For generations, autism therapies and interventions have been designed and prescribed largely by non-autistic professionals and researchers. But in recent years, the growing neurodiversity movement has demanded a shift – arguing that autistic people themselves should have a central voice in shaping therapy goals and methods.
So are we really listening to autistic voices when it comes to autism therapies and treatments? In this post, I’ll explore how well the priorities and insights of autistic people are being heard, and why greater participation is urgently needed.
The Rise of Neurodiversity
The neurodiversity paradigm views autism as a natural variation in human neurological wiring, not a ‘disorder’ to be cured or eliminated. It calls for therapies and supports that help autistic individuals adapt and thrive as their true selves – without trying to ‘normalise’ them or suppress their innate differences.
For neurodiversity advocates, one crucial implication is that autistic people themselves must help shape autism therapies based on their lived experiences and insights. As autism researcher Dr. Steven Kapp argues, participatory research approaches are vital to develop therapies that genuinely meet community needs and priorities.
Do Autism Therapies Reflect Autistic Insights?
However, an honest examination reveals a continued lack of integration of autistic voices in designing and evaluating autism therapies.
Take applied behaviour analysis (ABA), the most widely-used autism therapy for children. Multiple studies show many autistic adults view ABA as traumatising and even liken it to ‘dog training’. Yet their concerns about ABA’s highly rigid and compliance-focused methods have resulted in little change.
Similarly, autistic self-advocates have long called for alternative therapies fostering self-esteem, self-regulation and acceptance of differences. But medical guidelines remain firmly focused on changing behaviours to fit narrow definitions of ‘normal’.
Why Listening Matters
Continuing to overlook autistic insights in therapy design has major costs. It means…
Therapies are misaligned with real community needs and priorities. They try to ‘fix’ things autistic people don’t view as broken.
Therapies often inadvertently cause trauma and anxiety by forcing compliance and suppression of natural behaviours.
Therapies reinforce the harmful narrative that autistic people must be ‘normalised’ at all costs to have a good life.
As autistic advocate, Yerker Andersson summarises: “We need to develop a clear understanding of how autistic people want to be helped and supported. Our insights are key to finding therapies that work.”
Rethinking Autism Therapy Evidence
To better integrate autistic experiences, the evidence used to develop therapy guidelines must evolve.
Autism therapy research remains dominated by third-person perspectives and ‘expert’ priorities. There is a minimal assessment of therapy impacts on self-identity, self-esteem or quality of life from the autistic person’s viewpoint.
As the research team of Dr. Steven Kapp argues, autism therapy studies should emphasise “first-person accounts of [therapy] goals, experiences and outcomes”. This will provide essential evidence on if therapies actually help autistic people live happier, more authentic and self-determined lives.
Next Steps for Participatory Autism Therapy
How can we better centre autistic voices in designing and assessing therapies? Some key steps include:
- Actively partnering with autistic-led organisations to shape therapy research and practice.
- Ensuring autistic people give informed consent for any therapy and can cease at any time.
- Carefully evaluating therapies based on the first-person quality of life impacts, not just third-party metrics.
- Training therapists to recognise and nurture autistic identity, not just change behaviours.
As Dr. Damian Milton summarises, participatory approaches must recognise autistic people as “equal partners in the research process, not just subjects”.
From Listening to Action
Truly integrating autistic experiences and insights in therapy design will require openness, humility and willingness to change from researchers and clinicians alike.
But it holds the key to developing therapies that empower autistic people to live as their best selves, not shadows trying to pass as ‘normal’. And it will build vital trust between autism communities and the medical establishment.
Our chief duty should be to listen to autistic voices, and then take action. Only then will autism therapies help autistic people build the lives they want – not the lives others think they should have.
