The Results for the Senate inquiry on Autism were released last week. On 27 November 2019, the Senate resolved to establish a Select Committee on Autism to inquire into and report on the services, support, and life outcomes for autistic people in Australia and the associated need for a National Autism Strategy.
Here is a summary of the findings.
Background
The most recent figures from Australian Bureau of Statistics (ABS) show that in 2018 there were 205,200 autistic individuals in Australia, a 25.1 per cent increase since 2015. However, the accuracy of the figures, were questioned by contributors. Suggesting the ABS have underestimated the true prevalence of autism in Australia. As an example, one submission cited a study that put the actual prevalence of autism in Australia at between 2.4 and 4.4 per cent of the population, or between 600 000 and 1 million people.
Co-Occurring conditions
Commonly co-occurring conditions include intellectual disability and developmental delays, language delay, motor difficulties, epilepsy, sleep problems, anxiety, depression, attention deficit hyperactivity disorder (ADHD), unusual eating behaviours, and gastrointestinal symptoms.49 ND Australia provided the following estimation of the rate of certain comorbidities:
- 30–40 per cent of autistic children have an intellectual disability or developmental delays.
- 60–70 per cent of autistic people have ADHD;
- 40–60 per cent of autistic children have anxiety.
- 20–30 per cent of autistic people have epilepsy.
- 4–5 per cent of autistic children have Tourette syndrome and another.
- 9–12 per cent have tics of some kind.
- 30 per cent of children with Cerebral Palsy are also autistic.
- 40 per cent of people with Down Syndrome are also autistic.
These co-diagnoses ‘profoundly affect’ how a person with autism functions.
Statistics and key Issues addressed in the report.
- Autistic people have a life expectancy 20–36 years shorter than the general population, with over two times the mortality rate;
- 75 per cent of autistic people do not complete education beyond year 12
- The unemployment rate for autistic people is almost eight times the rate of people without disability.
- 50–70 per cent of autistic people experience co-existing mental health conditions.
- 39 per cent feel unable to leave the house due to concerns about negative behaviours.
- 51 per cent of autistic people and their families feel socially isolated.
- 72.2 per cent of autistic students attended a mainstream school.
- Many autistic people need support to live independently. The type of support required can range from assistance with personal care, such as showering, eating and dressing, to assistance with home management, budgeting and paying bills.
- Autistic people report difficulties accessing legal advice and representation which is one factor resulting in an the overrepresentation of autistic people in the justice system.
Cost of Autism
In terms of the direct financial impact on families, a 2014 Australian study estimated that the median cost to families was $34 900 per annum (or $38 198 in 2020). The study also reported that cost of autism symptoms was cumulative—that is, each additional symptom added approximately $1400 per annum. However, given the limitations of the study, the committee is aware that the actual cost to families may be higher. Indeed, some families provided evidence to the inquiry of significantly higher costs
National Autism Strategy
The majority of inquiry contributors were strongly in favour of a National Autism Strategy and highlighted its potential to make a meaningful difference to autistic people’s lives.
Evidence presented to the committee suggests that support for a National Autism Strategy is driven by:
- The prevalence of autism and the lifelong nature of the condition.
- The poor life outcomes experienced by autistic people, even in comparison to other vulnerable groups.
- The failure of the current approaches to supporting autistic people.
- The introduction of similar strategies overseas.
Demographics.
The report addresses the misconception of Autism only being a childhood conditions, along with better providing and identifying supports for autistic women and Autistic mothers. Along with evidence that autistic individuals from disadvantaged and vulnerable cohorts can face worse life outcomes than the broader autistic population.
Diagnosis.
The report acknowledges the difficulty in obtaining a diagnosis. The median wait time for an assessment in the public system is 16 weeks (within a range of 2–108 weeks). Other submitters suggested that waiting periods could be even longer. For instance, Monash University contended that children wait a minimum of six months—but typically longer—for a formal assessment. In addition, the Australian Medical Association (AMA) reported that a survey of parents and carers revealed that 34 per cent waited over a year for a diagnosis, and almost 20 per cent waited for more than two years.
Barriers.
The report identified several barriers to effective early intervention. These included delays in diagnosis and the lack of availability of clinicians with appropriate expertise, as well as access to appropriate services and supports. Together, these barriers often lead to inconsistencies in experiences and outcomes for many autistic children and young people. It was also reported significant delays in obtaining an autism diagnosis often undermined opportunities for many children to benefit from appropriate early intervention.
Read the Full Report here. Join the webinar here. Come and hear from Senators Hollie Hughes (Committee Chair) and Carol Brown (Deputy Chair) about what is in the final report and what the next steps will be for making the changes that Autistic people so desperately need.