Submission 81 — Name Withheld — Select Committee on Autism

Submission to Select Committee on Autism

My 10 year old son was diagnosed last year with Autism Spectrum Disorder, Generalised Anxiety

Disorder, Oppositional Defiance Disorder, Sensory Processing Disorder and Attention Deficit

Hyperactivity Disorder. He also has an extremely high IQ and is gifted in maths, science, and art. I’m a working single parent with no family. It has taken 8 years to obtain a diagnosis for my son.

Empirical evidence demonstrates that early intervention delivers better outcomes for Autistic people, their families and their communities. Yet it is enormously difficult to access.

While he displayed what I felt might be the characteristics of Autism Spectrum Disorder when he was a toddler, obtaining a diagnosis and support for him has been extremely challenging and has taken a number of years due to under resourced public health services, a lack of awareness of autism amongst health practitioners, very long waiting lists, and financial constraints. I first saw my son’s then GP and a child clinical psychologist regarding diagnosis when my son was about to turn three. I tried again at 5. Over the years I tried many times to access support.

None of the professionals I saw at the time had an adequate understanding of Autism Spectrum Disorder. I was told such things as “It is a cry for attention because he comes from a broken home”, “It is trauma because his parents are separated”, “He doesn’t look autistic”, “Try a parenting class”, “It is an attachment issue - he wouldn’t act this way if you were a full time stay at home mother”, “He will grow out of it if you discipline him more”, “We are all a bit autistic”, “There is no money for help even if he does get a diagnosis”, and “You don’t want to burden him with an unnecessary label”.

These were all comments from professionals. As such they were very damaging.

I was not able to access a school psychologist because my son’s behaviour was “not a big enough problem” at school. The public developmental paediatric clinic was not accessible due to the years long waitlist. I tried many avenues to seek help for my son. For example, my son had a speech delay. When I put him on the local public speech pathologist wait list at four, the waitlist was more than 18 months. The wait list for a diagnosis through the public system was even longer than that. As a result, he did not receive any early intervention. This has undoubtedly had a detrimental effect on him.

Last year, I reached breaking point, and gave up on the public health system because my son desperately needed more support than I could provide alone, and I sought a diagnosis privately.

Fortunately, I finally found a wonderful GP who knows that Autism is not caused by ‘poor parenting’ who was able to refer my son to the appropriate people.

Even that took more than 11 months, with local developmental paediatricians, and developmental clinical psychologists having extremely long wait times. So far the diagnostic process has cost me

more than $6500 dollars, not including the therapy I’m paying for privately. I’m now trying to access ongoing interventions for my son such as psychology, occupational therapy and social skills groups. Psychology sessions are around $190 per session, and OT assistants around $80 per week, and the social skills group recommended by the paediatrician runs to around $2600 session. These groups are not covered by Medicare, and I simply cannot afford them as a working single parent.

Because of this, in December last year I commenced the process of seeking access to the NDIS. I spent another four months seeking out and paying for the reports needed for this process, while my son struggled with his disability. While supporting my son feels emotionally like a valid reason for me to go into debt, it is enormously stressful, and is an added burden to the already enormous challenges of parenting a child with a disability by myself.

A couple of weeks ago, my son was accepted into the NDIS, and I just had the first planning meeting. Disappointingly, the NDIS process has been very traumatising and dehumanising. Despite having provided letters from my son’s specialist doctors, therapist reports, and quotes (OT, psychology, speech, the social skills group etc) for therapies his team had determined were required for his disabilities, the amount my son was funded for was $1800 dollars less than the quote for OT alone.

Now I’m at the point of having to appeal, and having to go back to the GP, paediatrician, OT, and psychologist and pay hundreds of dollars more out of my own pocket for additional reports. This has all taken away from the time that I could be actively supporting my son. The stigma, stress, and worry in trying to navigate the NDIS while being a working single parent has been enormous. This has been very damaging to my wellbeing and mental health.

It should not take an enormous amount of money and 8 years of fighting to obtain help for a child with developmental disability.

Australia is systemically failing Autistic children and their families, not only in terms of access to health care and disability support, but in terms of equitable access to education and the reasonable accommodations neuro-diverse children need to succeed.

For example, I have been struggling to get an Individual Learning plan in place at school for my son since October last year when I provided the ASD diagnosis and Psychologist’s recommendations. It is July, and he does not yet have one in place. The needed accommodations are not being made at school, and this is severely impacting my son. The school appears to have excellent intentions, but skill and resourcing barriers prevent them being able to act efficiently or effectively to support Autistic children to the extent required. It is very clear that my son’s teachers do not have an adequate understanding of developmental disability such as ASD, and that they are not adequately trained, resourced or supported to teach neuro-diverse children. Equally clear is that they are particularly under resourced to teach gifted or “twice exceptional” Autistic children. The personal, family, societal, and economic cost of letting these children fall through the gaps is very high. We need to do better.

I write this submission with the hope that not only will it ensure a brighter future for my son, but that it will make access to diagnosis and support for thousands of other children easier, and ensure better support for their parents, carers, and teachers. Autistic people have an enormous amount to contribute to this country but they need to be adequately supported in order to do so.

Please find some recommendations below based on our lived experience:

Improve Access to Diagnosis and Support for Autism Spectrum Disorder

The path to diagnosis is complex and opaque. It is very expensive. It is highly dependent on finding and being able to access a knowledgeable clinician. Many GPs, paediatricians, allied health practitioners and psychologists do not have an adequate modern understanding of Autism, and cannot adequately identify it, particularly for children with ASD1. Families bounce from GP, to paediatrician, to psychologist, to occupational therapist, to speech pathologist etc. There are extraordinarily long wait times to access practitioners such as psychologists and paediatricians who can diagnose ASD in both the public system and the private system. We need to make access to diagnosis easier, particularly for disadvantaged families. Assessments are not sufficiently funded under Medicare.

Overly complex combinations of Carer Allowance or Payment, Mental Health Care Plan, Chronic

Disease Management Plans, and the NDIS make it extremely hard and time consuming for families to access support.

The NDIS is overly cumbersome and confusing to access. Determining and demonstrating eligibility is a difficult, burdensome, and stressful process. The NDIS utilises DSM-5 Levels 2 and 3 as conditions by which children and adult autistic people are likely to meet access requirements to the NDIS. However, the DSM-5 explicitly states that the severity levels should not be used to determine eligibility for funding or services. This approach does not adequately take into consideration other co-morbid diagnoses. The issue with utilising the DSM-5 autism diagnostic levels is that it is a subjective professional assessment that can change between assessors, particularly where disadvantaged families who cannot advocate adequately for their children are concerned.

Recommendations:

Diagnosis

1. Clear, affordable, transparent, and well publicised pathways to diagnosis need to be implemented urgently.

2. Access to diagnostic referrals through the school system and GPs needs to be improved.

3. Comprehensive modern professional development needs to be provided to GPs, allied health practitioners, and psychologists to improve diagnosis and access to early intervention.

4. The high costs of diagnosis need to be addressed. There is an urgent need to review Medicare items to ensure they cover the full costs of autism assessment and diagnosis for children and adults, as well as cognitive assessments for autistic people. Financial support

5. Financial support for families with Autistic children, and other disabilities, needs to streamlined into a single process, with one point of application.

NDIS

6. It is important to create an ASD/ developmental disability stream within the NDIS to build expertise and capacity.

7. Establish requirements to ensure that local area coordinators are adequately skilled and qualified to undertake planning for clients with ASD.

8. Simplify and increase the transparency of the NDIS process to deliver better planning outcomes for autistic people and their families. Review the use of the DSM-5 level to determine eligibility for the NDIS. Publish evidence-based, transparent, equitable, and accessible NDIS eligibility criteria for autistic people.

9. Publish transparent guides to NDIS planning for carers of people with Autism that clearly identifies what sort of goals will be supported and what typed of therapy and other support will be funded.

10. Review the real costs of supporting someone with Autism and other comorbid diagnoses, and ensure that the quanta of NDIS funding allocated aligns with these costs. Mental health

11. Autistic children need better and more timely and affordable access to mental health support. Access to funding for mental health support needs to be streamlined.

Improve Access to Education for people on the Autism Spectrum ABS statistics indicates that 34.7 per cent of autistic students only achieve Year 10 or lower, compared with 17.8 per cent of students without a disability. Further, only 6.5 per cent of autistic students have a bachelor’s or higher degree, compared with 28.7 per cent of students without a disability. Autistic students experience a number of serious barriers to education. These include mainstream teachers who don’t have the time, skills, and resources to effectively teach students, or to manage the behaviour of Autistic students. This is particularly true of twice exceptional students who in combination with the challenges resulting from ASD also have gifts and talents that need to be supported. Often ASD1 children in mainstream schools find it almost impossible to get any support at school, in comparison to their ASD2/3 peers. ASD1 children are disabled and they struggle enormously in school. Intellectual disability is not the only barrier to successfully obtaining an education.

Children with ASD experience a horrific level of bullying and ostracism by their peers. The resulting behaviours are difficult for schools to manage, and many children end up suspended and excluded by schools. Others develop school avoidance so severe that their parents are forced to home school them, even though that is not the child or parent’s preference. Autistic students should have access to an education system that provides an inclusive culture. Autistic students need an individualised, needs-based approach to learning that is tailored to their strengths and unique learning styles.

Recommendations

1. Programs such as the Autism Spectrum Australia, the AutismCRC, Positive Partnerships and InclusionEd are essential resources and make a huge difference to people with Autism and their families, and should be expanded. Local organisations, such as the ACT’s Marymeade Autism Centre, should also be funded at a sufficient level to ensure they meet the needs of their communities.

2. Implement a national professional development package to educate all school leaders and teachers about Autism, and to provide them with the evidence based skill set to effectively teach Autistic students.

3. Adequately resource schools to provide the learning and social support needed for all ASD students, including those who are ASD1, and those who are twice exceptional. Fund additional mainstream school learning support staff to support all Autistic children, ASD1 included.

4. Ensure that schools are adequately resourced with school psychologists. Ensure that support for mental health for children with autism is embedded within the school system.

5. Enable mainstream schools to easily access specialist educational occupational therapists.

6. Implement a national peer support and antibullying education campaign to make school communities a safer and more welcoming place for neuro-diverse children.

Improve access to the community for children on the Autism Spectrum Children on the spectrum struggle with community access and social inclusion. Many community organisations are not well equipped to include neuro-diverse children. This means that ASD kids are not able to participate, and are often actively turned away from these activities. Community engagement and social support is critical for families with autism. Particularly single parents. Yet there is an enormous stigma attached to parenting an Autistic child. Often parents of Autistic children are ostracised along with their children. This is incredibly damaging to both parent and child. We need to equip our communities to better include these families. Community awareness programs run in Victoria have been very successful in addressing this stigma.

Recommendations:

1. Make available free training for community activity providers (such as scouts, swimming teachers, soccer coaches) etc to give them the skills to better support children with Autism.

2. Make online resources available to promote how community organisations can actively support people with ASD.

3. Adequately fund support workers either through the NDIS or through other programs to ensure that ASD children receive the support that they need to participate in the community.

4. Run a national community Autism Acceptance campain, drawing on the success of those run in Victoria. .