I am the seeming unicorn of late-diagnosed adult women. I didn't self-diagnose first and go to a GP with my suspicions, or have to fight for it, or have a lightbulb moment of discovering it myself, it was kind of forced on me. A year ago, I was in NHS CBT and my therapist decided very early on that I showed autistic traits and needed to be assessed. I was deeply unsure about the diagnosis from the start and truly had not thought I would meet the criteria. I have an ADHD diagnosis which I cannot dispute; it's severe, I am a completely textbook example of the inattentive subtype, and being on Elvanse for a year has made a dramatic difference. The autism service that diagnosed me seemingly had no idea about the overlaps between ADHD and ASD, and that gave me pause straight away when the ASD (support level 1, so mild) was diagnosed.
My ADOS results were also weird - my communication score was below the 3 point cutoff at (I think) only 1 point, but the social reciprocity score was beyond the ASD range - I scored 6, which placed me in the Autism category. So my total score was only one point above the total ASD cutoff, but they seemed to feel there was no question due to my social reciprocity score, and said they quite often diagnose women a few points shy of the total anyway.
Since living with the diagnosis for a year I have started to see how certain things do fit, but some things do not, like verbal interpretation/idioms/figurative language, which I rely heavily on, and most people's accounts of sensory issues I can barely relate to at all - I feel chronically and perpetually understimulated rather than overstimulated in every sense other than touch, 90% of the time. I realise this is a part of sensory processing disorder in itself, but I have yet to encounter a single other autistic adult who experiences hyposensitivity/sensory-seeking across almost every sense. This also means I am largely insufferable for other ASD folk to be around - I talk too much, I am too loud, I need bright light and strong scents and loud music around me or I start to get horribly dysregulated (at my final ASD appointment I remember being asked if I wanted them to turn the lights down, and I think I responded 'oh God, please don't'). This is better on ADHD meds but it's not gone, and it makes me feel like autistic spaces are simply not for me because I'm a burden to most other people present. It's also next to impossible to accommodate for in the workplace because I'm pretty sure NT people would find a lot of the sensory input I require to focus and calm down obnoxious as well.
But my biggest problem is this: reading my diagnostic report has destroyed my once-solid sense of self, and I feel like my life is ruined as a consequence.
The report itself is essentially a multi-page litany of my social failings. It says, among other things, that I don't use gesture much, that my eye contact is very abnormal, that I regularly use unusual turns of phrase, that I interrupt constantly, that I perpetually turn the conversation back around to myself. It makes me sound annoying as ***. And I had no idea that I did any of these things. I knew I had life-disruptingly intense interests and stimmed and had odd repetitive behaviours in private, and so on. But I really did not think my social interaction was so bad. I have never been socially anxious or anything.
And now I'm obsessed with the report. Every time I talk to another person I am now scanning everything I say or do to make sure I've not missed anything, to make sure I don't hurt anyone, to make sure I'm not disliked. I am obsessed with how much eye contact I'm making or how I'm gesturing, whether it's too much or too little, or whether my tone is off, and I still can't seem to spot them. I have lost the ability to be assertive or to say no because I feel I cannot afford the additional risk of upsetting or losing someone. I am terrified to talk about myself at all because I don't know how much is too much. I have now deleted all my social media accounts because I feel like simply by being a person I am unlikeable, and the only solution is to isolate myself completely. I feel like even talking to a person I love is forcing myself on them and therefore harming them. I am in an endlessly recursive cycle of monitoring and monitoring my behaviour at every moment, which makes me feel more awkward still and is exhausting. I am a lecturer and it feels like this has affected my lecturing significantly for the worse; I have no confidence in my ability to communicate any more. All I can think of is what I'm doing abnormally that I might not be picking up until it's too late. I don't know who I am any more.
I didn't used to be socially anxious. I am now.
I have had many experiences of friends becoming angry at me and disappearing out of the blue. I'd always figured it was their issue. It turns out it was probably mine all along, and now every time it happens I can't be angry at them, only at myself. And now I know it will never change.
Before I was assessed, I asked my then-partner of six years, who worked for the NAS at the time, whether they would hypothetically be prepared to date an autistic person. They did not know then that I had been referred for assessment, and said they were unsure and felt like it might be weird because of the work overlap. When I was diagnosed they would not talk about it with me. A few months later they left me. That wasn't the only reason, but the diagnosis was the point at which things began to go really sour between us. I've been on my own ever since and don't feel like I will ever connect with another person again.
I have always struggled to keep friends and the few I had have dwindled to none in the last year, perhaps because I am obsessing over my social behaviour and maybe it's making me seem even weirder. I now have no support network at all, am lonely and isolated all the time, and do not feel at home amongst other autistic people either because I resent my diagnosis, refuse to disclose it to anyone, and am so ******* tired of Aspie pride stuff. I am glad there are people fighting for acceptance, I am glad for people who genuinely do feel pride, but I feel like it is expected from me by default. And I didn't sign up for being a political activist about my own life, being rejected and viewed as subhuman is not something I wish to celebrate, and the 'autism is the next phase of human evolution' argument generally goes along the lines of 'we are great at attention to detail, we are good at focusing even on mundane tasks, we say exactly what we think', except severe comorbid ADHD and a tendency to agree with what anyone around me says because I don't want to give people any more reasons to hate me kind of negates all of those things.
I had always thought I could learn to make friends if I only tried harder. I thought I wouldn't be on my own forever. I thought I could get better. The diagnosis has made me feel like I am a hopeless case. I just want to get better. I just want to connect with people. I don't want to be ******* special and unique. I want a normal meaningful life.
I don't know what to do. I have contacted the service who diagnosed me to ask if there's any possible way I can be reassessed for other things that might be causing my traits, because I need to believe this isn't permanent, I need to believe I can improve and change. I don't want to die, but if the rest of my life is going to be this marked by loneliness, if I am going to feel guilty every time I inflict my presence on either ND or NT people, if I can't change myself and make friends and be less selfish and demanding and negative and inflexible, it doesn't seem fair to anyone else to continue inflicting myself on the world. And I'm trapped in endless loops of obsessive thought about the minutiae I might be missing in every social interaction I have, now, and I'm exhausted. I just want it to stop, and I know it would stop if I died.
