This week, the South Australian government announced the appointment of Emily Bourke as Deputy Minister for Autism. It is the first wallet of its type in Australia.
The appointment of a minister specifically responsible for autism issues is a defining moment. But it also raises questions about why a government has chosen to focus specifically on autism.
Read more: Therapy for babies with early signs of autism reduces chances of clinical diagnosis at age 3
Autism in Australia
Autism is diagnosed in people who exhibit differences in social communication, repetitive behaviors, intense or focused interests, and/or sensory differences.
Twenty years ago, autism was a relatively rare diagnosis, identified in about one in 2,000 people.
The turn of the 21st century has seen a surge in the number of people diagnosed with autism. Factors behind this increase included broader diagnostic criteria, greater autism awareness among parents and clinicians, and reduced stigma associated with the diagnosis.
An increase in the incidence of autism has been observed, and some estimates now place the prevalence of autism in Australia at one in 50 people – a 40-fold increase in 20 years.
Today, approximately 34% of all National Disability Insurance Scheme (NDIS) participants have a primary diagnosis of autism. This figure rises to 55% of NDIS participants under the age of 18.
Read more: It’s been 25 years since we redefined autism – here’s what we’ve learned
Governance and autism
People with autism can face significant barriers to learning, community participation and well-being, and often need support to maximize their quality of life. This may be due to a combination of developmental differences and societal factors, such as the lack of autism-friendly environments.
But the way Australian governments manage and deliver autism support services and funding is complex.
Support for people with autism can be provided within the health, disability and education systems – or a combination of these departments – which may have different responsibilities at the state, territory and federal levels. A child can be diagnosed within the state health services, then receive funding for clinical services through the NDIS, and also be supported through the state education system (through federal funding).
At first glance, this inter-jurisdictional approach seems sensible and beneficial: supporting people with autism is everyone’s business. A broad coalition of ministries can reinforce this message.
But in reality, autism issues can fall through the cracks, with systems uncertain about their areas of responsibility, creating gaps in the coordination of supports.
A minister for autism
The appointment of an autism minister in South Australia aims to address two major issues.
First, the South Australian government introduced a number of initiatives to support the growing number of children with autism. This includes investing in an autism “lead teacher” in public elementary schools. Additional investments for clinical health services such as speech therapists, occupational therapists, psychologists and additional counselors will strengthen support for children with autism in the community.
A recent paper in Autism Research showed that due to social isolation and limited variety of in-person social interactions, young Australian adults with autism exhibit different perceptual patterns when processing speech. They report spending 2.7 hours a week interacting with people outside their immediate circle of family and friends. This contrasts sharply with the 18.3 hours reported by people without autism. The investments outlined in South Australia’s announcement could address this imbalance.
Second, the minister responsible for autism will coordinate autism issues across government systems. In theory, this not only means that administrative matters will not fall through the cracks of different systems, but that the Minister will also be an advocate for autism at higher levels of government.
But what about the other conditions?
A question raised in response to this appointment is whether a particular group of people with disabilities needs a dedicated ministry. Does the focus on autism mean a reduced focus on other disabilities, which also need support?
While some portfolios such as finance, health and defense endure over time, others are chosen, added or removed based on the priorities and policies of the government in place. Other portfolios related to other health and disability groups may be added over time.
The selection of an Autism Minister signals to the community that autism is a current priority for the state government. The appointment does not mean that the portfolio will not change over time. Although the appointment focused on announcing support relating to children and families, it is important that the government broadens its scope to also include issues relating to adults with autism.
Read more: Most adults with autism can recognize facial emotions almost as well as those without
Does the SA Autism Minister provide a model?
Given the relatively high prevalence of autism and the administrative problems that have plagued autism support services for years, the appointment of a minister for autism should be welcomed.
However, this appointment must come with a warning. Autism is a neurodevelopmental diagnosis, and many other children with developmental challenges also need support. Going back to the NDIS figures quoted above, 45% of children receiving disability support through the NDIS do not have an autism diagnosis.
The appointment of an Autism Minister provides a wonderful opportunity to increase support and inclusion for all. This may well provide a model for how other state, territorial and federal governments can govern complex administrative structures to support a large community.
Appointment should not be used as a means to create a new administrative category that excludes support for others who need it.
To make it a positive date, it needs to add support to all rather than being a “reductive” approach to dealing with complex humanity. Finding this balance will require constant vigilance on the part of governments and advocates.