-bullied-at school/news-story/c462488ee73629945386cae67f9a3557 45 https://www.news.com.au/lifestyle/health/mental-health/one-group-most-likely-to-be-bullied-at school/news-story/c462488ee73629945386cae67f9a3557 46 https://www.autisticrealms.com/post/education-crisis-neurodiversity-affirming-teacher-training needed 47 https://education.nsw.gov.au/content/dam/main-education/en/home/student wellbeing/attendance-matters—resources-for-schools/anti_bullying_in_schools_what_works_AA.pdf 48 Cologon, K. (2019) Towards inclusive education: A necessary process of transformation. Report written by Dr Kathy Cologon, Macquarie University for Children and Young People with Disability Australia (CYDA)

Provide additional resourcing for truly inclusive mainstream education What this resourcing could look like:

More educators available for flexible curriculum delivery – additional time and expertise for planning adjustments, measuring student capabilities and areas for development,

adapting work, providing small group tuition, classroom observations and

accommodations, and teacher mentoring. The South Australian system provides a model for this additional educator role.

“This means the curriculum needs to be customized to be relevant, engage in their deep interests, cut back on content and allow them to demonstrate academic understanding in supported multimedia ways.” - Parent

•  More Education Assistants (EAs) – providing small group and  1:1 tuition, social skills

groups, communication supports, student coaching and mentoring, and sensory breaks.

Reducing class sizes to allow teachers to provide individual attention to all students at their level, while reducing noise and other sensory stimuli to help autistic students cope in the environment.
Providing more time - additional DOTT (Duties Other Than Teaching) for classroom teachers to enable more collaboration and communication between school, parents and other supports – a holistic approach to student learning and wellbeing. More time also means that extra processing time is planned to allow autistic students to participate fully and meaningfully – such as the additional time it takes to master a new skill, process information, develop relationships, or complete work.

Acknowledgement of Lived Experience

Kiind would like to acknowledge the individual and collective expertise of families raising children and young people, with disability, and the generosity of parents, school leaders, and teachers in sharing their perspectives to inform this submission. We recognise the vital contribution of parents raising children with disability, and value the courage of those who shared their perspectives for the purpose of improving the education system for the benefit of all children and young people.