Quality Declaration
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Introduction
Autism is a neurodevelopmental disorder which affects the brain’s growth and development. It is a lifelong condition, with symptoms appearing in early childhood (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 criteria (Endnote 3). This article uses results from the 2015 Survey of Disability, Ageing and Carers (SDAC), to present an overview 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. Population characteristics In 2015 there were 164,000 Australians with autism, a 42.1% increase from the 115,400 with the condition in 2012. Changes in clinical diagnostic criteria implemented in 2013 and changes to questions identifying people with disabilities in the 2015 SDAC may have had some impact on the prevalence, relative to 2012. These issues are explored in some detail in the ‘Understanding autism prevalence’ section of this article. 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. For example, the Center for Disease Control and Prevention in the US estimates males are 4.5 times more likely than females to be diagnosed with an autism spectrum disorder (Endnote 4). Changes in prevalence across the lifespan 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.  Source(s): ABS Survey of Disability, Ageing and Carers: Summary of Findings - 2015 There are several possible reasons for the variation in autism prevalence across the lifespan between the 2012 and 2015 SDACs, including changes to diagnostic practices. These reasons are explored in the ‘Understanding autism prevalence’ section of this article. Geography The proportion of people estimated to have autism varied by state or territory, from 0.5% in Western Australia to 1.0% in South Australia and Tasmania.  Source(s): ABS Survey of Disability, Ageing and Carers: Summary of Findings - 2015 Characteristics of people with autism 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 2015, almost all children on the autism spectrum had some form of educational restriction (96.7%), including a small number who were unable to attend school because of their disability. Almost half (48.0%) the children attended a special class in a mainstream school or a special school. Of the young people (aged 5 to 20 years) with autism who were attending school or another educational institution, 83.7% reported experiencing difficulty at their place of learning. Of those experiencing difficulties, the main problems encountered were fitting in socially (63.0%), learning difficulties (60.2%) and communication difficulties (51.1%).  Source(s): ABS Survey of Disability, Ageing and Carers: Summary of Findings - 2015 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). More than two out of five (44.1%) children 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. People with other disability were 2.3 times more likely to have a bachelor degree or higher than people with autism, while people with no disability were 4.4 times more likely to have one. All people with disability and those with no disability were 1.6 times more likely to have an Advanced Diploma, Diploma or Certificate III or IV than people with autism.  Source(s): ABS Survey of Disability, Ageing and Carers: Summary of Findings - 2015 Employment 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 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. The unemployment rate for people with autism spectrum disorders was 31.6%, more than three times the rate for people with disability (10.0%) and almost six times the rate of people without disability (5.3%). Severity of 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. In 2015, over half (51.2%) of 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. Almost half (46.0%) of people with autism had a profound or severe mobility restriction, indicating that they needed help or supervision to move around. Need for assistance 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 communication. This is to be expected given autism spectrum disorders are characterised by deficits in social and communication skills.  Source(s): ABS Survey of Disability, Ageing and Carers: Summary of Findings - 2015 Additionally, the frequency with which people with autism needed assistance was high. 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%). For a description of what tasks are included in each of these activities, please see the Glossary.
 Source(s): ABS Survey of Disability, Ageing and Carers: Summary of Findings - 2015 Assistance received 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), particularly in the core activity areas of self-care, mobility and communication. The graph below shows the proportion of people with autism who received assistance with at least one of the core activities at least once a day by the source of that assistance.  Source(s): ABS Survey of Disability, Ageing and Carers: Summary of Findings - 2015 Unmet need for assistance The 2015 SDAC found that 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.  Source(s): ABS Survey of Disability, Ageing and Carers: Summary of Findings - 2015 The largest deficit in assistance was with cognitive and emotional tasks. In 2015 there were 61,800 people with autism spectrum disorders who needed more help with cognitive or emotional tasks (managing their emotions and/or behaviour) than they currently received. Understanding autism prevalence As noted above, the 2015 SDAC estimated there were 164,000 people with autism, 42.1% more that the number estimated in the 2012 SDAC (115,400). The 2015 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 2012 SDAC, indicating that for both surveys there were age-related factors influencing identification of people with these conditions. This section examines factors which may have influenced the number of people identified as having autism between the 2012 and 2015 SDAC, and the changes in estimated prevalence of autism across age groups. Changes in diagnoses 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 Diagnostics and Statistics Manual of Mental Disorders (DSM). The DSM suggests 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 V released in 2013 and this will likely impact reported autism rates (Endnote 5). The introduction of DSM V would therefore have influenced the results of the 2015 SDAC, especially among young people. 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. The survey design 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. Changes to the survey questions There have been changes to survey questions between 2012 and 2015 which while have minimal impact are useful to consider when understanding the prevalence of reported autism. The initial stage of the interview completed with the first responsible adult encountered includes questions about the seventeen areas of limitations collected by the SDAC, and the main condition causing each of these limitations. The seventeen areas of limitation assessed in the 2015 SDAC was an expansion on previous SDACs, with two extra areas of limitation added for the latest survey. The extra areas were memory problems or periods of confusion causing restriction; and social or behavioural difficulties causing restriction. As mentioned above, the impact of this change was minimal with almost 3,500 people (2.0%) identified as having autism through the inclusion of these limitations. However, it should be noted that these respondents can be identified as having autism through a number of SDAC questions and not specifically as a result of the two additional areas of limitation. Other factors 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. While each of these factors described above may have had an impact on the reported prevalence rates, it isn’t possible to quantify the size of the influence they may have had. It should be noted the growth seen in autism prevalence in the 2015 SDAC is consistent with growth in prevalence observed by other sources. Looking ahead The SDAC continues to provide a wealth of data about the prevalence of both specific disabling conditions and the supports people with those conditions need to assist them in participating in everyday activities the rest of the community may take for granted. The data available from the SDAC helps the Australian community to understand the nature of impairments and the associated support needs of all Australians with disabilities. People with autism may find social engagement difficult as it is a key deficit that is characteristic of the disorder, but the 2015 SDAC indicates they also face barriers with economic participation, with their employment and post-school education rates well below that of people with other disabilities. The increasing size of the population identified as being affected by autism, combined with ongoing issues in their engagement in education and employment suggests that further support is required to ensure that people with the condition are able to have economic and social independence. Bibliography 1. Amaze, cited 1st March 2017 http://www.amaze.org.au/discover/about-autism-spectrum-disorder/what-is-an-autism-spectrum-disorder/ 2. Autism Spectrum Australia, cited 1st March 2017 https://www.autismspectrum.org.au/content/what-autism
4. Centre for Disease Control and Prevention, USA, cited 1st March 2017 http://www.cdc.gov/ncbddd/autism/data.html 5. Maenner MJ, Rice CE, Arneson CL, Cunniff C, Schieve LA, Carpenter LA, Van Naarden Braun K, Kirby RS, Bakian AV, Durkin MS. Potential Impact of DSM-5 Criteria on Autism Spectrum Disorder Prevalence Estimates. JAMA Psychiatry. 2014;71(3):292-300. doi:10.1001/jamapsychiatry.2013.3893 6. The National Autistic Society, 2011, The life we choose: shaping autism services in Wales, cited 14th March 2017 Document Selection These documents will be presented in a new window.
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