Submission 25 — Name Withheld — Inquiry into support for autistic children and young people in schools

From:

Sent: Saturday, 8 July 2023 5:17 PM

To: Committee, Education & Health Standing laehsc@parliament.wa.gov.au

Subject: Inquiry into Support for Autistic Children and Young People in WA Schools - submission from | |

BE 8/7/2023

Importance: High

Attention: Education and Health Standing Committee

Inquiry into support for autistic children and young people in schools

Thank you for the opportunity to share our experience and understanding of support for autistic children and young adults in WA schools.

I appreciate that the WA State Government is conducting an inquiry into this critical issue, which is long overdue from our family’s perspective.

We welcome the Committee’s recommendations on the changes that can be made to the WA education system to ensure that EVERY autistic student has the opportunity to receive an inclusive or appropriately supported education in the future.

1. The prevalence of autism in WA and projected demand for support in schools. e What factors are affecting the prevalence of autism in WA? Over the past two to three decades the prevalence of autism has increased markedly. This is in part due to increased awareness and understanding of the widely variable presentations of autism in children by educators and health professionals (ie not all autistic children are boys, not all autistic children avoid eye contact, not all autistic children have verbal delays or are non-verbal, not all autistic have “stimming” behaviours like rocking); greater willingness by educator and health professionals including GP’s to refer on for assessment; improved public knowledge, understanding and acceptance of autism; improved record keeping; increased requirements by the WA Department of Education/ AISWA/CEOWA/Centrelink/DSC and now NDIS/ Medicare and other government agencies to have a documented diagnosis of autism in order to access services, supports and funding; and parents increasing willingness to access assessment and diagnosis services. The actual prevalence of autism itself may not have increased, but rather all of these associated factors may have resulted in an increase in assessment and diagnosis. Regardless of the cause, there are increasing numbers of children being diagnosed as autistic each year/ decade.

e Is autism more prevalent across certain demographics than others? Historically it has been thought that autism occurs three to four times as frequently in males than in females. However, it is now understood that girls are grossly underrepresented in documented autism diagnostic rates, due to their presentation being very different from male

presentation. They have subsequently been misdiagnosed or missed diagnosis.

Personally, I’m not aware of the current variability in autism prevalence by race, religion, socioeconomic status, educational level achieved etc.

In terms of age group distribution, the rate of autism in children and young adults would appear to be significantly higher than in the adult population. However, this is very likely to be because adults have missed out on diagnosis prior to the 1990s/early 2000s as public awareness and practitioner training/skills/experience/expertise was lacking. So while documented diagnostic rates in adults may appear lower, it is highly likely that there are many thousands of adult Australians who are either undiagnosed or misdiagnosed with a psychiatric or other condition eg personality disorder, bipolar and/or that accurate diagnostic records have not been maintained:

1. “The current overrepresentation (83%)2 of children and young people aged under 25 years in prevalence data may be explained by historically inconsistent diagnostic protocols, the lack of research or inadequate records to track the disorder.3” 3 Australian Bureau of Statistics 2018, “Autism in Australia”, Disability, Ageing and Carers, Australia: Summary of Findings, Canberra. Cited in https://www.ccyp.wa.gov.au/media/4348/report-speaking-out about-autism-the-views-of-children-and-young-people-with-autism-july-2020.pdf  How will an increase in the prevalence of autism affect the availability of support for autistic students in schools?

Clearly, the very significant increase in the number of autistic students in DoE, AISWA and CEOWA schools in the past couple of decades has dramatically increased the need for support in schools. The little that was available (which was entirely inadequate before) is now grossly inadequate and has been for many years, despite some limited developments such as the autism specific units in some DoE schools, supporting a very small percentage of the entire autistic student population due to limited places, staff and strict entry criteria.

(As an example, after years of extremely inadequate support and poor outcomes at local DoE school, our family was forced to self-fund an Education Assistant at two private independent schools in order for enrolment to even be considered for approval. This conditional enrolment is therefore biased towards those able to both find and fund the support required. It should be provided by ALL schools to ALL autistic children as a human right, facilitating their ability to participate and receive an education).

Our own child was severely under-supported by multiple DoE and AISWA schools. This has resulted in long-term trauma, very significant mental health problems, including self-harm and suicidality, ongoing need for frequent psychiatric and psychological support, daily medication, dysfunction in daily life, damaged family relationships, major financial impact on family, significant impact on sibling mental health, parental stress, and a raft of other deleterious outcomes. In short, they have ruined my child’s life, my child’s sibling’s life, my husband’s life and my life.

SO much more is necessary than what is currently available, and this will continue to increase sharply in the coming years.

It is difficult to put into words the extent of this problem, and the severe trauma/damage it has caused many hundreds, if not thousands, of children/families across Western Australia, including my own.

2. Current support available for autistic students in WA schools, including consideration of:

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

2

Ideally the NDIS, CAMHS and DoE/ AISWA/CEOWA would all work together to support autistic students. As soon as the word “education” is mentioned, NDIS immediately bows out and says “That’s the Department’s responsibility, not ours” and families are unable to use funding for anything vaguely related to education including home education. As soon as CAMHS hears the word “autistic”, they instantly say “we’ll have to discharge you, we don’t provide services to autistic children and young adults”. Some psychiatrists are now saying “Sorry we only take straightforward ADHD cases, if they’re autistic as well we can’t take them on”. When AISWA schools hear the word “autistic” or “PDA” then say “Sorry, we don’t have the resources to support your child adequately, you’ll need to provide and fund an EA”. There is ZERO interaction between school supports and other service areas that autistic students are accessing. They actively try to handball our children and families from one agency to another. As if life wasn’t hard enough for our families already….(Leans forehead against palm of hand).

What is the interaction between State and Commonwealth-funded services?

Who knows?? The multiple schools our child attended all declined to answer

our questions on funding and support provided by government. Interestingly, however, when our local MP delivered a grievance on our behalf in Parliament to the then Disability Minister, all the funding figures were readily

In conclusion, I believe that is critical that our WA education system is drastically changed and dramatically improved to meet the needs of our autistic children and young adult student community. In the words of the Square Peg Round Whole group we need to “adopt neuro-affirming models of care, address systemic discrimination and disproportionate disadvantage because of policies such as suspensions and exclusions policy”. Finally, I believe that the voices of autistic students, autistic adults, as well as parents and carers, should be listened to and incorporated into all matters that affect every Western Australian autistic student in DoE/ AISWA/CEOWA schools.

Thank you for your time and consideration of my submission.

Kind regards