1,132 Autistic people, parents, carers and professionals told us what language they actually want used to describe autism; and it isn’t what most services default to.
In this episode, David walks through the full findings of NeuroHub’s Autistic Language Preference Survey 2025/26, the largest piece of community-driven research NeuroHub has run on this question to date. Fifty-six percent of respondents prefer an identity-based term such as “Autistic person”; among Autistic respondents themselves, that rises to seventy-one percent. But the real story isn’t the headline number, it’s what predicts it, and it isn’t diagnosis, age or gender. It’s whether someone is Autistic themselves, and whether they’re connected to Autistic community spaces.
The episode also covers the survey’s most uncomfortable finding: nearly forty-five percent of respondents describe Hans Asperger, the clinician whose name still labels a diagnosis and an identity for many people, in terms of Nazi collaboration, eugenics or complicity in the killing of disabled children. David explains what the data shows about who holds that understanding, and why it’s the single strongest predictor of rejecting his name.
Along the way: why a diagnosis doesn’t predict the words people keep using in later life; why professionals and Autistic people so often talk past each other on terminology; and what NeuroHub thinks services, charities and training providers should actually do differently as a result.
Content note: this episode includes factual discussion of the Aktion T4 programme and the Nazi-era killing of disabled children (around minute 32), handled briefly and without graphic detail.
The full written report, with every figure, statistical test and methodological caveat referenced in this episode, plus the anonymised dataset, will soon be available from NeuroHub Community.
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Earlier this year we ran a live course called Embracing Our Autistic Selves. It was immensely popular and ever since we've been asked when we will run it again.
We are planning to run it live again soon, but until then, we have created a 3-part pre-recorded audio version that is available to purchase on our Ko-Fi shop.
What is it?
This course is an exploration of how we understand being Autistic that contains space for contemplation and mindful exploration. It is Pay-What-You-Can Afford (minimum £10), and lasts roughly one hour split over three lessons. If this sounds like something you would like to access, you can do so at the button below.
‘A Day Dream’ by Edward Poynter [1863] || (Image Source: Wikimedia Commons).
Ever since my mother enrolled me in piano lessons as a child, I’ve always carried a deep love for the instrument. There was something magical about watching my older cousins play, attending their recitals and listening to pieces that seemed impossibly difficult to play, yet effortlessly beautiful. I dreamed of standing on a stage like that one day, performing music with the same confidence and grace. More than anything, I wanted the elegance that seemed to come with knowing how to play the piano.
But my journey with music was far from idyllic.
Unlike my sister or my older cousins, I wasn’t naturally gifted. If a piece took them a week to learn, it might take me two or three. Every performance demanded hours of repetition, experimentation and frustration. I couldn’t rely on talent alone (or my lack thereof), so I had to invent my own methods through trial and error. I learned how I learned—finding techniques that suited my hands, my memory and the way my mind processed music. Looking back, I realize I wasn’t actually less capable. I simply had to become more resourceful much earlier.
And here’s the difficult truth about the world of classical music: it rarely rewards effort as generously as it celebrates talent.
Which is why, most of my piano memories are often tangled up with comparison. I was constantly measured against my cousins, friends or anyone around my age who seemed to progress faster than I did. Before every recital, every competitions, the voices of those criticisms would begin long before I touched the first key. They would swirl around in my head until they drowned out everything else, and by the time I started playing, my whole body would tense and my hands would already be trembling.
It didn’t help that I rarely found teachers who understood me.
Many of them naturally gravitated toward the students who learned quickly, and I can’t blame them, really. Teachers often have limited time, and gifted students are easier to polish. But as a child, it felt as though I had become invisible. The slower I learned, the less attention I received, and the less attention I received, the more convinced I became that I simply wasn’t good enough.
Because of this, little by little, my love for the piano began to fade.
I did graduate eventually. Barely.
Yet I’m proud of myself that I finished it, especially considering how much of the journey I spent doubting whether I belonged there at all. I even managed to win a local piano competition as my own ‘final act’, before walking away from that chapter of my life completely.
At least, that’s what I thought I was doing.
I thought I could get over it and move on. Pursue something that’s worth pursuing. Something of my own, my real talent. But throughout my university days, I still couldn’t stop thinking about piano.
It felt like I had only skimmed the surface of what music could become.
While many of my friends happily closed the lid on the piano after finishing their graduating exams, I found myself being pulled back to it over and over again.
Me, at 15 years old, during one of my last piano competitions. Sadly, I didn’t win, but I definitely had fun. It was exhilarating.
Whenever I had the chance, I’d wanter into the arts building on my campus, quietly slipping into an empty practice room whenever I could. I’d head into the classroom with the Steinway (thanks to my best friend who had classes there). I’d sit there for as long as I was permitted, playing whatever came to mind until the security guard eventually asked me to leave. Sometimes, perhaps sensing how much those moments meant to me, he’d smile and let me stay until the building closed.
Looking back, I don’t think I could ever truly quit piano.
I simply walked away after I graduated, from the version of piano that had taught me to associate music with fear.
Now, years later, after enough healing to quiet those old voices, I’ve decided to return by pursuing a Diploma degree. Not because I have something to prove, but because somewhere beneath all that anxiety, there was still this little girl who fell in love with the piano before anyone convinced her she wasn’t good enough.
And I believe she deserves another chance.
This taught me an important life lesson.
There are dreams we abandon not because we stop loving them, but because someone, somewhere along the way, convinced us that we weren’t talented enough, smart enough or worthy enough to keep going. Sometimes we don’t give up on the dream, we simply give up on the version of ourselves that believed we could achieve it.
So if there’s something you’ve been avoiding because it reminds you of failure, comparison or heartbreak, maybe it’s worth returning to.
Not immediately. Not without first giving yourself the time to heal.
But when you’re ready, try again.
Because sometimes the very thing you’ve been running from isn’t what hurt you in the first place. It’s the shame attached to it. And once you’ve untangled the two, you may discover that the thing you loved all along was never your enemy.
It might even become the thing that helps you heal your inner child.
Sincerely,
Cherie.
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