A mother's plea for her autistic son

Kathleen Murray

My then five-year-old son was diagnosed with autism spectrum disorder (ASD) around the time in 2007 the United Nations declared April 2 as World Autism Awareness Day (WAAD). He was on the cusp of school and I worried what the diagnosis meant for his future.

Each April 2 UN signatories and the international autism community try to raise awareness of this developmental condition. WAAD joined the competitive "cause awareness calendar". It's supported by a "Light it up Blue" global campaign. Recent years have seen some Victorian landmarks alight in support. Many politicians and high-profile leaders don "Blue Ribbons", talking about equal opportunity, before soon wearing another ribbon.

For those living with ASD, however, or those who love them, each day is about advocating for understanding and empowerment. While April 2 celebrates diversity, for many, including me, it's a sobering time to feel "blue" about ongoing ignorance and barriers. Ten years on I wonder what gains have or haven't occurred as they impact my son and others I know. My observations are informed by key reports, and years of advocacy and conversations.

The gains in areas of early diagnosis, intervention and allied health supports are evident. As too is the potential a properly funded National Disability Insurance Scheme could provide to improve inclusion, self-determination and participation in society. Matt Davidson

Illustration: Matt Davidson 

Public education, however, seems so stuck in a groundhog day moment it's difficult identifying meaningful advancement. The school experiences of many ASD students can involve jarring hardships. Shining a closer "blue" spotlight here is warranted; please consider:

• Poorer outcomes – sufficient inquiries and evidence indicates these students still suffer exclusion, and experience poorer educational, social and economic outcomes than their peers. 

• Ongoing discrimination – cases of school-based discrimination continue, occasionally hitting the media following formal complaint processes.  Examples include the dehumanising practice of restraint and seclusion, over-represented confirmed incidents of bullying, physical and sexual assault, and illegal arrangements around part-time school attendance to "manage" challenging behaviours.  

• Poor accountability – patchy adherence to related legislative and policy requirements occurs. Poor resourcing and accountability undermines the efficacy of individual learning plans, the timely access to student support services and the ability to track disability funding to educational outcomes.

• Inadequate funding model – ASD funding "eligibility" criteria remain narrow, despite legal disability status. Repeated nightmarish examples of ordeals families face in the public system are well documented. Some resort to desperate measures to demonise their child for eligibility under "severe behaviour disorder". Many continue missing out. The latest related government review failed to deliver significant reforms. Public school hopping, or hasty moves to Catholic or independent schools are highly disruptive and costly for those seeking a safe and inclusive school.

• Double whammy – added challenges accessing an equal curriculum exist if these students experience other social, cultural, physical, economic or geographic disadvantage.

The gaps between the Education Department's "Autism Friendly Learning" framework and classroom reality remain vast and profoundly damaging for many – including my gentle and anxious 15-year-old now seeking another school following bullying and a mandatory reported assault. Any parent raising concerns has often elicited dismissive comments from teachers along the lines of "but they were smiling when I saw them'', or "they caught a ball today, they're doing so well", or "they need to try harder and behave". This shows just how misunderstood are these children's educational needs.

School life is much harder for ASD children. I felt this talking to a mother whose autistic son just started prep at the local public school, 10 years since mine did. She sobbed recounting his traumatic first week, a typically exciting time for most children.

"You won't believe this," she composed herself, "(his) teacher found (him) twice curled up in a little ball hiding under a bench during lunchtime crying for me. I'm devastated. The teacher didn't know how long he'd been there or what to do." I was so sorry, and I really did believe it. My boy, equally overwhelmed and unsupported during prep, often shut down in fear like this. I felt like a war veteran relaying stories of others I've met whose school career started similarly.

This piece is not about me prescribing wishful systemic reforms. So many of us have relentlessly sought this via formal mechanisms. It's perhaps a tired mum's deep sigh that little has changed in public education for ASD students since 2007. Many of us repeat identical battles each year, while the war for equality still rages. It's also perhaps a call to action to the Education Minister James Merlino, who pledged to build "The Education State" for all students, to commit to lighting up his schools blue each year as acknowledgement ASD students deserve educational equity. 

Genuine awareness however must last longer than one day. I hope WAAD can soon be a greater celebration of achievements, rather than how much is still needed.

Kathleen Murray is a mother and public education activist. She was a member of the Victorian Equal Opportunity and Human Rights Commission's Disability Reference Group.

from http://www.theage.com.au/comment/a-mothe...