By REBEKAH DEVLIN
A National Autism Strategy co-designed with autistic people and the autism community is the centrepiece recommendation of a 400-plus page Senate Select Committee Inquiry into autism tabled in Federal Parliament.
The national strategy would address whole-of-life needs and focus on coordinating initiatives across all levels of government.
The Senate Select Committee report, which has been more than two years in the making, made 81 recommendations covering key areas such as diagnosis, education, health care, housing, social inclusion, advocacy, research, justice, rights, and of course, the NDIS.
“This has been a long time coming for the autism community and we’re hoping this will be a blueprint for real change,” said Australian Autism Alliance co-chair, Jenny Karavolos in an online briefing for the autism community today.
“This is the first time there has been such a broad ranging national inquiry into our lives,” added autistic advocate and mother of two autistic boys, Monique Blakemore.
Also part of the briefing were committee chair, Liberal Senator Hollie Hughes, and deputy chair, Labor Senator Carol Brown.
“This has never been done before and we’ve certainly never looked at the whole-of-life when it comes to the autistic experience, not only for those with autism themselves, but also their families and those that love them,” Senator Hughes said.
“We looked at this, not through the lens, which all too often happens, that this is an NDIS issue, but that this is an issue for every level of government and that the NDIS is just one part of that.”
The report said that life outcomes for autistic Australians are “unacceptably poor” citing “stark” statistics.
- Autistic people have a life expectancy more than 20 years shorter than the general population, with more than twice the mortality rate.
- Autistic people experience high rates of co-occurring mental health conditions and are more likely to attempt or commit suicide than other groups.
- Seventy-five per cent of autistic people do not complete more than a Year 12 education, while the unemployment rate for autistic people is almost eight times that of people without disability.
- Autistic people also appear to be overrepresented in the justice system and at higher risk of homelessness than the general population.
- Autistic people experience high rates of co-occurring mental health conditions and have a suicide rate nine times the general population.
- Inclusion of autistic people in the community is also poor, with many experiencing loneliness, isolation, exclusion and discrimination. Significant numbers of autistic people report having no friends other than family or paid staff.
- Likewise, many families say they feel unwelcome at community events, or unable to leave the house due to negative public reactions to their child’s autism.
“These are not simply statistics on a page. Behind each set of numbers are thousands of autistic children and adults who have been denied the opportunity to fulfil their potential and live healthy, safe and productive lives, as well as scores of families who have been pushed to breaking point,” the report said.
“During the course of the inquiry, the committee heard first-hand accounts of the devastating impact that inadequate or inappropriate support has on the lives of autistic people and their families. However, the committee does not believe these problems are insurmountable. Significant inroads could be made by improving service integration and access, increasing understanding of autism in both community and professional settings, encouraging the development of autism-specific and autism-friendly services, and building workforce capacity and capability.”
Senator Brown said regardless of the result at the upcoming federal election, the recommendations must be adopted to redress these inequities faced by the autistic community.
“It’s now where the hard work begins, the report cannot be the end, but the start,” Senator Brown said.
“What this inquiry has shown is that it is absolutely critical, the need is critical, autistic people are falling behind in nearly every area in this country.”
The Australian Autism Alliance has called on all Australians to put pressure on all levels of government to support the recommendations and bring about real and lasting change for the estimated 650,000 autistic Australians.
“We strongly welcome a National Autism Strategy and support the Committee’s acknowledgment that generic disability strategies have not improved outcomes for Autistic people. The previous way of delivering support to Autistic people, through siloed programs and one-off initiatives, has simply not worked. We also welcome co-design as an absolute must to enable effective and sustainable outcomes,” said Ms Karavolos.
“We finally have in front of us a plan to make a real difference for our future. We the autism and autistic communities must come together now and be a united voice to ensure that the recommendations of this report are implemented,” added Ms Blakemore.
The Autism Alliance recognises that implementing all recommendations will require a long-term commitment, and called for priority action on:
- Establishing a National Autism Strategy through co-design with Autistic people and the community with strong outcomes targets, reporting and accountability measures
- Developing a National Roadmap for improving health and mental health services for Autistic people – something also called for by the Disability Royal Commission
- Lifting Medicare rebates and removing the age cap for autism assessment and diagnosis together with initiatives to drive timely and quality assessments
- Jobs initiatives to shift the dial on employment for Autistic people
- Reforms to markedly increase inclusion and attainment in education and training
- A National Autism Workforce plan to build autism capability of key frontline workforces
We will have more responses to the report in the coming days.