A recent media article has reignited debate about autism research. These discussions have real-world consequences, affecting access to support and shaping how autistic people understand their identities. Joanna Grace, sensory engagement specialist and author of The Scale of the Spectrum, reflects on why listening to autistic experience matters.
Listening to Autistic Voices in Research
People who do research about autistic people tend to fall into one of two camps: those who listen to and include autistic voices, and those who do not.
The first camp produce groundbreaking research that changes understanding and improves the lives of autistic people. The second camp are mostly out of date now, their research record is more confused – often they made great strides in recognising and trying to describe autistic people in the early days, but then went off on tangents driven by a commitment to pathologizing difference.
Outdated Ideas About Autistic People
Some notable (debunked) tangents include the ideas that:
- Autistic people do not have theory of mind; a position widely debunked by Damian Milton’s seminal Double Empathy work (Damian is very much a member of the first camp, as an autistic man, with an autistic son himself).
- Autistic people are not capable of empathy: an idea so dehumanising it is hard to pick yourself up off the floor to respond to it.
Imagine someone declaring that you could not feel empathy. You might point to times in your life when you have felt enormous empathy for the plight of another as evidence. But this person tells you that your empathy is not real as it is not possible for you to feel empathy. They view you as a kind of robot, your actions, your protestations, devoid of meaning. They know you best.
There is always more nuance to these things. But whilst people deserve respect for achievements they have made in life, and compassion for when they are not able to do what they once were capable of, when they publish monstrously harmful things it is important to not stand silent.
I confess my first response to being asked to write this article was to suggest someone else for the job. It is desperately sad to be confronted with people doing harm who are clearly so capable of doing better. If anyone should know the importance of reading contemporary research it should be a researcher!
One of the things this person said was that I do not exist! Neither do many of the autistic children in schools. They also let everyone know that masking doesn’t exist either. To all those parents whose children manage to hold it together to get through the school day, only to release all that tension at home… To the adults who do the same at work and then go home and behind closed doors lie in the dark capable of nothing… What a relief to know our experiences are not real!
But, as tempting as it is to parrot the nonsense and rail against it. If we draw breath, and take a step back, we can ask why? Why has this been written? Why has it been published? And then we very quickly get into murkier waters. We know the system is failing autistic children (and adults). We know this failure is costly, in all sorts of ways financial and human. And we know we do not have the money, or the knowledge, to cover the deficit.
It is broken, and we do not know how to fix it. So what can we do? If you are very afraid, if you feel very ill equipped to tackle the issue, then the safest thing for you personally to do is to deny it. Look the other way, pretend it isn’t happening. Keep yourself comfortable at the expense of others.
The other option is harder: it is to witness the suffering, acknowledge your own not knowing, recognise the imperfections all around, and to keep trying. To proceed with curiosity and compassion.
The Problem With Dividing the Spectrum
She even questioned whether the autism spectrum exists at all, a claim that runs counter to contemporary research and the lived experiences of many autistic people. A truly bizarre statement indeed.
Last week my book The Scale of the Spectrum was published. I wrote it in response to a different challenge from camp two researchers. They suggested creating a category of “Profound autism” — in their minds these people would be the ‘real’ autistics, and I would just be a lifestyle autistic. Their research would dictate outcomes for those with ‘Profound autism’, and us lifestyle autistics could just entertain each other on TikTok…
Here is what Kieran Rose, the internationally recognised Autistic Advocate, wrote by way of explanation of The Scale of the Spectrum:
Mankind has historically had a great instinct to want to organise humans into groups defined by contrasts. We are taught, early and often, to look for edges, to draw lines, to ask who is similar and who is not. Within the discourse around Autistic people, this tendency has most often taken two familiar forms:
One is separation. The impulse to arrange autistic people along a line, to place them in concrete and unchanging groups at imagined distances from one another, and to treat those distances as meaningful divisions.
The other is homogenisation. The compression and simplification of those grouped Autistic experiences into something singular, uniform, and externally and internally consistent.
Both impulses claim to help us understand, yet too often, they do the exact opposite.
Over time, the idea of the ‘Autistic Spectrum’ has not simply described difference, it has been used to organise it. In practice, this has often meant the creation of informal hierarchies, most notably through deeply problematic notions of “high” and “low” functioning, which link need, capability, and social worth. These framings do not merely misrepresent Autistic lives; they shape how people are treated, whose narratives are trusted, whose experiences are taken seriously, and define who is worthy of support, and what that support looks like.
This book does not rehearse those hierarchies, but instead, it sits quietly and firmly against those habits of thought, disrupting and disturbing them, not by disagreement, but by proximity.
In The Scale of the Spectrum, Joanna Grace does not argue that Autistic people are all the same. Nor does she suggest that our differences are trivial or cosmetic. Instead, she invites the reader to notice something more subtle and, in many ways, more radical: that experiences which appear worlds apart on the surface can be shaped by shared mechanisms beneath. That the same kinds of pressures, needs, and ways of navigating the world can be present across lives that look, from the outside, profoundly different.
With research being produced on both sides, we end up in a situation where we have to begin from a position of faith. Here is the question:
- Do you believe difference is inherently bad, that deviance from a norm signals a problem?
- Do you believe that within humanity, in spite of our differences, we are more alike than we are different?
I believe in the unity of the autistic spectrum. I have had a long career working with people who would be described by the ‘profound autism’ moniker, and I have always found my best way to understand them to be through my own autistic difference. Yes we are very different, but we are also surprisingly similar. In The Scale of the Spectrum, pairs of stories create spaces of betweenness in which shared understanding across the spectrum runs both ways.
I have known people who would be captured by the ‘profound autism’ moniker be denied pain medication because their actions were understood to be ‘autism’. To have had dental problems overlooked because it was ‘autism’. To have had their stress in all sorts of situations ignored because it was ‘autism’. To be termed ‘profoundly autistic’ increases these risks.
What if being autistic is what I am? Is what those children struggling at school are? Is what the person who does not speak and needs full time care is? What if it is all of these things? Then would we have to start asking what is causing the differences, if it is not a facet of being autistic?
Understanding Difference With Curiosity and Compassion
“There is an epidemic!” They cry, “We must stop it!”
“There is an epidemic,” I reply: “An epidemic of understanding, and long may it continue, with compassion and curiosity all the way!”
This article was first published on Disability Horizons Magazine. You can read the original version here: https://disabilityhorizons.com/2026/03/listening-to-autistic-voices-joanna-grace-on-understanding-the-autism-spectrum/