It’s been a year since my Autism diagnosis, and this felt like the time to reflect a little on specifically what the process of diagnosis has meant. It’s actually been a full year since I wrote on this at all so it seemed like the time to dive in.
I previously wrote on my diagnosis in two blogs, one on initial diagnosis here. And a few more thoughts here. There’s also some information on my routes to diagnosis and why.
As ever, this is just my experience; I don’t speak for other autistic people, and I don’t pretend to be an expert. I’m learning as I go and am happy to take (genuine) corrections to my language, assumptions and more. However, this is also my experience of Autism, and again, I hope that folks can respect that and the spirit in which it’s expressed.
Why diagnosis and what it did
Firstly, why get a diagnosis? What difference could it have made? Why do it now?
First and foremost for me, it was about being able to enter into a conversation of ‘if not this what?’ because clearly, something was not ‘right’ with me…whichever way you spin it- and I’m all for finding the positives too- much was ‘not right’. I’d struggled with mental health for all of my adult life, but none of the ‘fixes’ worked. I’d struggled in work and education, and again, none of the ‘fixes’ work, whether it was therapy or approaches to studying, had never worked.
A really good comparison is to my chronic illness- when I got diagnosed with Ulcerative Colitis, I wasn’t ‘hoping’ to have that disease. Still, I was hoping for an answer to a multitude of symptoms that had made my life a misery. And in getting that diagnosis, I both have treatment options and an understanding of what my body is doing. Similarly, with Autism, I wasn’t ‘looking’ or ‘wanting’ Autism, just hoping someone could tell me what the hell my brain was doing….if it had been something else, just as useful to know. And once you know, you can find ways, if not to ‘treat’ it, to work with what your body is doing. And with both chronic illness and neurodiversity, there’s a fair amount of adjusting your expectations of what your life looks like, which are both freeing and quite scary.
Do I wish I’d done it earlier?
Short answer: no. I have always said, even about my dyslexia diagnosis, I don’t wish I’d had it in primary school because I grew up in the 80s and 90s, and any ‘difference’ put you in a box you never got out of. I don’t think if I’d been diagnosed with Autism in school, I’d have achieved all that I have. The education system I grew up in didn’t believe that autistic people could achieve anything or that they had to live a separate sort of life. And while support would have been nice at times, particularly by the time I got to university, I think I grew up at a time when knowing would have held me back more than I already had. Maybe I’m wrong; we’ll never know.
Long answer: I want the last 20 years back.
I do wish I’d known once I got to work. I wish I’d known maybe 20 years ago because these have been the hardest years. Socially, educationally, work-wise. I wouldn’t feel so bad that I’d failed in life if I had understood myself earlier. I wouldn’t have so much pain and trauma from all the failed friendships and adult bullying if only I’d known earlier. I wouldn’t have spent so much of the last 20 years sad, in pain and wishing I wasn’t here if only I’d known. I’m deeply sad that I can never fix what I’ve lost there. But I can at least move forward from it.
Has it helped?
Yes. And no. Again, I can’t undo what I’ve lost or what people think of me. But I can start trying to change things for the future.
The biggest change for me is the ‘oh that’s why’ of everything. It’s a slow process of understanding so much of my past, how my brain works and how I function in the world. A year on, there’s still so much to learn. But again its’s a process, and it’s helping.
It’s also about understanding how I want to exist in the world. Slowly, piece by piece, I’m stopping trying to fit into neurotypical moulds, ways of working and being and instead, trying to embrace who I really am. Of course, in part, I have no idea who that is or how to do that. But again, it’s a process.
So, you get all the support now?
Hahaha no. I love the weird perception that an autism diagnosis magics up some support that fixes it all. But alas. However, it means when I move forward to new jobs, I can ask for accommodations, using an understanding of my brain, my needs and more.
Well you have a community now, with the other Autistic people right?
As the months have passed, this has felt one of the hardest things. When I was researching Autism, I suddenly felt ‘seen’ by so many articles, people, that sort of thing. However, as time passed, my experience felt quite distant from others.
A lot of the loudest voices are younger people. As much as 20-something people who are ‘late diagnosied’ are indeed ‘late diagnosed’ that’s still not the same as a 40 year old being diagnosed. I equate that often to my experience of queerness and younger people’s- we did not grow up in the same spaces, have the same adult experiences, and while we share some things, others will always be different. So I feel lacking in my peer group. I feel lacking in people whose lives feel like the one I’ve lived, and that’s a lonely experience. I also feel like the loudest ‘influencer’ type voices aren’t advocating for ‘old people’ like me, and we don’t count.
Unfortunately, I have been in a work environment where I ‘dont’ count’ enough. Something once I leave I will speak on more extensively, but Autism has been repeatedly labelled ‘not real’ or ‘not serious like these people’ and I’ve had some pretty negative, isolating experiences. Again it feels much like ‘coming out’ and dealing with the backlash.
‘Well now you know you can fix it right?’
The idea that, as a late diagnosed autistic woman actually, I should carry on the same as normal. There’s a weird idea that now that you know, you should be somehow…less autistic because, well, you can fix it now, right? Now you know what’s ‘wrong’, can you stop doing it?
The answer is of course…no. Because it was already hard, and the point of diagnosis should be to be able to work with your autistic brain, not against it. But the general wisdom I’ve discovered is the opposite, that you should work harder to cover it up.
‘They didn’t like me because I was Autistic.’
‘They didn’t like me because I was Autistic.’
One of the most jarring, freeing and depressing all-at-once realisations was ‘they didn’t like me because I’m autistic’. So all those women (it was always women for me) in offices and in the choir, they didn’t like me because I’m autistic. Oh, ok then, so it wasn’t my fault. It wasn’t something I could control, even though I knew I was doing it. That’s good, right?
Oh wait, they didn’t like me because I’m autistic. I can’t change this thing about myself. This thing will always be there, and I’ve been actively damagining myself by masking all this time. So if I stop, I’ll be ‘more’ autistic, so they’ll hate me more….great.
I think it’s one thing to spend your whole life thinking you’re just unlikeable as a human, that there’s something wrong and broken with you. It’s another to get it confirmed and know you can’t fix it. I can never be the person that people like that will even tolerate, let alone like. And I think had I been told this earlier in life, in many ways, it would have truly broken me. By now, instead, I’m already able to make peace with the fact that many people in life won’t like you (Autistic or not). And in that, somehow, it’s easier to accept that there is this innate thing in you that certain people will automatically hate, but while that’s not ‘ok’, the not ok is on them, not you.
This is one element where I’m glad I was older when I got diagnosed. While it doesn’t undo the years of bullying and trauma, I’m not sure either; I would have coped well with the idea people just wouldn’t like me forever for something I couldn’t change when I was younger. Now at least at almost 40, I already have a ‘fuck it’ attitude to whether people like me or not that comes with age. And while I can’t deny it stings still that people won’t like you because of something you can’t change…I also can’t change the fundamental parts of me.
The positives?
This has been largely full of the struggles of discovering I’m autistic, and I think that’s ok. I think it’s okay to discuss that it’s not a fix. Discovering you are autistic doesn’t erase all the struggles. Discovering you’re autistic doesn’t fix the world around you; it’s a process. You have to go through this part to get to the other side. It’s ridiculous to think that after almost 40 years of thinking one way about yourself, you could just immediately be ‘fine’.
I want to…be here now
This is a hard one to talk about, but the amount of times in the years leading up to my autism diagnosis I would say, ‘I wish I were dead’ is now, when I look back, worrying. Any amount of times to say that is worrying. But the amount of times I have sat on the kitchen floor sobbing and wishing I wasn’t here was….starkly worrying. Obviously, it’s more nuanced than that, and many factors come into the shift. But knowing that there’s a reason I feel so broken helps a bit. Because while on that kitchen floor, I’d also cry about being so broken and unable to fix it. To have lived so long like that, feeling so broken, and like I didn’t want to be here any more…I realised a few months ago I hadn’t said that in a while. And while I can’t say I’ll never feel that way again, the relief that that is something that changed is something.
Because it feels like I can move forward now…I can figure some shit out somehow. It won’t ever be perfect, the world will always be somewhat difficult for me, but I can figure out a way through now.
Working with what you’ve got
In that spirit, I’ve spent a lot of time figuring out how to work with what I’ve got now. Again, there’s a long way to go, but it’s better than asking ‘why can’t I?’ or ‘what’s wrong with me?’ constantly. Knowing what’s wrong with me (and again not that being Autistic is ‘wrong’ but knowing what’s different, what we’re working with here) helps. Because you can then work around, work with, or just do something else.
Unmasking
This is both a freeing and difficult element of autism diagnosis. And not to mention it can also be dangerous- particularly for women and other minority groups.
I often think of the cliche autistic white males who are allowed to be unmasked as default - they can be blunt, talk about special interests, stim even, and they have far fewer consequences. People also accept them more readily because they fit into a box. For women and other minority groups whose unmasked self is less easy to ‘categorise’ it's harder and often dangerous.
So, have I unmasked at all? Publicly, probably not. Aside from the odd moment when I’m so tired and run down, the mask slips.
With friends? Maybe? Partly it is the above and feeling more comfortable with some friends. I wouldn’t say I’m ever completely unmasked with any, but they certainly get a mask closer to the real me.
I think my greatest fear is going back to an office full time because I don’t think I could mask all day, every day, like I used to without breaking very quickly. That’s really what gives me anxiety right now. I wish neurotypicals knew too, what masking takes out of us just to exist in the world.
That said, I’m more comfortable unmasking in my own house or in other comfortable spaces. I feel more now, and I embrace my echolalia (I can have partial conversations in Pingu noot-noot noises, which is quite funny). I also am better at expressing autistic joy in things, which, admittedly, I only really do around my mum, but it’s something. Another place I think I unmask is at hockey (again, there’s another post in that). It was an example that came up in my assessment- there, I can express my autistic joy. Still, I can disassociate and unmask, in general, it's one of the few places I feel able to just…exist (also shout out the number of neurospicy folks at the hockey, which helps!).
Gendered Questions
One of the things that I continue to reflect on, too, is the gendered questions around autism. Both feel like I fall into the ‘late diagnosed autistic woman’ category and not. More than that too, though, I find myself wondering if my lack of female friends all my life, my lack of fitting traditional female roles is related to this and not.
In part, I feel not because we are not just Autism- we are complex, nuanced humans. And plenty of autistic women fit much more stereotypical gendered roles (obviously that these roles exist is a whole other thing to unpick). But also we’re told repeatedly that not being a ‘girls girl’ is wrong, that being a girl who has mostly male friends makes you a ‘pick me’ girl or a ‘not like other girls girl’...when maybe for the neurodiverse of us, it’s just a blend of interests, neurotype and like-mindedness that makes us gravitate towards a different gender. Perhaps too it’s just that gender is a construct, and it’s just different brains' attitudes, whatever.
In some ways, an Autism diagnosis complicated my already complicated relationship with gender, and in other ways, it freed me from it if my brain is already wired in a certain way that goes against a dominant way of thinking, then why not lump gender into this? If I already behave in ways that aren’t ‘normal’, then why not lump gender into that? And with so much else to worry about, why bother worrying about whether I behave as a ‘woman’ should or think like a woman ‘should.’
Sexuality and Autism
This is one I struggle with a lot. Having ‘discovered’ my asexuality about 2 years before being diagnosed with Autism, I felt like I finally found an important part of my identity. I finally had been on a path of finding out really what my sexuality was (and, with it, gender identity). But now I feel like people invalidate that identity through my Autism. It’s really easy to say, ‘oh you’re not asexual, that’s not real, you just don’t understand sex and relationships because you’re autistic’ or that ‘Well you’re only asexual because you’re autistic.’
While there are links between the two, I feel really strongly that my Asexual identity is its own important part of my identity and separate from my autism. Many autistic people are allosexual; many asexual people are allistic/neurotypical.
For me, sexuality is a hugely important part of my identity, and having it conflated with my Autism is a real struggle. It’s also, of course, another struggle; she’s asexual, she’s queer, oh, she’s autistic too. Who wants to date that? And it’s hard; it is that feeling of all these things that means you’re alone. Having also been mocked for being single forever, again, the conflating of ‘oh that’s why’ is really hurtful and hard…and lonely too. I love my asexual identity, and I won’t apologise for it, but it doesn’t mean the whole mix isn’t hard to live with.
Always needing support
The thing people don’t see, with high- masking low support needs people like myself, is the amount of support we still actually need. Low support isn’t any support after all, and even if you have no support in place, that doesn’t eliminate the need for the support it just makes… you struggle more. With no support, everything feels like an ‘either-or’ situation; I can function well enough at my job not to get fired OR maintain friendships and social life. I can work the long hours I’m expected to, like a neurotypical person OR I can maintain a house. It’s not that all the things aren’t possible, but they aren’t possible to neurotypical expectations with no support.
But when people look at people like me, they don’t consider me someone who perhaps can’t move out of her mum’s house. I know people judge me for living with my mum at my age. And it feels like this horrible secret- the idea that it’s not just ‘can’t afford to’ (though that is true). It’s also about support needs, something that people look at someone like me and think can’t be true. It’s also one of the scary things about the future; as an only child with no extended family and no partner, what does the future look like? But since my diagnosis, it’s also something I can’t live in as much denial about either.
Meltdowns
This needs its own post, too, and it’s something I struggle to talk about. It's one of the most difficult, embarrassing, judged and misunderstood elements of autism. Autistic meltdowns are not, in my experience even what other neurodiverse people mean when they say ‘meltdown’ (broadly speaking). When friends talk of ‘meltdowns’ they talk of being overwhelmed, maybe snapping or crying, arguing, being overstimulated, sure. All those things factor into an autistic meltdown, but an autistic meltdown is so much more.
Firstly, it's fully uncontrollable. I can sometimes ward it off enough to be somewhere more quiet and private. But their nature is that they are the breaking point, and most often, it sneaks up on you. And they aren’t just crying a bit or being irritated. We’re talking…often outright violence against myself, inanimate objects or others. I’ve hurt myself and others, often my mum, more than I can count. A meltdown can mean damaging furniture, lashing out, and, more often also, hurting myself.
In the year leading up to my diagnosis, my meltdowns were almost out of control. The stresses, all the reasons that led up to me seeking a diagnosis, all meant more meltdowns. It was one of the hardest times- and I still bear the quite literal scars.
Since diagnosis, one positive is there have been fewer meltdowns- partly through being able to understand and regulate myself better. But also, at least, I now understand what they are. I’m still not there to figure out triggers or manage them when they happen, but knowing they’re not me being a terrible person, not me trying to do anything bad… helps. But as with always needing support, knowing it’s something I’ll always deal with is hard.
Giving myself permission
It has been a huge revelation, whether that’s permission not to do something or to be the way I am. I am realising I have limits that are different from neurotypical limits. I realise I need to adapt and do things differently. It’s not easy, disappointing and difficult at times to accept that you are different from the world’s expectation or perception of you, but it’s also a step to better functioning in the world.
This also extends to things like special interests and leaning into how my brain works. I’m unapologetic about my interests, my loves, even the ‘childish’ ones. Again I don’t think I’d have coped with this so well if I was younger. But the pressure to be less ‘normal’ or at least the fucks given about it as you grow older helps with accepting this.
Neurospicy friends
The huge positive is that I now gravitate to and embrace the coven of neurospicy friends I’d already amassed. I’m not fighting for the neurotypicals to like me any more; what’s the point? They’re exhausting and, as proven, don’t like me anyway. I make exceptions for a few of them, but on the whole, I might as well hang out with ‘my people’.
It’s quite funny the number of people who have since my diagnosis said to me, ‘oh I think you’re quite normal actually…is that because I’m not neurotypical too?’ and I love that. Firstly, because it probably means I’ve been to a degree, an unmasked version of me around them. But also because it just means they’re likely to stick around. It’s such a relief when someone reveals themselves to be a bit neurospicy because then I hope they’ll be a friend, someone who won’t run away. I feel I’ve got better friends than ever, and I do credit knowing who I am and finding like-minded (erm, literally) people to go along with that.
So what now?
Honestly, my biggest pressing concern and outright fear now is finding work because my current job ends in May. And there is an all-consuming fear that I’ll be back in one of the kinds of jobs I can’t cope with struggling and back where I started. I know in theory, I have the tools to deal with it a bit more now….but that’s my reality. The feelings of failure are very real and all consuming but again, I’m trying to move through it with this new knowledge A good indicator too, that the diagnosis is truly just the start.
On that note too, this blog marks the start of being able to talk more about my experience with autism (and later bringing my ADHD and dyslexia into it as well, but there’s only so much room in a blog). I’d like to talk about a lot of things- from friendships to special interests to sexuality. So going forward, that’s what we’ll do.
I am in my mid 60s. No formal diagnosis but as I look back over all the difficulties and behavioural traits that have been with me as long as I can remember, an ADHD and autism dx fits. I have gained so much by reading blogs such as yours. I can really get what you have said in this update. To know that one hasn't just been "difficult" by choice, since childhood, makes me feel able to embrace my characteristics a little more comfortably. To know its not "Always my fault" Thank you. 🤗🧠 #Neurospicy
A friend visited me yesterday, she too is a c.40 year old woman recently diagnosed Autistic. Lots of recognition to what you're saying here and elsewhere as, quelle surprise, LOTS of neurospicy friends in my life. Much love + allyship and thank you for sharing.