A year ago, I attended an assessment for a diagnosis of autism. My language and communication, social interactions and behaviours were evaluated with a psychologist. But the process required two assessors, and as one was absent that day the assessment, the process remained incomplete. I had not realised that when I arrived, nor had it been explained that the result would be delayed. The confusion I felt on that day of my assessment was a result of a simple miscommunication, rectified with another appointment a week later, and culminating in a later-in-life diagnosis of autism. But I walked from that incomplete assessment with a familiar feeling of shame.
I have thought back to that process as I worked through the consultation process for the federal government’s National Autism Strategy and ask the same question about the National Autism Strategy that I did about my assessment: whose responsibility was it to communicate this?
The process involved months of consultation with the autism community — autistic people and their families, carers, advocates and researchers. And on the back of that consultation, the draft strategy has now arrived. But increasingly I meet autistic people who were not given the opportunity to contribute. Many don’t know it exists.
The National Autism Strategy is the first coordinated national approach designed to support autistic people at each stage of life. The draft presents a statement on neurodiversity, a term used to ‘describe the natural range of diversity that exists in human neurodevelopment’, noting that ‘although all people process the world differently, some differences are grouped and named’. Autism is one such form of neurodivergence, and autistic people face many challenges living in a society that is largely structured for its neurotypical members.
Autistic people are more likely to have chronic illness and mental health conditions, to be homeless, victims of sexual assault, unemployed, to encounter the justice system and to receive longer sentences if they do. Autistic people have a life expectancy 20 years below the general population, with suicide the leading cause of premature death.
The draft strategy has identified four key areas — social inclusion, economic inclusion, diagnosis, and health and mental health — and proposes 24 commitments across these areas. Autistic community leaders, experts, and advocates have celebrated the draft strategy as an important moment but also voiced concerns. Some have said that the strategy is strong on motherhood statements but lacking concrete solutions. Others have argued it is a comprehensive list of long-known problems, some of which depend on all levels of government cooperating to achieve solutions. Experts have pointed out that it doesn’t address needs like safe housing, the justice system, early childhood education and aged care.
The consultation has been guided by a predominantly autistic oversight council with an autistic co-chair, so the disconnect is more likely reflective of the process than the people. A government consultation still operates on an entirely neurotypical, bureaucratic framework, and not all autistic people can participate in that type of space.
'By integrating more autistic voices into these points of disconnection, we can dismantle the silence that has long shrouded our experiences. That familiar feeling of shame can be transformed into an open door, inviting empathy and understanding.'
I spoke with an autistic friend who did not participate in the consultation. I asked why. He doesn’t trust the government to execute it properly and have been ignored previously in similar processes. He said he didn’t believe he would be heard. And when autistic people aren’t heard in a conversation, their needs go unmet.
This disconnect between autistic and non-autistic culture and communication is a working example of what autistic academic Dr Damian Milton calls the ‘double empathy problem’. He notes that autistic differences lead to different life experiences; because autistic people experience the world differently, they communicate and interact with others differently: ‘Just as it could be said that autistic people lack “social insight” into non-autistic culture and communication, it could also be said that non-autistic people lack “social insight” into autistic culture and communication.’
This disconnect makes it challenging for the autistic community to fully participate in processes developed within a neurotypical framework, and compromises the creation of solutions and resources that support a more informed society and enable autistic people to thrive. The National Autism Strategy is an important start to a wider discussion about autism, but we are not having a fully inclusive conversation yet. I sense an echo of that familiar silence and shame again.
The draft strategy’s lack of conclusions has provoked some frustration. It acknowledges the many problems autistic people face but does not begin to identify solutions. As one autistic person put it, we now have 50 pages of jargon listing the problems we live with, that we can die with, but offering no solutions. Admittedly, the next phase of the process is to develop action plans, but the draft presents as a strategy without tactics.
I drove across town to hear from the minister and facilitators overseeing the strategy. They outlined how extensive the consultation has been, how they heard from 2000 autistic people and carers, from 100 targeted groups. This was a neurotypical process and there may be a disconnect, they explained, but they were trying.
I’ve reached out to autistic friends, parents, faith leaders, and business owners for their opinions. Too many were unaware of the strategy, or overwhelmed by the consultation process. I asked each of them: if a national autism strategy could deliver you three things, what would they be? Faster, more affordable assessments. A rebate on more psychologist appointments. Anti-discrimination laws. Driving instruction. Increased disability pension. Social housing. Emergency departments trained to manage autistic people who are suicidal.
I included these voices in a submission to the current consultation process. Every answer focused on a practical solution, each one something autistic people need to survive.
A week after my incomplete appointment, I returned for my second assessment. I approached the front step of the clinic and tried the front door. It didn’t open. I stepped back, checked, pushed again. Nothing. I waited in the quiet, about to give up, when a knocking on the glass startled me. A girl was on the other side. She pointed to a second door handle I had not seen. The door opened.
‘Why are you here?’ the girl asked as I stepped into the reception area. ‘Autism diagnosis,’ I said. ‘Oh,’ she beamed. ‘I’m autistic too.’ Then she slipped through the half-open door and was gone. I was ushered down the hall for my second assessment, where I finally received my diagnosis: I am autistic.
Autistic people don’t just need a strategy, they need a safety net. The National Autism Strategy is a good start, but unless more autistic people are truly heard we won’t arrive at the practical solutions they need to survive. I still wonder about that day, what would have happened if there hadn’t been another autistic person there, a child to show me the way? Would I have given up?
A peak body, Australian Autism Alliance, will help co-design the next steps of the process, with the first action plan available at the year’s end. While the consultation may feel incomplete, the conversation can continue. Peer advocacy is not a silver bullet, but it can help. By integrating more autistic voices into these points of disconnection, we can dismantle the silence that has long shrouded our experiences. That familiar feeling of shame can be transformed into an open door, inviting empathy and understanding.
Anthony Castle is a writer living on Kaurna land, Adelaide.