NDIA Accountability Project

Response to the draft National Autism Strategy

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Response to the draft National Autism Strategy

May 2024

Kiind | operated by Parents of Children with Special Needs Inc
Ground Floor, Family Resource Centre
Perth Children’s Hospital
15 Hospital Ave, Nedlands WA 6009
C/- Child and Adolescent Health Service, Locked Bag 2010, Nedlands WA 6909
Phone (08) 6164 9806 Email hello@kiind.com.au Web Kiind.com.au

Kiind is endorsed as a deductible gift recipient (DGR) under item 1 of the Income Tax Assessment Act 1997

Contents

kiind.com.au Page 2 | 8

We are Kiind.

Kiind is a family-led, independent peer support organisation with 36 years of operation. We are Western Australia’s largest not-for-profit member organisation providing free support for families raising children living with a disability, developmental delay, autism, genetic, rare, undiagnosed and/or chronic condition, from birth to age 25.

Kiind members are connected to the support they need through a variety of Kiind programs and services. We provide practical assistance, emotional support, connection to other families and help top plan services and supports for children to live their best lives. Around half of our 6,500 member families identify as having a child with autism.

Below we provide commentary on what we have heard from families on their priorities for what needs to change to support the autism community, what we think is missing in the draft National Autism Strategy, and our recommendations for improving the Strategy’s response to the needs of Autistic children and young people, and their families.

Comments on the draft National Autism Strategy

What we heard

Kiind engaged with our membership during the National Autism Strategy consultations between September and November 2023.

We asked families raising children and young people with autism what needs to improve.

Here are the key themes from families:

  • Coordinated supports between systems (particularly health, NDIS and education) with consistency across different states and regions.

    “An autism-centred entity that supports autistic individuals and their families - a safe place to get information as well as share our concerns and complaints.”

  • Universal access (financial, social, physical, information and sensory) in all systems.

    “Education, Health systems, community shouldn’t be adding in the adaptions as they encounter neurodivergent people. There should be the assumption that we are in the community and the adaptions should be built in. Universal design.”

  • Simplified and universalised, affordable and rapid diagnostic pathways.

    “Earlier support = better outcomes for child = happier life for child and family”

    “One system that covers diagnosis rather than navigating/google search lots of providers. Like a one-stop shop”

  • Flexible and inclusive education and early learning, e.g. playgroups, schools

    “Education system overhaul to Neurodiversity-affirming practices across schools”

  • Family-centred supports

    “See the family as a whole - parents are autistic too”

  • Financial support for families and carers

    “Give carers/parents financial help. We cannot work as much as people with neurotypical children who can be independent in life.”

  • Community inclusion and awareness — e.g. media campaigns, Autistic visibility.

    “You don’t know/understand what you don’t see”

    “That feeling of not fitting in or being alone is repeated in almost every autistic person’s story.”

  • Supports for young people with autism - delay transition to adult systems

    Many families highlight the need for additional supports for Autistic young people as they reach adulthood. Services are either child-centric, or focused on adult supports. We want to see a system of supports built around the needs of Autistic young people aged 16-25, e.g. accessible, age-appropriate youth and transition services.

    “16-25 years old support systems”

    “Age split at 16-18 for mental health issues.”

  • Normalisation of neurodiversity — broadening community awareness that difference does not equal disability.

    “As a parent of a child with autism, | was first exposed to the word ‘autism’ when he was diagnosed. It would have been helpful if | was exposed to autism in normal day to day settings prior to this.”

    “Move away from a medical pathologized understanding to a neurodiversity-affirming understanding.”

We also asked families what needs to improve in community attitudes to autism, and what they think are the solutions. Here are the key themes that emerged from conversations:

  • Community participation in mainstream settings — e.g. sporting groups, local clubs.

    “Expand ‘sunflower’ lanyard program - awareness everywhere of what it means”

    “Looking forward, if ASD kids are in mainstream settings together with neurotypicals, it would help ‘neurotypicals’ deal with neurodiversity in future”

  • Neurodiversity awareness training in general community and mainstream settings, led by neurodivergent people.

“My son was asked last year to be part of a group speaking to small groups about the way anyone who is different is treated at primary school. Would like that to be a regular thing, that kids themselves get to tell their stories and make suggestions.”

“Encouragement for general public to do online training”

  • Positive autistic role models in public positions, sports, schools, arts, and business

    “More literature in schools to explain and showcase successful autistic people”

  • Media presence and public awareness campaign (see this example from Canadian Down Syndrome that went viral in 2024).

    “Better education of the general public through social/media campaign about compassion and understanding and acceptance of autistic individuals”

    “Challenge conceptions of what autism is”

    “More awareness of the different forms and presentations of autistic people”

What are the gaps in the draft Strategy?

We are pleased to confirm the draft National Autism Strategy aligns with many of the priorities identified by our member families. Our consultations uncovered the additional themes of:

  • The ‘missing middle’ of the service landscape in the years between childhood and adulthood - support for Autistic young people aged 16-25; and
  • Strong desire for a media campaign to improve public awareness of neurodiversity.

Kiind’s review of the draft National Autism also identified the following:

It is unintentionally adult-centric

When you picture a ‘person’, what type of person do you see? The draft National Autism Strategy mentions ‘Autistic people’ 167 times but mentions ‘children’ only 12 times.

While the National Autism Strategy is intended to consider autism across the lifespan, and ‘people’ is meant to be inclusive, the truth is that we tend to conceptualise ‘people’ as adults, which means children are unintentionally overlooked in the draft Strategy.

Autism is most prevalent in children and young people, in fact 83% of people with autism in Australia are aged under 25!i

Autistic children need to be named in the National Autism Strategy as key members of the Autistic community in Australia.

Education is more than a pathway to employment

While we acknowledge the importance of supporting autism through the lifespan, we do not think education is given the weight it deserves in the draft Strategy.

Autism is most prevalent among school age children, and we know from the lived experience of families that education is a major system of strain and exclusion for many Autistic children and young people.

Educational inclusion promotes children’s skills and wellbeing across all developmental domains including social, emotional, physical, cognitive and language development.

Education is the number one factor influencing children’s social inclusion and has significant consequences for their lifespan development, and therefore should be included in the National Autism Strategy as a core Outcome Area with corresponding commitments.ii

Neurodivergent families need extra recognition and support

When one family member receives an autism diagnosis, this can bring a possibility of autism among other family members. Often, parents seek diagnostic assessment for themselves or a sibling after a child’s diagnosis. Others may delay or forgo a diagnosis due to waitlists and cost barriers.

Recognition and support for Neurodivergent families requires an understanding of how the whole family system interacts.

Neurodivergent parents provide compassionate, safe and supportive parenting, but they can also be prone to stress and burnout.iii

Family-centred support means recognising the strengths and needs of all family members. For example, one parent who describes themselves as ‘Neurospicy’ told us:

“If | can’t co-regulate myself, how can | co-regulate my children?”

Additional supports and capacity-building to help families manage daily life can enhance the wellbeing of parents and children, improving relationships and core skills, and reducing stress.iv

Autistic parents may benefit from additional respite or in-home support to meet their own needs for regulation. For example:

As an autistic single parent of a neurotypical child, | need more support! | need breaks from parenting, so | can work but also so | can have time to decompress and recover from overstimulation.

Providing strengths-based models of parenting and family centre care tailored to family circumstances can improve outcomes for parent and child.v But these approaches must be operationalised in existing services, with accountability for demonstrating outcomes.

Our recommendations for improving the draft Strategy:

1. Address the intersectionality of childhood and youth with autism

  • The experience of autism in childhood, adolescence and young adulthood needs to be better understood and supported in the National Autism Strategy, with further consultations with children and young people so they can have a direct voice in the Strategy.

  • As children and young people are the largest cohort of Autistic people in Australia, the Strategy should highlight the distinct needs of this cohort, and examine how their needs differ from the adult Autistic population.

  • Mention Autistic children more: consider replacing the term ‘Autistic people’ with ‘Autistic children, young people, and adults’ or similar.

  • Build a system of supports for the missing middle — young people age 16-25

  • Delay transition to adult systems for young people with autism

    “16 years is too young for autistic kids to be in the adult system. Centrelink, hospital, mental health. Not safe to be self-reliant without carer/parent help.”

2. Make Educational Inclusion an Outcome Area with its own commitments.

  • Education should be a standalone Outcome Area in the National Autism Strategy.
  • There are very few families we speak to who have not struggled to have their children’s needs met in education. For this reason, we recommend that Education be considered separately from Economic Inclusion in the National Autism Strategy.
  • The Education discussion on page 13 under the section ‘About Autism’ needs to be expanded. See below for a discussion of education issues for consideration:

There is an urgent need to address inequalities that disproportionately affect autistic people, many of which begin in childhood, in education settings.

School is an important social environment where children learn to interact with their peers, a task people with autism may find difficult. An appropriate school environment can provide opportunities to develop important social and life skills. Many children on the autism spectrum struggle socially, needing additional support throughout their education.

In 2018, 92.3% of young people (101,900) aged 5 to 20 years on the autism spectrum attending school had some form of educational restriction (92.5%), including a small number who were unable to attend school because of their disability. Two in five (40.8%) of the children attended a special class in a mainstream school or a special school.