Submission 62 — Name Withheld — Select Committee on Autism | External submission

Department of the Senate

PO Box 6100

Parliament House

Canberra ACT 2600

14 July 2020

Dear Committee Members

Thank you for the opportunity to give a submission on autism. For too long, this condition has not received the attention it deserves, particularly as it relates to girls. This submission represents my view and personal experiences as a mother of a 5 year old girl with autism.

My submission makes the following recommendations. These recommendations are not written or made in any particular order of priority. They are simply a summary of the recommendations from my submission.

Recommendation 1: That parents of a diagnosed child are eligible to receive a certain amount of Medicare funded sessions with a psychologist per calendar year. Currently, a person can have a Mental Health Plan that gives ten sessions only. That is not enough. There should be a certain amount of sessions provided per calendar year.

Recommendation 2: That specific and clear advice be included in the Blue Book about watching out for signs of autism, and when to know when to get help.

Recommendation 3: That autism assessment criteria be reviewed, with a view to updating criteria to include behaviours exhibited by girls and boys, noting there are differences between how the two genders present.

Recommendation 4: That medical practitioners be clearly informed about the prevalence of autism in both boys and girls, with a view to removing a preconception that it affects boys much more than girls.

Recommendation 5: That all children be screened by a speech pathologist before entering Reception.

Recommendation 6: Waiting times to see a paediatrician specialising in autism should be reduced. More doctors should be trained in this field, if it would

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reduce wait times. In Adelaide, there are only a handful of paediatricians able to provide a diagnosis, leading to unacceptably long wait times.

Recommendation 7: More funding be provided to researchers to find a fast, effective and accurate method of diagnosis.

Recommendation 8: Children with autism should receive free OSHC/childcare to enhance the social inclusion and participation of autistic people within the community and to allow parents to participate more fully in the economy.

Recommendation 9: That young adults on the spectrum have opportunities to develop their own small businesses, by way of small business grants, entrepreneurship mentoring and small business start-up courses delivered by appropriately trained providers.

A bit about me

I am a mother of two girls, aged five and three. In 2019, my eldest daughter was diagnosed with autism spectrum disorder with a rating of Level 2. This rating means she requires substantial support for her daily needs. With the right resources and significant amounts of “scaffolding”, she has been able to attend a mainstream school in a supportive setting.
I am an Asian Australian woman aged in her thirties. My parents arrived here as migrants decades ago with nothing but their youth and a suitcase full of dreams for a life they could not have from where they came from. They worked hard for everything they got. My parents, following the tried and true pathway of most migrants, wanted the best possible education for me. I diligently applied myself in high school and was rewarded by obtaining entry into the Adelaide Law School. Graduating with honours, I found employment in a highly regarded law firm and practised for a number of years.
My husband is a medical practitioner and when we started our family, I was a lawyer employed in a policy role. We contributed to society and led a typical middle class life. We were living the Australian dream. When we started our family, my husband and I were much the same as most other couples starting a family. We never really contemplated what would happen if we had a baby with special needs. We did what most parents do. We followed the advice of medical professionals before and during the pregnancy, and just hoped for the best, praying we would have a healthy baby. Working in the legal profession exposed me to high amounts of stress, discrimination, bullying and harassment. I went on maternity leave and put those experiences aside. I thought surely that would be the most stressful and traumatic experience of my life.

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Post-natal and “post-diagnosis” depression

In the legal profession, you are trained to prepare, prepare, prepare. The truth is that nothing can prepare you for a child with autism. Despite all of our skills, knowledge, training and expertise, both my husband and I were unprepared for having a child with special needs. The trauma, stress, fear, anger, grief, sadness and other feelings cannot be underestimated.
It had a tectonic impact on our family, our marriage and our livelihoods. When my daughter was still a newborn, it became apparent that a return to legal practice would be impossible. I did not know exactly how my daughter was different, but I knew in my heart she was not like other children. I concluded that if female lawyers with typical children were already struggling to manage their work, then what hope could I possibly have with a child like mine. The realisation that my legal career was effectively over, combined with week after week of sleepless nights, difficulty breastfeeding and a child that did not respond to affection nor show affection plunged me into a deep post-natal depression, a grieving for a life and career that would be no more, a paralysing anxiety of what my life would become in the coming years and a fear of what my daughter’s future would hold.
My husband also suffered. There was a delay in developing a bond with our daughter and a lack of affection from me. There are reports showing a divorce rate of up to 80% for couples who have a child with autism (although it should be noted the rate of 80% does not have consensus among researchers and there are differing views on what is the rate).1 The impact on the family unit and marriage is disproportionately profound in families with autism, when one considers the divorce rate in the general population to be between 40-50%.
After a day of failed breastfeeding, no conversation and a baby that will not cuddle you or settle, there is nothing left for my husband. It has been reported that autism has a greater detrimental impact on the wellbeing of the family unit as compared to other disabilities.2 This is because of the way autism expresses itself compared to other disabilities: a child not showing outward affection, displaying peculiar and challenging behaviours that are not tolerated or accepted by the community or extended family brings about enormous stress on the parents. Families with children of other disabilities also face their unique challenges, but families with autistic children appear to have a high divorce rate.

1 Kidspot, ‘The sad truth for parents of children with autism’ 19 July 2017 https://www.kidspot.com.au/parenting/parenthood/divorce-and-separation/the-sad-truth-for-parents-of-children-with-autism/news-story/44b643715957ac3daecfb622b9553777 2 Kate Wallis and Stefanie Jackson, Children’s Hospital of Philadelphia, 15 November 2018 https://policylab.chop.edu/blog/depression-parents-children-developmental-disabilities-what-do-we-know-and-what-can-we-do

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My husband and I try to have dinner out together (without the children) at least once a month, to give us time together. We also try to maintain some of our own hobbies and interests from before we had children. I recognise that not all parents have this available to them, and some parents get no respite at all. Parents should be given more support on how to help each other better so they family unit can function better as a whole.
When a child is diagnosed with autism, the child is eligible to receive up to 15 Medicare funded sessions with a psychologist under a Medicare plan. Funding for a psychologist may also be available to the child through NDIS. There is nothing for the parents. There is virtually no support for parents whose lives have been changed forever, their mental health and wellbeing can sit on a precipice from day to day. The reaction to a new diagnosis of autism has been equated to a grieving process similar to having lost a child, which can increase depressive symptoms. The Australian Bureau of Statistics estimates the prevalence of autism in Australia at 1 in 1503 but other sources estimate the prevalence at 1 in 70.4 With such high prevalence, there are many parents suffering in isolation and silence.
Following a diagnosis, parents are invited to attend a free Early Days workshop. The workshop is helpful but it is entirely centred on the child. There is nothing provided to support the wellbeing of parents. Nobody asks “Are you okay? How are you coping?”
It is important that parents have a confidential avenue for discussing their concerns, feelings and other issues. After we received the diagnosis, we were very fearful of the reaction we would get from family and friends. Regrettably our fears were entirely founded. There are many widely held misconceptions and negative views of autism in the community. Those who you think you can rely on may turn out to have a very negative view of autism that you were previously unaware of. Then there are well-meaning friends and family who may try and downplay the child’s diagnosis as “weirdness” or advise “just wait and see”. They make you feel worse because by downplaying the diagnosis, they are not taking you or your child seriously. Receiving a diagnosis completely changed our social circle. There are some people we have not seen (or barely seen) since her diagnosis. One of the positives of a diagnosis is that overnight it sorts out those you can count on, and those you can’t. We are very careful of disclosing her condition to anyone. The discrimination is real and in your face.

3 Australian Institute of Health and Welfare, ‘Autism in Australia’, 5 April 2017 https://www.aihw.gov.au/reports/disability/autism-in-australia/contents/autism 4 Autism Spectrum Australia, ‘Autism prevalence rate up by an estimated 40% to 1 in 70 people’, 11 July 2018 https://www.autismspectrum.org.au/news/autism-prevalence-rate-up-by-an-estimated-40-to-1-in-70-people-11-07-2018

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In some cultures, it is still taboo to discuss disability and the impact it has on the family, particularly a disability like autism. This makes it hard to discuss autism with family and friends especially if you come from a culturally diverse background, where attitudes of disability can be associated with shame on a family and a fear of difference.

The barriers to diagnosis and not knowing what to look for

In hindsight, in the early years there were many signs my daughter had autism:

 Difficult to settle and sleep  Made little or no eye contact, even when being fed with breast or bottle  Showed little affection, does not respond to cuddling, does not reach out to be picked up  Speech delay, speaks in monotone when she does talk  Difficulty self-feeding and using cutlery, could not point using index finger  Did not notice or care if I had hurt myself, was crying or experiencing discomfort  Could not read or understand facial expressions, did not try to imitate faces  Spending a lot of time playing repetitively with household objects but not toys

Taking each one of those observations alone, you would not conclude a child has autism. But when considered together, there were red flags that she may have autism. Being my first child, it was hard to know what to expect, hard to know what is typical and what is not. Similar to many mothers in South Australia, I referred to the “Blue Book” for initial advice on my child’s development. The Blue Book is a health and development record issued to all babies upon birth from the government. There is an important section on milestones and development. You can tick off each milestone that your child has completed. Most of the milestones relate to physical development rather than social development. This means that, on paper, my daughter was mostly meeting her milestones and nobody thought there was anything of concern about her. This “tick box” exercise gave me false comfort that my daughter was doing fine when in fact we should have seen a specialist much sooner. The internet is full of misinformation about autism. It is up to the government to provide some clear information about autism to parents, many of them first

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time parents who will not know what to watch out for and when to seek help. The Blue Book is a good place to start for the government to fill this void with factual and clear information about what is autism. (This is distinct from the causes of autism, which is not part of this inquiry).

Recommendation 2: That specific and clear advice be included in the Blue Book about watching out for signs of autism, and when to know when to get help.

The Blue Book has advice regarding hearing, sight, growth and other developmental areas but nothing for autism. Knowing what we know about the importance of early intervention and the crucial difference it makes to the child’s outcomes in later life, it is vital that parents are given clear no nonsense information on the signs to watch out for, so they can see a medical professional as soon as possible, when the early years count for so much. I have regret for every month that we did not seek help because we did not know we needed help. If we had known to see someone sooner, we would have started our journey to a diagnosis sooner, and got her the help she needs sooner. I acknowledge that every child with autism is different and the condition can present very differently, from child to child. However, there are characteristics and features that are common to all children diagnosed with autism.

Under representation of females in autism data, and gender bias in autism assessment and support services

My motherly instincts told me there was something inherently different about my daughter. I could not pinpoint what that difference was but I knew it was there. At her periodic check-ups, I would mention things like her not talking very much, not being able to hold a fork and spoon very well and not seeming very playful. My concerns were routinely dismissed by anyone I mentioned them to, including medical practitioners, nurses, carers, teachers, early childhood educators, family and friends:

 “It’s okay if there is a bit of delay. Just wait and see. She’ll catch up.”  “Lots of girls are shy.”  “It’s common for children of bi-lingual backgrounds to have some speech delay. They’re learning two languages after all.”  “Most kids prefer to eat with their hands.”  “She is just eccentric and nerdy.”

I felt that my concerns were not being taken seriously because of misconceptions surrounding autism and the notion that it mostly affects boys, not girls. Many of my daughter’s behaviours were put down to shyness. This would not have happened if she were born a boy. Sometimes her cultural

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background was used as an excuse, as she is learning two languages at once and a misconception that Asian little girls are often shy.

Things changed when my daughter had a routine speech pathology assessment at the Early Learning Centre she attended. All children were screened by a speech pathologist and this was the first time her behaviours and delayed development was laid out for all to see, in a clear and unambiguous manner. The speech pathologist discussed the screening results with us and suggested further assessment to see if she might have autism. It was a life changing meeting. I finally had something in writing to take to a specialist and get taken seriously. That meeting was the start of our journey to a diagnosis that would last over six months.
We send our daughter to a private school that has been very supportive of our daughter’s journey from the beginning. While still pregnant, we had selected this school, with the same hopes our own parents had about giving our daughter the best education possible. We never contemplated this is the pathway we would be taking. I recognise that not all families have this experience and we are just lucky we happened to find ourselves in a supportive school. The school’s ELC screens every child by a speech pathologist, occupational therapist, audiologist and optometrist before the child enters Reception. The speech pathologist does an additional earlier screening in the ELC. I was very grateful for this process because it kick started the journey to a diagnosis and gave us a plan for moving forward. It is entirely possible our daughter would still be undiagnosed if it were not for the intervention of the speech pathologist and the allied screening services provided by her school.
Most children do not attend a school that has these sorts of resources in place. Girls, in particular, are at much higher risk of being missed because their behaviours, generally speaking, tend not to be as outwardly aggressive or challenging as boys. Their behaviour can easily be dismissed as shyness and the girl continues playing alone in the corner, missing out on early intervention while the boy is detected instead.

Recommendation 5: That all children be screened by a speech pathologist before entering Reception.

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The long journey to a diagnosis

21.An autism diagnosis can only be made together by a paediatrician and speech pathologist. We were fortunate to already be acquainted with a specialist autism paediatrician and we have private health insurance. This meant our waiting time to see the paediatrician was reduced. Even with these distinct advantages, it still took us approximately six months to receive a

diagnosis for our daughter. | acknowledge that, for some parents, the journey

towards accepting that a child should be assessed for autism, progressing to receiving and accepting a diagnosis is a long one that can take years. For other parents, the journey is shorter and they may be more willing and prepared to acknowledge a diagnosis should occur. This length of time should be shortened, for those parents who are ready to receive a diagnosis. We were told to be grateful that it only took around 6 months. This was a critical year in her development. She was 4 years old at the time of her diagnosis. If we had been able to receive a diagnosis quicker, we could have applied for the NDIS sooner and kick started her therapies much sooner.

It is much worse for those who are not privately insured and must wait in the public system. At the time of writing, there was a waiting time of between 14 18 months at the Women’s and Children’s Hospital in Adelaide.® This is unacceptably long and must be reduced. The waiting time is so long that some children may be missing out on early intervention therapies at the exact time it would have the most impact.
The difference between the public and private health system is poles apart especially for autism. There will probably be profound differences in outcomes for children who do not have access to timely specialist medical help, what some have referred to as a “developmental apartheid”.® That is not acceptable for a first world country like Australia.

24.Autism Spectrum Australia (Aspect) estimated there are 1 in 70 people in Australia on the autism spectrum.’ With such a high prevalence of autism in the community, we need to develop faster ways of diagnosing the condition so children can get help faster. There are other conditions with similar or lower rates of prevalence but with much faster diagnosis time. The community would never tolerate a diagnosis waiting time of between 14-18 months for, say, Type 1 diabetes in children or childhood cancers. Yet this waiting period

5 Women’s and Children’s Hospital Child Development Unit as at 22 April 2020 http://www.wch.sa.gov.au/services/az/other/allied/childdev/index.html#:~:text=Waiting%20Times,receive%20correspondence%20from%20the%20CDU.

§ Stephanie Dalzell and Michael McKinnon, “Children’s access to disability funding depending on where they live dubbed ’developmental apartheid” https://www.abc.net.au/news/2020-02-13/childrens-access-to-disability-funding-depends-on-their-suburbs/11917466 published 13 February 2020

7 https://www.autismspectrum.org.au/news/autism-prevalence-rate-up-by-an-estimated-40-to-1-in-70-people-11-07-2018

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of between 14-18 months and perhaps longer is tolerated for autism. The complexities of diagnosing autism should not be a deterrent for finding faster ways to diagnose it. More funding could be directed to researchers to find a faster way of diagnosing autism.

Recommendation 6: Waiting times to see a paediatrician specialising this field should be reduced. More doctors should be trained in this field, if it would reduce wait times. In Adelaide, there are only a handful of paediatricians able to provide a diagnosis, leading to unacceptably long wait times.

Recommendation 7: More funding be provided to researchers to find a fast, effective and accurate method of diagnosis.

Enhancing social inclusion and practising social skills

Our daughter is constantly reminded by everyone around her to improve her social skills. She receives speech pathology and occupational therapy on a weekly basis. The therapies are very valuable and we have seen firsthand the difference that early intervention makes. We feel the success of her early interventions have empowered her to remain in a mainstream school and have a successful start to her schooling.
But no matter how much time she spends with the speech therapist and OT, it is simply not the same as spending time with other children of her age, and to practise her social skills with other children.
During the school holidays, we try to give our daughter opportunities to play with other children and make friends by sending her to OSHC. In the absence of playdates, team sports and other activities that typical children would attend, OSHC gives her the social inclusion she needs.
This also allows me to work through the holidays. I currently work in the real estate industry. I was fortunate to re-enter the workforce on a part-time basis with the support of a sympathetic employer that has some understanding of autism. That understanding allows me to take time off at very short notice to assist my daughter, allows me to work from home whenever I want, and offers the flexibility we need as a family unit to give our daughter the support she requires. This type of arrangement could not have been contemplated if I had stayed in the legal profession.
Childcare and OSHC became free during the COVID-19 pandemic. The waiving of all fees had a dramatic impact on my ability to participate in the economy. I was able to participate more fully in the economy. The increase in income (from not having to pay childcare and OSHC) directly helps our

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daughter by providing more funds for her therapies. Taking away the free OSHC and childcare has a direct economic cost.

Recommendation 8: Children with autism should receive free OSHC and childcare to enhance the social inclusion and participation of autistic people within the community and to allow parents to participate more fully in the economy.

Pathways to self-employment and entrepreneurship

Adults on the spectrum have very high levels of unemployment with estimates of around 31.6%.° It is difficult for them to find a job and then keep that job due to a variety factors such as sensory considerations, lack of flexible hours and insufficient clarity around roles and expectations. There are reports of high rates of attrition.

31.My husband and | are not blind to the hurdles my daughter will face when she

grows up. We have real fears of what the workforce will look like for her and how unwelcoming it will be. There may be some employers talking platitudes of diversity but very few real opportunities of meaningful employment and even fewer workplaces with a strategy in place for retention, training and growth for a person on the spectrum.

32.Our daughter will have to smash her way through a TRIPLE LAYERED CEILING. First, she is female. Second, she is Asian. Third, she is on the

autism spectrum. The discrimination is real and she will have to deal with it. |

had a double layered ceiling (glass and bamboo) and that was difficult

enough. | was never able to smash that double layered ceiling, despite my

years of training, qualifications and experience. But our daughter has a triple layered ceiling. There are serious odds against her. More than half of unemployed autistic Australians (53.9 per cent) have never held a paid job, despite often possessing the skills, qualifications and a strong desire to join the workforce.? Our daughter will need lots of assistance, mentoring and the right opportunities to find a meaningful place in the workforce, and become a productive and contributing member of our economy.

33.My daughter was described by the medical professionals as “high functioning”. Despite reading countless books on autism, it is still unclear to

me precisely what “high functioning” means. Putting that aside, | do know she

is highly intelligent, has an excellent memory and has a streak of creativity

that is wonderful to see. | have high hopes, dreams and expectations for her. |

want her to succeed in whatever field she chooses to pursue. Her autism

8 Amaze Australia, ‘Autism and employment: Australia has work to do’ https://(www.amaze.org.au/2019/03/employment-research/ 28 March 2019 9 Ibid

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should not be used as an excuse for an impediment to success. If anything, those characteristics that put her on the spectrum should be the same characteristics that help her succeed. Regrettably, most workplaces will not see it this way. They will probably try to mould her into something she is not, and because she is “high functioning”, they will expect her to understand and comply with the innumerable office etiquettes, rules, policies and procedures, some spoken but many unspoken. Despite her “high functioning” autism, she will have great difficulty grasping these social norms and rules, many of which are unspoken but an expectation that all employees understand.

My husband and I concluded it may be better to encourage her into self- employment, help her create a small business that could eventually give her sufficient income. That would be an easier pathway to success, rather than trying to break through the triple layered ceiling we discussed earlier. She will still encounter lots of challenges in establishing a small business, but those challenges and hurdles would be more likely due to her efforts and pursuits of entrepreneurship, rather than some kind of discrimination of her gender, race and disability that would be totally out of her control.

Thank you kindly for giving our family the opportunity to make a submission. We would welcome an opportunity to appear at a hearing to further discuss or clarify any matters raised in this submission.

NAME WITHHELD

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