The Australian Bureau of Statistics (ABS) conducts its Survey of Disability Ageing and Carers about every 3 years. The SDAC report summaries on autism are available here (2012 data) and here (2009 data). The ABS's reporting on autism is included in the main ABS webpage for the 2015 data collection (link here). The reports include subsections on:
- autism prevalence ... both nationally and by state
- education participation and outcomes
- labour force participation
- the level of disability that autistic people experience, their need for assitance and the assistance they receive
The observations show abysmal outcomes for autistic people. These unnecessarily inequitable outcomes would be avoided or reduced if services appropriate for autistic people were available ... but governments at both the federal and state/territory level refuse to recognise that autistic people have distinct needs, needs that are different from the needs of people with disabilities that are more obvious/visible or better understood.
The report on data the that ABS collected in 2015 says:
- "The 2015 SDAC estimated higher prevalence rates among children and younger people, but much lower rates among older people".
- "In 2015 there were 164,000 Australians with autism, a 42.1% increase from the 115,400 with the condition in 2012."
- "Autism spectrum disorders are more commonly found in males than females. In 2015, males were 4.1 times more likely than females to have the condition, with prevalence rates of 1.1% and 0.3% respectively. This is consistent with estimates from other countries."
- "There is variation in the prevalence of autism across age groups, with a marked drop off commencing in the late teens. Data are not presented in any detail for people aged over 40 years because the identified prevalence rates are too low for reliable estimates to be produced. "
- "Young people (aged 5 to 20 years) with autism may need a high level of support to participate in their education. In 2015, over half (55.8%) of young people with autism needed special tuition and 41.8% needed help from a counsellor or disability support person, while 20.7% didn’t receive any additional assistance (excluding attending a special school or special classes in a mainstream school)." and "More than two out of five (44.1%) children indicated they needed more support or assistance at school then they were receiving."
- "The labour force participation rate was 40.8% among the 75,200 people of working age (15-64 years), living with autism spectrum disorders. This is compared with 53.4% of working age people with disability and 83.2% of people without disability."
- "Among people with autism, 64.8% reported having a profound or severe core activity limitation, that is, they need help or supervision with at least one of the following three activities: communication, self-care and mobility."
- "About two in five people (41.6%) needed assistance with cognitive and emotional tasks at least once a day, while three in ten needed assistance with self-care (29.9%), mobility (30.2%), and communication (30.5%)."
- "many people with autism who required assistance did not receive some or all of the assistance they needed, with over half (56.8%) indicating they needed more help with at least one activity. The need for more assistance with the core activities of communication (39.1%), mobility (22.7%), and self-care (16.2%) are particularly noteworthy given the intensity of the support that can be associated with these activities."
The 2012 report says:
- "The 2012 SDAC showed an estimated 115,400 Australians (0.5%) had autism. This was an 79% increase on the 64,400 people estimated to have the condition in 2009." Prevalence varies enormously with age: "There was considerable variation in the prevalence of autism across age groups, with a marked drop off in prevalence after peaking in the 5 to 9 years age group".
- "It is unlikely however, that people are being diagnosed with other conditions instead of autism as there is no correlating increase in other conditions in the SDAC data that would suggest alternative diagnoses (e.g. other developmental disorders, mental retardation/intellectual disability) in these late teenage years."
- "The prevalence of autism by state or territory of usual residence varied slightly, ranging from 0.30% in the Australian Capital Territory to 0.72% in Victoria."
- "Of people with autism who had finished school, 81% had not completed a post-school qualification."
- "In 2012, the labour force participation rate for people with autism was 42%. This compares with 53% labour force participation rate for people with disabilities and 83% for people without disabilities."
- "Of people with autism, 73% reported having a profound or severe core activity limitation ..."
- "27,100 people with autism who reported needing more help with communication (understanding or being understood by others) and 48,100 needing more help with cognitive or emotional tasks (managing their emotions and/or behaviour)" and "The bulk of care was provided by informal carers (relatives or friends), ..."
Specific observations from the 2009 data are:
- in 2009, "an estimated 64,600 Australians had autism. This is an increase of 34,200 from the 2003 SDAC, or more than double the prevalence identified in 2003." and "females made up only 18% of the reported cases".
- most reported cases of autism/ASD in Australia are under 25 years of age ... "Almost three quarters of people with autism in the SDAC were aged 5-18 years - the age at which they are attending school.".
- "12% of children with autism attended school and did not experience any educational restrictions. Of the remaining 88% who did experience some restrictions, 3% of children were not able to attend school because of their disability and 47% needed to attend either a special class in a mainstream school, or a special school."
- "For children with autism who were attending school, 82% reported ‘having difficulty’ at school, the majority of whom had difficulty with communication, learning and fitting in socially"
- "Children with autism need a high level of support to attend school, with 41% needing a counsellor or disability support person and 51% requiring special tuition. Of those children with autism attending school, 24% did not receive any additional support (excluding attending a special school or attending special classes in mainstream schools)."
- "Data from the SDAC suggests the difficulties experienced in the education system continue after school. Of people with autism who had finished school, 77% had not completed a post-school qualification. This is well above the rate for both the rest of the population with disability and people with no disability"
- "the labour force participation rate for people with autism was 34%. This compares with 54% labour force participation rate for people with disabilities and 83% for people without disabilities."
- "The National Disability Strategy notes 'Employment contributes to mental health, personal well being and a sense of identity'. These are issues people with autism may be struggling with because of their condition anyway, with lower labour force participation potentially making it worse."
- "Of people with autism, 74% reported having a profound or severe core activity limitation (that is, they need help or supervision with at least one of the following three activities - mobility, communication or self-care)."
- "People with autism needed assistance with a range of activities, with the highest needs in the area of cognitive and emotional tasks and communication. This is consistent with the core restrictions evident in many people with autism spectrum disorders."
- "many people with autism did not" receive "as much assistance as they needed". "The need for more assistance in the core activities of mobility, communication and self-care are particularly noteworthy". "This means there were 15,400 people with autism needing more help with communication (understanding or being understood by others) and 22,600 needing more help with cognitive or emotional tasks (managing their emotions and/or behaviour)."
Prevalence data from the ABS SDAC surveys from 1998 and 2003 are published in a paper in the proceedings of the 2004 Australian Biennial Autism Conference.
Getting politicians and bureaucrats to recognise and address the needs of autistic people is a major challenge for ASD and disability advocates. Autistic people will continue to experience these disgraceful outcome while Ministers, Parliamentary Secretaries and the bureaucrats that they direct ignore the distinct needs of autistic people.