I’ve been processing Uta Frith’s recent commentary over the last few days, and I’ve finally felt ready to write about it here. It’s been a lot to take in, and I’ll be expanding on this on my website soon too.
Personally, I’m one of the late-diagnosed women she talks about. Professionally, I work with children and adults, some of whom would fit into the neat little boxes she seems to want us to fit into. Boxes that, frankly, make life easier for clinicians but don’t reflect the reality of autistic lives. 🤔
I completely understand the need for active debate about these things. I welcome these discussions. But I also feel that, as someone who sits in both the therapy and psychology camps, with training in both, alongside lived experience advocating for loved ones within the mental health and education systems. I perhaps have a unique perspective. And I know I’m not alone. There are many others in psychology and psychiatry whose views are shaped not just by their training but by their lived experiences and the experiences of their clients.
My Brother’s Story: A Painful Example of Systemic Failure
My brother’s story is a painful example of how the medicalised system fails so many of us. He now lives in supported accommodation 24/7 because his needs were misunderstood for years. His struggles were dismissed, and his capacity was overestimated because he’s highly intelligent, verbal, and outwardly “capable.”
But the reality? He’s in a state of permanent burnout because the environments around him, the expectations placed on him, and the lack of support failed him.
And let me be clear: his needs, my needs, your needs, they’re no less valid because of our differences. He’s not taking support away from anyone else either. Autistic people need support. Some need more than others, and sadly, so many of us, whatever our level of need, don’t get the support we deserve.
We Need to Change the System
We all need the systems to change. And we are so much stronger together than divided. It breaks my heart to see the infighting, the lashing out at other vulnerable groups, when we should be standing together. It genuinely makes me despair.
It feels like we’re in a time where we’re arguing over money and resources, trying to narrow things down to fit the needs into government systems that are already straining and unfit for purpose. It’s as if the solution is to change the criteria so we don’t have to support “those people over there.” 😢
The Problem with Labels
The friction between the medical model of autism and the neurodiversity movement is at the heart of this. The medical model loves its boxes, and over the years, we’ve had plenty of them:
- “profound”
- “mild”
- “high-functioning”
- “low-functioning”
- “Asperger’s”
But these labels don’t reflect the reality of autistic experiences. Worse, they create biases, both in clinicians and the general public, that minimise or distort what people are actually going through.
Someone recently mentioned “autism lite” to me, and honestly, there’s no such thing. There are autistic people with environments that support them, and there are autistic people who need more support. It’s not a competition over whose autistic life is harder or more valid. We’re not here to judge someone else’s experience of autism. People need support for their autism, and others need support for how being autistic shows up for them.
Needs Change Over Time
Needs can also change over time. My brother is proof of that. He internalised his struggles for years, and now he needs full-time care. He’s not “profound” by Uta Frith’s definition, but his needs are no less significant.
We need to stop trying to fit people into neat little medical categories and start seeing the individual in front of us. Carl Rogers, a pioneer of humanistic psychology, always emphasised the uniqueness of every person. He believed that, no matter who we are or what our cognitive ability, we all have an innate drive to be the best we can be. I believe that too. Every single person on this planet is uniquely human, valuable, and deserving of the right support to reach their potential.
Why Uta Frith’s Views Feel Outdated
And this is where Uta’s views feel so outdated. She’s still rooted in the medical model, while others are moving forward with a more social, philosophical, and mixed approach.
The world has moved on, but it seems like she hasn’t.
Research has evolved. We now know so much more about masking, about autistic girls, about non-speaking autistic people who don’t have intellectual disabilities. We know how damaging it is to dismiss lived experience as “unscientific.” Lived experience is critical to understanding autism. It’s not just anecdotal. It’s real, it’s valid, and it’s often more reflective of autistic lives than lab-based studies ever were. To dismiss it isn’t just ignorant; it’s harmful.
It perpetuates the cycle of academia working in a vacuum, clinging to medical categories without listening to the people who live this every day.
The Danger of Ignoring Internalised Distress
It’s also frustrating to see how internalised distress is still minimised. If someone’s distress isn’t disruptive to others, it’s so often ignored. But internalised distress is no less real, and it’s often more dangerous. Look at the suicide rates among autistic people. Look at the mental health crises so many of us face. My brother’s distress wasn’t loud, so it was overlooked. And now he’s paying the price for systemic failure. That’s not on him. That’s on the system that failed him when he reached out for help.
Listening to Autistic Voices
We need to raise understanding of autistic experiences, and that starts with listening to autistic people. Not just academics who haven’t kept up with the research, but the people living it every day. The autistic community has been a lifeline for so many of us. Labels like “autistic” aren’t the problem: they’re a way for people to find support, to find community, to find themselves.
The problem is the systems that keep failing us, the outdated narratives that hold us back, and the lack of critical engagement with new research and ideas.
Moving Forward Together
Dr. Naomi Fisher has been such a strong advocate for support and understanding, and I believe her involvement in initiatives like DropTheDisorder comes from a good place. But it’s hard to see her sharing Uta’s views without challenging them more. We need to have these discussions, yes, but we also need to push back when the narrative is misinformed. Because this isn’t just about semantics or academic debates. It’s about real people, real lives, and real needs.
The tension between the medical model and the neurodiversity movement is real, and it does need to be addressed. But addressing it doesn’t mean dismissing autistic experiences. It means changing the views of clinicians and working together, not against each other.
We are stronger together. We need to stop fighting amongst ourselves and start fighting for the change we all need. Because no one’s needs are less valid. No one is less deserving.
We all deserve a world that sees us, supports us, and values us for who we are.
Let’s keep pushing for that world. Together. ❤️
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