Sid Sidebottom (Braddon, Australian Labor Party) Share this | Hansard source

A vital part my education on autism has been Burnie couple Marisa and Andrew Barry, who have been dealing first hand with autism since their twin daughters Zara and Kayla were first diagnosed. Andrew describes the diagnosis as ‘being let loose in a maze with a blindfold and nobody to help guide you.’ To their great credit Marisa and Andrew were not deterred when heading into that maze and through perseverance and a daily battle they have seen their daughters make great progress in their development. In their own words, it has been a search, and one that continues to this day—something they hope to help overcome for other families through input in a new autism centre announced for my electorate of Braddon by Jenny Macklin, the Minister for Families, Housing, Community Services and Indigenous Affairs. Andrew says:

The week after Zara & Kayla’s second birthday we received their initial diagnosis of PDD-NOS (Pervasive Developmental Disorder—Not Otherwise Specified). The girls received the diagnosis of PDD-NOS not Autism as determined by the Assessment criteria as they were under 3 years of age.

The most disappointing aspect of the diagnosis was the manner in which it was delivered which in summary was ‘they are 12 months behind now, that is a lot for this age, they will probably never catch up, I am very sorry to be delivering you this news but I have to rush I have another appointment to attend.

We didn’t receive any referral to the Autism Tasmania Network or suggestions of possible or potential treatments or interventions.

This was our first example of the ignorance of the Tasmanian Medical Community to (ASD) Autism Spectrum Disorder.

The couple started their search for information and assistance and began an applied behaviour analysis program developed by Dr Ivor Lovaas and recognised as the most successful and proven intervention for autistic children. Andrew goes on to say:

Research has proven that if a child receives 40 hours a week of 1:1 intervention from an early age (preferably 2) a significant proportion of children lose their diagnosis of Autism.

We commenced this therapy program with Marisa being the active therapist and given other parental responsibilities of 3 young children could only manage 1 hour of therapy per child a day. In order to increase these hours it necessitated us to recruit suitable persons to undertake this role. This process within itself to obtain suitable and reliable persons to undertake this role is very difficult and stressful.

Due to lack of services in Tasmania it was necessary for us to engage the services of Victorian ABA Providers. This was necessary to train therapists to undertake the ABA. This involved a weekend training workshop and monthly visits thereafter. It is necessary for us to pay for her flights to and from, arrange accommodation in addition to her consultancy payments.

We have seen Zara &Kayla progress with their ABA from being strapped in their highchairs requiring full physical prompting to have them clap or wave to now being able to sit at a desk and attend school for lengthy periods of time completing various tasks. These tasks include

• able to read in excess of 250 words
• reasoning skills
• math skills
• appropriate play skills
• appropriate conversation &
• now have receptive comprehension to age level.

As earlier commented, GP & Paediatric services were grossly inadequate, accordingly we sought out specialist services. To obtain such a service we waited for 12 months to see a well-known Sydney based Autism Specialist.

This trip required us to have our eldest daughter cared for whilst we undertook a stressful journey with Zara & Kayla to Sydney for their initial consultation.

Phone consultations on a monthly basis are required to monitor treatments and further testing. As these were not done by visitation they are not Medicare claimable and as such are extremely costly.

The Barrys remain optimistic. Andrew says:

There is no cure for autism. But there is a lot that can be done to improve the quality of life, not only for the directly affected children but also for their families. It is possible to provide any affected children with a normal life through their adolescent and adult life. Sure they may still have a few quirks but haven’t we all—

indeed—

For some this journey will last a lifetime. However it is possible to make a significant difference. Early diagnosis and intervention is the key.

It should not be this hard, Colleagues, and it is families like the Barrys who are blazing a trail for others to follow, particularly in my electorate. We should be doing everything we can to help them, and others who follow, to negotiate their way through the autism maze. I thank honourable members, particularly my colleague for raising this very important issue.

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