Of central importance to this research was its focus on capturing the personal perspectives and stories of adults with AD and HFA, thus giving a unique ‘voice’ to a group whose needs have not been well understood or documented. These first-person data were complemented with information gathered from the parents of adults with AD and HFA, together with relevant service providers.
This report presents a comprehensive, though not exhaustive, overview of the findings of the We Belong survey of adults with Asperger’s Disorder and high functioning autism. Findings from the parent survey and service provider interviews are available in separate reports.
Overview of the study
In its entirety, the We Belong study comprised three complementary arms of data collection:
- A survey of adults with Asperger’s Disorder and high functioning autism.
- A survey of parents of adults with Asperger’s Disorder and high functioning autism.
- Telephone interviews with service providers who have professional dealings with adults with Asperger’s Disorder and high functioning autism.
Seventy-one per cent of respondents were male and 29 per cent were female.
The predominance of males in the sample is not unexpected, in view of the well-recognised gender imbalance in ASD diagnoses. However, it is notable that there is a higher proportion of females in the We Belong respondent group than might be expected in an average clinical population. The male–female diagnostic ratio for ASD is commonly considered to be around 4 to 1 (Whiteley et al., 2010), while the male–female ratio in this sample is approximately 2.3 to 1.
Whilst there is no immediately obvious explanation for the gender profile of the respondent group being shaped in this way, it may be considered a strength of the study that it has generated a strong subset of data pertaining to females with ASD, given the relative dearth of targeted research in this area (Gould & Ashton-Smith, 2011).
Respondents ranged in age from 18 to 70, with a median age of 30 years. Figure 2.1 presents a breakdown of the respondent group by specified age brackets; namely 18 to 25 and ascending decades thereafter.
Like females, older people have historically been under-represented in autism research, and especially in work that engages directly with the ASD population. For example, Stuart-Hamilton et al. (2009), in a review of international literature on adults with AD and HFA, identified just five qualitative studies that included individuals over the age of 30 as participants. The We Belong dataset significantly addresses this gap in current knowledge by providing in-depth insights into the lives of 122 adults with AD and HFA in the 30-plus age group.
21 per cent of adults in the We Belong study sample were married or in a de facto relationship contrasts noticeably with the 2011 Australian Census data, which showed almost half (49 per cent) of Australian adults to be in a registered or de facto marriage.
Eleven per cent of respondents indicated that they had at least one child aged 16 or under.
A further seven per cent of respondents ticked the alternative response box to indicate they agreed with the statement: “I believe I have an autism spectrum disorder, but I have not received a professional diagnosis”. Key characteristics of this small subset of respondents are explored briefly at the end of this chapter.
This research indicates a wide-spread in the ages at which respondents received an ASD diagnosis. Within the survey sample, the earliest reported diagnoses were received at age two and the latest at age 66. Just ten per cent of respondents were diagnosed during their pre-school years (up to the age of five), with close to half (45 per cent) diagnosed after the age of 18. The median age of diagnosis for all respondents was 23 years, with no difference between males and females.
As noted in the Introduction, there has been a substantial increase in diagnosis rates for ASD since the earliest prevalence studies were conducted in the 1960s (Williams et al., 2008). This trend is variously attributed to a heightening awareness of the disorder amongst parents and professionals; the gradual broadening of the diagnostic criteria; the now more frequent identification of children with mental retardation or language impairment as also having autism; and a growth in early-age diagnosis (Bishop et al., 2008; Bishop et al., 2010; Weintraub, 2011). This being the case, we might expect to see an overall pattern of the older adults in this study having been diagnosed with ASD later in life than their younger co-respondents.
Our findings confirm this anticipated relationship between chronological age and age of ASD diagnosis for the survey sample.
In descriptive terms, this indicates a general trend for adults aged 30 and over at the time of the survey (that is, born up to 31st December 1981) to have been diagnosed with ASD within the last ten years of their life to date. Out of a total of 122 respondents in the 30-plus age group, there were only five recorded instances of a diagnosis being obtained before age ten, and a further nine before age 20. For respondents aged under 30 (born from 1st January 1982 onwards) age of diagnosis was more varied, with around half of the 113 individuals in this group having received their diagnosis between two and ten years of age.
 Census data on marital status applies to individuals aged 15 and over. Data accessed 26 June 2012 from: http://www.censusdata.abs.gov.au/census_services/getproduct/census/2011/quickstat/0?opendocument&navpos=220.