Get a life, get a label

What's the real reason behind the growth in ADHD and Autism diagnoses in older women? And if medical diagnosis isn't the answer for us crones, what is?

Me in 2018 in France creating a website with my recently diagnosed pal Vic to celebrate the joys of our autism and ADD diagnoses.

It was a scorcher of a day in the summer of 2017, and there I was, sweating buckets in a psychiatrist’s waiting room, wrapped in what I now realise was a very wintery jumper. But it was soft. Comforting. My go-to safety blanket.

Fashion faux pas aside, I wasn’t just sweating from the heat—I was about to find out whether after a lifetime of feeling like I was doing life with one arm behind my back with the wrong operating manual, with all of the accompanying years of shame and exhaustion — had a name. A medical one.

A few sessions, a lot of money (thanks mum), and one psychiatric checklist later, came the verdict:

“You are extremely high functioning and very bright. But yes—I believe you have an autistic spectrum disorder.”

I wanted to weep. Or launch myself across his mahogany desk and kiss him. Deeply. Inside, I felt something shift: a giant wave of relief, self-forgiveness for all the things I’m so shit at, and the sense of relief that all that secret peddling behind the curtain could finally be over…

In 2018 I wrote a blog called ‘Get a Life Get a Label’ which celebrated the joys and relief of my recent autism diagnosis. Together with my mate Vic, we went to France on a writers residency at Studio Faire to set up a new website ‘Wonderfully Wired Women’ to share the new found benefits of our neurodiversity.

With the assistance of copious buckets of local rosé, we made podcasts where we replayed our difficulties through our new lens. Sadly, the podcasts were short lived due to the amount of time needed to edit them. Within seconds we were both off topic, talking excitedly over each other at speed, making us both feel so exhausted at the very thought of editing them, that we went off to drink more rosé instead. Of all our superpowers, the ball-aching task of cutting things down and finishing things off, is definately not one of them. (This edition of TTTW for example, has taken three weeks to cut down from the first draft of 31 pages!!!)

On our return to blighty, we continued spreading the word in other ways so women with similar self-loathing for their failures could enter this glorious world of self-forgiveness too.

Naturally, I threw some ‘coming out’ lunches to share the big news. My friends were warm and supportive, if slightly too unfazed.

“Oh! We just assumed you were bipolar.”

Alrighty!

In October 2019 I leaned into one of my biggest fears, public speaking. I did a TEDx Talk on how my autism diagnosis saved my life after the Brexit vote crushed me, and made a plea to empty all our ‘broken pieces’ onto the table, and get curious about each other.

You can watch my Ted Talk below. I hope it gives you some insight into the benefits of a medical diagnosis for older women, makes you smile, or at the very least, feel better about Brexit.

In 2022 we ran the ‘Crone Spoken Library’ with the University of Sheffield as part of Festival of the Mind. Both myself and Vic were two of the ‘human books’. The title of our ‘book’ was ‘Does getting a diagnosis in later life help you age better?’ It proved so popular, that there was even a fight over who got to ‘read’ us!

The response to all this was overwhelming. It more than justifies the widening of the diagnostic net to ‘women like us,’ as women told us how they had been inspired to seek out a diagnosis and how it had changed, even SAVED their lives. And not just women—men too. One messaged to say male suicide had haunted his family for generations. After getting his diagnosis, he felt sure that his dad and grandfather had suffered similarly, and that a diagnosis could have changed things.

Now, as the numbers of women seeking a neurodiversity diagnosis rise, here comes the backlash...

Fast forward eight years and the number of people in the UK awaiting an autism or ADD diagnosis has risen ‘exponentially’ and after years of austerity, our creaking NHS is struggling to cope. (‘NHS accused of ‘abject failure’ on ADHD as 550,000 await assessment in England. Campaigners say failings have ‘ruined lives’ after figures show up to 2.5m people in country could have condition. The Guardian, Friday 30 May 2025).

You might even be rolling your eyes right now thinking:

“Ugh, we ALL struggle. Why does everybody need a label?”

Or maybe you’re the parent of a child with profound needs, and feel that stories like ours water down the seriousness of more extreme autism.

Or maybe you're a GP, groaning that women like us are clogging up waiting rooms, when there are people with ‘actual’ illnesses to treat. After all, you got by for 40+ years without a diagnosis. What’s changed?

And honestly? I get it. And if we’re being totally honest, the waiting list situation is only going to get worse. The Autism Curve on Radio 4 (part 1) reports that in 2018 there were still an estimated 1.2m people with undiagnosed autism in the UK. And now the net is being cast even wider as work is underway to create a Diagnostic and Statistical Manual of Mental Disorders (DSM) that is ‘more inclusive’ for women.

But where I think we’ve failed to be really honest about is WHY so many women in midlife are seeking an ADHD or Autism diagnosis, especially as it rarely leads to benefits or free support (spoiler - it really doesn’t).

Here’s a few thoughts…

Why are the numbers of women in midlife seeking an ADHD / Autism diagnosis exploding?

1. A change in how we count things, and who we count.
   Radio 4’s ‘The Autism Curve’, partly attributes the rise to historical ‘miscounting’, particularly amongst older people, women and people of colour. This is not that surprising when the originators of our understanding of autism in the 1940s -Kanna and Asperger - were both men, who based their observations on studies of males, and therefore described how these characteristics showed up in, erm, males.
   
   Girls, on the other hand, were being attributed psychological labels such as social anxiety, OCD, Emotionally Unstable Personality Disorder / Borderline Personality Disorder for the same ‘symptoms’.
   
   Inevitably, research and training has continued in line with this self fulfilling prophesy…Until recently. More women are involved in the research field which has started to change things, such as rolling ‘Aspergers’ into ‘Autism’ in the DSM 5 diagnostic manual, as a well-meaning attempt to de-stigmatise autism.
   
   Sarah Hendrix, author of ‘Women and Girls on the Autism Spectrum’ says she is now seeing more women presenting for diagnosis than any other demographic. She believes women are now ‘playing catch up’ and puts that down, in part, to their kids getting diagnosed. When your child gets a diagnosis, ‘bells begin to ring’. The apple doesn’t fall far from the tree.
   

2. You have to ‘see it to be it’ - the rise of The Chris Packham effect
   The rise of ‘high functioning’ and much loved celebrities, along with ‘everyday’ women like us telling our stories about how autism or ADHD shows up in our lives, has most definitely had an impact in the rise. ‘You have to see it to be it’, after all.
   

3. Crones don’t take ‘no’ for an answer
   As the health inequalities for women and people of colour are finally becoming better acknowledged, by the time we hit midlife, we’re not going to be fobbed off any longer. I wonder how much of my determination to get a medical diagnosis was about feeling really LISTENED to by someone in authority. With the austerity cuts to the NHS, this type of LISTENING just isn’t possible in your three allocated minutes of a GP consultation which is limited to a single issue.
   

4. Peri-menopause exacerbates the ‘symptoms’ of neurodiversity - midlife is the perfect storm.
   Midlife brings us more plates to juggle at a time when peri-menopause can make us feel at our least resilient. If you have kids, there’s a good chance they’re still at home, our parents are aging or dying, our jobs are still demanding and retirement looking increasingly unlikely. Add peri-menopause to the mix, and boom. Even the most competent of swans can’t juggle all those extra plates AND hold onto our mask at the same time. The symptoms we’ve spent decades suppressing become harder to hide.
   

5. Over medicalisation of behaviour traits, menopause and ageing.
   We love to medicalise things, so we can have ‘a reason’ to point to. Indeed, one of reasons for setting up Crone Club and this Substack, was to combat the over-medicalisation and fear-based narrative of menopause and getting older.
   
   “In the context of an ageist society, it makes sense that loss of mental and physical agility be turned into something medical in the hope that a doctor might be able to reverse its course and, if that isn't possible, that signs of ageing might at least be forgiven by the power of a medical label. An expectation of constant good health, graceful ageing and an obedient body and mind has left people unprepared for those ordinary bodily declines that affect us all.”
   Dr O’Sullivan, ‘The Age of Diagnosis.’

   
   Is this over medicalisation really helping us, or just another distraction from the natural process of ageing and our inevitable death?!

So if the solution isn’t more medical diagnosis, what is it?

“To solve the over diagnosis epidemic multiple parties need to make changes. We, the public, need to accept the limitations of medicine and contain unrealistic expectations of what a diagnosis can achieve. We need to be kinder to ourselves when we fail and accept our many imperfections.”
Dr Suzanne O’Sullivan, ‘The Age of Diagnosis.’

The quest for human perfection is an illusion, so maybe our real work is to learn to live with what and who we are and be more compassionate to the failings of others. Society is increasingly toxic, binary and polarised. There is no room for nuance, only an unattainable expectation of perfection. Perfection of how we look, how we behave…

Maybe what we are actually seeking is the permission to be imperfect in an unforgiving world. We need to seek out alternative ways to address the need for better recognition of suffering and to reduce stigma of imperfection. I hate this binary ‘othering’ that is so prevalent right now, but after reading Dr Suzanne O’ Sullivan’s book: ‘The Age of Diagnosis’, I realise that I may have been doing exactly that:

“The medicalisation of human experience and over-inclusive diagnoses don't reduce stigma. They promote intolerance by othering; by dividing the world into neurodivergents and neuro-typicals; by turning anything but optimal ageing into a disease...”

It’s easy to blame the right for the toxic polarisations of the modern world, but as

Stella O'Malley

rightly points out in her recent Substack, the ‘Woke’ are just as intolerant of imperfection and can be even more unforgiving of mistakes.

“And here’s the thing about the woke mindset: they never forgive… there is no room for context. No space for strategy. No allowance for learning or evolving in light of new information. There is only the permanent stain of ideological impurity.”
Stella O'Malley

This brings us closer to what I feel is the real underlying reason for the increase in midlife women seeking a diagnosis of Autism and/or ADHD - seeking permission to not be perfect and the confidence to ask for small changes to help us participate fully and perform at our very best bat-shit genius selves.

For me, a medical diagnosis gave me permission to stop hiding and apologising for the things I will probably always fail at.

Permission to drop out of the corporate job that made me feel like shit, pursue my area of ‘special interest’ and build a life around my ‘superpower’ by setting up Crone Club and writing THIS!

Permission

to

be

Me.

Specifically, what can we all do?

“Let's leave diagnosis for those who are unequivocally sick and find a way to be more tolerant of difference and imperfections that still allows people to live an unencumbered life."
Dr Suzanne O'Sullivan

But how do we actually DO this?! Here are a few ideas, but I’d love to hear your thoughts in the comments at the end of this article.

Medics and researchers

In the world of medicine, O’Sullivan urges a return to valuing the ‘Generalist’ medical practitioner - someone who sees ‘the whole person’ who is in a better position to notice when “too much diagnosis and too much medicine has started to make a person worse instead of better.” We need to recognise the limitations of what ‘medicine’ can do for us, and move away from our love affair with specialisms. As the old adage goes, ‘when you’ve got a hammer, everything looks like a nail.’

I’d also love to see better research into the benefits of late diagnosis for women and how benefits are measured - eg by how many lives it saves, less time off work, quicker bounce back, reduced pressure on mental health services etc.

Politicians and leaders

👉 Put more money into the NHS rather than selling it off, so that GPs can have longer than 3 minutes to REALLY listen and get a picture of the whole person.

✄ Instead of CUTTING benefits like the Personal Independence Payment (PIP) and making it even HARDER to get support through schemes such as Access to Work, put MORE money into these schemes so that MORE people can live and work independently. This would increase productivity by keeping people well thereby reducing pressure on the NHS. The world needs the radical, creative thinking of neurodivergent people now more than ever, but to facilitate that, we need just a little bit of mundane support behind the scenes.

💡 When I worked at the creative agency, we user-tested many of our websites at the Royal Society for the Blind because my boss Mark said “If you make a website accessible for blind people, you make the usability of the website better for EVERYONE”. Imagine if we made our buildings, our workplaces, our society work better for neurodiverse people, then we would actually making the world better for EVERYONE. Surely this would make the need for us to seek out a medical diagnosis that flags up ‘our differences’, less urgent?

Creatives, social entrepreneurs and community leaders

“In a culture that expects success and physical perfection, diagnosis has become a means to account for anything less. Success is not achievable every single time for everyone. A culture of telling people they will get there if they just keep trying isn't.”
Dr Suzanne O’ Sullivan

As social entrepreneurs and community leaders, we need to continue to find creative ways to encourage empathy and facilitate discussion. We need to hold more safe spaces such as Women’s Circles and our ‘Crone Spoken Library’ where people feel listened to, and HEARD, and make these spaces more accessible to everyone.

We need more art, culture and media that encourages compassion and forgiveness, rather than escalating binary ‘othering’ - art that helps us walk in the shoes of others and shows what a fairer society could look like.

We need to create alternative narratives of success and make stories that move away from the perfection myth in all areas of life - physical perfection, the perfect menopause, the ‘perfect’ ageing. (Check out Cathi Rae’s guest TTTW article where she asks if the age positive movement is actually part of the problem).

Religious and spiritual leaders

“People are struggling to live with uncertainty. We want answers. We want our failures explained. We expect too much of ourselves and too much of our children. An expectation of constant good health, success and a smooth transition through life is met by disappointment when it doesn't work out that way. Medical explanations have become the sticking plaster we use to help us manage that disappointment.”
Dr Suzanne O’Sullivan

Religions and spirituality practices have a valuable role to play too, by reminding us to accept how things ARE rather then how we want them to be and how to deal with uncertainty and help us manage disappointment and reframe our unrealistic expectations of reality!

And finally, as crones - instead of reaching for a medical diagnosis, what can we do instead?

For many of us, midlife and menopause represents a shedding of our old identity… and the search for a new one. In the four years I’ve been running the Crone Club Facebook Group, and in the two years I’ve been writing this Substack, I’ve noticed that I’m clinging less onto my autism identity as a life raft, and am instead replacing it with a new identity - that of ‘crone.’ The crone identity shares so many qualities to which the aspirant autist aspires - from permission to say no, to unapologetically being our ‘different’ selves.

But practically, what does this actually mean?

In the course of running Crone Club and writing TTTW, a number of ‘interventions’ are emerging that seem to be helping us step into our third act and find our ‘crone identity.’ Here are a few things we can all do as crones:

• Find your tribe and build a supportive sisterhood that allows for imperfection and moves on quickly when you fk up.

• Hold safe spaces where women can be 100% themselves.

• Use ritual and gatherings to ground us and connect us with the past - help us gain perspective, and come to terms with uncertainty.

• Make mischief and use our creativity to create and flood the mainstream with alternative narratives from multiple voices, stories that explode binary ‘othering’, and appreciate nuance and context.

• Get curious. Curiosity is a trait I’ve found present in all the crones I most admire, and if you got to the end of my TED talk, you’ll see it closes with a plea to ‘get curious’ about each other’s ‘broken bits’, rather than trying to ‘win’ an argument at any cost.
  
  So maybe the answer isn’t medicalisation. Maybe it’s radical acceptance of imperfection. A crone has the wisdom to know that ‘perfection’ does not exist, and she certainly no longer feels the need to seek permission from the patriarchy or medical establishment just to be her beautifully imperfect self. After all:

a true crone

anoints

herself.

Links and further reading

‘The Age of Diagnosis’ by Dr Suzanne O’Sullivan is a hugely compassionate book, definitely worth a read as you can probably tell by my multiple citations! Huge thanks to our Jules for the recommendation!

‘Women and Girls on the Autism Spectrum’ by Sarah Hendrix

The Autism Curve BBC Radio 4

For validation of crone identity and ritual - check out Crone Ann’s piece on Crone Crowning and Croning Ceremonies.

For glorious safe spaces to be our bat-shit crazy selves - read about our afternoon disco, ‘Cronelines’ - part 1 here, part 2 here.

For creating spaces where older women can be listened to - REALLY listened to - read about the Crone Spoken Library here.

For those readers in the Sheffield area who fancy trying out a Women’s Circle, book onto our next Crone Club Meet Up in Hillsborough, where Johanna will be running a Women’s Circle taster. There’s also a Tits to the Wind Skinny dip in June at a secret squirrel location 🐿. Register for Crone Club Sheffield to get the email!

For a great example of a more realistic narratives of menopause and ageing - check out Crone Cathi Rae TTTW article ‘Age Positivity movement - are we part of the problem?’ and Juzza’s camper van experience - be careful what you wish for.😂