A tsunami of need

These experiences at a young age lead people to years of struggle with ongoing mental health issues as they battle with the consequences of childhood isolation. We Belong also discovered that an incredible 70 per cent of respondents are not receiving enough support to meet their needs in other key life areas including social skills development, access to employment and community participation.

What needs to be done

The first step is to raise awareness and knowledge about the abilities of adults with HFA and AD, together with their service and support requirements. Only by significantly shifting public and professional perceptions of what it means to be an adult with HFA or AD, will lasting social and cultural change for this group be achieved.

In regard to employment, there needs to be consultation to determine if there is interest from governments, employer organisations and individual employers to develop opportunities that match the abilities and support needs of adults with HFA and AD to potential work environments.

For health, the priority is to talk with governments and the community about the very significant mental health needs of this group. We need services with a range of expertise and support options that could contribute to improved mental health and quality of life outcomes.

There is also a lack of access to services that know enough about autism. These should be readily available to these people to provide ongoing counselling, psychology and social supports.

In addition, there can be barriers to service access caused by reliance on standardised assessment tools and tight eligibility criteria. These can ignore variability in the range of needs that people with AD and HFA have, sometimes excluding them from the service altogether. Access to these services are essential to help manage the emotional scars and the pervasive sense of 'not fitting in' - the result of years of bullying, social rejection and isolation.

A mother of a 23-year-old female with HFA in Tasmania said, "My husband and I can't die. We are our daughter's social network, main support, teachers and certainly her advocate."