A tsunami of need

What is the problem?

97,000 talented Australian adults are struggling, facing years of isolation, mental health issues and a lack of fulfilling employment. Why? Because they have high functioning autism (HFA) or Asperger's disorder (AD), and according to a recent report called "We Belong" released by Autism Spectrum Australia (Aspect), they aren't getting the support they need to achieve their goals and aspirations.

"I hate looking stupid. It's the one thing I'm not. I hate having something valuable to say, but no one listens because I can't get it out. I hate feeling like I am walking in sand but leave no footprints so there is no evidence I was ever here at all." Alison, survey respondent, aged 44, QLD.

Around 1 in 100 people have an autism spectrum disorder (ASD). Around 60 per cent of people with an ASD fall into the HFA or AD group. Applying the '1 in 100' prevalence rate to the Australian context translates to around 220,000 people nationwide, of whom 130,000 can be considered high functioning. Of these, approximately 97,000 are aged 18 years and over and they're the people whose experiences we investigated when we undertook the study and who represent a tsunami of unmet need.

We Belong is an Australian first report that provides this talented group of people with the opportunity to have their say about the services and supports they need to achieve their goals and aspirations.

Key We Belong findings include:

· Very high levels of mental health and well-being issues.

· Inadequate levels of support during education years and in the workplace.

· Over one-quarter of people in this category are involuntarily unemployed.

· Respondents indicated high levels of ongoing support needs in many areas of their lives including:

o Social interactions and relationships (77%)

o Finding a job (67%)

o Accessing leisure and social activities (55%)

o Dealing with bullying and discrimination (53%)

o Accessing professional services (59%)

What is We Belong and why was the study conducted?

Autism is a lifelong developmental disorder characterised by difficulties with social interaction and communication. Adults living with HFA and AD have never before been given an opportunity on this scale to have their voices heard, to discover what services and support they need in order to live happy and fulfilling lives and to be contributing members of society.

In 2011, Aspect worked with people living with HFA and AD, and their families and carers to uncover the realities of their daily lives. The resulting report – We Belong – has given us qualitative and quantitative insights into the experiences, aspirations and needs ofthese adults, through topics studied including health, education, work, social life, community involvement, and daily living.

Results

We Belong highlights the lack of of any government funding for services and support for this group of people in the community and proves the vital need for this to change. The biggest challenge is that whilst these people have autism, but no intellectual disability, they do not qualify for government benefits, when this is exactly what they need. A survey participant Jenny, aged 29 from WA stated: "As I am not intellectually disabled, but someone who has the "high functioning" label, others tend to downplay my difficulties because they are not as obvious. I tend to fall between the cracks regarding services – I'm not seen as requiring assistance, when in reality, I do."

Survey results also show that educational experiences for people in this group are characterised by worrying trends including –

· social isolation

· failure to meet learning support needs

· harassment and bullying

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."