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A little while ago someone asked me "what is it autistic people really want?" and my answer was "ask them, and then you will find out." Over the years I have come to realise how much we over complicate things when good quality support is simply about listening and through this seeing people empowered to build and grow their lives. It is my view that professional assumption is the direct enemy of person-centred support. We still "place people in services" as opposed to supporting people to truly live their best lives in ways that make sense to them and which support their own value set.
The figures are depressing, but according to the National Autistic Society (NAS), as of December 2024, there were 2,050 individuals with autism or learning disabilities in inpatient mental health hospitals in England. Of these, 1,430 (70%) were autistic. The NAS also report that whilst the NHS Long Term Plan, published in 2019, aimed to reduce the number of autistic individuals and those with learning disabilities detained in mental health hospitals to less than half of 2015 levels by March 2024, as of April 2024, this target was not met, with only a 30% reduction achieved. Notably, while there has been some progress in reducing detentions of individuals with learning disabilities, the number of autistic individuals detained has more than doubled since March 2015.
There are some strong advocates out there addressing these depressing statistics and speaking very clearly, based on direct consultation and engagement with autistic people, for a radical change in how support is delivered.
Dr Simon Duffy , Director of Citizen Network, has emphasised the importance of self-directed support and community-based solutions in transforming care for autistic individuals. He advocates for empowering individuals to have control over their own support systems, thereby reducing reliance on institutional settings. In his work, Dr. Duffy highlights the need for innovative approaches that promote citizenship and inclusion.
Think Local Act Personal (TLAP) underscores the significance of personalisation and community involvement in social care. They argue that services should be tailored to individual needs and preferences, enabling people to live fulfilling lives within their communities. TLAP's frameworks and guidelines stress the importance of co-production, where individuals are active partners in designing and delivering their support.
Social Care Future envisions a system where people "live in the place we call home with the people and things that we love, in communities where we look out for one another, doing the things that matter to us." They advocate for a shift from traditional care models to community-based supports that foster autonomy and social connections. This approach aims to move away from institutionalisation towards inclusive community living.
Collectively, these perspectives highlight a transformative shift towards personalised, community-centred support systems that respect the autonomy and preferences of autistic individuals.
A 2024 Scottish study engaged 225 autistic adults to identify their research priorities. The top concerns included mental health and well-being, enhancing diagnostic processes, developing person-centred support, addressing stigma, improving employment opportunities, understanding experiences of violence and trauma, advancing education, and fostering life skills.
It is clear that in answering the question "what do autistic people want?" that the answer lies in a direct shift of power away from professional assumption and toward genuine self-directed support, recognising the validity of the lived experience and trusting people, and those closest to them, to map out the future they see for themselves. People are seeking support, but they want support where they are in control, at the absolute centre, and that their voice is heard above all others.
I remember being on-call one evening and I received a call from a very distressed Support Worker. She was supporting M, an autistic individual who lived as a tenant in her own home, in the community. She had 24-hour support to make this possible. M had just moved into her new home from a residential setting that had failed her and the Support Worker, her voice full of frustration, was describing a picture of M emptying the contents of her fridge all over the floor, including milk, eggs, and so on. The Support Worker described how all her interventions to stop M doing this had failed, even resulting in her being scratched. My advice didn't go down well! I said "stop intervening, get yourself out of the way, just step back, observe, and record what you see. Pay attention, but at a distance. M is clearly communicating something very powerful, and we need to hear her." I added "we can tidy up later, now it's about us listening to M and learning what she wants us to know."
The entire team, family, professionals all came together around this, with M at the centre. We saw that the kitchen was a huge trigger for her, most particularly the fridge and the sensory stimulation that emanated from the kitchen. Working hand in glove with M, we supported her to purchase a fridge/freezer that could happily and safely live in the garage, and we installed a much smaller fridge in the kitchen. Through direct observation and using scripting and intensive interaction, we trialled a stable door between the kitchen and lounge, a door that was under M's direct control. These two simple adaptations, based on genuine observation of M and her sensory environment, removed the overwhelm the kitchen was triggering for her. M chose herself whether the door was fully open, partially open, or closed. It gave her choice and control over her own living environment. I remember smiling broadly one afternoon as I observed M close the stable door with absolute certainty. She slammed it shut and looked at me and grinned! My smile was broad because I could see that M was in charge of her own life.
M wasn't able to advocate for herself in a traditional way. We couldn't sit and have a conventional conversation with her, but we could learn to observe, be with, practice empathy, employ intensive interaction, and listen to how she was making her own feelings known, not through our interpretation of her behaviour as such, but from simply observing patterns and themes and coming together in genuine co-production, to explore options and possibilities with her. This gave M personal control and empowerment, and she recognised and valued this.
We are all frustrated with the system, we know it's broken, we know it doesn't work and that it needs to change, and the slow, even non-existent pace of change distresses people supported and those who advocate for new ways. But we can work with people on a local level and support people to make these individual changes that enable people to practice autonomy over their lives. In the grand scheme of things, it may seem very small, but for M, this was huge as it supported her to move out of institutional care, avoid admission to a secure unit as was being advocated by some, and genuinely live in her chosen community and be an active part of it.
Internationally autistic people are speaking with one voice. Autistic people are saying very clearly that they don't want to just be consulted but are wanting to be actively involved in designing, delivering, and evaluating services, policies, and research that affect their lives. Co-production enables this through a collaborative approach where autistic individuals, their families, and professionals work together as equal partners in designing, delivering, and evaluating support. This process values the lived experience of autistic people, ensuring their needs, preferences, and voices directly inform decisions, leading to more personalised and effective support that promotes autonomy, inclusion, and empowerment.
Key to this is a move from provider competition to collaboration, truly working together, not to maximise profit, but to maximise positive outcomes for autistic people. We can do this in some very simple ways:
We can all do this, placing the autistic person at the very centre and working together to effect change. At Insight2Excellence, we believe in facilitating these transformative approaches, supporting organisations to develop authentic co-production methods that truly honour the voices and autonomy of autistic individuals.
#coproduction #autism #socialcare #livesnotservices
