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orbweaver
Snowy Owl
Snowy Owl

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Joined: 12 Jun 2022
Age: 49
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20 Jun 2022, 6:36 pm

I was self-diagnosed between roughly 2000-2004, then received an official diagnosis (though several previous people either insisted ADHD, or that I just had general anxiety. I did not get the Asperger's diagnosis until I had better insurance.)

I'm coming out of a period of denial that lasted between 2007-this year. My ex (autistic, went through extensive evaluation in a psychiatric hospital, more psychiatric history than me, more disabled than I was) kept telling me I wasn't. (And yet my ex went on to be highly educated and much more personally successful than I am...)

I feel like I'm self-diagnosed even though I have a diagnosis. And I came to feel... well, if my ex was autistic... clearly I was not experiencing what my ex experienced. I have had people disbelieve me anyway, so... I came to disbelieve my own history, even, and even for a while convince myself that I was neurotypical despite the fact that I also have an ADHD diagnosis.

I guess part of why I need to write this out is for my own personal reasons, because I've just come out of a period where I had two burnouts and have never quite regained what I had before, and something needs to explain my life to me.

My history:

Premature with some delays. According to my mother, I was delayed with speech and didn't start talking until around 4 (but then spoke in complete sentences), and she also says that early on, I didn't ask for things, I'd take her to the thing, point, or put her hand on it. My mom felt that I was normal because she was like this, and so is her whole family (though her two sisters were both in special ed and both ended up on disability). My mom has briefly admitted that she thinks she is an Aspie, here and there (she actually acts way more classically Aspie than I do, and somehow I turned out to have much more emotional/social intelligence than either of my parents), but then gets defensive and weird about it and goes back to saying "we're normal, you're normal." My childhood was extremely painful for her and she can't talk about it.

Also, she believed that I was normal because I only seemed to have problems after starting school and or while in school. I was happy while I was at home, I seemed like a happy and content child before school started, I engaged well with my (both very very ND) parents, and my parents were very involved with me and felt they understood me better and could do a better job with me than the school system was. So I received very intense support and interventions at home, and after every period of homeschooling, jumped ahead quickly.

I had sensory issues relating to being touched that made some adults later think I'd been molested, but my mom somehow didn't think anything of it, my parents were not particularly touchy-feely themselves. I had sensory issues in early childhood, did a lot of repetitive stimming of various kinds (and I stim most of the time I'm awake even now, but every time I've tried to not do it publicly - it's redirected into some kind of self-injurious habit).

My parents did not believe anything any school evaluator said about me and refused to have me evaluated for autism. A number of teachers including a special ed teacher told my mom that I was r-slurred. (That specific word.) My mom insisted on getting me an IQ test where we found out I had an IQ of 137 and was several grades ahead in most subjects. Which supported, to my mom, the belief that I was just a misunderstood gifted kid, and I was "checked out" and disruptive because I was bored.

My parents have no idea what was going on with me *while I was in school* because I never told them, apparently, and never talked about it. I remember just not being able to. For large parts of my childhood, they could ask me questions and I could say yes or no. But I could be very articulate when talking about cat diseases!

My school history is that I was moved to around 9 different schools during the course of my K12 career (6 of those before I was 11), was homeschooled for almost all of 2nd, 5th, and 6th grades, expelled from 7th (long story but basically it involves an obsession with revolutions, passing a petition on campus, biting a teacher who'd grabbed me from behind and tried to take my petition, etc...), stopped attending in 10th (and failed pretty much every class except for music and science). I often got kicked out of this or that program for inappropriate or weird behavior, and didn't really learn to act publicly "normal" until later on (weirdly, as things started getting worse for me and I started self harming). School was also a social minefield and the reason I was moved into more advanced work (in addition to my parents thinking I was just a misunderstood genius) from main track was because I was being bullied in those classes and teachers couldn't control classrooms I was in.

When I got a B in a community college class at 13, related to a special interest, I resolved that I would at some point drop out and go to community college, then transfer to 4-year. I was really marking time at that point until I quit, and one day in 10th grade I just walked out of the back of the school and took the city bus to the mall, and never went back.

I was basically checked out and in my own world at school, but had frequent meltdowns and crying fits at school. I was kicked out of every private school we tried, within short periods of time, and the public school system was trying its damndest to get my parents to get me evaluated for ...something (I am female and still, autism came up several times.)

In childhood, I had extremely obsessive interests - the first I remember, was cats (especially cat diseases and cat breeds) - followed by medicine (off and on over my life; wanted to become a doctor, and ended up in health care for a while), astronomy, biology, botany, cars (this was actually really specific and narrow to specific makes and models), earthquakes, computers, and later in childhood, interspersed with more typical tween/teen things like music videos, rock music, specific bands, songwriting (as for that, my parents are musicians and heavily pushed music on me from a young age). The one female-typical thing I really got into for a while was Barbie (at 10-11, which is when I started actually being interested in more typical girl things). Otherwise I was kind of a tomboy, I really only played well with boys.

In childhood, generally I only studied one thing at a time and you couldn't get through to me on other things. I wouldn't pay attention unless I was getting 1 on 1 from a teacher, and just basically lived inside my head during class time.

I actually didn't start learning to read until comparatively late, around 6, but then caught on really fast, because of a teacher at a private school I was briefly at, who figured out that I had an obsession with cats, so started teaching me out of books about cats. I was single-focused to the degree that when I was in middle school, I'd get an A in only two classes (science and music) and fail everything else. I ended up with a really highly specialized vocabulary (it was very Little Professor) in childhood. I also had concurrent fantasy worlds (they're often highly connected to a particular interest I'm into at the time and kind of become like a memory palace for that thing) that I basically lived in within my head, and I'd make books about them, with maps, family lineages, etc. (I later got very, very much into tabletop gaming.)

Adults inside of school settings could see that I had problems, but adults outside thought I was this precocious, bright child. I really preferred interacting with adults. I also wasn't asocial, so much as I had social problems at school, and in general, with other girls. We lived in a multi cultural region and I was interested in different cultures and in general, the people around me.

Later on, I kind of began to socialize and blend in with other kids (and have a REALLY superficially normal, even popular looking teen and young adult life) because I'd found D&D players and Trekkers and computer nerds. By 15, I'd found "my people" and didn't really care who else liked me. (All of us were either ND, or gifted kids. A couple later went on to be diagnosed as autistic.)

My parents were actually really supportive of my interests; early on, my dad and I bonded over computers, and when I was 10, I was helping him with his computer business (putting them together and installing them and setting them up), I got into making fonts, taught myself programming in BASIC and wrote games. (I wish I had stayed interested in this. I did end up a graphic designer though.)

My mom worried in my teens that I wasn't shaping up like a normal girl though (lol she has no idea how popular I was with nerdy boys for a while, I had a bit of a glow up and had also learned to act a bit more "normal"). I was really obsessed with Star Trek and sci fi in general and when I was 14, my dad took me to my first Star Trek convention, and later I started meeting other teenagers into computers, Star Trek, and tabletop games. Later on I got into Rocky Horror and goth culture. I dated. I made out with a bunch of boys. I got dumped a lot. (My struggles with relationships even later were a big part of how I ended up in the diagnostic pipeline.) So my social life actually starts looking like a neurotypical teenager's for a while. This is a huge basis under which my ex believed I could not possibly be autistic, my social life in my teens and early 20s was too "normal."

I was dyspraxic, still am a bit, and I was in adaptive PE between kindergarten and dropping out of high school. I think that I was helped a bit by taking some ballet and some modeling. I quit after a few lessons because of a meltdown, but still knew what I knew, and this (when I was 12) is when I start to encounter a masking narrative, because I distinctly remember being very, very focused on my walk and how I was holding my body often to the point of physical fatigue. But people are beginning to respond better to me. The actual "mimicking other girls" thing sets in not long after with my first female friend on campus, who I was trying to copy and be like, but... usually I tried to copy more successful nerds/ND girls, not normie neurotypical girls.

There is a whole period of time during which I look relatively "normal." People don't know for example that starting at 13, I was self-harming (this picks up right at the point where I stop really seeming "autistic" and start to seem like Troubled Teenage Girl). Or that I had meltdowns, crying fits, etc. But... between 14-21, I had a social life, dated a lot, etc. I'm going to community college off and on as of 18 but I'm doing badly in school, can't hold a full load of classes, and whatever thoughts I'd had about a STEM career, are clearly not applicable. Starting at 18, I start having part-time jobs, though I get "dinged" a lot on little social behaviors and my same-age female coworkers seem to see me as younger. (How "behind" I was, could be very visible next to other girls.) But at around 20, I start doing some secretarial work for a one-girl office. Silent Generation employers, especially men, don't notice my differences from other people my age and often think I seem more mature. I get into doing tech work and I move out at 22. This is when things start actually going badly for me, I fall way way way behind in adulthood, can't manage my life living on my own, and have probably spent more of my adult life living with my mom than not. I've been underemployed for much of my adult life - and not all of it for social reasons. I think there is a masking dynamic here because my narrative of my work life is having a relatively normal-seeming work life for a while (until I quit the job or am fired) but completely falling apart at home. It has gotten somewhat better with me doing Work From Home, at the comparatively late age of my late 40s, and I'm terrified I'll never really catch up. I feel like my entire life, I've been running just to stay in the same place, while other people move ahead. I feel like my enhanced social skills from my years of study are more about maintaining existing friendship networks and being able to interact with coworkers and also have a relationship and better family life (lol listen to me listing all that out, what am I possibly asking for? The moon?) but I haven't really been able to make new friends in a very long time. It's actually been very hard to make friends since I was about 21. I feel like my friendships often ended up very codependent situations with the one ND I'm close to that I can be my real self with, vs moving through the world with superficial social success "just trying to get by" with nobody seeing that I'm struggling.

So, after all of this...

The thing is, I don't really have autism-grade social problems at this point... do I? Not to that degree. Not that ping anyone for "autism." I've been asked if I had Asperger's a few times - I am definitely a little odd. Every time I've even tried to be normal, I've done it in some way that seemed odd. But the social problems I have are really invisible to most people. They become obvious when I'm actually trying to fit into some space and I'm NOT around my usual coterie of nerds, eccentrics, hippies, goths (almost all of whom are ND).

Most people just don't see what I deal with, or what is going on in my head just trying to have a normal conversation.

Most people weren't there in my shrink's office when I was completely unable to speak, they didn't see me go mute in school a couple of years ago or at Toastmaster's, they haven't seen me basically shrink back into this shell of a person since my 30s (when I basically doubled down on masking and trying to be normal, and worked myself into two burnout crises), or know how competent and smart I was before burnout #2.

I make a very good first impression on people, and often found myself in situations when I was younger where I'd be offered a job I couldn't actually do. This is what it's like with me; I'm always letting everyone down because I can never keep up the pace I started at. I have tried to be better at managing expectations.

And it's not even like I have "normal" speech, I definitely have a quirky/odd way I speak. I feel incredibly self conscious with how much I'm like a cartoon character when I'm not deliberately being poised and businesslike. Talking about my emotions is extremely difficult and sometimes brings on a shut down. Masking my speech is the hardest part; running everything I think through a compiler in order to be understood by allistics, and not to offend more feelings-oriented ones. It's the most effortful part of masking for me and is exhausting.

I have some issues with my speech sometimes, often distorting or slurring words or even unable to speak if I'm experiencing very strong emotions. Sometimes I just can't even speak. It got a bit better with age, but it's still a thing, and causes me to pronounce things weirdly sometimes or sound like I have a weird accent. (Thinking about the times, when I was younger, that I'd be awakened by an earthquake, and scream "ERF QUACK" - it's like my mouth just stops really being able to form words when I'm under stress.)

Some stuff just organically got better. I have been okay with eye contact for a long time, my dad taught me to fake eye contact ("this is what I do") when I was 16 but I can do eye contact with people with whom I'm intimate (I just can't hold eye contact and talk, or listen; my eyes just unfocus when I'm engaging my speech center). It took me a VERY long time to learn to drive and at one point after my last burnout, I even forgot, but I started driving again during lockdown.

I have not been a literal-minded, humorless picture of an Aspie child since my childhood. After I started hanging out on computer bulletin boards, I developed a sense of humor, and discovered I could make people laugh. (People think I'm hilarious; I just say and do funny things. Having a sense of humor about myself is a huge way I survive.)

I have social boundaries, I have strong etiquette, most of my social glitches don't show up when I'm in a room full of nerds, where I'll seem like one of the better mannered ones, but I do seem odd or immature in a room full of professional normie women. (Branding myself as a designer, seems to really help with this.)

Somehow I have managed to get by in the past 20 years without *huge* public social blunders (I seemed largely offensive to women I tried to date, though), and I am actually pretty streetwise.

I managed to go through a whole decade (between my teens and mid 20s) being relatively independent, doing my things, and while I was self-harming and experiencing anxiety, I was not experiencing sensory stuff the way I did in my childhood, or came to later. I feel like the environment changing is part of this. I remember when malls were havens, with carpeted floors and 70s-early 80s earth tone interiors! Now they are brightly lit, crowded echo chambers. I feel like I need more support in my 40s than I did in my 20s, and definitely more than I did when I was still living at home. And I wonder if my seeming "relatively normal" at different points in my life connects to points where I wasn't having to work and was living at home. My relationship I'm in is actually the high point of all of this, it's the first good relationship I've ever had in my life.

When I was believed autistic by my clinicians, I was in a bad spot with my physical health - and the optics changed later, when I was in a better place, at which point I was dx'd with ADHD. (I went on stimulant meds for about a year and just became WAY more autistic.) Also, I have learned INCREDIBLY good social pragmatics (in theory) - post-morteming every social situation I ever had, on paper, was a personal obsession, and being on the BBS at a young age gave me a place to learn about social stuff that was compatible with my brain (especially since I could read and re-read chat logs, learn from other people's mistakes, etc). I come off very "adult" to people, but then surprise them with how odd I really am. It's like I can't keep up the pretense. I feel like I manage to get by at this point because I went back into tech and design and can be a little odd/goofy as a designer.

The thing is, my diagnosis was based upon written narrative (basically that amounted to "why I think I am autistic" and backed up by some school records) and came relatively easily. My ex felt that I'd basically doctor shopped my way into a diagnosis, especially given that he had a much more extensive evaluation than I did. Later clinicians didn't think I was autistic, though I suspect that the most recent one (who I stopped seeing) would have come to that because of the degree of shut down I was in during session.

So I am wondering if at some point I will need to be re-evaluated. I do have some issues - severe social anxiety, random attacks of being unable to speak in some situation, severe executive function issues that are worse than when I was younger, and sensory issues that are worse than when I was younger. I am actually LESS socially able in my 40s. I would like to get therapy, but I only want to talk to a therapist actually familiar with autism (let alone female autism).

I began crawling into myself deeper and deeper at some point, and feel like I will never again be the person I was before my second burnout (in 2014, after graduating from a full time school program; I haven't done ANYTHING full time since).

I am terrified of what the world will be like for me when I'm old, that I won't be able to work enough to pay into my Social Security (I haven't worked very consistently in my adult life).

I have a loving partner but he is also very much in debt from school. We have talked about getting married, but should we even get married if at some point I might have to apply for disability or get some other kind of means-tested supports? (Which I doubt I would get, anyway.)

I think that my partner has thought that some things with me would just get better once I was in a more stable position, and I know he can't really afford to support me, we all have aging parents who increasingly need some support themselves. I am trying not to think that far ahead, I'm actually trying to get my life together again... but I'm kind of scared because how many times have I tried? I am hoping that if I can make it work while working from home, maybe I won't burn out again or have another autoimmune recurrence which has seemed to happen *every* time I've done anything full time outside of the house for very long.

Anyway... this is a lot to sit with. And it's been like... "whew, maybe I'm NOT autistic," to... "s**t, I probably was autistic the whole time."

And... I appear to be a very, very socially functioning person on the surface, even mature and poised. I feel like a ton of the repetitive stuff I do is very private and some is very internalized, and it isn't noticed on the surface.

Still and all... some people have asked before and I know that other autists spot me right off.

So... maybe I should go easier on myself eh?


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ASD (dx. 2004, Asperger's Syndrome) + ADHD


lvpin
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21 Jun 2022, 5:22 am

I'm sorry that you were invalidated and I understand somewhat how you feel. When I was first diagnosed I was so happy to have an explanation and then very quickly doubted myself. I wondered if maybe I was exaggerating in my interview. Then when family found out some members insisted this wasn't the case and it took years for them to realise it. I seem fairly socially competent until I get stressed and that is when I become monotone, can't make eye contact, rock back and forth etc.

What is important to remember is that a professional diagnosed you and someone else, even if they have the same condition, invalidating you doesn't mean the diagnosis is not valid. It is a spectrum and people all experience different aspects differently. The fact that you also have ADHD also makes it more likely you would have autism.

It's also important to remember that your view of your social competence can be wrong. If I were to ask the average person if I seem autistic, they would say no. However once they get to know me I will hear that I am aggressive by accident a lot (the amount of times I thought I was having a great time with a friend only to find out I apparently seemed angry the whole time is tragic) , don't make eye contact, and misunderstand situations. The crazy thing is, I don't even notice I do these things.



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21 Jun 2022, 7:08 am

I hope it's okay to add my experiences.

I also wonder about my diagnosis. I was assessed via Zoom during the pandemic, so the psychologists never actually met me, just saw me for about 2 hours onscreen. I'm not sure that's accurate.

I often wonder if I've got 'learned autism' because I was brought up by a very angry, unpredictable, widowed mother, who forbade any expression or discussion of emotion. I was never allowed to show any emotion or she got very angry, and often 'took revenge' later for whatever I'd supposedly done.

The other thing she'd do is, if I did show any emotion, she'd carefully store up the information and use it against me e.g. when my boyfriend dumped me after a very traumatic relationship, she told her friends a version of the details to show how difficult I was so they disliked me, and she deliberately brought up what happened between me and him, in order to make me react and appear crazy, and obviously to hurt me with memories.

I had no other relatives to turn to, just her. So I never learned how to cope with emotions or even what they were, because they were forbidden.

So I learned that I must never show any emotion for my own safety. Could my autism be a learned behaviour?


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kraftiekortie
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21 Jun 2022, 7:57 am

From what I read, I find your diagnosis to be valid.

Obviously, I'm not an MD, or a psychologist----and I haven't seen you in person.

But, from what you've written, you have many of the "hallmarks" of autism.

I'm "fortunate" in that I've never had to doubt my diagnosis, given to me at age 3 when I had no speech and was oblivious to the world.

You're a graphic designer. You are a success, despite (or because?) of your autism.

I've never gone beyond data entry clerk, though I'm fortunate I got in the civil service, and will retire in 6 1/2 months with a pension.



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21 Jun 2022, 8:52 am

Welcome to WP. I hope it is a pleasant place for you to hang out in.

Regarding your post...I'm not qualified to provide much information...it's not my field of expertise.

Some observations, which might not apply:

-If you've met one Autistic you've met one Autistic. We're all different.
-You can be different, too.

-I get the impression Autism in gals is sometimes more complicated than Autism in guys.

-There are other conditions that share traits with Autism.
-It takes a professional to tell the difference. You saw one.

-Being Autistic doesn't mean you have to be just Autistic.
-You can have other conditions at the same time.

-Asperger's and Autism may or may not be different—it depends.
-In 2013 the DSM grouped them and other stuff together as the Autism Spectrum Disorder.
-><- Before that Asperger's and Autism were listed separately...except...
-><- Before 1994 Asperger's wasn't in the book, just classic Autism.
-><-+-Aspie's were just "odd" back then.
-So when you saw a professional matters.
-I thought delayed language development normally went with classic Autism, not Asperger's...
-+-+-but I'm not a professional.

But one thing that definitely does apply: Welcome to WP!

P.S. Do you know if you are eligible for Mensa? That IQ makes me wonder.


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