Summary of findings - We Belong Too
Summary of key findings
“We Belong Too: an Australian study of Adolescents with Autism” undertaken by Autism Spectrum Australia’s new Aspect Practice division.
The aim of the study
The findings from this world-first study should encourage governments and the community at large to increase funding for support services, so that adolescents with autism can move through education and into employment and the wider community and achieve their full potential.
What was discovered: general?
This study is unique in its breadth of inquiry, but more exceptional in that it directly surveys the adolescents for their opinions on their support needs, experiences and future aspirations.
The outcomes from the parent survey reported a shortage of coordinated, appropriate and affordable Autism-specific support services – suggesting an urgent need for more Government and community support and funding for adolescents with autism to strengthen their chances of contributing meaningfully as adults to the Australian economy and living independent lives.
What was discovered: mental health?
There is a need for additional mental health support for adolescents with autism.
- 69% of adolescents feel lonely
- 66% of adolescents need support managing stress
- 58% of adolescents need more support for bullying and discrimination
- 49% of parents report their child needs additional support for a mental health condition
The Interface Between Autism Spectrum Disorders and Mental Health: The Ways Forward Report (Warren, 2012) identified an estimated 100,000 people in Australia have autism and a comorbid mental illness. It highlighted the disturbing fact that 50-70% of people with Autism experience a lifetime mental illness such as depression and anxiety disorders. It also found the support mechanisms that are available lack coordination between services, are not appropriate to the needs of people with autism, and often fail to recognise mental illness symptoms in individuals with autism. Warren (2012) concluded a national awareness raising campaign is necessary to inform the community about the life aspirations of people with autism.
The current study also provided evidence that the main health issue the adolescents are dealing with is stress. Both the adolescents and the parents reported that there is a significant need for adolescent support for coping with stress. Parents also reported that many of their children required additional support for mental health conditions.
What was discovered: education?
ASPECT’s new We Belong Too study identifies a disparity in opinions about educational experiences between the adolescents and the parents. The difference in the amount of support adolescents reported they require, and perception of the level of support the parents report their children need, was stark.
While less than half the parents considered their children needed additional learning support, evidence from the adolescents emphasised that approximately 70% of the adolescents reported their educational needs are not being met.
The adolescents defined several areas of concern for their educational welfare, around their ability to:
a) pay attention and concentrate in class
b) understand teachers in the classroom
c) complete their homework
d) prepare and undertake exams, and
e) manage in-class work.
These concerns may be contributing to the stress that the adolescents reported.
These findings are valuable since they focus attention on the educational needs of the adolescent, and underline the idea that parents and educators, although working with the best intentions, do not necessarily have the same perspective. From these results, it appears that adolescents would benefit from additional educational support.
This research shows that adolescents with autism need additional educational support.
- 74% of adolescents have difficulty in concentrating in class
- 73% of adolescents need more support preparing for exams
- 66% of adolescents need more support with completing their homework
- 63% of adolescents need more support with school class work
- 62% of adolescents need more support understanding teachers in the classroom
- 66% of parents believe educators are not well-informed about autism
Although just over half of the parents perceive that their child’s educational experience has been positive, most still believe that the educators are not well informed about autism. These findings suggest that additional professional development and support may be needed for mainstream school teachers.
What was discovered: employment?
The adolescents want to find a job or study.
- 51% of the school students want to have a part-time job outside of school hours
- 39% of the school students plan to go to TAFE, university or complete training for a specific job
- 24% of the school students plan to get a job after they graduate from school
Parents, however, are concerned their children are inadequately prepared for employment, and the community is ill-equipped to provide employment opportunities.
- 50% of parents report their adolescent is not receiving adequate support in preparation for employment
- 43% of parents are concerned that employment agencies are not well-informed about the capabilities and strengths of young people with autism
Transitioning from school to employment can be difficult for people with autism. In 2012, ASPECT released the We Belong study (Aspect, 2012) which identified that only 54% of adults with autism, who had an IQ over 70 and did not have an intellectual disability, were in paid employment. Furthermore, it reported that one-third of the adults surveyed were seeking more work hours, or more appropriate work.
Part of the under-employment issue has been attributed to the problem of employment services being uncoordinated and employment agency staff often being insufficiently trained to provide appropriate employment opportunities for people who have autism (Warren, 2012).
In line with the We Belong study, the current study revealed the inadequacies of the employment process. The evidence of the desire of adolescents to work, and earn an income, underscored the juxtaposition between their expectations, and the evidence of the parents’ concerns about a) their children’s lack of preparedness for applying for jobs, b) the ill-equipped employment agencies, and c) inadequate employer job training and support.
There is, however, plenty of evidence that programs supporting adolescents through the transition from school into the workforce provide tangible benefits for individuals with autism (Strickland, Coles, & Southern, 2013; Wehman, et al., 2013; Costley, Keane, Clark, & Lane, 2012).
By assisting adolescents with individualised plans, providing ongoing and appropriate intervention, and delivering funding for the provisions that are needed to meet their individual goals, young adults with autism will have the opportunity to flourish.
What the research showed – adolescents: general
The findings demonstrate adolescents with autism aged between 12 – 17 years of age need more support in the school classroom, managing bullying and discrimination, coping with stress and making friends.
These adolescents are often prevented from accessing support facilities due to a shortage of professional services. These services are frequently uncoordinated and typically expensive. Compounding these deficiencies in professional support is the lack of understanding about autism amongst many support service providers.
The results from this study reveal that the adolescents in this study are ambitious and aspirational. The adolescents desire to work, study and travel. Independence is their primary goal.
Factors preventing access to support services
Cost of services, long waiting lists, lack of appropriate services in local area, insufficient information about available services, inadequate service coordination, shortage of practical support.
ADDITIONAL INFORMATION AND BACKGROUND TO THE RESEARCH
What is autism?
Autism is a lifelong developmental disability characterised by marked difficulties in social interaction, impaired communication, restricted and repetitive interests and behaviours, and sensory sensitivities. The word ‘spectrum’ is used because the range and severity of the difficulties which people with autism experience can vary widely.
Building on the We Belong (2011) Research into adults with autism.
In 2011 Autism Spectrum Australia (Aspect) conducted the first We Belong study to investigate the experiences, aspirations and needs of adults with autism who do not have an intellectual disability (Aspect, 2012). The results from this study highlighted the immense unmet needs that these adults were experiencing. The findings focused attention on the barriers the adults were facing in accessing support through professional services due to a lack of appropriate services, and long waiting lists. The report also identified high levels of mental illness within the adult autism community and the severe shortage of suitable service professionals and support groups. Many of the adults reported problematic schooling pathways, relentless school bullying problems, and often a truncated education with the result being adults were under-skilled for the workforce, and often unable to find appropriate and meaningful jobs.
Aspect is addressing the issues raised in the We Belong study by developing and implementing innovative transition from school to work and study programs, and school-based anti-bullying initiatives. More widely, Aspect provides Adult Social Groups, Adolescent Support Groups and Post-School Programs. These programs offer centre and community based learning and recreational activities for individuals with autism. They provide individualised and group support for developing social, communication and independent living skills.
Why do the research?
This research project innovatively surveyed adolescents with autism who are at the higher functioning end of the spectrum, and parents of those with high-functioning autism.
The purpose of the study was to develop a profile of the life experiences, future aspirations, and support needs of adolescents, aged between 12 and 17 years, who have autism.
The primary goal is to raise awareness, promote discussion and pave the way for change by establishing services and support that are essential for positive and independent life outcomes for adolescents with autism.
Key Areas of Investigation
The research questions covered adolescent life experiences, support needs and their aspirations:
- What are the adolescent experiences with regard to their:
- Social life
- Accessibility of services
- What services and support provision are needed?
- What are the adolescent’s aspirations for the future?
Statistical relevance: how the research was undertaken
The study was conducted between November 2012 and June 2013. One hundred adolescent and 65 parent surveys were collected and analysed.
Sample sizes met the statistical power requirements with a sample population of 100 adolescents and 65 parents. The mixed method approach of qualitative and quantitative data, together with the range of school streams (mainstream, support class, specialist school, home school), and spread across six Australian states and territories provided a sample diversity that increased the external validity and reliability of the results (Wilson-Doenges & Gurung, 2013).
In the parent survey, families from both regional and metropolitan areas responded. Forty-two per cent of the parent respondents reported they lived in metropolitan areas and 55% in regional areas of Australia. Metropolitan was defined by Australia Post capital city postcodes. Regional areas included towns and cities outside the metropolitan postcodes.
Most of the families in the parent survey were from NSW (48%), with Queensland demonstrating the next largest group (22%). South Australia and Victoria both represented 11% and the Australian Capital Territory 4%. The Northern Territory recorded 1% participation and 3% did not provide a location.
Fifty-seven per cent of the adolescents reported their residential location to be in NSW. Fifteen per cent reported their location to be in Queensland, 13% in South Australia and just six per cent between Victoria, Western Australia and the Northern Territory. Nine per cent did not respond to this question.