Submission
No 9
INQUIRY INTO SERVICES FOR PEOPLE WITH AUTISM SPECTRUM
DISORDER
Name: James Tucker
Date Received: 6 January 2016
Submission S009 Received 06/01/2016
Family and Community Development Committee
Family and Community Development Committee
Parliament House
Spring Street
EAST MELBOURNE VIC 3002
Dear Committee Members
I appreciate the opportunity to make a contribution to the Autism Services Inquiry.
My interest in the Inguirv
I learned that I have ASD (Autistic Spectrum Disorder) at the age of 56 but only turn 58 this year. This late in life revelation has finally allowed me to make sense of my frustrating and very often disappointing life. Also, my wife and I had our son tested and we now know that he has A5D. Therefore, while our son was only diagnosed with ASD at the age of 12, we are now well positioned to help him through the sorts life challenges that I have had to deal with.
I am most fortunate. I have wonderful parents and a very understanding wife. My wife and I are both well educated and, between us, we earn a good income. I now work in an understanding and supportive environment. However, without this support, I have no doubt that I would very likely be destitute and without hope. Crucially, we are particularly well positioned to advocate strongly for our son. Importantly from the viewpoint of the Inquiry, my son and I have been entitled to nothing from the State or Federal governments in respect of our ASD.
Some factors impacting on service delivery
It is not possible to evaluate the adequacy of existing services without having some understanding of this condition. I have learnt a couple of things about ASD that I believe are critical to the Inquiry’s deliberations. Firstly, no two people with ASD are alike. We are not all like the, “Rain Man” ! This means that any assistance has to be individually tailored. Hence, successful treatments may prove to be expensive.
Secondly, ASD treatments are considered most successful if they are provided early in life (before 7 and preferably before 5 years of age), and the majority of current government support is targeted this way. However, many people to not do “present” with ASD symptoms until later in life. And since ASD is incurable, some form of on-going support may also be needed.
Thirdly, ASD is a condition affecting peoples’ social and communications skills. People with ASD tend not handle change well. This means that people with ASD are especially not well placed to advocate for services under a user driven scheme such as the NOS. Also on this point, it cannot be assumed that every person with ASD has someone who can effectively advocate for them . Therefore, independent advocacy might be needed for these people.
Fourthly, I believe that only about a third of people with ASD also have an intellectual disability. The reality is that the majority of people with ASD have normal or above average intelligence. However, unless you are so exceptionally talented that people make excuses for your eccentricities (in which case, you don’t need government assistance), or you have an intellectual disability, then very little government assistance is available to you.
Fifthly, our world is becoming increasingly connected and chimging at ever faster rates. Therefore, there is ever greater emphasis on people skills and resilience. This means that there are fewer
opportunities for people with social and communications disorders such as ASD to maximize their contributions to society. They are becoming increasingly defined by their disability rather than by their strengths.
Sixthly, people with ASD often suffer from one or more other neurological disabilities such as
depression, OCD and/or ADHD. Indeed, only | learnt of my ASD after seeking help for depression
brought on by issues in the workplace. This experience has been very costly to me, both personally and professionally, and to my employer.
Finding value in service delivery
Early intervention is great when it can be identified and provided, and definitely there needs to be adequate accommodation made for all people suffering from an intellectual disability.
However, there are many more people with ASD who receive no help at all from the government. There are few if any programs in the health sector for older children and adults that are tailored to help people with innately poor social interactions and communications skills. And while the tertiary sector is beginning to offer assistance to people with ASD, the school sector needs far greater resourcing and skills to deliver the necessary assistance that every child needs.
There are many roles that could be created in the workplace which would ideally be suited to people with ASD. There is some evidence that this is starting to happen, for example in the IT industries in the United States. While it is not up to government to prescribe roles in the workplace, the government can and should provide far greater encouragement and leadership in this area.
While these interventions could be costly, | believe that the benefits that would accrue from
engaging optimally with all the people who have ASD would far outweigh the costs.
In conclusion
There is increasing community awareness about ASD and other conditions such as depression. This is helping to remove the stigma that is associated with these disorders so that people who need treatment are now more inclined to seek assistance. However, there is still a way to go (as evidenced by a case that was decided by VCAT late in 2015
://www.sbs.com.au/news/article/2015/12/18/qbe-insurance-discriminated-against-student depression). This is the time to entrench the early gains and invest in the right strategies to get the best out of all Victorians irrespective with ASD.
Thank you for the opportunity to make a contribution to this important Inquiry. If invited, | am
prepared to appear before the committee at a public hearing.
Yours sincerel
James Tucker
6 July 2016