We Belong is the first large-scale research study in Australia to describe the life experiences, aspirations and support needs of adults who have an autism spectrum disorder (ASD) with no co-occurring intellectual disability. Through a comprehensive body of self-report data, biographical stories and personal reflections, it offers a window into the lives of Australian men and women who experience the daily challenges of a largely invisible, frequently misunderstood, and yet highly complex and nuanced disorder.
Aspect Australia’s Autism is a lifelong developmental disability that impacts on the way a person understands, communicates with and relates to others and the world around them. Recent studies indicate that around one in 100 people has some form of autism, with diagnosis rates acknowledged to be on the rise (Williams et al., 2008).
The clinical term ‘Autism Spectrum Disorder’ (ASD) encompasses three diagnostic categories, as listed in the current edition of the Diagnostic and Statistical Manual of Mental Health Disorders (DSM-IV; American Psychiatric Association, 1994):
- Autistic Disorder
- Asperger’s Disorder
- Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS).
The clinical identification of ASD is based on a ‘triad of impairments’, namely:
- Qualitative impairments in social interaction.
- Qualitative impairments in communication.
- Restricted, repetitive and stereotyped patterns of interests, activities and behaviours.
Autistic Disorder (or ‘classic’ autism) is characterised by marked impairments in all three domains of the triad, with symptoms generally evident prior to three years of age. Asperger’s Disorder entails the same core features as Autistic Disorder, but without any significant delay in early language acquisition, cognitive abilities or self-help skills. A diagnosis of PDD-NOS may be applied when an individual presents with deficits in social interaction and in at least one other area of the triad, but does not meet full criteria for either Autistic Disorder or Asperger’s Disorder. For this reason, PDD-NOS is sometimes referred to as ‘atypical autism’.
As denoted by the term ‘spectrum’, autism is a highly heterogeneous disorder, meaning that every individual with an ASD will have a unique profile of strengths and challenges.
Although there is some considerable overlap between autism and intellectual disability, studies have estimated that around 60 per cent of people diagnosed with an ASD have normal or above average intellectual ability (Chakrabarti & Fombonne, 2005).[1] These individuals are often informally described as having ‘high functioning autism’. By definition, the majority of people diagnosed with Asperger’s Disorder will fall into the ‘high functioning’ group.
Applying the ‘one in 100’ autism prevalence rate to the Australian context translates into around 220,000 people nationwide who have an ASD, of whom 60 per cent, or 130,000, can be considered high functioning. Of these, approximately 97,000 are aged 18 years and over.[2]
Research on adults with autism
Although the autism research field has traditionally been dominated by studies focusing on children, there is now a steadily growing body of literature investigating the presentation, experience and correlates of ASD in adults. Many studies in this area have taken a fairly narrow topic focus or worked with a relatively small number of participants, or both. Notable exceptions include:
- a UK-wide survey of 237 adults with Asperger’s Disorder conducted by researchers at Sheffield Hallam University and covering a broad range of topics, including diagnosis, higher education, employment, accommodation, social life and relationships, the legal system, and mental health (Beardon & Edmonds, 2007);
- the National Autistic Society’s I Exist project: a UK-wide survey of over 1,400 adults with autism and their parents, aimed at raising government and public awareness of service and support needs for this group;[3]
- the Adolescents & Adults with Autism (AAA) study at the University of Wisconsin, which is collecting data from 405 participants over a five-year period, with a particular focus on documenting the challenges and impacts for families supporting a young person or adult with ASD.[4]
In addition, some authors have undertaken large-scale literature reviews in an effort to synthesise research findings across this area: relevant reports include Barnhill (2007), Stuart-Hamilton et al. (2009), and Howlin & Moss (2012).
Together, these studies and reviews have highlighted the vastness and complexity of adult autism as a research field. Some of the key issues that have been explored in this area include:
- mental health and emotional wellbeing;
- social participation;
- barriers to employment;
- access to and eligibility for services;
- choice and control over interventions and supports;
- rights and discrimination.
In the Australian context, these themes have been echoed in state government reports, including Stronger Together: A New Direction for Disability Services in NSW 2006-2016 and the Autism State Plan developed by the Department of Human Services, Department of Education and Early Childhood Development, and Autism Victoria in May 2009. Priority areas for reform identified in these reports include:
- social inclusion and participation;
- services and supports that facilitate, rather than act as barriers to, participation;
- strengthening the ASD experience of the workforce;
- specialist support to enhance educational opportunities, including during transition stages;
- pre-employment and employment support, including workforce capacity building;
- strategies to effect successful participation in the community.
Stronger Together comments perceptively that individuals with ASD tend to “fall between the cracks of disability service provision”, reflecting a lack of professional understanding about the needs of this group that results in their exclusion from services. It is for this reason that the report identifies an urgent need for “development of a comprehensive evidence base about autism spectrum disorders”.
Most of the studies listed above have profiled adults from across the autism spectrum, including those with profound intellectual impairment and significant support needs. In the light of this, it is important to acknowledge research that suggests if anything, higher functioning adults experience worse outcomes in life than other ASD groups. This is because the consequences of having serious difficulties in social interaction and communication are not compensated for, so much as exacerbated by, a higher intellectual ability and normal language development (Mordre et al., 2011).
To date, no single published research study in Australia has attempted to comprehensively profile the lived experiences of a large sample of adults with high functioning ASD across a wide range of life domains. We Belong sought to address this gap by conducting a detailed survey of over 300 adults who have an ASD with no co-occurring intellectual disability, exploring topics such as their health, education, work, social and community activities, and daily life.
[1] Intellectual ability has traditionally been defined in accordance with the non-verbal Intelligence Quotient (IQ) scale. An IQ score falling below 70 is considered to reflect a generalised intellectual disability.
[2] Estimate based on ABS Cat. 3201.0 – Population by Age and Sex, Australian States and Territories, June 2010.
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