Submission 20 — Name Withheld — Inquiry into support for autistic children and young people in schools | External submission

Submission re Autism in Schools

June 2023

1 Background and family history

We are making this submission to the Education and Health Standing Commit tee’s Inquiry into support for autistic children and young people in schools. We do so in our capacity as the parents of two autistic boys, Z aged 9 and S aged 5, both students in the public education system.

Our family is from Perth, but both boys were born in the USA. We returned to Perth when Z was 5 and S was 2. Our boys have had distinct experiences in the same primary school in Western Australia that illustrate both success and failure in support of autistic children. We wish to share the boys’ stories with you, and to summarise issues related to current support available for autistic students in WA schools that are revealed by their experiences (Point 2 in the brief to the Inquiry). We also suggest potential responses that could be consid ered to address each issue.

1.1 Z’s story

We appreciate that a lot of hard work has now placed Z on a more positive tra jectory. This has included the intervention of the Schools District, intensive support from SSEN:D, dedicated EA time, help from our local MLA, and truly wonderful support from the Education Department’s complex cases team (and if the inquiry is able to provide personal congratulations, from this team has been exceptional).

Nonetheless, we believe Z is substantially worse off - in terms of his mental health and his education - than he would be if his school had had the knowl edge and resources for a more appropriate response. Furthermore, his shortened school days have placed an enormous home-care burden on our family. Both parents work full-time, and managing Z’s home-care has negatively impacted our careers, community engagement and mental health.

1.2 S’s story

2 Key issues and potential responses

2.1 Early education providers and psychologists do not offer parents appropriate recommendations

Families in our situation should advised to: (i) contact Childhood Developmen tal Services (CDS) and (ii) contact Wanslea (NDIS early intervention partner) for an assessment. These actions can occur in parallel with other interventions.

Potential response: Ensure that all schools have information about NDIS early intervention options - particuarly teachers working with children younger than 6 (to whom this pathway applies). Recommend all teachers refer par ents to NDIS early intervention and CDS if there is any suspicion of possible autism. Ensure these recommendations are understood and made through early childhood health care providers (GPs, psychologists and paediatricians) as well.

2.2 There is low awareness of emerging autism profiles and how to manage them.

The low rate of diagnosis of autistic girls is rightly receiving attention, and high lights how diagnosis and understanding of autism are inhibited by ‘stereotyped’ expectations of the condition.

Children like Z, with symptoms of PDA, are often eloquent, with extraordinary vocabularies, emotional literacy, and make appropriate eye contact and are so cial. They do not fit the autism stereotype. However, children with PDA will ignore, argue and fight attempts to make ‘demands’ on them. Demands may be

simple requests like ‘please put your hand up before you talk’ or ‘please don’t do that’. The child perceives such demands as acutely threatening. Outwardly, the behaviour is perceived by others as intentionally disobedent and manipulative.

Basic disciplinary responses for a child with PDA are counterproductive, as being told ‘no’ or entering into a dispute is dysregulating. Common autism strategies (e.g. tight scheduling) may also be perceived as demanding and prove ineffective. Autism in general is incredibly multifaceted. Even for people who fit a classi cal ‘autism’ trope, a blanket management approach can be ineffective and poten tially traumatic. PDA autism is particularly difficult for parents and teachers. It doesn’t look like ‘autism’, doesn’t always respond well to ’normal’ autism management, and results in children who defy or ‘meltdown’ at everyday re quests.

An unfortunate side effect of lack of awareness of PDA and other diverse autism profiles is that schools often blame parents for the children’s behaviour.

This need to assign blame undermines relationships in a situation when constructive parternships are essential. Educating school staff that autistic behaviours are not a conse quence of parenting choices would be greatly appreciated by parents.

S’s autism profile, conversely, aligns closely with the more familiar “Asperger’s type” profile. It is relatively mild, does not result in defiant or noncompliant behaviour, and S thrives on the predictability of the weekly and daily routine in school and opportunities to extend himself. School has been able to accom modate his needs effectively.

Potential response: Ensure that schools are aware that autism takes many forms and educate educators about the different possible presentations. Differ entiate management in line with the autism profiles exhibited by children. Be aware that some forms of autism cannot be managed effectively with the tools used for other forms. Do not blame parents for their children’s disabilities! Trust what the specialists are recommending.

2.3 Access to supports does not consider the impact of co-morbidities

Unfortunately, neuro

divergent children respond oddly and unpredictably to ADHD medication (and other medications) and can’t always safely use them. An autistic child with anxiety and ADHD is orders of magnitude more challenging to support than a child experiencing these conditions in isolation. Thus, the additive support model does not well align with the true needs of the complex child.

Potential response: Review how support is offered to autistic children with co-morbidities and whether the current system is appropriate.

2.4 Timeframes for diagnosis greatly delay children’s ac cess to support, and during these delays significant harm can occur to the child that could be averted if support were in place

We know that WA is in a state of crisis with respect to paedatrics, psychia try and psychology. Wait times are now in the order of years - we were told over 2 years in the public system for S to see a developmental paediatrician.

Potential response: If there are good reasons to believe a child is autis tic, that child should be offered appropriate support while they seek formal diagnosis. We believe that this is now taking place and applaud moves in this direction.

2.5 Suspension and expulsion of neurodivergent children is ineffective and harmful to the children

For a neurodivergent child struggling with the school envi ronment, suspension causes feelings of shame and failure, distances them from their peers, and sets them on the path to school refusal. It also creates consider able difficulties and stress for families who are already dealing with challenging circumstances and can strain relations between family and school.

Children should not be punished for being autistic, and parents should not be punished for their child’s autism. When a child is experiencing crisis, a one day ‘suspension’ is appropriate to give all parties time to calm down, recover, reflect and plan for new strategies. Conversely, longer suspensions as ‘punish

ment’ are counterproductive. It is our understanding that research shows that suspension for disruptive behaviour is in general ineffective (i.e. Duchesne et al

Chapter 14). Potential response: Critically review use of suspension and expulsion for neurodivergent children in schools.

As part of this we would request that this inquiry please report on:

The number of children with (or who subsequently received) an autism diagnosis who were suspended or expelled from WA primary schools?
The fraction of all suspensions or expulsions represented by these children? We suggest that such reporting should consider a sufficiently long timeframe to enable anomalies associated with the COVID-19 pandemic to be identified against background trends.

We suggest that Key Performance Indicators (KPIs) for the Education De partment could involve reducing these numbers.

2.6 Homeschooling is presented as a default solution. There is lack of transparency about children’s and parent’s rights and responsibilities within the school system

Numerous times during Z’s difficult periods, our family was asked by various school staff to contemplate homeschooling. This is not right. Z has a right to an education - this is part of the social contract. He also has a right to a peer group to help him develop social skills and connections.

As Z’s parents, we believe we should also have the right to pursue our careers and our ability to financially support our family, independently of difficulties the school system faces in accommodating a child with Z’s needs. We believe we make a significant contribution to the community in our roles as

We also recognise that NDIS does not offer assistance with education, so that if the education system cannot cope, there are no viable alternatives for families.

Too often, we had the sense that the school system was waiting for us to give up on school and start homeschooling. Such an expectation represents a willingness to fail kids like Z.

This sense that Z and our family were a ‘problem’ who ideally would just ‘go away’ was exacerbated by a lack of transparency around our rights and responsi bilities within the school system.

Potential response: Commit to making school a success even for the most difficult autistic children. View their withdrawal from the school system as a failure.

As part of this we would request that this inquiry also report on:

The numbers of children with (or who subsequently received) an autism diagnosis who left formal education for homeschooling?
The fraction of all homeschooled kids represented by these autistic chil- dren?

Again we suggest evaluating these statistics over a long enough period of time to differentiate COVID-19 impacts from background trends.

We suggest that Education Department KPIs could involve reducing these num bers.

To support such a goal, the Education Department could develop transpar ent lines of communication and review of children’s cases and offer parents a clear opportunity to raise concerns with a third party. We suggest reviewing the approaches taken at which provide similar opportunities for caregivers to raise concerns and seek review for mental health patients. Some thing similar for neurodivergent students in schools would be very helpful.

2.7 School staffand parents are not trained in appropriate crisis response; parents of autistic children generally cannot access training programs offering these skills

for children exhibiting pain-based (post trau matic) behaviours, a specific suite of crisis responses are used. We were for tunate to receive training in these techniques , and have found these responses successful in de-escalating Z. These skills are known as Therapeutic Crisis Intervention (for Families) - TCIF. They focus on emotional connection during crisis and a deliberate learning and debriefing post crisis.

We had previously on several occasions attempted to access TCIF training which is offered by CAHDS - the Complex ADHD Service. However, Z was excluded from CAHDS because of his autism diagnosis, and we were not able to enrol in training because we were not public patients.

More broadly, there is a wide suite of health services (e.g. the Child and Adoles cent Mental Health Service, CAMHS) for which autism is an exclusion criterion. That is, if you have autism you are ineligible for support from these Health Ser vices by default. This situation - which is extraordinary given the high rates of co-morbidity of autism with mental health conditions - while outside the remit of the Education Department - represents a major obstacle to obtaining ade quate support for autistic children, with repercussions for families and schools. It is our understanding that previous parliametary inquiries have highlighted that this is an untenable position, but that at present, autism often precludes children from access to a variety of mental health and neurodiversity related services (we note that some services, such as the Pathways Program, adopt ap proaches that are incompatible with autism, and we do not dispute the exclusion of autistic individuals from such programs).

Potential response: Train school staff in TCIF. This is a relatively small time commitment, the skills are highly transferable for conflict and crisis man agement, and it is effective.

Work with Health Services to make TCIF training much more widely available to parents and carers of autistic children (and beyond!). Review and if possible end the use of autism diagnoses as exclusion criteria for access to health care services.

2.8 Communication between SSEN:D, school and families is challenging

Communication is a persistent challenge. Family are not permitted to talk with SSEN:D providers. This can lead to both a sense of mistrust (particularly if relationships between schools and family are strained) and to pragmatic chal lenges.

Potential response: Review communication strategies and approaches be tween schools, parents, care teams and SSEN programs. How can better trans parency and mutual trust be built, and joint understanding of responses max imised?

2.9 Smart kids with level 2-3 autism are not well served by the current system

Even with EA time, SSEN:D support, dedicated space and huge amounts of effort by school and his parents, Z is not receiving an education comparable to that of his peers, or one that meets his intellectual abilities and needs. Obstacles include that the level of support available is less than Z needs, that his school lacks appropriate spaces (e.g. sensory rooms, quiet rooms) where autistic chil dren can withdraw safely, while the classrooms are small and crowded, which is dysregulating for Z. Many of these are situations that are outside the control of the school.

We have considered other schooling options for Z. Private schools we have ap proached indicate an inability to provide the support he needs. We considered enrolling him in a special education program - which could manage his autism

but it was unlikely to have a peer group with his intellectual ability. At this stage, we have no good alternative education options. The current mainstream education approach is not working optimally.

We feel that Z falls into a gap of autistic children who are very intelligent but also need high levels of support. These children are simply not served by the offerings of the current system. This is a very real and very sad opportunity cost

children like Z have enormous intellectual potential but cannot be schooled to meet that potential.

We suggest that this gap could be filled with an intermediate step - schools with specialised autism programs that cater to children with level 2-3 autism diagnoses who struggle in the conventional classroom but who do not have in tellectual impairment, or who are even intellectually gifted in some areas.

These schools could accept such children into their autism program and be resourced with dedicated trained staff, suitable space, and flexibility in their curriculum to enable autistic children to have both mainstream classroom ex periences and additional support. NDIS supports could potentially be used to consolidate provision of occupational theray, physical therapy, behavioural sup port and psychological services at the school campus, reducing burdens on the children and families to travel to receive these services. If e.g. every 4-5 primary schools and 2-3 secondary schools had such a program, the program size would presumably remain manageable, while students could reasonably travel to the

schools within the metro area.

Broadly, perhaps there is space not for a dedicated autism school which we understand has not been supported by the State Government, but for schools with dedicated autism support programs, so that kids like Z have somewhere to go that will meet their needs.

Potential response: Identify the size of the cohort of children who require significant supports to manage their autistic presentation but who nonetheless have a high intellectual potential.

Review the density of schools with specialised autism programs across the Perth metro area and regions. Compare to population centers with children and the expected number of children needing support. Can the majority of families access a suitable school within a 15 minute drive? If not, how will transport burdens on families be addressed?

Consider the costs and benefits of dedicated autism support programs for autis tic children who struggle in mainstream classrooms behaviourally, but who are intellectually capable of mainstream schooling.

2.10 We see no evidence of a culture of learning and con tinuous improvement for staff managing neurodiver gent students

While we appreciated the change in her attitude, fear of penalties in these cir cumstances is probably counterproductive. Inappropriate responses like can cause real psychological harm to the child. Someone who reacts that way to the child needs help so that they do not cause further harm. Generally their reaction does not indicate that they should face a penalty - it indicates that it’s incredibly hard to deal with neuro divergent kids in crisis, and that the individual lacked the training or personal capacity to do so.

We would hope that upon realising they’d made a mistake, someone like could self report and receive compassion and help. We suspect she

didn’t because she feared a penalty. This kind of culture will not result in adap tation and improvement in the difficult task of looking after neurodivergent kids in schools.

Potential response: Recognise that inappropriate responses to autistic be haviour in the school setting can greatly worsen outcomes for children. Remove penalties and fear for staff who respond inappropriately during crisis. Ensure that such staff are instead encouraged to self-report and obtain support and guidance in crisis management. Consult with other organistions that regularly manage difficult behaviour (e.g. to learn about models for care and training used in settings where staff face similar challenges.

Provide adequate time and resourcing for staffand direction to access and com plete already available training (such as the disability standards) and specialist training to stay up to date with the latest best practices. Strive to create a cul ture where failure is viewed as a learning opportunity for teachers and students.

2.11 There is no clear way to plan for autistic children’s ongoing education post primary school

We are keen to proactively plan for Z’s ongoing education, and believe that he will need to remain in the State Education system. We have repeatedly sought assistance to identify where he would be best placed for secondary education, and have asked for this help from SSEN:D and from our complex cases coordi nator. We have been unable to obtain a response or guidance on this issue at all.

With such a complex child and such a difficult history, we believe we need to lay the groundwork for his transition to high school as early as possible, but there does not appear to be knowledge transfer between primary and secondary educational support systems to enable us to do this. For example, SSEN:D staff indicate that they are unaware of secondary school options as their expertise lies in the primary schools only.

Potential response: Equip support staffworking in primary schools (SSEN:D, complex cases coordinators) to find information about secondary schooling op tions for the children they support and communicate these to parents. Work with parents to develop proactive, K-12 education planning for children with complex needs.

3 Conclusions

We recognise that our voices here represent only one story among the myriad stories of autistic children in the State School System. We have endeavoured to be constructive and as objective as we can be in sharing our experiences and opinions based on those experiences - but obviously we are sharing a difficult

story about our family, and we cannot pretend to be completely dispassionate.

We believe that current supports are adequate and suitable for students like S.

We believe current supports have represented a gross failure for students like Z.

Our family’s struggles are ongoing. We have not reached a resolution for ad equate education and support for Z. We repeatedly find ourselves falling into cracks in the Education, Health, Community and Disability sectors (we have not explained the full scope of these here as we largely confined our feedback to educational issues). Inhabiting these cracks is harmful, exhausting and un sustainable. We truly hope that this inquiry will lead to meaningful reforms to assist students like Z, and families like ours.

We would be most willing to meet with the inquiry, to provide further informa tion, or to assist in any other way.

Thank you for your work.