Submission for the inquiry into support for autistic children and young people in schools
Author Credentials:
Being an Accredited Disability Social Worker in Western Australia, over the last 20+ years, I have worked with over 500 individuals and families across metropolitan and regional areas, mostly impacted by autism. I have specialised in complex presentations of autism with co-occurring conditions (primarily psychosocial) and aggressive, challenging behaviours. This, in addition to my time over the last 3 years working within the Department of Education (DOE) Western Australia as a Social Worker in Statewide Services, means I am able to comment first-hand on many experiences of students with autism as well as those of their families, schools and education staff that I have supported and engaged with. While I have encouraged many families to share their stories and experiences directly, this submission does contain some situations of those who do not have the time, energy or capacity to do so themselves.
I am also a parent of a 12 year old boy with autism, ADHD and a trauma background who now attends a mainstream school in the Perth metro area. I previously home-schooled him for 6 months while trying to find a suitable school and organise an appropriate gradual transition with suitable scaffolding.
Students with autism – WA Statistics
According to Australian Bureau of Statistics, 2021 schools dataset:
- There are 1113 schools across WA supporting around 223000 students.
- Of those students, approximately 10% have diagnosed disabilities and 89% of those are in mainstream schools.
And according to the NDIS quarterly report, 31st March 2023 Appendix I:
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Approximately 22.5% of NDIS participants are 0-6 years old, 22% are 7-14 and 7% are 15-18 years old (Table 6)
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Autism is the most prevalent disability type affecting 35% of WA NDIS participants (Table 8)
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7.9% of WA NDIS participants are First Nations people (Figure 1) and
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8% of WA NDIS participants are from CALD backgrounds (Table 11). From these statistics, we can reasonably extrapolate the following:
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the number of students in schools with autism over upcoming years is likely to increase, especially given the current number of children with autism in high-school is likely under-represented due to a lack of recognition and diagnosis in earlier years
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students with autism in upcoming years are most likely to access mainstream schools
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students with autism who come from First Nations and CALD backgrounds are likely to experience double or triple disadvantage and may require additional resourcing and targeted support accordingly.
Factors affecting autism prevalence
In terms of potential factors affecting the prevalence of autism in WA, from my professional experience I have noted 4 key elements that I feel compelled to comment on.
Access to timely autism diagnosis. Within WA there is a crisis within the paediatric sector that is significantly delaying timely assessment and diagnosis of children with autism. The severe shortage of Paediatricians as well as the blown out assessment waitlist times (of up to 2 years in some cases) is resulting in many children
with autism not receiving timely assessments and therefore not being able to access relevant early interventions. It is even more problematic for families in rural and regional areas who are having to travel to Perth for assessments (if they can afford to do so privately) due to extremely limited or non-existent local assessment options.
It is my experience that many children’s autistic traits are not being picked up on until the child enters the schooling setting when their differences (especially learning, sensory and social needs) are more noticeable whilst in relatively unfamiliar environments. In their familiar home setting, unintentional scaffolding and support can mask traits, but when the child enters school, traits become more apparent. Waiting 18 months for assessment however causes the child to struggle in the academic environment throughout this time, sometimes experiencing trauma, bullying, isolation and/or separation anxiety that can have lasting negative ramifications for the remainder of their educational journey and result in greater intensity of educational support need than that which would have been needed if an earlier diagnosis and intervention had been provided.
First Nations and CALD families. The disability rates of First Nations and CALD families I believe is significantly under-represented. Over the years, many of these families I have worked with were not entirely honest about their child/grand-child’s difficulties when autism assessments were being undertaken. In my exploration around this, it became apparent that the drivers of shame and fear were the two primary reasons for this. Shame at times because of cultural beliefs around disability, recognition of disability stigma and/or beliefs that one should manage disability within their own family unit privately; and fear relating to that of being judged as the cause for the child’s difficulties/behaviours and that this may result in Child Protection involvement.
Genetic and family pre-disposition. While there is no single gene responsible for autism, there is a clear genetic component. It is my experience that several children with autism in schools come from families where there is an autism or developmental delay history. For some of these families, the child at home may be exposed to maladaptive coping strategies within their family unit and may utilise the same; thus necessitating greater support, intervention and accommodation within school settings than other students with autism.
Socio-economic disadvantage. Obviously while this doesn’t directly influence the prevalence of autism, lower socio-economic disadvantage can both impede the rates of assessment and diagnosis as well as potentially impact the severity of support needs for diagnosed children. And there is vast evidence demonstrating that families of children with disabilities are more likely to experience financial hardship than the average population. Families who are struggling financially day to day, ofttimes do not have the finances available to facilitate assessment or recommended interventions.
I have been called in to work with families struggling financially on multiple occasions to help facilitate access to assessment. The costs of getting to and from required GP and specialist appointments, even if said appointments are bulk billed can be prohibitive, and if appointment times are offered that don’t coincide with pay days, these appointments may not be kept.
Problems with Current Supports available for Autistic Students in WA Schools
Within WA, there are range of evidence-based practices being implemented across the school system, that are effective in supporting the vast majority of students within mainstream school environments, providing adequate Individual Disability Allocation (IDA) funding amounts have been allocated to enable this. There are also specialist support services such as the School of Special Educational Needs: Disability (SSEN:D) within Statewide Services that public schools can access which provide specialist teaching staff highly skilled in disability interventions who can assist schools struggling to support students with disabilities effectively. However, during my 3 years working within the Department of Education, I have noted a number of issues that are problematic and/or could be improved:
Disability Funding within schools. The Individual Disability Allocation (IDA) funding program is the current means of providing financial assistance to WA public schools needing to make adjustments for students according to disability need. The process involves the confirmation of disability and a rigorous and time intensive online application to determine required funding levels. Funding can then be flexibly used by the school according to perceived needs. However, there are a number of flaws with this system as outlined below:
The funding support offered at each IDA level is woefully inadequate. Current IDA funding rates at the maximum level do not allow for the most extreme complex cases where 2 or more staff are required at all times to safely support a student. When this level of support was needed, the schools I worked with advised they have pulled funding from other students with disability with lower needs, as well as from other areas in the school to enable this support. There seems to be an increased frequency of students with autism demonstrating significant physical violence and behaviour placing staff and students at risk, and in these cases, additional funding needs to be made available. I currently know of 6 families in Perth who are not sending their children with autism to school due to inadequate resourcing to safely support them.
The funding application process is not well known. Many teaching staff are being instructed to complete IDA applications without adequate information about student need, or without knowledge of the process and allowing adequate time for comprehensive completion. When brief answers are provided, lower rates of funding are allocated. Staff need more training around this and need to be allowed significant time to enable them to complete this comprehensively. In education support schools I have worked with, there is one staff member who sits with the teachers and together they complete the application, the process taking well over an hour.
For teachers in mainstream schools not familiar with the process, far more time needs to be allowed for, and/or the option of having an IDA consultant to call and talk through the entire application. The manual for going through an IDA application is comprehensive, but is underutilised by teaching staff who are time poor.
There is not enough accountability and review of how funding is being used to benefit each specific student with disability for who the allocations were initially made for. While schools having freedom to allocate disability funding as needed can be beneficial, there needs to be greater accountability, transparency and reviews around how funding is being used to benefit the specific student with the disability for whom it was initially allocated. From my own personal experience as a parent of a child with autism, as well as from my time supporting other parents in a professional capacity at school meetings, Individual Education Plans (IEPs) are frequently developed without input from families who are expected to review and sign them without explanation or offer of a meeting.
It appears in the majority of mainstream school environments that it is on the onus of families to request meetings and ask to contribute to IEPs. And parents have little power over addressing this, as information of what they should expect and how to ensure it occurs is not made available to them.
The IDA autism diagnosis criteria needs review. Since the revision of Autism Assessment processes allowing for single practitioner autism diagnoses, a new problem has arisen. Even if an appropriate autism diagnosis is provided that is recognised and funded by NDIS, if it doesn’t meet specific IDA criteria it will not warrant IDA funding. In one instance, I worked with a student who received an ASD diagnosis by a registered psychologist and the diagnosis was supported by a non-affiliated occupational therapist. However because the psychologist wasn’t a clinical psychologist, the IDA policy required a Paediatrician to ratify the diagnosis and wouldn’t provide funding support. With Paediatrician waitlists being 18 months, we attempted to get an exemption but to no avail. This student was accessing support through NDIS who recognised the diagnosis, but Education didn’t. The IDA policy therefore needs reviewing to accommodate single practitioner diagnosis.
The implementation of disability support strategies is heavily reliant on the skill and commitment of individual teaching staff and school culture. Throughout the 3 years I spent working within DOE, and for many years prior to that when I supported countless parents at school meetings relating to their child with
autism, it became clear that the culture of the school and the commitment of individual teaching staff is primarily responsible for the quality of inclusive practices and disability learning accommodations that are offered for students with autism. There were and are many, many teachers that do not feel qualified or confident to provide this support for autistic students, and there are others that feel they are competent but are unwilling to adjust support strategies to suit the individual child and instead provide a standardised selection of adjustments only.
Autism as we know is a spectrum and the needs of each child can be extremely different from other children with autism. Therefore support measures, academic accommodations and strategies employed need to be varied and considered according to individual need. They also need to be reviewed frequently and changed up to maintain their effectiveness. Teachers I’ve spoken to who graduated a few years ago, detailed that only one or two units in their whole course touched on special needs. But given the increasing rates of children impacted by autism attending mainstream schools, this needs to be addressed to build the confidence and capacity of teachers.
Statewide Services SSEN:D staff have limited power over schools. When schools and teaching staff are struggling to accommodate students with autism, they are able to apply to access support through SSEN:D and specialist disability consulting teachers can work directly with existing teaching staff to develop appropriate learning adjustments and strategies for the autistic student. But in my experience, SSEN:D staff have very limited ability to ensure schools follow their recommended strategies, and it is usually left up to the school to implement recommended support strategies. On the occasions when schools don’t, there is no formal process available to address or enforce this. While the Education Region may be notified that the school is not implementing the strategies, they also seem to have limited power to influence outcomes. In my experience, unless a student with a disability is put up for exclusion and the exclusion panel makes recommendations detailing that the school hadn’t been implementing adequate measures, there is no higher level process to ensure schools are compliant if families themselves aren’t.
Parents have limited awareness of what disability accommodations may be available or appropriate to ask for and what pathways to use when needing to complain. Working within DOE, I primarily supported students with autism diagnosis and/or their families who were having significant and prolonged difficulties with their child accessing education. In virtually all of the cases I worked with, families were not aware of what sorts of disability support and accommodation could be provided to assist their child’s learning and inclusion. When inappropriate or even harmful strategies were employed, families either attempted self advocating (often without the best methods resulting in them being perceived as troublesome) or started keeping their child home from school altogether – in some cases I worked with, students hadn’t been attending school for up to 18 months and no home learning or alternative program was provided.
Parents generally aren’t aware of complaint pathways or processes, especially when the parent has their own limitations or disability difficulties, and often found it easier to disengage than challenge the systems that are foreign to them without support. When parents wanted to look at a more suitable out of area school for their child, they were generally rejected straight out, unless the Education Region had been contacted and supported the enrolment. And in the cases where autistic students were unsafe (being likely to cause harm to other students or teachers) and weren’t able to be accommodated in their local school (mainstream or ed support), the suitably skilled special education schools were at maximum capacity and unable to accept them.
Insufficient specialist Education Support Schools for the most complex cases requiring isolated learning. While inclusive education is encouraged and is best practice for students with disabilities, there are some students with severe complex, violent behaviours that require isolated and segregated learning to ensure their safety and the safety of others. However, there are limited schools across the Perth metro area that can offer this (and none regionally that I am aware of). Those that do exist are already all at capacity and struggle to take on more students without risking the safety of existing students if they do so. The use of protective
isolation and other restricted practices need to be monitored and used appropriately, but there are instances where appropriate requests for these are not being approved.
In more than one instance I worked with students with ASD requiring at least 2 staff with them at all times in a segregated learning environment. As this couldn’t be provided, in one instance, the student’s IDA funding was used to employ a disability tutor to provide educational support to the student with a DOE staff member additionally present for all teaching sessions. These students are the ones that are falling through the gaps.
Yearly transition planning for students with autism insufficient. Students with autism generally struggle with change and yearly transitions. On top of that, many students also struggle with the seasonal uniform changes and the return to school after school holiday breaks of any length. In my various roles over the last 20+ years, I have found that teaching and supporting parents to implement transition planning activities for their child to assist with returning to school after holidays and for a new year of school, results in better outcomes for the child. However, school systems aren’t always conducive of this.
For my own son, prior to the start of every school year, we visit the school grounds 3 times in the two week leadup to re-familarise him with the site. This can be tricky when grounds are locked. I also organise playdates with a couple of classmates in the two weeks before class starts to remind him he has friends and reduce his anxiety for the return to school. We try to organise a visit to the new class and meet the new teacher a day or two before classes start, but sadly this has always been left for me to ask for and insist on – it has never been proactively offered by the school to us. Having a photo of a class teacher and the names of one or two classmates prior to the start of a new school year goes a long way to help with transition planning. But again this information is rarely communicated proactively with parents.
Successful strategies for supporting students with autism in WA schools
In spite of these difficulties, there are numerous successful strategies that are being employed to support the learning and engagement of students with autism. In my experience the top 10 of these are:
Making a number of appropriately supervised safe places and a sensory area for students to access when overwhelmed/overstimulated along with a clearly communicated process of how and when the space can be used and for how long according to each individual student need. Having one or two designated spots only may not be suitable if a student needs isolation at these times.
When non-essential mainstream classes are able to be dropped for a specific life-skills class that works with students around topics such as ‘how to manage bullies’, ‘how to develop and preserve friendships’, ‘ how to tell who is a good friend’, ‘why education is important’, ‘how to review notes ready for a test’ etc depending on the age/stage and appropriate need of the children.
When restricted practices have been approved and have had to be used, schools proactively reach out before the end of school that day to advise families of this, and to organise a followup meeting with key parties to discuss and review the process.
When single or double page student profiles with photo are developed in conjunction with the student’s family that includes preferred scripts for staff to use for de-escalation and that lists current interests and likes as distraction and redirection prompts.
When consistent communication and regular meetings are offered to families to check in as to how things are going and to keep up to date with changes at home that may impact school engagement, learning and behaviours.
When schools positively engage and collaborate with other external services such as NDIS therapists, behaviour support practitioners or medical staff such as paediatricians. For example, when schools invite therapists to planning meetings around students or when a school makes behaviour data available to a Paediatrician to assist with medication doseage decision making.
When schools make behaviour, attendance and social engagement data available to families to provide to NDIS to assist with their funding decision-making. In instances where this information has been shared with NDIS, students with ASD have generally received more appropriate funding according to disability needs, which in turn often has a ripple effect on student wellbeing at school.
When schools respond quickly and appropriately to bullying/social exclusion of students with disability, as well as family complaints or concerns, demonstrating a commitment to genuine care and inclusion.
When schools offer flexibility within their usual policies and procedures, according to need - such as allowing some students with autism a later start and earlier finish if needed to avoid the noisiest unstructured times at schools if this is a known trigger; staggering lunch breaks for some students as needed; encouraging movement or sensory breaks within class times for some students.
Developing Individual Education Plans that are genuine, have parental input and reflect student needs and accommodations in ways that meet reporting requirements but are also easily understood by parents/carers – having a positive and growth mindset approach.
Summation and Recommendations:
In writing this submission, I have outlined my very real concerns around how schools are going to be able to cater for the growing number of students with autism moving forward. There needs to be increased disability resourcing made available, more training and support on how to apply for it and more training for teachers overall around inclusion strategies for children with autism. There also needs to be a review of the current IDA policy and new policies developed that outline processes for supporting students with autism, reasonable adjustments and what they may look like, and an accountability and complaint pathway to ensure schools are held to account. And this information needs to be made available to parents as well. It would also be helpful if schools had a series of information available to them (eg. through IKON) provide to parents of children with disabilities that cover topics such as how to best support their child with attendance at school; how to support transitions eg. returning to school after holidays or for a new year with tips and practical ideas of what they can do.
One effective way to mitigate some of the factors around the prevalence of autism and to support better student support, is to provide Social Workers in schools specifically to support students with autism (and their families). Social Workers are extremely skilled at navigating systems and services and advocating for fast-tracked assessments when needed. They are aware of the additional challenges facing CALD and First Nations people and are able to use highly developed interpersonal and conflict management skills to generate trust and support open and honest communication around student difficulties. Social Workers are also able to broker positive engagement strategies with families who experience their own challenges and disadvantages that hinder the assessment process and/or consistent and compliant engagement with a range of external services. In addition to this, Social Workers are able to compile appropriate documentation from the school setting to provide to NDIS to ensure that the students needing additional NDIS funding are able to provide this information to NDIS. When I have seen Social Work support made available in schools to provide the aforementioned assistance, positive outcomes have been achieved for the student, their family and school staff and engagement and wellbeing levels have improved for all parties as well.
It is reasonable to assume that as the overall number of students with autism increases, so too will the number of students with autism who also have complex and challenging behaviours. They will consequently take an increased toll of the wellbeing of staff and students, as well as educational resourcing; and are likely to themselves experience trauma within the school setting.
Some alternative learning options need to be made available for these most complex cases, as current alternative learning options (such as Behaviour and Engagement schools; School of Alternative Learning Settings and SSEN:Medical and Mental Health) are not equipped to manage these students with complex autism presentations. Creative approaches are needed to cater for these exceptions to the rule, which are far more than just a handful, as I alone know of 10 families who have had their children with autism unable to
attend school for between 6 – 18 months. Despite Education specialist services involvement, there have not been suitable alternatives provided and these families do not wish (or have the capacity) to home school. I do not have the solution for these situations, however some potential alternative learning options that might be beneficial may include:
Offering a level of funded tutoring support for students while they are not school ready – either in the home environment or at a safe space made available in their local area
Providing project based learning around interests, offered either individually or in small groups with high levels of resourcing
Incorporating regular community access and engagement activities as part of an alternative education curriculum for those that need
Offering more online, game based learning options in core subjects (maths and literacy) and ensuring families have the ability to access this at home (the know-how of how to login; the devices needed etc).