People with autism "fall between the cracks"
Australia’s largest not for profit autism service provider announces a pioneering study to explore the support needs of people aged 18 and over with a diagnosis of Asperger's disorder and high functioning autism.
As Anthony Warren, psychologist and Senior Consultant at Autism Spectrum Australia (Aspect) explains, "This new study gives a talented group of people the chance to have their say about the services and supports they need to achieve their goals and aspirations."
"There is currently a distinct lack of Australian data regarding the life experiences of adults with high functioning autism and Asperger’s disorder. For this reason, we are overlooking their support needs."
"This group cannot access disability services because they do not have an intellectual disability."
Researchers have developed questionnaires for people in this group and for their parents, or family members who have a primary caring responsibility. The project was developed in consultation with people with Asperger’s disorder, high functioning autism and their parents. The questionnaires comprehensively cover life experiences including with services across education, health, mental health, social support, employment, community access and participation.
"The results will generate, for the first time in Australia, data to describe the gaps between existing services and what is actually required to make a real difference for this group of people," continues Anthony.
One respondent says "I believe that as a person who is perceived as ‘high functioning’, [people] tend to downplay my difficulties because they are not as obvious."
"I find it frustrating… [People think I’m going okay but] in reality it is very stressful for me."
"As someone with the ‘high functioning’ label, I fall between the cracks … I am not seen as requiring assistance, when in reality, I do."
The online questionnaires are open until December 16, 2011.