Anyone else feel angry for not getting an early diagnosis?

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yroehr
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11 Aug 2021, 12:51 pm

I'm over 50 so, I'm struggling with the idea of getting an official diagnosis; I'm not sure a diagnosis before now would have been constructive outside of finally knowing I'm not "crazy". My overall thought process is "What's the point?" I think I found a position I can stick with since I largely work alone and I can pretty thoroughly plan for my work-related social interactions; I even see patients via telehealth.

I had been seeing a therapist for PTSD (I was in the military) but, my experiences and feelings just don't fit that diagnosis (plus, I've been masking behaviors my whole life). I started seeing a therapist because I was struggling with some "mean girl" issues at my previous workplace but, acceptance therapy didn't seem to fit either -- why would I "accept" being abused in the workplace? I really needed some coping mechanisms to get through the day with these people who are just plain mean.

I think my main issue is accepting my shut-down mode -- I see now have been incredibly burnt out for many years. And I, too, was a super-embarrassment to my very social, clinically narcissistic, mother. I simply didn't live life "normally" and girls should not be so smart as to intimidate anyone who might possibly want to date me -- let alone marry me.

My husband is not sure of the whole situation but, has been very supportive when I need to shut down -- which can be for all my days off from work. The last time I was able to see the light at the end of the tunnel, I took 6 weeks off from work for gallbladder surgery and I feel I need to do something like that again soon.

Any thoughts or advice for a newbie?



kraftiekortie
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12 Aug 2021, 9:27 am

Of what material benefit would an official diagnosis be?

I'm guessing you want a sort of "closure," in a sense......a "reason" for your shutdowns, etc. Which I find is a good reason to seek a diagnosis.

One thing to note: there really aren't all that many clinicians who are experienced in diagnosing adult autism, and even less clinicians who are knowledgeable about it.

What I would myself: is it worth the hassle?

I'm fortunate I got my diagnosis when I was very young. I'm fortunate my autism was obvious from an early age.



yroehr
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12 Aug 2021, 4:04 pm

I agree. There is likely no benefit other than closure. I'm very encouraged by this website because I don't feel alone anymore. My biggest frustration is clinicians because they often can't think outside of whatever they were told to memorize so, seeking a diagnosis would only be more frustrating.

I'm also lucky because I found which foods trigger a total lack of impulse control so, although restrictive, I'm confident I can function as long as I stay clear of those items.

I just want to thank everyone here for being here.



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12 Aug 2021, 6:49 pm

Welcome, yroehr; glad to have you here. I don't know specifically which foods are unsettling for me, but over the years I've cut out most processed foods. Neat that you have awareness.

Last year I couldn't get an ASD diagnosis for my 9yo daughter b/c -in part- by accommodating myself, my daughter's environment is so accommodating she doesn't "show" her ASD in textbook ways. Ironic: I helped her (in the ways I could) so I can't get help for her (in the ways I can't). Meanwhile my mom-friends who blare the TV in the background and feed their ASD children Cheetos every day can get help b/c their ASD kids are a mess. I know my daughter needs help, b/c my ASD-like mom also created a ASD-friendly physical environment for me: it only goes so far in this world - to about age 11 for a girl of our type.

Maybe you relate to some of that. Maybe not. In any case, welcome.



yroehr
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13 Aug 2021, 11:08 am

Thank you Sharon.

That's definitely a frustration to not fit in due to taking care of what you can.

I'm very happy to be here.



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13 Aug 2021, 4:15 pm

I'm so deeply angry. I'm so angry that I spent my life trying to be something I didn't know I wasn't. I thought I was crappy at being a person. Turns out I'm not so good at being neurotypical. That whole time--my first 36 years, I was supposed to fit a certain mold. I tried so hard, and there were many painful instances where someone pointed out to me (in some way or other) that I didn't fit the mold. I wish I had known then that I was never meant to fit that mold, that my path to happiness was a mold for me to shape as I wanted.

I see these successful autistics and I really resent them. I see parents who now know to protect their child rather than force them to experience all the disappointments that most children cope with. Become "resilient." Well, buddy, take my brain for a day and try to cope, and then tell me I'm not resilient. A NT would become overloaded by things that I've had to learn to tolerate. I think about scratching nails on a chalkboard. You see how a typical person reacts to that stimulus. They complain, they scream, and everyone is fine with it. My stuff, it was wrong of me to complain about it. "That's not too noisy, that's not too bright." Nobody took my bullying issues seriously, and so I stopped trying to get help. I stopped trying so much that seriously bad things happened, and I let them continue. Apparently, the people who didn't help me earlier are now certain they would have helped me with that. And I still doubt it. It would have been trivialized, kept secret, and I would be the object of retaliation from my bully.

I think about lives I wish I'd lived. I wished I lived with my grandfather or went away to school. I wish I had been home schooled. I wish I could have gone to a school that had children like me. I wish that school was on the other side of the country. I think about every year, every moment when someone could have seen (diagnosed) my autism, what would come next? Would life get easier? But the mental health system seems to work in pods. Their knowledge is strictly related to their specific area of focus. I can't count the number of psychiatrists or therapists I have been to over the years, but I can count the number of times I was screened for autism. Zero. Angry. I got so angry over these past years that I've been in a dissociative state.

I wish I had a friend who understood. As of now, I lost the friends I had by alienating myself. How could I be with them when everything about me was just sad? And because I was in burnout, my autistic behaviors have increased, and my stamina has decreased, and I would just bring everything down. I met adult autistics once, but we didn't keep in touch. Still, spending time with them was the happiest day of my life. I've tried to figure out how to make autistic friends, but everything sorta shut down with covid. And now I'm just lost. Stagnant. Yes, I feel angry for not getting an early diagnosis, if only because knowing would have made things so much better. I could reclaim the energy I wasted trying to be normal. I could use that energy to be someone and do something.


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13 Aug 2021, 8:01 pm

mau_tie wrote:
I'm so deeply angry. I'm so angry that I spent my life trying to be something I didn't know I wasn't. I thought I was crappy at being a person. Turns out I'm not so good at being neurotypical. That whole time--my first 36 years, I was supposed to fit a certain mold. I tried so hard, and there were many painful instances where someone pointed out to me (in some way or other) that I didn't fit the mold. I wish I had known then that I was never meant to fit that mold, that my path to happiness was a mold for me to shape as I wanted.

I see these successful autistics and I really resent them. I see parents who now know to protect their child rather than force them to experience all the disappointments that most children cope with. Become "resilient." Well, buddy, take my brain for a day and try to cope, and then tell me I'm not resilient. A NT would become overloaded by things that I've had to learn to tolerate. I think about scratching nails on a chalkboard. You see how a typical person reacts to that stimulus. They complain, they scream, and everyone is fine with it. My stuff, it was wrong of me to complain about it. "That's not too noisy, that's not too bright." Nobody took my bullying issues seriously, and so I stopped trying to get help. I stopped trying so much that seriously bad things happened, and I let them continue. Apparently, the people who didn't help me earlier are now certain they would have helped me with that. And I still doubt it. It would have been trivialized, kept secret, and I would be the object of retaliation from my bully.

I think about lives I wish I'd lived. I wished I lived with my grandfather or went away to school. I wish I had been home schooled. I wish I could have gone to a school that had children like me. I wish that school was on the other side of the country. I think about every year, every moment when someone could have seen (diagnosed) my autism, what would come next? Would life get easier? But the mental health system seems to work in pods. Their knowledge is strictly related to their specific area of focus. I can't count the number of psychiatrists or therapists I have been to over the years, but I can count the number of times I was screened for autism. Zero. Angry. I got so angry over these past years that I've been in a dissociative state.

I wish I had a friend who understood. As of now, I lost the friends I had by alienating myself. How could I be with them when everything about me was just sad? And because I was in burnout, my autistic behaviors have increased, and my stamina has decreased, and I would just bring everything down. I met adult autistics once, but we didn't keep in touch. Still, spending time with them was the happiest day of my life. I've tried to figure out how to make autistic friends, but everything sorta shut down with covid. And now I'm just lost. Stagnant. Yes, I feel angry for not getting an early diagnosis, if only because knowing would have made things so much better. I could reclaim the energy I wasted trying to be normal. I could use that energy to be someone and do something.


I hope you can find some way learn to live with your past or at least make it part of your history not your current so now that you do know you can use this knowledge to have a good rest of your life.


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SharonB
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14 Aug 2021, 11:13 am

mau_tie wrote:
...My stuff, it was wrong of me to complain about it. "That's not too noisy, that's not too bright." Nobody took my bullying issues seriously, and so I stopped trying to get help. I stopped trying so much that seriously bad things happened, and I let them continue. Apparently, the people who didn't help me earlier are now certain they would have helped me with that. And I still doubt it. It would have been trivialized, kept secret, and I would be the object of retaliation from my bully.

The invalidation and dismissiveness were overwhelming for me. I went silent about my difficulties (and do to this day). The Catch-22 is that the perception in my family is that I have a charmed life. It's very confusing to me still. The other day I was spitting mad about what I would really want to tell my "supportive" parents and sibling - it wasn't pretty. I can't seem to find moderation between "sweet young thing" (I'm in my 40s) and enraged beast. I'm pretty sure if I got diagnosed earlier it wouldn't have changed squat, b/c my niece was diagnosed early and my sibling treats her the same (awful) way that my parents treated me. I would love to show up all gang-busters and give them a piece of my mind. Trying to do it "sideways" is beyond me. Letting it go? I see it most everywhere in the culture... it's still got us. At least in my own home I have some control and there is more validation.



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15 Aug 2021, 2:37 pm

I've just recently been filling out an 'evidence' form for a referral so my daughter can get assessed for ASD. I got really sad doing it, because I see so much of the problems I had growing up, and then I did get angry because I wondered where the people were who should have been doing this for me when I was her age? Why did no one spot any of this? Why was I left my whole life thinking something was wrong with me and hating myself for not being able to function in society the way everyone else did?

But I grew up in the 80s and 90s, and really all people like my parents and teachers had to understand autism was Rain Man. And I was good at masking and watching and emulating NT behaviour. It wasn't their fault. It wasn't anyone's fault. And that's hard to accept sometimes, that some things are no one's fault.


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17 Aug 2021, 2:19 am

I'm more sad than anything else. About a year after my diagnosis of HFA in late 2004, I ended up in hospital with depression which wouldn't go away no matter which type of antidepressant they prescribed me. So ECT it was. That helped enough for me to leave hospital.

Growing up in the 80s and 90s didn't help any. I went to 7 different schools and by the time teachers saw something "odd" about me, I left. In 1991 I was made to see the school psychologist. This was during class time and they tried to keep it quiet so of course everyone knew and I became the school "psycho" and "spastic". The psychologist suggested that I should have gone to extra classes the next year because I was failing everything, but guess what? I changed schools. It was for the better because I actually did ok in all my subjects and even made a few friends that I never had in the previous school.

Things went downhill after a good friend committed suicide. I failed Year 12 and ended up on the dole. I went to many job interviews but couldn't get a job until I went with my sister to a double interview at a mushroom farm. She did all the talking and secured us jobs. I started picking mushrooms but I was too fussy making my mushroom presentation look good and it slowed me down so I signed up for working outside. I was the first female to ever do so. I worked with 10 guys and they used to try and shock me with their dirtiest jokes and comments about women. I laughed it all off and gradually I was accepted. I got my forklift, front end loader and boiler operation tickets so that added variety to my job. However, I cracked when I was made safety officer and had to communicate with the big bosses. I did a s**t job of it and the bosses didn't like me. One day I was laughed out of a meeting so I walked a very long way in anguish. I was found by a security guard who took me to hospital where I spent three weeks. They did a lot of tests and I was diagnosed with ADHD.

When I left hospital that first time, I saw a psychologist who saw what the hospital psychs hadn't. She sent me to her colleague and friend who specialised in autism. I was like, "Autism, what's that?" I agreed to an assessment and was shocked when I received the report in the mail stating that I have HFA (not Asperger's). For some reason, this hit me harder than the ADHD diagnosis and I take medication for that. My mum immediately went on a guilt trip (she thought my problem was my eyesight, as I had six operations as a young kid on my eyes and the surgeons never were able to fix the original issue which was a squint. So now I have no depth perception and my eyes don't line up properly. This could have been the reason why no one questioned my lack of eye contact all those freaking years) and when I asked her questions about my behaviour as a kid (specifically autistic behaviour), she would clam up. But I needed to know (and still do).

So I guess that's why I flew under the radar, so to speak. The DSM-IV came out when I was barely present at school and then when I went to work, my coworkers thought I was strange but that's it. It took burnout to get noticed. After that, I continued work for a while but really, I'd had it. I left and went on the Disability Support Pension, which I've been on ever since. I have a cleaning job now which I wouldn't have if it weren't for COVID-19.

It's been interesting to read everyone's stories. Some of you have been through hell which highlights your incredible resistance.



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18 Aug 2021, 6:07 am

To answer OP's question, yes.. angry and resentful.

An early diagnosis would've saved me from a lot of trauma, psychiatric misdiagnosis' and from being unethically institutionalized by the corrupt "mental health" systems in place destroying my soul, brain and body with forced hardcore psychotropic drugs not approved for "chemical imbalances" I never had in the first place.



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14 Sep 2021, 10:30 am

In a way, I wish I was disgnosed earlier, but in another way, no.

I think a lot of people have a difficult time understanding what autism is all about, so they don't know how to actually "help" and can hinder progress in many ways. By that, I mean that a lot of people who are "trying to be helpful" are getting in the way. I don't think would have turned out much better, except maybe how my time after high school would have handled it better. My parents didn't know much about college and stuff. I guess I got lost in the shuffle after school and still toil in there. Many uninspiring jobs, despite giving my all, too much in fact for people who didn't care. I guess they saw the "wanting to do good, to fit in" traits in me and overused it. I'm not sure having others involved to try and "fix" me would have helped. For me personally, maybe knowing earlier would have helped, but maybe I would have isolated earlier, thinking I was different,, not only thinking I was, but actually knowing I was different, although I always kinda knew in the back of my head.



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16 Sep 2021, 10:22 pm

I would have greatly appreciated it if the school psychiatrist had given my parents a manual on how to manage an autistic child, and particularly explained to my father how smacking a child will not stop him having a meltdown over some minor things.
Things eased up a bit when I learned to self medicate with weed and booze (I grew up in a European country where alcohol is legal at age 16, so, de facto 15, and a rural-ish area where weed was occasionally available, but nothing else, really, so there wasn't much of an option to get into more serious things than weed and vodka).
Additionally, school was never much of a problem and I graduated with an average A-level score without much effort.

I learned about ASD from an ex-girlfriend who went to medical school and called me up to tell me that she learned about this thing in a lecture and she thought that I might have it.

Anyway. I think especially the way my parents and I related to each other could have greatly improved, had the school psychiatrist in the 80s already known about ASD. On the other hand, I'm not sure if my father would have accepted that - he isn't the most tolerant and understanding person, and a bit short tempered, and a boomer who always knows better than everybody else, even doctors and experts.
I studied and do nerd-stuff for a living and am able to pay the bills, but have few social relationships beyond work, so I guess some earlier intervention might have given me a different outlook on human relationships, too.


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04 Oct 2021, 7:57 am

I was diagnosed at age 15, which I think was the perfect age.

My parents didn't need an autism diagnosis to support me properly. My Dad is undiagnosed autistic and intuitively understood, and plus I did have an early diagnosis of PTSD (my adoptive brother confessed to sexually molesting me) and if you mistake meltdowns/shutdowns for flashbacks, you end up responding to them pretty appropriately.

My first school, on the other hand, was desperate for something to be "wrong" with me, something they could pathologize me for instead of having to admit that child abuse is actually a real problem with real consequences. They figured I had ADD, and if they could get me a Ritalin prescription I'd magically become a compliant, normal kid. But the many doctors they referred me and my parents to disagreed. If I'd been diagnosed with autism at that time, I can see two possible outcomes. Either my school would have ignored the diagnosis because it's not something that medication could fix, or they'd have embraced the worst recommendations of ABA and abused me even more.

The experience with that school turned me pretty strongly anti-psych and anti-diagnosis. When my parents actually had a principal in my third school (which I attended for a few months in grade 7) suggest Asperger's, they mentioned the condition to me to see my response, and I was offended that such a thing was even considered a diagnosable disorder. If I'd gotten a diagnosis then, I'd have probably rejected it and hated being labeled, and it'd have been a lot harder to accept myself as an autistic person. Plus, at that point the most likely therapy that would have been recommended would be social skills training, which would have just gotten me even madder.

By the time I got my diagnosis, I'd been homeschooled for almost two years, and had some opportunity to recover from school trauma. I also had developed a special interest in autism and started recognizing myself in it, and associating autism with a positive, neurodiversity viewpoint instead of seeing it as a disorder. So, when I got diagnosed, it was vindication of my own self-identification, and I knew enough to know that it didn't mean something "wrong" with me.

If I'd gotten diagnosed later, though, the transition to adulthood would have probably gone really badly. At the time of my diagnosis, we had no clue that I was impaired in independent living skills, and the stories of autistic adults who ended up homeless or institutionalized served as a valuable warning to me.



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14 Oct 2021, 7:36 am

I will turn 57 on Tuesday, and I have only now this week managed to piece together others “complaints” about me in a constructive enough way, where I could begin the journey towards diagnosis and treatment/life-reengineering as someone on the spectrum.

As I begin to read about the traits and challenges, my behaviors in school at an early age have a much more meaningful context. Unfortunately, growing up in the late 60s and into the 70s—in a school system bursting at the seams due to a local baby boom at the time, I think my elementary classes typically had 30 students jammed into rooms built for far fewer desks—there was no way I would have gotten sufficient attention to get identified, and my parents weren’t tuned into parenting either.

And ever since, I’ve experienced different sorts of finger pointing by people around me. I can understand why they felt frustrated/angry with me now, but hadn’t a clue in those moments, what could possibly be the issue with *me*.

With that said, I definitely feel that inner invitation to get angry at others for never helping in a constructive way. But particularly at my age, I don’t want to waste any of my recovery time on recriminations. I will stand back from those instincts, and rather cultivate gratitude that a recent “wake up call” moment, finally gave me the time away from work and many other stresses, to put enough of the puzzle together and get started on receiving help.

Anger is a choice, and ultimately an empty one. So I acknowledge the failures of everyone around me in not managing to help me see myself in a different light, and I choose to forgive their blindness. They didn’t have the skills or know how to perceive the ways I was disconnected from their version of reality, and I repeatedly fell through the cracks. Unfortunately that’s life sometimes. But at least now I don’t have to wallow in the same state of confusion I’ve had for the better part of 60 years. For that I am very very thankful.

Peace.



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14 Oct 2021, 12:10 pm

bthathaway wrote:
I will turn 57 on Tuesday, and I have only now this week managed to piece together others “complaints” about me in a constructive enough way, where I could begin the journey towards diagnosis and treatment/life-reengineering as someone on the spectrum.

As I begin to read about the traits and challenges, my behaviors in school at an early age have a much more meaningful context. Unfortunately, growing up in the late 60s and into the 70s—in a school system bursting at the seams due to a local baby boom at the time, I think my elementary classes typically had 30 students jammed into rooms built for far fewer desks—there was no way I would have gotten sufficient attention to get identified, and my parents weren’t tuned into parenting either.

And ever since, I’ve experienced different sorts of finger pointing by people around me. I can understand why they felt frustrated/angry with me now, but hadn’t a clue in those moments, what could possibly be the issue with *me*.

With that said, I definitely feel that inner invitation to get angry at others for never helping in a constructive way. But particularly at my age, I don’t want to waste any of my recovery time on recriminations. I will stand back from those instincts, and rather cultivate gratitude that a recent “wake up call” moment, finally gave me the time away from work and many other stresses, to put enough of the puzzle together and get started on receiving help.

Anger is a choice, and ultimately an empty one. So I acknowledge the failures of everyone around me in not managing to help me see myself in a different light, and I choose to forgive their blindness. They didn’t have the skills or know how to perceive the ways I was disconnected from their version of reality, and I repeatedly fell through the cracks. Unfortunately that’s life sometimes. But at least now I don’t have to wallow in the same state of confusion I’ve had for the better part of 60 years. For that I am very very thankful.

Peace.

Welcome to Wrong Planet and Happy Birthday in advance.

The people who were our carers, our parents, teachers, and clinicians if we used them had no means to identify us because the knowledge of of autism back then was what is called the most “severe” or “low functioning” autism today. If you did not fall into those categories you were misdiagnosed or not diagnosed at all. I am very very thankful that the knowledge of autism expanded enough that I was identified. Previous generations of autistics went through their whole life without knowing.

I remember those noisy, crowded schools, sensory hell they were.

Aspergers/Autism Network Adult Resource Page. They are based in New England and highly regarded.


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Last edited by ASPartOfMe on 14 Oct 2021, 12:58 pm, edited 1 time in total.