Dear Education and Health Standing Committee,
Submission to Inquiry into Support for Autistic Children & Young People in Schools – In particular: Current support available for autistic students in WA schools.
Thank you for the opportunity to provide a submission to the Inquiry into Support for Autistic Children & Young people in Schools. This submission is from the point of view of an ADHD’er parent of a year 7 ADHD’er autistic child with Pathological Demand Avoidance (PDA) profile, and a year 11 ADHD’er child. My youngest child can no longer attend face to face school and is schooled at home, online.
I have 14-years’ experience navigating the WA education system. My experience consists of having my children in one catholic school, one non-mainstream school, one independent school, one online independent school, and two state schools. Some of them are located in metropolitan areas and some in regional areas. I also have experience in home-schooling. This is what I have learnt:
(1) Other neuro-divergent children can have similar needs to autistic children. This inquiry will leave out many children whose needs are also currently not supported if it is asking only about the support for autistic children. The current education system is designed for neuro-typical students to the detriment of many neuro-divergent children’s mental health.
(2) Neuro-divergent students, both diagnosed and undiagnosed, suffer in the current school system.
(3) The support the schools’ offer neuro-divergent students is insufficient, which is to the detriment of many students’ metal health and can lead to school refusal.
(4) As a consequence of an education system that does not take into consideration neuro-divergent students’ needs and for which the support offered is insufficient, many children in WA do not have access to a proper education, which is a basic human right.
(5) The pathway to a truly inclusive education system that helps rather than hurts neuro-divergent students can only come from education about neurodiversity. The pathway to true inclusion will need to be led by neuro-divergent parents, parents of neuro-divergent students and neuro divergent professionals e.g., teachers and psychologists.
- Other neuro-divergent children can have similar needs to autistic children. This inquiry will leave out many children whose needs are also currently not supported if it is asking only about the support for autistic children. The current education system is designed for neuro-typical students to the detriment of many neuro-divergent children’s mental health.
In all my 14 years of experience navigating the school system, I can assure you, school attendance, to a greater or lesser extent, has been a problem for both of my children as both of my children share behavioural features and needs for which there is a lack of understanding and therefore support. This is at odds with an education system that publicises its inclusivity. This is also at odds with the legal requirement that schools need to meet the Disability Standards for Education 2005 which was implemented to ensure that students with disability can access and participate in education on the same basis as students without disability.
Please, consider the following:
‘School refusal is a type of school attendance problem based on a student’s emotional
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distress at attending school’. ‘Students with autism spectrum disorders (ASD) and attention deficit/hyperactivity disorder (ADHD) are at higher risk of school refusal’1.
‘The idea that autism and ADHD are intrinsically entwined stems not just from their frequent co-occurrence, but from observations that they share behavioral features’, ‘both conditions can involve delays in language, heightened sensory responses, defiant behavior, problems with regulating emotions and difficulty with planning and with inhibiting behavior. Both also appear in childhood and are more often diagnosed in boys’2
My children’s school attendance difficulty comes from the way ‘inclusion’ and ‘support’ is understood in the education system. Inclusion in WA appears to mean maintaining a system designed for neuro-typical children, including the school’s building design, the way classes are taught, curriculum content and assessment. ‘Support’ in WA appears to be the provision of limited strategies to ‘fit’ diagnosed neuro-divergent students into the current system usually due to the advocacy of the child’s parent. Ideally the school system needs to be structured for both neuro typical and neuro-divergent students, diagnosed and undiagnosed, and then offer further ‘support’ for students with additional needs.
The kind of ‘inclusion’ that we have in WA does not seem to understand that neuro-divergent children, autistic children amongst others, suffer in an environment that has complete disregard for their intrinsic needs and in which they are obliged to spend at least 6 hours and 20 minutes per day 5 days a week, 38.5 weeks a year. This system is impacting negatively on neuro-divergent children whose mental health deteriorates the longer they attend.
- Neuro-divergent students, both diagnosed and undiagnosed, suffer in the current schooling system.
Neuro-divergent children suffer in the current schooling system for the many demands the schooling system puts on them:
The school environment forces these children to have constant social interactions (being around people) which is exhausting for many of them;
These children are required to be seated in class for long periods of time, even though standing or doing something else while listening is what they need to be able to focus. The effort to stay seated and focused is enormous and exhausting.
Brain breaks are not properly implemented and the removal of the breaks that are scheduled (morning tea/lunch break) are used as a way of punishment. I have witnessed teachers punishing ADHD (inattentive) children by keeping them in during lunch break because they had not finished the task in class for being distracted!
The design of school classrooms and buildings (e.g., light and sound) and uniforms are not sensory friendly. It is mentally and physically draining for many autistic children to spend all day under LED or fluorescent lights. It is also exhausting for them having to walk through
1 Parliament of Australia. Department of Parliamentary Services. Research Paper Series, 2022-2023. 19 April
- https://parlinfo.aph.gov.au/parlInfo/download/library/prspub/9124340/upload_binary/9124340.pdf 2 https://www.scientificamerican.com/article/decoding-the-overlap-between-autism-and-adhd/
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crowded spaces or process conversations in rooms with background noise. It is also exhausting for many of them having to wear clothes/shoes that can be irritating or even painful. This can lead to sensory overload which can halt their ability to cope;
The content of lessons and assignments are not often tailored to their interests and are not meaningful to them. Staying focused and following the class is then physically and mentally draining;
Questions in assignments, exams, tests and assessments are often provided without context, can be poorly worded, and do not take into consideration that these questions can be misinterpreted by neuro-divergent students who can understand things in a more literal or lateral way. This can lead to poor outcomes on exams/test which does not correlate to the effort they put in and adds to their sense of not meeting other people’s/society’s expectations of them;
ATAR Course assessments organised by The School Curriculum and Standard Authority (SCSA) do not take into consideration the difficulties and needs of neuro-divergent students. Please see explanation at the end of this letter;
Schools do not provide rooms/areas that are sensory friendly in which kids can be alone and have a safe space, in which they can self-regulate so they can go back to class and access learning when they are ready;
When a neuro-divergent student finishes the school day they can be completely physically and mentally exhausted. Then, they go home, and in the only time they have to recuperate energy so they can be ready for the following day, they are required to do homework;
Certain neuro-divergences like ADHD are not funded by the government, so there is no help for these children and their families.
- The support the schools’ offer neuro-divergent students is insufficient, which is to the detriment of many students’ metal health and can lead to school refusal.
As explained above in this letter, ‘inclusion’ means, giving neuro-divergent children accommodations to be able to fit an environment that is full of barriers, without removing the barriers.
Schools offer the following accommodations as ‘support’:
Having access to a school learning coordinator
Having access to an Individual Educational Plan (IEP). Easier to get one for autism but schools tend to be reticent with other neuro-divergences like ADHD.
Having access to an Education Assistant (EA) ‘to be shared’ in class but not every day and not always the same one. Note: EA’s are only assigned to the neuro-divergent students who are diagnosed and for which their neuro-diversity has funding.
The possibility to use light covers, sunglasses or a hat under fluorescent lights.
The possibility to use ear plugs or headphones in noisy environments.
The possibility to use chewies, fidgets and other sensory tools.
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The possibility to use weighted blankets or lap pads.
The possibility to take frequent movement breaks during the day, provided they are accompanied by an EA.
The possibility to go to the Library or student services area when in need of a break if they need to be ‘by themselves’ and do not want to be with an EA.
The possibility of having therapy service providers to come to school and have therapy during school hours.
However:
In some schools, the learning coordinator funding is for a part time position. For example, it is only available for two and a half days per week for a school of around 620 students.
An EA is the person the school relies on to support these children. However, there is no consistency with EA’s, which is a fundamental need for neuro-divergent children, as EA’s change depending on the day and class. Neuro-divergent students do not have access to an EA in every class nor even on every day. Furthermore, EA’s are not trained or knowledgeable about neuro-divergent student’s needs and how to support them.
Teachers and school leaders e.g., Principals, are not often trained on how to teach neuro divergent students.
School staff involved in the IEP’s are not well trained or knowledgeable about neuro diversity and the IEP’s are often not implemented. Furthermore, the parents that are key to give input to the children’s needs are not allowed to be involved in the school to understand how the school operates so they cannot advocate properly for their children’s needs.
An unintended result of a lot of the accommodations provided is that the student, ‘stands out’ in front of their peers. This is precisely what a lot of children are afraid of and want to avoid as they fear being bullied or teased, and even more so at certain ages. A lot of students do not ask for ‘support’ in order to not look different.
Students and teachers in general are not educated about neuro-diversity and many of them do not understand neuro-diversity and some misunderstand it. The lack of education about neuro-diversity leads to non-inclusivity and rejection of diversity.
The school does not offer a quiet (with no other people), sensory friendly, safe space in which these kids can self-regulate. Being with an EA or going to the Library or Student Services when in need of a break, is not exactly a break since it means there would always be social interaction and is not sensory friendly. The library often has full classes in attendance or is used by other children with study periods. Student Services tends to be a walk through area, as it needs to be near students.
If the student takes a needed break, they miss out on lesson-time, which results in an increased difficulty to keep up with subjects.
If therapy is done during school hours, the student misses out on lessons which then makes it difficult to keep up with the subjects missed.
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Due to the school and education system being designed without neuro-divergent students in mind and ‘support’ generally being insufficient, school often overwhelms the ability of neuro-divergent students to cope and causes burn outs and meltdowns, that eventually lead, for some of them, to a complete school refusal. This in the case of my youngest child.
In the case of neuro-divergent students (like my eldest child) that are still able to attend school, it will be a long journey struggling for equitable access to the curriculum and assessment and for the school to accommodate their needs. Usually with very poor outcomes and usually to the detriment of these students’ metal health. Many of these children do not finish school and, if they do, they do it without reaching their full potential. The accommodations that are provided are based on an individual’s year level and relies completely on the capacity of the parent to constantly advocate for the child against stigmas, prejudices, misinformation and lack of knowledge about neuro-divergence. Not many parents have the time and capacity to do so. School teachers change every year level, so every year there is a new struggle. In secondary school, there is a different teacher for every subject.
- As a consequence of an education system that does not take into consideration neuro-divergent students’ needs and for which the support offered is insufficient, many children in WA do not have access to a proper education, which is a basic human right.
Currently in WA there are many kids that do not have access to education e.g., autistic children with PDA profile, because they simply cannot attend a school that can accommodate or is appropriate for their needs. The demands that the current schooling system imposes on neuro-divergent children and the anxiety levels to which autistic children with the PDA profile can reach, makes it impossible for many of them to attend regular face to face school.
The School of Isolated and Distance Education (SIDE), for example, is the only state education school online that somewhat could help these children since it delivers education for students who, for different reasons, cannot attend classes in a regular school. Unfortunately, it has the following issues:
i. Accessibility is difficult because of its requirements: the child needs to be receiving ongoing counselling, treatment, or other appropriate intervention and, it must be referred by a psychologist which has to confirm the student is unable to attend regular school for at least 3 months. In the WA Health system, accessibility to therapy providers like psychologists is very difficult because they are scarce and expensive. This is even more difficult in regional WA.
ii. It is not appropriate or does not accommodate for their needs. During a conversation I had with SIDE, I was told:
SIDE is a mainstream school. It is like regular school but online.
The program is not a long-term alternative to regular schooling. Students need to be working towards reintegration back into a school or alternative program. The duration is from one Term up to a Semester. No more.
The amount of students in each year varies, could be between 4-5 to up to around 20 students and this number constantly changes because students can enrol any time of the year.
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Since SIDE does not have caps on numbers, and given the nature of the program, students are constantly changing.
There is not much space for the teachers to give the lessons online. They share the same space, so there could be two teachers talking to two different classes with the resultant background noise
There is no possibility for one-on-one lessons.
There is no time to build a relationship with the teacher.
The demands are the same as those of a mainstream school with no possibility to adapt.
The education of many autistic children with PDA profile relies completely on their parents and their parents’ capability (financial, time and teaching ability) to home school. This means that, most likely, one of the parents will not be able to work, with the multiple consequences that this entails. It will be even more difficult for a single parent or for parents that might suffer from the same conditions as their children.
Furthermore, when the parents of autistic children choose home schooling because there is no other alternative, the parent that registers with Home Education has to navigate, once again, a system in which the staff, who are moderators in charge of the evaluation of the learning program and outcomes, do not have any training in neuro-divergence and are not knowledgeable of the students needs.
- The pathway to a truly inclusive education system that helps rather than hurts neuro-divergent students can only come from education about neurodiversity. The pathway to true inclusion will need to be led by neuro-divergent parents, parents of neuro-divergent students and neuro divergent professionals e.g., teachers and psychologists.
Education about neuro-diversity has to encompass everybody involved in the education system. This includes people who make decisions at all the different levels, locations and parts of the education system to the students e.g., Ministers, the Education Department senior staff, the SCSA, the school principals and executive staff, the teachers, education assistants, as well as administration staff.
Neuro-divergent professionals e.g., psychologists and teachers, neuro-divergent parents and parents of neuro-divergent students would need to be included in school boards and task forces because they are the ones who can explain and advocate better for the needs of neuro-divergent students.
With the right education, the school would be able to support sensory and emotional regulation, provide curriculum adjustments adequate to neuro-divergent students and an environment that is suitable for neuro-divergent learning. All of this would benefit not only the neuro-divergent students, diagnosed and undiagnosed, but also every other student at school. It would be a more holistic approach to teaching and learning that gives space and inclusion to the many different styles of learning.
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The School Curriculum and Standards Authority’s handwriting skills assessment, as part of the English ATAR Course assessment, puts neuro-divergent children at an unfair disadvantage.
I would like to take the opportunity that this inquiry provides to raise my concerns about autistic children and other neuro-divergent students and their struggle for equitable access to the curriculum and assessments.
Particularly, I would like to raise my concern about the School Curriculum and Standard Authority (SCSA)’s requirement to assess (in this day and age) the skill of handwriting for the English ATAR Course, the course that leads to an ATAR ranking score to enter University. The fact that SCSA assesses handwriting skills means that all the ATAR exams are required to be done in handwriting. In particular, my concern is with the English subject, since it is compulsory.
Writing an English exam requires organisation of thoughts and planning a response, focusing on the chain of thoughts and maintaining the flow of writing. It also requires finding, holding and manipulating in your head the information you want to write together with the sequencing/structure of the text, the grammar, syntax, punctuation, spelling and word choice. All of which has an impact on the final mark of the assessment.
Many neuro-divergent students have difficulties in the brain’s executive functions, which is aggravated by having poor working memory, and makes writing and planning in an exam a much more difficult task than for students without disability. It requires them to put in significantly more effort, time and energy, often with poor outcomes.
Handwriting adds an extra level of complexity to an assessment and unfairly disadvantages these students as it precludes them from demonstrating their competency in the subject, especially English. This is because handwriting makes the task of reviewing and editing almost impossible to do within the time constraints of the exam. Their difficulties in memory and challenged fine motor skills, results in them struggling to write fast and clean. Reviewing and editing is already a tedious and difficult task for them, but particularly necessary because of their difficulties in planning and organisation skills. Due to this, it is very important that they have access to a laptop/computer or word processor to be able to be constantly revising and editing. This is not allowed in an ATAR course assessment, not even as a form of an adjustment to the assessment.
SCSA only recognises a physical impairment that severely impacts handwriting as a valid reason for allowing a student to write their exam with a computer. It does not take into consideration any neurological difficulties as the difficulty in planning and organisation such as in students with ADHD and severe depression, even though those difficulties are acknowledged in its Policy ‘Equitable Access to Assessment Policy’ (Appendix 1: Conditions and possible arrangements for assessments). Autistic kids with PDA profile are not recognised, so there are no considerations for them either.
Handwriting makes the task of editing an exam response very difficult for those students with planning and organisation difficulties, because they may need to make large changes to the structure of an essay, not just a word here or there. I understand that as per SCSA any ‘adjustments made to an assessment are designed to facilitate access rather than remove or reduce the requirement to demonstrate the skill being assessed by the examination’ and that for this, SCSA will not allow the use of computer in the exam to students with a disability that does not have physical impairment that severely impacts handwriting. However, one would question the need to assess the skill of handwriting just for the ATAR Course, when it puts many children at an unfair disadvantage to enter University and when the way curriculum content is taught increasingly relies on computers for assessment (especially now that OLNA and NAPLAN are offered online).
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