Autism Breakthroughs

"While research is focused on identifying specific mechanisms underlying autism, families are searching for an understanding of the disorder that will enable them to manage their child and to develop a strategy to optimize their child’s potential"
~ Dr Stephen W. Porges

This journal examines breakthroughs in autism therapy.


NDS Victoria State Conference | Transcript

Holly was invited to address the session entitled "Contribution, relationships and working together – rethinking community participation" at the March, 2017 NDS State Conference in Victoria.

Her perspectives and experiences on co-design to build community participation were the focus.


The Community Inclusion Project, funded by the NDS, was a two year project with 11 organisations around Australia working together to study co-design and how to develop positive, sustainable work practice in community inclusion. These are some of the findings from my work on the project through the Autism Association of Western Australia.

Contribution, relationships and working together – rethinking community participation

In WA we have always and only had individual based services, so in some respects we had less to learn about community participation than other organisations, however what I found from the year long project was just how complicated it can be to fully embrace and deliver the ideal service.

The ideal service allows people to flourish and to explore what they can be, who they can be. And all disability services I have worked with, work very hard to embrace this. The smaller the organisation the easier it is to stay very connected to the families and individuals; the larger the organisation, the greater pool of staff, staff training and professional input. Each have their unique ability to offer individual services. However, the particular ingredient that needs to be present in the background and foreground of each and every service is co-design. Co-design allows for a new dimension to individual services.

What stood out to me on this community inclusion project was this: the exploration of co-design and the ability to translate it into a work environment was easier said than done, even within the WA framework. There are a number of reasons for this:

  • Everybody is very busy
  • Often massive case loads for coordinators and LAC’s (this is only getting worse)
  • There are limited resources, financial constraints.
  • People have grown up with the disability model of deficit and unconsciously (or consciously) come from this position with their clients.
  • Culture and Education system have trained us towards outcomes, performance and quick solutions.
  • Different cognitive styles of staff prohibit or allow the use of co-design. - not everybody gets it.

We are unused to working with co-design, yet it is the very thing we need to move forward into a new space where families and individuals learn they can have a more interesting life. And this is true for all service providers, not just the states who are developing individual practices. A lot of our notions of disability are deeply embedded. A lot of our ideas of productivity and work ethic are deeply embedded (and flawed) and families and individuals are also often as affected by these outdates mindsets as the staff themselves.

I wrote this piece whilst on the project and it describes co-design nicely but sadly is antithetical to how most people go about their day:

“The thing about co-design is that it is subtle and when you think you have a handle on it, you don’t. The point of co-design is that it is not something you master; it is something that you learn to play with. You learn to unlearn all that you think you know about how things should be and how they should go. You learn to sit back, to listen, to elicit, to be second even when the person with you cannot speak or be directive. You learn to look for new things, new ideas, tiny new green shoots, you learn to ask questions and more questions and not needing a concrete answer. The answer is the awakening space, not in the result. You learn to create room for new vision and opportunity for families, clients, carers, the community; even when they do not believe anything new is possible and you learn that even the tiniest glimmer of hope can bring about the greatest change, as long as you don’t jump on it but let it grow and blossom at its own pace”.

I am quite fond of chaos theory and I am happy not to know where I am going. Some people on the project relished this too, others found themselves uncomfortable swimming in deep water. People like to know where they are going and to have definition. The problem with co-design is, for a time, you have to be open to not knowing where you are going. That is the only way you get to go somewhere new:

  • Collaboration – It’s not about gluing together existing egos. It’s about the ideas that never existed until after everyone entered the room.”
    • Organisational training (as a whole, so ethics of co-design becomes implicit in the culture).
    • Professional staff and coordinator training (in co-design, they don’t necc know how).
    • Support staff training (most important).
    • Properly train and then trust your support staff.
    • Teach the staff on the ground.
    • They have the most time to spend with the clients, they have the closest relationships with them. The coordinators are too busy to be able to give that level of support. Get them to learn how to open up conversation, get them to learn how to record their clients’ wishes and needs. Give them a model to work from. Teach them to challenge their preconceptions and expand what is possible.
    • Make sure there is excellent communication between staff, coordinators and the wider organisation. Have regular staff meetings. Share what works. Share stories. Stay connected. Make them feel included.
    • And it is this, we are creating something new, we don’t know what it is going to look like, we shouldn’t know what it is going to look like. We are making a space available for people who have never been given this kind of opportunity or voice – just to listen to themselves, listen to their dreams and to expand what is possible.

    In WA we do this a lot. We do individual plans for people, we listen to their wishes and needs and create a year plan that best fits the person and their situation and then we take people out to golf, to men in shed workshops, swimming, abseiling, Japanese classes, the gym, art classes or anything else that they wish to do.

    And we try very hard to accommodate the needs and wishes of the individual and the needs of the family. But we could do it better. There are always ways to improve and as the whole of Australia, let alone the world are just starting to awaken to the possibility of people with disability – and we need to find new ways to appreciate this.

    I used this model to help glean more information from my three participants over the year. I kept coming back to it, to see if we were on track, to see if there was more, if we had missed something, if something new had developed. We made an open map, a fluid map. Something to help us think and envision further and further, because no-one knows exactly where their life is going. We learnt to explore. The more I included the support staff and helped them widen their perceptions and put my trust in them , the better it went. The more we thought outside the box, the better it went. And it took time. Time, patience and space for something new.

    But how do you achieve this with all of the constraints we are under? How do we manage to provide the ideal service? Especially with those embarking on a transition to individual services?

    Practically, my advice is this:

    In WA we are very spread out and often staff are alone with clients a lot of the week. They do catch up in groups, which is useful (but can also lead to less than innovative days for the clients! My big bugbear is the staff saying ‘but they like doing the same thing in the same way!’ as a reason for the same swimming group or golf group two or three years later. People with disability (autism in particular) do like safety and this may translate to a need for repetitious activity; but very often you can open experiences by teaching people how to feel safe in NEW experiences. We can teach people it is safe to change. (this goes for staff and families too!)

    So, keep the staff connected, keep them feeling a part of the organisation, vary their workload just enough so that the really good staff are not always rostered on with the difficult situations to make sure they do not get burnout.

    One really good way of doing this is to facilitate staff doing staff training. Always make sure that there are ‘buddy’ days where new staff get to learn from the original (or most knowledgeable staff). This means there are people to take over when ‘good’ staff relocate, when things go pear-shaped and most importantly it allows the client to feel connected and safe with more than just one or two people.

    This all takes time, but I think it is the cheapest and best way to promote intimacy, positive, gentle growth and well-being for all.

    Thank you.

For more details on the community inclusion program, please see this video.