Adult diagnosis

what difference does a label make?

| skwarepegrowndhole

I promise this blog won’t end up being just about me and ADHD, but this is another ADHD post!

It’s just over 3 months since I had the official ‘yes, you have ADHD’ conversation, and I can honestly say that is has had a huge, positive impact on my mental health. I obviously haven’t only had ADHD for 3 months, I have had ADHD for the past 53 years so the diagnosis and label didn’t change that at all. The diagnosis didn’t make it appear, it didn’t make it more or make it ‘worse’, but the diagnosis did change how I feel about me, and how I deal with how I feel.

For 53 years, I felt that I wasn’t enough, but I was also too much. I replayed conversations in my head over and over again. I had to stop myself butting in to conversations and finishing other people’s sentences. I felt I had nothing to say, but also had everything to say. People walking too slowly would make me stim, and if someone took to long to explain something obvious, I know my facial expression would show my boredom – this isn’t to be confused with conversations that start with one story and quickly deviate off to all kinds of unexpected places. These are my favourite conversations.

I still replay conversations, I still get fed up with people walking slowly, I will want to butt into conversations and feel all the feelings, but now I know it’s not because I’m broken, or because there’s something wrong with me. I have a brain that is whizzing at 100 miles an hour, focusing on everything and picking up on things that others may not. It’s not a superpower, but it’s me, and I am not broken.

Over the years, I have had multiple conversations with people who don’t want a label or a diagnosis, and I’ve written before that a diagnosis is a lens rather than a label; it allows other people to see and to understand, but I now understand how it also allows us to understand ourselves.

I remember when our eldest had his ADHD diagnosis, and he said it was a relief to know that he wasn’t going crazy, and that it was something that had a name. As well as allowing us to understand him a little more, it allowed him to understand himself. As he’s grown older, but before he left some, he sometimes told me that he may be having an ADHD week, so could I break things down into smaller chunks or instructions, and give specific times that things needed to be done. It could be ‘washing in the washing machine by 9am on Saturday’. This was a direct instruction with a deadline. It made things a little easier for both of us.

I understand the ‘ADHD weeks’ too – some weeks things seem to be more chaotic than others, and when they are like this, I have started using lists in my phone. I have to add a couple of things that I’ve already done so I can tick them off, as this makes the list less daunting, and also gives me a bit of a dopamine hit. I am also more honest about what’s going on with my thought process. In the past, if things didn’t go the way I expected, or if I was upset by something, I would clam up, but then be off with people close to me. Now I explain why I am feeling how I’m feeling, however obscure these feelings may seem when I say them out loud. It’s helping others to understand me, and stops me being stroppy or grumpy over something that can be resolved or understood.

Some have asked me if it was worth going to see my GP and then waiting 15 months for a diagnosis when I am in my 50s. Yes, absolutely yes. I had imposter syndrome about self diagnosis – was I just making excuses, and was I almost belittling the things that people who ‘really’ have ADHD go through? It has been liberating – and also explains why we missed so many signs and behaviours that our children had when they were younger. Your son putting a staple through his finger at 7, just to see if it would go through, doesn’t seem that odd when you did the same thing at the same age.

That saying, many are happy with self diagnosis, and that’s fine. I’m not saying everyone who thinks or knows they have ADHD or are autistic should go and get a diagnosis. It’s about doing what’s right for you.

For me finding out that I definitely have ADHD has been a game changer. I’m not on any medication, it hasn’t changed me that much, but it has allowed me to be kinder on myself, to explain how I’m feeling, and to rest when I am close to burn out.

Do I wish I had found out sooner? I’m not sure. I wish I could go back and hug my younger self and tell me everything would be ok, but I love where I am now, and finding out may have altered my course and led me somewhere else.

I feel I found out at the right time. I have ADHD, my brain is different not less, and I like it.

DIscovering me

| skwarepegrowndhole

On the 1st March 2025, I was officially diagnosed with ADHD. I was 53 and 3 weeks old.

I knew I was, deep down, but there was still doubt. I self diagnosed a few years ago when we were going through diagnoses with our children, but I didn’t tell anyone that I thought I was for ages, as I felt like a fraud. I was jumping on their bandwagon. I couldn’t have ADHD as I was a woman in my 40s. I was just a bit scatty, very messy, had lots of hobbies that I’d started and then got distracted, often felt like I didn’t belong, and the fact that I left everything until the deadline panic hit was because I was lazy.

In January 2024, inspired by a friend who had been diagnosed as an adult and had found it liberating, I spoke to my GP and then the practice mental health nurse, and using NHS ‘Right to Choose’ I was referred to Psychiatry UK and put on their waiting list (I wrote about this last year, to read the post click here). Just over 13 months after my appointment with the nurse, I had my assessment online.

I didn’t know what to expect, which sounds still as, at his request, I sat in with our youngest when he had his assessment. I was really nervous. The doctor was nice, tried to put me at ease, and then he started asking questions. Some of my answers surprised me – one was about how I did at school and in later education. I can’t fail, and I won’t fail. This isn’t because I’m a genius, it’s because I can’t. If I think I’m going to fail, I quit. And if I do a course, I have to do my absolute best and come as close to the top of the class as I can. If I can’t do well, I won’t do. The doctor seemed very interested in that!

Another question I remember clearly was what would I do if all the things on my to do list were completed. If I woke up tomorrow without any spinning plates (my words here, not his), without anything I wanted or needed to do, how would I feel.

I panicked.

I could not (and cannot) imagine having nothing to do.

I must have looked terrified as I stuttered ‘I don’t know. I have no idea. I can’t begin to imagine what that would be like’ as he told me not to worry and we’d move onto another question.

At the end of the assessment, he told me that there is no doubt whatsoever, I have ADHD. The assessment ended, I told my family, and then I went and curled up on my bed, and I cried.

I cried for the 14 year old me who watched the popular girls at school in awe, not knowing how to be like that. I cried for the younger me who always felt like an outsider. I cried for the me who couldn’t get her written work to match her classroom knowledge. I cried for me now, only just beginning to understand that I was never broken, I wasn’t an alien, and I was always enough.

Eight weeks on, and I’m still doing lots of self-reflection. I’m now seeing where I have masked and camouflaged, and I’m still not entirely sure how I can free myself of masking – and I’m pretty sure I will always camouflage and mirror, especially in social situations.

I don’t necessarily wish I’d gone for diagnosis earlier as I am happy with where I am and who I am, and even if I did regret, it wouldn’t change anything. However, I wish I could go back and hug my younger self and tell me it will all be ok. I also wish I could go back to when our children were little and realise that the behaviour I saw as normal wasn’t normal for everyone. It’s hard to see atypical behaviour when in your world it’s typical. But I didn’t know then, and I have to forgive myself.

This brings me to getting a little political. In a week when RFK Jr has talked so negatively about autism in the US, and Farage as spoken about over diagnosis in the UK, it’s important to remember that there hasn’t been a huge increase in neurodivergent conditions, we’re just beginning to see them. When I was at school in the 1980s, nobody talked about ADHD, and it definitely wasn’t something that would affect an academic, well-behaved girl, so I was missed. There is a meme on social media saying that before 1930, nobody knew about Pluto – but it was still there! It didn’t suddenly appear, it just hadn’t been seen or discovered. It’s the same with ND conditions. And as they usually have a genetic link, quite often a child is diagnosed, and then the parent(s) have a lightbulb moment, and also get assessed – and then you look at other members of the family who were seen as being a bit ‘quirky’, and suddenly it all makes sense.

ADHD, Autism and other ND conditions are not diseases, they are not caused by vaccines, they are not caused by chemtrails or anything else like that. They are a different way of thinking, being and processing. We are different, not less. We have been here since our ancestors came out of Africa, and probably before that. We’re just not hiding any more.

And now it’s my turn

| skwarepegrowndhole

I am 52 years old, and I have always felt like I was on the outside looking in. Unless I am really comfortable in your company, I feel awkward in social situations. I am so messy, I go from one hobby to another, I lose my keys, bag, glasses, phone on an almost hourly basis (and I regularly look for my phone while talking to someone on said phone) and I never feel that I am enough, or that I do enough.

Don’t get me wrong, I have self confidence & self belief. I know my value, and I know that I am good at my job, that I can do almost anything I put my mind to, and I am a fixer (clothes, fencing, DIY, people…), but I often feel that I am different. It’s my normal, and I just thought it was one of those things. Then I had children who ended up being diagnosed with ADHD, ASD and dyslexia and I started to wonder. Both of them are now seeking adult diagnoses for other conditions, and I felt that, ever so slowly, that maybe, just maybe, there was a reason that I felt how I felt.

I read lots of articles, looked into the epigenetic basis for neurodivergences, and so I started saying ‘I think I have ADHD’. That felt ok, I didn’t feel like a fraud, so then I said I was self diagnosed with ADHD. Again, it felt ok. However, it still didn’t feel enough. Some people raised an eyebrow, but I am my own worst critic. On dark days, I doubted self diagnosing. I felt I was just making excuses for a messy house, for not completing tasks, for feeling overwhelmed with life, for having a burn out day. Self diagnosis wasn’t enough. I needed to do more.

Inspired by my children, I did a few more online assessments, and then I emailed the GP. I had a phone consultation with the mental health nurse, and then through NHS Right to Choose, I was referred to Psychiatry UK back in January.

I heard nothing, so my self doubt came back. Maybe I didn’t have enough symptoms to be referred, maybe it was all just in my head and I was just a very a scatty messy person. I messaged the GP admin people who said they would look into it, and still I heard nothing.

And then today, I had several emails, one of which contained the following sentence:

Great news! We have reviewed and accepted your referral for your ADHD assessment.

I almost cried. My referral has been accepted. I am going to get an ADHD assessment. I am not broken. I am finally going to get an answer.

I read the following poem recently on Insta, it’s by Jessica Jocelyn (letters.to.anna on Insta), and it sums it all up so well.

behind every late diagnosed woman

is a little girl

who knew this world

was never made for her

but could never explain why.

I have supported my children through their battles, and I will continue to do so, but now it’s my turn. I need to support myself, I need to be kind to myself, and I need to battle for myself as I have battled for everyone else.

It’s my turn now.

And now it’s my turn.

| skwarepegrowndhole

I advocate for people, I tell parents how a diagnosis is a lens not a label and it allows children to be seen and understood. I tell them that the ADHD/ASD is always there, it’s just a diagnosis opens a door to understanding and help. And yet when it came to me….

I self diagnosed with ADHD several years ago – part of the reason why we didn’t look for an ADHD/ASD diagnosis when our children were young as we didn’t really see anything different about how they behaved or learned. They may have been a little more intense than we were as children, but the things I used to do (pluck quilts, draw on anything, take things to bits, climb anything and I was a rubbish sleeper) and to some extent still do (although I’ve only ever plucked on feather quilt) were pretty much what our children did.

So why only self diagnosis? Maybe because ADHD wasn’t a thing when I was growing up, especially not for girls. Looking back at my school reports that frequently talked about how good I was in the classroom but how my homework and written work didn’t quite match, and how I could be argumentative and was good at debates, or thinking about how I used to be dared to distract the English teacher on Friday afternoons in 6th form so we could have a discussion rather than a lesson, it’s clear that the signs were there at school as well as at home.

But it just wasn’t a thing – and I did well in education. I passed all my GCSEs and A-levels, even if my grades were not as good as predicted. I then decided not to go to university at 18, and several jobs before getting married and then having our eldest. I went to uni as a mature student with a toddler who didn’t sleep, a husband who worked long hours, a night sitting care job 2 nights a week and an hour commute to university. Spinning plates is a understatement, but my hyperfocused mind just did what it needed to do, and I graduated top of my class.

When I started teaching, I taught whatever I was asked to teach, and I was good at it – I’m still in contact with so many students (hello if you’re reading this), and I did my teacher training while I was teaching (which is common in colleges). I then started a part time Masters degree while teaching and co-running a business and now with a toddler and a 10 year old, neither of whom slept. Spinning more plates, but I did it, and came top of my class again.

The more I have to do, the more I thrive. Today I am a curriculum lead in a small special school, I blog, I have written & self published my first book, and am now working on a book proposal to traditionally publish my second. I live on a small holding and my husband and I are setting up a brewery. We still have our family IT business and I do the accounts for that. Our youngest is struggling with uni life so I am on tram transport 2 or 3 days a week. And on top of all that, I’m doing a self funded part time doctorate. Spinning plates – again!

So what gives? Well, I’m messy. Our house is never spotless, and is often verging on feral. I have so many unfinished books and crafting projects (because I need to have a hobby on top of everything else) and sometimes – probably much more often that I think – I am grumpy and moody.

So, yeah. Self diagnosed ADHD, but I say it almost as a joke.

Not any more. A couple of weeks ago, after helping our youngest fill out his form/test for ADHD referral, I decided to take the test myself. On the ADHD Self Report Scale (ASRS v1.1) Symptom Checklist there are 18 questions. I answered honestly, and I ticked 17 out of the 18 boxes.

I decided self diagnosis wasn’t enough but I know that our GPs our incredibly busy, and I didn’t want to take up an appointment, so I emailed saying that I thought I might be ADHD, and could I maybe talk to someone about the possibility of maybe getting a referral. I tried to make it as ‘sorry to bother you and don’t worry if I can’t’ kind of language.

A text came back within an hour offering me an appointment with the mental health nurse. I felt a huge weight start to lift off my shoulders. Unfortunately the first appointment was cancelled because the nurse was ill. I had the phone call at work, and I cried on the way home. That weight of spinning plates was pressing on my shoulders again. I only had to wait 2 weeks for the new appointment, but it felt like I was going to be waiting for ages.

I had my appointment last night, and yes, I am going to be referred for ADHD diagnosis. When I was talking to the nurse, I said (without thinking) that I wanted a diagnosis so that I could be kinder to myself, and that’s the main reason why I am now on the waiting list. I need to be kinder to myself. I have an amazing brain that does amazing things and is excellent at spinning plates, but I don’t see the mess on the floor, and I have just remembered as I type that there’s a washing machine full of washing that was supposed to go on the line this morning before I left the house. Oops. I am also brilliant at choosing and writing cards, but then finding them weeks later unposted. I start craft projects all the time and if I don’t finish them before I get bored, I just leave them and start something new.

But it’s ok. It’s how I’m wired. And now I have finally taken my own advice, I have made that call, and I am on the waiting list.

Now it’s my turn.