Select Committee on Autism
Department of the Senate
PO Box 6100
Parliament House
Canberra ACT 2600
12 July 2020
Re: Select Committee on Autism
Dear Senator Hollie Hughes and committee members,
Thank you for considering my submission to the Select Committee on Autism. My submission will mostly pertain to the terms of reference related to human rights under the United Nations and within Australian law and Item K of the Terms of Reference, “social inclusion and participation of autistic people within the economy and community.”
My professional experiences
I am writing to you as someone who has worked in the autism field for 18 years in 5 different countries. I have been privileged to work closely with families in a clinical capacity within early intervention in Canada, Bermuda, Bahrain and in Thailand between 2002-2010.
Since moving to Melbourne in 2010 I have worked in not for profit (Amaze/Autism Victoria), in research and academia (The University of Melbourne/The Royal Children’s Hospital) and for the past two years I have worked for the State Government of Victoria (Sport and Recreation Victoria (SRV)). Much of my role in SRV has been in designing and overseeing SRV’s response to the Victorian Parliamentary Inquiry into the Provision of Services for People with Autism (2016).
My formal education includes an undergraduate degree in Psychology and a Master of Science completed at Deakin University with The Australian Football League focused on building an understanding of the benefits, barriers and facilitators of participation in sport.
The most important part of my education has come from working directly with the autistic community, their families and a wide range of professionals and volunteers. Overtime, I have seen how all the hard work invested in early intervention can come out loud during a push on the swing. I have seen the terror and fear in the eyes of parents who have had children wander away from their home even though they had multiple locks on their door. I have seen the sense of pride coming from autistic people gaining meaningful employment within the sport and recreation sector. Recently I saw the tears of joy as parents sat watching a Melbourne Vixens game from the sensory/chill room at Melbourne Arena. The sensory room meant they had option for a quite space or to be right in with the crowd like everyone else. For over a decade they hadn’t been to a game, something they did when they dated. The parents sat, tears in their eyes, arms around one another while their children both watched the game. An image I had seen just a few weeks before at the chill/sensory room run by the St. Kilda Saints at Marvel Stadium.
In a country like Australia whose culture revolves around sport, what better place to use physical activity, sport and recreation as a vehicle to create social capital and great change through inclusion.
The recommendations that follow reflect my 18 years of experience and should not be construed as my recommendations or suggestions as an impartial public servant/employee of the Victorian Public Service. The views that follow are mine, and mine only.
Physical activity, sport and recreation as a human right and a vehicle of community and economic inclusion
Is access to sport a human right? Yes, it most certainly is. Access to sport and participation in culturally relevant activities is protected internationally as a human right by the United Nations (The United Nations, 1948). The Universal Declaration of Human Rights Article 22 states that everyone is entitled to participate in the economic, social and cultural activities within society. Furthermore, in 1978 the United Nations Educational, Scientific, and Cultural Organization (UNESCO) reaffirmed access to participate in sport and physical activity as a fundamental right for everyone (UNESCO, 1978). Indeed, sport is a significant part of culture, as is belonging to a community-based sport club (Eime, Payne, & Harvey, 2009; Priest, Armstrong, Doyle, & Waters, 2008). Participation in sport for children has been advocated for as a support for children’s psychological health and social connections in the community (Eime, Young, Harvey, Charity, & Payne, 2013).
Australia’s ratification in 2008 to the Convention on the Rights of Persons with Disabilities recognises that people with disability have the right to freedom, respect, equality and dignity (The United Nations, 2018). Please consider freedom, respect, equality and dignity in the following.
Types of participation
Athletic participation can support social inclusion using sport and recreation from autism only groups through to mainstream competitions and can include grassroots come and try days through to international competitions.
Spectator participation is supported when the design of the built environment and training and support of staff ensure access and inclusion. A few decades ago, and indeed today on many trams people still fight for basic access issues. What are the access issues people with autism need? What role will sensory, quiet, and chill spaces play in the future at museums, musicals and at sporting events?
Economic participation can be supported by the sport and recreation sector through it’s diverse range of career pathways. Of course, this isn’t about the sport sector doing a favour or acting charitable through employment. This is about seeing the autistic business advantage that diverse employment, skills and insights brings.
Recommendations
- Engage with autistic people, families, carers and the professionals who support them as you determine and implement recommendations
- Create a system for true co-design and autistic led initiatives
- Co-design happens when you are thinking about what to fund, and how to fund it. It doesn’t just happen after the funding is provided.
- Ensure a system for continual consultation with the community
- Ensure people with autism and their families who are engaged with are paid for their time. This is easy to do. Take the average hourly rate of government staff involved in designing steering committees and pay that to those whom you engage to help the steering committee. It is not ok to have steering committee members unpaid while others are there in a paid capacity and wouldn’t be there otherwise.
Workforce planning
- Graduate more professionals to work with people with autism.
- A multi-disciplinary team is widely regarded as the best approach to supporting people with autism.
- Occupational Therapists are worth their weight in gold!
- You can never have too many Speech Therapists!
- Establish more programs that graduate Board Certified Behaviour Analysts (BCBAs).
- Encourage health professionals to live in regional and rural locations through tax incentives.
- Allied Health professionals are an excellent investment in the economy and pay a substantial amount of tax over their lifetime.
- Create early intervention centres in regional hubs.
Early Intervention and education
- Fully invest in early intervention using a multi-disciplinary team. Yes, this investment will be substantial, and yes, the outcomes will be worth it.
- Investing in early intervention increases the number of people with autism who secure long-term employment (i.e. pay tax). For others who may not secure employment additional levels of independence mean less care needed long term reducing lifetime costs on health system.
- Of course, providing the best care and best intervention is the right thing to do both morally as well as economically.
The Education System
- Ensure all teachers graduate with the skills needed to teach a diverse group of children, including children with autism, and children with autism and co-existing conditions such as intellectual disability, cerebral palsy, ADHD, anxiety disorder and sensory dysfunction.
- Professional development will always be needed, develop agile and responsive systems that identify opportunities for improvement.
- Never underestimate the power of lived experience in professional development.
- Ensure all physical education teachers have the resources they need to support a diverse group of students.
- Everyone, including people with autism and disability benefit from higher levels of physical literacy.
- Hire more teacher assistants.
- Regardless of all of the superpowers teachers have, no one can manage classroom student to teacher ratios as large as they currently are.
The Sport and Recreation Industry
- Consider what is working in the sport and recreation sector.
- Perhaps voucher systems in some states or investment in learning modules for coaches in others. Australia has plenty of great initiatives, find them and put wind in their sails.
- Consider the role of Sport Aus and the Sporting Schools program to support greater levels of inclusion.
- Yes, the program says it is inclusive but what active steps are taken to ensure inclusion happens? What training is offered to the incredible coaches?
- Evaluate current initiatives designed to support social inclusion through physical activity, sport and recreation.
- Consider activity-based socialisation as a way to generalise skills learned in early intervention. For example, in an autism swim class perhaps this is a good time to practice intonation and prosody that has been worked on with a speech therapist.
- Consider a range of activities that go from basic physical literacy and increase in complexity that require greater levels of game sense (i.e. theory of mind, the ability to predict thoughts/movements).
- Ensure that autism and disability inclusion is embedded in mainstream physical activity strategies and that these initiatives are properly funded.
- Design and delivery a national strategy that includes sensory/chill spaces at major stadiums, arenas, museums, airports and theatres.
- Consider how diverse the sport and recreation sector is for student internships, volunteering to gain experience and paid employment.
- National Disability Insurance Scheme: establish a library of judgements and decisions that inform what has been decided as ‘reasonable and necessary’ as it pertains to the human rights of inclusion and access to physical activity, sport and recreation.
- Many people are benefitting from increases social inclusion using sport to reach some of their NDIS goals.
- A reasonable system that aims to empower people would share judgements and precedents publicly. This would result in a system of empowerment instead of one that requires significant levels of advocacy.
Evaluation and policy implementation
- Australia, (especially Victoria 😊) is home to world leading researchers focused on inclusion of people with autism and disability.
- Australia is also home to some of the most passionate autistic people, families, volunteers and professionals.
- Decision makers who inform policy would benefit from greater levels of connection to the excellent research happening and will especially benefit from having more autistic advisors around them.
Thank-you
If you are still reading this I want to say an especial thank you to autistic people and their families. As we look back over history it is the self-advocacy that has made some of the biggest differences.
We as professionals are privileged to build our careers working with some of the best people around and to not only grow as professionals but to grow as people. It is important that as professionals we say thank-you to the families who open their doors, who grant us trust and to the autistic people who teach us so much. Thank you for everything you do, and continue to do, we are all better for it.
Thank you for your careful consideration.
Sincerely,
Shawn Stevenson
Adv BA Psychology, Master of Applied Science