Autism and Advocacy

ACN speaks to Laura Cottam from the Australian Centre for Disability Law  on how to advocate for your autistic child at school

If you’re a parent with a school-aged child on the spectrum, there’s a good chance you’ve encountered problems  at some point with the education system.  The Disability Royal Commission (DRC) has heard a disturbing number of reports about the barriers students with disability face trying to access education.  These range from gatekeeping and partial enrolment to restrictive practices, exclusions from school activities, and suspension and exclusions from school itself. 

Whilst these obstacles have been experienced by students throughout the disability community, children with autism were specifically mentioned in the DRC’s first issues response paper on education. In it, the Commission noted it had received reports that: “bullying is a prevalent and serious issue for autistic students, who report significantly more victimisation (physical, verbal and social) than their peers without autism.”  

The Commission went on to say, “we were told of the trauma experienced by children and young people with disability following violence, abuse or neglect and how it may lead to significant mental health impacts.”

An Amaze study in 2018 found that 97% of autistic students surveyed encountered restrictions at school, and more than half felt they had been treated unfairly by the system.  A third didn’t make to Year 10 or beyond, which may go some way to explaining why autistic people are six times more likely to be unemployed than people without autism.   

While these figures are sobering, there is recognition within most state education systems that more needs to be done to successfully engage autistic students, primarily through upskilling staff and better resourcing schools.  This kind of systemic change takes time however, and students on the spectrum continue to face obstacles.  It’s prompted the Australian Centre for Disability Law (ACDL) to put together a guide to help students and families navigate the system and advocate more effectively.  I spoke to Laura Cottam from the ACDL about this toolkit, called Learning Together.  In a quick Q&A, she outlines the extent of issues families are facing.

Laura: The Australian Centre for Disability Law advises people with disability in NSW on issues relating to discrimination in areas of public life.  We noticed that almost 40% of our work related to education – with students (at school, TAFE and university) frequently not getting the adjustments and support they needed, and not being aware of their legal rights and complaint options.
We also realised that, while there are lots of great resources on advocacy skills out there, and some on the legal options, there appeared to be a gap of a resource that brought all the information together in one place.  We discovered that people needed a guide with information about their rights to ask for adjustments in education, tips on how to work with your education provider and legal information about options if things don’t work out.  We got funding through the NDIA’s Individual Capacity Building program to develop the toolkit (in English as well as accessible versions), provide training on the toolkit and then also work with CALD communities to provide translations and training.  The Learning Together toolkit is part of a three-year project to help students access the education they need.

What are the main issues you deal with regard to accessing education for children with disability?

Laura: We see a range of issues for students with disability at all points of education. It often starts with gatekeeping, where children are excluded from enrolling in early education or schools due to the views of the school that it would be ‘too hard’ to accommodate their disability.
Once a child is at school, ensuring the adjustments they need are clear and understood, as well as supported, funded and implemented can be a regular battle.  Often, the level of support depends on the willingness of the individual teacher, school or principal to engage and actively work with families to provide what a child needs to succeed.
Each student has different needs, and while changes to the curriculum or physical environment to support their learning is paramount, there is also often a focus on reactive behavioural management and discipline of children rather than proactive support for regulation and engagement, particularly for those with more invisible disabilities.
In later school years, we see situations in which adjustments for assessments and exams that have been implemented throughout schooling are not allowed for the final HSC exams as NESA applies different criteria, therefore students and families have to spend months trying to justify the support that they need to succeed in exams. We also advise a number of students at TAFE or university who struggle to receive the necessary supports and adjustments for their ongoing learning due to bureaucracy and inflexibility of courses.

What should parents do if problems arise with their child’s school?

Laura: Firstly, look at Learning Together for tips as Part Four in particular focuses on communication and what to do when specific issues arise.  Consider whether it is something isolated that can be handled with a short email or is it something larger that requires a meeting with additional stakeholders such as occupational therapists or other support people.  Sometimes a discussion with all parties can clear the air and work towards an effective solution.  Whatever the case, everyone needs to approach problems and solutions with a positive and respectful attitude, which can be hard to do when emotions may run high on both sides.  We suggest that things are always documented (such as minutes of meetings, emails, letters) and followed up in writing with the appropriate people to ensure that everyone is on the same page about what has been agreed going forward.

How would you like to see the education system change to better support students with disability?

Laura: A focus on inclusion as a starting point, which will require a change to how teachers, principals and the Department view the curriculum and how it should be developed to include those with disabilities as a proactive measure, rather than requiring students with disability to request adjustments and amendments that may not be funded, supported or understood.  At the moment, a lot can depend on an individual teacher or school as to whether a student with a disability has a positive or negative experience despite broader department policies of ‘inclusion’, and too many children with disability find themselves having to change schools because they do not get the support they need. So, an increased focus on the way in which the policies are actually implemented on the ground would be great. 

What’s your top tip for parents with a school-aged child with disability?

Laura: Be proactive from the start about working with the school to discuss what support your child needs and how they are going to work with you to provide it, and how best to communicate with them on an ongoing basis.