Wednesday, January 9, 2013

Unearthing the Experiences of Young People With Autism

Australia’s largest not for profit autism service provider announces the launch of new research to explore the life experiences and support needs of adolescents with high functioning autism* and Asperger’s disorder.

Debra Costley, General Manager, Education, Development & Research at Autism Spectrum Australia (Aspect), believes that this new study is essential to understanding the development of policy and services. She said, ‘we hear from many young people with high functioning autism and Asperger’s disorder, and their families, that there is a distinct lack of support to help them achieve their potential and that can present huge barriers to their success’.

‘At Aspect, we are really keen to unearth the specific limitations in the support available for this talented, yet overlooked group of young people’, Debra continued.

The primary goals of the Aspect research project are to raise awareness and to improve the kinds of services and supports available for Australian adolescents who have an ASD but do not have an intellectual disability.

Aspect researchers have developed questionnaires for adolescents, aged 12-17 with a diagnosis of Asperger’s disorder (AD) or high functioning autism (HFA) and parents of a 12-17 year old with AD or HFA. The questionnaires cover life experiences including questions about their health, experiences at school, friendships, and daily life.

We would like to invite participants to contribute to this research by completing an anonymous questionnaire. Participants will have the opportunity to tell us about their hopes and plans for the future, and about the supports that adolescents with AD and HFA need to achieve their goals.

If you would like to participate in this research, you can:

• Click here to access an online version of the adolescent questionnaire in Survey Monkey.

• Click here to access an online version of the parent questionnaire in Adobe Reader. If you do not already have Adobe Reader installed on your computer, you will be prompted to download the program free of charge. (Please note than in some versions of Adobe Reader, you may need to scroll back to the top of the questionnaire to access the ‘Submit’ button when you have finished.)

• Contact Susanna Baldwin, Aspect Research Officer, on 02 8868 8510 or This e-mail address is being protected from spambots. You need JavaScript enabled to view it to request a paper copy of either or both questionnaires. They will post this to you with a reply-paid envelope so that you can return it directly to them.

*Having ‘high functioning autism’ means you have autism but you do not have an intellectual disability. If you are not sure whether you have high functioning autism, please contact Anthony Warren, ASD Consultant at Aspect, on 02 8977 8302 or for further advice.

Ends: Research shows that autism spectrum disorders affect around one in 100 people and that they are more common in males than females. Autism is a lifelong developmental disability which remains largely misunderstood by the community despite its prevalence and far-reaching consequences.  Limited social skills and an inability to communicate and interact are the most obvious impairments. Early intervention opens up the best opportunities for progress so that many people with autism can lead productive lives.

 Autism Spectrum Australia (Aspect) operates a network of eight schools plus more than 80 satellite classes in one of the world’s biggest education programs for children with autism.  A not-for-profit organisation working in partnership with families and service providers, it offers evidence-based interventions for individual needs.  Professionals and families benefit from Autism Spectrum Australia’s assessments, early intervention, behaviour support, workshops, volunteer support, and outreach programs.  It also offers services for adults with autism.  All programs aim to maximise learning potential, participation, and independence by increasing capacity and confidence in communities.

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