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Autism, parenting, and my silence on recent “autism mom” memoirs

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I had planned to sit down today and give you guys the Handbook For Con Artists recap you crave, but a Twitter conversation prompted me to write this post, which has been coming for a while. I’ve talked on social media (and maybe here) about the fact that my teenaged son is autistic. And I’ve finally got the courage to say that I am, too. I am autistic.

This might have been why I didn’t consider the possibility that my son was autistic until he was seven years old and someone suggested it to me. A lot of the things he did at a young age, like flapping his hands and walking on his toes, melting down when he was overstimulated, becoming passionately engrossed in specific singular interests that could change in an instant, and other behaviors I won’t go into just, you know, because it’s not entirely my stuff to share, were things I had done when I was child, and I wasn’t autistic, so it never occurred to me that he was anything other than neurotypical. Even after diagnosis, I assumed that those were things neurotypical children all had in common and that other things “made” him autistic.

Now, I look back at my own childhood, much of which I don’t remember accurately due to my inability to recall what parts were real and what parts have been obscured by the elaborate fantasies I’d constructed. I was the weird kid in middle school, so I retreated into my head. While I sat at my desk physically, in my mind I was in my “head house,” a space that I constructed after learning about something called the method of loci (not to be confused with the genetics term loci). To this day, when I’m stressed almost to my breaking point, bored to the edge of literal tears, or caught in a situation I don’t want to be in, I fully check out of reality and go there. It’s not a case of idly daydreaming; I am completely immersed in that world and fully absent from this one. It has evolved over time, the decor has changed slightly, and there’s a big giant button on the wall that turns off intrusive thoughts if I push it. It’s a great self-preservation strategy that had a disastrous effect on my education. Teachers asked me why I wasn’t paying attention, why I wasn’t turning in my homework, why I wasn’t completing tests. I couldn’t give them an honest explanation. I told them what they wanted to hear because I already knew I was “a handful,” but lying to them because I thought I was giving the right answer made me even more of a handful, and I couldn’t figure out why.

“Jenny’s a wonderful girl. So imaginative. But she’s a handful.” I’d heard that so many times. Once, back in my elementary school days, I was playing with my cousins after Sunday dinner at my grandmother’s house. Seemingly out of nowhere, one of my uncles became furious at me. I didn’t know why; his kids and I had been playing a game where I was a mad scientist, one of us was an Igor, and one of us was a zombie creature that didn’t have a brain. To this day, I have no clue what I did wrong. Maybe I was too loud and obnoxious. Maybe I hurt one of my cousin’s feelings and didn’t notice, which I was prone to do because I didn’t understand which actions resulted in which reactions. What I do know is that one second we were playing and having fun, and the next my uncle stood up and said, “I’ve had it with that god damn kid!” and stormed out. Everyone sat around stunned. I was humiliated, but I didn’t feel like I deserved to cry, though I wanted to. My mother was furious with my aunt and uncle for weeks. My grandmother fielded hours of mediation phone calls over the incident. That became kind of a hallmark of my otherwise happy childhood: somehow, I would do something wrong, an adult would shout at me in front of people, and I would go off on my own away from the other kids because I saw how much my badness hurt the relationships in my family.

In second grade, I was diagnosed with ADD, like so many kids of my generation, and fed a steady diet of Ritalin. I’m not anti-pharmaceuticals as they’re used today––for god’s sake, take your pills, no matter what indie movies say––but I do believe that Ritalin was over-prescribed in the 1980s as a sort of “make your kid a behave” pill, based on anecdotal evidence from other people my age. Though Ritalin was supposed to make me focus, it did basically nothing. I ended up in some kind of group therapy situation where we all learned coping skills, and that worked better than anything. It was like a guidebook on how to be a normal kid. All I had to do was painstakingly imitate the way other people were acting? I could do that! I loved acting! It didn’t fix everything, but adults stopped yelling and I didn’t get into trouble as much, except where education was involved.

Again, this is stuff I still do. I recently told a friend about one of my most secret desires: to successfully say, “Don’t eat that, it’s horrible,” as a compliment. You know, the way people will tell someone, “Oh, don’t eat any of that, it’s just horrible,” in a joking way that implies they don’t want anyone else to eat it because they want it all? If you’ve never botched the landing on this particular phrase, trust me: there is no coming back from it. I’ve tried it on a few occasions and it did not go over well. I end up replaying it over and over like a gymnast watching themselves on video to see where they made a mistake in their routine. I spend a lot of my time studying neurotypical humans and their interactions as though I’m a complete outsider to the entire species, trying to figure out how to best camouflage myself. It’s just as much work and just as alienating as it sounds. I’m always woefully behind by a decade or so of social development, it seems like. But one day, I fully believe I’ll be able to pull off a chuckle and a “don’t eat any of that, it’s just awful.” I was gently informed that most people don’t practice these types of easy social interactions with the goal of someday doing them correctly.

When my son was diagnosed, I began to seek out other parents of autistic children, because it was something I was told would be very important in helping me “deal” with my child. I didn’t see what I needed to “deal” with; as far as I knew, he was growing up exactly the way I did. I mean, how could I really be sure he was autistic? He was just like me and (all together now), I wasn’t autistic.

One of the things I noticed very early on was that “autism warrior mommies” (and yes, there are people who call themselves that) were easily sorted into three camps. One type became so obsessed with their child’s autism that having an autistic child became their identity and the kid was kind of an afterthought if they were a thought at all. Or, they suddenly started diagnosing their neurotypical children with autism in a sort of Munchausen-by-proxy-by-proxy kind of deal; when the kids would be evaluated and deemed neurotypical, whoever administered the evaluation didn’t know what they were talking about, didn’t listen to parents, shouldn’t be in that profession, had a personal vendetta, etc. Then there was the third kind of parent: the self-diagnosing autism mom.

A note here: Some parents do have to fight to get their kids a diagnosis when resources are denied by schools and government programs. Some parents are autistic and don’t know it until their children are diagnosed, specifically because healthcare providers and educators weren’t as familiar with autism in previous generations as they are now. But as someone who has spent a lifetime carefully studying humans, I feel I can say with confidence that some people are just insistent on being the center of the universe. And that’s pretty evident with some of the self-diagnosing autism warrior mommies. I became highly suspicious of some mothers who would self-diagnose, then start speaking with authority on their children’s’ experiences, even if those children were able to communicate their ideas, feelings, and opinions themselves. They asserted themselves as experts on autism and would become intensely defensive if another autistic person contradicted them or suggested they not share intimate details of their child’s life online. One self-diagnosed woman in a Facebook group graphically described her seventeen-year-old son’s toilet accidents and admitted that he didn’t want her to continue doing it, but she asserted that she was “far more autistic than him,” and therefore had the right to do so. I began to see self-diagnosis as fake and selfish, an attempt by a parent to center themselves when their child was getting too much attention or starting to rebel in the ways children are supposed to rebel.

I wondered why any of these “autism warrior mommies” couldn’t understand that their kids were people. That no tragedy had befallen their families. That they had never been guaranteed a neurotypical child, and that the idea of an autism “cure” was abhorrent when there were already constructive therapies and special education programs that could improve the quality of life for autistic people living in an unforgiving and aggressively neurotypical world. So much of their “activism” was performative and self-pitying. It was never about autistic people at all, but all the ways neurotypical people were burdened by the existence of them. Why couldn’t they see that?

Earlier this year, someone tweeted a link to a diagnostic tool being developed to evaluate adults for autism. I’m not entirely sure about all the specifics about it, but from my understanding, they were looking for both neurotypical people and people on the spectrum to take an online test to…I don’t know. See if their test worked? I’m not a scientist, so I have no idea. I thought, “okay, I’ll bite,” and took the test. When I say “online test,” I’m not talking about some kind of thirteen question, Buzzfeed-esque “design your dream wedding and we’ll guess how autistic you are” quiz. I recognized a lot of the questions from the tests administered to my son and the exhaustive questionnaires my husband and I’d had to fill out during the process. When the results were displayed, it didn’t say “YOU GOT: AUTISM!” with a twee description and a gif from The Gilmore Girls or anything. It just suggested consulting a professional and showed me that my final scores were about a hundred points over the threshold they were using to describe neurotypical people in their diagnostic criteria.

I called my friend Bronwyn Green immediately. “Do I seem autistic to you?” I demanded, and she said yes. I asked why she didn’t tell me: “If I thought you seemed autistic, it would have been the first thing I said to you! I would have been like, ‘hey, you seem autistic!'” She said, “Jen?” and waited silently for me to make the connection. And then the connections kept coming. I showed my husband the scores and he said, “Yeah? You’re autistic.” It was some kind of open secret I had never been in on. And soon, I was a self-diagnosing autism mommy. And I hated it.

Here’s where things really go sideways to me: I believe it when autistic people tell me they’re autistic, even if they’re self-diagnosed. If someone is suffering from anxiety, depression, OCD and they self-diagnose it? It makes perfect sense to me. But it picks away at me to think that maybe I’ve gaslighted myself into becoming self-diagnosing autism mommy. Occasionally, it occurs to me that maybe there’s such a thing as autismdar. Like gaydar, but for autism. I maintain that LGBQA+* identifying people have an innate ability to tell if other people are straight or “one of us” after years of painstakingly pretending to be heterosexual while we’re closeted. Is the same true for autism? Is the reason I resent and doubt the mothers who use their self-diagnosis as both a weapon and a shield because I’ve spent so many years studying neurotypical people as a means of protective camouflage that I can now spot them from a mile away? I’ve met parents who self-diagnosed and thought, “Yeah, sounds about right,” while others I’ve rolled my eyes at and thought, “Yeah, right.” What creates the difference? can’t diagnose them, so why do I doubt some people but not others?

At this point, you might be rolling your eyes at me and thinking, “Yeah, right.” Because a lot of the times, I’m doing that, too. Despite all the evidence, despite it seeming absolutely natural and right to me to think, “I am autistic,” I worry that those moms who say, “Well, I’m autistic and I support Autism Speaks!” or “I was autistic, until I started focusing on my gut health,” feel like it’s natural and right, too. I’m not the gatekeeper of autism. I don’t know who is. Do I have the right to doubt some self-diagnoses but believe others? Do I even have the right to diagnose myself?

In the middle of all of this soul-searching, two books have been hot topics in the literary world. One of them, written by a woman referred to as the Elmo Mom, details all the ways she’s using “exposure therapy” (i.e., dragging her screaming, terrified child into situations that traumatize him) to right the wrong the universe did when it saddled her with an autistic son. In it, she daydreams about abandoning her son to have a new and better life with her neurotypical daughter. She expresses open hatred and abusive, neglectful behaviors then tries to justify them by imploring the reader to consider her own pain. She relates “and the whole bus clapped”-style anecdotes about kindly strangers coming to her rescue and praising her for her saintliness. She recently wrote an online essay about bystanders cruelly judging her for bodily wrestling her resisting, screaming child into a Sesame Street Live performance, asserting that her son has every right to be there. She never considers that he has every right to not be there, as well. In the end, he does sit through the performance, and she receives her reward: an hour or so of being able to deny that her son has autism.

Another book, the title of which I’ve forgotten, is the memoir of a woman who has no qualms about stating that she plans to have her autistic teen sterilized, lest he impregnate someone and she’s forced to deal with it. You’ll have to forgive me for not looking up this title and author; I just can’t handle reading her sickening garbage, yet I’ll still find myself compelled to.

Several readers of this blog have contacted me about these books, wondering if I would write a post about them or bring attention to them on social media. Like a coward, I ignored those emails. If you were a person who contacted me and didn’t receive a reply, I apologize for my rudeness, but this is all fresh and raw to me. It’s not that I’m struggling with the tragedy of finding out I’m autistic. That part of the experience is very much like the time I found out I have a deformed blood vessel in my brain. It was a thing I didn’t know, then I knew it, but ultimately it hasn’t demonstrated any impact on my life, so it’s just a thing that is. Realizing that I’m autistic was just a moment of, “Oh. Okay, that actually explains a lot of stuff.” It didn’t change who I am as a person or how I view myself. But it very much changes the way I view the people in my life during my childhood.

Now, when I read the disgusting thoughts of the autism warrior mommies who write their memoirs about how sad and tragic their children have made their lives I see myself in the role of that child, rather than as a parent criticizing another parent. I read about Elmo Mom fantasizing about abandoning her child for a better one and wonder if my mother had those same thoughts. Being the consequence of an unintended pregnancy had already put those seeds of doubt in my mind with regards to whether my mom ever regretted having me because of the life she might have had otherwise. It never occurred to me to worry that she might have regretted having me due to me not coming out as advertised. It never once crossed my mind to view my family with suspicion, to think that they might not have been annoyed or disdainful of my behaviors because I was a handful, but because of circumstances that were out of my control. And never in my life have I ever considered that I might have been in danger from the adults who had to care for me. All of this has made me think things about people I love that I don’t want to think. And for that reason, I’ve been unable to write about or think too deeply about these horrible, abusive women who have monetized hating their children.

This post might be super ableist. I can’t tell. It might be unfair of me to opt out of autism activism when other people can’t. That’s a valid criticism. Right now, I’m not even entirely comfortable labeling myself as autistic without some kind of paperwork or certificate to prove it, but I’m unable to separate myself out as an ally, either. I’m interested to hear from those of you who are actually autistic if you’re comfortable sharing your thoughts on self-diagnosis in the comments, whether you’re formally diagnosed or self-diagnosed. It’s a strange experience to be the same person you were yesterday, yet doubt everything about the narrative of your life story today.

 

 

 

*The “T” in LGBTQA+ was removed because I was speaking specifically about sexuality and I don’t know if transgender people have a gaydar equivalent. I excluded the T from the acronym so as not to make assumptions or erase heterosexual transgender people.

80 Comments

  1. Robin
    Robin

    Apologies if this is too raw for you, feel free to ignore if it is, but could you leave a link to that test? I’ve been grappling with wondering if I might be autistic for a while. Taking a test that actually has some thought put into it might help motivate me on finding a therapist/getting some help.

    March 23, 2018
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      • Robin
        Robin

        Thank you. And thank you for sharing this post. I know it must have been hard to put all these thoughts into words.

        March 23, 2018
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  2. Krista Golden
    Krista Golden

    I self-diagnosed seven years ago, two years after I first realized that I might be autistic. Self-diagnosis comes from a lot of research – mine started when I suspected my ex’s daughter was misdiagnosed with ADHD and not Asperger’s. I read about girls and women having different autistic traits than boys/men, and how some women are diagnosed later in life.

    I’d mentioned that I self-diagnosed last year to my therapist, who told me that she believes I’m too old to be tested (which is bullshit, but there are no adult services for testing where I live). I still believe that I’m autistic and identify that way. It’s becoming more accepted in the autistic community – the autistics themselves – and is recognized as being done because of expense/testing not being covered by insurance and lack of services/being too far from proper resources.

    The only drawback is that you can’t get many disability services without actual clinical diagnosis. I haven’t needed any yet. If I do, I’ll find someone who is willing and able to test adults.

    TL;DR Self-diagnosis isn’t a snap decision; it comes from research and reading, and it’s done for legit reasons.

    March 23, 2018
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    • JennyTrout
      JennyTrout

      Reading about the differences between girls and boys autism symptoms really opened my eyes about being diagnosed with ADD as a kid.

      March 23, 2018
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    • anon
      anon

      it’s also possible to not want the diagnosis out of fear it can be used against you

      March 23, 2018
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      • another_anon
        another_anon

        This is very true. My mom tried to convince me I had Asperger’s when I was in high school and I refused to believe her, mostly because I knew on some level that she’d be as bad as any of those “autism warrior mommies” and I didn’t want to give her that ammunition against me. Since moving out (and falling in love with another autistic person), I’ve realized/accepted that yeah, I’m on the spectrum, but I haven’t sought diagnosis because I get by fine in neurotypical society and I still prefer certain people like my mom don’t know.

        March 24, 2018
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  3. Bianca Sommerland
    Bianca Sommerland

    I’m glad you included the explaination about removing the transgender part of LGBTQ+, I was wondering if it was a typo, but it makes sense.

    I don’t have much to say, I think you’ve covered this topic very well, but just let me say I am going to share this post with my daughter. Being an ally doesn’t mean the same thing for everyone. Sometimes it’s posts like this. Saying I have been through this. Maybe you have too. And it’s okay.

    Thank you.

    March 23, 2018
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  4. Kristyle Solomon
    Kristyle Solomon

    There are a lot of self-dx, and you’ll find that the vast majority of the autism community are very accepting of them (there are a few who aren’t – just ignore them 🙂 ). It can be very difficult to get a professional dx as an adult, and especially for a woman – there are lots of reasons for that, and as you get more involved in the autism community you’ll hear all about them!

    It will probably take you a little while to get comfortable with your new dx, and no one will fault you for not jumping in to be an outspoken advocate now or maybe not ever, so don’t feel bad at all. There’s a pretty large and supportive community on twitter, so feel free to lurk and ask questions as you think of things. We’re all happy to help and make you feel better about suddenly not being alone. We were pretty much all “the weird kid” and it can be very helpful to suddenly find a bunch of other people you can say “hey, I do that too!”

    I’m both autistic and an autism mom (my son is 17), so I know where you’re coming from. 🙂

    March 23, 2018
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  5. Gwendolyn
    Gwendolyn

    I don’t usually comment, but this post hit something very dear to my heart.
    My sister and I both have autism, but I got professionally diagnosed at age 6 while it took her until age 22 to get that professional diagnosis, and only after it became an issue with school.
    The recent wave of Autism Warrior Mommies is extremely disconcerning to me because offering them a platform gives them a foot in the door, so to speak. Repeating the same bullshit over and over makes it sound less awful than it is. So seeing you speak up about it being bullshit is more comforting than I thought it’d be.
    Aside from which, my autism screwing over my jobhunting for a year until I got a 15-hours-a-week parttime job had me feel extremely depressed right up until January-ish, so seeing that autism doesn’t have to be an immediate career-killer is reassuring, thank you for that.

    To answer your question about self-diagnosing: I’ll preface this by saying I live in the Netherlands, which generally has good and affordable/accessible mental healthcare, so this may influence my experience.
    Personally, I have an immediate knee-jerk reaction of “Oh holy hell, no” when someone mentions self-diagnosis because basically all of my experiences with self-diagnosers involved the third type of Autism Warrior Mommies you mentioned too, with the occasional scattering of “Oh, yeah, I’m sooo autistic, I have my own way of doing things”. Those experiences have tainted my perception of it.
    In your case, though, you both recognized aspects of your autistic son’s behaviour in your own as a child and have friends and family going “Actually, yeah”, so I don’t feel like you’re being one of “Those People” but you might actually have a case.
    I’d suggest seeking a professional opinion either way, though, because self-diagnosing might help you understand yourself, but a professional diagnosis is often required to apply for government aid or extra help with schoolwork or something similar. Even if that’s not necessary now, it might be in the future.

    March 23, 2018
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    • there are very few support services for adults with autism here in the united states, and most of them are aimed at people who are completely unable to live independently. there is basically nothing for those of us who are “nt-passing”, not to mention the fact that a lot of professionals won’t even bother to diagnose adults. a lot of people seem to think it’s just something kids have, and i don’t know what they think happens to those kids when they grow up.

      March 27, 2018
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      • Sigyn Wisch
        Sigyn Wisch

        In California, there’s a service called the San Andreas Regional Center (with other sister regional center that, well, vary by region) and they can and do diagnose adults of all genders.

        April 1, 2018
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  6. Sara L.
    Sara L.

    I am the mother of a 13 year old boy with autism, but I am no kind of warrior. His autism has been a baffling experience, even though I am 75% sure my husband is also on the spectrum. But reading about those memoirs makes my blood boil. I read the blog post you linked on twitter, and couldn’t believe it. As lost in the woods I feel most of the time, when dealing with some of his behavioral quirks, I have always loved him fiercely, and wouldn’t have him any other way. Do I wish he had it easier in his life, dealing with other people out in the world? Absolutely, but mostly I wish there was more compassion and empathy for strangers and their experiences. Not in the “congratulate Elmo mom for dragging her kid somewhere kicking and screaming” sense, though.

    As for your self diagnosis, sounds pretty legitimate to me. Your description of childhood sounds much like things I have witnessed with my own son. I am sorry that this has turned into a painful experience for you, but I don’t think anyone with any sense would begrudge you bowing out of the fight for personal reasons. I wish you all the best!

    March 23, 2018
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    • Jemmy
      Jemmy

      My son is almost 6 and was diagnosed nearly two years ago. I realised recently that all the stress I feel around going places isn’t because my son is autistic, it is from having to deal with people who don’t understand/don’t accept differences. If it’s just us, we have a fantastic time, because we’re not trying to deal with other people’s expectations.

      March 24, 2018
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  7. Gil
    Gil

    On gaydar: I personally don’t have it, and haven’t ever seen it performed outside of private meetings about people who aren’t there and thus cannot be falsified.
    It could be that I lack the ability to read the social cues… or that the cost of a wrong guess to the gay side is too high, thus straight is always assumed.

    March 23, 2018
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  8. Bunbun
    Bunbun

    I’ve commented on here before under a different pseudonym that directly links to my Twitter (hi, I follow you on there), but for this post I’m gonna use an unrelated one, for reasons that may become clear later.

    I was following the same conversations as you on those two books and live tweets on them. During those it became clear that yeah, I’m almost positively also autistic. Almost every single thing, aside from being social, was something I frequently do. Including having bowel issues. I had the same happy places as you do. They were never vague and to this day they require very careful planning and realism. Events there make me physically feel and can leave me exhausted for hours. I can retreat there for days. I stim and I was a lonely child who didn’t get other kids but did get adults. I get sensory overload from sounds pretty easily. And I try not to be that person who always looks up stuff and posts really long explanations on YT videos or does the same in real life conversations, but I still do it. It’s hard to control. I know no one else cares but me. I care about facts. I care about the information and the truthfulness of things and it upsets me when both are ignored.

    Anyhow, so as this only came up as Not Neurotypical Behaviour some months back, I’ve only recently started looking into official diagnosing. And came to the conclusion that I wont. Where I’m from, state official healthcare sites are filled with utter garbage (outdated af) information on autism, completely ignoring that it just might be that people manifest differently (which is mentioned on the local autism advocacy org’s site). But they also mentioned that people shouldn’t be officially diagnosed unless the diagnosis is necessary for treatment purposes. If there’s a mention of it in your record, it WILL affect the way insurance companies and employers view you. Which is why they only diagnose in the case the person needs medication or therapy related to autism as those are compensated for by the state.

    So in my case, even if it would ease my mind and I might bring it up in unrelated therapy at some point, I wont be pursuing an “official” diagnosis.
    What the unofficial one has already helped with is adjusting to some early childhood trauma. If I have it, chances are good one or both of my parents do too and I do come from an abusive home. My mother was and still seems to be, narcissistic. But that never quite fit her. The results of her actions were narcissistic and abusive, but her motivations always seemed to be that she didn’t understand why or how anything worked or that she was operating on the level of a teenager; being oblivious that a child would need more than food and clothes. If she’s undiagnosed autistic, it would make a lot of her obliviousness more sensible. And it would help me deal with her and the abuse and finally let it go. It would be good enough closure. However, being vocally and visibly autistic on social media would not be good for me at the moment. It would almost certainly be counted against me by employers and I”m already having hard enough time finding work.

    As far as advocacy: I support as an ally. That’s the extent now. I already have my plate full with LGBTQAI+ stuff and there are only so many hours in the day. Being the one who points out how wrong everyone is in their ideas about autism at dinner doesn’t really change my role any. I’m already the annoying one with my besserwisser -ism.

    March 23, 2018
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    • Bunbun
      Bunbun

      Oh and I’ve grown to hate with passion the phrase “theory of mind” because it’s on every half-assed autism related website. Then again, it’s a good sign I don’t have to read that site since they have nothing to offer as far as solid information goes.

      March 24, 2018
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  9. Thanks for sharing that test. I have the same issue, where I’m totally fine accepting other people’s diagnoses, but feel like I’M the Faker. The sole person in the entire world who’s faking for selfish reasons. Everyone else must be honest and for whatever reason I’m not, especially because I’m verbose and know how metaphors work. Obviously I’m not autistic! I’m just pretending!

    But the test says I’m not, so it’s easier to make myself accept that.

    I find a lot of people around my age (like late 20s-late 30s) who are autistic women tend to be diagnosed with ADHD first. That’s how it’s been with me, I took the Ritalin too, until I refused to take it anymore because it was useless and the feeling of swallowing medicine is one of my sensory things. Now I’m thinking that the ADHD wasn’t necessarily a wrong diagnosis, but that I have some combo of ADHD/autism that’s probably going to get its own name in the DSM 6.

    March 23, 2018
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    • Oh, also, I did try to get diagnosed officially, because I struggle with work thanks to how social it is, and I had a bad experience. I went through all the hoops only to be told, “Congrats, you’re not autistic” even though that’s literally the exact opposite of what I wanted. They also dismissed the ADHD diagnosis (which had a HECK of a lot more testing and was definitely true), so you know… ymmv.

      Before that, I’d tried to get disability and was essentially patted on the head and dismissed in the style of the typical chauvinist. “There, there, silly girl. I know you’re hysterical but you need to listen to me because I’m the smart one here and I know better than you.”

      I’m not sure if I’ll ever try to get a formal diagnosis again. It’s especially hard because you know, you’d THINK that all the new data about how autism presents differently in women than in boys would affect how the system works, but nope. I even had to confront my therapist about this, because she kept saying “you don’t seem autistic to me”.

      Well, I learned how to hide it well, then? Or alternatively, I haven’t changed anything about myself but your ideas are wrong. Pick one.

      March 23, 2018
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  10. Maggie
    Maggie

    I sort of self diagnosed. My best friend happens to be autistic and she actually told me over a year ago that she thought I might be autistic as well, because she saw me exhibiting the same signs that she does. My first reaction was what? I’m almost 33, I feel like I should know by now whether or not I’m autistic. Then I started to read up from my early childhood education books from when I got my degree in it to become a teacher and thought ok, maybe I could be. So I casually mentioned to my mom, hey Bestie thinks I might be autistic like she is (my mom has her Master’s in nursing so my thinking was that she might have some experience or at least be able to tell me if I am just trying to make the diagnosis fit me to further identify with my best friend) Turns out I was diagnosed when I was about 6 and no one told me, and my parents never told the school because I had been placed in advanced classes and since it was Texas in the early 90’s they were afraid that I would be taken out of the advanced classes I was really excelling in and be placed in special ed like the other students with the same diagnosis. I was a little upset because I could remember all of the times that I’d been told to stop, and get over all the behaviors I had shown growing up and been told I’m just weird. Since then I’ve trying to become more active in the online autistic community, while staying away from the types of ableist autism mommy types who love to talk over autistic people like me, and many of the people I’ve “met” who try and speak for ourselves.

    March 23, 2018
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  11. Ell
    Ell

    About the trans equivalent of the gaydar (my friends and I call it the trans-scan) – it certainly exists, especially in the nonbinary part of the community. For the gaydar exaple specifically though, I think you’re fine to leave the T out.

    I also think it’s fair to need time to work out how to tackle a topic when you’re in the process of shifting from an ally mindset to an identity mindset.

    March 23, 2018
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  12. BloodyRose
    BloodyRose

    Hey, welcome to the club! I hope you get the same experience I did, where realizing this leads to a few personal revelations about your past and present! (“Oh! A lot of my anxiety as a kid was noise avoidance!” kind of thing)

    I’m not so much “self-diagnosed” as “everyone around me-diagnosed.” (My favorite description came from my brother, who told his girlfriend “She’s perfectly normal until you realize that she’s REALLY WEIRD” and that’s like my entire autobiography)

    I coded as “gifted,” and “weird.” My mom wouldn’t have guessed autism back then–I was hyperlexic and very verbal, and I didn’t socialize much. But she treated my unique needs not as some sort of bad deviation; she just figured I was a different kid and so I had different challenges. When more information about autism came to light, she was the first to suggest it to me–in a very “this would explain a lot” manner.

    Basically, I was really lucky. Obviously I can’t speak for the experience of those writers’ kids, but I get a sense from both of the writers themselves that they … don’t actually care for PARENTING, and have latched onto autism as the reason for their unhappiness when it might be that they just don’t actually want to be moms at all but feel they have to for, I don’t know, prestige or to be Normal or something. I’m not a parent (because I don’t WANT to be), but a lot of the things they describe as the Harrowing Burden of Autism just sound like … regular parent problems.

    One last thing. There is a moment in one of those miserable books where she describes how her son “compulsively circled the perimeter of a playground in the identical pattern over and over, oblivious to the other children, to the swings and slides, to the notion of play itself”, and OH MY GOD, that sums up my recesses for most of elementary school. I would walk the track around the playground with a blank expression. From the outside, I probably looked like a zombie. But that’s because nobody could see that as I walked, I was composing stories, inventing crazy space battles and peace brokering between fairies and mermaids and epic searches for dragons. I was having a grand old time, dangit!

    March 23, 2018
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    • Xebi
      Xebi

      Wow – that’s exactly what I used to do. I used to walk along the lines of the netball courts deep in thought while everyone else played football and tag and skipped and played role play games all around me.

      March 24, 2018
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    • MamaLich
      MamaLich

      ‘but I get a sense from both of the writers themselves that they … don’t actually care for PARENTING, and have latched onto autism as the reason for their unhappiness when it might be that they just don’t actually want to be moms at all but feel they have to for, I don’t know, prestige or to be Normal or something.’

      You’ve hit the nail on the head there. Reading about those two ‘warrior moms’, I had a feeling that if their kids didn’t have autism (and probably had any other quirk which made them different or stand out from other kids), then they’d be all over it like some kind of harrowing quest to overcome (hell, I had a feeling that they had a lot in common with that crazy, “MY SON GOT A TATTOO AND I BECAME AN ANGUISHED-FILLED T-REX OF RAGE” lady from that Guardian article. They’re so self-absorbed on their own needs and what they felt that THEY HAD TO DO that it’s cringe-worthy).

      ‘From the outside, I probably looked like a zombie. But that’s because nobody could see that as I walked, I was composing stories, inventing crazy space battles and peace brokering between fairies and mermaids and epic searches for dragons. I was having a grand old time, dangit!’

      I’m not an expert, but I think this made me realise how society expectations does impact the way people see kids (even kids on the spectrum). You know, kinda like the saying where ‘if rich man enjoys wine too much, people would say that he’s a gourmet. But if a poor man does the same, they’d call him a drunk.”. I’m pretty sure if a teacher told this mom that her son was ‘introverted’ and ‘contemplative’ (or if he was enrolled in a very old fashioned and high-class school that still valued 19th century standards of ‘children should be seen and not heard’), she wouldn’t have seen this behavior with horror. It also struck me as odd because I’ve seen teenagers do that, the only difference is that if they act ‘too cool for school’ (instead of clearly being imaginative) nobody looks at that twice.

      March 24, 2018
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      • Jemmy
        Jemmy

        Yes, some people will look to blame anything external rather than look at themselves to see what the real issue is. It’s easier to blame X as to why my life sucks rather than look at themselves and see the real problems. It’s really sad when they use their kids as the excuse. I know people who have had their parents tell them point blank they were never wanted, and their existence has ruined their parents’ lives. It’s horrible.

        March 24, 2018
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      • BloodyRose
        BloodyRose

        Oh, you’re right–My Son’s Tattoo Lady is EXACTLY like these moms. The thing that weirds me out is that their writing actually shows that they have INSIGHT into their own screwed-up emotions and coping mechanisms that are hurting themselves and others, but the insight never translates into trying to shift their point of view or change their behavior or do anything other than make those emotions into a blanket fort they can wallow in. “I realized my reaction was unreasonable and hurtful. Wow, what an insight! So anyway I kept doing it forever. The end.”

        March 25, 2018
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    • Alex Silvers
      Alex Silvers

      There is a moment in one of those miserable books where she describes how her son “compulsively circled the perimeter of a playground in the identical pattern over and over, oblivious to the other children, to the swings and slides, to the notion of play itself”,

      I am fairly certain I am not on the spectrum at all, but this is what I did too! Often with another person, but if no one wanted to walk with me I just did it by myself. Who says playing has to be with others or the approved play equipment? I can play just fine inside my own head!

      March 24, 2018
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    • NotMyRealName
      NotMyRealName

      “OH MY GOD, that sums up my recesses for most of elementary school. I would walk the track around the playground with a blank expression. From the outside, I probably looked like a zombie. But that’s because nobody could see that as I walked, I was composing stories, inventing crazy space battles and peace brokering between fairies and mermaids and epic searches for dragons. I was having a grand old time, dangit!”

      Um… are you me? This is so close to my own experiences at recess (walking around lost in my own daydreams) that it’s a little eerie. I’ve never known anyone else who did this. My anxiety (wasn’t diagnosed until I was an adult, but I definitely had the symptoms as a child) was often too severe for me to interact with other kids, and often my daydream world was more interesting than playing with other kids anyway. I wasn’t “oblivious to the notion of play; my play was just silent and entirely within my own head.

      March 26, 2018
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  13. autism anon
    autism anon

    even if someof those ‘autism moms’ are autistic themselves it still doesn’t excuse doing something like sharing intimate details…

    March 23, 2018
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  14. sheila
    sheila

    I was also told I can’t get an official diagnosis as an adult. I know this isn’t true, because I know people who have managed it, but I don’t know how? And I don’t trust my therapists, since they also diagnosed me as agoraphobic but never actually told me that

    Anyway, when I was little, kids only got diagnosed as autistic if they presented extremely severe symptoms (and living in a small, rural town and being on the poorer end, of course many of my symptoms were categorized as laziness, rudeness, “discipline problems”, etc, often with me not being clear on what it was I’d *done*).

    I don’t know if my life would’ve gone better if I’d had that childhood diagnosis or not. I might have been subject to things that wre just as ugly and stupid as what I went through anyway…but if I’d been diagnosed as a child, I’d be able to claim more disability now. And wouldn’t have wasted years of my life destroying my life because I knew there was something wrong with me, and everyone else knew it but no one would help or explain it to me.

    the “autism mommies” sound like mothers who are way too invested in getting attention through their children (or bitter because they were born too early to get proper care themselves?)

    March 23, 2018
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    • Dove
      Dove

      I was also told I can’t get an official diagnosis as an adult. I know this isn’t true, because I know people who have managed it, but I don’t know how? And I don’t trust my therapists, since they also diagnosed me as agoraphobic but never actually told me that

      I’d find a new therapist, someone who you can trust. Presumably, they’d be more willing to give you or otherwise find the necessary information, although it still sounds as if it might be difficult depending on your healthcare coverage (based on other comments in this thread.)

      March 24, 2018
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  15. KT
    KT

    Hey hey; I really appreciate you posting about this. It feels really encouraging to see someone like me not only make it as an author but also be happily married with a kid. It means a lot to me to see other people posting here about managing to start their own families, too. I’d really love to start my own family someday and be a successful writer. So it gives me hope, I guess I would say. It also makes me feel better, in some respects, about my childhood, because I’ve done a number of the same things. I also learned to get by because I studied other people. It definitely helped that I was a voracious consumer of TV, movies, books, etc. So, thanks; it makes me feel a little bit more normal, in my own way. ^_^

    March 23, 2018
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  16. Amanda
    Amanda

    I have a husband and a daughter who have both been diagnosed and I have suspected for years ( as does my husband) that I’m on the spectrum. Heck my GP agrees that I probably am. I took the test above and scored 183 points so….. yeah.

    I don’t know. I still feel like an impostor. I hate it.

    March 23, 2018
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  17. fluffy
    fluffy

    Thank you for sharing this. I have had a lot of similar feelings about my diagnosis of ADHD as an adult, which I self diagnosed first. Thank you for being as authentic as you are with us, but please also know that you can keep as much of yourself for yourself as you want. You don’t owe anything to us, the autistic community, or the internet at large.

    March 23, 2018
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  18. Anonymous
    Anonymous

    I appreciate you sharing your experience and perspective as always, Jenny.

    When my mother discovered I was exhibiting the signs of hyperlexia at the age of three, she had her boss (who was the head of Special Services at the school district where she was employed) run a battery of tests on me. If he discovered that I was autistic I don’t believe he ever told her, but I think he told her I was “special” and should be given opportunities which would enhance my development. I think maybe he tried to teach her how to manage by curiosity as a way of making sure I was at least somewhat normalized. It wasn’t until recently (I’m in my 50s now) that it finally dawned on me I’m on the spectrum. My son is not autistic but for a time he was friends with another boy who I am convinced is, but I believe his parents were trying so hard to “normalize” him that everyone else thought he was just a freak. We spent a day with him where I was alarmed by his behavior because I was not prepared for managing it, and understood that they either didn’t know or were in serious denial. And I thought long and hard about having a talk with them, but then decided not to because I didn’t want to be one of those parents who tells other people how to raise their kids. I still believe I was a coward for that, but that’s a decision I’m just going to have to live with. But I did have a horror of that whole self-diagnosed paradigm because of the negative associations. It does help me understand why people exhaust me, why I’ve exhibited echolalia all my life, why I live in my head, why I’m an obsessive researcher, why I have all these elements to my personality which other people considered to be quirks. And why I’ve felt like I’m on the outside all the time, like there’s a glass wall between me and everyone else, even my family. So I believe self-diagnosis can be a positive thing depending on the circumstance, but I am also suspicious of those people who feel the need to use up all the oxygen in the room, and self-diagnosis is one of their tactics. It’s a struggle to accept myself as myself, so I empathize deeply with your view on it.

    March 23, 2018
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  19. not officially diagnosed, mostly because i’m terrified they’ll take my kids away. i struggle with a lot of stuff and i doubt i’d be able to get any help with those things, so i just pretend to be normal and try not to give anyone reason to look at me twice. also the last 3 times i mentioned struggling with executive dysfunction and wondered if there was some sort of adhd or something going on, my mental health person brushed me off.

    also i don’t have gaydar. at all. though it took me til i was 25+ to figure out that i was queer, so…

    March 23, 2018
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    • also also if i hadn’t discovered it in myself first, there is no way in hell i would have realized my kid had it too. so now he gets the help he needs.

      and self diagnosing wasn’t just one instance of looking at symptoms and being all “hell yeah i’m autistic!” it was months and months of research, taking test after test after test, finding all kinds of scholarly articles and journals and doubting myself constantly.

      March 24, 2018
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  20. Raven
    Raven

    When I was a kid, I was diagnosed with ADHD. It wasn’t until I was twenty and had basically failed out of college that I finally started looking to see if maybe there was more to my struggles than that. I technically self-diagnosed myself, but I also got officially tested and diagnosed. My parents have been super supportive but I’ve had a hard time explaining to my mom why Autism Speak’s particular brand of “advocacy” upset me because I’m not so great at talking and explaining things when I’m upset. Maybe your post will help.

    March 23, 2018
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  21. It’s so nice to read about another child of the 80s that didn’t learn of their autism diagnosis until their children were diagnosed themselves! I always knew that I was different than other kids, but never understood why. I was quiet and just wanted to read and felt more comfortable with teachers than kids my own age. I can clearly remember all through school seeing other kids making these amazing friendships and relationships and I just couldn’t understand how they did it. I honestly believed that some part of me was broken. Now, I was lucky that I attended a small school and was never bullied for my differences- kids even acted protective of me because I was so naive and innocent to them. I was placed into gifted classes and had straight A’s with little work because of how my brain works with facts and memorization, but then I would go home and never have friends call or want to hang out. To this day I still have a certain amount of residual trauma-like(?) after effects from the years of thinking that somehow I didn’t deserve friends or relationships. I wasn’t cool enough or pretty enough… or whatever enough.

    I never received any type of therapy to help me fit in growing up. If I’m completely honest (and so many professionals HATE when I admit this) I learned how to appear neurotypical by watching A LOT of television, especially those campy, overacted shows of the 80s and 90s. From Full House to Dawson’s Creek, I could record and watch the same show repeatedly from different character’s POVs and see what appropriate reactions to situations were. I needed the overacted and overly emphasized scenes to really pick up on the details. I think that I was maybe a senior in high school before I was actually able to start putting my research (that began when I was 7 or 8) to use and I was in college before I had acquired the necessary acting skills to fool others into thinking I was just like them. I wasn’t, but I could fake it. By the time I graduated university I had even become so convincing that a friend finishing up his PhD in psychology didn’t know that I was autistic even though we regularly hung out at the time. He even introduced me to my husband. To be fair though, I didn’t know I was autistic either and honestly thought that everyone had to work as hard as I did/do to pass as neurotypical (a word I didn’t even know existed at the time).

    Fast forward a couple of years to the fateful day that a specialist in St. Louis broke the news to my husband and me that our 2 year old son had severe autism. I joked with the doctor that it’s lucky that he wasn’t asking the questions about my son of me because I’d answer similarly. When we were leaving it was suggested that I look into the possibility that I had it too. Maybe five years after that when I was 30, after needing time to accept the fact that my son was non-verbal and might always be, and after the birth of my daughter, I began therapy for postpartum depression and casually mentioned the conversation with the autism specialist. My therapist did some research and gave me the formal diagnosis (along with a few other ones that I had already known about).

    I finally had it. A piece of paper, stating what I had known for the previous five years. I had and will always have autism.

    I actually enjoy the looks on peoples faces when I tell them all of the little things that run through my head during a casual interaction with an neurotypical person when I want to “fit in”. From my posture to the way my legs are crossed to where I look as I speak… dozens of details garnered from a lifetime of observation and studying human psychology… Neurotypicals really don’t appreciate how easy their lives are that their minds are programmed to do all of these things innately (like breathing), freeing them to enjoy the social aspects of interactions instead of seeing them as a role you are playing. Most people don’t know the real me, they know one of several characters I’ve crafted for various social interactions. I can hardly turn them off now even though it’s exhausting to keep them up, even when friends insist that I just relax and be myself. There really should be a type of Oscars for autistics in a neurotypical setting…

    And, as for being able to recognize other autistics when you have autism… you definitely can. I’ve long said that I could diagnose someone better and quicker than a team of neurotypical specialists because, well- simply put, I can. The way that I like to explain it is that people give off different… vibrations. Neurotypical peoples brains vibrate on a certain frequency because of the sorts of connections they contain. Autistics, on the other hand, seem to vibrate on their own frequency because of having to work harder to function and survive in the social world we were born into. I truly believe that autistics, in a way, have a sort of innate realization of this frequency and can sense it in others. We’re so forced to be aware of everything about our own selves that when we pick up on that frequency from someone else, we’re put at ease in a way. I know that I’m only able to handle a couple of hours with a truly neurotypical person before I need a break to go and recharge by myself and I’ll have a sort of social hangover for a couple of days after such long interactions. But, I can spend an entire day with someone on the spectrum and never feel exhausted or bogged down for days after. Many times I’ll walk away feeling recharged and at peace. (which goes into my own unconventional thoughts about inclusion and education that aren’t important to this reply).

    But yeah… now that I’ve rambled on and on and probably lost sight of where I was intending to go with this reply… Yeah, I have autism too!

    March 23, 2018
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  22. Mike
    Mike

    For the record, when attempting to compliment food by saying it’s terrible, I learned a trick for this. Say ‘The food is terrible. I have to eat it all so you don’t have to.’ You can completely fail miserably to convey the appropriate tone but everyone will still know that you were paying a compliment. I know that’s not the same as learning to use the right tone but I’ve always gotten around tone situations like that by adjusting the wording so you may find it helpful, or not, I don’t know. It works for me anyway.

    I don’t have kids of my own, but it was the diagnosis of a child that triggered my own self-discovery. I googled and researched for hours out of curiosity. Upon doing this, I learned very quickly that a LOT of these symptoms were distressingly familiar.

    After a few of the more descriptive sites basically described my entire childhood, I started to look into it more and more. I had actually been told before that I should consider seeking a doctors opinion as I may be mildly autistic, but had always rejected that idea. I was just a little weird, that’s all! But seeing myself so clearly in these descriptions was distressing and unpleasant, and difficult to ignore. Like you, I sought out tests from reputable sources that ended with suggestions to seek out a medical professional because I showed many many MANY signs of autism.

    I did get formally diagnosed. Though honestly by the time I did it made exactly zero difference to my life except giving me the same sense of ‘well that explains a lot’ that you had. I wish I had been diagnosed as a kid, as I have the stomach/digestion issues and no one could ever figure out why I was living in constant agony as a kid (in fact I was often accused of faking or exaggerating) so I just sucked up the pain and experienced some pretty bad long term side effects because of it, but in terms of ideas on the table to explain that when I was a kid, autism was in an entirely different HOUSE. My parents still don’t even believe me.

    The diagnosis itself, given when I did get it I had already found coping mechanisms that make my life pretty manageable, is honestly only helpful to me personally in four different discussions; 1, autism in general and ones personal experiences with it, 2, surprising parents of autistic children with the fact that I’m autistic to prove a point about the fact that even if they struggle as kids it’s still possible for the less severe cases to grow up passing as relatively normal and the diagnosis isn’t some kind of social death sentence, 3, getting righteously pissed off at people who claim autism as an excuse for being a jackass, and 4, ‘I’m autistic and my life is just fine, but you seem to be saying that I’d have been better off if I’d died of the measles.’ which you have to say as dead serious (not angry) as absolutely possible. So basically it only matters when I want to get angry at other people giving autistic people a bad name, or when people are making it seem like autism is on par with cancer.

    Personally I don’t care if you’re self-diagnosed as long as you’re not using it as an excuse or a crutch. If you’re going around saying things like ‘well I’m autistic so I can get away with that’ then fuck you, you’re an asshole. But if you’re just self diagnosed because you didn’t have the option of going to a specialist or you’re struggling to come to terms with the idea and can’t handle the officialness of seeing a doctor, or if you just don’t see a point ‘cuz, I mean, what affect is it really going to have? Then that’s fine. If you’re using your diagnosis to understand yourself or your child better then more power to ya! If you’re using your diagnosis as a tool to get your way, then you suck.

    March 24, 2018
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  23. ViolettaD
    ViolettaD

    I shall put this in the most polite language I can:

    It is no one’s fucking business whether you go activist or not.

    You deal with your own or your family’s issues however works best for you. As for the card-carrying Autism Parents from Hell, they’re just a subset of other Parents from Hell, and there really isn’t much anyone can do about them unless there’s evidence they’re breaking the law, in which case by all means notify the police and/or CPS.

    March 24, 2018
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  24. Tez Miller
    Tez Miller

    Warning: talk of depression and self-diagnosis.

    Out of curiosity, I went to the blog post you mentioned in the comments: https://musingsofanaspie.com/2012/12/11/taking-the-raads-r-test/ The Aspergian Women United link didn’t come up with any test, so I instead went to https://aspietests.org/raads/index.php

    According to the results page, the total score of threshold values for suspected ASD is 65. My test results gave 133.

    I figure my lack of motivation to socialise (and sweating, shaking and crying when I do it) is due to my depression, diagnosed in 2003. I did do a test online before I told my general practitioner that I think I might have depression. I don’t feel it’s right for me to self-diagnose in general (I’m not an expert), but I might bring up the possibility at my next GP appointment or psychiatrist appointment. Because no one’s said “I think you should be tested for ASD”, I hadn’t considered it for me.

    Thank you for sharing this post, and thanks to everyone in the comments for sharing their experiences. I know some people don’t like labels, but my own labels for me give me stability, so I think I might request a test from a professional.

    March 24, 2018
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  25. RMH
    RMH

    Thank you Jenny, you said you feel raw, and this feels raw – in the best possible way. You are laying bare a really tender part of yourself, and I appreciate that you focused on yourself and not your family. Thank you for sharing. It’s the worth the wait for another entry in Blandbook for Bad Writers.

    March 24, 2018
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  26. Xebi
    Xebi

    Hi Jenny, this is a subject very close to my heart and in fact I was nodding all the way through your post because i have so many things in common with you when it comes to autism!

    I wrote about my experience in a blog post a few years ago, so you might want to take a look. https://thelittlethingsaddup.wordpress.com/2015/03/18/autism-its-not-a-disease/

    For the record, I’ve changed my views on one or two things since i wrote that and you can tell parts of it were influenced by my narcissistic mother co-opting my diagnosis, using it as an excuse for her own shitty behaviour yet never acknowledging that I might struggle with certain things because I was autistic. I was furious for a long time about that. (My first job was as a support worker for autistic people. I also worked in an assessment service for people with learning disabilities and I have a masters degree in Mental Health in Learning Disability with a strong focus on autism. I can say with confidence that my mother is NOT on the spectrum.)

    My brother’s autism overshadowed mine when we were growing up so I can’t blame my parents for not getting me diagnosed, but I had a very difficult and lonely childhood. I actually self diagnosed when I worked in the assessment service, because I had access to the clinical diagnostic tools that were in use at the time (I don’t think they’ve changed in the intervening decade). I came out way above threshold. When I told my supervisor (a clinical psychologist who specialised in autism) she said something like, “It wouldn’t be appropriate for me to diagnose you, but if another professional had diagnosed you as autistic I would not disagree with them.” It was awesome working with her because she understood why I found some things difficult and had no problem making adjustments. She encouraged me to get an official diagnosis from another professional.

    March 24, 2018
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  27. I don’t think self-diagnosis is necessarily a problem; so much depends on context. I think some people have questionable and self-serving motives to believe themselves autistic. And, much as it pains me to admit this, it is also possible that some people who are autistic and who’ve self-diagnosed are also jerks. None of that logically translates into the problem being with self-diagnosis of autism.

    Also, FWIW, here’s my own experience of the subject:

    When I was a child, my mother used to ‘joke’ – in that half-joking way in which you say stuff that you think might be serious – that I must be autistic. Of course, because this was in the ’70s, all the information about autism was about children rocking in corners and barely being able to talk or interact at all – you know the kind of thing. So, although I would have loved an explanation of why I seemed to be so different from other people and have such a hard time fitting in, I figured there was no way I could be autistic.

    As the years went by, gradually more information about the idea of autism being a spectrum became available, and I kept wondering whether this might apply to me after all. But there was still so little information available, and what I could read still didn’t seem to match me or my experiences.

    I went on struggling with my problems with social interaction, and the knock-on problems that came with that (years of bullying at school that hammered my confidence and ultimately came to a head in an episode of depression when I was 29; which, interestingly, was also self-diagnosed in retrospect, but I have no doubt at all that that’s what it was). I kept wishing I had a diagnosis, because that would make sense out of it all, validate my differences as a genuine problem and not my fault.

    Funnily enough, I dreamed about exactly the scenario you’ve described above; taking part in a study that was just meant to get information about how to test for autism, and then being told that I scored strongly in the autistic range. But I didn’t explore going to get a diagnosis; partly there was a part of me that felt I must be making a fuss about nothing, and partly I was worried that I’d be told I was making a fuss about nothing and was perfectly neurotypical, in which case I’d be left without any sort of explanation for my problems and for also feeling different.

    Then, when my son was three, he was diagnosed as autistic. And for me… that was it. That was my ‘OK, that explains it, I’m autistic too’ moment. I know that makes no logical sense; plenty of neurotypical parents have autistic children, so the fact that I had an autistic son proves nothing. I know it probably sounds narcissistic; why should my son’s diagnosis have anything to do with me? All I know is, this was the point at which my mind and my questions were finally set to rest. From that point on, I have felt confident that I am on the autistic spectrum. (This is how I see myself, rather than using the more specific label of ‘autistic’, which I still have slight doubts about having the right to use.)

    I’ve never, since then, felt any need to seek a formal diagnosis. I’m now comfortable with who and what I am. My mind works differently in ways that fall usefully into the category of ‘ASD’. I’ve learned ways to work with these differences and make them positive things. All that is good enough for me.

    March 24, 2018
    |Reply
  28. Also, a tangent:

    I read an online Twitter review and readthrough of the book in which the mother was planning to take legal charge of her son’s medical care and have him sterilised (I know the title of the book, but won’t say it in case you don’t want it mentioned), and I was absolutely horrified by the thought. What I really want to know is – would she have any sort of legal case for doing this? I don’t believe she would if she were in the UK, but this was in the US.

    March 24, 2018
    |Reply
    • MamaLich
      MamaLich

      Yup–had this woman been around 40 years ago, she would’ve been one of the many, many moms that lobotomised their own children (rather like Howard Dully, who was forcibly lobotomised because his stepmother considered him a ‘problem child’ (even though she went through several psychologists that kept telling her that there was nothing wrong with him. Instead of considering what experts were trying to tell her, she just kept looking for the one doctor that would do what she wanted).

      I honestly hope someone intervenes on that poor kid’s behalf.

      March 24, 2018
      |Reply
  29. Oatmeals
    Oatmeals

    I was totally in the same boat for a while trying to nail “this food is bad, jk,” jokes. The trick to the old “it’s awful don’t eat that,” is you need to add a “just give it all to me, I’ll take care of it for you,” I had trouble with a similar joke where you joke with someone who served the food that the meal was terrible when in actuality you really loved it. It only works if there’s an indicator that you already enjoyed the meal or if you’re making an attempt to get that food on your plate.

    March 24, 2018
    |Reply
  30. Jemmy
    Jemmy

    “I wondered why any of these “autism warrior mommies” couldn’t understand that their kids were people. That no tragedy had befallen their families. That they had never been guaranteed a neurotypical child, and that the idea of an autism “cure” was abhorrent when there were already constructive therapies and special education programs that could improve the quality of life for autistic people living in an unforgiving and aggressively neurotypical world. So much of their “activism” was performative and self-pitying. It was never about autistic people at all, but all the ways neurotypical people were burdened by the existence of them. Why couldn’t they see that?”

    This bit is the bit I think rules you out of being the wrong kind of self diagnosing person. Because you are a person, not just a mommy. I understand your concerns and that you have them is also a strong indicator that you’re not looking at an autism diagnosis as a form of attention seeking in my opinion.

    You don’t have to advocate for anything – self care is the most important thing you should focus on. You don’t owe anyone anything.

    I don’t consider myself an autism parent. I’m a parent of 2 kids, one of whom is autistic. My autistic kid isn’t a burden to be endured, he’s just a kid with all the usual things you have to deal with with kids.

    My mother was widowed at 34 with 3 kids, and when I asked how she managed she told me “you just manage, things have to be done and you do them”. That’s how I was raised, things had to be done whether you liked it or not and you did it, and you got through. My father dying when I was 6 also taught me that life doesn’t work out, you don’t get to have your fairytale ending. So I tend to go through life without expectations. That may put me in a different mindset to those mothers who are writing the awful memoirs.

    I might be autistic, but I feel I don’t meet the triad of impairments they list in the diagnosis. I raised it with my mother when my son was diagnosed and she said no. The last time we visited she was watching my boy and she looked at me and said “you were a lot like that as a child”. I’m like “yup, I know, I remember”. I score high on the online tests, and I was always the odd child that never fitted in. It would be nice to fit in somewhere finally, but I also don’t want to lay claim to something that isn’t true.

    I hope you find peace with your family stuff. Family is hard.

    March 24, 2018
    |Reply
  31. ThrowingAway
    ThrowingAway

    Throwaway name since I don’t want to discuss this under my usual handle.
    I have the cool two-fer where I’m formally diagnosed and the child of an abusive parent who is self-diagnosed (but does genuinely meet the criteria). For what it’s worth, I have no problem with self-diagnosis. People know themselves better than I do and if they’re serious enough to share with me, they’re serious enough to have done their homework. People who are wrong take no formal resources away from us and manipulators show other warning signs.
    I am deeply sorry that you’re having such doubts about your childhood. My diagnosis was used against me to keep me in line and it’s not something I would wish on anything else. I hope you’re able to eventually reconcile what you now know with what you remember from then, and find a little peace. I’m in your corner.

    March 24, 2018
    |Reply
    • ThrowingAway
      ThrowingAway

      …anyone. ANYONE else. That’s a pretty important connotation there!

      March 24, 2018
      |Reply
  32. ViolettaD
    ViolettaD

    OT: Jenny, I haven’t been getting any notifications of new posts or new comments in my email. When I posted here, I didn’t get the usual request to Confirm subscription. Is this the result of:
    A. A malfunction in my email? For half a day I wasn’t getting any emails at all, I was somehow migrated to their latest version and had to change settings to get Classic back, and when I did a search, others were complaining about Yahoo the same day;
    B. Unwittingly breaking a rule of the TroutVerse? Mea culpa!
    C. Cathy smelling that someone she’d never met didn’t worship her as Complete Strangers are obliged to do, and putting a hex on me? In which case, oh shiiiiiiiit….

    March 24, 2018
    |Reply
  33. Jae
    Jae

    I’m pretty sure that I’m somewhere on the spectrum, but personal experiences have made me a little disinterested in an actual diagnosis. I’m aware of my quirks, I work with them, I cope when I can’t. Mom snowing a pediatric neurologist into thinking I was in single digits, when I was actually old enough to vote, put the kibosh on that. She meant well, but… no.

    I’m leery about self-diagnosis, but only because for a brief time it seemed almost… fashionable, the way some people breezily claim to be OCD or ADD. Obviously, some things have changed since I first looked into the diagnostic criteria many years ago. Back then, the list could fit on an index card. Still, I worry about finding the line between useful diagnosis and hypochondria.

    Regarding the gaydar thing, us trans folk have something like it, but I don’t think the concepts map perfectly to each other. I’d have kept the T in, but erasure is one of my bugbears, and I appreciated the note at the end. No complaints or call-outs from me. 🙂

    March 24, 2018
    |Reply
  34. Rebecca
    Rebecca

    As a mother of a child with autism the fact that’ someone actually put into print those thoughts of wishing that they didn’t have to deal with their child is absolutely deplorable. It is not easy being a parent. End of story. Sometimes my child with autism makes me want to pull my hair out but he is also the one that will seek me out to spend time together. He gives me higher highs and lower lows and I love that about him. My other son can frustrate me just as much at times, just not as frequently. He also doesn’t need me as much which means we don’t cuddle as often. Each relationship with a child is different and wonderful.
    I would also like to add a fourth category of parents. Those who are accepting the diagnosis, have included only immediate family and others involved in his care, and are just trying to work out what is best for their individual child. I have not scoured the Internet because so much of what I have read is not helpful. I have even heard bad things about autism speaks. I will not share my child’s diagnosis for two reasons. The first is it’s his life and other people don’t need to know his business. The second is that I am not prepared for the judgement and sympathy that can come with this diagnosis. The exception being other parents of children diagnosed with similar functioning levels. They get it and don’t judge.

    March 24, 2018
    |Reply
  35. Nolittletoes
    Nolittletoes

    I read this blog all the time but this is the first post that has compelled me to comment.

    “I wondered why any of these ‘autism warrior mommies’ couldn’t understand that their kids were people. That no tragedy had befallen their families. That they had never been guaranteed a neurotypical child…”

    I feel a bit of culture shock when I read this. I grew up peripheral to the disabilities community because I had a very mild deformity/disability. And when I went to college, and after I left college, I worked in disabilities services. This was in what is today considered part of Silicon Valley. I worked for private families, non-profits and my university as everything from a special needs nanny, to an overnight relief care provider, to a reader.

    This was right at the time when the community turned to the spectrum model of autism. Prior to this, there really were no high functioning individuals who we considered autistic. Autistic was a severe diagnosis. The adolescents and adults that I knew who had Autism had never spoken a whole word. One hardly knew what they knew. The ethical conversations we had about the kids my friends worked with (I never worked with any children who were diagnosed autistic myself, only with children diagnosed with Asperger’s) were about whether saving them from some of their most self destructive compulsions (like layering) was a form of physical torture.

    Then everything changed overnight. The spectrum model was imposed. At the time, the general consensus among my bosses and the university’s faculty was that there was no such thing as an Autism spectrum. That there was no scientific reason to believe that whatever was happening in the minds of people formerly diagnosed with Asperger’s had anything to do with what was happening in the minds of people diagnosed with Autism. But, there were also a lot of people who said that we couldn’t even be sure whether autism was it’s own disorder. I knew one professor who said, and this always made sense to me, that he suspected that there were as many forms of severe autism as cancer. And that, like cancer, they probably had totally different etiologies. That ultimately, they weren’t really the same condition at all. But at the same time there also seemed to be a general consensus that the spectrum model was unavoidable, and that it would increase visibility and funding.

    All of which is to say that I just have a hard time wrapping my head around the idea that the struggle for disability rights is a struggle towards acceptance of neurodiversity. I just don’t know what that does for people who fit the old school model of autism, or their families.

    On a totally different note:

    The parents that I can’t stand are the ones whose version of disabilities rights activism is fighting tooth and nail to preserve their sons’ (it’s usually the sons’) class privilege. I’m talking about the mommies and daddies who believe that their sons aren’t being accommodated if they aren’t allowed to achieve every marker of upper class success: a college degree, a girlfriend, a wife (notice how women become consumable property), a white collar job. These parents are the reason that ADHD and Autism and PTSD etc. etc. are underdiagnosed and undertreated in girls, women, men of color, poor people etc.

    I think that some of the Autism Warrior Mommies are these mommies. What they’re fighting against is the outside chance that their children’s diagnosis will compromise the “natural” passing down of wealth and property from their generation to the next.

    March 24, 2018
    |Reply
    • Not Kyle
      Not Kyle

      “All of which is to say that I just have a hard time wrapping my head around the idea that the struggle for disability rights is a struggle towards acceptance of neurodiversity. I just don’t know what that does for people who fit the old school model of autism, or their families.”

      Because expanding tolerance for neurodiversity can help people figure out ways to communicate. Both in the sense of helping them figure out how to communicate and helping people figure out how to communicate with them. I’ve encountered an uncomfortable number of people who assume nonverbal people can’t understand them or are completely incapable of speaking. Educating people so that they don’t assume being unresponsive is the same as not listening might not fix anything but it can improve things.

      That paragraph also reads like you aren’t sure what the point of activism is if it doesn’t do something for the entire community at all times. Am I misreading that? If something helps more than half a group most of the time it’s off topic? People with less severe cases of autism were disabled before the shift in diagnostic criteria and are still disabled now. We weren’t being served before so were attempts to help more severe cases before we were diagnosed wrong somehow because they didn’t help us?

      Acceptance gets us little things but little things can add up. A greater understanding of neurodiversity can help the mother of a man having a meltdown in a store by giving clerks an idea of how to help her. We are working to create an atmosphere where we aren’t going to be asked to apologize for existing. A lot of us find it more difficult to function when stressed. The things I’ve seen about research into people who have greater difficulties than I have suggests that they have a similar reaction to stress. Acceptance can decrease that stress by making us seem less threatening to neurotypicals. When they aren’t threatened, they’re less stressful to be around.

      I used to work for an autism support small business. There are a lot of people who benefit from wider education and acceptance. Greater acceptance would have helped me because I grew up with a parent who punished me for my very harmless stimming out of a belief that if I could hide it, my life would be easier. The message “stop yelling at your autistic child for not speaking to you, you’re only scaring them” seems like something that would benefit everyone on the spectrum and their families.

      March 25, 2018
      |Reply
  36. Trudy
    Trudy

    I have always known I was ‘different’ to other people growing up. I never knew what it was, and I did well in school and was normal enough to pass as neurotypical, mainly by closely watching others until I was sure I knew the ‘rules’. In situations where I hadn’t had a chance to observe, I was lost, but most people just thought I was shy. I got severely depressed in my teen years but hid it from everyone, unable to understand what was wrong with me, thinking I must be evil, trying to still present as ‘normal’. I had this thing I kept thinking, that somehow everyone else knew what was wrong with me, but nobody was telling me. My escape, and at the same time my window to the world, was books. I always had my head buried in a book. Many of my lightbulb moments ‘So that’s why people do that!’ came from reading it in a book. If I read it, then I could see it in people’s behaviour. Otherwise I was completely blind to most social cues, just trying not to stuff up too badly. I was always the one who would say something completely off in social situations, so I just stopped saying much at all. I would be the one who was always screwing up my eyes in outdoor photos, because I can’t open my eyes in sunlight. I was the one who would curl up in a ball, holding my ears, if there was a loud noise. I was the kid who obsessively collected business cards, pens, coloured serviettes, and wrote out lists and lists – of anything. It could be a biological list of all mammal species or a list of the constellations or anything really, I just loved having things listed in tidy columns. I was the kid who had to do things exactly the same way every day. If anything changed without warning, or my parents tried to get me to change anything, tantrums would follow. When you can’t pick up cues from around you, you need to keep everything the same or it feels as though chaos will ensue. I was the kid who was quiet and reserved but would inexplicably and uncharacteristically (to other people) suddenly lash out, turning into a screaming demon, unable to think of anything else but some perceived injustice, or just frustrated at what I saw as other people’s complete lack of logic.

    It was in a book that I first read about autism and immediately recognised myself in it. It was a book written about a ‘classically’ non-verbal autistic child. The main thing that jumped out at me was the lack of eye contact, which is something I really struggle with. But I pushed it out of my head, reasoning that I couldn’t be autistic. I could talk, did well at school, etc. But it never went away, and when I found out about Asperger’s, I knew I had found my diagnosis. I did a million tests online, always hoping they would actually come back negative and I could continue to deny that I was autistic. They all came back overwhelmingly pointing to autism.

    I sat on it for about 2 years, not telling anyone, and then I decided I had to know one way or the other. So I booked an appointment with a specialist in autism for a diagnosis. All her tests came back pointing to Asperger’s, she just needed to speak to someone else to triangulate the findings and confirm the diagnosis. This meant she needed to speak to someone who had known me for a long time, to confirm the answers I had given her. Which meant I had to tell my mother, and it was one of the hardest conversations I have ever had. She cried, which hurt me more than anything else. I wanted to say to her ‘I’m still the same child you thought I was 10 minutes ago!’ but I didn’t have the words right then. She took a while to accept the diagnosis, but finally she went and spoke to the therapist, and I was given an official diagnosis of Asperger’s at age 28. The therapist later told me that she had known as soon as I walked in that I was likely autistic. That shook me a bit, as I had always thought I hid it fairly well. But I have never been so nervous at an appointment before, which brings out my autistic tendencies more.

    After I was diagnosed I told the rest of my family, and my immediate circle. My initial reaction was one of relief, that I finally knew what was ‘wrong’ with me, and I wanted to tell everyone. Mum cautioned me to hold back a bit, and I’m glad she did, as some people can judge you unfairly by such a diagnosis, if they don’t know you well. I don’t tell anyone I’ve just met that I am autistic for this reason, as I have found they judge you by this, and not anything else. Mum has never really come to grips with my diagnosis either. She kept telling me ‘If you just go out and talk to people more, you’ll be fine!’ I’ve tried telling her it doesn’t work like that. She has always been a wonderful mother to me, so I don’t judge her for it, I just try to understand. Because I can function fairly well, I think she just chooses to ignore my diagnosis. She never wants to discuss it. I am pretty sure that my father and one of my brothers are also on the spectrum, but they refuse to talk about it.

    After my initial reaction of relief that I had a diagnosis, I became depressed again. Having a diagnosis of ‘autism’ seemed so final, it wasn’t something that could be treated with medication or something I would grow out of. I would be dealing with this for the rest of my life. I started binge reading any autism ‘help’ books I could get my hands on, hoping for some magic solution that would make me normal. The one that helped me the most, was a book I came across called ‘Autism in the Workplace’. Instead of listing all the things that were wrong with autistic people and how you could ‘cure’ or help them, it listed all the strengths that autistic people have over others in the workplace. And it made me look at my autism in a completely new light. Instead of hating it and hating myself for being autistic, I started seeing that it was an integral part of who I am, and that there were things I did well because I am autistic. It hasn’t been an overnight shift, but now I can embrace autism as part of my identity. There are still some days when things seem too hard, and I start thinking ‘Why me?’ but they are not as often as they used to be. And I have found that knowing my weaknesses as an autistic person helps me to work on overcoming them better, not to ‘cure’ my autism, but just to function better as a human being. I am still hopeless with social situations, but I can plan them better now, knowing my weaknesses. I also came across the ‘Spoon Theory’ in my researches, which I found really helpful. https://en.wikipedia.org/wiki/Spoon_theory. This really helped me to realise that I could pull back if I was feeling overwhelmed or just burnt out, and it wasn’t a shameful thing. It also helps me to plan my days better, so I don’t get burnt out, and I’m better at taking breaks if I feel I need them.

    About having austimdar – I believe you can tell. In fact (and I hope this isn’t offensive), I already presumed you were autistic, although I don’t know if I have ever ready anything before where you have discussed it or not. But I just find that I can pick up when people are autistic. There is a certain way of thinking or something, it’s hard to explain.

    March 24, 2018
    |Reply
    • Trudy
      Trudy

      I also meant to add, one of the best tests I found when I was first trying to work out if I was autistic is at http://www.aqtest.net.

      March 24, 2018
      |Reply
  37. A
    A

    I’ll de-lurk for this, though damn if I know what my point is. I’m high-functioning autistic (or Asperger’s Syndrome, according to some people. The opinions and delineations shift and blur so much I gave up and just tell people I’m autistic if it comes up), and I was diagnosed formally. AND I’m ADHD. As I got older, the behavioral aspects of the ADHD got easier to control, but I still have the mental traits of…well, hyper-focus and bouncing around from one topic to another. But as a kid? Heck yeah, I bounced off walls, too.

    The autism is a lot harder to manage. I can’t read body language in any conscious way, and something strikes people as ‘off’ and they tend to react negatively towards me. I was raised (and still live) in the country where I was the only person around my age–so I didn’t have peers outside of school, so I never got a chance to do the socializing things. Churches weren’t really a thing in my life, for better or for worse. So social isolation means I’m in my early thirties and only had one semi-serious girlfriend, almost ten years ago.

    I have a BIT of a problem with self-diagnosis, but only so far as this: I think if you suspect, you need to check. Just to be sure and find out for certain. That, however, is mainly due to people who self-diagnose and then try to use it as a ‘get out of self-improvement free’ card. I’ve struggled against this for twenty years to get to a point where I can fake normal enough to hold a conversation with people, and desperately try to improve my own faults and correct errors in my thinking when I find them, so I take a dim view of a Certain Type of Person.

    There’s a lot more I could say–mostly agonizing about my own painful experiences and ongoing struggles, but I’ll spare you all the details unless someone really wants dig in, for their own interest or for the sharing–just this once, here, in this place, I’ll tell it all. And while I’m at it, I also have an ADHD Talk I give to adults to have to handle kids with ADHD.

    March 25, 2018
    |Reply
    • ViolettaD
      ViolettaD

      I would like to hear your talk. I don’t know how many times teachers gave me the “You could pay attention if you WANTED to!” routine, even as they piled on more and more distraction in those Projects they loved so much. They even acknowledged I didn’t “act like this is Mrs. So-and-So’s class,” disregarding the fact that Mrs. So-and-So ran an old-fashioned class where you memorized a procedure and did a drill on it, and kept your mouth shut unless the teacher called on you–in other words, the sort of 19th-century education another post referred to, which works pretty well for those of us who are not neurotypical. So help me, even if I hadn’t done anything, and some neurotypicals had, some teachers would give ME a hard time for my “attitude”–I wasn’t thinking Happy Thoughts, or something.

      March 25, 2018
      |Reply
      • A
        A

        It wasn’t so much the teachers, it was the parents. I found school interesting–learning new stuff appealed. But I was really bad at homework (and I’m still really bad at maintenance-style tasks) while being able to soak up and remember stuff. That got me through high school with a 3.01 GPA, but I made a 30 on the ACT and got a scholarship to college where I found out I didn’t know how to study. Trying to do a physics class? I’d study and study and then bomb on the test. I made it three-quarters through a geology degree and then just couldn’t handle the math despite what I tried.

        Anyways. So here’s the ADHD talk:

        Dear Normal People,

        We’re not trying to screw with you or be lazy, we’re just unable to concentrate and focus like other people do. Whatever filter there is in a normal brain that edits out extraneous stuff, an ADHD person doesn’t have. Everything on the mind is given immediate and full consideration and attention, but there’s not much choosing what’s on my mind. I can space out thinking about the intricacies of a floor buffer or something I noticed on a reread of Terry Pratchett and lose time.

        (Incidentally, I have a very poor sense of time passing. It’s very elastic for me. So in my job as a janitor, I try to get stuff done as quickly as possible because I know there’s a real possibility I might not finish up if I don’t get it done. Boy howdy, let me tell you, doing stuff in two hours that takes everyone else three–and having it done RIGHT–is not a way to make friends in the workplace. They think I’m trying to be in charge.)

        ADHD people, when distracted (more or less always), or when unsure of what’s going on (often) will follow directions literally and perform exactly what’s told and not a bit more and go back to what we were doing/what we want to do. It’s not laziness, it’s just fulfilling directions. I used to get in arguments with my mom because she’d tell me to unload the dish washer, but I wouldn’t load anything in the sink (because she didn’t tell me to and I didn’t think about it). This led to great joy when I was attempting to learn to drive and my dad (who’s barely literate and has worked a lot of blue-collar jobs in his life. I’m not saying he’s stupid, anyone who can do math in his head that quickly isn’t dumb–working around lumber for twenty years sharpened an already present talent but his phrasing is often idiosyncratic because he has to struggle to read and he’s worked around a lot of other people in similar situations.) I remember once we were coming to a branch in the road in the country. Like a somewhat off-center Y, the paved road curved to the right while straight ahead, at the start of the curve, a dirt road was. Dad told me to go straight, and then began to shout when I went onto the dirt road. “Straight means ‘STAY ON THE ROAD YOU’RE ON!” and all I could do was shout back “SO STRAIGHT DOESN’T MEAN STRAIGHT! WHAT KIND OF SENSE IS THAT?”

        Anyways, point is, if you’re telling an ADHD kid (and to some degree an adult) to do stuff, they’re going to follow directions exactly. You have to be specific. If you tell them to rake leaves, and you want them bagged up, you have to tell them to bag them up, too, or they’ll leave a big pile in the yard–at least until they’ve done it enough to establish a routine. Instructions are best remembered and obeyed if you tell them the reason WHY you want something done that way–bagging up the leaves to put them in a flower bed or the compost pile, for example–they’re going to do that.

        It’s not a universal trait, but when I’m distracted I tend towards answering questions directly and honestly–I know some ADHD kids who tend towards the same way. Well, if you ever want an honest answer out of an ADHD kid, get them working on something busy–like raking leaves or pulling weeds, and work beside them. Give them long enough to get into the task, and focused on it. Make it sound casual. Odds are we will hear the question, and divert the minimum amount of brainpower needed to answer it–and telling the truth’s easier than lying. If they freeze up or have a hitch in what they’re doing, they have to think about it.

        So yeah. There. That’s the two main things I can tell parents and teachers and anyone else who has to deal with an ADHD kid. 1) Tell them what you want and why 2) Distractions, man.

        March 25, 2018
        |Reply
        • ViolettaD
          ViolettaD

          I took one of the tests here, and scored higher than normal but not Aspie. I had tested Hyper when I was 9 (this was before they started talking about Attention Deficit Disorders), and was an early pioneer on Dexies (before Ritalin and Adderall). I suspect, as others have posted, many if not all of these diagnoses are umbrella terms for a variety of neurological anomalies. Unfortunately, society likes One Size Fits All, and that goes for treatment as well as causation. They can’t bear the notion that people may have to try a number of techniques to find the ones or the combination that helps them or their loved ones negotiate the world successfully. Since I was Hyperbole, teachers tried to slow me down by speaking Veeeerrrrrry Slowwwwlllyyyy, which meant that by the time they reached the end of the paragraph, I hadn’t the slightest idea what the beginning had been, not that I was terribly interested. It just made it harder to focus, so before long I gave up and stopped listening altogether.

          Personally, I found I got best results for concentration by blasting punk when I did my research. I probably wouldn’t have been able to finish my dissertation without non-stop Ramones during the last round of revision. On the other hand, I knew a grad student whose ADD required dead silence, which she found at the law library at odd hours.

          March 27, 2018
          |Reply
          • ViolettaD
            ViolettaD

            Since I was HYPER. @#$&you, Spellcheck!

            March 27, 2018
  38. Saint_Sithney
    Saint_Sithney

    I think the most important distinction in self-diagnosis of autism is “Is this diagnosis a cane or a bludgeon?”. Even if you haven’t been to the doctor to diagnose a twisted ankle, no one decent will be bothered by your use of a cane to make life easier. Similarly, most people who self-diagnose as a cane are doing it to find the necessary accommodations to live their lives. It explains some of the behaviors that other people may find rude or bothersome and asks for a level of understanding and helpfulness.

    The other class are the bludgeons. They are carrying a cane, but instead of using it to make their lives and accessibility needs easier, they are using it to hit people and claim that it’s the fault of the people they hit. They use their self-diagnosis as a bully pulpit – not asking for understanding, but demanding catering. They are fiercely proud of the idea that they have an “excuse” for all of their negative and anti-social behavior, and calling them out on it is prejudice.

    Most of my autistic friends are self-diagnosed. One friend, after her son was diagnosed, realized that pretty much her husband’s entire family is on the spectrum. Another friend was able to make peace with behaviors she hadn’t understood for years, while another was able to become more pro-active about their accommodation needs and get into a much better headspace. There’s one self-diagnosed person I know that always makes me roll my eyes, because their “autism” is brought up exclusively as an excuse (I grew up with her – I have more symptoms of autism, and I’m 90% sure I’m neurotypical). She doesn’t want to understand and she doesn’t want accommodation. She wants everyone to behave exactly the way that she wants, and when they don’t, she gets angry.

    Now, there are definitely autistic people who use the bludgeon, since disability certainly doesn’t mean you’re automatically a good person. It’s a generalization. But it’s one that I’ve found to be generally consistent. I don’t think people should be ashamed to self-diagnose, especially since our knowledge of autism is so comparatively recent and our understanding so slim.

    March 25, 2018
    |Reply
    • mimi
      mimi

      I found this to be a very helpful metaphor.

      March 26, 2018
      |Reply
  39. Jessica
    Jessica

    I took that same online test and got roughly the same results as you. It was a surprise but it also wasn’t. And I have no idea what to do with this information. I have a son diagnosed autistic and a son diagnosed ADHD that his therapist has said has some indications that he has what used to be Asperger’s, and I know what to do with their diagnoses: therapy, IEPs, accommodations. But I have no idea what I’m supposed to do with my results. Like you said, the knowledge doesn’t particularly impact my life in a tangible way, but it is a bit of a shock. I suspect my scores were lower than they would have been if I’d taken it as a child because now I have decades of experience learning how to act like NT people. So I guess I just keep doing what I’ve been doing? It’s definitely a bit of an at sea feeling.

    March 25, 2018
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  40. Aria
    Aria

    I’ve never commented here before but feel like I have to after reading this post. I’m professionally diagnosed with autism, and the story you shared from your childhood (your uncle getting mad for reasons you couldn’t understand) sums up EXACTLY what it’s like for me (and sounds similar to lots of others I know). Whether or not you technically meet criteria, there is some element, some aspect of the autistic experience which you clearly share.

    Thank you, too, for pointing out the hypocrisy and shitty behavior of the autism warrior types. IMO, their behavior isn’t activism; it’s what we should be activist against. The tokenizing, dehumanizing, oversharing, and supplanting the real voices of autistic people is horrifying.

    March 25, 2018
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  41. Topaz
    Topaz

    First time commenter, honestly I haven’t been reading your site all that long but my first thought was “oh that makes sense.” Especially even in the context of this post, your approach to “maybe I’m autistic” is one of intense and revealing self-evaluation, not blithe acceptance or hypocritical defensiveness. It’s as if you’re obligated to stick to the truth, even if the truth is uncomfortable or difficult or better off unsaid. And this is something I run into a lot in myself and other autistic people I know; my best friend has a lot more experience than I do in editing her social approach to keep from being too open, and it shows. And naturally I’m afraid this is coming off critical, but I’m only trying to say that intense transparency is an autism hallmark as far as I know.

    And so are patterns. So when you see a mother who deeply loves her autistic child and works hard to support them, and she comes forward saying she’s autistic, you already know she’s coming forward in good faith even if she turns out to be wrong. But if you see a mother who abuses her autistic child, fails to understand them, and uses them to gain status or pity, and SHE comes forward claiming to be autistic, then chances are she’s doing it in bad faith even if she’s RIGHT. Whether she’s autistic or not, she’s going to use that status to harm her child and others, and you’re right to be wary of that regardless. Autism is not a free pass to be a selfish, entitled prick, and people who pretend it is are actively making the world a harder place for autistic people to live in.

    (That said I agree that autismdar exists, and I think it’s probably also caught up in patterns and approaches that come from similar cognitive processes that are easier to unconsciously recognize than explain.)

    Anyhoo, congrats on making those connections! My realization made a lifetime of sense and I’m really happy you’re able to explain a lot of things to yourself now, even if that comes at a price. All the best in figuring it out.

    March 25, 2018
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  42. Maaike
    Maaike

    I am diagnosed with Aspergers (I am female). My brother has Aspergers too, and my sister is diagnosed with PDDNOS (I am not sure if that is the same in english, but it means she’s on the autistic spectrum but it’s not classic autism or Aspergers). My dad does not have a diagnosis but he’s exactly my brother so it’s impossible to deny by anyone but him.

    I just took the test you have done, you provided the link in the comments somewhere so I think it’s the same one, and it frustrates me. There is no nuance to this test. For example this statement: I like to spend time with family and friends. (Or something like that). In my case there is no right answer: I like to do that, but not too often, and I can do without. I like to do it in specific circumstances. I cannot answer: sometimes. It is important to me. So I say true now and as a child, but it feels like a lie. There are many others like that, I have to answer something, but it feels like a lie. I miss the options for sometimes, regularly, often, always.

    Another example from the test: I like to be hugged.
    This is difficult to answer: I’m not averse to a hug from by boyfriend. Hugs are nice, I’d actually like some more hugs from him to be honest. But not when I’m doing something. Or when I’m upset. Or when I’m in pain (don’t touch me at all please). Or as a greeting. Definitely not by people who aren’t my family or my boyfriend. So what is the answer?

    I hate being hugged when it’s relatively common to be hugged so bad that I want to push the hugger and run away and hide. When my sister had gallstones and she was in the ER screaming from the pain, I left the room for a moment to cry and get my shit together. I knew she wasn’t dying: she was getting medication for the pain, she would have surgery and it would be fine. But it was viscerally upsetting to hear her scream in pain and nothing could help her feel better until the morphine kicked in. It’s such a primal emotion and it felt like I was going to fall apart unless I isolated myself somewhere. An ER nurse came to me and asked why I was crying, ‘you know she’s not in danger right?’, and hugged me in order to comfort me. I’ve never felt more claustrophobic and had to struggle to politely say: ‘Please don’t touch me, I don’t like being touched.’ If it had been just two years earlier I’d have slapped him or pushed him just to get away from the touch.

    I had the same troubles with the big test you do when you go to a therapist. I forgot the name, sorry, but it’s the very long test with many of the same questions but phrased differently, and the score has to be interpreted by a professional. The score apparantly shows if you’re lying or being inconsistent. I hope that anyone knows what I’m talking about. Anyway, when things are phrased differently, it feels different and I feel like I’ll answer differently to the same sort of question, and I’ll worry that I’ve lied earlier or that I’m lying now and it just hurts my brain.

    Reading back I’m not sure what exactly my point is and it reads kind of like thought salad, but whatever. Maybe it is very autistic of me to have so much trouble with completing a simple online test. But it really hurts my brain and I have to force myself to complete the thing.

    I have a lot of trouble with feeling like I’m lying in social situations too. And that leads to being rude. An example from my teenage years: I had been talking with my friend during French class. The teacher called me out on it and told me to stay after class. I was super embarrassed (he was very intimidating and I’m of course very shy and do not like to be the center of attention). After class he asked me what I thought of the situation. He probably wanted me to answer that he was justified or that I deserved it or that I shouldn’t have been talking (all true), but my honest feeling was mortification at being called out and suddenly being the center of attention. So I said I felt humiliated.

    The wrong word of course, the word is embarrassed, but at the time the distinction was not clear to me. He did not purposely humiliate me: he disciplined a student who was disrupting the class.

    He was furious, dragged me to a head teacher (I honestly do not know what the english equivalent is, but I hope you understand it nonetheless), and demanded that I tell her why I thought he humiliated me. This of course just made me cry and beg them not to tell my parents, because I didn’t know wtf I did wrong and I was in trouble for it.

    Nowadays I think I’m a lot better at giving the answers that are appropriate, but it’s a struggle. Sometimes I feel like I am an alien that’s taken over a human body and needs to remember what humans do in this situation. Sometimes so bad that I literally think to myself:

    ‘What is the human thing to do here? This is the moment that I say something. What do I do with my hands? Thouch shoulder? Grab hand? Rub arm? Oh god I’m not saying anything, what is the right response? I’m supposed to have a response.’

    And I’m not saying anything, and I don’t know how to correct the situation, I can’t think of anything to say or do but stare. I’m stuck. I’ve shut down.
    Luckily this doesn’t happen as much now, it usually happens when I’m feeling bad over a long period of time, and my life is better now, and I can cope with bad things happening better.

    I’m just reading this back and I really don’t know what my point is. Just sharing some frustrations and experiences. I hope someone can relate. Other commenters have said helpful and insightful things concering self-diagnosis, I can only say that I’d concluded I was autistic some years befor I got a diagnosis. And if you suspect someting, an autist in your immediate family is a pretty good sign that it might be true. Though the selfdoubt I can relate to, even after my diagnosis I keep doubting. It’s sort of like imposter syndrome.

    March 26, 2018
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    • Mike
      Mike

      A lot of the time when I read other people’s experiences with being on the spectrum I see a lot of my quirks in them, like walking on my toes, and echolalia. I see my inability to understand why telling someone a harsh truth wouldn’t be well received and my frustration at being misunderstood.

      With your post I see my actual experiences. The frustration at trying to fill out those tests, feeling like a liar when I can’t communicate my meaning sufficiently, the horror over being hugged by strangers and the progression of being able to change from actively recoiling and physically reacting to being able to tell people to back off, the pain of watching obvious signs of pain… Most importantly though you describe it the same way I used to, that it’s not uncommon to feel like an alien trying to pretend to be human and not quite being able to figure out how…

      Even your talk about not being sure what your point is and constantly being unsure whether or not you’ve properly communicated your point is viscerally familiar. I’ve always felt a sense of relief when someone else understood what I was saying or said they felt similarly because it made me feel less alone and like I had succeeded in communicating properly, so in the event you share that experience too, I just wanted to say that I share your experiences and really understood what you were saying.

      And for the record I think ‘head teacher’ would probably be ‘principal’ for most people here. Or ‘head master’.

      March 26, 2018
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  43. Eneya
    Eneya

    Oooh, the “I plan to streilise my kid” book. Yeeah, I remember that one. I read it somewhat by chance (I got it confused with another book) and realised I got the wrong book… around page 2 really. There is something horrible about these women who want to present motherhood as martyrdom, their kids as burdens and autism and autistic people as mistakes that need to be “corrected”. I have no idea who and why reads these books, I literally don’t know people who think like that or approve of such behaviour. Yet, it is a whole genre…

    March 26, 2018
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  44. Trudy
    Trudy

    Me too! Actually, you’ve said what I wanted to say in a much better way than I could. ‘Thought salad’ is a common happening! And the relief when someone actually understands.

    March 26, 2018
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  45. Doedee
    Doedee

    It doesn’t help to overthink that, without input from a therapist.
    Last year I spent over 6 hours answering tests just about panic. It was part of a psychological study. After that I visited a therapist for two months and just then he gaves me a diagnos. (It’s bad, but he makes sure that I don’t lose my last hope)
    Some things shouldn’t be selfdiagnosed, because our friends and we ourself see us different.
    You are spending now so much time analysing yourbehavior and past, that you might forget something or put to much weight in it.

    March 27, 2018
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  46. Kristyle Solomon
    Kristyle Solomon

    If you are unfamiliar with the history of Autism or the current state of medical practice in this area (and you clearly are based on this comment, even if you think you aren’t), then comments such as these are unhelpful. This is an area where even the vast majority of “experts” get it very wrong, and so the advice to listen to people and second-guess yourself can do more harm than good.

    There are people who decide they are autistic because they’ve decided it’s “trendy” or gives them an out for acting like an asshole, but those of us who really are see through them pretty quickly. Autism isn’t a mental illness – it’s literally an entirely different way of thinking and seeing the world. That isn’t something anyone else can tell you that you have, at best they can guide you through thinking about how “neuro-typical” people see things and comparing that to what you see. If you’ve been using well designed self-diagnostic tests, then you are doing the same thing.

    March 27, 2018
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    • Eneya
      Eneya

      The tests are created by those same experts you mentioned don’t understand it and some of them are autistic… I am sure there are plenty of people who are talking bullshit but can we not go in the tired direction of “experts don’t know what they are talking about”, because that doesn’t help? Please?

      March 27, 2018
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  47. Kate
    Kate

    God, I can’t imagine associating with other “autistic moms” while being autistic myself. That sounds like an absolute fucking nightmare.

    I’m on the spectrum myself and so much of what you wrote about your childhood, etc. rang so true to me. I also didn’t consider the possibility until I was in my mid-20s because I didn’t have the more stereotypical symptoms.

    March 27, 2018
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  48. Sigyn Wisch
    Sigyn Wisch

    I’m autistic and I didn’t find this ableist or problematic at all. To answer your question about why you believe some people but roll your eyes at others, I think many people are like that. There’s a difference between people who recognize they’re different and then study up on autism and realize they may have it, and people who want attention or want an excuse for their bad behavior or see neurodivergence as a hot trend and want to be part of it. I once defended a friend of mine to my dad because “she has Asperger’s too!” but he responded with, “No, she doesn’t. She’s a spoiled brat.” And I think that response is natural in some cases.

    I had a similar experience like the one you had with your uncle, but for me, it was my father-in-law getting mad at me for no discernible reason and then me agonizing about it FOREVER and crying for weeks about why he wouldn’t be friends with me. I think it would be really helpful if older people would sit down with younger people and have open, honest conversations like “Hey, you know when you go on for five straight minutes without a breath, it makes the rest of us feel anxious or bored” & work with us on concision, and “Please lower your volume; you’re hurting my ears.”

    Coping mechanisms are hugely important. I didn’t learn any as a child and went to a non-public school that grossly stigmatized us and enforced neurotypical-passing behavior. Was always told “that’s inappropriate” with no context of why, and “think about how [the kid bullying you] feels”, without anyone doing the same for me, and as a result I’ve developed extreme social anxiety and I always apologize for talking too much and asking for things with new people.

    Also, autism warrior moms need a course on compassion. There’s nothing WRONG with their kids, just different. If you want to make sure your kid will have a truckload of fun and exciting issues, by all means treat them as a problem that needs to be solved and not a small human learning to navigate the world.

    April 1, 2018
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  49. A Nonnie Mouse
    A Nonnie Mouse

    My middle son has been diagnosed as on the spectrum – in my province, Asberger’s is no longer a diagnosis, and everything is lumped under the Autism label. I don’t tell many people about his diagnosis, as if you didn’t know, you would just think he’s quirky. He struggles with transitions, reciprocal communication, and is noise sensitive. He also tends to just tune out when he’s overwhelmed (like in a crowd situation). I try to take his personality into account when planning anything, but I also do that with my other two. I would rather set them up for success.

    His diagnosis doesn’t make him any less, and he is still my wonderful son whom I love dearly. I wouldn’t trade him for anything. The good thing about knowing he is on the spectrum is that we can adjust how we parent him to accommodate it – which we were doing anyway before he was officially diagnosed, it was just accommodating quirks instead of autism traits.

    It has crossed my mind that I am on the spectrum, and I have taken online tests that say there’s a possibility. It does explain a lot of my social issues (I’m fairly terrible at it, but have been practicing for years now). I like numbers and patterns and things that make sense. Other people baffle me. I’m going to take the test you linked to in the comments 🙂

    April 4, 2018
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  50. Shayna
    Shayna

    I haven’t visited your blog in a while and just saw this post. My people, my people! I’m also a child of the 80’s. Was diagnosed with ADHD at age 4. My parents ignored it. I knew growing up there was something wrong with how my brain worked. Apparently my middle school also thought I had ADHD and my parents ignored it. I was tested and found to having many learning difficulties in high school. No one brought up autism. In my late 20’s I started reading about autism and aspergers syndrome, particularly how the symptoms are often different in women. It was a light bulb moment for me. Suddenly I felt like things made sense. My strange way of thinking, inability to read facial cues and the constant “stimming” with my hands and feet.

    I decided I wanted an official diagnosis. This was nearly impossible. Everywhere I called only did diagnostics on children. Finally I found a doctor who saw both children and adults, but I am pretty sure I was her only grown up patient. Insurance would not over it and I paid about $1500. I was diagnosed with Aspergers syndrome. I just cried for a good 10 minutes in relief.

    There is nothing wrong with a self-diagnosis provided you have a scientific basis to it which it sounds like you have. I know the testing is expensive and hard to get as an adult. I have no issues with adults who have read up and researched ASD and over time came to the conclusion they were on the spectrum. Within the last year I joined some autism groups on facebook. This was first time interacting with other autistic people. It has been so education. I already hated Autism Speaks for their former ant-vax crap but I learned how horrible they really are. I have a bunch of people in the groups who realized they were autistic only after their child was diagnosed. You are not alone.

    April 5, 2018
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  51. Bookjunk
    Bookjunk

    After dragging my feet since Jenny wrote this post, I’ve just finished taking an online Autism Spectrum Quotient Test and I scored 32 out of 50. 32-50 means you might have Asperger’s. I seriously don’t know what to do with this. I’ve always known I have certain autism traits, but I somehow figured I didn’t have enough of them or to such an extent to “qualify” as being autistic, because they don’t impact my life severely.

    And now I’m thinking, well, I am over thirty, still live with my parents, have never had a boyfriend past the age of 14 (me, not the boyfriend; and even then I had zero idea what to do with him or how to behave around him), I don’t have a job – aside from a few freelance things which don’t take nearly enough time to be able to call it part time work and don’t earn even a quarter of what it would take to make a living – and when I think of living on my own and having an actual full or part time job (doing god knows what) my first thought is one of intense fear and panic and ‘no, I can’t!’ and my second thought is the super dramatic (and totally not on the table at the moment, so if somebody feels called to save me: you’re very kind, but there’s no need) ‘I could always end things.’

    So, yeah, maybe I am a tad autistic and maybe it is after all severely impacting my life. I just don’t know what the hell good a real diagnosis would do. My extended family already thinks I’m not-good weird. A diagnosis would probably seal it for them. Would it get me the help I need to live on my own and hold down a steady job without being completely miserable?

    It’s so weird to think that you know yourself quite well and believe that you’re getting by okay, only to suddenly find out that, no, you don’t and you really aren’t.

    April 18, 2018
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