For starters, I am self diagnosed. I have brought it up to my family doctor, therapist and psychiatrist a few times. Each time I was shut down because I either didn’t have problems with communication (or some other dated reasoning) or that there was no point to be diagnosed as an adult because there are no support systems for that. Which was disheartening to say the least. I always knew I was not neurotypical but I didn’t have the words to describe it yet. I was just quirky, weird, introverted but also out spoken with a strong sense of justice. I began going down that rabbit whole because of tiktok, honestly. It had been on my radar before hand but I had an ignorant view on what autism was before that, I had never even heard of a female being diagnosed. I was however diagnosed with ADHD when I was 26. As well as schizotypal, bipolar disorder, borderline personality disorder, generalized anxiety disorder and major depressive disorder. To name a few. None of them felt right to me. Until that is, I started listening and reading about autistic women when I was around 28. I had just had a 6 week trip to the mental health ward and was unknowingly on the road to the end of the bad relationship I was in (a blessing). That’s when I started seriously thinking I might be autistic. Four years later at 32 I have accepted my self diagnosis as truth and don’t doubt it nearly as often. I do sometimes wish I had an official diagnosis but I understand that’s asking for alot. Most doctors dont have the knowledge of what autism can look like in women, let alone that it is a spectrum.
I look forward to hearing your stories!
On the possibility that no one will respond to this post since our group is just beginning and I often ramble, I hope I will have the confidence to try again to begin some sort of engagement here. Thanks for taking the time to read this. Take care!
*Artwork done by me, @ strange.roots on Instagram. Just thought this post could use some colour.
I was this years old 😅 meaning 34. I was diagnosed officially in March of 2023 after being self-diagnosed for about 3.5 years before that. Never suspected I was autistic beforehand much the same as you. I just knew I was weird, felt stuck between pleasing people (and thus trying to be neurotypical and failing) and trying to be myself. I’m still not there yet but knowing about other women experiencing a lot of the same “milestones” in life has helped me. Aspects of your story match mine to a T, including the part about rambling, haha. I’m very happy with communities like these where we can share and not feel lonely so often. Being alone can be a choice, but feeling lonely, especially when surrounded by people who, seemingly or not, “fit in” is so so so detrimental to my mental health. I don’t know what’s worse sometimes: receiving compliments for being “so well-adjusted” and “so well-behaved” versus being stuck in my own head overanalyzing every little thing I do and say and never feeling like I did well or like I behaved like a “good human being” /End ramble ;-)
How was the process of diagnosis for you? May I ask what country you recieved the diagnosis in? Don’t feel pressured, just curious. The people pleasing!! I actually ended up getting married and divorced thankfully but I was essentially an opinionless maid. I tried so hard to be close with my ex’s family, attempting to balance being perfect with opening up a tiny bit to try and form some connection. Needless to say it never happened and I always felt I was at fault. It was luckily a short marriage of almost 5 years. I look back on it now though and think wow they were so boring and never coloured outside the lines!! I went from having minimalist decor and floors you could eat off of because I cleaned constantly. To now reverting back to my teenage self, dyed my hair purple, and stopped putting the pressure of neat and tidy and being perfect on myself and just be me. It’s a work in progress but I am okay with that. Do you ever wish you’d been diagnosed sooner?
I was married in October 2014, separated in August 2015 and divorced January 2016 haha! The rest does not correlate but Jezus why do we do this to ourselves?! It’s like our need to be normal is so all-encompassing that we need to check all the boxes…
The process of being diagnosed was quite quick. I think I was lucky though.
I live in Belgium, and the diagnosis was done by an independent clinical psychologist. It’s not recognized by the government, so I cannot be request a full refund of costs nor can I request to be classified as a person with a handicap, but I don’t feel that this is necessary for myself. I work, in IT, for a very nice non-profit and I love all the people I work with, from colleagues to management. I’ve been struggling with autistic burnout since January (well, probably way before that but masking…) And they have been so understanding and nice. I wish everyone would have my employer honestly. Where are you located?
I think it’s just human nature to want to belong, at any cost necessary. It’s easy to fall prey to the expectations of neurotypical society. At least that was part of my experience.
I live in Canada. Our healthcare is a joke. I found out when I was 25 after an emergency exploratory surgery that I have severe (stage 4 I’m told) endometriosis. Ive had three surgeries at this point including a hysterectomy. I complained about issues for 13 years and was told it was in my head. That I was complaining or making things up. I have been repeatedly dismissed by doctors even when I bring my medical documents with me to appointments. And bringing up autism was the same. At this point I’m not willing to spend over a decade begging for a doctor to acknowledge what I’m going through. I try and make changes that I have control of. One day that might not be enough but it’s all I have the energy to do for now. I am currently self employed which will be ending soon. I use to have a great employer or so I thought. I managed a pet store for almost 8 years. I took medical leave and then they didn’t give me my job back. I was so devestated I didn’t fight back about employment laws. I’ve been struggling since. I am very glad you have a considerate employer. That stability is important. Especially while being burnt out. That grace is priceless.
I remember being 5 years old in my back yard wondering why I was different.
I always looked. I actually read books by a woman who worked with kids who have autism, and even wished it wasn’t just a boy thing because it sounded like me. Forgot about that until one day a few years ago I was looking at cnn.com and they had an article saying something like autism isn’t just for boys, it presents differently in girls. I read that article and cried. It all made sense.
Everything I’ve read since has just reaffirmed it, and my husband, having a normal brain and in the psychology field, took me step by step through the DSM criteria. I originally thought I had maybe 3 of the symptoms. As he went through it, he pointed out things I do that meet the criteria in every category but 2. So I can’t even trust myself to diagnose me since my brain works differently from the author.
I tried in 2016, before I met said husband. I got the dreaded social pragmatic language disorder for my trouble.
My husband and I have gone over the idea and I’m going to try again for a diagnosis. I went through autistic burnout after I was fired from yet another job and my husband has had to take care of me because I went from being a strong independent mother of two, to being unable to wear shoes because I strangle my feet with the laces. It’s been so hard to deal with this and I feel like I’m made of glass now after being steel for so long. There ARE supports for adults. Just as there are with all disabilities. Because this IS a disability. My husband works with people of all ages with various mental conditions, with autism being the most common, and naturally being an expert with it thanks to me.
So in October I will be going back to the only person within 100 miles who can diagnose me. All so if something happens to him, someone is taking care of me. Otherwise I would literally starve because I refuse to leave the house.
Also, I can trace every single bad thing that happened to me in life, and there was a lot, to an autistic trait. If I had known, or my mother had taken it seriously that I used to go scream and cry in a corner when frustrated instead of making it a somehow funny story, most of those things wouldn’t have happened.
Ive read a bit about how sometimes after people received their diagnosis that there was ‘regression’ in abilities and that they seemingly ‘became more autistic’ in part from learning to unmask. Something to do with certain aspects of ourselves being tied to masking so strongly. I too use to be a strong independent woman. I feel pretty incapable these days, I am much more aware of things that bother or upset me. I don’t just put a wall up anymore and suffer through things the way I use to. It’s awful to feel helpless. I hope you are able to get that diagnosis and find support. I also can link so many of the awful experiences I had to this day to being autistic. I was raised by a seemingly narcissistic single mother (who might actually be autistic, who knows - she doesn’t like me ‘trying to get in her head’ when I ask questions) she never believed me when I told her what I was going through or what had happened. She would undermine me in the doctors office when I would tell them about things - because if something was wrong with me people would think it was her fault. She use to say my father was probably autistic, she meant it as an insult and her knowledge of autism is zero. My mother created a hyper independent young woman who couldn’t ask for help to save her life. I struggle with perfectionism. Dealt with suicidal ideation the majority of my life. I instinctively isolate when I’m feeling any large emotion because I can’t bare to be a burden. My mother made up fairy tales about why I was the way I was. She use to tell me how I was going to save the world. That I was actually other-worldly. She hinted at fairy mythology mixed with her own imagination. Praised me for being an old soul. But at the same time also made fun of me and told embarassing stories on the regular. Like one time I was grounded (age 7-8?) And I smashed my wooden kids chair against the wall in a fit. When she came up to my room I was just sobbing and trying to put it back together. How is that funny? I was clearly in great distress. That bullshit about babies being able to learn to self-soothing (which is completely inaccurate) probably had something to do with her parenting methods. I haven’t talked to my mother in two years now. I shortly spoke to her for a couple months and before that it had been 4 years.
And I’m not one of those people who believes ‘your parents did the best they could’ that’s just not the case for many children. My mom often told me and my siblings she never wanted kids.
Except for the fairy thing and not wanting kids we could have the same mom. Mine also didn’t believe it was real if she never had it. You’re not depressed you just have to choose to be happy. There is no way my mother did the best she could. Also fairly sure I got it from my dad, who got it from his mom.
I think you’re right. When I lost my last job, I had a panic attack going to an interview and completely lost it. I think my burnout triggered in that moment. I lost the mask completely then. And now here I am. Unless things change, I will probably never be able to work again.
My autistic dad frequently said that I was on the spectrum (always that exact phrase) but refused to have me diagnosed. I grew up just assuming that I had a high-functioning (as I need relatively few accommodations; my apologies if this is an outdated term) form of autism.
Now as an adult, I still don’t have the resources to get a professional diagnosis. I feel very much at home in groups like this; I have many of the symptoms of autism though not all; I got 136 on the RAADS-R test. That test was the tipping point that pushed me mentally from “strongly suspecting I’m autistic” to “self-diagnosed autistic”.
My son was diagnosed AuDHD in 2021. I have been diagnosed AuDHD this year. I went through the adult autism assessment first. I’m very high functioning (albeit a dated term). I adore research and learning so did well in school and I’m a teacher now. The structure suits me.
However I’m a massive masker. I’ve been dealing with and hiding anxiety, self esteem issues, terror around social stuff, need for routine etc and it all came out and was validated in my diagnosis. It’s been liberating
Self diagnosed at 31 actually diagnosed at 32. Basically not functional with out my meds and guess what my entire county is out of right now…
Damn, that’s really unfortunate. I am sorry you are going through that. Is there a predicted timeline of arrival or is it unknown?
I’m not very knowledgeable about what meds you might be talking about. I know personally I’m a wreck without my ADHD medication Vyvanse.
I just found meds! Yay. I have 3 left so this is good timing.
Adderall is just a nightmare to get. If I hear nothing tomorrow I have to call around again
A lot of the stories in the comments sound relatable. Pondering about why I was so weird from a very young age, and finding different ways to cope with the weirdness. I also had a mother who didn’t really know how to help, who told me I couldn’t be depressed because I wasn’t suffering any hardship in life.
Fortunately both parents were also fairly tolerant and gave me a lot of freedom when I was a teenager (guess they were overwhelmed and didn’t know what to do with me). They never forced me to fit in and reacted within reason when I dropped school. So what happened is I found ways to live that are doable for me - I found alternative spaces where my weirdness was accepted, did some fairly reckless shit in my youth but learned good lessons from it as well, and now I live in a good quiet spot, can work remotely and just interact with people when I like.
An also autistic friend suggested I should look into autism when I was 35 and in a permanent frenzy of anxiety and depression, and most of the symptoms for autistic girls were just spot on and I finally understood my childhood weirdness. I guess I thought about it for quite a few years before coming to terms with it. I was looking into official diagnosis, was on a looong waiting list, and when they finally called me after 3 years I didn’t feel the need anymore. Whatever official support exists for adults in the country I live in is not worth it. I am not even comfortable with terms like ‘ASD’ anymore, because I’m not disordered, I’m different, and don’t want to receive treatment in a system where I am called that.
As for some of the physical limitations coming with it, I have found adaptations to manage life without having to attach a disability label to myself. One of my special interests, thanks to not-so-great joints tendons and bones hindering my desktop work, are alternative input devices. So far I am happy with my mouseboard v1 where I use my feet for clicking mouse buttons, which allows for a greater range of movements when I sit at my desk. It saves my tendons. I am also lucky (or well set up with a garden) and don’t work more than 3 or 4 hours a day ever, lots of outdoor activity inbetween.
So now I am happily Neurofunky. And meet a lot of other people like me, with their adaptations, and no need for a ‘Disordered’ label.
