More ADHD and Autism thoughts
Given everyone else is getting to add their 2 cents this week....
While this isn’t going to become a blog just about ADHD and autism, a few weeks from the diagnosis and with both being in the news, this seemed a good time to catch up on here.
I’ve also had many people ask about where I went for diagnosis and thoughts/links etc. I’ll put a little section at the end for those interested.
I was going to acknowledge/dive into the accusation on my last blog that I was ‘appropriating disability’ instead, I will simply reiterate that formal diagnosis is a privilege. And leave it at that.
Regarding where I’m at, I’ve had about two months to sit with my ADHD diagnosis and about two weeks with the Autism one. That said, nobody gets as far as the diagnosis stage without sitting with it for a long time. So it’s worth talking about that. How did I get here? Why did I get here?
In terms of ADHD, it was simply trying to find a practical solution. I was diagnosed with dyslexia at around 21 in my final year of Uni. After really struggling through Uni, getting marked down on poor spelling and grammar, a kindly lecturer suggested I get assessed. And honestly, it’s thanks to him I got a 2:1. For a long time, that made sense; my spelling and grammar were always shit, and my maths worse. Dyslexia fit. However, as time went on, I discovered more things I couldn’t do. Or that I struggled with that ‘everyone else’ found ‘easy’. In the workplace, whether this was learning Excel (my nemesis) in real life following directions (yes, even via Google Maps) to putting together furniture, or following a recipe. Lots of little things, but death by a thousand cuts. And as time went on, I was aware that not only didn’t the ‘fixes’ for dyslexia work as workarounds, but also a lot of the criteria didn’t apply. Now, this is not to say I’m not also dyslexic. Many things suggest co-morbidity with ADHD. But so so many of the things that I was supposed to struggle with (words moving on a page, poor comprehension skills, reading ability) didn’t fit, and neither did the workarounds for dyslexic ‘problems’ (also annoyingly, I don’t seem to possess any of the positive traits of it). There are many reasons this could be true; my Autism is canceling some out (hyperlexia, for example, canceling out the reading effects) or the fact I err more towards dyscalculia than dyslexia, but that wasn’t interrogated. The main point is I went looking for answers about why nothing was working.
And in that quest, I found ADHD. Not something that crossed my radar growing up. It was, I’ll be honest, something in passing that I heard of in American TV, and that’s about it. But in doing some digging and reading some articles, I started to wonder. The more I dug, the more I found. One thing about me (as the kids say) is that I’m a researcher (hi, Autistic holder of a Ph.D. here), and I spent many hours of my life reading about ADHD, then researching the criteria for ADHD before even entertaining the thought I might have it.
There’s a lot of backlash about ADHD right now. I wrote a Twitter thread on it this week. And the question that comes up (or accusation) is you all wand ADHD. I guess, depending on how you frame it might actually be accurate: I want ADHD to be the answer because I’m sick of being the problem (Hi, I’m the problem. It’s me).
So I got diagnosed. Not overnight as the media seems to think. I didn’t turn up to my GP do one questionnaire and get a ‘yes’. I spent months researching and then went through a rigorous process with a trusted private service. Again the need to go private is a tangential issue. But it’s certainly not ‘paying for diagnosis’.
And let’s address the elephant in the room. Did I use TikTok as part of my research? Hell, yes I did. Do you want to know why? Because on TikTok, adult women are explaining their experience with ADHD and autism, uncensored and from real lived experience. And I’m so grateful to those women (and some men, but given the struggles in diagnosis for women it’s them I’m grateful to). The way I see it, this is no different from the conversation I had with a lecturer all those years ago when he said, ‘hey have you considered…’ I was just able to collect a multitude of conversations and anecdotes beforehand.
This is why I’m writing about this, talking about it on Twitter and elsewhere. (I also talked about Autism here) Because it’s a pay-it-forward situation, those women helped me, so I’m trying my best to help others. And my inbox, DMs even a cup of coffee are always open if we’re close to each other.
That has been a real delight; that already a few people in real life when I’ve seen them in these few short weeks since, have talked to me about it. Have shared experiences or their thoughts on trying to get diagnosed or being diagnosed with either ADHD or autism, and shared experiences. It’s been so validating. And reassuring. Also, proof that we neurodiverse types find each other.
The flip side of this, is, in all honesty, the side I’m struggling with. The people who haven’t really acknowledged it. And it makes me feel like ‘oh well we always knew you were weird this explains it,’ and you know I’d rather they came out and said that. But on the other side, if people are wary of speaking about it, take that I’m talking about it as a sign that it’s ok. I’d like to. Actually, it would help me because so much of this, particularly on the autism side, is really isolating.
In part, it’s because it is almost the opposite to the ADHD diagnosis in that it’s an explanation but no solution. It’s confirmation I’ve always been weird, that people view me as weird, that I’m different to others, annoying even. And there’s nothing I can do to help that. Moreover, trying to counter it in the form of masking has been detrimental to my mental health and overall well-being for many years. So the healthy thing to do is to unmask and live as my authentic self (Whatever that looks like) but in the process, I will almost certainly lose people from my life. And I’m scared, in all honesty, that it’s already happening. And while I don’t want people who don’t want the real me, it’s a pattern I’ve lived with my whole life, and that’s sad. Sad, actually. I’m painfully aware my autism has already been used directly and indirectly as a ‘this is why she’s a terrible human’ situation, which hurts. Equally, it opens the floodgates of thinking now everyone has a reason to think you’re awful and a reason to cut you off because of it.
The flip side is that I also don’t fit what autistic looks like to some people. Or, more accurately, the parts of me they’ve seen don’t. Even so, I know there are accusations of ‘not autistic enough’ (cough its a spectrum). But also, perhaps in existing as my authentic self, I can educate people on things that perhaps they don’t know. Equally, I’m aware I’m not the right kind of autistic in many situations. I’m not ‘autistic enough’ for some. Or I’m the ‘oh she’s autistic but not that autistic’ or that kind of autistic. And you know what, no, I’m not because there are all kinds of autistic people in the world. Because it’s a spectrum. And no, I don’t require as much support as some folks. And yes, I function fairly ok in the world. But that doesn’t mean it’s easy. Like my chronic illness, just because people see me functioning doesn’t mean I always am; I just am in that moment. You don’t see the fallout later.
That’s the other side I’m already learning; now I’m aware of it; what I struggle with, what can and can’t be ‘fixed’. With awareness and the process of unmasking, those things become more apparent, and I find myself crashing harder and longer after social interactions. I struggle more with certain situations that previously have been ok. Eventually, all this will even back out as I learn to accommodate, moderate my life and make it easier to live. But it’s also exhausting. I almost booked a holiday but realised the panic and anxiety around doing that meant it wasn’t worth it. Again I will learn new ways to work with this, and it might sound ridiculous that ‘well you could do it before you knew’, but the truth is I still struggled, and part of this process is understanding, leaning into the struggles, to cope better.
And right now, I’m feeling very burned out by it all. I was already in this state at the end of last year, and I began feeling perpetually exhausted, generally unable to ‘keep going’. And I can hear the accusations of ‘your life isn’t that hard’ and ‘your job isn’t that challenging/you don’t have kids’ (delete as appropriate), but that doesn’t mean I’m not…burnt out. That doesn’t mean that a combination of a pandemic and shifting of an entire life, coupled with chronic illness, coupled with an ADHD and Autism diagnosis, doesn’t make…for utter burnout. But those voices are right too, because we’re not allowed to be right? The women (in particular) who have always coped. We’re not allowed to…stop coping.
That’s why the narratives on ‘overdiagnosis’ and ‘faking it’ are dangerous too. Because they keep so many of us in a state of ‘not allowed to be’ or ‘not enough’. And ultimately, diagnosis or not, we all come crashing down. Diagnosis feels like a chance to soften the fall.
Who I used for diagnosis
ADHD 360
These came recommended by a friend who used them and had a good experience. And I too would recommend. They are fast (comparatively) take self-referral and have transparent and competitive pricing.
I personally went for just the diagnosis option, so can’t vouch first hand for their ongoing care, but anecdotally I’ve not heard anything bad about them and again it’s very transparent during the process what they will do and what the costs will be.
The diagnosis itself was partly written (which helps me) and then a zoom session (if you opt for the medication etc you’ll obviously have follow-ups). For me, it was thorough, not rushed and felt very secure/professional (they do ID checks on patients as well). I felt I had plenty of time to ask questions at the end and a way to ask follow ups if I needed them. While I’ve not taken up any of them, the company also organises regular workshops/talks/group sessions (some free some a small fee) which also seem good.
My only cons would be this is a bit ‘production line’ and while the diagnosis wasn’t rushed and I always felt there was someone at the end of a phone, I get the feeling they are a very very large company and there occasionally seems to be some administrative issues there. But personally didn’t encounter any. My other con would be obviously the cost if pursuing medication. The ‘packages’ for the first year are competitive, but in the fine print, even if under ‘shared’ care’ with the GP you will be having to pay them a yearly fee which is something to consider if you think you need medication.
Worth noting they’ve also launched an autism ‘branch’ as well which I would imagine are equally professional and good.
https://www.adhd-360.com/
The Adult Autism Practice.
https://www.adultautism.ie/
I unreservedly cannot recommend them enough. They are based in Ireland but are very clear that their clinicians and processes are recognised by all UK authorities too (and possibly elsewhere worth checking though). They allow self-diagnosis, and in the first instance, ask for details on a written form (they do offer alternatives if this isn’t accessible). You can also have an initial consultation call to see if the process is right for you. And I genuinely don’t think they would have allowed me to continue if they thought it wouldn’t benefit me- either to establish autism or something else.
The process, and the Doctor I had (you get to pick as well and
wait in line with their availability then) was impeccable. Both in terms of the administrative and diagnostic process being totally clear, but also the way I was treated like a fully human patient. They have a third session too after the diagnosis, which is an opportunity to reflect on the process, and also via their charity you get an additional hour with another practitioner (I spoke with another psychiatrist) to reflect on the diagnosis.
Critically, however, they use diagnostic criteria designed for adults. So there is no talking about how you play or asking you to tell a story. It’s about the lived experience (obviously, they bring childhood into it but it’s information gathering not as if you’re still a child). They are also well educated on the way Autism presents in women differently, and how at different ages may present differently- the doctor was also very open in terms of how what she was asking aligns with autism diagnosis and experience. Finally (I could go on but I won’t), she welcomed the research I did, rather than dismissing it, so would refer back and ask ‘did you come across this while you researched’ and that wasn’t treated as a negative, which was huge too. I also felt very reassured and supported with the diagnosis, and as if I can go back and ask follow up questions should I need to.
More ADHD and Autism thoughts
I’m glad these diagnoses are helping you figure things out. I’m sorry you’re getting pushback. And the exhaustion makes sense. Masking is real cognitive and emotional work, and not optional if it’s not safe to unmask. And all this research and the process of diagnosis involves real cognitive and emotional work. I hope you can get the rest and support you need.