As part of our 'autism around the world' series, Tania Marshall discusses autism awareness in Australia in this exclusive article. Tania is a psychologist and author and her first book, “I Am AspienGirl: The Unique Characteristics, Traits and Gifts of Girls on the Autism Spectrum” won an 2015 IPPY eLIT Gold Medal award.
Author: Tania Marshall
Autism in Australia: Tania Marshall
There is still a lack of understanding in the general population in Australia as to what autism is. Many people see autistic people as the stereotypical “Rainman”, “Sheldon Cooper” or someone with quite visible traits. There is little understanding of the “autisms”, the “invisible” type and little to no understanding of the female phenotype. Often I have found myself perplexed, surprised and occasionally disturbed by what I see and hear, both within the autism community, and in the general population/media.
The number of people being diagnosed with autism in Australia continues to rise. According to a recent report by the National Disability Insurance Scheme (NDIS) Quarterly Report (June 2015), autism is now the largest disability group in the scheme, comprising 31% of NDIS participants.
Data also shows significant growth in the number of families applying for and/or obtaining Carer Allowance for children with a formal diagnosis of autism. The data indicates ASD prevalence in 2012 had increased to at least 1.63% (or 1 in 61.5) of school-age children.
While some research suggests a reliable autism diagnosis is possible for many children at 24 months, a 2015 study in Australia (Bent, C.A, Dissanayake, C., & Barbaro, J) found an average delay of 2 years (and common delays of up to 4 years). This is a substantial gap between the age at which a reliable and accurate diagnosis is possible, and the average age at which autism is diagnosed in Australia.
The Commonwealth Government's Helping Children with Autism (HCWA) early intervention package has also reported a similar growth in the number of children registered and receiving early intervention. A child must receive a diagnosis before the age of 6 years of age to receive this funding and the therapies provided must be evidence-based. This initiative provides support for autistic children aged 0 - 6 years, their families and carers. Families must see a provider who is registered with the program which includes psychologists, speech therapists and occupational therapists.
Those children diagnosed later miss out on this funding, although depending on their age may receive 20 sessions over their lifetime. In addition, all Australian residents are eligible for 10 sessions a year from Medicare’s mental health care plan to address mental health issues.
Centrelink is the Australian Government agency for social services, and provides payments and services to support those in need. The process of claiming benefits is often confusing and stressful. The eligibility criteria are also complex and may require specialist interpretation and eligibility changes over time. For example, adults are often required to attend interviews, be diagnosed/re-diagnosed and/or meet a points system to determine their eligibility.
The National Disability Insurance Scheme (NDIS) is a recent initiative that aims to provide individualised support for disabled people, but it has recently come under fire for underestimating the prevalence of autistic people, leading to funding issues.
There exists a range of professionals in a variety of areas working in the autism field who have no credentials (diplomas or degrees) and this is a concern. The Australian Psychological Association (APS) has developed the APS Autism Spectrum Disorders Practitioners List to assist health practitioners and the general public locate a selection of practitioners that may suit their needs. These psychologists are identified as having training and experience in the assessment and treatment of autism.
Mainstream education in Australia has recently come under fire in the media for not meeting the needs of autistic children. The criticisms have focused on the lack of inclusion and the use of seclusion rooms. A Canberra principal recently lost her job when a photograph of an autistic pupil inside a cage was published. A senate inquiry has heard from a number of families whose children have been restrained or placed in “seclusion areas”.
Such extreme measures point to profound challenges in schools where staff do not have the training, resources or time to offer the personalised learning and support that autistic pupils need. According to the 2012 ABS Survey of Disability, Ageing and Carers:
- 95% of autistic children experienced educational restrictions at school
- 86% of autistic children had difficulties at school due to issues such as “fitting in”, learning and/or communicating.
School funding varies from state to state, and some mainstream schools do have special education units. To attend any form of special school setting a child must have an IQ of 70 or below, and many are ineligible for extra support as they are deemed too “high functioning”. Their language skills may disqualify them from special school yet their disabilities make mainstream educational setting impossible. Many parents are frustrated with how their children are treated at school and are giving up jobs in order to home-school.
Autism awareness and support services have generally been focussed on children. Young people leaving school may need transition programs and support to function well in the adult world, but a lack of these can prevent them from:
- living independently
- finding and maintaining meaningful employment
- feeling part of the community
- developing and maintaining relationships.
If you are an autistic adult you must meet certain criteria to receive the “disability pension”. There are few professionals trained to diagnose adults, and many adults remain undiagnosed and/or misdiagnosed.
Many adults struggle in university and do not finish their degrees due to the stresses of juggling the demands of school, work and life. The ‘lost generation’ of adults often struggle to gain an accurate diagnosis due to cost, lack of professionals who work with adults, and then a lack of follow up/ mental health services.
Unemployment rates are high for autistic people, including for those with high abilities. The Department of Human Services has been working with Hewlett-Packard (HP) and Specialisterne to help improve employment figures in the autism community. Specialisterne, a non-profit organisation that focuses on helping autistic people apply their talents to work in the technology field, is also working alongside Microsoft.
La Trobe University’s Olga Tennison Autism Research Centre is partnering with Government, industry and NGO’s to maximise opportunities for meaningful work for autistic adults.
Autism has historically been considered a predominantly ‘male’ condition, with much of the books, assessment tools and resources available based on males. There is now a growing awareness that autism presents differently and more subtly in females. The result of this is that that there are large numbers of autistic girls and women who have been missed and/or misdiagnosed.
Future research will likely focus on:
- developing a more systematic understanding of the female presentation of autism
- developing better assessment tools
- raising awareness amongst professionals involved in early identification and diagnosis of females
- researching compensatory mechanisms and coping strategies.
Date added: 13 April 2016