September 2026
I’m not usually one to make grand overtures and public service announcements, so this is an entirely alien process to me.
Its driven by the fact that I have a situation that has reached a point where it’s harder to keep it private, than it is to say something publicly.
I’ve been trying to work out how to write this for a while, and I don’t think there is a particularly elegant way of doing it.
So:
Several weeks ago I was officially diagnosed with cancer.
More specifically, I have prostate cancer.
It’s high-grade and very, very aggressive.
Both the fact that I have it, combined with the aggressiveness of it, for someone my age (46), is incredibly unusual.
I am, as ever, an outlier. Lucky me.
At the time of writing this, the medical team are hopeful it is still contained to my prostate, and the intention of treatment and intervention is to cure it.
We are however, still waiting for the complete staging picture, and won’t know for certain until a surgical intervention happens.
There is no version of this which is small and I think that is partly why I’ve struggled so much with saying anything publicly – because despite having a very public profile, I am an immensely private person.
My passion for, confidence in, and belief in the need to change within the narrative and discourse of autism, neurodivergence and neurodiversity means that I can stand on a stage and talk to hundreds of people. I can write things read by millions. I can talk publicly about ideas, experiences, science, systems, professional practice, identity, trauma, stigma, and family life where it is relevant. Doing this probably creates the impression that I am a very open person.
I’m really not.
There is an enormous amount of my life and identity that is mine. That is Michelle’s (my wife). That belongs to our children and our family and is never mentioned publicly.
Having a public life is not the same thing as having a relatively publicly owned life.
So, I haven’t kept this news a secret, I’ve kept it private.
But there comes a point where maintaining that privacy starts requiring quite a lot of extra work, repeating myself over and over, and making excuses and pretending – which never sits comfortably with me.
The cancer was discovered by accident, via a random blood test for something else. I was effectively symptomless.
Had it not been caught when it had, by accident, but later: 6 months, a year down the line, I’d be using words like terminal. It’s that aggressive.
Since that initial test at the end of March there has been another version of our lives happening underneath the visible one, one soaked with distress and complete uncertainty, and because of this, we’ve even had points where we’ve had to tell clients what’s been happening before we’ve even been in a place to tell close friends or family members.
There have been appointments. Scans. Tests, and a biopsy which has left my body in a phenomenonally terrible physical state.
We’ve been waiting for results. Getting the results. There’s been more appointments. More scans. More waiting.
We’ve had endless conversations about treatment.
And endless conversations about what that treatment will take away from me, as well as what it might save.
All mixed with the fact that I am an intensely private person who is now having to share intimate details of my life with a large number of medical practitioners who are strangers, having to navigate people who do not understand how non-normatively my body reacts to and deals with things, of having to consistently use a voice which is unreliable at best and often absent, and more likely to be absent under stress;
And also mixed with the fact that I have been and am now being consistently touched by a large number of people, when touch brings me enormous pain.
And then there is all of the ordinary stuff that still has had to and continues to need to happen.
I have three children that still need parenting. Home educating them continues. In the midst of this exams have happened and my eldest has started college.
The world keeps spinning, so work still needs doing. Supporting clients. Emails arrive. Talks happen. Deadlines remain deadlines.
Food needs buying. Bills need paying. People ask if you are free in September or October or November or December or January or more, as though they are times and places you can confidently imagine yourself inhabiting.
So, I’ve kept going as best I can. I need to keep working where I can, for the distraction, for keeping my mind engaged and ticking over, for the money (which I hate saying)…
Sometimes I’ve achieved this quite successfully, and sometimes not.
Less so in the 6 weeks since the biopsy.
Physically, this has already knocked me sideways far more than I expected. I have moved from 7 weeks ago being symptomless, to now being wildly symptomatic.
This is partly due to the biopsy and partly due to the cancer making itself known. Dramatic, life-altering change in a such a short space of time.
My capacity is drastically nowhere near what it normally is. I am tired in a way that sleep doesn’t particularly solve (not that there is much sleep). I’m experiencing constant intense pain and discomfort. My concentration and wordfinding is unreliable. There are things I could ordinarily do without thinking, that currently take a ridiculous amount out of me. And much more in terms of physical medical stuff which I’m not going to talk about here.
And we haven’t even got to the treatment yet…
Of the small amount of people we have told, several have understandably found comfort in the fact that the cancer currently appears treatable.
“It’s curable.”
“They can get it out.”
And yes. That is enormously important. I want them to get it out. I want the word “cured” very much indeed. That brings me huge solace.
But I’ve also noticed how quickly “curable” can become the end of the conversation. As though somebody removes the cancer and stitches me back together, and normal service resumes shortly afterwards.
That isn’t what this is.
In this case curable, if it is curable, doesn’t mean a quck resolution to a temporary problem, and it definitely doesn’t mean consequence-free.
Due to the progressive nature of the cancer, I only have limited, major and drastic treatment options available to me. Any recovery is likely to be measured in months, if not years, rather than days or weeks. And they will likely permanently abd drastically change parts of my body and how it functions.
There are consequences that may improve. There are consequences that may not.
And there are things I may lose and not get back.
I don’t particularly want to itemise those things publicly. Some of them are intensely personal, and I don’t think anybody is entitled to that level of access to my body simply because I have said the word cancer out loud.
But they are real and life-changing.
I’m already, as an interim due to the impact of the biopsy, having to navigate an entirely new internal physiological landscape, in a body that, since I understood that I was Autistic, hEDs and a whole lot more, I’ve dedicated years to understanding and connecting with.
I’m navigating this post-biopsy and cancer-driven bodily change, while all the while knowing that this will all change again drastically, in the near future after treatment.
My body is not my own right now, and I’m not sure if or when it ever will be again.
Medical success means getting rid of the cancer, and obviously, that is the success I want, but success doesn’t mean emerging from this untouched.
I think that along with the sudden change in my situation from symptomless to life changing symptoms, probably one of the hardest things to get my head around, is that you can receive what is, in one sense, very good news, that there is a potentially a realistic prospect of a cure, and simultaneously be sitting in a room being told about the ways achieving that cure will likely permanently alter your life.
Those things don’t cancel one another out. I can be profoundly grateful that there is a route through this and still be terrified of what that route involves. I can want the cancer gone and grieve the things I may have to give up in order for that to happen.
And, of course, this isn’t just happening to me.
Michelle and I are having to hold both of those realities at exactly the same time.
Cancer might be in my body, but its consequences don’t remain there. It affects Michelle deeply. It affects our children deeply. It affects our relationships, our home, our plans, our finances, my work, our work, our sense of what the next few days, weeks, months, years, and the rest of our lives look like; and it affects quite a lot of things we had wrongly assumed were relatively fixed.
There are conversations happening in our house that I will never write about publicly. There are things our children are processing that belong to them. There are things Michelle is carrying that belong to her.
And there are parts of my own experience that I am simply keeping.
I am writing this now because, like I said, keeping all of it private has become harder than saying something, and it has and is already affecting my availability, my energy, my work and my ability to make plans with any certainty. It’s impacted our finances already and will continue to.
There will almost certainly be things I have to postpone.
There have already been people I have had to let down, and things that I have had to cancel.
There may be periods where I disappear completely.
We may take longer to reply to messages, emails and invitations. I may say yes to something and later have to say no. There are points over the coming period where I simply do not know what I will physically be capable of.
I don’t want to keep inventing explanations for that and I don’t particularly want other people inventing explanations either.
So this is the explanation:
I have cancer and it is literally deadly serious.
There is still a possibility it has metastasized beyond the prostate, but there is good reason to believe it can be cured. But getting it cured is going to be difficult, treatment and recovery will be measured in months, if not years, and getting there will not leave me with the life or body I had before.
Now that I have said this publicly, telling people doesn’t mean I have suddenly stopped being private.
I might write about this, but I also might not.
I might talk quite openly about one aspect of it and refuse to talk about another.
I may make a joke about something one day, and find the same thing completely unbearable the next.
I may answer a question. I may ignore it.
Please don’t interpret any of that as inconsistency.
I am trying to navigate something I have never had to navigate before, in a body that is currently doing all sorts of things I don’t recognise, while being a husband, a dad, running a business, still fighting for change, and somehow continuing to have a life around the edges of it all.
I don’t need miracle cures.
I don’t need cancer-warrior language.
I don’t need horror stories.
I don’t need anecdotes about Uncle Jim who had prostate cancer and was mowing the lawn three days later.
I don’t need it implied that I should be grateful because it’s not ‘this’, or ‘that’.
I don’t need to be told to stay positive.
What I do need, and what we as a family need, is patience.
Some understanding when I cannot do something.
Some grace when plans have to change.
And perhaps an acceptance that there can be genuinely good reasons for hope here, without pretending that what is happening to me is fleeting.
I am still here.
I am still working, where I can.
I am still writing.
I am still me.
But something enormous has landed in the middle of our lives and we are working out how to live around it, how to get through it, and what life looks like on the other side.
One of the things I have found unexpectedly difficult is kindness.
Not because it is unwelcome, but because sometimes it gets through the armour a bit too easily. A thoughtful message, somebody offering to help, somebody saying they are thinking of us, asking how I am, can undo me far more quickly than the practical stuff.
I am enormously grateful for it, but I don’t always know how to receive it, or respond to it.
Like with when I receive praise, sometimes it’s paralysing. Sometimes I can’t reply because I don’t have the words, sometimes I can’t work out what help would actually help, but don’t know how to say that, and sometimes an offer is so kind that acknowledging it means getting a little too close to the reality of why it’s been offered in the first place.
So, if any form of kindness is met with silence, awkwardness or a very delayed response, please do not read that as indifference or ungratefulness. Mostly it means the opposite. It means it probably landed somewhere I wasn’t quite ready for or wasn’t able to process.
Whatever happens, whatever the outcome of this. I don’t think I will come through it entirely unchanged, mentally and physically. But I’m also determined that I’m going to continue doing the work I do, and that I’m not going anywhere (unless a 3-month convalescence trip to the Maldives is on offer!).
Thank you for reading, and thank you for your kindness.
Kieran
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