Commonwealth Parliament Select Committee on Autism
Department of the Senate
PO Box 6100
Parliament House
Canberra ACT 2600
17 July 2020
Thank you for the opportunity to make a submission to the Committee’s inquiry into and report on the services, support and life outcomes for autistic people in Australia and the associated need for a National Autism Strategy.
I am the mother of a six year old child diagnosed as autistic in May 2019 who started kindergarten in a mainstream public primary school in January 2020. His father and I have been on a steep learning curve about autism and the supports available since this time. This submission addresses those aspects of the inquiry terms of reference for which we have experience. In short, we support the development of a National Autism Strategy and make related recommendations in italics and bold, below.
Current approaches and barriers to consistent, timely and best practice autism diagnosis
Our son’s diagnosis is Autism Spectrum Disorder with Level 2 supports. If it was still a separate diagnosis, our son would be considered to have Asperger’s Syndrome as he had no delay in acquiring language and no ongoing language difficulties.
The diagnosis was made by a private child psychologist almost 12 months after feedback from the early childhood educators at his (non-daycare) dedicated preschool. Although they were not qualified diagnosticians, nor medically trained, and we were initially offended by the suggestion there was ‘something going on for him’ that we should look into, I’m now grateful that the preschool staff spoke up.
That enabled us to explore what was getting in the way of his settling into preschool and engaging with his peers, beginning with social skills classes and consulting with occupational therapists. After 10 months of focusing on the functional ‘impairments’ - and assuming his was typical behaviour for a child new to an educational setting outside of the family – we started to question whether it was something more and possibly autism. By that stage we were beginning to feel anxious and frightened, based on stereotypical portrayals of autism involving a loss of language skills, withdrawal of affection or even recognition of loved ones, aggressive behaviour and repetitive, robotic ways of being. We now know how inaccurate and hurtful such stereotypes are. But at the time we were fearful and wanted an assessment as early as possible, so did not wait for the public developmental paediatrician appointment 6 months away, but paid for a private psychologist.
We appreciate the approach and findings of the psychologist we used. However, we wonder about the standard diagnosis being a matter of subjective observation rather than drawing on biological markers such as MRIs for neurological differences (such as those outlined in Temple Grandin’s book, The Autistic Brain), sensory processing (given over or under-sensitivity to noise, light, texture etc relative to neurotypical individuals are common features of autism) and/or genetic mapping (given the heritable
nature of autism). We suggest the Committee look into other ways in which current diagnoses can be supplemented by less subjective methods.
Now that we have a diagnosis and have read widely, have therapeutic support and engage with autistic led organisations and individual adults, we can see the many signs of our son’s autism that were present much earlier than age 5, when he was diagnosed. Two of these were frequent wakings overnight and a
hand flapping ‘stim’ (or self-stimulation) which he did from very young (~ 4 months old). | identified
these at every GP check up (6, 12, 18, 24 and 36 month plus at vaccinations), but was told each time — by different, and very capable doctors — that as he made eye contact and had had no delays in acquiring language, there was no basis for considering autism. This was patently wrong and uninformed. We believe there needs to be significantly greater awareness of the manifestations of autism, the breadth of the spectrum, and the many strengths as well as challenges from having an autistic brain, promoted within society — and particularly targeted to early childhood educators and General Practitioners.
The demand for and adequacy of Commonwealth, state and local government services to meet the needs of autistic people at all life stages; and the adequacy and efficacy of the National Disability Insurance Scheme (NDIS) for autistic people
As noted above, we are at an early stage of understanding our son’s autism and in accessing supports. Through trial and error, being fortunate to have sufficient resources to move ahead of the NDIS, and living in a metropolitan location, we have found services and therapists who ‘get’ autism and our son. They are working with us to provide scaffolding for him to develop his strengths and potential, and address the challenges and barriers in a world not set up for autistics (or other people with disability).
| was appalled at the approach taken in ABA when reading about it, and seeing it in practice in two OT
sessions where | wasn’t aware they were applying it (it was marketed as a social skills process) - it’s
dehumanising, disrespectful, insulting and potentially harmful. In this respect, we agree with the Reframing Autism submission, and suggest that the NDIS should require warnings to be applied, to enable only full, informed consent to be given before using this method of intervention (ABA).
We have benefited greatly from the advice and support of autistic adults and professionals, and neurotypical allies who value and celebrate autism and aren’t trying to encourage autistic people to ‘pass’ or ‘mask’ as non-autistic. In particular, the work and advice of Allison Davies, Kristy Forbes and Jo Fokkes has been insightful and illuminating.
To date, our experience with the NDIS has been mostly positive — because it prioritises children under age 7 to maximise the chance of early intervention. However, if our son’s diagnosis had come later in time - which we understand is common for what was formerly diagnosed as Asperger’s Syndrome — we’re not confident that we would have had timely and responsive support through the NDIS. We had to wait around 3 months after first applying before developing a plan with the local area coordinator planner, and another month or two before funds were available. We prepared extensively, seeking reports from the services we had already engaged with — and paid for out of our own pocket — as well as reviewing advice from advocacy bodies and talking with other autism families. It was a very stressful time.
Thankfully, we were provided with the funds and supports sought, through a fairly straight forward process, and we’re self-managing which is going well. It’s not clear if this will be the case again for the second year though, and we’re concerned about the transition out of the Early Childhood Early Intervention Pathway support when our son turns 7.
However, we’re aware that other autism families have not been so fortunate. The NDIS experience seems to be highly variable, with inconsistent processes, wait times, decisions and funded supports largely dependent on:
- the resources of the family (including whether they can pay for therapists before NDIS funding)
- the location of their residence, and
- the luck of the draw in the allocation of planners. While there is a balance to be struck between an inflexible ‘one size fits all’ approach and separate tailoring to millions of individual needs, a universal support system should not be so wildly different – there should be greater consistency in applying the NDIS policies, and a minimum service standard met regardless of these factors (family resources and residence, and allocation of planners).
A significant gap in the NDIS funded-supports is for safe, quality respite for parents. In our experience and that of other autism families we know, even with a wonderful and supportive extended family and friends, and the strengths and riches that autism brings, it is exhausting and often stressful caring for an autistic child as a neurotypical adult. Research apparently confirms this, including that parents/carers of autistic children spend an average of 2 hours extra a day in parenting, to support their child to cope with the demands of a world that doesn’t cater to their needs.
Even with weekly assistance from my parents, tailored therapies, quality preschool and primary school, paid work and private regular psychologist support, I need more time ‘out’ than I get. With COVID-19, we have not had grandparent or other family members helping us to care for our son for 4 months, and we have not had a break in this time. With an autistic child, parents/carers do not draw on caring help from outside the family lightly. But we need more options for short breaks, to replenish our energy and take care of our health, and sustain us in caring. NDIS funding should extend to safe, quality, accessible respite services for parents/carers.
The interaction between services provided by the Commonwealth, state and local governments
With our son starting kindergarten this year, we approached our local mainstream public primary school 8 months ahead of his first day, to let them know we’d be attending and start a conversation about what supports and accommodation he might need. Disappointingly, before learning anything about our son beyond his being autistic, the Principal immediately said the local school might not be suitable and suggested we look into a separate autism support class in a different school. Over further conversations, after we’d done our own research about our son’s rights and the state Department of Education’s relevant policies, and identified how his autism might impact on the class and teacher, the position was reversed, and we assisted the school to seek funding from the state Department of Education for a few weekly hours of a teacher’s aide.
While waiting on an outcome from the teacher’s aide application, we asked the school and our NDIS planner whether we could use NDIS funding towards a teacher’s aide if the Department of Education wouldn’t fund this support – and were told no. This was a source of anxiety leading up to January 2020 as we weren’t sure how our son would cope with the mainstream classroom setting (ie the noise and stimulation) without a dedicated educator to assist. It also seemed strange that there couldn’t be an arrangement where NDIS funding could be used in this way, if this was within the original NDIS funding envelope for our son, and was a key support we and the planner agreed would best assist him at this time (transitioning to school, and assisting him to be part of the mainstream community). In the end, state government funding for teacher’s aide hours was approved, but we understand that his experienced classroom teacher hasn’t needed to draw on this very much as he’s settled into school well – even with the COVID-19 interruption.
However, we’re also aware from other autism families at the school that – again – their experience is highly variable, influenced by the age and autistic qualities of their child, and the understanding of the relevant classroom teacher. It has been difficult to obtain advice from the school about the specific supports and accommodations put in place for our children, and potential gaps, and there seems to be a tendency for ‘buck passing’ where convenient – where schools point to the Department or vice versa, and occasionally to the Commonwealth and NDIS. While education is clearly a state/territory responsibility, there should be scope for greater intersection and complementarity between public education and the NDIS. There is also an opportunity for the Commonwealth and state Education Departments to play a more proactive role in ensuring that minimum quality standards in education inclusion and ‘universal design for learning’ for children with disability are in place and met in practice, as is done with the National Quality Framework for early childhood education.
The social inclusion and participation of autistic people within the economy and community
We are fortunate to live in a welcoming and inclusive community, and have actively chosen to continue living here so that our son has friends, neighbours, teachers and other locals who know and appreciate him as he is. Part of this is due to the broader make-up of the locale – it includes a multitude of different cultural groups, there are active disability organisations here, and a local council that celebrates diversity. Even in this setting though, there are challenges in terms of inclusion in community activities for before/after school care and school holiday care. We appreciate that care for children outside school hours is a challenge for all working families, but this is exacerbated for autistic children for whom sensory overload, trouble with social communication and delays in processing information can make out of school hours (OOSH) options difficult. We have tried, and reluctantly ceased when it was clear these weren’t able to make adjustments for our son’s autism: after school care, music lessons, martial arts lessons and non-special needs babysitters. We are using a combination of annual and accumulated leave to try to cover the 12 weeks of school holidays but we don’t know what we will do next year. Any efforts that the Australian and state/territory governments can take to help generate and sustain a range of diverse extracurricular and out of school hours (OOSH) options for children and young people with autism would be positive. This should include enabling NDIS funding to cover support workers who can accompany autistic children to OOSH activities (eg mainstream school holiday activities).