My ADHD diagnosis

In my last update I mentioned I was waiting for my adhd assessment. Well, as the title of this post suggests, I got the diagnosis – and I’m so relieved that I did.

However, the assessment wasn’t easy, there were many tough and deeply personal questions asked, and though I was prepared to answer things about my childhood and school life, the ones that hit hard were actually nothing to do with those topics. I mean, I did cry when talking about my primary school teacher bullying me; for some reason, whenever I explain that to a doctor, the tears always appear. But I expected that, so after the influx of emotion passed, it was fine.

What got me was attempting to explain how, if I had ADHD and thus my concentration was so bad, did I manage to write books. Not only this, but the doctor (a psychiatrist specialising in neurological conditions) went on to ask how successful a writer I was, including how many books I’d sold. And considering I’ve had high imposter syndrome recently and have been questioning whether writing to be published is something I should even be pursuing still, it cut me deep.

Other questions that hurt were why I still had my birds when their sounds were distracting, why I don’t want kids, and how I knew I had something close to an eating disorder when I was younger (I didn’t have any diagnosis or records of one, but gosh did I have the mindset and sadly could slip back into it easily if I’m not careful). So, ouch, on all fronts, to the point where I completely broke down after the assessment was over.

But – as I’d also provided lots and lots of notes beforehand explaining my brain – I got my diagnosis then and there at the end of the session. Quickly, abruptly (as to my mind, things really hadn’t been going well. I’d been rambling and getting flustered, so it felt like my responses weren’t particularly coherent), and without much extra explanation. I was asked if I had any questions, but my brain was fried at that point, so any I had promptly left.

Fortunately, after emailing the head ADHD nurse, who I’d been in contact with during preliminary screening, I had a good conversation the next day with full permission to explain my feelings and rant as much as I needed to to get everything out. After that, she went through reasons why certain questions were asked, and went on to detail all next steps and options open to me.

Though I’ve been hesitant to try medication before, on the grounds that if I’m to have it, I want to make sure it’s the correct type for my neurodivergent brain and won’t simply cover up the symptoms of an underlying condition (untreated ADHD can often cause anxiety and depression, both of which I have), I chose to be put forward for ADHD medication. After a few tests at my GP surgery, which included blood pressure, pulse, height, weight, and an ECG, I received my first prescription of methylphenidate, which is a slow-release stimulant.

Now, medication isn’t for everyone, and there are lots of treatment options for the parts of ADHD that interfere with daily life. But, for me, I’m really pleased I made the choice I did. Within an hour of taking the first dose, a subtle, yet tangible change occurred to my thoughts. Usually, my brain runs off at top speed on anything and everything, flitting from topic to topic. But, though I still had the thoughts – meaning, I was still very much myself – I could choose to follow only the ones that were relevant to what I was doing at the time, and go back to the others later. When I explained this to my partner (who we also suspect is ADHD), he came up with a great metaphor: instead of everything being dumped in a box that I have to sift through to find something, I’d been given shelves where I could see everything individually and just select what I needed.

As of writing, I’m on day six of being medicated, which admittedly, isn’t very long, but it does appear that my ability to maintain focus on writing has definitely increased (the very fact that I’m writing this, after not posting an update for so long due to lack of energy and motivation, is good evidence of this). And the thing that’s most surprising is the realisation that the fatigue I felt from doing any kind of task was caused mostly by my chaotic thoughts, and now they have (slightly) more order, that fatigue is nowhere near as bad. I can feel it, but I’m not completely crashing anymore.

Sadly, my laptop battery is now fading, so I’ll have to wrap this up. Getting confirmation of my full neurodiversity (I’m autistic too, and yes, you can very much have both conditions), has allowed me to understand and accept how different, yet cool, my brain is. Even though I struggle with things on a daily basis because of it, I can see my creativity and ability to notice things few others do all stem from it and make my world brighter.

This process has taken, well, a lot of processing, but I’m getting there. And taking medication, despite all the controversy surrounding it, is no different to when I wear my ear defenders or sunglasses to help lesson sensory overload when I’m outside. It’s an aid to help me, and it’s not a bad thing. (I will point out, though, that I’m taking my medication exactly as prescribed by my doctor and I’ll be having strict, regular reviews with them to make sure it’s still doing what it should and nothing else.)

Lastly, for those interested or considering pursuing diagnosis, some key details. I’m in the UK and went through the NHS, so the process may differ considerably in other countries, but here’s the route I took:

In mid 2019, I spoke to a general GP at my local doctor’s surgery, explaining that I wanted to be referred to the ADHD service for diagnosis. I had a few notes with me on traits I resonated with so they could easily see my reasoning.

After that, I had a very long wait (possibly made worse by the pandemic), but eventually got sent some screening questionnaires to complete and send back. After that was done, a phone call was arranged with the ADHD nurse for an hour long further screening conversation, in which I had to answer a lot of personal questions about school, family, work, social life etc.

Determining that I was eligible for a diagnostic assessment, I was then given a virtual appointment and completed the assessment I’ve spoken in detail about above, and as mentioned, after diagnosis, I was offered options for treatment, which included various therapies and medication. I received very detailed leaflets on the option I chose, so I could thoroughly research before finalising my decision.

So, there we go. I hope this essay of a post has been interesting and/or helpful. Thank you for reading!

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Little ol’ stimtastic me

I want to search for myself in the grain,

stills can only tell so much

and I need more.

So back I roll past white noise

to the start of my fingers

tapping out the sheet music on invisible keys

while my eyes put up their barrier against the hum

and I go off into space.

There it is. The movement

I’m playing right now, recorded in the background

twenty-one years ago.

Processing my autism diagnosis – watching home videos

So, as I mentioned in previous posts, I was diagnosed as autistic in January this year. So far I feel I’ve done a pretty good job of processing it and letting myself recover from all the strains of masking throughout my teenage years and well into adulthood. (For those who don’t know, masking is a way for neurodiverse people to act so as to fit in with society, but it’s intensely draining and goes against all our natural instincts, causing anxiety, depression and other mental health issues. Think pretending to be a movie character for your whole life without ever getting chance to be yourself for fear that you won’t be accepted/judged/bullied etc – I’ve pretty much made a vow that I’ll only mask if it’s absolutely necessary to preserve my future mental health.)

However, one of the things I wanted to do was to watch old videos my family took of me as I was growing up to see if I could see any autistic traits, mainly because I’ve seen lots of vlogs by families with autistic kids and wondered if I acted the same as they did. I knew my nan said I flapped my hands and made other stimming/self soothing gestures when I was less than a year old and that she suspected I was autistic (sadly, not much was known about girls on the spectrum in the 90s, so I was dismissed by the doctor, a story I know is only too familiar for women my age who are only now being diagnosed), and I remember feeling on the outside of a lot of social stuff like birthday parties and playgroups.

After speaking with my awesome mother, she dug around and found some tapes of past Christmases, birthdays and holidays for me to watch. When I put the first one on, within minutes of watching myself and noting my body language, where my focus was, how I spoke and interacted with people around me, I knew that the signs I’m autistic have always been painfully obvious, the only problem back then was that no-one knew what they were looking for.

And it hurts that something so obvious was missed. But seeing myself so natural was also liberating, because I’ve spent all these months post-diagnosis trying to relax myself and not worry about being judged enough to drop my mask, especially regarding stimming – knowing that how I stim now is the same as back then makes me feel that I’ve found myself again. I didn’t lose myself in the masks I’ve had to wear.

I cried because of this, and rocked and flapped and did all the things that help me express my emotions.

Of course there will still be times when I don’t feel my difficulties are valid, because there’s always going to be people who don’t understand, don’t have patience and some who just don’t care, not to mention my own thoughts of feeling completely fine until I have to be social, but this has definitely helped me to realise that though I might have hidden things well as a teen and adult, I have always had these difficulties.

And if I need more time to think when I’m asked a ‘simple’ question, need help doing everyday tasks, or if I need my ear defenders just to walk down the street because the world is so loud, it’s perfectly okay.

(Side note: along with my difficulties, there are many cool things about being autistic, and I’d never want to change how my brain comes up with all the crazy ideas I have.)

Anyway, that’s my ramble for today. Time for dinner.

My autism diagnosis was like a (super late) letter from Hogwarts

It’s the explanation for all my quirks, from my vacant gaze

during conversations to my comfort-first wardrobe.

It’s my Hogwarts Express ticket: once I jumped through the barrier

I finally allowed myself to be me, no longer forcing myself to hide.

I released all the movements I held back for fear of being weird: flapping, rocking,

spinning around and holding my arms wide to catch the breeze on my skin.

 

It’s true, I can’t vanish glass, stun anyone or cast a bat-bogey hex.

But I can talk for hours about writing, old books and Sailor Moon.

 

Some days I can be silent, absorbed deep in my work

or lacking the energy to even move my mouth

and it always bothered me why no-one else seemed to do this.

 

Now I’ve realised there are others out there like me, who prefer

teaspoons to big spoons, see patterns everywhere

and wear sunglasses in supermarkets.

 

Harry got a visit from Hagrid.

I spoke to a psychologist.

The news they gave changed our lives forever.

 

A letter about autism to my childhood self

Hey. Try not to panic. It’s you from the future, and

I’m writing to say don’t worry. Everything

that’s getting to you at the moment will make sense in the end.

 

Like the times you wait by the fence watching the other kids play

wondering when they’ll ask you to join in, and what you’ll do if it happens.

How you’re confused at the ease they interact, talking freely,

while you stand their silently, their shouts and screams of joy

overloading your ears – until the whistle blows and hits you like ice up your spine,

locking you into rigid limbs and wriggling insides. The hold authority has.

And those times you’re unsure what Miss is asking of you, fretting about if you’re doing your work right

because she didn’t go through it fully first. So you wait

and watch the other kids, trying to guess their thinking as they set straight to it

and hoping you can catch a glimpse of their work so you can copy.

Then there’s the time you have to go to the dentist during rehearsals for the school play. Should you put your hand up? Should you just stand?

You ask around in whispers, and everyone says put your hand up. You do, but the teachers don’t see, so then you do stand.

And get told off for not telling them to put you on the end of the row, even though your form tutor read the note at registration.

How about all those times the kids take advantage of your attempts to join in? Sharing

your cat’s cradle only for them to run off with it and claim to the others that it’s theirs,

or when a girl steals your toy and tells the dinner lady you stole it from her

and you can’t speak up properly so give in and let them keep it?

When they’re supposed to share textbooks

and drag them away so you can’t see?

Let’s not forget how you can’t co-ordinate your body in P.E,

or have so much trouble learning in class that you take your work home.

When you have your nose in a book at the doctor’s because you can’t deal with what is going on, and get called rude for not paying attention.

Then there’s your many attempts to get the timing right on Mario’s jump and fail at every try.

When you tell a stranger about how bad mum’s morning breath is

and don’t understand why she’s embarrassed. It’s fact, isn’t it?

Why you can’t understand why people play with dolls when you can just make up characters in your head.

 

Like I said. It’s all fine. There’s a reason for it, a simple explanation:

Autism.

A condition meaning

your brain is wired slightly differently to most people. You notice

things they never will while missing the unspoken signs

they give each other all the time.

It doesn’t mean you’re strange, weird, stupid or a freak.

It means you’re you,

and though you haven’t met them yet, there are others out there

who are wired in the same way

and know just how this feels.

 

So remember, you’re not alone. If you explain

your difficulties (and your strengths)

then eventually the world will start to understand.

 

P.S. In the meantime, try sunglasses and earmuffs — all year round.

Traits (Or overlaps in mental health conditions)

The stairs lead in all directions to everywhere and everywhen,

yet back to the start if you take a wrong turn.

The scales teeter back and forth

unwilling to make a commitment either way.

 

Oh…I’m autistic

Greetings, everyone! Today is apparently the day for a long(ish) post about things on my mind.

In late January, I was formally diagnosed as autistic, and it’s taken me a while to fully process it. Though I knew I had many traits and spent last year writing things down while I was on the waiting list for assessment, it still came as a bit of a shock to me.

I think I still had that small nugget of doubt, and when that was finally snuffed out, it sent me into a bit of a self-analytical spiral. I also had a massive meltdown where I simply couldn’t stop screaming — it’s an odd thing to have your body doing one thing while your mind is observing everything from a 3rd person view. And I was highly impressed at the sheer range of my voice. Honestly, I think I could give a banshee a run for their money, or a Camaar fish wife (if anyone gets that reference, I’ll give them a cookie).

I think the meltdown was not only realisation, but sheer frustration that it’s taken 28 years for people to see it, and one of my main thoughts was what would my life have been like if I’d known earlier? Would I have been bullied at school so much? Would I have even attended the schools that I did? Would I have had better advice on relationships and more understanding of why I can’t handle certain situations? Would I have felt so pressured to get a ‘real’ job that I accepted the first offer I got and spent three years struggling and pretending to be perfectly fine when I felt like hiding away and covering my hands over my ears through every shift?

But what I realised was that it doesn’t matter, because you can’t change the past. All you can do is look to the future. And I’m now in the process of getting the support I need.

I’ve also been suffering with anxiety and depression due to various other personal situations, and the whole lot combined has left me completely drained. However, I can’t live life as a complete recluse, and as much as I find it extremely difficult to talk to people — whether I know them or not — and experience a lot of sensory overload whenever I go out, I still have to do ‘basic’ things like going to the doctors or buying food.

I also know that as my poetry collection and my latest book are now out, I should be trying to promote them as much as I can, which includes going to spoken word nights. Which are nice in theory, as I get to listen to a lot of other artists, but not always so great in practice due to the sheer social nature of them.

Last night was one of those occasions, and not only was I uncomfortable the whole time, but after it was over, I felt like a group of bulbasaur had leechseeded me. I could barely walk properly, and my mind had died completely. Don’t get me wrong, I did hear some great poetry and got good encouragement for my own, but I honestly have to ask myself if that level of exhaustion, and the week or so of anxiety leading up to it, was really worth it.

Thing is, I don’t have an answer. I doubt I ever will. All I know is that one side of me wants to get up and perform at every one, while the other wants to stay home and play scrabble with my partner (who is a significant rock in my life and does all he can to keep me grounded when I feel like everything is beyond my control).

One of the definitely positive things I took away from last night was that I wasn’t the only one struggling to do what I do, as one of the other performers was autistic too. There was also a spoken word artist with ADHD and one who is Dyslexic. So the sheer amount of creativity neurodivergent people are capable of despite their struggles is something truly inspiring.

Anyway, thank you for continuing to support this little blog and my creative efforts. This post has been quite therapeutic, not only as a way of recovering from yesterday and other stuff, but also because I’m enormously anxious about a phone call I’m expecting (I wish people would give specific times for these things). But I’m sure I have rambled on long enough, so…

Kate out!

Puzzle Pieces

I’m standing here on this bridge watching you

as I attempt to explain

how I’ve been searching myself for

the traces

of puzzle shapes, so I can pluck each one

out from the whole and analyse it.

My traits; behaviours over the years.

When I look at them individually, it starts to make sense.

 

The way I am me is quite different to the way you are you.

 

When we approached this bridge,

it made you smile when I leapt onto it, running.

 

Placing myself here is hard, but it is the right thing to do.

I know you see me clearly

whether my pieces show or not.

But it would be nice, just for once, if others did the same.