3.1
This chapter provides information on life outcomes for autistic people across a number of domains, including health, education, employment, housing, justice and social inclusion.
Overview
3.2
Numerous stakeholders submitted that autistic people experience worse life outcomes than other disability cohorts and vulnerable population groups. Key statistics highlighted for the committee included:
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; and
51 per cent of autistic people and their families feel socially isolated and 39 per cent feel unable to leave the house due to concerns about negative behaviours.
3.3
The reasons for these results are multifaceted and interwoven. As noted by some stakeholders, life outcomes for autistic people are influenced not only by the presence and magnitude of autism symptoms but also by co-occurring physical and psychiatric conditions, as well as socio-cultural factors and other stressors, such as poverty, unaccommodating environments, exclusion and discrimination.
3.4
Poor outcomes for autistic people are also cumulative. For example, a number of stakeholders reflected that poor educational experiences and high rates of school disengagement reduce post-school opportunities for further education, employment, and independent living. In turn, this can increase social exclusion and lead to, or exacerbate, feelings of poor self-worth and/or mental health conditions.
3.5
Overall, it appears that life outcomes are poorer for autistic people with concurrent medical conditions or disabilities, such as intellectual disability. There is also some evidence that outcomes may be worse for autistic people from disadvantaged groups such as those from low-socioeconomic backgrounds, those with low English proficiency, and those living in regional and remote Australia.
Health outcomes
3.6
It appears there are relatively few large-scale studies about health outcomes for autistic people. Some of the available studies acknowledge that further research is needed, while others highlight obstacles to conducting large-scale research, such as an inability to establish sufficient sample sizes and/or trace participants for an adequate period of time. Accordingly, the summary below relies heavily on a few key Australian and international studies—as do a number of submissions made to the inquiry.
Life expectancy
3.7
The available evidence indicates that life expectancy for autistic people is significantly lower than for the general population. For example, a report by the United Kingdom (UK) autism research charity, Autistica, found that autistic people die an average of 16 years earlier than the general population, while autistic people with concurrent intellectual disability die more than 30 years earlier. Similarly, a recent University of New South Wales (UNSW) study found that the overall mortality rate for autistic people was approximately twice that of the general population.
3.8
Although the reasons for lower life expectancy are not fully understood, much of the evidence indicates that co-occurring medical conditions and concurrent intellectual disability, rather than autism itself, are the cause of lower life expectancy for autistic people.
3.9
Diagnosis and treatment of physical illnesses can also be delayed or made more difficult by the presence of concurrent intellectual disability, difficulty with communication and social interaction, a need for stability and routine, and the insensitivity to pain and cold experienced by some autistic people.
3.10
In addition, it is likely that high rates of social exclusion and unemployment among autistic people also contribute to poorer health outcomes and lower life expectancy.
3.11
While all autistic people face an increased risk of premature mortality, the risk appears greatest for those with a concurrent intellectual disability. This aligns with the findings of the UNSW study which concluded that the high mortality rate for autistic people was driven primarily by concurrent intellectual disability. For autistic people without concurrent intellectual disability, the mortality rate appears to be similar to that of the general population.
3.12
However, other studies found an increased risk of death even for autistic people with low levels of intellectual disability. For example, while concluding that intellectual disability was the most influential factor in relation to mortality and autism, a Californian study found that individuals with no, or very low, levels of intellectual disability still had a higher standardised mortality rate than the general population.
Leading causes of mortality
3.13
While cancer and circulatory diseases were the most common causes of death in the general population, the NSW study found that for people on the autism spectrum, injury and poisoning (including accidents and self-harm) and nervous system and sense disorders (e.g. epilepsy) were the leading causes of death.
3.14
There findings are consistent with a 2016 Swedish study, which found that the most common cause of death for autistic people with a concurrent intellectual disability was epilepsy, while autistic people without concurrent intellectual disability were found to be at much higher risk of suicide. However, this study also noted that increased mortality of autistic people was 'not limited to certain causes of death, such as diseases of nervous system, but was elevated for all analysed categories' and argued that autism 'accounts for substantial health loss across the lifespan'.
Epilepsy
3.15
While epilepsy affects one per cent of the general population, it is thought to affect 20–40 per cent of autistic people and is more common in autistic people with severe intellectual disability or other neurological conditions. For example, the risk of epilepsy in autistic children with concurrent intellectual disability is 20 per cent (versus 8 per cent for autistic children without concurrent intellectual disability). For those with severe intellectual disability, the risk can be as high as 40 per cent.
3.16
Epilepsy in autistic people can also present differently from epilepsy in the general population—often appearing in adolescence and potentially being more resistant to treatment. Of all autistic people with a concurrent intellectual disability and epilepsy, half do not live to see their 40th birthday.
Suicide and mental health
3.17
Autistic people are more likely to attempt or die by suicide than other groups. For example, while autism affects only one percent of the population in the UK, up to 11 per cent of people who die by suicide in the UK may be autistic. In one recent Australian study of autistic people without intellectual disability, 66 per cent reported suicidal ideation and 35 per cent reported suicide plans or attempts—about five times higher than the general population.
3.18
This may reflect the high rate of co-occurring psychiatric conditions among autistic people, with between 69–79 per cent of autistic people experiencing at least one mental health condition during their life. It has also been suggested that autistic people may also lack 'protective factors', such as social networks, coping mechanisms, and overall life satisfaction, which could decrease the risk of suicide.
3.19
The committee heard that depression, anxiety disorders and/or obsessive-compulsive disorder are the most common mental health conditions experienced by autistic people, with anxiety and depressive disorders particularly common among autistic females and males at higher risk of suicide. Autistic mothers are also at a higher risk of experiencing pre- and post-natal depression than non-autistic mothers.
3.20
Stakeholders also observed that autistic people who identify as LGBTQIA are also more likely to experience mental health issues than the heteronormative population. It was suggested that the issues experienced by this group were magnified by the intersection of autism, mental health, gender and sexual identity.
3.21
However, participants also stressed that mental health problems are not inevitable for autistic people and instead can be the result of, or made worse by, discrimination and isolation. As an example, some submitters pointed to the mental health impacts of using masking behaviours in order to 'blend in'.
Education outcomes
School education
3.22
The most recent Australian Bureau of Statistics (ABS) data shows that, in 2018, the proportion of autistic students whose highest level of educational attainment was Year 10 or below was more than double that of those without disability. The proportion was similar for those whose highest attainment was Year 11 or 12 (Table 3.1).
Table 3.1: Highest level of education attainment by disability status
(per cent)
|
|
|
|
|
|
Year 10 or below
|
15.4
|
34.9
|
32.4
|
|
Year 11 or 12
|
21.7
|
14.7
|
43.2
|
|
Advanced diploma, diploma or certificate III/IV
|
28.1
|
29.4
|
17.9
|
|
Bachelor degree or higher
|
31.2
|
16.1
|
8.1
|
Source: Source: Australian Bureau of Statistics, Disability, Ageing and Carers, Australia: Summary of Findings (2018)
3.23
Poor school completion rates were attributed largely to educational restrictions, a lack of support and negative school experiences. Autistic students also experience higher rates of bullying, isolation and academic underachievement.
3.24
In relation to educational restrictions, the ABS reported that, in 2018, 92.3 per cent of autistic students had some form of educational restriction. Of these, a small number were unable to attend school because of their disability. Of the young autistic people attending school, two in five attended a special school (or a special class in a mainstream school) and 77.7 per cent experienced difficulties at their place of learning. The main problems reported were:
fitting in socially (59.8 per cent);
learning difficulties (55.3 per cent); and
communication difficulties (51.5 per cent).
Post-school education
3.25
As with school education, the ABS found that, in 2018, autistic people were less likely to complete post-school education than people without disability. They were also less likely to complete post-school education than people with disability (Table 3.1).
3.26
In addition, the committee heard that autistic school leavers who pursue post-school education are more likely to pursue vocational education than university studies and are also more likely to enrol in higher education on a part-time basis. Of those autistic individuals who do commence tertiary education, it is suggested that up to 25 per cent withdraw from their course before completion.
3.27
Stakeholders identified a number of factors that may contribute to poor tertiary education completion rate. For example, the Olga Tennison Autism Research Centre (OTARC) at La Trobe University identified the following issues thought to affect students' progress:
social-communication difficulties;
structure, routine and sensory sensitivities;
mental health, especially anxiety and depression;
fine motor skill difficulties; and
disability and academic support.
Employment outcomes
3.28
Numerous submissions highlighted the poor employment outcomes for autistic people in Australia. Stakeholder estimates of the number of unemployed autistic people ranged from around 46 000 to 80 000. It was also estimated that around 45 per cent of autistic people are living near, or in, poverty as a result of being unemployed.
3.29
According to the ABS, in 2018, the labour force participation for autistic people aged 15–64 years was 38 per cent (compared to 53.4 per cent of people with disability and 84.1 per cent of people without disability). The unemployment rate for autistic people was 34.1 per cent—more than three times the rate for people with disability (10.3 per cent) and almost eight times the rate of people without disability (4.6 per cent). This also appears to align with the 2015 ABS data which showed that 29 per cent of autistic people aged 15–64 were permanently unable to work.
3.30
A number of stakeholders also drew the committee's attention to the National Disability Insurance Agency (NDIA) report, Outcomes for participants with Autism Spectrum Disorder, which found that:
13.8 per cent of participants aged 15–24 had a paid job, which was slightly lower than the average (16.6 per cent) and also lower than participants with intellectual disability (16 percent) or Down Syndrome (17.1 per cent); and
25.7 per cent of participants aged over 25 had a paid job, which was slightly higher than the average (21.3 per cent) but lower than participants with intellectual disability (29.5 per cent) and Down Syndrome (32 per cent).
3.31
The NDIA also found that of those autistic participants who were employed only 49.3 per cent of those aged 15–24 and 35.1 per cent of those aged over 25 were in open employment at full award wages—the third and fourth lowest percentages respectively of all participants. For those aged 15–24, a further 13.2 per cent were in open employment but paid less than award wages and 26.4 per cent were working in an Australian Disability Enterprise. For those aged over 25, the figures were 12.6 per cent and 45.6 per cent respectively (Figure 3.1).
3.32
However, many National Disability Insurance Scheme (NDIS) participants not in paid employment would also like to work. According to the NDIA report, 61.5 per cent of autistic participants who didn't have a paid job (but would have liked one) had a work goal in their plan, which was equal to the average and higher than most other disabilities.
3.33
This appears to align with the results of an Australian Autism Alliance (the Autism Alliance) survey, which found that of those respondents not in paid employment, 59.4 per cent would like to work.
3.34
Stakeholders also identified underemployment of autistic people as a significant issue, with many autistic people working below their potential and capacity. This includes those employed in Australian Disability Enterprises, which can involve repetitive and low-paid work.
3.35
High levels of unemployment and underemployment mean a significant proportion of autistic people are reliant on their families and/or government funded services and benefits, such as income support payments. The committee heard that around 50 per cent of people with disability aged 15–24 years rely on income support payments (compared to 14 per cent of people without disability).
3.36
The committee heard that barriers to employment for autistic people ranged from low education attainment and limited work experience, social and communication difficulties, and sensory and executive function issues, through to anxiety with driving and accessing public transport, and difficulties managing life skills such as the need for a bank account and using an ATM.
3.37
A range of external factors that may contribute to poor employment outcomes for autistic Australians were also highlighted, including unsuitable recruitment processes, negative employer perceptions of autistic people, unaccommodating workplace environments, a lack of appropriate workplace supports (including support to transition into the workplace), discrimination and bullying, and a lack of understanding about autism across workplaces and Disability Employment Service providers.
Housing outcomes
3.38
While accurate data on housing outcomes for autistic people appear to be lacking, evidence provided to the committee suggests that autistic people struggle to find suitable and sustainable accommodation. As a result, it is thought that a large number of autistic adults remain in the family home until their parents' death. Research also suggests that autistic people are at higher risk of homelessness than the general population.
3.39
The committee heard that the difficulties experienced by autistic people relates primarily to a lack of appropriate, safe and affordable housing stock (particularly for those with more complex needs), discrimination in the private rental market, as well as the link between poor employment outcomes and the ability to access housing.
Justice outcomes
3.40
As with housing, there is limited data available on justice outcomes for autistic Australians. However, a number of submissions pointed to the overrepresentation of people with disability in prison and the barriers they experience in accessing justice services and interacting with the justice system.
3.41
Stakeholders suggested a number of reasons for the overrepresentation of autistic people in the justice system, including a lack of understanding of autism within the system, communication and social difficulties experienced by autistic people, as well as their tendency towards compliance, difficulty processing information, and anxiety arising from changes in routine, unfamiliar situations or sensory overload.
Social inclusion
3.42
The committee heard that autistic people and their families experience significant social isolation and discrimination. A survey by the Autism Alliance found that:
67.5 per cent of autistic adults and 73.4 per cent of parents/carers feel socially isolated;
61.2 per cent of autistic adults and 63.4 per cent of parents/carers have lost friends because of the way the friends have responded to their autism or the person they care for;
47.5 per cent of autistic adults and 60.1 per cent of parents/carers sometimes feel unable to leave the house because of the fear of negative reactions; and
41.4 per cent of autistic adults have experienced discrimination or stigma.
3.43
Using other measures of inclusion, some stakeholders cited research that found only 10 percent of autistic adults are in long-term sexual relationships or married, while 25 per cent reported only having a single friend. For NDIS participants, it was reported that 34 per cent of autistic people aged 15–24 years and 41 per cent of those aged over 25 reported having no friends other than family or paid staff.
3.44
Some of the factors contributing to low rates of social inclusion were autistic people's inherent challenges with communication and social engagement and the intersection with poor employment rates, a lack of community understanding of autism, limited opportunities to participate in the community and build social connections, unaccommodating built environments, reduced community mobility (such as access to transport), and low levels of independent living.