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Education and Health Standing Committee
Inquiry into support for autistic children and young people in schools
Personal submission
Introduction and Thanks
Firstly, please accept our thanks to the Committee and staff for convening this inquiry and giving your consideration to the support of autistic children in schools. We are also very heartened that the terms of reference uses language preferred by a majority in the autistic community – autism, autistic children, and also that the terms clearly state that vaccine links and cures for autism fall outside the terms of reference. It is heartening to feel heard by the language choices and comforting to know that the committee will focus on real issues that will make a difference to the lives of children.
This submission is based on our family’s experiences in the school system with some reflections on broader impacts we have seen on the way through. Even when home schooling we are subject to Dept of Education policy through registration and moderation, and I have some comments to make on this process too. We have had to withdraw our children from schools to educate them at home and have this in common with so many autistic families we meet. Have to, not choose to, it is not a choice when your child is dysregulated, and many including us have felt forced by schools to make that choice.
We would also like to acknowledge the other families and advocates who have taken the time to contribute to this inquiry. It takes effort to tell your story; it can be an enormous emotional drain to re-live difficult experiences, as my family knows well.
We are angry that these stories fall on deaf ears when relayed to the Education Minister.
We are outraged that the Department of Education investigates its own performance against the real complaints of so many families, regularly finds there is no case to answer and don’t recognise a systemic problem.
We are disappointed that the institutions that are charged with educating and caring for our children can send them home to us so disheartened.
We are sad that autistic people are seen as disordered or broken rather than interesting and talented, autistic people bring amazing perspectives.
We are hopeful that bringing together the voices of people from all viewpoints can motivate real, systemic change.
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Terms of Reference
The terms of reference appear to be driving towards a planning and resourcing exercise.
Planning requires us to look at how many autistic students are in schools now, whether there is a projected increase (or increase in diagnosis), whether these children will need support and the type of supports they will need.
Resourcing requires us to look at the existing skill levels, personnel and facilities, whether these will cater for future demand and what additional resources need to be allocated.
Both planning and resourcing hinge on some fundamental questions. These include questions such as:
Are the existing programs fit for purpose and do they meet the needs of
autistic students and achieve the required outcomes? Are all autistic students currently appropriately supported? Does our current investment in supports represent good value? Should our future investment be expanding existing programs or moving to develop alternate supports?
Section 1 of the terms of reference is about demand for supports and
demographics. Section 2 invites comment on current supports and whether they are coordinated with other services to meet student needs. Section 3 addresses alternatives that could be considered.
- Prevalence of autism in WA & projected demand for support in schools
Our experience with our autistic children in schools has been:
1.1 Both our children have autism with a PDA profile and would also be classed as gifted / 2e.
1.2 Both changed schools at least once in primary school to seek a better fit (not including the transition to high school) which was disruptive to their schooling and came after repeated, failed attempts to meet their needs at the schools we left.
1.3 Both our children have home-schooled, one for two years in upper
primary, the other for part of Y6 and from Y8 on.
1.4 Both our children have experienced “School Can’t” including self-harm ideation and burn-out, leading to the need to de-school then home school.
1.5 Both identified as autistic PDA well into their primary school years, and it surprises us given their traits and the difficulties we faced that teachers did not identify this to us as possible autism. We believe this demonstrated a
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lack of understanding of autism among school staff and, with both our children being female, on presentations of autism in girls that differ from traditional understanding of how autism manifests. Schools should see autistic children all the time and be able to recognise traits and raise it with parents. For a family autism can be hard to see, because there is no basis for comparison and parents are often neurodivergent too.
1.6 PDA was not a well-known profile when our first child was provisionally diagnosed in Y5, and the second child had such a different presentation that it was not suspected by us until she reached School Can’t in year 6.
1.7 We were at the time uneducated about autism and were associating their difficulties as giftedness, health problems and sensory difficulties, but gaining little traction at school to address the difficulties through IEP or similar.
1.8 In hindsight, the cause of the difficulties was actually unimportant to resolving them, but the unwillingness of school leadership to make accommodations meant problems were never addressed.
1.9 Our childrens autism profiles and the lack of appropriate
accommodations have significantly negatively impacted their ability to access education at school.
1.10 The lack of accommodations at school and the consistent need to advocate and deal with child trauma and the need to home school have placed significant stressors on our family and relationships including one of us not being able to work for eight years and counting.
Our observations about future demand for supports in schools are:
1.11 Awareness of autism and PDA has grown significantly and as a result the number of children being identified as autistic, and identified earlier, is expanding rapidly.
1.12 Co-morbid conditions need to be considered.
1.13 Parents are becoming more aware and insistent that schools need to provide appropriate supports and accommodations for their children.
1.14 Parents of autistic children are accessing networks, external supports and education on autism more regularly, which is shaping and raising their expectations.
1.15 As economic conditions become harder for families it will be less possible
for one parent to take on home-schooling duties, nor is it fair that the
school system is so unsuitable for children with autism that families are faced with no choice but to home school.
1.16 The burden of home schooling and of supporting students in school
settings lies mostly with women and this is having a detrimental impact on their employment, financial security and relationships.
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1.17 The expectations of families on how support should be provided varies widely among families, but is definitely shifting and becoming more clear and more informed about good practice. Families have an expectation that the people caring for their children will be similarly well-informed and able to meet their child’s needs. The trend appears to be towards wanting inclusion and in-class accommodations.
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Current support available for autistic students in WA schools Some autistic students are supported under the specialist supports of the Dept of
Education. There has been significant investment in these systems that were
developed to cater for students with special needs and include the provision and recent expansion of specialist education centres. The specialist programs are ABA and Team Teach. My understanding of these (as expanded below) is that they are outdated methodologies that do not cater appropriately for autistic children and it may be timely to recommend an independent review of their use and effectiveness.
ABA interventions aim to change autistic Team Teach is also underpinned
behaviours to a more neurotypical by behavioural expectations and
presentation. includes a heavy focus on how to
safely physically restrain a Why?
dysregulated student.
These children are autistic. They will still
It is hazardous to everyone be autistic, but will be concentrating so
involved and does not solve the hard on maintaining their ABA teachings
problem or teach the child that they can no longer focus on
regulation. learning.
The approach is consistently This therapy takes them out of classes,
raised by parents as being the teaches them that they need hours of
tipping point for their children fixing, incorrectly assumes that a reward-
that causes anger and distress in based system is appropriate and is
the short term and trauma in the consistently opposed by autistic adults
long term. including many with lived experience.
For those autistic students like our children who are outside these programs, schools use Individual Education Plans and other in-school mechanisms. How these are developed and with what input will determine the types and levels of supports provided and whether the supports are appropriate to the students’ needs. The types of supports available appear to vary widely.
Our experience was:
2.1 We were never offered and did not access specialist autism supports for either of our children.
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2.2 Both our children were calm and strongly masking at school, never attracting behaviour management consequences. However due to their PDA profiles both became highly anxious. Accommodations were sought to mitigate this but because the acting out came at home, the schools did not see fit to lower demand at school.
2.3 Our older child was generally not catered for in primary school in terms of presence and/or suitability of IEPs. IEPs did not take parent input into good account. She developed School Can’t during Y4 and we withdrew her to home-school. Some teaching and administration staff had been excellent but their impact was hampered by the decisions of school leadership and requested accommodations were denied (generalised representation).
2.4 We accessed diagnostic advice and psychometric testing for our older child while home schooling. The first practitioner was unfamiliar with PDA, and while we were not aware of the profile either, we could tell that the advice given did not accord with our experience of our child. The second practitioner provided us with the first information we had seen on
PDA and it was a good fit. Diagnosis was not available for PDA at that
time in Australia. We were advised on PDA parenting strategies and
advised only to access therapy if needed, which it was not. The PDA
parenting strategies were effective and sufficient given the high school program suited our child.
2.5 Our older child decided to return to school after home schooling in Y5 and Y6, and earned a place in a GATE school program which provided adult style learning and challenging extra-curricular activities that suited her autistic PDA and gifted education needs. We discussed an IEP with the school but they noted the large cohort of neurodiverse students and the expertise of the school and their staff in catering for a broad range of
diagnosed and undiagnosed children. After agreeing to trial this we
never asked again. She had similar peers in a highly inclusive cohort, and teachers who were well used to encountering neurodiversity. After successfully graduating she is now at university and living independently.
2.6 Our younger child changed to a private school in Y4 which provided a welcome change in environment. Again, we were aware she was having difficulty but had no diagnosis. Mounting demand avoidance as a result of some aspects at the school saw her crash and we sought medical help for illness and were now aware of autistic and PDA traits which had become much more pronounced.
2.7 I consulted with her high school prior to commencement to advise them of her condition and the amount of school she had missed. They put some measures in place to assist including curriculum modification, ability to access the library and a sensory room.
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2.8 As her attendance dropped across Y7 accommodations were
negotiated back and forth and support was provided but she found classes too noisy, completed no assignments and often missed school. We were finding it difficult to book a diagnostic assessment and this did not become available until late in Y7. By this time the School Can’t was well established and she had reached burn-out. We agreed that home schooling was now our only option.
2.9 After the diagnosis of autism PDA we sought therapy to assist her. This
therapy was ineffective and likely very detrimental to her recovery, so we withdrew after about a year of therapy.
2.10 It has taken nearly two years for our child to recover from burn-out to the point some home-schooling is possible. She did not start to recover until we promised not to try to re-engage her at a school. She is now happy again, we hear her singing and she engages with immediate family and some extended family and friends.
2.11 We are now due a moderator visit and are very concerned that we will not be able to demonstrate sufficient progress. The Dept of Education policies appear to have become much more insistent on progress against the WA Curriculum and contain significant threats of de-registration if this is not demonstrated. We know that returning her to school will return her to her previous state of self-harm ideation and despair.
2.12 We have found that our child’s learning style requires us to do only one subject at a time and she can’t sustain long periods of learning. She tolerates only short bursts of learning over a few days with weeks in between.
2.13 She appears to have significant learning issues that manifest like
perfectionism and prevent engagement with learning, but we do not feel qualified to assess or address these. We have no idea where to turn for support. I have booked an assessment at the Dyslexia Speld Foundation but their expertise is unlikely to cover this issue.
My observations about the supports available in schools are:
2.14 It is very difficult to access the appropriate supports for autistic children who are not academically delayed and who mask at school.
2.15 Current approaches by schools to School Can’t are unhelpful and often
very detrimental. Kindness and patience helps but it is the lack of
accommodations that needs to be addressed in the first place to prevent trauma and burnout.
2.16 Inclusiveness in the school environment is vital but this will take deliberate
strategies such as upskilling and educating staff on neurodiversity,
providing role models, making accommodations much more accessible, providing choice, perhaps clumping students in schools or classes to allow
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for friendship groups and sensory needs, and many other small but vital changes. This will take a consultative process with families, students and neurodiverse adults to design and implement.
2.17 The autism supports pointed to by the Dept of Education (ABA and Team Teach) are unsuitable for many if not all students. An independent review should be carried out expeditiously, given the voices and concerns that have been raised about these.
2.18 Parents home-schooling autistic students need better support, including
resources, funding, respite, access to expert advice, more formal
networks, and access to peer-based programs such as PEAC.
2.19 The Dept of Education’s home schooling registration and moderation policy pressure needs to come off and needs to be less punitive, more
helpful and understanding. The period of burnout or deschooling
required by the majority, if not all students moving from school to home school needs to be acknowledged and supported by the Dept.
- Strategies in other jurisdictions We have very little to add in this section other than to say that reading widely and networking have been very useful for us.
Groups such as PDA Perth Parents Support, PDA Australia, Square Peg Round Whole,
Home School groups, School Can’t groups and others have provided ideas, support and companionship in our journey. We can’t thank them enough.
There are a lot of valuable educators online including Kristy Forbes, Dr Naomi Fisher,
Greg Santucci, Dr Ross Greene, Dr Mona Delahooke, Dr Linda Murphy and many,
many more. Seminars, books and podcasts are widely available to help us educate ourselves and find ideas to help our children.
For home school education of PDA children, we are gaining a lot of ideas from the work of Dr Naomi Fisher who has done a lot of work looking into child led learning in the UK. PDA has been an accepted diagnosis in the UK for much longer than here in Australia, and we are sure that would be a good place to look for ideas on how to better accommodate PDA children in schools.