Submission to the Select Committee on Autism
7 July 2020
I write in response to the terms of reference to offer the perspective of an autistic family.
We have two children who have been formally diagnosed with autism by our developmental paediatrician. We are lucky we had access to our paediatrician, because she had known our children since birth. However, we know of many families who pay for private assessments at huge cost or wait for a public assessment. These families at times receive inconclusive assessments, which are then clarified at another assessment by another provider. There is inconsistent understanding and application of the DSM5. There is misinformation about gendered presentations of autism by professionals and within the wider community.
There is general misinformation about autism in the general public and a lack of understanding of the interaction between co-morbidities such as anxiety, sensory processing, trauma, ADHD etc which impact the presentation of autism. The ongoing use of functioning labels or levels is harmful as it acts to segregate autistic people from one another, and limit understanding of the strengths and challenges each individual possesses. Further, the deficit model of diagnosis perpetuates the idea of autism as a disorder, or something needing to be fixed.
It would be more helpful if the perspectives on autism within the greater community could be shifted beyond the deficit model and informed by a wider and more broad view of ‘the norm’ from the first years of a child’s life through to adulthood. The idea that humans can meet milestones at the same time as their peers perpetuates the idea that children are ‘behind’ when perhaps they are just developing more slowly that others.
Furthermore, the first line of therapy recommended to parents after their child is diagnosed with autism, is usually ABA or Applied Behavioural Analysis. There is significant evidence, especially first-person reports from autistic people, of the harm and trauma experienced through this therapy. As parents, we instinctively refused this type of therapy as we had no interest in ‘training’ our children to cope with the world. It was clear to us we required a perspective shift as a family, to better design our lives and everyday routines to suit the needs of our children. This has come at some cost to us as adults, having to reduce our commitments to work and other activities, but the rewards are evident in our children.
There are a vast range of views about best practice however I hope this committee will recognise the wellbeing of each autistic person is far more important than any attainment of particular skills or meeting of particular milestones. The components of best practice must be informed by autistic people. There is, however, too greater emphasis on behaviour instead of understanding ‘why’ the person is behaving that way. Behaviour modification is the most predominant method of managing challenging issues. This approach ignores the ‘why’.
The siloed approach to respite, education, therapy etc between government departments and organisations results in an inadequate set of systems and processes. Parents/carers or advocates of autistic people are all too often left to navigate complex systems alone. Unless a person has significant skill and experience in connecting this information, it is inevitable some families are not able to attain unbiased information. This in turn means autistic people may not have a voice and may be subjected to methods of intervention promised by professionals with little evidence.
My eldest child is of kindergarten age. He has been unable to attend despite extensive efforts on our behalf to provide information, strategies and even to attend kindergarten with him. Despite accessing state-funded support, this is still not adequate. The inadequate knowledge and education of educators, as well as the environment itself means he is excluded. The education system is too rigid for those who require greater flexibility. Furthermore, the criteria for support within school systems is based on language
and IQ scores which have been shown to be inaccurate (see https://www.spectrumnews.org/news/iq-scores-not-a-good-measure-of-function-in-autism/)
The NDIS
There are many wonderful aspects of the NDIS however there are several key issues for autistic people.
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Planners have varying levels of autism understanding, and their personal perspectives on the types of support required and the way they view autism generally may be at odds with the autistic person and their family or carers.
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The submission of plans is not transparent, and the effort put into providing evidence of supports needed is overridden by the planner / or someone else who approves the plan.
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The review process is confusing and takes far too much time.
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The management of funds and the plan itself is difficult through the portal as there is only limited information and reports available.
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The remuneration for some services such as support workers is FAR too high when considered against the availability and qualifications of people in these fields.
Research
While research is helpful, we need to listen to autistic people and their preferences as a first step. Shifting professional and cultural views of autism is sorely needed to improve the wellbeing of autistic people. Education for families, carers, educators and professionals to extend our view of what is ‘normal’ is important too to respect the autistic person and their identity. Offering and accepting a broader range of communication tools will manage the accommodations needed by autistic people.
Social / communication participation Almost every social or community setting perpetuates exclusion. From sporting activities, to entertainment venues, very few organisations are responding adequately to the inclusion of autistic people.
We place the wellbeing of our children at the centre of any decision relating to our parenting. Whether to engage in therapy, attend community events or appointments, we work hard to give our children the best chance of participating. However, it is impossible to protect their wellbeing and participate in everyday activities most parents enjoy. Education is a key issue and as a result, we like many other families have no choice available other than home education.
Kind regards