Department of the Senate
PO Box 6100
Parliament House
Canberra ACT 2600
Dear Members of the Senate Select Committee on Autism,
Re: Inquiry into the services, supports and life outcomes for autistic people in Australia
I am the mother of a seven year old son on the autism spectrum. I do not wish to be named in my statement to ensure the privacy of my son, who I feel should be the one to announce his diagnosis publicly, if and when he chooses to as an adult.
I’ve attempted to write a thorough statement outlining my experiences as a parent of a young autistic child. However, I’ve had to rush and write it in one evening as I only found out about the inquiry on the 16th of July, the day before the submission deadline. I also noted, that despite a three month extension, that only 44 submissions had been received. This is probably a good place to start with suggestions to improve the experiences for the autism community. Australia lacks a consistent central voice for disseminating important information regarding autism.
COMMUNICATION
In the four years since my sons’ diagnosis, I’ve had a steep learning curve. To educate myself to be the best advocate I can for my son, I’ve joined several parent support groups, both face to face and online. I’ve learned about education options, therapy services, school holiday programs, how to access funding, as well as what funding options I’m eligible for. I’ve been lucky, I found a group of Mum’s who have been willing to help me. But the process has been time and energy consuming. Time and energy being resources that are very precious to a special needs parent. I’ve also found out about funding and programs that would have been immensely beneficial to me and my family, but several years too late.
It concerns me that there are families in the autism community who live in regional areas, who perhaps don’t speak English as a first language or who miss out on finding a village to support them as an Autism parent because they aren’t as skilled at seeking out a support network. This is especially pertinent to Autism parents who may also be on the spectrum themselves.
I understand that there have been systems in place to provide this service. But in my experience, the Local Area Coordinators (Disability Services Commission) and NDIS plan managers have not provided me with sufficient information. The Autism Advisory service only meets with families on one occasion and it’s usually immediately after a diagnosis at a time when parents are emotional and experiencing information overload. It’s not acceptable that I need to seek out
other parents for information, when there are individuals who are employed to provide this service. Government employees who are representing the Disability sector need to be better educated about what’s available to people with autism, and they need smaller caseloads to allow for more thorough assessments and time to pass on the appropriate information to their clients. Smaller caseloads would also enable more frequent reviews. The assistance my son required six months ago, isn’t always what he needs today.
When I was going through the diagnostic process with my son, I referenced the Raising Children Network webpage as it had a section on Autism. There is so much misinformation about autism online, and I really valued this website because the information was evidence-based and reliable. It helped me separate the useful advice, from the reckless and potentially dangerous information. Particularly the database of therapies that outlines the science (or lack thereof) behind it. I feel this could be expanded to its own webpage. Many of us struggle to find trustworthy information regarding education, healthcare, employment, housing, justice and rights for people with autism. I would recommend that it be state-specific. I have received inconsistent information when I’ve called the NDIS phone number, because I often end up speaking to staff outside of Western Australia.
Developmental Disability WA is a not for profit organisation that created a booklet to help parents locate services in Western Australia. It’s called the Autism Parents Handbook. It’s an excellent resource, however I feel that it could be expanded upon at the government level. I would recommend the Members of the Senate Select Committee on Autism read the handbook and consider it a template for what could be possible as a broader resource.
In the past, when I have found out about research into policy and how I can participate, it has never been through official channels. Rather, I’ve read about a questionnaire, or this inquiry for example, on a Facebook group discussion page or in an email from a support group I attend. As the government already has a database of the Australian residents who have autism and their carers, perhaps we could have been notified about this inquiry via the Mygov channel or a letter. This may have yielded a better response rate.
DIAGNOSIS
Prior to becoming a mother, I studied Psychology and spent two years working with children who were on the Autism spectrum. Thanks to this experience, I identified that my son exhibited many red flags for Autism from 12 months of age, including not pointing, restricted interest in toys, limited eye contact, no vocalising and not making or responding to my gestures. Despite my background, my concerns were repeatedly dismissed by doctors, specialists and paediatricians. The local child health nurse was the only person who took my concerns seriously, and she made a referral for the Child Development Service. But the waitlist to access the service was over 12 months long. After two years of taking my son to appointments with my concerns, he was eventually diagnosed with Autism Spectrum Disorder Level 2, at three years of age.
In my experience there was a ‘wait and see’ approach to diagnosing Autism. Evidence based practice indicates that the earlier that children commence intervention services, the better they fare. I believe we need a two-pronged approach. There needs to be better education with GP’s, child health nurses and paediatricians of the early indicators of Autism, including infants and toddlers. Autism is a neurological condition that exists from birth, and there is research that indicates we can diagnose children much earlier than is typical in Australia. This information needs to be spread to the broader health care community. My experience was not unique. In support groups, parents often say, getting the diagnosis is one of the most challenging parts of having a child with autism. It is also important to acknowledge that most parents would not have had the knowledge about Autism that I had, and therefore would have had to rely on another person identifying the early indicators, such as child care workers, child health nurses or GP’s.
Secondly, I would recommend that all children, regardless of diagnosis, receive services if they are not meeting milestones. We need to address the developmental delay, not wait for a diagnosis. In my sons’ case, there was the potential for him to access services two years before he received a formal diagnosis. Two years in the scope of early intervention, is significant. Lengthy waitlists to access services is an opportunity missed.
When we eventually had a place at the Child Development Service it was another 6 months before a referral was made for a diagnostic assessment, which had its own waitlist of 6-9 months. Unrealistic wait times drove us to have a private assessment at significant expense.
There is a need for more qualified clinicians to diagnose and provide therapy for people with autism, to reduce waitlists. I appreciate that this will come at an expense to the government. However, autism exists, whether it is diagnosed or not. My hope is that by providing greater supports to children and young people in our community with autism, that this will beget greater independence in the long term and less dependence on welfare, health care services and supported housing in adulthood. An autistic child who has benefited from sufficient early intervention is more likely to reach their full potential and become healthy, functioning, contributing members of society.
NDIS / FUNDING
The funding we have received over the past four years has been insufficient to meet my son’s needs and we have bridged the gap privately, at significant expense. There have been flow-on effects as a result of this decision. Prior to the autism diagnosis, we had hoped to purchase a family home. Four years on, we are still renting. He is now established in schools and services that are dictated by catchment areas. Therefore in order to provide stability, we are restricted to certain suburbs, when we eventually do purchase a home as consistency is a more important consideration for a child with autism.
Despite the NDIS officially rolling out in my suburb over two years ago, we are yet to have a plan meeting. We are currently on our third interim plan. When a minor administration error was made on the second plan, it was extremely difficult and time consuming to correct. It took six weeks to amend and during this time I was required to pay for therapy privately.
Respite is a dirty word in the NDIS and disability sector and families have been advised not to ask for respite or support. I have been advised that I cannot expect to get support for circumstances that would be reasonable for all parents. Unfortunately, this minimises the experience of parenting a special needs child. All parents take their children to activities, supervise and assist in their daily living. Special needs parents are carers, advocates and personal assistants to their child in addition to all other parenting responsibilities. Our children often take significantly longer to learn basic skills such as toilet training, road safety and stranger danger. My son was not toilet trained until he was seven. He regularly sleeps less than 5 hours a night and hasn’t napped since he was twelve months. He is still learning to dress himself, drink out of a cup, use cutlery and extend his diet beyond a limited range of food. All parents deal with challenging behaviours such as temper tantrums. Special needs parents manage meltdowns that can last for hours and become violent and place other family members at risk of harm. Parents who are supported and have access to some down time are better equipped to deal with the additional challenges of raising a special needs child, and ensure that siblings needs aren’t overlooked.
My extended family live four hours away, and my husband travels frequently for work. When my second child was born, I struggled to meet the needs of my two children. I rarely slept more than a few hours a night for several years, I had to spend a lot of time in the car to ensure my son attended a suitable school and his appointments, and I had a new baby who was left to cry while I managed meltdowns. It was a dangerous position to be in, it was also unnecessary. Having access to support workers or respite could have really helped me during a very difficult time. I was told that there was no money available in my area for support workers. My responsibilities as a parent were significantly different to mothers of neurotypical children. My son went to an education support school for two years that was 15kms away from my home. This meant 60kms and 2 and a half hours driving on school days. Special needs parents often have to travel great distances to access therapy and specialised hobbies, they don’t join the local sports team.
I have been unable to return to the workforce because raising a child with autism requires more time, energy and, for want of a better word, administration. I spend a lot of time taking my son to and from appointments, liaising with health professionals, educating myself about autism, learning about the NDIS and participating in research that will improve the quality of life for the autism community. And participating in forums, like this inquiry. I am happy to do this. But I mention it to paint a picture of the financial and time sacrifices that families of children with autism make.
Many parents, usually mothers take significant time out of the workforce to raise a child with autism. There is also a dramatically higher divorce rate for parents of children with autism. Mothers of children with autism are at risk of poverty as they are unable to work for long stretches of time, lose traction in their careers and don’t contribute to their superannuation. I propose that people who take time away from work to carer for someone with a disability, receive super contributions from the government.
I ask that the committee consider the family as a whole when making policy decisions regarding funding, respite and support workers, not just the needs of the child. If the parents and family unit are functioning well, they are better equipped to make better choices for their autistic child.
EDUCATION
My son has asynchronous development, this means that he has developmental delays that are approximately two years behind, but he also has academic needs that are two years above his age level. Both issues affect his behaviour, and both issues need to be accommodated in school. However, I have found there is a tendency to focus only on his deficits, not his skills. The school provides an EA to support his impulsivity and inattention, but he has not been given work that challenges him. Consequently, he is a bright child, who is not learning anything new. He is also not learning to cope with challenge and failing. He already has anxiety around perfectionism that is being treated by a Clinical Psychologist and I have concerns that in the years to come this will become more problematic if it is not addressed in the classroom.
Asynchronous development is common with many people with autism and I believe that if it were a bigger focus in the school environment it will better prepare young people for schooling in high school and tertiary institutions, as well as employment. Please focus on the strengths and abilities of young people with autism. They need opportunities to learn grit, determination and how to cope with failure. There is danger in over-estimating people with autism, under estimating is just as problematic but doesn’t get the same attention.
My son has been attending the local primary school for the past year and a half. He is bullied in the playground and has never been invited on a playdate. His social needs have not been supported at school. He has been punched in the playground several times and been unable locate a teacher on duty. While he has an EA in class, there is rarely an EA in the playground and the teachers on duty rove around the school. As issues with social skills is a primary feature of autism, I feel that policy around managing social skills in school should be a priority. The playground environment is the perfect place for autistic children to learn important social skills such as turn taking, conflict resolution and flexibility with play. However, without guidance, this will not happen naturally. This is an opportunity to teach life skills that could significantly improve the quality of life for people with autism.
HEALTHCARE
Whilst healthcare was not an issue that you were planning to address in your inquiry directly. I raise it because autism rarely happens in a vacuum. People with autism often have a whole host of other health related issues. As previously mentioned, we’ve encountered waitlists several years long. Last month I received a letter from hospital asking if we still required an appointment for a referral that was made in 2017. I had to call to find out what it was for because it had been so long. Waitlists are often so unmanageable that it forces parents to pay for private appointments while they are already dealing with the expenses of things that are directly related to autism. Some of the additional health issues we have encountered that aren’t directly related to autism are digestive and gut problems, restricted diet and nutrient deficiencies, delay in toileting, sleep issues, dental problems, eye squint, congenital birth defects, ADHD and anxiety.
Please consider that people with autism have additional health care requirements and allow for them in NDIS funding. Health issues in the autism community are greater than the general population and should be accounted for.
I thank you for taking the time to read my contribution to this inquiry. Please do not hesitate to contact me if you wish to discuss any of these points further.