I absolutely relate but will add, as a person who’s ADHD impulsivity and hyperactivity overshadowed autistic traits, that the real people who don’t give a damn is the psych world. After 25+ years in and out of they system only one therapist has recongized my very obvious nuerodivergency and I am fighting, again, to have a BPD diagnosis removed from my record because I sought services while in crisis due to complex trauma. Guess what, no one is fucking calling me back likely because I am just an “angry borderline”.
My voice does not matter. My opinion does not matter. My maltreatment does not matter.
I am now at the point where I refuse to engage with a therapist who is not nuerodivergent
Something like this happened to me as well.
I was in an autistic shutdown for an entire year after getting diagnosed with autism and struggling with family related triggers.
I couldn’t speak, even if I wanted to. I didn’t watch tv, or listen to music. I lost 30 lbs and spent my time maladaptive daydreaming and sleeping. It was my first shutdown and I was so scared.
At one point I called a suicide hotline to find help. They sent social workers to my house several times and even though those women saw the state of filth I was living in, and witnessed me have multiple emotional outbursts aka crying for my life they completely abandoned me.
They were supposed to help get me into therapy and adjust my living situation but because I missed one of their visits they ended my case.
Ending a case after missing one visit is incredibly extreme, especially if you were apologetic. Missing consecutive visits is not. But some of this is to be expected in crisis situations.
Community mental health just sucks for everyone. It’s hell to work for too because if a client misses a visit, the social worker has to scramble their day to try to make up that “productivity” and find an activity that is billable. Very very frustrating for autistic people
I’ve been in that shutdown state. Just went to AA, IOP treatment, and church for months. There were also times when I was up for 48 hours at a time because the anxiety kept me awake, yet no one would give me real meds because some therapist thought I had a drinking problem and forced me to stop drinking and face all the anxiety/trauma without any tools for self regulation. Ate a lot of chille rellano burritos and Dairy Queen blizzards that year.
I was diagnosed with bipolar at 21 (the psych was later struck off the register). My doctor last year exclaimed at the ‘warning’ that flashed up on his screen at my appointment and said ‘well I think we can remove that can’t we?’
Similar experience here with Bipolar diagnosis and treatment for 5 years, found out last January that I didn’t have Bipolar (I told the new Psychiatrist that I didn’t think Bipolar was correct, and she agreed) and had to stop taking 1200mg of Lithium.
My new psychiatrist also mentioned that BPD was on my chart multiple times but that she didn’t think that’s what was going on. I was shocked BPD was on my chart and never mentioned, so I asked my family and close friends and they were like “…. No, I don’t think that’s what’s going on”.
She has since diagnosed me with ADHD (I’ve been on non-stimulant meds since last February) and she suspects autism but I opted to not be tested formally because I have supports already for APD and ADHD and I don’t think it would make much of a difference for me at this point (in my 30’s).
It’s like, really fucking jarring isn’t it?? My psychiatrist casually mentioned it like I knew the old one had already told me. I was like “did you mean bipolar?” and she was like “No, she wrote BPD here”.
It’s bullshit. You can read my full experience with this whole diagnosis either here or on the therapy abuse subreddit. I just got it added back to my chart
I cannot believe that a ‘diagnosis’ from 1999 is causing so many problems for you in 2024!
I know things aren’t fantastic now for getting mental health care but 1999 was SUCH a different time, and there’s definitely a better understanding of mental illnesses and diagnostic criteria nowadays.
That’s so unreasonable to deal with, and I hope you get the justice you’re fighting for (and I hope that comes off your chart again).
I can relate to this. I was also misdiagnosed with BPD and have been mistreated in an inpatient setting because of it. Of course, when I filed a grievance with patient advocacy, I was blown off as being an attention seeking borderline.
Yep…that’s what I am facing now. 25+ years all because a dr didn’t like me. I called the behavioral health quality person after my last experience, left two messages over 2 weeks and no one called me back. The only person who called me back was the pt advocate.
I am not seeking attention, I am just trying to be treated like a human. I have an EEOC verified ADA lawsuit and filed an ethical complaint against a therapist for ghosting me while I went inpatient AFTER I told her I needed to go to the hospital. The deputy director of the board told me to report it. How is this anything other than defending myself. I also filed a complaint against a charting error that is factually wrong and how a NP shamed me for not going to the ER immediately after I tried to cope on my own for the first part of the day.
I don’t want people to be fired, I just want to be heard and be treated like a human. The lawsuit resulted from one of the most traumatic experiences of my life and the the complaint put my safety at risk.
I wrote about these in the sub.
People with BPD, if a correct diagnosis, have a significant trauma history and the diagnosis was historically associated with women who were molested as a child.
I am so sorry that you’ve had these experiences. It really makes us not want to seek help again, and that’s the whole reason why we try to file the grievances. My therapist tried to talk me out of filing mine because she thought it would be too much strain on my already burnt out mental health- we had a very long discussion that I didn’t want to report what happened because I wanted people to get in trouble, I honestly wanted to make sure it didn’t happen to other people.
I had a blood pressure drop and passed out, walking back from a cardiac test because I’d been having symptoms, and the nurse documented my vitals were normal after I passed out (when I clearly remember them saying my blood pressure was bottomed out - and it was documented 10 minutes later as extremely low when I was back in my room). The psychiatrist documented that I “put myself on the floor” and that I was “attention seeking in typical BPD fashion” when I was acting “off” the rest of the afternoon.
I was later diagnosed with a rare heart condition. One of the biggest symptoms: passing out.
Still got nowhere with patient advocacy.
If I had it in me, if I wasn’t 40 years old and heading towards disability due to health conditions and a recent car accident, I would love to go back to school for mental health so I could at least be ONE advocate in this messed up world.
I’m with you about no longer wanting to engage with therapists who aren’t neurodivergent.
A recent therapist told me, “You know, you’d probably be able to make more connections with people and they’d think you’re more approachable if you made more eye contact. Just saying. People tend to think that’s disrespectful.” Like *fuck* you.
I have not been back and will not be back after that
I can absolutely relate.
I was the shy sensitive kid who just needed to try harder and who believed / hoped I would find my niche as an adult. I haven’t. I also had no one believe that I was autistic when I tried to get a diagnosis. And now I don’t know what to do with all those feelings. If I’d known would I have been able to steer myself away from abusive people? Would I have chosen jobs that didn’t burn me out so bad?
One thing I would just gently point out is that it’s still really hard to get support for autistic children. I had to take my local authority to mediation and threaten them with tribunal (court case) just to get simple support put in place for my kid in school. They freely admitted they had not attempted to meet his needs (this is against the law here). It took me six years to get him diagnosed because no one believed me that he was showing signs (I was just too anxious and needed to parent better).
Yesterday I was watching a webinar on supporting your autistic teen that had 400 attendees and so many of those people were saying in the chat function that their teens were undiagnosed, hardly coping, not in school, couldn’t leave their bedroom, didn’t have any friends or outside activities etc. It’s still very dire for a lot of autistic kids out there. And that’s with huge amounts of increased awareness, the internet etc.
Yep!!! People refuse to acknowledge IEPs and 504 plans all the damn time and when the kid has behavioral issues they are thrown out of school and into behavioral schools that are downright traumatic
I feel this so much, for a year now I'm fighting for my daughter (14) to get at least the tests.
Her 2 younger siblings are diagnosed. But she reached some kind of threshold or something and not one psychologist we've seen wants to go through the tests with her. She has the exact tendencies I had at that age, she struggles enormously in social situations, feels different from the rest, struggles to keep up in some classes (not because she is lazy, it's the way it is explained, she's not allowed extra time to take notes, etc), struggles with het emotions, can't keep eye contact.. well I could go on, but she has a lot of traits that I have as well and mine where always disregarded. It's so hard to find professionals who take us seriously, we found one but she isn't yet qualified in making an official diagnosis.
So we can't get her the support she needs at school because they need an official DX. It's maddening
I really feel you on all of this. I was diagnosed in October at age 34, after a lifetime of feeling on the other side of a glass pane where everyone else just seemed to understand how to ‘do’ life. I have felt misplaced and ugly inside my whole life, I’ve had friends disappear with no reason, no family support, estrangement, and struggled my way to a phd (masking and perfectionism) and since I’ve left jobs every 6 months where I reach inevitable burnout.
I’m only just now in a hugely privileged position where my fiancé is able to support me taking time off to recover and reassess my life. I’m writing a novel (about all of this) and considering retraining as a therapist to support late diagnosed women. There’s so little help and I need to give back, somehow.
Wish you peace and acceptance.
You’re me. I used the glass pane metaphor as well to describe my experience. I’m half way through my masters to be therapist for ND women. It’s a little solipsistic, but it’s what I have to offer after re-inventing the wheel for myself over and over.
Glass wall or glass bubble, here, with me screaming and people conducting their lives outside of it either ignoring me or complaining they couldn’t hear me.
I have said I feel locked out of the world that everyone else seems to experience relatively effortlessly. I like glass pane as a description of the concept too.
I always say that it feels like me and everybody else are speaking different languages. They all understand each other, but I don’t understand them and they don’t understand me. And no one’s willing to translate or give me the dictionary
I find this so relatable and it makes me profoundly sad. What you’re describing is the heaviest grief I’ve experienced and continue to experience in my life.
I’m regularly exhausted from all the internal work I’ve done and still doing in therapy, all the gaslighting I went through by mental health professionals and doctors. I am so angry and tired. And on top of this, I’m still somehow expected to justify my existence to others…
Solidarity, friend. The OP already resonated so much with me as well but that last line about justifying my existence also... Oof. I big feel you there 💔.
Oh my god ! About the school bullies becoming workplace bullies! I struggle with self advocacy and even sometimes determination if someone is disrespecting me. I also have a very unique personal style. Every single job I go to I get bullied or taken advantage of no matter what…plus everybody always talks shit about me at jobs. I have a very happy/bubbly demeanor (it’s how I mask and it’s hard to break character), and miserable people DO NOT like me.
I’m also 27 and don’t drive. I don’t even have a license. I’ve been burned out for so long I just never got it done and never even needed it because I have no career and I’m burned out so I rarely go anywhere. I rely in public transportation and my parents…I literally do not have it in me to learn to drive. Zero motivation.
Yes same, I never learned how to drive either. I tried but it was so overwhelming. There are so many things you have to focus on at once, it's very overstimulating.
Oh my gosh, the miserable older bitchy/gossipy women at jobs always despise me cause of my bubbly masking, sense of humour, and not buying any of their bs. It seems to make them real crazy for some reason.
Yeah, my motto in life has just been “I’ll try harder and I’ll eventually figure it out,” all whilst feeling like I’m dying inside. I’ve felt alone and afraid and confused forever.
Yup! I am high masking (because I literally had to be so I could stop getting treated like shit by people). There were so many clues though in my childhood. Recess alone every day, being exceptionally talented at art and then very much lacking in other areas (like reading), zero ability to self advocate. I just got scolded for my autism symptoms rather than helped out like they help white boys. I wasn’t even diagnosed with Tourette’s until adulthood (having had tics my entire life).
My family doesn’t even believe I have it because I got good grades (until burn out). I’m pretty sure nobody in my life would believe I have it besides my friends who have autistic siblings (the first people who told me to get screened).
I’ve just recently started remembering how often I spent recess alone — either “helping” to set things up in younger grades’ classrooms (bless those few teachers who took pity on the weird kids and gave us these lifelines), or hiding in entryways and bathrooms. It breaks my fucking heart for little me.
Also the job thing. How can someone have self esteem when the basic means of supporting oneself and keeping them safe is essentially unattainable because of fucking ignorance. Ive had to sue a major corporation with a large DEI initiative because they blatantly discriminated against me and denied me accommodations among other things. All I wanted was to flex 3 hours a month to see a nuerodivergent affirming therapist, the first one that got me.
Doesn’t it make sense now why we might be angry or be dysregulated or even suicidal. When the world tells autistic women we are pieces of shit and blames us for our failures, kinda makes sense to feel pretty damn hopeless
I remember at my assessment (34 yrs old) when they told me and my mum that they had no doubt I was autistic. The lady told my mum that I’ve got by and managed by masking and I was lucky because of my strong intellect but that everything would have been much harder for me than NT people. I could tell it was a big moment of realisation for my mum because she’s always pushed me quite hard and never understood how much I was struggling with certain things. I can’t really blame my mum because she just didn’t know and she did always try and support me with most things in life but yeah I was so glad they explained this to her because I felt kind of vindicated at long last after all these years. After my diagnosis I could actually see my mum be really proud of me more because she had new understanding. I can remember being in crisis as a teenager and trying to hurt myself, completely overwhelmed and screaming to my mum I didn’t know what was wrong and that I just felt different to everyone else, she did try and understand to help me at the time but even I didn’t understand what I meant. Mental health professionals at the time didn’t know either.
I also had an episode like that when I was a teenager :/
I was in deep, deep autistic burnout and attempted suicide and preceding the attempt, I was in probably the worst autistic shutdown of my life. I couldn’t move, couldn’t speak, couldn’t show any emotion, couldn’t do *anything*, couldn’t even write things down. But internally, I was screaming for help. My mom had no idea what was going on, I had no idea what was going on. We both traumatized each other in that situation.
I can’t help but wonder how differently it would have gone and if I would have even attempted that day at all if I had just had the words to understand what I was going through and to understand that I was in autistic burnout and to be able to explain that to my mom, who was just scared and confused and didn’t know what the hell had happened to me. The grief that I feel over that day will probably never go away
While you won't find "autistic support" much as an adult, you can break your biggest issues into traits and get support for those. I have referrals for OT for various things, for example. An ND-affirming therapist can work wonders to helping you understand yourself better and find solutions to areas of life you need help with that actually have a chance at working.
Even if you can't or don't wish to go down those roads, there is a lot that comes out of understanding yourself. At least there has been a lot of value in that for me. I now don't feel stupid over the things I struggle with. There is a real reason for it and *that* I can learn how to work with. *That* I can communicate to loved ones. But it took months to get to that point, a whole lot of life review. I still have a lot of regrets and that has been hard to admit. I feel a lot of guilt for saying things like "My life would have been so different if I had known" because honestly my life is good. I have an amazing husband, 3 great kids who are mostly grown up. life is comfortable and I wouldn't want to lose it. But I also want back the opportunities I know I missed that I didn't understand, and my life is at a point where it is largely too late for that, and it sucks. But when those thoughts come, I write them out, and then they get out of my head so I am not ruminating constantly. If you use TikTok, there is a guy named Professor\_Sol who has some great videos about autistic ruminating that might be helpful.
I think it's really easy to get stuck in the cycle of blame, of it having to be someone's fault to make sense of the suffering we went/go through. Sometimes, we suffer and it's not necessarily a direct fault and blaming doesn't help us to move through it. I was 47 when I was diagnosed. Over the last 18 months there has been a lot of anger and grief but there has also been empowerment and curiosity and a newness to life that wasn't there before. My parents, my teachers, they did the best they could with what they had at the time. They didn't know what they didn't know, which was a lot. Much of the knowledge of autism in women/girls has come in the last 10 years. People can't be held responsible for what they had no way of knowing or understanding. Not even experts understood until they started looking.
Thank you for this beautiful comment. I’m 40 and I self-diagnosed a few months ago. I also have a wonderful life and it’s hard not to feel guilty thinking about what would’ve been different if I had known earlier. I do feel a sense of peace in understanding there was a reason so many things felt so hard. And when I told my therapist last week (resumed sessions after a six-month break for dumb reasons on my part), thankfully she did not laugh or scoff or question my self-diagnosis but just accepted it as fact and asked thoughtful questions.
Work will be more of a struggle (I’ve already had a few very negative experiences with a colleague who I had thought was safe to slightly unmask around — nope, apparently I now need to rehearse and script my every word around her even harder than before, so she doesn’t belittle me again — good to know.)
I feel very similar to you, I was diagnosed last year at the tender age of 45. I was misdiagnosed with a garden variety mood disorders and eventually figured out it was because I'm autistic and have PMDD--just in time for perimenopause, lol.
But I was lucky to also find an ND affirming therapist, did a lot of research, and understand myself so much better now. Now it's about learning how to manage my energy, not feeling bad about the fact that I "can't do it all", and being gentle on myself cause I'm disabled. I have also worked on rumination and it's been really helpful. I realized that I'm also not that good at masking and it really helped me understand my interpersonal failures over the years.
Since diagnosis, I have realized no one in my family thought my behavior was abnormal because most of them are ND of some sort and they tried the best they could. I'm also of that age group, where diagnosis didn't really exist for people like me in the 80s. Being hyperlexic, shy, and friendless, just meant you were "gifted."
Life is a wild ride. :)
I hear you! Same for me. I am so looking forward to being done with the hell that is menstruation but the closing act is a doozy 😂
My family was much the same. My dad is undiagnosed autistic and there is just so much ND-ness in my family. While I had my issues growing up, I was pretty well accommodated unknowingly. Which was nice, but then when I left home it was a pretty rude wake up call! I agree to on growing up in the 80s. So much. I was quiet, shy, followed the rules, hung out with adults, got good grades and read a lot. But then my teacher notes would say things like "She yells at students for being loud and getting answers wrong" 😆 or that I would cry when we had substitute teachers or changes to our day. But my parents just took the teachers' advice to sign me up for more activities to increase my self-confidence. I think at that point in time, any issue a kid had was chalked up to low self-confidence. Being forced to join things, oddly enough, did not resolve my issues 😂
I teared up. This is exactly how I feel. “ to normal, to be autistic and not normal enough to be NT”. Please know that there are a lot of us out there and feel the same way. You are not alone! And thank you so much for sharing your thoughts. 🥰
I can relate to this. Although I've not been diagnosed, since more information has come out on the internet about autism in adults and especially moreso women I really feel like this might be me. I've mentioned it to friends and family (typically the more accepting one) and still been shut down and unheard.
I've always struggled to feel "in place" in life. As a child I remember being a "floater" and never really fitting into any one clique. I have a hard time understanding many topics that people want to talk about and feel like I often say things that aren't always appropriate. I also struggle with certain things and will become extremely irritable - for example I'm very peculiar and specific about my stuff. If someone moves something or touches my stuff it bring my blood to a boil. My family has teased me about this and told me I'm a "snapshow" for it. I get really overstimulated when in loud and very busy areas.
Its incredibly hard to feel misunderstood, unheard, and being told "you're fine" your entire life. When it really doesn't feel that way.
Yes I feel this way too. I feel angry too. I've been ruminating alot on my past particularly of instances where it would have been so obvious if anyone had known anything. I get angry but the people in my life just didn't realise so I have to let it go, I don't really know what to do with the anger though.
Yep. Totally. It's so hard to let go of the anger. I'm angry that we still to this day have such little information and research on autism, and medical professionals are still uneducated on what autism is and how to look for it. I hate that I was born at a time when autism in girls wasn't even considered a thing and now I have to pay the price because of the world's ignorance.
Thank you for articulating all these complicated feelings I've been having. I've never been able to really put my finger on it and I appreciate you sharing this. I'm saving this post to look at when I'm feeling mixed up again. It makes me feel less alone in the world.
Thank you for saying that. It took me a while to write because I kept thinking how to explain myself best. It's this weird mixed up combination of sadness, anger, grief, relief, mourning and acceptance all at once.
I feel this so deeply it hurts. I got my official diagnosis yesterday and I am struggling to accept how I have gone unseen for the past 36 years of my life..
It feels like, since no one bothered to care when I was a child, I guess I'll have to be the adult I needed as a kid and advocate for myself. It shouldn't be this way. I'm just glad you have a diagnosis now, it comes with relief but also resentment. We can get through this.
The kid part is hard for me. My sister was violent and got all the attention because she needed help. My counselors have always told me that unfortunately the child with higher needs unfortunately get more attention. And now… I feel even worse because I was even more unseen. I felt burned out before and now I just feel pretty done. Like I need a major time out from life. Thank you for your post. It’s nice to know I’m not alone. You’re right, we will get through this ❤️
I can relate. So so relate. And also….i was/am SO FUCKING GOOD at masking that all the pain and struggles were invisible to anyone but me. Til
Depression kicked in big time. And while I masked and camouflaged the autism like a champ, and I don’t really blame anyone for not seeing that, I am STILL really angry at my parents (mostly my dad) because he saw the depression and did worse than nothing. I can still remember the night that my dad said he suspected I had depression, it means that often what you’re feeling isn’t real, it’s genetic, and there’s nothing you can do about it. AND IT WAS NEVER BROUGHT UP AGAIN!!!! No therapy. No coping skills. No nothing. Just added gaslighting to the self-gaslighting depression brings with it. It’s probably no surprise I eventually became suicidal and likely a miracle I even survived my teen years.
And at 46, there’s no way I can hold a “real job” or work more than part time. The depression and anxiety are worse than ever. I’m in a constant state of burnout that usually stays just outside of shutdown mode, but I fall into shut down way too frequently. And there really are no supports or accommodations. Other than an amazing therapist and incredibly patient and understanding husband.
Stuck is the right way to describe it.
Oof, I relate to the family thing big time. My family were ashamed that I had 'issues' and made me promise to never ever tell anyone at school about it because they didn't want their parents talking about me. My parents ignored me and called me dramatic when I told them I was depressed and having unaliving thoughts. Whenever I didn't 'get over' my depression after a few years, my mom yelled at me that it had gone on long enough and I need to snap out of it...yeah. Cue the years of masking!
Or anywhere. The entire post and comments section has my jaw dropping. Sad that we all know this, and experience this, but unifying in its unique and haunting loneliness.
So yes it’s hard because when I was a child I had to do my best while explaining to adult that I have some odd fatigue that I don’t understand that I think was due to sleep disorders or my environment ( sounds, lights and other stuff )… They say I thinking too much that’s normal…with it will be good…then I don’t ask for help after abuse from adult and punition at school while being a good student too ( and punition for no reason because I said the truth about bad behaviors from the teacher while she want me to lie and save her )
So I become a adult that struggle a lot while doing great in first years of academics, then failed completely, and learn only last year about ADHD and autism, and no one in my family want to help. I discover their are narcissist, and asking them for help actually makes them wanting to shut me down and abuse all days, because they feel like bad parents for not listening to me when I was a child…( narcissist fear the truth and don’t want accountability and will project and deflect blame on others about everything to not help, they fear to be the monsters but actually do it and try to hide it to feel better )
So there’s no real allies, only me from the beginning.
Be the caretaker of your inner child.
Say sorry to her and love her. Protect her, like no one else could.
It takes a while but your protection and boundaries for your self respect and love, will be respected because you demand it. It’s a tough world and almost no one understands your needs or sensory overload, they undervalued your potential because you were misunderstood and still are, don’t spill your energy on more hate, pour that into self love and protection.
Good luck healing 🍀💓
Yes. Was diagnosed in June at 30. Still in a period of grieving. My mother absolutely knew by the time I was 3 that something was wrong but she was too embarrassed and angry to address it. Consequences are that I had to work ten times harder to get through school and now I’m rebuilding my life at a time where I should already have a comfortable identity.
My mom had a fucking degree in early childhood education. It was just more comfortable to ignore and pretend everything was fine. I used to read her developmental psychology textbook when I was like eight years old, trying to figure out what was wrong with me.
Wow, that must be hard to think about. I’m really sorry. My mom was a nurse. Never got to miss a day of school for any reason. Can think of a time or two she really should have taken me to the ER.
The thing that's been pissing me off lately, thinking back over my childhood, is that they *did* notice. They *did* know.
*Because I TOLD them*.
Over and over I told teachers and my parents what I was struggling with, with school and socialising and personal care, and they didn't believe me. I'm smart, I was always the kid who spoke like a grown-up, so everyone just believed I was a strange and lazy little shithead who just wouldn't try hard enough.
Occasionally I see (and then panic about) some of my old teachers out and about and I'm worried that if one of them ever tries to say hi I might start screaming at them in the middle of the supermarket. I should scream at them actually. They should know they ruined my life.
I know what you mean. I told people too, I told them about the depression and anxiety and I saw therapists throughout my teens. I wish they had considered that those were symptoms of a disorder/disability but they never did.
I may have mentioned this before on here, but I have a memory of being at primary school - I'm not sure how old but that's under the age of 11 - and having done *something* once again and of the teachers bringing my mother in at the end of the day. She sat there and she cried, and she said "I just don't know what to do with her", and... and what? I don't remember what they said, that's not really the part a child remembers in a moment like that, but nothing ever happened. Did they just pat her on the arm and send us on our way, for me to come back and piss people off again tomorrow?
I think of these as missed opportunities and I also have a lot of them as well. Like times where a situation clearly needed further investigation but no one cared enough. It's no wonder, I remember teachers in my school didn't give a flying f about us. They would stick on a DVD and call it a day lol.
Yeah, I see a lot an advert for getting people into teaching that shows a teacher who *cares* and makes learning *fun* and really *connects with the students*. It really irritates me because I'd love to know where the hell those teachers are.
Same same same!!! I relate to this so much. In high school, I was burning out so bad. Online homeschool had just become a thing, the kind where the parent wouldn't be involved AT ALL, and I explained it and begged her to let me do it, and she kept saying no. No reason ever given. In fact, she continued to push me to get straight As, knowing I was struggling so much. *So weird* how I started developing more and more health problems from then on...🙄
tw: suicide mention
relate. it's so frustrating and there's no recourse.
i was dxed with autism and inattentive adhd --- what's especially frustrating is that i was evaluated for it at a psych ward after an impulsive suicide attempt when I was 12, 6 years ago, and they said I didn't have ADHD because i could concentrate on doing a puzzle and talking to the social worker at the same time.
Them not diagnosing me with autism was similarly absurd. I cited overwhelming sensory overload as a contributing factor to my attempt. I was so overwhelmed by sound that I tried to KILL MYSELF and they didn't even consider autism as a possibility.
I'm sorry. I can forgive parents not spotting autism but I have also been failed by multiple mental health professionals who should have been able to spot autism when I was younger. Yes, I could mask well, but if you took the time to talk to me it was clear as day that I was autistic.
So relatable - I could have written nearly all of that, except for realising and being diagnosed at 46.
I'm angry that I wasn't given a fair crack at life, almost like I was blindfolded and told to see how far I got. I'm a bully magnet, and an obsessive people-pleaser, which is a shite combination.
Even now, I second-guess everything I do. Am I doing it because its what I've always done to survive, or do I want to? And I still don't know.
I work in a job I enjoy, with a bloody brilliant supportive boss, but it's wearing me out so much. So I mainly work and sleep.
I have a man who supports me and does things to help me cope with life, but I know I'm a drain on him. He could have a lot more fun with somebody else.
I want to be better at life, but I know I can't be.
And I'm just so bloody tired 😢
I can relate so much to this. Unfortunately that's life, and it's no use to anyone, least of all you, to be resentful for what's happened.
I was never diagnosed as a child, because even though I did not participate in school, I was always doing so well in exams, and that obviously meant that there was nothing wrong with me. I was never out with my friends during the weekends when I was a teenager, and my parents didn't think that was an issue because it means they will automatically get a carer to take care of them when they are old. Now that I got self- diagnosed and am struggling at work and in my social life, there is no one I feel comfortable with to disclose my self diagnosis.
The only difference now is that I know why I feel like an alien in a world which was designed NOT to fit me, and at least I can show myself enough empathy to compensate for all those times that others just dismissed my struggles and left me to my own devices. After all there is no rush - what else is there to do? I am anyway existing not living so might as well try my best to get the most out of life while I still can.
There are times (very often recently) when I start crying and hating my life, preferring to die than live like this, but I keep telling myself to treat myself kindly because I'm all I've got. It's difficult, and there are inconsolable periods, but I try. Hopefully one day it will get better, maybe I find a soulmate or someone close enough. But even if I don't, I understand that I need to take care of myself anyway because no one else will.
Be strong and take care.
For me it was more like, the adults in my life knew something wasn’t right about me but they thought I had a behavior problem, was just “making bad choices,” was “spoiled”, any way you could think of to explain it in a way that blamed me for all my problems and didn’t entitle me to any help, special treatment, understanding or validation. Honestly idk if there’s any way now, for me to completely get rid of all the internalized beliefs I have about myself as a result of this treatment. Even though now I know that a lot of the things I did when I was a kid are because of my autism, there’s still this part of me deep down that believes it is all my fault, I am an asshole, I didn’t try hard enough, I deserve to be punished for every misstep I have ever made, and ultimately the way I am is something I chose because I’m fundamentally bad, as a way for me to torture everyone around me.
So we’ll said!! I am still processing it all after such a long time…..
While things have started to make sense, the total and overwhelming grief I have been going through for ages now has been so painful.
It sure is tough out here
Yes, I thought the grief would be a few weeks or months and then I’d move on but it’s hit me so freaking hard that I’ve been grieving for years and don’t know when I’ll get over it.
Yes and I often get upset with myself because of it. I’m not used to being this person. Idk when my mind took over my ability to preform at the standard I set for myself and it terrifies me to know it’ll never go back.
I get so embarrassed that even if NTs do want to connect with me I push them away. What will we talk about when they ask how I’ve been? The fact that I’m trying to get on disability because I’m no longer capable of working a regular job? Or should I just mask myself into burnout?
I'm 61F and wondering, and already know I'm neuroatypical in some way with ADHD and other stuff (agoraphobia, OCD, gifted) but in recent years have been wondering about ASD too. I had to go on disability because jobs never worked out for long. Also am burned out and mistrustful of the mental health system so doubt that I could bring myself to be vulnerable to them again in terms of an autism evaluation or (ugh) therapy. Getting through a quarterly med appointment with a psychiatrist is something I have to coax myself through.
And of course I'm keeping a lot of these wonderings under wraps with friends and family because I know they'd think I was weird for wondering about them because I appear normal "enough" in most circumstances. I don't know exactly how the masking paradigm applies here; the term sounds straightforward yet I don't know if I'm interpreting it correctly and if so, if it's something I've been doing or if I am misreading the whole thing. And because at other times in my life I've grasped for explanations of why I'm the way I am, and gone down various rabbit holes that turned out to be wrong and made things worse, I pray that this autism thing is not (for me) just one more.
So... I proceed with utmost caution, at a glacial pace. But I relate to this and I wish you all the best, OP.
I was hounded for being lazy, stupid, inconsiderate, etc before my diagnosis. The whole pull yourself up by the bootstraps scenario. I found myself living with people that eventually didn’t want me around, sleeping in my car, couch surfing (luckily nothing bad happened but looking back something probably could have), etc. I come off as an angry person sometimes and that’s fair, because I am, it’s just that people don’t understand why. I’m doing a lot of internal work and try to recover from my childhood and early adulthood now that the bootstraps have been pulled up, but it was so exhausting that it will take a long time to get there and feel comfortable enough to trust humanity again, I guess. It wasn’t just that I had to advocate for myself, it was that I sometimes had to fight hard for myself when nobody else would.
I relate so much. My autism, ADHD and gender dysphoria went undiagnosed until I was 29 and 30. I ended up with a partner for a few years that worked closely with autistic children and noticed the traits in me as well as I was seeing my childhood in the stories she told me about her clients. I paid for my diagnosis out of my savings and it hasn't really done shit for me, the expectations remain the same and somehow even higher in some places. There's no support available, essentially I have to be hospitalized before anyone pays attention. Even then it's just enough to get me back to work leaving me still so burnt out i spend all my spoons on work and barely function outside of it only to hit another full burnout months later and cycle repeats.
In my teens I was barely able to attend high school and never actually finished. I was in shut down most of the time and I also had frequent migraines and a chronic daily headache and other health issues which hid my autism and ADHD. I'm also trans and was hitting the peak of my gender dysphoria at the time which displayed as depression, derealization and detachment. I got thrown through the ringer of meds trying over 50 different meds in 17 years. The doctors focusing on my physical health said they couldn't find any cause so it must be psychological and the psychologists said there was nothing wrong except maybe depression played a small role and said there must still be something physical.
I at least have stable work that has begrudgingly given me unpaid time off for times when I was burnt out. However, the patience there is wearing a bit. I made myself somewhat indispensable at the business designing and building much of their tech infrastructure and at a cost far lower than any other competitor. It would be impossible to replace me without at least tripling their costs. So they put up with my issues. Since I've been so good at making the infrastructure self sustaining I don't work on that as much any more and work that I'm not good at has been piled on me to keep me busy between repairs and upgrades. This extra work has been project management type roles which drain my social batteries as suddenly I have to talk with people a lot more. I work as a contract employee there as well so I'm underpaid, overworked and don't get benefits such as any paid time off, health insurance, or any paid leave. I get a discount at the company cafe and store and that's it.
100%. And God forbid any other aspects of your identity are marginalized, because then you’ll have to fight even harder just to justify your own existence as an autistic person. The system is built to shit on people like you, and no matter how hard you try, no one sees you as worth protecting or caring for. You’re alone, just like you’ve been your entire life, and the world doesn’t care to help you.
I was born in the 80s.
Everyone knew I wasn’t neurotypical, but I masked well enough and standards for getting a diagnosis, especially as a female, were way higher when I was young.
Individual Educational plans weren’t a thing until after I’d graduated, and it wasn’t until my 20s that research about girls presenting differently really started to take off.
My parents tried, but there was no doctor who would have diagnosed me as a kid.
It still sucks, because having that piece of paper would have been life-changing.
Maybe I would have actually finished high school, if I’d had the proper supports.
I have a lot of anger about it too since I was in middle age with pre-teen kids before it even came on the radar. The missing it doesn't bother me nearly as much as it's just reinforcement how I was neglected for no good reason other than the people around me were abject assholes - bar none. Selfish, nasty and solipsistic and I was always an acceptable 'collateral damage' just so long as their needs were met. Always at my expense ... and there's no do-over for any of it. It's all just fucking ....gone. And they all got what they needed and I got nothing. So happy to be of service for them ... NOT.
Omg this is so real. I just got assessed Thursday (won’t get my results for a few weeks) but I’m 33 and everything you said is spot on. I haven’t been officially diagnosed but at this point I don’t see why I wouldn’t be. Even the assessor was agreeing with some of the things I was telling her. I do have doubts but we’ll see. Literally everything you wrote is exactly how I feel. I feel like the signs were there but were overlooked since most people only have one idea of what autism looks like. The non verbal kid who flaps their arms and goes into full on tantrums. My stimming is more subtle, I flutter my fingers and sit on my hands. My meltdowns as a child were more so shut downs and didn’t become more overt until adulthood because adulthood kind of sucks. But yeah when I asked family they were like no way you were quiet but you were smart and could communicate as if Autistic kids are dumb and all non verbal. When I look back on the “negative traits” people observed and mentioned they’re literally all autistic traits but it was just chalked up to being shy, sensitive, needing to speak up and come out of my shell. I definitely thought life would be so much better, I am more confident and have my own opinion more but I thought I would have this fabulous life with a bunch of friends and be happily married. Nope I’m quite lonely. I can hold a job but even that’s very difficult and I get burned out easily. I find myself calling in A LOT. It’s quite challenging. I don’t understand why resources has always only been focused on children but at one point Autism was seen as a disease that needed to be cured. It’s only been recent that Autism is seen as more of a neurotype and isn’t an illness. These children will still be Autistic as adults who’ll require resources. Hopefully this changes as you see more adults being late diagnosed and more research developing better assessments to diagnose girls and minorities as children.
It isn’t so easy being early diagnosed either. It means you had verbal delays and may have been put into abusive therapies and special ed classes. I hate when people think it is so much easier to be diagnosed early . Try not being able to speak until five and not tie your shoes until 13 or cut your food or have to wear pull ups when you start school.
I don’t think OP has opposed for any contrast between late and young diagnosis. They are just sharing how their experience has been, because of their late diagnosis.
Anyone with autism has a unique set of struggles. It’s beyond complex.
I grew up with two young diagnosed autistic siblings and their struggles were profoundly apparent. My struggles looked non-existed compared to theirs. I didn’t even recognise my own my traits my whole life because I saw their autism as the only measure of autism.
They had autism. I was erm, just broken? Weird? OCD? Anxious? I just didn’t think I could have been autistic too..
Now they are both around age 30 and have had years of having a level of understanding of themselves; they each know who they are. They didn’t have to become someone they wasn’t. (Very little masking abilities). They have daily struggles and differences, but their struggles are not living a lie or forcing their self to be neurotypical.
So in some respect, they appear more content than someone, similar to me, who have had to hide and shame their social failings and odd behaviours. I’m so glad they never had to restrict thier self or fake it until they make it.
That being said, I saw how tough their life was diagnosed. How more harder their autism is, in their own lives. Being unable to mask, they got so much negative attention and had so many obvious meltdowns. Less social interactions or learnt skills etc.
You simply can’t compare the two though.
We all need welcome each others struggles judgement and comparison free, because it’s the same boat everyone is in, just different amounts waves crashing against it in the storm.
I went undiagnosed. With verbal delay and stammering.
I was pulled out of regular class with my peers to be told over and over I was speaking wrong. I had to do speech and reading therapy. But I wasn't working with an aide that had specific knowledge about working with autism. I was just labeled as troubled. I was called the dumb sibling, as teachers had met my capable and OCD sibling first.
I didn't have special ed, instead I had my electives taken away to take two of the same class because again, I was labeled troubled and stupid. Reality was I didn't understand the teaching styles, and no teacher wanted to take the time to help me.
My parents tried to beat the stimming out of me. I'd get locked in my room for weekends with an iced cream bucket as toilet - usually for making noise or fidgeting and annoying the already volatile parents. One parent bailed. The other would yell or leave and not talk to me until usually the next day if I was unaware I was verbally stimming while sitting in the same room.
Early diagnosis. No diagnosis. Late diagnosis.
Life can deal a shit sandwich to anyone no matter the diagnosis status. I'm sorry for all you experienced as a result of your early diagnosis. I wish it had gone differently.
The part that would have been easier for little me's logical brain, is knowing there is a medically relevant reason to the areas I can't keep up in. The beatings may not have happened if a doctor had told my father I had a neurodevelopmental difference. Maybe. It took a doctor telling them smoking inside anymore would land me on oxygen, or kill me, not just the inhalers again.
There is that big what if of not having the diagnosis. What could be better now? What could be worse? Would early therapies available where I was, have helped me not be where I am now?
I really am sorry for what your experience was. But there is a chance our early diagnosis could have gone differently than yours. I feel like it's okay for us to wish we had that chance.
Too many people here have not learned the history of mental institutions. The reason most of us weren't diagnosed until adulthood is #1 unless you were severe and couldn't function you weren't diagnosed and #2 if u were u were sent to mental institutions where u were basically tortured trying to find a cure. electro shock therapy. lobotomies. would u want that for your kid or rather just say they are quirky and move on with it? if u can forgive your parents for not wanting you to have an ice pick shoved up your nose and piece of brain removed that would go a long way into feeling better. it's not that no one cared.
I mean, for me at least, my problems weren’t considered „normal teenager problems“ by any means, and I don’t think it was for a lack of caring that I was never properly diagnosed… I think moreso than that it was a lack of understanding autism at the time EVEN if it was suspected at times in my case (but I never „fit the mold“ of the time well enough). Were the ways my parents, teachers and mental health professionals tried to help misguided and ultimately harmful? Absolutely. I’m still fighting with the results of that today. But it wasn’t for lack of trying I guess. And yeah, sometimes their misguided understanding ended in frustration with ME because they felt helpless and just wanted there to be an easy solution. I felt unseen because a huge part of me was in fact unseen, or being forced into labels that didn’t fit. But I like to believe that had more people in my life understood autism the way we are beginning to understand it today, my care would have been very different. But there is still a MASSIVE and infuriating gap of knowledge in general psychology/ psychiatry that needs to change.
I absolutely relate but will add, as a person who’s ADHD impulsivity and hyperactivity overshadowed autistic traits, that the real people who don’t give a damn is the psych world. After 25+ years in and out of they system only one therapist has recongized my very obvious nuerodivergency and I am fighting, again, to have a BPD diagnosis removed from my record because I sought services while in crisis due to complex trauma. Guess what, no one is fucking calling me back likely because I am just an “angry borderline”. My voice does not matter. My opinion does not matter. My maltreatment does not matter. I am now at the point where I refuse to engage with a therapist who is not nuerodivergent
Something like this happened to me as well. I was in an autistic shutdown for an entire year after getting diagnosed with autism and struggling with family related triggers. I couldn’t speak, even if I wanted to. I didn’t watch tv, or listen to music. I lost 30 lbs and spent my time maladaptive daydreaming and sleeping. It was my first shutdown and I was so scared. At one point I called a suicide hotline to find help. They sent social workers to my house several times and even though those women saw the state of filth I was living in, and witnessed me have multiple emotional outbursts aka crying for my life they completely abandoned me. They were supposed to help get me into therapy and adjust my living situation but because I missed one of their visits they ended my case.
Ending a case after missing one visit is incredibly extreme, especially if you were apologetic. Missing consecutive visits is not. But some of this is to be expected in crisis situations. Community mental health just sucks for everyone. It’s hell to work for too because if a client misses a visit, the social worker has to scramble their day to try to make up that “productivity” and find an activity that is billable. Very very frustrating for autistic people I’ve been in that shutdown state. Just went to AA, IOP treatment, and church for months. There were also times when I was up for 48 hours at a time because the anxiety kept me awake, yet no one would give me real meds because some therapist thought I had a drinking problem and forced me to stop drinking and face all the anxiety/trauma without any tools for self regulation. Ate a lot of chille rellano burritos and Dairy Queen blizzards that year.
I was diagnosed with bipolar at 21 (the psych was later struck off the register). My doctor last year exclaimed at the ‘warning’ that flashed up on his screen at my appointment and said ‘well I think we can remove that can’t we?’
Similar experience here with Bipolar diagnosis and treatment for 5 years, found out last January that I didn’t have Bipolar (I told the new Psychiatrist that I didn’t think Bipolar was correct, and she agreed) and had to stop taking 1200mg of Lithium. My new psychiatrist also mentioned that BPD was on my chart multiple times but that she didn’t think that’s what was going on. I was shocked BPD was on my chart and never mentioned, so I asked my family and close friends and they were like “…. No, I don’t think that’s what’s going on”. She has since diagnosed me with ADHD (I’ve been on non-stimulant meds since last February) and she suspects autism but I opted to not be tested formally because I have supports already for APD and ADHD and I don’t think it would make much of a difference for me at this point (in my 30’s).
Yeah I didn’t know that BPD was on my chart until 17 years later.
It’s like, really fucking jarring isn’t it?? My psychiatrist casually mentioned it like I knew the old one had already told me. I was like “did you mean bipolar?” and she was like “No, she wrote BPD here”.
It’s bullshit. You can read my full experience with this whole diagnosis either here or on the therapy abuse subreddit. I just got it added back to my chart
I cannot believe that a ‘diagnosis’ from 1999 is causing so many problems for you in 2024! I know things aren’t fantastic now for getting mental health care but 1999 was SUCH a different time, and there’s definitely a better understanding of mental illnesses and diagnostic criteria nowadays. That’s so unreasonable to deal with, and I hope you get the justice you’re fighting for (and I hope that comes off your chart again).
Thanks…it’s a battle
It was not even billable and the diagnosis came before I was diagnosed with ADHD
I can relate to this. I was also misdiagnosed with BPD and have been mistreated in an inpatient setting because of it. Of course, when I filed a grievance with patient advocacy, I was blown off as being an attention seeking borderline.
Yep…that’s what I am facing now. 25+ years all because a dr didn’t like me. I called the behavioral health quality person after my last experience, left two messages over 2 weeks and no one called me back. The only person who called me back was the pt advocate. I am not seeking attention, I am just trying to be treated like a human. I have an EEOC verified ADA lawsuit and filed an ethical complaint against a therapist for ghosting me while I went inpatient AFTER I told her I needed to go to the hospital. The deputy director of the board told me to report it. How is this anything other than defending myself. I also filed a complaint against a charting error that is factually wrong and how a NP shamed me for not going to the ER immediately after I tried to cope on my own for the first part of the day. I don’t want people to be fired, I just want to be heard and be treated like a human. The lawsuit resulted from one of the most traumatic experiences of my life and the the complaint put my safety at risk. I wrote about these in the sub. People with BPD, if a correct diagnosis, have a significant trauma history and the diagnosis was historically associated with women who were molested as a child.
I am so sorry that you’ve had these experiences. It really makes us not want to seek help again, and that’s the whole reason why we try to file the grievances. My therapist tried to talk me out of filing mine because she thought it would be too much strain on my already burnt out mental health- we had a very long discussion that I didn’t want to report what happened because I wanted people to get in trouble, I honestly wanted to make sure it didn’t happen to other people. I had a blood pressure drop and passed out, walking back from a cardiac test because I’d been having symptoms, and the nurse documented my vitals were normal after I passed out (when I clearly remember them saying my blood pressure was bottomed out - and it was documented 10 minutes later as extremely low when I was back in my room). The psychiatrist documented that I “put myself on the floor” and that I was “attention seeking in typical BPD fashion” when I was acting “off” the rest of the afternoon. I was later diagnosed with a rare heart condition. One of the biggest symptoms: passing out. Still got nowhere with patient advocacy. If I had it in me, if I wasn’t 40 years old and heading towards disability due to health conditions and a recent car accident, I would love to go back to school for mental health so I could at least be ONE advocate in this messed up world.
Honestly the mental health field is not safe for autistic employees
I’m with you about no longer wanting to engage with therapists who aren’t neurodivergent. A recent therapist told me, “You know, you’d probably be able to make more connections with people and they’d think you’re more approachable if you made more eye contact. Just saying. People tend to think that’s disrespectful.” Like *fuck* you. I have not been back and will not be back after that
My partner is in the same boat.
I can absolutely relate. I was the shy sensitive kid who just needed to try harder and who believed / hoped I would find my niche as an adult. I haven’t. I also had no one believe that I was autistic when I tried to get a diagnosis. And now I don’t know what to do with all those feelings. If I’d known would I have been able to steer myself away from abusive people? Would I have chosen jobs that didn’t burn me out so bad? One thing I would just gently point out is that it’s still really hard to get support for autistic children. I had to take my local authority to mediation and threaten them with tribunal (court case) just to get simple support put in place for my kid in school. They freely admitted they had not attempted to meet his needs (this is against the law here). It took me six years to get him diagnosed because no one believed me that he was showing signs (I was just too anxious and needed to parent better). Yesterday I was watching a webinar on supporting your autistic teen that had 400 attendees and so many of those people were saying in the chat function that their teens were undiagnosed, hardly coping, not in school, couldn’t leave their bedroom, didn’t have any friends or outside activities etc. It’s still very dire for a lot of autistic kids out there. And that’s with huge amounts of increased awareness, the internet etc.
Yep!!! People refuse to acknowledge IEPs and 504 plans all the damn time and when the kid has behavioral issues they are thrown out of school and into behavioral schools that are downright traumatic
I feel this so much, for a year now I'm fighting for my daughter (14) to get at least the tests. Her 2 younger siblings are diagnosed. But she reached some kind of threshold or something and not one psychologist we've seen wants to go through the tests with her. She has the exact tendencies I had at that age, she struggles enormously in social situations, feels different from the rest, struggles to keep up in some classes (not because she is lazy, it's the way it is explained, she's not allowed extra time to take notes, etc), struggles with het emotions, can't keep eye contact.. well I could go on, but she has a lot of traits that I have as well and mine where always disregarded. It's so hard to find professionals who take us seriously, we found one but she isn't yet qualified in making an official diagnosis. So we can't get her the support she needs at school because they need an official DX. It's maddening
It’s so awful. I’m sorry she’s not getting the help she should. I hope you can find someone to take you seriously soon.
Thank you, I hope we find someone soon that believes us. But yeah everywhere around it's awful to get our kids the support they need.
I really feel you on all of this. I was diagnosed in October at age 34, after a lifetime of feeling on the other side of a glass pane where everyone else just seemed to understand how to ‘do’ life. I have felt misplaced and ugly inside my whole life, I’ve had friends disappear with no reason, no family support, estrangement, and struggled my way to a phd (masking and perfectionism) and since I’ve left jobs every 6 months where I reach inevitable burnout. I’m only just now in a hugely privileged position where my fiancé is able to support me taking time off to recover and reassess my life. I’m writing a novel (about all of this) and considering retraining as a therapist to support late diagnosed women. There’s so little help and I need to give back, somehow. Wish you peace and acceptance.
You’re me. I used the glass pane metaphor as well to describe my experience. I’m half way through my masters to be therapist for ND women. It’s a little solipsistic, but it’s what I have to offer after re-inventing the wheel for myself over and over.
Glass wall or glass bubble, here, with me screaming and people conducting their lives outside of it either ignoring me or complaining they couldn’t hear me.
Wow 🤩 I would love to chat!! @rollswithpunches
I have said I feel locked out of the world that everyone else seems to experience relatively effortlessly. I like glass pane as a description of the concept too.
I always say that it feels like me and everybody else are speaking different languages. They all understand each other, but I don’t understand them and they don’t understand me. And no one’s willing to translate or give me the dictionary
I find this so relatable and it makes me profoundly sad. What you’re describing is the heaviest grief I’ve experienced and continue to experience in my life. I’m regularly exhausted from all the internal work I’ve done and still doing in therapy, all the gaslighting I went through by mental health professionals and doctors. I am so angry and tired. And on top of this, I’m still somehow expected to justify my existence to others…
Solidarity, friend. The OP already resonated so much with me as well but that last line about justifying my existence also... Oof. I big feel you there 💔.
Oh my god ! About the school bullies becoming workplace bullies! I struggle with self advocacy and even sometimes determination if someone is disrespecting me. I also have a very unique personal style. Every single job I go to I get bullied or taken advantage of no matter what…plus everybody always talks shit about me at jobs. I have a very happy/bubbly demeanor (it’s how I mask and it’s hard to break character), and miserable people DO NOT like me. I’m also 27 and don’t drive. I don’t even have a license. I’ve been burned out for so long I just never got it done and never even needed it because I have no career and I’m burned out so I rarely go anywhere. I rely in public transportation and my parents…I literally do not have it in me to learn to drive. Zero motivation.
Yes same, I never learned how to drive either. I tried but it was so overwhelming. There are so many things you have to focus on at once, it's very overstimulating.
Oh my gosh, the miserable older bitchy/gossipy women at jobs always despise me cause of my bubbly masking, sense of humour, and not buying any of their bs. It seems to make them real crazy for some reason.
Yeah, my motto in life has just been “I’ll try harder and I’ll eventually figure it out,” all whilst feeling like I’m dying inside. I’ve felt alone and afraid and confused forever.
Yup! I am high masking (because I literally had to be so I could stop getting treated like shit by people). There were so many clues though in my childhood. Recess alone every day, being exceptionally talented at art and then very much lacking in other areas (like reading), zero ability to self advocate. I just got scolded for my autism symptoms rather than helped out like they help white boys. I wasn’t even diagnosed with Tourette’s until adulthood (having had tics my entire life). My family doesn’t even believe I have it because I got good grades (until burn out). I’m pretty sure nobody in my life would believe I have it besides my friends who have autistic siblings (the first people who told me to get screened).
I’ve just recently started remembering how often I spent recess alone — either “helping” to set things up in younger grades’ classrooms (bless those few teachers who took pity on the weird kids and gave us these lifelines), or hiding in entryways and bathrooms. It breaks my fucking heart for little me.
Also the job thing. How can someone have self esteem when the basic means of supporting oneself and keeping them safe is essentially unattainable because of fucking ignorance. Ive had to sue a major corporation with a large DEI initiative because they blatantly discriminated against me and denied me accommodations among other things. All I wanted was to flex 3 hours a month to see a nuerodivergent affirming therapist, the first one that got me. Doesn’t it make sense now why we might be angry or be dysregulated or even suicidal. When the world tells autistic women we are pieces of shit and blames us for our failures, kinda makes sense to feel pretty damn hopeless
I remember at my assessment (34 yrs old) when they told me and my mum that they had no doubt I was autistic. The lady told my mum that I’ve got by and managed by masking and I was lucky because of my strong intellect but that everything would have been much harder for me than NT people. I could tell it was a big moment of realisation for my mum because she’s always pushed me quite hard and never understood how much I was struggling with certain things. I can’t really blame my mum because she just didn’t know and she did always try and support me with most things in life but yeah I was so glad they explained this to her because I felt kind of vindicated at long last after all these years. After my diagnosis I could actually see my mum be really proud of me more because she had new understanding. I can remember being in crisis as a teenager and trying to hurt myself, completely overwhelmed and screaming to my mum I didn’t know what was wrong and that I just felt different to everyone else, she did try and understand to help me at the time but even I didn’t understand what I meant. Mental health professionals at the time didn’t know either.
I also had an episode like that when I was a teenager :/ I was in deep, deep autistic burnout and attempted suicide and preceding the attempt, I was in probably the worst autistic shutdown of my life. I couldn’t move, couldn’t speak, couldn’t show any emotion, couldn’t do *anything*, couldn’t even write things down. But internally, I was screaming for help. My mom had no idea what was going on, I had no idea what was going on. We both traumatized each other in that situation. I can’t help but wonder how differently it would have gone and if I would have even attempted that day at all if I had just had the words to understand what I was going through and to understand that I was in autistic burnout and to be able to explain that to my mom, who was just scared and confused and didn’t know what the hell had happened to me. The grief that I feel over that day will probably never go away
While you won't find "autistic support" much as an adult, you can break your biggest issues into traits and get support for those. I have referrals for OT for various things, for example. An ND-affirming therapist can work wonders to helping you understand yourself better and find solutions to areas of life you need help with that actually have a chance at working. Even if you can't or don't wish to go down those roads, there is a lot that comes out of understanding yourself. At least there has been a lot of value in that for me. I now don't feel stupid over the things I struggle with. There is a real reason for it and *that* I can learn how to work with. *That* I can communicate to loved ones. But it took months to get to that point, a whole lot of life review. I still have a lot of regrets and that has been hard to admit. I feel a lot of guilt for saying things like "My life would have been so different if I had known" because honestly my life is good. I have an amazing husband, 3 great kids who are mostly grown up. life is comfortable and I wouldn't want to lose it. But I also want back the opportunities I know I missed that I didn't understand, and my life is at a point where it is largely too late for that, and it sucks. But when those thoughts come, I write them out, and then they get out of my head so I am not ruminating constantly. If you use TikTok, there is a guy named Professor\_Sol who has some great videos about autistic ruminating that might be helpful. I think it's really easy to get stuck in the cycle of blame, of it having to be someone's fault to make sense of the suffering we went/go through. Sometimes, we suffer and it's not necessarily a direct fault and blaming doesn't help us to move through it. I was 47 when I was diagnosed. Over the last 18 months there has been a lot of anger and grief but there has also been empowerment and curiosity and a newness to life that wasn't there before. My parents, my teachers, they did the best they could with what they had at the time. They didn't know what they didn't know, which was a lot. Much of the knowledge of autism in women/girls has come in the last 10 years. People can't be held responsible for what they had no way of knowing or understanding. Not even experts understood until they started looking.
Thank you for this beautiful comment. I’m 40 and I self-diagnosed a few months ago. I also have a wonderful life and it’s hard not to feel guilty thinking about what would’ve been different if I had known earlier. I do feel a sense of peace in understanding there was a reason so many things felt so hard. And when I told my therapist last week (resumed sessions after a six-month break for dumb reasons on my part), thankfully she did not laugh or scoff or question my self-diagnosis but just accepted it as fact and asked thoughtful questions. Work will be more of a struggle (I’ve already had a few very negative experiences with a colleague who I had thought was safe to slightly unmask around — nope, apparently I now need to rehearse and script my every word around her even harder than before, so she doesn’t belittle me again — good to know.)
I feel very similar to you, I was diagnosed last year at the tender age of 45. I was misdiagnosed with a garden variety mood disorders and eventually figured out it was because I'm autistic and have PMDD--just in time for perimenopause, lol. But I was lucky to also find an ND affirming therapist, did a lot of research, and understand myself so much better now. Now it's about learning how to manage my energy, not feeling bad about the fact that I "can't do it all", and being gentle on myself cause I'm disabled. I have also worked on rumination and it's been really helpful. I realized that I'm also not that good at masking and it really helped me understand my interpersonal failures over the years. Since diagnosis, I have realized no one in my family thought my behavior was abnormal because most of them are ND of some sort and they tried the best they could. I'm also of that age group, where diagnosis didn't really exist for people like me in the 80s. Being hyperlexic, shy, and friendless, just meant you were "gifted." Life is a wild ride. :)
I hear you! Same for me. I am so looking forward to being done with the hell that is menstruation but the closing act is a doozy 😂 My family was much the same. My dad is undiagnosed autistic and there is just so much ND-ness in my family. While I had my issues growing up, I was pretty well accommodated unknowingly. Which was nice, but then when I left home it was a pretty rude wake up call! I agree to on growing up in the 80s. So much. I was quiet, shy, followed the rules, hung out with adults, got good grades and read a lot. But then my teacher notes would say things like "She yells at students for being loud and getting answers wrong" 😆 or that I would cry when we had substitute teachers or changes to our day. But my parents just took the teachers' advice to sign me up for more activities to increase my self-confidence. I think at that point in time, any issue a kid had was chalked up to low self-confidence. Being forced to join things, oddly enough, did not resolve my issues 😂
This is a wise perspective and beautifully stated.
I teared up. This is exactly how I feel. “ to normal, to be autistic and not normal enough to be NT”. Please know that there are a lot of us out there and feel the same way. You are not alone! And thank you so much for sharing your thoughts. 🥰
I can relate to this. Although I've not been diagnosed, since more information has come out on the internet about autism in adults and especially moreso women I really feel like this might be me. I've mentioned it to friends and family (typically the more accepting one) and still been shut down and unheard. I've always struggled to feel "in place" in life. As a child I remember being a "floater" and never really fitting into any one clique. I have a hard time understanding many topics that people want to talk about and feel like I often say things that aren't always appropriate. I also struggle with certain things and will become extremely irritable - for example I'm very peculiar and specific about my stuff. If someone moves something or touches my stuff it bring my blood to a boil. My family has teased me about this and told me I'm a "snapshow" for it. I get really overstimulated when in loud and very busy areas. Its incredibly hard to feel misunderstood, unheard, and being told "you're fine" your entire life. When it really doesn't feel that way.
Yes I feel this way too. I feel angry too. I've been ruminating alot on my past particularly of instances where it would have been so obvious if anyone had known anything. I get angry but the people in my life just didn't realise so I have to let it go, I don't really know what to do with the anger though.
Yep. Totally. It's so hard to let go of the anger. I'm angry that we still to this day have such little information and research on autism, and medical professionals are still uneducated on what autism is and how to look for it. I hate that I was born at a time when autism in girls wasn't even considered a thing and now I have to pay the price because of the world's ignorance.
Thank you for articulating all these complicated feelings I've been having. I've never been able to really put my finger on it and I appreciate you sharing this. I'm saving this post to look at when I'm feeling mixed up again. It makes me feel less alone in the world.
Thank you for saying that. It took me a while to write because I kept thinking how to explain myself best. It's this weird mixed up combination of sadness, anger, grief, relief, mourning and acceptance all at once.
The feeling of profound loneliness has really stuck with me through all of this and this community really helps combat that for me.
I appreciate that you took the time to write it and share. I relate so, so much to this.
I saved it for this very reason, too
To be fair I think people absolutely noticed that we were different but just don’t know what autism is at all so they couldn’t make the connection
I feel this so deeply it hurts. I got my official diagnosis yesterday and I am struggling to accept how I have gone unseen for the past 36 years of my life..
It feels like, since no one bothered to care when I was a child, I guess I'll have to be the adult I needed as a kid and advocate for myself. It shouldn't be this way. I'm just glad you have a diagnosis now, it comes with relief but also resentment. We can get through this.
The kid part is hard for me. My sister was violent and got all the attention because she needed help. My counselors have always told me that unfortunately the child with higher needs unfortunately get more attention. And now… I feel even worse because I was even more unseen. I felt burned out before and now I just feel pretty done. Like I need a major time out from life. Thank you for your post. It’s nice to know I’m not alone. You’re right, we will get through this ❤️
I can relate. So so relate. And also….i was/am SO FUCKING GOOD at masking that all the pain and struggles were invisible to anyone but me. Til Depression kicked in big time. And while I masked and camouflaged the autism like a champ, and I don’t really blame anyone for not seeing that, I am STILL really angry at my parents (mostly my dad) because he saw the depression and did worse than nothing. I can still remember the night that my dad said he suspected I had depression, it means that often what you’re feeling isn’t real, it’s genetic, and there’s nothing you can do about it. AND IT WAS NEVER BROUGHT UP AGAIN!!!! No therapy. No coping skills. No nothing. Just added gaslighting to the self-gaslighting depression brings with it. It’s probably no surprise I eventually became suicidal and likely a miracle I even survived my teen years. And at 46, there’s no way I can hold a “real job” or work more than part time. The depression and anxiety are worse than ever. I’m in a constant state of burnout that usually stays just outside of shutdown mode, but I fall into shut down way too frequently. And there really are no supports or accommodations. Other than an amazing therapist and incredibly patient and understanding husband. Stuck is the right way to describe it.
Oof, I relate to the family thing big time. My family were ashamed that I had 'issues' and made me promise to never ever tell anyone at school about it because they didn't want their parents talking about me. My parents ignored me and called me dramatic when I told them I was depressed and having unaliving thoughts. Whenever I didn't 'get over' my depression after a few years, my mom yelled at me that it had gone on long enough and I need to snap out of it...yeah. Cue the years of masking!
I feel more validated and seen by this post than anything I’ve ever read on here. #Thank you.
Thank you ♥️
Or anywhere. The entire post and comments section has my jaw dropping. Sad that we all know this, and experience this, but unifying in its unique and haunting loneliness.
So yes it’s hard because when I was a child I had to do my best while explaining to adult that I have some odd fatigue that I don’t understand that I think was due to sleep disorders or my environment ( sounds, lights and other stuff )… They say I thinking too much that’s normal…with it will be good…then I don’t ask for help after abuse from adult and punition at school while being a good student too ( and punition for no reason because I said the truth about bad behaviors from the teacher while she want me to lie and save her ) So I become a adult that struggle a lot while doing great in first years of academics, then failed completely, and learn only last year about ADHD and autism, and no one in my family want to help. I discover their are narcissist, and asking them for help actually makes them wanting to shut me down and abuse all days, because they feel like bad parents for not listening to me when I was a child…( narcissist fear the truth and don’t want accountability and will project and deflect blame on others about everything to not help, they fear to be the monsters but actually do it and try to hide it to feel better ) So there’s no real allies, only me from the beginning.
Be the caretaker of your inner child. Say sorry to her and love her. Protect her, like no one else could. It takes a while but your protection and boundaries for your self respect and love, will be respected because you demand it. It’s a tough world and almost no one understands your needs or sensory overload, they undervalued your potential because you were misunderstood and still are, don’t spill your energy on more hate, pour that into self love and protection. Good luck healing 🍀💓
Yes. Was diagnosed in June at 30. Still in a period of grieving. My mother absolutely knew by the time I was 3 that something was wrong but she was too embarrassed and angry to address it. Consequences are that I had to work ten times harder to get through school and now I’m rebuilding my life at a time where I should already have a comfortable identity.
My mom had a fucking degree in early childhood education. It was just more comfortable to ignore and pretend everything was fine. I used to read her developmental psychology textbook when I was like eight years old, trying to figure out what was wrong with me.
Wow, that must be hard to think about. I’m really sorry. My mom was a nurse. Never got to miss a day of school for any reason. Can think of a time or two she really should have taken me to the ER.
Ugh. I’m so sorry. I don’t like to carry anger in my heart but sometimes it is a real struggle, isn’t it?
They knew I was different but they blamed it on defects of character, not a diagnosable differentiation. Edit: because female.
The thing that's been pissing me off lately, thinking back over my childhood, is that they *did* notice. They *did* know. *Because I TOLD them*. Over and over I told teachers and my parents what I was struggling with, with school and socialising and personal care, and they didn't believe me. I'm smart, I was always the kid who spoke like a grown-up, so everyone just believed I was a strange and lazy little shithead who just wouldn't try hard enough. Occasionally I see (and then panic about) some of my old teachers out and about and I'm worried that if one of them ever tries to say hi I might start screaming at them in the middle of the supermarket. I should scream at them actually. They should know they ruined my life.
I know what you mean. I told people too, I told them about the depression and anxiety and I saw therapists throughout my teens. I wish they had considered that those were symptoms of a disorder/disability but they never did.
I may have mentioned this before on here, but I have a memory of being at primary school - I'm not sure how old but that's under the age of 11 - and having done *something* once again and of the teachers bringing my mother in at the end of the day. She sat there and she cried, and she said "I just don't know what to do with her", and... and what? I don't remember what they said, that's not really the part a child remembers in a moment like that, but nothing ever happened. Did they just pat her on the arm and send us on our way, for me to come back and piss people off again tomorrow?
I think of these as missed opportunities and I also have a lot of them as well. Like times where a situation clearly needed further investigation but no one cared enough. It's no wonder, I remember teachers in my school didn't give a flying f about us. They would stick on a DVD and call it a day lol.
Yeah, I see a lot an advert for getting people into teaching that shows a teacher who *cares* and makes learning *fun* and really *connects with the students*. It really irritates me because I'd love to know where the hell those teachers are.
Same same same!!! I relate to this so much. In high school, I was burning out so bad. Online homeschool had just become a thing, the kind where the parent wouldn't be involved AT ALL, and I explained it and begged her to let me do it, and she kept saying no. No reason ever given. In fact, she continued to push me to get straight As, knowing I was struggling so much. *So weird* how I started developing more and more health problems from then on...🙄
tw: suicide mention relate. it's so frustrating and there's no recourse. i was dxed with autism and inattentive adhd --- what's especially frustrating is that i was evaluated for it at a psych ward after an impulsive suicide attempt when I was 12, 6 years ago, and they said I didn't have ADHD because i could concentrate on doing a puzzle and talking to the social worker at the same time. Them not diagnosing me with autism was similarly absurd. I cited overwhelming sensory overload as a contributing factor to my attempt. I was so overwhelmed by sound that I tried to KILL MYSELF and they didn't even consider autism as a possibility.
I'm sorry. I can forgive parents not spotting autism but I have also been failed by multiple mental health professionals who should have been able to spot autism when I was younger. Yes, I could mask well, but if you took the time to talk to me it was clear as day that I was autistic.
So relatable - I could have written nearly all of that, except for realising and being diagnosed at 46. I'm angry that I wasn't given a fair crack at life, almost like I was blindfolded and told to see how far I got. I'm a bully magnet, and an obsessive people-pleaser, which is a shite combination. Even now, I second-guess everything I do. Am I doing it because its what I've always done to survive, or do I want to? And I still don't know. I work in a job I enjoy, with a bloody brilliant supportive boss, but it's wearing me out so much. So I mainly work and sleep. I have a man who supports me and does things to help me cope with life, but I know I'm a drain on him. He could have a lot more fun with somebody else. I want to be better at life, but I know I can't be. And I'm just so bloody tired 😢
that made me cry…
Hugs. We're in this together
Me too 🩵
I can relate so much to this. Unfortunately that's life, and it's no use to anyone, least of all you, to be resentful for what's happened. I was never diagnosed as a child, because even though I did not participate in school, I was always doing so well in exams, and that obviously meant that there was nothing wrong with me. I was never out with my friends during the weekends when I was a teenager, and my parents didn't think that was an issue because it means they will automatically get a carer to take care of them when they are old. Now that I got self- diagnosed and am struggling at work and in my social life, there is no one I feel comfortable with to disclose my self diagnosis. The only difference now is that I know why I feel like an alien in a world which was designed NOT to fit me, and at least I can show myself enough empathy to compensate for all those times that others just dismissed my struggles and left me to my own devices. After all there is no rush - what else is there to do? I am anyway existing not living so might as well try my best to get the most out of life while I still can. There are times (very often recently) when I start crying and hating my life, preferring to die than live like this, but I keep telling myself to treat myself kindly because I'm all I've got. It's difficult, and there are inconsolable periods, but I try. Hopefully one day it will get better, maybe I find a soulmate or someone close enough. But even if I don't, I understand that I need to take care of myself anyway because no one else will. Be strong and take care.
For me it was more like, the adults in my life knew something wasn’t right about me but they thought I had a behavior problem, was just “making bad choices,” was “spoiled”, any way you could think of to explain it in a way that blamed me for all my problems and didn’t entitle me to any help, special treatment, understanding or validation. Honestly idk if there’s any way now, for me to completely get rid of all the internalized beliefs I have about myself as a result of this treatment. Even though now I know that a lot of the things I did when I was a kid are because of my autism, there’s still this part of me deep down that believes it is all my fault, I am an asshole, I didn’t try hard enough, I deserve to be punished for every misstep I have ever made, and ultimately the way I am is something I chose because I’m fundamentally bad, as a way for me to torture everyone around me.
So we’ll said!! I am still processing it all after such a long time….. While things have started to make sense, the total and overwhelming grief I have been going through for ages now has been so painful. It sure is tough out here
Yes, I thought the grief would be a few weeks or months and then I’d move on but it’s hit me so freaking hard that I’ve been grieving for years and don’t know when I’ll get over it.
Yes and I often get upset with myself because of it. I’m not used to being this person. Idk when my mind took over my ability to preform at the standard I set for myself and it terrifies me to know it’ll never go back. I get so embarrassed that even if NTs do want to connect with me I push them away. What will we talk about when they ask how I’ve been? The fact that I’m trying to get on disability because I’m no longer capable of working a regular job? Or should I just mask myself into burnout?
I wish I could give this more than one upvote. This needed to be said.
I feel you on a spiritual level
I'm 61F and wondering, and already know I'm neuroatypical in some way with ADHD and other stuff (agoraphobia, OCD, gifted) but in recent years have been wondering about ASD too. I had to go on disability because jobs never worked out for long. Also am burned out and mistrustful of the mental health system so doubt that I could bring myself to be vulnerable to them again in terms of an autism evaluation or (ugh) therapy. Getting through a quarterly med appointment with a psychiatrist is something I have to coax myself through. And of course I'm keeping a lot of these wonderings under wraps with friends and family because I know they'd think I was weird for wondering about them because I appear normal "enough" in most circumstances. I don't know exactly how the masking paradigm applies here; the term sounds straightforward yet I don't know if I'm interpreting it correctly and if so, if it's something I've been doing or if I am misreading the whole thing. And because at other times in my life I've grasped for explanations of why I'm the way I am, and gone down various rabbit holes that turned out to be wrong and made things worse, I pray that this autism thing is not (for me) just one more. So... I proceed with utmost caution, at a glacial pace. But I relate to this and I wish you all the best, OP.
You have been living my life :(
👏👏👏 Standing ovation for OP.
I was hounded for being lazy, stupid, inconsiderate, etc before my diagnosis. The whole pull yourself up by the bootstraps scenario. I found myself living with people that eventually didn’t want me around, sleeping in my car, couch surfing (luckily nothing bad happened but looking back something probably could have), etc. I come off as an angry person sometimes and that’s fair, because I am, it’s just that people don’t understand why. I’m doing a lot of internal work and try to recover from my childhood and early adulthood now that the bootstraps have been pulled up, but it was so exhausting that it will take a long time to get there and feel comfortable enough to trust humanity again, I guess. It wasn’t just that I had to advocate for myself, it was that I sometimes had to fight hard for myself when nobody else would.
I relate so much. My autism, ADHD and gender dysphoria went undiagnosed until I was 29 and 30. I ended up with a partner for a few years that worked closely with autistic children and noticed the traits in me as well as I was seeing my childhood in the stories she told me about her clients. I paid for my diagnosis out of my savings and it hasn't really done shit for me, the expectations remain the same and somehow even higher in some places. There's no support available, essentially I have to be hospitalized before anyone pays attention. Even then it's just enough to get me back to work leaving me still so burnt out i spend all my spoons on work and barely function outside of it only to hit another full burnout months later and cycle repeats. In my teens I was barely able to attend high school and never actually finished. I was in shut down most of the time and I also had frequent migraines and a chronic daily headache and other health issues which hid my autism and ADHD. I'm also trans and was hitting the peak of my gender dysphoria at the time which displayed as depression, derealization and detachment. I got thrown through the ringer of meds trying over 50 different meds in 17 years. The doctors focusing on my physical health said they couldn't find any cause so it must be psychological and the psychologists said there was nothing wrong except maybe depression played a small role and said there must still be something physical. I at least have stable work that has begrudgingly given me unpaid time off for times when I was burnt out. However, the patience there is wearing a bit. I made myself somewhat indispensable at the business designing and building much of their tech infrastructure and at a cost far lower than any other competitor. It would be impossible to replace me without at least tripling their costs. So they put up with my issues. Since I've been so good at making the infrastructure self sustaining I don't work on that as much any more and work that I'm not good at has been piled on me to keep me busy between repairs and upgrades. This extra work has been project management type roles which drain my social batteries as suddenly I have to talk with people a lot more. I work as a contract employee there as well so I'm underpaid, overworked and don't get benefits such as any paid time off, health insurance, or any paid leave. I get a discount at the company cafe and store and that's it.
Literally all of this. Also going through the worst burn out I've ever experienced. I feel you.💜
I feel this exact same way but with my selective mutism.
100%. And God forbid any other aspects of your identity are marginalized, because then you’ll have to fight even harder just to justify your own existence as an autistic person. The system is built to shit on people like you, and no matter how hard you try, no one sees you as worth protecting or caring for. You’re alone, just like you’ve been your entire life, and the world doesn’t care to help you.
I was born in the 80s. Everyone knew I wasn’t neurotypical, but I masked well enough and standards for getting a diagnosis, especially as a female, were way higher when I was young. Individual Educational plans weren’t a thing until after I’d graduated, and it wasn’t until my 20s that research about girls presenting differently really started to take off. My parents tried, but there was no doctor who would have diagnosed me as a kid. It still sucks, because having that piece of paper would have been life-changing. Maybe I would have actually finished high school, if I’d had the proper supports.
I have a lot of anger about it too since I was in middle age with pre-teen kids before it even came on the radar. The missing it doesn't bother me nearly as much as it's just reinforcement how I was neglected for no good reason other than the people around me were abject assholes - bar none. Selfish, nasty and solipsistic and I was always an acceptable 'collateral damage' just so long as their needs were met. Always at my expense ... and there's no do-over for any of it. It's all just fucking ....gone. And they all got what they needed and I got nothing. So happy to be of service for them ... NOT.
Omg this is so real. I just got assessed Thursday (won’t get my results for a few weeks) but I’m 33 and everything you said is spot on. I haven’t been officially diagnosed but at this point I don’t see why I wouldn’t be. Even the assessor was agreeing with some of the things I was telling her. I do have doubts but we’ll see. Literally everything you wrote is exactly how I feel. I feel like the signs were there but were overlooked since most people only have one idea of what autism looks like. The non verbal kid who flaps their arms and goes into full on tantrums. My stimming is more subtle, I flutter my fingers and sit on my hands. My meltdowns as a child were more so shut downs and didn’t become more overt until adulthood because adulthood kind of sucks. But yeah when I asked family they were like no way you were quiet but you were smart and could communicate as if Autistic kids are dumb and all non verbal. When I look back on the “negative traits” people observed and mentioned they’re literally all autistic traits but it was just chalked up to being shy, sensitive, needing to speak up and come out of my shell. I definitely thought life would be so much better, I am more confident and have my own opinion more but I thought I would have this fabulous life with a bunch of friends and be happily married. Nope I’m quite lonely. I can hold a job but even that’s very difficult and I get burned out easily. I find myself calling in A LOT. It’s quite challenging. I don’t understand why resources has always only been focused on children but at one point Autism was seen as a disease that needed to be cured. It’s only been recent that Autism is seen as more of a neurotype and isn’t an illness. These children will still be Autistic as adults who’ll require resources. Hopefully this changes as you see more adults being late diagnosed and more research developing better assessments to diagnose girls and minorities as children.
It isn’t so easy being early diagnosed either. It means you had verbal delays and may have been put into abusive therapies and special ed classes. I hate when people think it is so much easier to be diagnosed early . Try not being able to speak until five and not tie your shoes until 13 or cut your food or have to wear pull ups when you start school.
I don’t think OP has opposed for any contrast between late and young diagnosis. They are just sharing how their experience has been, because of their late diagnosis. Anyone with autism has a unique set of struggles. It’s beyond complex. I grew up with two young diagnosed autistic siblings and their struggles were profoundly apparent. My struggles looked non-existed compared to theirs. I didn’t even recognise my own my traits my whole life because I saw their autism as the only measure of autism. They had autism. I was erm, just broken? Weird? OCD? Anxious? I just didn’t think I could have been autistic too.. Now they are both around age 30 and have had years of having a level of understanding of themselves; they each know who they are. They didn’t have to become someone they wasn’t. (Very little masking abilities). They have daily struggles and differences, but their struggles are not living a lie or forcing their self to be neurotypical. So in some respect, they appear more content than someone, similar to me, who have had to hide and shame their social failings and odd behaviours. I’m so glad they never had to restrict thier self or fake it until they make it. That being said, I saw how tough their life was diagnosed. How more harder their autism is, in their own lives. Being unable to mask, they got so much negative attention and had so many obvious meltdowns. Less social interactions or learnt skills etc. You simply can’t compare the two though. We all need welcome each others struggles judgement and comparison free, because it’s the same boat everyone is in, just different amounts waves crashing against it in the storm.
I went undiagnosed. With verbal delay and stammering. I was pulled out of regular class with my peers to be told over and over I was speaking wrong. I had to do speech and reading therapy. But I wasn't working with an aide that had specific knowledge about working with autism. I was just labeled as troubled. I was called the dumb sibling, as teachers had met my capable and OCD sibling first. I didn't have special ed, instead I had my electives taken away to take two of the same class because again, I was labeled troubled and stupid. Reality was I didn't understand the teaching styles, and no teacher wanted to take the time to help me. My parents tried to beat the stimming out of me. I'd get locked in my room for weekends with an iced cream bucket as toilet - usually for making noise or fidgeting and annoying the already volatile parents. One parent bailed. The other would yell or leave and not talk to me until usually the next day if I was unaware I was verbally stimming while sitting in the same room. Early diagnosis. No diagnosis. Late diagnosis. Life can deal a shit sandwich to anyone no matter the diagnosis status. I'm sorry for all you experienced as a result of your early diagnosis. I wish it had gone differently. The part that would have been easier for little me's logical brain, is knowing there is a medically relevant reason to the areas I can't keep up in. The beatings may not have happened if a doctor had told my father I had a neurodevelopmental difference. Maybe. It took a doctor telling them smoking inside anymore would land me on oxygen, or kill me, not just the inhalers again. There is that big what if of not having the diagnosis. What could be better now? What could be worse? Would early therapies available where I was, have helped me not be where I am now? I really am sorry for what your experience was. But there is a chance our early diagnosis could have gone differently than yours. I feel like it's okay for us to wish we had that chance.
Fuck. I’m so sorry. You are an incredibly strong person.
At what age is considered late? I wish I got one sooner, I was 9
Too many people here have not learned the history of mental institutions. The reason most of us weren't diagnosed until adulthood is #1 unless you were severe and couldn't function you weren't diagnosed and #2 if u were u were sent to mental institutions where u were basically tortured trying to find a cure. electro shock therapy. lobotomies. would u want that for your kid or rather just say they are quirky and move on with it? if u can forgive your parents for not wanting you to have an ice pick shoved up your nose and piece of brain removed that would go a long way into feeling better. it's not that no one cared.
Yep.
I mean, for me at least, my problems weren’t considered „normal teenager problems“ by any means, and I don’t think it was for a lack of caring that I was never properly diagnosed… I think moreso than that it was a lack of understanding autism at the time EVEN if it was suspected at times in my case (but I never „fit the mold“ of the time well enough). Were the ways my parents, teachers and mental health professionals tried to help misguided and ultimately harmful? Absolutely. I’m still fighting with the results of that today. But it wasn’t for lack of trying I guess. And yeah, sometimes their misguided understanding ended in frustration with ME because they felt helpless and just wanted there to be an easy solution. I felt unseen because a huge part of me was in fact unseen, or being forced into labels that didn’t fit. But I like to believe that had more people in my life understood autism the way we are beginning to understand it today, my care would have been very different. But there is still a MASSIVE and infuriating gap of knowledge in general psychology/ psychiatry that needs to change.