4430.0 - Disability, Ageing and Carers, Australia: Summary of Findings, 2018 Quality Declaration 
Latest ISSUE Released at 11:30 AM (CANBERRA TIME) 29/11/2019   
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Autism in Australia

In 2018:

  • there were 205,200 Australians with autism, a 25.1% increase from the 164,000 with the condition in 2015.
  • males were 3.5 times more likely than females to have the condition, with prevalence rates of 1.3% and 0.4% respectively.


What is autism?

Autism is a developmental disorder which affects how a person communicates and relates to other people. It is a lifelong condition (Endnote 1). Autism can be characterised by difficulty in social communication; difficulty in social interaction; and restricted or repetitive behaviours and interests (Endnote 2).

Autism may present substantial challenges for those affected, their families and friends. As noted above, the condition is lifelong, although the social, communication and sensory deficits that some experience may be remediated with the use of intervention therapies and structured support. Autism spectrum disorders are diagnosed on the basis of behavioural and developmental criteria (Endnote 3).

This article uses results from the 2018 Survey of Disability, Ageing and Carers (SDAC) to present an updated analysis of the prevalence of autism in Australia, and the impact the condition has on the everyday lives of those affected by the condition.

Throughout the article, ‘autism’ and ‘autism spectrum disorders’ are used to denote conditions including autism spectrum disorder, Asperger’s Syndrome, Pervasive Developmental Disorder – Not Otherwise Specified, Rett Syndrome and Childhood Disintegrative Disorder. Descriptions of these disorders can be found in the Diagnostics and Statistics Manual of Mental Disorders (DSM) IV-TR and the DSM 5.


Does prevalence change with age?

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.


Prevalence of autism, by age – 2015 and 2018
Graph shows the prevalence of autism by age group for 2015 and 2018 with a peak in the early age groups, and a marked drop off commencing in the late teens.
Source(s): ABS Survey of Disability, Ageing and Carers: Summary of Findings 2018


There are several possible reasons for the variation in autism prevalence across the lifespan between the 2015 and 2018 SDACs. These reasons are explored in the ‘Understanding autism prevalence’ section of this article.


Autism and education

School is an important social environment where children learn to interact with their peers, a task people with autism may find difficult. An appropriate school environment can provide opportunities to develop important social and life skills. Many children on the autism spectrum struggle socially, needing additional support throughout their education.

In 2018, 92.3% of young people (101,900) aged 5 to 20 years on the autism spectrum attending school had some form of educational restriction (92.3%), including a small number who were unable to attend school because of their disability. Two in five (40.8%) of the children attended a special class in a mainstream school or a special school.

Of the 106,600 young people (aged 5 to 20 years) with autism who were attending school or another educational institution, 77.7% reported experiencing difficulty at their place of learning. Of those experiencing difficulties, the main problems encountered were fitting in socially (59.8%), learning difficulties (55.3%) and communication difficulties (51.5%).


Persons aged 5 to 20 years with autism who are attending school or educational institution, by type of difficulty (a), 2018
Graph shows that people with autism who were attending school most commonly had difficulties with fitting in socially (59.7%), followed by learning difficulties (55.3%) and communication difficulties (51.5%).
Footnote(s):
(a) Living in households
Source(s): ABS Survey of Disability, Ageing and Carers: Summary of Findings 2018


Young people (aged 5 to 20 years) with autism may need a high level of support to participate in their education. In 2018, two in five (40.4%) young people with autism needed special tuition and 32.0% needed help from a counsellor or disability support person, while more than one in four (28.5%) did not receive any additional assistance (excluding attending a special school or special classes in a mainstream school).

Almost half the young people with autism aged 5 to 20 years (45.9%) indicated they needed more support or assistance at school then they were receiving.

People with autism are less likely than others to complete an educational qualification beyond school and have needs for support that differ from people with other disabilities. Of those with autism, 8.1% had a bachelor degree or higher, compared with 16.1% of those with a disability and 31.2% of those without disability. All people with disability and those with no disability were also more likely to have an Advanced Diploma, Diploma or Certificate III or IV than people with autism.


Highest level of educational attainment by whether has autism, has a disability or does not have a disability(a), 2018
Graph shows that in people with autism were less likely to complete an educational qualification beyond school compared with people with other disability, and no disability.
Footnote(s):
(a) Living in households
Source(s): ABS Survey of Disability, Ageing and Carers: Summary of Findings 2018


Autism and work

Participation in the workforce is important for social inclusion and economic independence, but people with autism spectrum disorders may encounter barriers to entering the labour market.

The labour force participation rate was 38.0% among the 94,600 people of working age (15-64 years), living with autism spectrum disorders. This is compared with 53.4% of all working age people with disability and 84.1% of people without disability.

The unemployment rate for people with autism spectrum disorders was 34.1%, more than three times the rate for people with disability (10.3%) and almost eight times the rate of people without disability (4.6%).


Severity of disability

In 2018, among all people with autism, 68.9% (141,400) 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.

Almost half (44.1%) of all people with autism had a profound or severe communication restriction. This indicates they needed assistance at least some of the time to understand or be understood by others, for example they may communicate more effectively using sign language or other forms of non-verbal communication.

Similarly, one in two (50.9%) of all people with autism had a profound or severe mobility restriction, indicating that they needed help or supervision to move around.

Just over one third (36.0%) of all people with autism had a profound or severe self-care limitation, indicating they need support or supervision with dressing, bathing, eating or toileting.


What assistance with everyday activities do people with autism need?

People with autism may need assistance with a range of activities, with the highest level of need being in the areas of cognitive and emotional support and mobility.


All persons with autism, by activities with which assistance is needed, 2018
Graph shows that people with autism most commonly require assistance with cognitive or emotional tasks (73.3%), mobility (51.8%) and communication (42.3).
Source(s): ABS Survey of Disability, Ageing and Carers: Summary of Findings 2018



Additionally, the frequency with which people with autism needed assistance was high, with 125,200 (61.0%) needing assistance with at least one activity on a daily basis. About two in five people (39.2%) needed assistance with cognitive and emotional tasks at least once a day, while three in ten needed assistance with self-care (30.9%) and mobility (33.2%). For a description of what tasks are included in each of these activities, please see the Glossary.


All persons with autism, activity needing assistance with, by frequency of assistance needed, 2018
Graph shows that two in five people with autism needed assistance with cognitive and emotional tasks at least once a day.
Source(s): ABS Survey of Disability, Ageing and Carers: Summary of Findings 2018


What assistance with everyday activities do people with autism receive?

People with autism may receive assistance from a range of providers depending on their needs.

Notably, the bulk of care was provided by informal carers (relatives or friends), in the core activity areas of self-care, mobility and communication. The graph below shows the proportion of all people with autism who received assistance with at least one of the core activities by the source of that assistance.


All persons with autism(a), by provider of assistance, by activity assistance provided for, 2018.
Graph shows that in 2018 people with autism who needed help with communication, mobility and self-care tasks were more likely to receive assistance from an informal provider rather than a formal provider.
Footnote(s):
(a) Living in households
Source(s): ABS Survey of Disability, Ageing and Carers: Summary of Findings 2018


Unmet need for assistance

The 2018 SDAC found that of the people with autism who required assistance (170,100) many did not receive some or all of the assistance they needed, with over half (51.7%) indicating they needed more help with at least one activity. The unmet need for assistance was highest for cognitive and emotional support (61,000 people), communication (30,100) and mobility (21,700).


All persons with autism with unmet need for assistance, by activity where more assistance is required, 2018
Graph shows that around four in ten people with autism needed more help with cognitive or emotional tasks than they were currently receiving.
Source(s): ABS Survey of Disability, Ageing and Carers: Summary of Findings 2018


Understanding autism prevalence

This section examines factors which may have influenced the number of people identified as having autism between the 2015 and 2018 SDAC, and the changes in estimated prevalence of autism across age groups.


Why does autism prevalence change with age?

As noted above, the 2018 SDAC estimated there were 205,200 people with autism, 25.1% more that the number estimated in the 2015 SDAC (164,000).

The 2018 SDAC estimated higher prevalence rates among children and younger people, but much lower rates among older people (see the first graph). This pattern of incidence by age group mirrors that recorded by the 2015 SDAC, indicating that for both surveys there were age-related factors influencing identification of people with these conditions.


Has the way in which autism is diagnosed changed over time?

The criteria used to clinically diagnose autism have been subject to some variation over time and this may have impacted the reported prevalence of autism in Australia. One of the key tools used as the basis for clinically diagnosing autism is the DSM as it describes diagnostic criteria clinicians can use in determining which mental and behavioural disorders people might have.

Changes to the DSM over time that relate to autism have been significant. The first two versions of the DSM (DSM (I) and DSM (II)) indicated that children with behaviours and/or characteristics symptomatic of autism should be classified as having ‘childhood schizophrenia’.

Diagnostic criteria explicitly for autism were added for the DSM (III), released in 1980. These criteria were then amended for the DSM III (Revised), released in 1987 and revised again in the DSM IV, released in 1994.

Changes to the DSM have impacted the amount of detail considered in diagnosing autism and the number of criteria that need to be met for a diagnosis to be made and these changes may have been a factor influencing diagnosis rates, alongside enhanced understanding of the condition among clinicians.

The changes to the DSM that were made in 1994 would have had a significant impact on diagnosis rates, and this correlates with the fact that the majority of identified cases are among those people who were born after this date (i.e. under 25’s).

Refinements to the DSM continue, with DSM 5 released in 2013. Changes to the criteria in DSM 5 have likely influenced reported autism rates (Endnote 4).

Changes in the DSM are likely to have significantly impacted the number of people clinically diagnosed with autism over time, and can provide an insight into the decrease in prevalence by age.


Does the survey contribute to the observed change in prevalence across the life span?

The design of the SDAC may also influence the observed drop in autism prevalence as people age. The first stage of the SDAC interview, in which it is identified whether there is a person with disability living in the household, is asked of the first responsible adult with whom the interviewer makes contact. In instances where a child is living at home with their parents, it is more common for a parent to provide the responses to these questions. However, when people are in their late teens and start moving out of home, they will be more likely to answer these questions for themselves and this may affect their propensity to identify as living with autism, although the exact level of this impact is unknown.

It should be noted there were no changes in the questionnaire between the 2015 and 2018 surveys that would have impacted on the likelihood of a person being identified as having autism.


What else might be impacting on the drop in autism prevalence with age?

There are other factors that may also be impacting on the change in prevalence with age. People may learn coping strategies as they mature and no longer feel they are restricted in any of the areas of limitation considered in the SDAC. Similarly, intervention therapies may effectively remediate the challenges of autism for some, allowing them to function without experiencing limitations in their everyday activities.

It is also possible that people are less likely to identify a child as having autism as they get older because there is some sensitivity around the issue, either for the person or for the other family members.

There is some evidence indicating there is another reason there are far fewer older people with autism than young people. Research in a small number of countries, including Australia (Endnote 5), suggests people with autism have a substantially lower life expectancy than the rest of the population.

While each of these factors described above may have had an impact on the reported prevalence rates, it is not possible to quantify the size of the influence they may have had. It should be noted the growth seen in autism prevalence in the 2018 SDAC is consistent with growth in prevalence observed by other sources.



Bibliography

1. National Autistic Society, reviewed at https://www.autism.org.uk/about/what-is.aspx

2. Autism Spectrum Australia, reviewed at https://www.autismspectrum.org.au/content/what-autism

3. Centre for Disease Control and Prevention (2018). Reviewed at https://www.cdc.gov/ncbddd/autism/facts.html

4. Kulage, K.M., Goldberg, J., Usseglio, J., Romero, D., Bain, J.M. and Smaldone, A.M. (2019). How has the DSM-5 Affected Autism Diagnosis? A 5-Year Follow-Up Systematic Literature Review and Meta-analysis. Journal of Autism and Developmental Disorders. doi:10.1007/s10803-019-03967-5.

5. Hwang, Y.I., Srasuebkul, P., Foley, K., Arnold, S. and Trollor, J.N. (2019). Mortality and cause of death of Australians on the autism spectrum. Autism Research, 12:806-815. Doi:10.1002/aur.2086