20/08/2026
This week has been a lot for many reasons, both in the news and things that will never be public.
But there is an overriding theme and unfortunately, it comes back to the default of many topical conversations: social media.
For a long time I have struggled with people’s talents or worthiness being decided by jobs, publishers etc. based on your following.
I’ve struggled with Instagram being less interesting and more homogenised, with AI-written posts (they ALL sound the same) and people’s faces.
I don’t like kids’ stuff being overshared by parents for their own gains.
I came off X when it became a billionaire’s grubby playground, and Facebook has loads of bots, trolls, you name it.
So LinkedIn, even though if I was to draw it, it would be a grey suit and lanyard, actually became a bit of a balance.
Somewhere to meet more like-minded people who want to discuss things, not a blue tick or sad crying face for more likes.
But recently something else has crept in.
And that is the plague of human beings: the ego.
The ego is something I try to actively avoid. I have no interest in celebrity status, who you are, what you do.
So this week, like I said, both personal and public news stories have highlighted something to me.
There is a debate floating around, lots of it, if you read LinkedIn on diagnosis, and much of it is coming from professionals about the value of diagnosis.
They get lots of likes from other professionals when they talk in this way.
And I have approached this with curiosity and asked several times: what are their concerns?
What if we end up with 98% of the country/world/planet being autistic or ADHD?
What are they worried about? Systems actually changing for the majority?
I can’t seem to get an answer.
And so, it leaves me, again with recent news stories, wondering about them.
Let’s flip this and shine the lens on the professionals.
Now this is by no means tit for tat. I am doing this for learning and curious reasons.
Professionals have gained qualifications and become in positions to ask these questions, ask big questions.
After all, they might even write big papers, write books, press articles, host conferences.
And they are also allowed, it seems, to ask families big, difficult questions because their status allows it.
This week I had one of those meetings, and the consultant lobbed not only questions but suggestions, not asked for and possibilities that were not only far-fetched but harmful, and not considered at all for their impact or their relevance.
Meanwhile, the grey suits and lanyards of LinkedIn were using a name for their own articles to gain traction.
A name a family explicitly asked not to be used while they grieve.
And so it got me thinking.
With these polarised and divisive debates that professionals seem hell-bent on having, even when we are all grieving this week, it is the same as when families sit in rooms and are beholden to off-the-cuff suggestions that wound and sting long after you leave the plastic chairs of the meeting behind.
Oblivion.
So perhaps what us, those lowly lived-experience people, are trying to do is create other spaces.
One where we hold each other, listen, talk safely and honestly.
Perhaps these ‘fashionable’ as it was called this to my face this week diagnoses we are all supposedly jumping on the bandwagon with are giving us new understanding, voices of our own.
Perhaps those who have sat in clinic for twelve hours or more a day have become desensitised, traumatised even.
So they are shut down and off. They are fearful of democracy. They want to keep their gate locked.
But they’ve forgotten many of us are not earning because of being carers. We need services.
We are not privileged to walk away from all these systems and live in a wooden hut knowing our healthy pensions from eons in big wig jobs will carry us and our children through.
Look, we don’t want to use these systems either. They suck. But we don’t have a choice.
We are banging on and down doors, not with golden tickets but with distress, and professionals meeting that distress with sleep hygiene suggestions.
They are, quite frankly, missing the mark.
And this week has shown a huge sector still oblivious.
Oblivious to what self-compassion has bought to those who are late diagnosed, oblivious to the countries grief as they use it for their own divisive articles.
And while there are many I meet who are wanting to do more and better, until those gatekeepers do their own work, as much as I see families doing to become vulnerable, open and curious to change, I can see the harm and division will continue.
So, I think for now I will stick to those places that are trying to level the playing field with lived experience rather than those who want to dismantle it.
Because maybe the problem isn't that too many people are getting diagnosed.
Maybe the problem is that too many people are finally finding the language to question the systems that weren't built for them.
And maybe that is the thing that makes people uncomfortable.
