Australia has, for the first time in history, launched a national autism strategy, an exciting step forward for the country’s autistic population. South Australia has made history by appointing the state’s first ever autism-specific minister to the state’s parliament. This new initiative represents a deeper recognition that the needs and concerns of autistic individuals and their families are at the core of this work. Around 290,000 Australians are on the autism spectrum. Advocacy groups argue the real figure may be far worse, highlighting the urgent, desperate need for wide-ranging and immediate support and resources.
The change of direction occurs against the backdrop of some deeply concerning narratives that have taken root around autism. These challenges are particularly exacerbated by actors such as former U.S. President Donald Trump. Trump fanned the flames in July when he tweeted about a possible link between autism and paracetamol use in pregnant women. He calls the condition an “epidemic” and suggests that it is shameful. Advocates are drawing alarm over these declarations. They contend that these narratives can have detrimental effects on the lives of those in the autistic community.
Challenges Faced by Autistic Individuals
Our research shows that autistic folks are struggling with their physical health and mental health. They suffer markedly reduced life expectancy, employment, and educational outcomes than the rest of society. Instead, advocates say the entire public conversation is about how to “cure” or “repair” autistic people instead of creating conditions that allow them to thrive on their own terms. That singular focus on problematizing autism makes people who are neurodivergent feel further isolated and like they do not belong in the world.
Jac den Houting, an advocate for the autistic community, highlighted the dangers of harmful representation of autism.
“We’re at risk of going back decades in the space of days.” – Jac den Houting
Den Houting expressed these narratives’ deeply troubling impact on individuals’ feelings of belonging. He emphasized the effects they have on the self-image of the people in that community.
“We’re already struggling… to feel like we belong and like we have value. This is the last thing the autistic community needs to be dealing with.” – Jac den Houting
The New Autism Strategy and Its Implications
To meet these needs, the Australian government’s new national autism strategy is designed to tackle all of these challenges. The plans would slowly move kids with “mild to moderate” autism and developmental delays off the National Disability Insurance Scheme (NDIS). Those funds will be shifted into an equally adventurous new initiative named Thriving Kids. This change is intended to address the increasing fiscal burden of the NDIS. Experts forecast these expenses will reach $52 billion this fiscal year.
Despite its noble intentions, this move has raised alarms among advocates who fear it may inadvertently create additional barriers for autistic children and their families. Heidi La Paglia, an autistic disability advocate, underscored the emotional burden these conversations impose on members of the community.
“A lot of individuals… are not only exhausted but really personally hurt when these kinds of statements come out because we’ve had to do so much work to, not only understand ourselves but also be accepting of our differences.” – Heidi La Paglia
La Paglia further noted that positioning autism as an issue that requires fixing would only serve to marginalize autistic people more.
“We’re very much being framed as this problem that needs to be fixed or solved rather than being talked about as people who just need support to be included in a world that wasn’t built for us, and as people who are proud of who we are.” – Heidi La Paglia
A Community on Edge
The autistic community in Australia is already grappling with various challenges, including anxiety over how recent government decisions will impact support services. Still, as Den Houting noted, conversations around prevention can be particularly insidious. This is especially the case for those who have labored long and hard for visibility and validation.
“In science and in medicine, generally if we are looking for the cause of something, it’s because we want to be able to prevent that something from happening in the future,” – Jac den Houting
Den Houting made a strong case that what most people in the community want isn’t prevention. Rather, they expect to be affirmed for who they are and what they need.
“The majority of the autistic community isn’t interested in being prevented. Our community, which we’ve worked so hard to develop and foster over the last few decades, the thought of that community just slowly ceasing to exist over time, it’s really quite heart-wrenching.” – Jac den Houting
