how i feel about my autism diagnosis
It’s almost a year and a half since i was diagnosed with Autism Spectrum Disorder, so i wanted my first ‘blog’ to be about that: how i knew, the process, and what it’s meant for me in terms of understanding myself.
Realising i was autistic came in pieces over a number of years. It kind of started as a joke and then became less and less a joke over time. But it wasn’t something i thought about seriously until the last couple of years, mainly because my understanding of autism was like most people’s: based on tropes and the depiction of high support needs autistic people in film and tv. Very early in 2024 someone sent me an online self assessments because they were doing it, so i thought, why not do some just for a laugh. And then test after test i was scoring above the median average score for people who are on the autism spectrum.
I know, I know. Everyone and their dog is autistic nowadays, or at least believe they are. With everyone addicted to their phones, there are very visible trends people jump on for a bit of social coin, and it really does seem like neurodivergence is the latest one. On the one hand i’m skeptical of the whole ‘movement’ in general, on the other hand i know my own experience and how the diagnosis has led me to understand myself and my life in a way i didn’t think i would ever get to be able to. It really just made everything click into place.
The process to get clinically tested involved multiple sessions over a 6 or 7 week period - primarily interviews and questionnaires. In contrast, my previous diagnosis of Bipolar Disorder when i was about 26 came after a single one hour session with a psychiatrist i had never met before, and resulted in a miserable 3 and a half years on lithium. The lithium alleviated my depression initially, whilst totally shutting down parts of my brain (i stopped drawing and listening to music the whole time i was on those meds). But while i’ve always had some self worth issues, i was really depressed because my mum had died the year before, and i spent most of the time i was on lithium, particularly the latter couple of years, suicidal - it made everything so much worse. I’ve learnt it’s incredibly common for autistic women to be misdiagnosed with something else before they reach an autism diagnosis: primarily with Major Depressive Disorder, Anxiety disorders, Bipolar Disorder, or Borderline Personality Disorder. I sort of held on to the Bipolar diagnosis long after i knew i didn’t have it, which sounds pretty ridiculous, but i guess i knew something was not ‘normal’ about me and that’s all i had to explain my ongoing struggles.
The frequency of misdiagnosis for women is hugely impacted by the lack of understanding and research into autism in women. Historically, most studies of autism have excluded females. Combine this with the biological need for ‘safety in numbers’ and community, women with autism grow up being better at masking their autistic traits in order to be accepted socially. The result is autism having been viewed for decades as much more of a ‘male’ thing, and the way female autism presents differently being largely unrecognised. I certainly had no idea women present differently before going through all this.
Learning about empathy has been a huge part of this journey. I’ve always considered myself unmanageably empathetic, but i’ve also been accused of having no empathy a couple of times. And i’ve never really understood how that’s possible. But as i’ve learned, there are two types of empathy: cognitive empathy and emotional empathy. People on the spectrum often have a lot of emotional empathy but can really struggle with cognitive empathy. Which basically means difficulty in understanding other people’s feelings if you wouldn’t feel the same way. It’s sort of like, if i can identify with what you (or an animal, or an inanimate object) might be feeling, then i feel your feelings as if they are my own, usually in a big way. But if i can’t understand WHY you feel the way you do, maybe because, for example, i simply wouldn’t feel that way if i were in your shoes, then i have very little empathy. This trait actually makes autistic people perfect candidates for abusers because there’s a struggle conceiving of - and therefore recognising - mal-intent. You can’t understand it yourself, so you can’t see it when it’s right in front of you.
One of the main differences between autistic and non-autistic brains is that non-autistic brains undergo something called synaptic pruning, where the brain refines and removes unused connections. Where a non-autistic brain removes about 50% of synapses, an autistic brain only removes around 16%. More synapses means more neural activity, which essentially means more information to process, more often. The biggest way in which this manifests for me personally, and for many, is overstimulation. I don’t like bright lights or loud noises, and for many years before diagnosis i’ve worn earphones in a department store or supermarket - with nothing playing in them - just to ease my experience. I really struggle socially in groups of more than three, and in bigger groups have been accused a few times of being rude because i don’t say much, or anything at all. Shutting down or having a meltdown, has been common for me when i’m overstimulated physiologically or emotionally, for as long as i can remember. The main way i’ve managed overstimulation as an adult who did not know they’re autistic is by drinking alcohol. It dulls the surrounding stimuli and inhibits overthinking when socialising. Interestingly, abusing alcohol is uncommon in high support needs autistic people, but very common in low support needs autistic people. It has been a crutch for most of my adult life - to get me through social situations, overstimulating environments, or emotional dysregulation. But my relationship with alcohol is gonna have to be a whole other post because when you throw a little hereditary alcoholism into the mix everything gets way more complicated.
I also have learnt i have delayed auditory processing, so it takes me extra time to process things that i hear. If i listen to an audiobook i constantly have to pause or rewing it because i just can’t process what’s happening. Arguments or important discussions are almost impossible for me because of this, without me crying or shutting down. Unless of course i’ve practiced everything i want to say, which is something i’ve frequently done my whole life. Often i’ll record things i want to say in my phone and listen to them over and over again to memorize them. I’ve always wondered why i only really feel comfortable communicating my feelings, good or bad, in writing. Because managing commincation verbally, understanding the other person and getting my thoughts across, takes so much work. It’s basically impossible. And hence my decision to start some sort of blog…
There’s a whole host of behaviours that made me meet the criteria for having autism, way too many to list here. They’re mostly under the subheadings of Social Communication/Interaction and Restricted Behaviours. Taking things literally; not understanding jokes; unintentionally changing my voice, accent and mannerisms; having areas of intense special interest; speaking about those interests whether the listener cares or not; not liking change (ie staying in the same jobs or rental houses for decades); textural food aversions (you couldn’t pay me to eat a bag of nuts or a mochi ball, or eat a salad that is touching something warm on the plate lol); food hyperfixations where i eat the same dinner everyday for weeks at a time; using a lot of facial expressions without knowing it; watching the same tv shows over and over; and so so much more. The list is probably 100 things long. Individually these behaviours are fine. But when you stack them all together it paints a very clear picture…
The best thing i’ve heard about understanding the autism spectrum is that it’s not a linear spectrum, which is how most people see it - and how i did, before learning about it. You have to think of it like a series of 20 dials, with each person on the spectrum having each of the dials set to totally different settings - some way up, some down, some in the middle, some not even turned on. So the ‘spectrum’ is more like a web than a line.
One of the biggest, and saddest, common experiences for both undiagnosed and diagnosed autistic people is a lifelong feeling of not belonging. Truly fitting in and making meaningful connections is a struggle, and certainly has been for me. I’ve truly never felt a sense of belonging anywhere. Wanting desperately to connect with people has led to some pretty dire dating experiences. But everything feels much more manageable now that i have a better understanding of myself. Some dumb tiktok i saw said probably the most profound thing related to this: everything changes when you learn you’re a perfectly normal zebra after a lifetime of feeling like a broken horse.
Unmasking (not hiding your autistic traits) is an ongoing process, and holy hell skill regression is real, but it’s all part of it and it’s just about learning how to best support my needs so i don’t crashout the way i used to - or turn to tequila the way i use to. Interestingly i was also diagnosed with ADHD, because even though we were testing for autism i met most of the diagnostic criteria for ADHD too. But after looking into AuDHD and discussion with the diagnosing practitioner, i KNOW i don’t have ADHD. I know it because the diagnostic stuff for autism is stuff i’ve dealt with my whole life. Whereas the diagnostic stuff related to ADHD is mostly things i’ve only struggled with for a couple of years - particularly around serious memory issues, attention issues, and concentration issues. I do have Complex PTSD that developed during an abusive relationship and has continued in my Domestic Violence trauma recovery, and the crossover between CPTSD and ADHD is really wild. So those memory/focus issues will ease up with time and the work i’m doing to heal.
Going down the rabbit holes related to what causes autism, and the rabbit holes of common comorbidities (PMDD, Hypermobility, MCAS, POTS, Ehlers Danlos Syndrome, Disautonomia, Histamine intolerance, Chronic Fatigue, etc) are probably best left to explore in another post because this ended up waaaay longer than i intended. And after being diagnosed with Myalgic Encephalomyelitis (Chronic Fatigue Syndrome) also resulting from the abusive relationship, i could write a whole essay on the connections between trauma, neurodivergence, and chronic illness.
It’s all a journey and while it’s frustrating that it took so long to get to this part of my story-and boy oh boy do i wonder what my life would have looked like had i found this out 10 years ago-i really am just happy to be here.
If you got to the end, thanks for reading :)