22/04/2026
The Grief no one speaks about!
Late Diagnosis of Autism and ADHD in women and non binary AFABs
Written by me
Grammarly was used for spelling mistakes and punctuation only.
English is my second language.
During the pandemic people started to ask me, if I had ADHD. I said ‘Of course not, I don’t even know what this is!”
Then a physio over the phone was like: “Has anyone…” “YES!!!”
So I started to read up on ADHD, joined Facebook Groups and arrived at the same conclusion as the people who had asked me.
A lot of my life experiences seemed to make more sense.
It took me another 6 months to get my head around the Right to choose. (This is a service which is available in England but not Scotland Wales, or NI, where private providers, who are commissioned by the NHS to do autism and ADHD assessments, including titration for ADHD medication)
I was finally diagnosed in February 2022 with ADHD.
I grieved for 6 months.
Because I realised that a lot of situations I was either punished for or bullied were in fact the result of my disability.
I could have gone to university. I had collected the enrolment form. I had the right A-levels. But I thought, you do everything last minute, that won’t work for uni.
The times my dad made fun of me, when I got so excited and spoke fast and he laughed at me and compared me to a waterfall.
It really hit hard.
After a few months, I was at the top of the medication queue, and for the first time in my life, my brain was calm.
Unfortunately, in August 2022, I became ill with Covid, which turned into Long Covid, which increased my blood pressure, and this was the end of medication.
After my blood pressure normalised again a couple of years later, I became ill with glaucoma and when you have that, you are not allowed to use any stimulants ever again.
We tried non-stimulants for a while, but they didn’t work, sadly.
There is also grief in the experience of people who can take medication. We expect that it’s the holy grail and will solve a lot of problems.
Unfortunately, although medication can really help with cognitive function, it’s really challenging to find the right medication, the right dose, and there are still a lot of areas in your life that still don’t work as you would like them to work.
In 2023, I was diagnosed as Autistic level one.
I didn’t grieve as much, but it was still a bit of a shock.
I watched Rain Man with Dustin Hoffman in the eighties, and that was my idea of an autistic adult.
Not me, who can communicate, and who just seemed to be a really weird person, who never fitted in, and blamed herself for being bullied a big chunk of her life.
An interesting phenomenon is that once you are diagnosed, you might experience skill regression.
I think the reason for this is that we notice how much we have masked in the past, and finding your tribe and realising that you are not just weird, you have an acknowledged disability, puts the brakes on the masking.
The psychiatrist who diagnosed me as autistic also mentioned that the ADHD often overshadows the autism, and once you understand what is going on, the autism is more prevalent.
So far, I mentioned grief of what could have been, the chances I missed, the behaviours I was punished for, instead of receiving support for being neurodivergent.
But it doesn’t stop there.
You keep reading and researching and start to understand that this world wasn’t built for us.
You read about the low number of autistic people in the workplace.
You become aware of the lack of support in society and at work.
You learn that it’s not a phase or a trend, it’s a lifelong condition.
You experience that people will criticise you for wanting a diagnosis, saying you are just following a trend, or that we are all a bit autistic or have ADHD, because “yeah, I forget things”.
You feel the disappointment and anger of being dismissed, just like in your childhood.
And you can’t go back in time and wave your diagnosis in people’s faces, shouting: “IT WASN’T MY FAULT.”
You either realise or are told that the mental health issues you were diagnosed with, which could be bipolar, borderline personality disorder, depression, anxiety, were actually results of being overstimulated, masking, burnout, and you were taking medication for mental health issues you never suffered from.
You would have benefited from different support, and even the therapies you were offered didn’t work, because they were for neurotypical people and not for an autistic person.
I am glad I got diagnosed. It helped me understand myself better. I felt more confident joining neurodivergent groups and spaces, although self-diagnosis is totally accepted there.
It helped me to access support from organisations which require an official diagnosis.
There are a lot of good reasons to pursue being diagnosed if you suspect you are neurodivergent. And btw, autism and ADHD are only two types of neurodivergence.
And there are good reasons for people not to pursue a diagnosis.
Even using the Right to Choose way, the waiting times for an appointment are getting longer and longer.
People have reported horrific experiences, especially when going down the NHS route, where they were dismissed and belittled.
They already know, they don’t want to take medication and don’t see a point in getting diagnosed.
You don’t need to be diagnosed to receive help from Access to Work.
But like often in life, no matter what decision you make at some point you are just expected to get on with life and manage it yourself.
But isn’t that just part of being an adult?
I am not only neurodivergent, I am also chronically ill and use a wheelchair.
The lack of support for me being autistic and having ADHD for me can be compared with when the wheelchair service wouldn’t give me an electric wheelchair, although they acknowledged I needed one to go outside.
The rule is that if you can self-propel inside, then you are only entitled to a manual one.
The fact that it means you can’t go outside without another person doesn’t seem to be of interest to anyone.
It doesn’t help that experts in autism and ADHD are now criticising the increased number of diagnosed people (mostly women and non binary AFABs) without acknowledging that we have been failed by the medical world in all areas of medical care.
There are good reasons why the number of people seeking a diagnosis has increased.
For me, it was the onset of menopause that stripped the scaffolding away, and it just became so obvious to the people around me.
For others, it’s that their kids get diagnosed, and they think, " But that was me when I was little".
People sharing their lived experience in Facebook groups and other social media platforms help people to recognise themselves.
That is how I found out I am autistic. Did several tests and in the end thought, how did I miss this?
We are finally heard, feel finally seen, and then are told, oh everyone wants to be diagnosed as autistic or having ADHD these days.
There is grief mixed with anger, because we look back at our life at all the missed opportunities, the struggles we had, the loneliness we experienced, the bullying we endured and what should be helpful is now being challenged.
If you feel seen and heard with my story, and you went several times, yes, that resonates, yes, that was my experience, then I hope that knowing that you are not alone in this helps you process your grief that comes with a late diagnosis of autism and ADHD.
And if you have not been diagnosed, and my writing doesn’t give you hope that you should pursue this path, then please reach out to people for support.
I am happy to answer any questions, and I hope you have people around you who can share this journey with you.
Don’t give up. You deserve all the support you should have always had, but never got.
