I was diagnosed with ADHD in 2017 and with Autism in July (June?) 2021. Both diagnoses were an odd experience and both of them happened when I was an adult. My ADHD when I was 27 and Autism when I was 31. So I’m going to talk a little about the actual diagnosis processes I went through as well as what made us think we should look into getting these diagnoses.
I didn’t do it alone
Now, first of all you might have noticed I said “we” not “I” and that’s because I actually only went through this process thanks to my partner, Ben. So first of all let’s talk briefly about why that is. Ben is good at listening to people and good at reading them, he’s also very patient, this is in sharp contrast to my family who are dismissive, selfish, closed minded and abusive (in a variety of combinations depending on the family members). Now because my family are rubbish they never cared to look into my ‘odd’, ‘annoying’ or ‘strange’ behaviour but instead just wanted to shut it down as quickly as possible. I’m not going to go into how in this segment but I need you to know that’s what they’re like so you can understand how I got into my late twenties without a diagnosis, help or even anyone having any suspicions about this other than my partner. Now I met Ben in my early twenties and he apparently almost instantly thought I was (or probably was) on the autistic spectrum because of my behaviour, namely the intensity with which I tried to understand certain topics we would talk about, the questions I asked, and how I asked them.
What made us look at ADHD
What made us look at ADHD was actually a video I stumbled on, a Buzfeed videoof all things (link). It made me laugh in that “Oh I kinda feel that” /“That’s weirdly familiar” sort of way and then I showed it to Ben and he instantly said “That’s you. That’s how you are.” I was a bit surprised by that. Sure I’d felt a few things were similar but I’d not expected that strong a reaction. However when he started to explain how my behaviour looked like from the outside I could see what he meant. Then we began doing some research and more and more it looked like ADHD was a potential explanation. One good source of information was How to ADHD (link), a Youtube channel that I found very useful as a research tool and also as a toolbox to try and mitigate some of the difficulties I was experiencing. We started trying out some of the tips and tricks mentioned in the videos and found them helpful. As a result we decided it might be worth pursuing a diagnosis.
Getting Diagnosed (ADHD)
So after a few months sitting on this we decided it was worth trying for an ADHD diagnosis. We talked to the doctors and got a referral to a telephone triage system. This took several more months of waiting but finally the call came through. It was a very long call, about two hours. The man on the phone asked me lots and lots of questions. I was pacing and fidgeting through the whole thing, volunteering information and jumping from point to point without realising it but in a way that my assessor later told me was pretty indicative of ADHD. In the end the man on the call said at the end that he was almost sure I had ADHD so he was going to refer me along. What surprised me was that he also said he’d been screening me for Autism at the same time but I was a point or so off on that. His example was that I’m able to get dressed in the morning which, looking back on it, is a very flawed diagnostic criteria in my opinion. However he was just following his checklist. One thing he did say to me about Autism at the time that I found weird was that he didn’t want to refer me unless he was absolutely sure I had Autism as he didn’t want to risk me being discriminated against or it having an impact on my chances at getting a job. Now bear in mind this is a healthcare professional in a country where it’s legally forbidden to discriminate on the basis of something like Autism and yet he’s there worried that exactly that might happen. So that was a weird experience. However I didn’t think much about it, we were here for ADHD so I left it at that, despite having a point or so off the Autism checklist.
Almost a year later, right as we were moving to Scotland, we got a call. Could I come in to have an assessment? Of course. After waiting for a year we’d started to think it wouldn’t happen. But we made it, it was actually quite an adventure to get to the clinic but that’s another story. The interview was about an hour long. They asked us lots of questions and my fidgeting went into overdrive (it tends to when I’m anxious). At the end we had an ADHD diagnosis and I was told that when my medical files had finished being transferred up to Scotland I’d be contacted about being put on some medication.
Sure enough not long after we moved here I was set up with the ADHD clinic and put on Medikinet. I wasn’t sure what to expect and having to have blood tests and blood pressure tests before did make me nervous but wow it made a difference!
To explain what I felt you need to know that my concentration exists in two phases: first thing in the morning and last thing at night. Unless I hyper-focus and then it can go on for hours, filling up a whole day. However (outside of hyperfixation mode) the noise in my head is like a constantly changing radio. My thoughts dance about, random songs come in and remix themselves and normally by 2.30 I know that if I haven’t hit hyper-focus nothing is getting done until at least 6. On my meds things were a lot ‘quieter’ in my head and my concentration was better. It’s not that it stopped jumping completely or that I didn’t still start to lose focus after 2.30 but that on the whole my quality of concentration was better. I could pick up on things I’d missed in films or books, I could get more done while my meds lasted because I was less likely to end up distracted by something else (less likely, I stress this because it’s not an infallible ‘fix’ for my brain, it just helps with some of the ‘noisiness’; however there’s still a lot of stuff I struggle with). All in all it felt good. I’ve been on Medikinet for four years now and it’s a part of my daily life. I still trouble with regulating my attention, with prioritising and getting organised, with staying on task etc. but it’s more pleasant to be in my head, the jumble doesn’t drive me crazy and I can think more clearly.
>What made us look at Autism
However there was a lot of my behaviour that simply wasn’t explained by my ADHD. My aversion to certain lights for example. The way I perceive textures, or pain. The way I can’t read expressions well or go through ‘scripts’ whenever we have guests. I don’t like surprises and social situations make me anxious. What we thought were panic attacks just didn’t fit in that definition and seemed to be triggered by things that shouldn’t ‘panic’ a person (turns out they were actually autistic meltdowns). There ended up being a long list of these behaviours or experiences that simply weren’t ‘just’ ADHD. And then Ben turned round and admitted he thought I was Autistic (or ‘at least’ Asperger’s, yes we didn’t know the language back then and we were taught it was a scale).
>Getting diagnosed (Autism)
Again it was talking to the doctors and they sent us via the ADHD clinic who eventually refereed me to the Autism place. We then had to wait a while and finally we were sent a series of paper forms to fill in. Now here comes the fun part for me! It’s heavily, heavily reliant on family members chipping in. they want your childhood and don’t trust your own recollections. Partially I understand this but I also resent it when you don’t have any family to answer for me (although it was all on one sheet so they wouldn’t really have known either way but I put this in because it comes back later). So we fill it in (even managing to contact an aunt to get a little information) and send it off. Then came some more waiting and finally a video meeting was organised (because Covid restrictions were in place).
The interview itself was just over two hours long with a short break in the middle. They asked me lots of questions. Lots of it involved my childhood. A lot of my experienced difficulties were shelved during the conversation because things like being overwhelmed by light or sound apparently don’t feature in the diagnostic criteria here in the UK. Overall though it went smoothly enough but it was exhausting and nerve-wracking. I think the bit that annoyed me was that because I was doing this with Ben, not a family member, it could have counted against me. They want parents to tell them this. Even when you’re in your thirties apparently! However I was told that they decided not to withhold a diagnosis regardless of this as they understand I don’t have family I am in contact with. On the one hand good! On the other I felt a bit like saying “oh how gracious, how generous!” and being a little sarcastic because honestly am I the first person without a family that’s gone through this? Would they have withheld it if my own descriptions or Ben’s had been a micron less precise just because it’s not mummy and daddy doing it? And do they honestly think every parent knows their kid best? Because they don’t? I have no idea. At the same time I do understand they’re only following their procedure, however strange it might look like to me. Thankfully my interviewers were good, helpful and sensible people and they gave me my diagnosis. It was however, it the least autism friendly way possible. The doctor meandered around, talking about issues I had, traits they’d seen as being consistent with autism etc., etc., but never saying one way or another. Looking back maybe he was scared of ‘breaking the news’ to me. But I’m there thinking “Look I just want to know either way. Tell me. Tell me straight. Because either it’s autism and then I know. Or its not and we need to figure out what’s wrong with me.” In the end I just asked for a blunt answer and was told I had autism, more specifically (because of the book they use in the UK), I’ve got Asperger’s (which is a whole other topic I’m not touching here but I’m happy to just say Autism).
>Post Autism diagnosis
So that was that. It sank in. We weren’t surprised. I was sort of relieved. I mean it helps explain so much and it meant I could look into coping strategies and understanding how my brain works. I’m kind of glad, even though it leaves a lot to unpack, a lot of emotions and situations where you just wish you’d been understood sooner… that sort of thing…
I’ve been given a number, apparently I can call if I need help. Thought what sort of help or what reasons to call I don’t know. And I only found out this because of something else that happened during a ‘therapy’ course.
Other than that I’m on my own, trying to understand, (re-) learn and also just carry on with my life.
I also haven’t actually told my family, as mentioned we’re far from close. Ben’s family know (close family at least) and a few friends. So far no one has been negative about it. I even had a person who worked at our gym be very helpful when I explained I was autistic and he could see the music was disturbing me so he turned it down a bit.
>Was it worth it?
In short: yes. Both diagnosis were worth it for me because I like understanding how things work and the why behind actions, including my own. Why do I seem to experience the world differently? Because I’m actually, genuinely, experiencing the world differently to you, at a different intensity. Why do I struggle to understand expressions, tones of voice or if something is a joke, especially in crowded situations? Because that part of my brain is wired differently, or has developed differently. It’s good to have answers, although I’m still learning.
Part of the reason I think getting a diagnosis, even as an adult, is worth it is that it helps with understanding yourself and, in some ways, with your own self-esteem. It can in some ways hit you hard, they’re registered as “disabilities” and “neurodevelopmental disorders” after all but in other ways it can be a relief. It helps you realise that, for example:
You weren’t just a hyper or badly behaved child when you bounced your leg up and down.
In education or work, when you’re struggling to process, or understand something, you’re not just “a bit stupid”, even if everyone else is getting it.
Maybe you can be a bit kinder to yourself and learn to work with your brain (as you grow to understand how it works and what works best for it) not just force yourself to work harder and harder to try and cram it all in.
These are just a few examples but, with this new mindset, I think it’s possible to learn to stop kicking yourself for things you thought of as “faults of character” or “failings” in yourself, and instead learn to work with yourself and maybe even like yourself more.
>How do I think this will affect my future?
It makes me understand that working for myself might just be a necessity. It means I know there’s something I can, and probably will, disclose in some situations where it could help (e.g. at the gym or maybe if I joined some clubs). It’s helping me adapt my surroundings to be more comfortable to me physically and mentally
So there we are, that’s a bit of the story of getting both my ADHD and my Autism diagnosis. I hope you found this interesting and maybe even helpful. I’m going to put some resources I find or have found useful below (none of these are sponsored and are just my opinions), so hopefully this might help you too.
Now, I’m off to write more stories and learn more interesting things. Bye for now!
Robin (Lifelong Scribe)
P.s. If you want to follow me on my other social media you can find me here or on:
First a quick note on what I think is a common frustration for those of us with ADHD. A lot of information is aimed at adults looking after kids, as if children are the only ones with ADHD; some even going as far as to make a difference between the two, calling it ‘Adult ADHD’ as if it were different or less prevalent. I personally find this frustrating as there are plenty of adults with ADHD who either don’t get diagnosed, ‘because its a kids thing’, or struggle to find help in their adult life because the frameworks aren’t there for them and the information lacking on how to deal with it yourself (rather than care for someone with it). I later found a similar thing with autism, specifically a lot is aimed at mothers and there are far too many negative posts about autism, having autism and terrible advice on ‘curing it’. I hope resources on the whole get a lot better for both ADHD and Autism soon. With that slight negativity aside I now want to talk about the useful resource I found…
How to ADHD is a very useful Youtube channel and anyone with ADHD (referred to as ‘brains’) or anyone living with them or looking after them (referred to as ‘hearts’) should check out! It’s a positive channel which teaches about ADHD and about how to live with it covering everything from How to Prioritize when you have ADHD to ADHD and Emotions amongst many fine videos, including the Try Different song which is charming and uplifting. Everything from the content to the editing is perfect for ADHD brains and I’ve found this to be one of the most insightful and helpful sources out there. I always look forward to their updates and would highly recommend it to everyone!
Many people with autism and ADHD struggle sleeping. I found the AppRelax Melodies to be quite helpful. There’s a free and a paid version which comes with a mixture of sounds and melodies which you can mix together (adjusting the volume of each individually) into your own relaxing tunes which you can save and set to play (with a timer) to drift to sleep too. I found this very useful and it’s helped me sleep better than ever before. It might work for you too.
Talking to your doctor about (in my case, ADHD) medication (if that’s what you want to do).
Calmer Audio Earplugs they’re really good for helping to reduce the noise around me (they don’t block it out completely). This is especially useful in shops and in town where I often get overwhelmed. (I might do a full review of them soon)