Behind the Screen
Virtual reality is a blessing and a curse. Madison, who lives in a rural area, feels like she’s a part of the queer community, “but only online. I have found groups on Tumblr and Facebook and in the blogging community that have made me feel connected to the community rather than as socially isolated as I am in person.”
In cases when the “real” world is unsafe, cyberspace can be a haven. “Talking to people online saved me,” said Anika. “It’s easier for me to express myself and make friends in writing.”
Yet we’re back to square-one when we meet face-to-face. “I had a woman break up with me because she didn’t think I was the same person in real life as I was online,” shared Fern, who “came across as much more self-confident online.”
Loneliness and Inexperience
“When I was younger it was hard,” said Anika of being both queer and on the autism spectrum. Besides “always falling for the wrong people”, Anika “didn’t have anyone to talk to” about her feelings. “I didn’t know how to connect with others at all,” she explained. “I didn’t really have any friends until I got older.”
Anika’s story of loneliness is common among people with autism spectrum disorders. On the autism spectrum, it’s hard enough to find friends… How the heck do you get a date? “I’m terrified of rejection,” admitted Madison. “Because I try to plan out the expected routes things might go, I get so wound up in how I could deal with it that I never end up giving it a chance of happening.” Samantha has similar feelings. “Most of the time I don’t know how to approach people for a date, or I worry I’ll bother them somehow,” she said.
Picking someone up not only requires recognizing flirtation in others and being aware of what signals you’re sending, but also the confidence to keep interacting after years of disappointment, combating the weight of past social failure. In some ways, I’ve got less practical knowledge than people half my age. “I haven’t been dating much,” said Anika. Same for Samantha, who went on her first-ever date at the age of twenty-one. “I’ve definitely been a late bloomer when it comes to dating,” she said. She’s currently disheartened that nothing has lasted longer than a month. “I want a long-term relationship, but I just haven’t been able to connect with any of the people I date,” she lamented. “Most of them seemed to just lose interest in me for some reason.”
When you are in a queer space, you don’t need to stop and tell that hot chick you are making out with that—gasp!— you like girls. But queer people on the spectrum face another “coming out” conundrum. Do we tell her we’re autistic, risking possible prejudice, or keep it a secret, even if she misreads our stilted body language as rude, awkward stupidity instead?
“It’s difficult to tell sometimes when to disclose that I have autism,” commented Samantha. “One person I dated happened to also be autistic, so we both mentioned that early on.” Fern wasn’t so lucky. “One woman I dated refused to believe I could be as clumsy as I appeared to be,” said Fern. “She thought I was faking it to get attention. Either that, or, ‘You’re disabled, and I don’t want to date someone who’s disabled.'”
It hurts when people reject us or exclude us just for who we are. Fern has witnessed an obscene amount of ableism in her local queer community. “The community must take a look at who they are excluding and how to change that,” she stated. She has “deaf friends who can’t attend events” without interpreters or captioning, “physically disabled friends who are excluded when a party, dance or event is held in a building with no elevators”, “people with diabetes or food intolerance who find they can’t eat the food that is served”, and friends on the autism spectrum “driven away from Pride by overly-loud music.”
However, Josie’s experience is proof that the community can work to welcome people of all abilities with positive results. “My local group is wonderful, and very mindful of the need to understand and combat ableism in order to make for a safer and more inclusive space,” said Josie. Her gathering informs visitors about elevator and bathroom accessibility, labels foods with allergens, “provides earplugs and quiet spaces at most parties”, and meets in “a scent-free building”. “Safer Spaces” officers attend events in case members get upset or over-stimulated. . “Overall, I’ve had a very positive and empowering experience with my local queer community when it comes to understanding my autism and my needs as a disabled queer,” she said.
Queer women with autism I spoke to found creative ways to work with their strengths in the queer social arena. Far from being passive victims, they learned to cope with everyday sources of social skill bewilderment, communication breakdown, and sensory overload to enjoy themselves in the community.
Unlike in-person queer events, which are usually not geared toward people on the autism spectrum, the internet eliminates body language and lessens sensory overload. Online dating allows Samantha to comfortably socially interact in her own way. “I’ve used online dating almost exclusively, mostly because I have difficulty making the first move or flirting,” she said.
Strategies to deal with sensory input are an important way to stay sane. “All noise sounds the same volume to me, so I cannot filter out one conversation when another is taking place,” said Camille, who knows smells “can make me sick to my stomach.” Avoidance is one tactic, but Camille has another means of regulating her senses. “I have to put one hand over one of my ears to focus,” she said, and for the smells, “I tend not to breathe through my nose anyway.”
Josie found herself inventing alternatives to spectrum-unfriendly situations. “My friends and I find Pride events to be inaccessible, and hostile to queer folk who are not white, cis, masculine, able-bodied and neurotypical,” she told me, “so we have decided to do our own Pride activities. Among them is an all-bodies swim at an accessible swimming pool.”
Having a supportive friend or friend-group can help us to comfortably participate in traditional activities. “I like going to clubs,” said Anika. “But I always make sure to have a plan B and that the people that I’m with, or at least some of them, know about my issues and that I might just leave if it gets too much.”
Around 1 in 20 people identify as LGBTQ, and at least 1% of the planet has an autism spectrum disorder. I’m no statistician, but that means millions people with ASD are queer or gender-nonconforming! One day, you’ll meet an adorable queer person who just so happens to have autism. What will you do?
When flirting with someone on the autism spectrum, leave out the nuanced body cues. Tell us your thoughts or feelings as literally as possible. “Don’t be afraid to ask if we are interested directly,” Madison advised. “We might not be able to tell from your usual rounds that you are, and we don’t always present as interested the way other people do.”
Because we may not understand all the inflections of body language, we’re easy targets for being “used” by faux friends and undedicated dates. Spell out unspoken rules and be up front about your intentions. “In my experience, being open and honest to people gets you a long way,” elucidated Anika. “The relationships I have been in have been with people who are honest from the start about how they feel.”
If we seem bizarre, remember that we don’t speak fluent body language but that most of us desperately want to connect. Challenge yourself to push past prejudice and get to know us first before judging. “Try to be considerate towards other people and the fact that they might not function exactly like you,” recommended Anika.
“I think neurotypical people in general need to stop seeing autism as something that needs to be ‘cured’,” emphasized Samantha. “It’s not a disease, just different brain wiring.” It’s true that our neurology makes the social world tougher. But our differently-wired minds are also behind our extreme honesty, our passion and knowledge about things we care about, our sensitivity to our environments, our innovation and openness to alternatives, and our loyalty to the people who love and accept us.
The autism acceptance movement is about celebrating who we are, and respecting our differences instead of shaming ourselves. Difference isn’t a deficit. “I think my autism has made me less concerned with fitting in,” said Kelsie. “I don’t feel any urge to be like others – in fact, the thought kind of scares me. So that makes it easier to admit I’m different in another way as well.”
Who understands choosing pride over shame more than us, the members of the queer community? “In my experience, people who somehow identify outside of the norm are often more open and appreciating of people being different,” stressed Anika. “I feel more accepted in these places and I don’t have to work as hard to appear ‘normal’. It gives me more room to breathe and makes me less stressed about being around people. I don’t feel that is harder in the LGBTQ community than anywhere else. If anything, it is easier.”
Feature image by Rengin Tumer.
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Finally an article like this! Thank you SO much for writing it! <3 <3
One issue I had was being taken seriously when I came out. Family saw it as a manifestation of my autism so it became a pathological behavior to be quashed.
Needless to say, being trans makes this no easier.
I’ve often used the term “Dating pool” to try and describe my difficulty finding a girlfriend to people. Basically, being gay already limits your dating pool to a puddle; add in autism and it becomes more of a dating handful of water.
But as an autistic gay transgirl, my dating pool is honestly more of a dating water molecule.
Not to mention that I don’t really have friends in my country (I live in the Netherlands), I don’t know any other queer people, gay bars and other queer events are absolutely terrifying for me and I don’t know how to meet people offline. I’ve tried dating sites too, but that presents another conundrum: do I put the fact that I’m trans on my profile, and risk getting harrassment and tranny chasers, or do I not put it on there, getting about ten times as much messages, but knowing that if I ever told them I was trans they’d probably react badly?
I gave up on those because most of the few messages I got were very questionable.
I’ve been told I’m actually fairly attractive, but it doesn’t seem to help much.
*waves* I’m a queer person in the Netherlands too! I’m not on the spectrum but the gay bars are definitely not my thing and so I hardly know other queer people in this country either. (I’ve been trying to find book circles or queer geeks or basically anything that doesn’t involve drinking and loud music, but no luck so far.) If you are ever looking to hang out with someone queer offline, I totally exist.
Emily! I am so happy you wrote this! I am so happy this is on Autostraddle! I love all the interviews you did.
I’m not sure how I found them, but I read the blogs and Tumblrs of a bunch of queer autistic people. I feel sad that they aren’t my friends “in real life.” But I had never realized that events like Pride and loud dance party mixers are potentially overwhelming and unwelcoming to queers on the spectrum.(Oblivious neurotypical moment, sorry.) Hmmmm! You are giving me things to think about…
Can we talk about sensory processing issues all the time? I am just learning how to use sensory input to self-regulate. Dude, it is changing my life. For example, light touch can feel like pain to a lot of people, but deep touch (lol Occupational Therapists this sounds so sexy) sometimes feels really good to the same people. There are workarounds to many sensory issues.
As an OT student, I am all about that deep touch!
I’m not on the spectrum myself, but I have several cousins and family friends who are. This article has taught me so much, and it really resonates with me.
I’ve been dating someone with ASD for several months now. I’m in a queer, poly relationship, and this particular relationship happens to be with a man, but this was extremely helpful. This is my first instance dating someone with ASD, and dgjas;gksal;gja thank you for writing this :)
I’m happy to see an article like this. I see a lot of things here that strike me as being nearly identical to my own experiences. As in, if I wrote them down, some of these folks’ words would match mine verbatim. I have never been diagnosed, though I inch closer and closer to seeking a professional opinion. In any case, whether or not I fall on the autism spectrum, I still interact with the world differently than other people, and I see a whole lot of myself here.
I’m lucky; I’ve known my fiancée since we were 12, so I’ve had a lot of time to figure her out. She’s also had time to understand who I am and how I act. I’m thankful that she finds long-winded, one-sided discussions and accidental injury attractive, or at least amusing. We’ve had some hard moments, when I was too honest or incapable of reading her right, but for the most part she understands and helps me. She gave me a tutorial on “how to know it’s your turn to speak in a group conversation,” because Jesus Christ how the hell am I supposed to know that?
I’ve also had some really awful experiences. As mentioned above, I have a tendency to ramble at length, on various technically specific subjects, whether or not the other person is listening. Most people either tune me out without comment (which I don’t mind, because I don’t notice) or actually listen. I had one friend, who is no longer a friend, tell me to my face that I was annoying/stupid, and that I should just go kill myself. Multiple times.
I wish I had been able to tell her off, or walk out right then and never speak to her again, but I didn’t. She was my oldest friend, and at that point in my life, my only friend. She was also queer, and way more bullied for it than I was, so she should have known better than to turn around and be a bully herself.
I know that my rambling is annoying. I knew it then, but I was about as capable of stopping myself as an ant trying to stop a semi-truck at highway velocity. She made me feel awful for something I could not change, and it’s taken me a long time to realize that I am different, not defective.
Anyway, I always feel like my comments online (like this one) end up being rambles just like in real life. But I guess the point of writing it is to say I’m glad for this hard evidence that I’m not alone, and that in my experience, there are people who do understand or are willing to learn.
Lol, I feel you on the internet rambles. I was looking at my own post and realized how long it was getting and I was only half- way done! I had to go back and edit it down before clicking submit.
“I know that my rambling is annoying. I knew it then, but I was about as capable of stopping myself as an ant trying to stop a semi-truck at highway velocity.”
You said this so, so well. <3 from another rambler.
I am also lucky to have a partner who finds my (possibly ASD-related) quirks attractive, which is probably why we work together.
I would love to hear the highlights of your “how to know when it’s your turn to speak in a group conversation” lesson. I usually end up not saying anything because I can’t seem to “break in” to the conversation, with a sprinkling of trying to say something and realizing that someone else has already started talking.
I really really want to thank you for this article. For so long I have felt like when it comes to flirting/dating and making friends, it’s like everyone else is speaking a secret language that I am not in on and I’ve never understood why it is so hard for me to form relationships with others. I moved to college a few years ago and Haven’t made any good friends nor have I been on a date. All the normal friend making/ dating scene revolves around parties and clubs, which totally stress me out because the whole socialization game is not my forte, plus I really struggle with approaching people I don’t know. I thought there was something wrong with me specifically, like I was just broken or something; It never crossed my mind that my difficulties may be the result of a disorder. This has really given me hope and encouraged me to get tested for ASD. Thanks so much!
Wow- this was so well done! I learned quite a lot, thank you so much for sharing!! I love seeing articles on Autostraddle that deals with a specific point of view or experience that I might not have thought about/known about otherwise. Great job Emily :)
I never thought I’d read an article about being queer and being ASD, but then again this is Autostraddle and I should know better.
Dating is always so nerve-wracking that I sometimes find myself avoiding it. Also, I have this argument with myself (all the time) about whether it’s something I should tell someone about up front (mainly because they’ll notice “odd” habits) or wait till…forever. I never want to feel like I’m placing a disclaimer on myself, but I also want people to understand it a little.
So, I just wanted to thank you for this article. I don’t really know anyone else like me, so reading other stories makes me feel like there are people I can relate to. I just gotta find them.
I teach kids on the AS, I think children are a lot more accepting of differences so it’s really interesting to hear about adult experiences. I guess a lot of my job is also to help the kids prepare for this kind of thing in the future and I’m still trying to figure it all out, so thank you for this article <3
“I think children are a lot more accepting of differences”
As someone on the spectrum I completely disagree with this. Kids were a lot worse to me about my autistic characteristics than most of the adults I deal with now, whether they’re informed of my diagnosis or not.
Children are absolutely not more accepting of differences, especially something like autism. I was bullied relentlessly from the point where I started to stand out (around age 7 or so; I was diagnosed at age eight) but since I’ve left high school, I haven’t had any issues with people ostracising me because of my poor social skills. Strange looks, certainly, but not the outright taunting that I endured from other children.
Children are terribly cruel. They take anything that’s different in a “weird” way (which a neurological disorder which affects one’s development of social skills most certainly is) is met with disdain, cruelty, and taunting.
Adults, on the other hand, while they may not be completely understanding, are much less cruel when faced with someone who cannot pick up on social cues. They’ll find it strange, but they won’t stoop to the level of outright taunting someone for something they clearly can’t help.
I’ve never once had an adult mock me for my impaired social skills. That isn’t to say that they understand my issues, but they don’t make it a point of mockery like children do.
I’m sorry that was your experience, it sounds like you had a really hard time. The kids I work with are between 6 and 11 and myself and their class teachers have only seen good things in their interaction with other children, but the school I work in is very focused on the inclusion of kids with SEN so maybe that’s where the difference lies? It probably comes down the the environment in the individual school but where the school is supportive of the kids with SEN I’ve never seen it be an issue to the other kids.
Can I ask if you had extra support in primary school, or if there was anything you felt like your school/teachers could have done to help you more? Do you feel like the kids who gave you trouble were like that despite a supportive atmosphere and good example from the adults in the school?
Generally, the staff was supportive of me – I only remember two teachers from 4th-8th grade (when it was worst) who didn’t actively support me, who happened to be Phys Ed and math teachers; those classes didn’t exactly give me much of an opportunity to stick out besides being very good at math, so kids didn’t have much of a reason to give me trouble. In those classes, it was almost the opposite: I was good enough at math that otherwise hurtful kids sought my help, and I was bad enough at phys ed – and the teacher so insistent that my asthma (which was the primary problem there; lack of coordination fell on the back burner when my asthma was so bad) wasn’t an issue – that I had support there from other kids.
The kids definitely gave me trouble in spite of what the teachers did. My biology teacher in ninth grade was so sick of seeing people make fun of me that he helped me switch to another class offered the same period. (and from there, I was in almost all advanced-level classes, where the kids had bigger things to worry about than making fun of the weird kid; it didn’t stop completely, but it definitely lessened in severity). My teachers in 4th, 6th, 7th, 8th, and 9th grade were very supportive and yet it didn’t stop the kids from being insufferable and bullying me.
Maybe the ages of your students have something to do with it? I only started getting made fun of, really, when I was nine, and it only got really bad (to the point of triggering depression) once I was twelve. In first through third grade, while I didn’t exactly have a plethora of friends, the kids didn’t actively mock me, because I wasn’t that weird yet. I did only have three female friends in that time (and one of whom I’d known all of my life), but I had a significant number of male friends. (Well, really, I wasn’t seen as weird in preschool or by the boys in my kindergarten class, but you said you work with children ages 6-11).
I have to agree with the other commenters in this thread and say that in my experience, kids are far more intolerant and just plain cruel than any adult I’ve ever met. I was bullied for years in middle school, and I never really understood why. It just always felt like there was something different about me that the other kids sensed, though I didn’t feel any different. It wasn’t until I was diagnosed with an autism spectrum disorder last year that I was able to fully put my childhood, including the bullying, into perspective. I was probably missing a lot of social cues and acting in small ways that seemed “weird” to the other kids. And when it comes to weird, kids are like vultures; they’ll just eat you up.
Emily!! What a GREAT article!! Good write up and details. Thank you for sharing your story!
This. This this this this this this this this THIS. Queer asexual almost certainly on the autistic spectrum here, and, can I just say, thank you SO MUCH for writing this? I knew there must be other people like me out there, but it’s not something ever talked about, so, THANK YOU.
And on behalf of my fellow queer ASD’s (QASD’s?), to any neurotypical reading this, let me reiterate: don’t be scared of us. Yes, I tend to ramble about obscure subjects and am super-clumsy and can’t read body language to save my life and have both prosopagnosia (the inability to recognize faces) and a sufficiently large pile of sensory issues that I identify as asexual and would rather die than go to a nightclub…but I’m also a pretty awesome person. People like me are dateable and can in fact be a lot of fun to date. You just need to, you know, talk to us and stuff. :-)
This was wonderful to read and see put forth to the community. The only question I am left with is what about the partners of those on the spectrum? Support and understanding within the partnership and within our community?
As someone who was diagnosed when I was thirteen, I find this fascinating. I’ve found that a weird amount of the LGBTQ community sort of co-opts autism and it’s hard to relate to those people because they clearly don’t understand what living with it actually means. I’m also uncomfortable by people who wear their ASD as a badge of some kind. Obviously everyone is different, but I’m not one of those people who can easily talk about dealing with these issues. They affect every single part of my life and not in any sort of good way. From sleep to relationships to school performance to going somewhere to eating habits to what I wear, etc. The relationship I’m in now is the first time I’ve ever cohabited with a significant other, and it is SO hard, for both her and me. She doesn’t understand me at all and it’s hard for me to explain why I do what I do.
It’s interesting how you compared realizing that you were different in the sexuality sense to realizing how you were different on a brain level. That’s how it was for me, too. I’ve known I liked girls and not boys since I was very small, but started realizing just how different that made me and putting words to it (in my head) when I was seven or eight. I started realizing just how different I was on a brain level around the same time, and it made the shame I felt about myself worse. I was diagnosed when I was thirteen because social services got involved. It was a eureka moment to put a word to what I was dealing with, just like it was a eureka moment when I first learned what gay meant. It just clicked, and suddenly, it was like I wasn’t just “weird” anymore; they were people like me. Just like being gay.
I kind of wish the autism thing would get easier like the gay thing has, though. It absolutely sucks that this will never go away, that I won’t just wake up one day and be completely normal. It gives me tons of anxiety. At the same time, there are a lot of famous people with my sort of functioning level that seem to be doing just fine, so there’s that. My cousin, who sort of started out like me but whose parents were in denial about it and didn’t get him help, is in much worse shape now and may not be able to live completely independently. I think it’s helped my mom deal with my own issues because she sees that intervention HAS helped me.
I don’t know. I obviously have a lot of feelings about this. Thanks for putting words to a lot of what I’ve dealt with and continue to deal with.
What kind of intervention did you consider to be most helpful? My nephew is on the spectrum, has a social skill delay of about three or four years, and I’m kind of worried about him.
Thanks so much for writing this. I can identify with a lot that’s said here – I often experience sensory overload, to the point where I can get terrible migraines if the room isn’t dead silent and with lights sufficiently dimmed, and also have a lot of difficulty reading “obvious” facial/social cues, which basically has me assuming that the person I’m interacting with is either neutral towards me or doesn’t like me in *that* way (in platonic and romantic way, respectively) unless they make it painfully obvious otherwise. And, yeah, going to a bar or large social event where I don’t know anyone/at least a few people is pretty much my worst nightmare.
Again, my thanks – I hope it will help the others in the community become more conscious of the experiences of people on the Autism Spectrum who are dating.
I’m so so happy to see this article on autostraddle! As a queer trans woman on the spectrum I relate to this so much.
Is there anybody here with the opposite of hyper sensitivity but with hypo sensitivity?
I have issues with hyposenstivity, which has really bugged me with intimacy with partners and for sexual fulfillment, as well as sometimes making me jealous of my partner who happens to be ASD too but is hyper sensitive. :/
I learnt a lot from this. Thank you for writing it! Autostraddle continues to deliver …
I was amazed at how much this resonated with me, even though I am not on the spectrum. I do , however, have social anxiety, which causes some similar issues (though obviously the two are very different).
I’m actually quite adept at reading body language when I’m feeling calm – friends even come to me for analysis of issues they are having in their relationships. Unfortunately, as soon as you put me into a social situation where I feel uncomfortable my ability to read others immediately evaporates. The more intimate a situation gets, the harder it is for me to evaluate it, and the more likely it is that I will assume the worst (that they hate me, that I’m being annoying, that I’m doing something wrong, that I seem incompetent or pathetic). Eventually I get to know someone well enough that my anxiety dissipates, but getting to that point is incredibly hard – hard enough that at 25 I have never been in a long term romantic relationship. Friendship is only slightly easier (I’m lucky enough to have a few wonderful friends, but it is very difficult for me to get to know new people). I’m seeing a new therapist now and am hopeful that things will improve, but it is very frustrating.
I am also introverted, so loud clubs and the like are not ideal for me. Unlike for some people on the autism spectrum they are not exactly overstimulating, but they do drain my energy reserves quickly. I can enjoy myself in that environment for an hours or two, but then I need to retreat to a smaller group where it is easier to actually have a conversation.
Thank you for writing this – even though our experiences differ, it helps to be reminded that there are others who experience the world differently than most, and that this difference is part of our natural diversity, not something to be ashamed of.
This is awesome and so, so necessary. My younger sister is autistic and while she many not identify as queer (she is only 15, so who’s to say what the future holds?), body language is SUCH a crucial part of navigating her day-to-day life.
Thank you for this, seriously.
My mother wants me to be assessed for ASD and I’ve had my own suspicions I might be on the spectrum for some time, but honestly I’m too frightened to find out. I’m afraid they’d tell me I’m not autistic, just fundamentally deficient.
I think that if I were to go to seek a diagnosis it would be too late, because ever since my teens I’ve been perfecting my impression of a normal person and it’s actually pretty passable. It was a revelation when I realised that small talk is just asking people boring questions and moving your face around in a sympathetic kind of way.
It’s like being proficient in a second-language. I can’t read non-verbal cues very well – or rather I can, but it’s like code-breaking and I often make mistakes – and I can’t remember faces, even of people I know quite well (you have no idea how embarrassing this can be, especially in fairly small queer circles), but I am very verbal and don’t usually miss double meanings and that sort of thing. And I tend to rather pantomime my own body language, by way of overcompensating.
But the strain of it causes me terribly anxiety and I think it is what launched my depression.
I was my parents’ first born and so they didn’t notice I was different. I also suffered very bad glue ear as a child, so a lot of my behavior was put down to my periodic deafness. I was a rule-obsessed, pedantic child, very clumsy, mostly solitary, overwhelmed by bright lights and loud noises, didn’t like social games, escaped into imaginary worlds and had passionate enthusiasms that seldom overlapped with the things my peers were interested in (Spice Girls were fine, Harriet Tubman, Greek philosophers and communism less so). I didn’t know how to talk to other children – adults were a bit easier – couldn’t understand why anyone would want to break a rule and didn’t make a joke until I was about fourteen. Most upsetting for me was not being able to tell the difference between ordinary teasing and unkindness. It all seemed the same to me. I was a very unhappy child, in the middle of a very happy childhood.
As an adult I actually really like being social, but I find the amount effort it takes me – even in quite ordinary interactions – is completely exhausting. It means that I let friendships slip away from me, because I’m not sure how to keep them going and that I am unwillingly celibate in my mid-twenties.
I also live in the family home and have underperformed professionally, because the idea of navigating the social intricacies of an office job really overwhelm me and I am so bad at interviews.
I would like to go out dancing more often – despite the fact that dance classes were hell to me as a child, I’ve actually grown to like it – but can only handle the noise, the crush of people and way the lights are for limited amounts of time. I have to know I can get home and the anxiety of being stranded (or having to stay with a friend not in my own space) mean that that rarely engage with the queer community.
I find I am most comfortable in small groups, with only one conversation going on at one time. When I am caught between conversations I actually start to feel a bit sick. I have a tendency to lapse into monologues (especially about things I find interesting), if I’m not careful.
I am not particularly introverted – although I am self-contained – so I think it’s not always clear to others how much I suffer with social interaction. I have to be so careful all the time, because I can’t tell easily when someone is bored or offended. Often I realise in retrospect that what I said was awful or could have been taken another way, and it can cause me flashes of grief literally for years.
And because I am always alert for potential traps, I feel such vicarious discomfort when I see other people who are about to be betrayed or embarrass themselves (even fictional characters). Everything settles in my gut and ties me in knots.
My clumsiness has improved a bit as an adult (all those horrible years of horrible dance classes), but small objects just seem to leap out of my hands. I find many types of touch very alarming and sometimes the light seems to sag and bow and I feel myself becoming detached from myself. Sometimes, for basically no real reason, I’ll become so overwhelmed I’ll start to cry or worse, to stutter and twitch. Before this happens I can feel myself falling out of my body. It’s like going into orbit or to the bottom of a lake. It’s sort of peaceful, strangely once it’s happening. Sometimes my legs fall out from under me and I end up on the floor. I can’t talk. Or I could talk, but because I’m in space and the idea of talking is remote and ridiculous. Everything is watery and vague.
I cope with life by acting. I’m sure on some level everyone feels like this, but I’m not sure everyone is in so elaborate a production.
But to my credit, I think most of the time I put on a pretty good show…
I absolutely do understand. A lot of what you say matches the experience of my teen daughter, who has been diagnosed as being autistic, and some of it matches mine. (My two younger children are also autistic: it’s a fair bet that I’m on the spectrum myself.)
If you can bring yourself to do it, it may well be worth being assessed to find out if you are on the autistic spectrum. Many people, while initially feeling some grief, subsequently feel a deep sense of relief once they have their diagnosis. My teen daughter was anxious about the process, too, but found it a relief once she actually had a diagnosis, because it proved that there was nothing ‘wrong’ with her as an individual (which she had feared): it was simply that her brain is wired in a different and understandable way – a way that brings advantages as well as some disadvantages.
I don’t know how things work in the States, but here in the UK, having a diagnosis also makes it easier to get additional support and resources in all sorts of areas, from housing and social services support to the college and work environments. This can make independent living much easier, which in turn can make it easier for you to focus on your strengths and on living a fuller life.
Another thing that helps is to read about autistic people who have contributed so much to the world, and would not have been able to do so if they had not been autistic. Temple Grandin springs to mind. And Albert Einstein had many autistic traits, was considered ‘retarded’ as a child and could not physically care for himself even as an adult.
Either way, the fact that you can express yourself so clearly is proof that you are not ‘fundamentally deficient’, merely that you face challenges in specific areas of life – and everybody does. They’re just not the same challenges for us all. Some people who are very socially adept have a lot of trouble academically, or with impulse control, or with basic empathy, or have addictive personalities. It’s only human, after all.
Oh, gosh, I could’ve written just about every word of this. We’re not alone, though, really—that’s something.
I just wanted to say that it is 100% clear to me from what you write and how well you write it that you are a very smart and funny and interesting person who is absolutely worth knowing (and I wanted to say it because it is so easy to despair of oneself when one’s cut off from the steady stream of reinforcement that more naturally social people I think receive).
One thing that has smoothed my own path a little has been to just own the odd edges of my personality and social behavior and allow them to be part of the image I project. Okay, so I can be blunt and intense and, like, glacially reserved—okay. That can be part of my “brand,” as awful people would put it. That means that I can joke about it with friends; it means I’m not expected to hug anyone; it means that I can let those friends tell new acquaintances, “Oh, it’s not you; that’s just her thing.” I’m just gonna go ahead and lay the welcome mat out right in front of this weird cave.
If I’m overreacting, just disregard me, OK? – I don’t mean anything by it.
First, my gosh, I was gonna say you pulled the words right out of my brain and memories, about childhood stuff. And if _that’s_ all that small talk is…! ;) Anyway, I appreciated this Comment of yours.
In your last big paragraph, I felt concerned about you. 2 years a medical-social caseworker may make me little more than a glorified volunteer. But I wonder, whether or not they locate you on the Spectrum, if maybe you have one or more _other_ things going on that might be hampering your quality of life, even putting you at risk in certain situations, or even playing off of or worsening each other. Put another way: You might have an ASD plus one or more other things. Or, as you said, you might not have an ASD as such, but still have one or more other things. You may be right that there’s not so much ‘the system’ can (or will) do for Spectrum adults, but maybe if other issues are present, _they_ could receive some treatment that would go a long way to helping you out.
You didn’t ask, and you’re not me, but if I was able to say what you’re saying, I’d make a point of bringing it up with my primary physician and/or mental health therapist/psychiatrist. I also sometimes wonder if we on-or-near the Spectrum don’t always sound like we’re talking about a big deal, when we _are_ talking about a big deal, with healthcare professionals. Point being, we might need to lean on them a bit if they don’t seem to realize it the way we see it. Sometimes they just never will for complicated reasons (not necessarily all bad). But I’m roughly twice your age, and I’ve lost _years_ of quality of life because of this, so I hope that doesn’t happen to you.
Thank you for writing this! It’s always important to be aware of issues that people may be facing so we can make events and our community as a whole more accommodating to everyone.
Also, it’s just important to know about how different people experience their lives in general. This stuff is important!
Yay! It’s nice to read about people like me and hear about their experiences.
I also think none of these autistic things make me less desirable, the right person/people will think I am perfectly me.
This was a really great round-table, and the comments have been superb as usual! I love this site so much.
Thanks for this.
It was very needful.
Thanks many times over for this piece. I’m nearly speechless, having never seen this specific intersection of my daily life addressed.
Neurotypicals of any gender and sexuality: learn to say what you mean EXPLICITLY, and take people’s words and actions at face value (unless you have a specific reason to suspect them of being disingenuous, of course). At least make a fucking effort.
“take people’s words and actions at face value”
I think this is pretty reductive. As someone on the autism spectrum, while I sometimes have difficulty telling if someone is sarcastic and joking, I’m perfectly capable of talking that way myself. As are many people on the spectrum. While it certainly is true of many autistic people, suggesting that we all speak in absolutely literal terms like sci-fi show robots is an offensive stereotype. And we shouldn’t be perpetuating it.
I mean, it’s fine to say that one individually needs people to be more literal, or take what they say at face-value. But acting like this is the One Standard Way to talk to all autistic people you know is offensive and stereotypical. We’re all different, and not all people on the spectrum have issues (or even just, substantial issues) with recognizing irony, sarcasm, etc.
Also, why do I get the feeling it was the editor rather than Emily who put “neurotypical” in quote marks rather than “non-autistic”…
What do you mean? As a person on the autism spectrum I have an issue with the word “neurotypical” as well, since I think it really should refer to people who aren’t neurologically divergent in general, not just people who are non-autistic.
Fair point. Maybe we need a different word (not “allistic”)
This is super interesting. My wife was diagnosed with Aspergers when she was ~20, and I see a lot of the same characteristics/experiences in her, too. Though, I’m surprised none of these people discussed fixations that affect their daily life, not just sensory issues. I know that’s the biggest obstacle we have come across… Sensory issues are fairly easy to deal with/avoid. Anyway, every experience is different… good stuff!
Oh! So excited to see this. I don’t have autism, but do share a fair number of traits associated with people on the spectrum—abysmal social abilities, not at all a natural at eye contact, coming off as very “cold” or “robotic,, terrible at recognizing faces, very poor awareness of my own body (haha, I’m a mess). I feel like there are some interesting intersections with feminism and queerness here—partly because of the now-common cultural conception, popularized by Simon Baron-Cohen, that ASDs are a condition of the “extreme male brain.” It’s definitely the case that when I came across this vein of thought in the early 2000s I sort of felt like: oh, well, maybe there’s one big neurological explanation for the several ways in which I am a weirdo.
Ultimately I don’t think that theory holds together particularly well (I feel like I’m always plugging it, but see Cordelia Fine’s “Delusions of Gender” for some good critique). Still, though: there’s this idea that women must be naturally awesome at **socializing** and **feelings**, which is easily carried over into lesbian communities. (For example, this trope that we all love “processing” in our relationships, which sounds hellish to me.) Anything that complicates that picture is very valuable.
I’m so happy to see this article on here. I’ve been on the spectrum for a while, and it’s been very isolating. Before, I thought maybe other people had the same problems or maybe stress was causing me to read social signals wrong.It took me a while to figure out (Read: Be told by someone else) that other people didn’t have these difficulties. When I came out, I realized it would be that much harder to fall in love, and in my cynical worldview, I sometimes thought it wasn’t even worth trying. Reading things like this really help me see that I’m not the only one and that the universe didn’t single me out or something dramatic like that.
I’ve thought about writing something like this for a while, as another queer girl on the autism spectrum, but I was having trouble putting my feelings about it into words.
One of the things that frustrates me with some queer people is there often seems to be this expectation in the community that being queer is the only way in which we’re “odd” and out of touch with the world, and that once we find our niche that accepts us for that, we should be fine. And obviously, that wasn’t the case for me. Part of this could be due to my being bisexual rather than gay, of course, but I’ve always felt way more out-of-step due to my Aspergers than due to being queer… and I didn’t even have a name for the former until I was 22 and diagnosed with it.
Like I remember another queer autistic person writing on her blog about her frustration at finding a niche in her school and someone commented “Stop complaining. Your school is totally accepting of queer women. You’re just not trying hard enough to find people. Go be more social and join a co-op or something.” Which is obviously, terrible advice for a lot of people on the autism spectrum, especially consider it’s often co-morbid with social anxiety. A lot of queer communities that are accepting in general often aren’t for people who are neurodivergent in some way.
On a totally different note: I know Autostraddle has a lot of Skins fans. What do the other autistic queer ladies here think about JJ’s character in the third and fourth seasons? I connected with his character a lot – probably more than I have with any other TV character – especially since I’ve had so many friends who treated me like Freddie and Cook treat him on the show. While I was pissed off by the storyline where Emily slept with him, it frustrated me when the reactions among some corners of the LGBTQ Internet were to bash his character in general as another “ugh straight cis white dude” and totally ignore that he’s a member of another oppressed class, one that also includes many queer women. And as rare as good LGBTQ media representation is, good representation of autistic people is even rarer. He was filling a need as much as Naomily was.
Anyway, I like this article. There needs to be more talk about neurodiversity in the queer community. The only caveat I have is I’m not always a fan of the “autism acceptance” movement and I know other autistic people who share those feelings, and I’m not a huge fan of comparing it to acceptance of queer identities in that respect.
I totally relate to what you said about finding far more acceptance of my queerness than of my autism (and I was also not diagnosed until I was in my 20s). When I tell people I was bullied in middle school, and they also know I came out as bi when I was 11, they tend to assume there’s a much stronger connection there than there actually was. I grew up in a very liberal area, and though I did get bullied some for being queer, most of it was for being “weird,” which I didn’t realize until last year actually meant, “all of the things that make me neurodivergent.” I’ve been lucky in that people have been pretty accepting of my queerness. But I’ve never felt like I fit in in mainstream society, even mainstream queer culture, and that’s been by far the hardest part for me.
I also wish there was some more clarification on this article about how much the experiences of different people on the autism spectrum can differ. Everyone has issues with different things. For example, while I’m a bit more sensitive to loud noises than most people, I don’t have a problem with the loud music at dance clubs or Pride, and I would be frustrated if people just automatically assumed that of me because they knew someone else who was autistic who had that problem. Likewise, I have serious issues with time management and transitions that I’m sure other autistic people don’t have as bad as I do.
Ultimately, part of the issue with autism is because there isn’t as much of a single “standard” experience or list of issues like there are with some other mental differences, we do have to bear some of the burden of making people in our lives aware of what our issues are, and requesting accommodations when we need them. It’s also, unfortunately, why it often is so difficult to diagnose, especially in women, because it manifests differently for us than it often does in men. Unfortunately, our society being what it is, the “male” “version” of it is the one that people know the most about when diagnosing…
Also, my advice to non-autistic queer people about how to make your communities more inclusive would I think, be different from what some other people are saying above:
Be aware of general issues that are common among autistic people, but let the individual autistic people in your life tell you what their particular set of problems are, rather than assuming based on a stereotype. Not everyone has issues (or not to the same degree) with understanding body language, or irony or sarcasm. As one comment thread above shows, while some are hypersensitive, others are hyposensitive. Autism in particular is an issue that manifests itself differently in every person who has it, and autistic people can often “unlearn” some of the habits associated with it. (For example: The reason I wasn’t diagnosed until 22, I found out, is simply because I make eye contact with people when I talk to them one-on-one – but I do this because I remember when I was younger hearing people talk about how people who didn’t do that seemed creepy to them. Not because I picked up on it naturally like most non-autistic people do.)
So let the individuals in your life define what their autism means to them. The thing that irritates me in the most is when people just assume I’ll have an issue with X because I’m on the spectrum. Or, conversely, when people act like I “can’t have it that bad” because I often pass socially as neurotypical (but my issues are really severe in other areas). It’s good to know what the common issues are but don’t assume that they apply the same in every individual case. Listen to what works for each of us specifically.
As someone with extreme interest in psychology, who is autistic, and who has studied under someone who wrote her Ph.D. dissertation on autism, I feel like I have to speak up with regard to this article, and the comments here.
I’m not entirely sure I agree with the conclusions that this article reaches. I’m also not a big fan of how there isn’t much contrast offered within the article itself – I’ve been diagnosed since I was eight years old, and I disagree with almost every point presented as unanimous.
Autism is a tricky disorder, because there is no one specific criteria for diagnosis, as there are for most neurological disorders. The word “spectrum” should also be a clear giveaway for this; there’s no “PTSD spectrum” or “ADHD spectrum”, for example, even though there are varying levels of severity and different criterion that may be met. Autism is more complex. Everyone on the autism spectrum deals with it differently, and there is not one “true” autistic mould. It’s a difficult diagnosis to make, even for people who specialise in dealing with autistic people, because it is so complex.
For example, I’m autistic, but I could only relate to a very small part of the experiences put forth by this article (which also seems to generalise those experiences as the “norm” for autistic people – I think it’s important to note that there is no such thing as a “norm” for autistic people.
With autism, it’s also very important not to talk authoritatively about it unless you have a professional diagnosis. Autism is so complex, and what many people think of as “autistic” is really social anxiety with a few other disorders thrown in. You cannot say for sure that you have it unless you have had a professional diagnosis.
Self-diagnosis can be a helpful and important step in seeking a professional diagnosis, and it can certainly help with self-acceptance, but it does not give one the right to speak authoritatively about autism.
I didn’t see anything in the article about self-diagnosis, but it’s a very good thing to keep in mind. However: if you think that you might have it, then you really should seek a professional diagnosis if at all possible. If you don’t have autism, then you almost certainly have other issues that might be able to be controlled with medication and/or therapy
Even with that, I take extreme issue with this: “But our differently-wired minds are also behind our extreme honesty, our passion and knowledge about things we care about, our sensitivity to our environments, our innovation and openness to alternatives, and our loyalty to the people who love and accept us.”
It almost feels as if it’s fetishising autism, or putting autistic people up on some sort of pedestal, as something better than other people. I don’t want people thinking I’m “special” for having a “differently-wired” brain. I want to be seen as a person, not something special just because I can’t pick up on social cues and fall over my own feet.
Also I feel like this article conflates asexuality with autism, like autistic people are more likely to be asexual… and what it’s describing as asexuality doesn’t even seem to fit the definition. Asexuality is the lack of sexual attraction in others. If you’re attracted to other people, you are not asexual, even if you never want to have sex. There’s a difference between celibacy (abstaining from sex) and asexuality: asexuality is not difficulties with intimacy or overloading of the senses; it is an actual lack of sexual attraction.
“Self-diagnosis can be a helpful and important step in seeking a professional diagnosis, and it can certainly help with self-acceptance, but it does not give one the right to speak authoritatively about autism.”
THIS SO MUCH. I honestly hate it when people talk over me when they haven’t yet been diagnosed, and when I call them out on it, they say getting diagnosed is a class/race privileged thing, when I’m not white and I was only diagnosed because social services got involved in my family. It’s frustrating because I feel silenced. Also, if someone tells you they’re autistic, it’s really disrespectful and not really the time to jump into a “Omg I struggle with the same stuff let me list all my problems off to you” b/c I’m not a doctor and there’s really no point. It’s like when I mention my tribal affiliation and people launch into a spiel about how they’re 1/64th Cherokee.
Yeah, I’ve actually gotten into arguments over this before.
Someone told me that I “wasn’t really autistic” and that to be diagnosed as a woman you had to seem “practically retarded” (uh. no. it’s more difficult, but I can pass as NT in a lot of situations and I was diagnosed very young). Surprise, surprise, this person was self-diagnosed and held the belief that Sheldon Cooper from The Big Bang Theory was a model of autism. (I honestly don’t even think he seems autistic).
They got pissed off because I said that I didn’t want people thinking of Sheldon Cooper and BBC’s Sherlock Holmes (neither of whom the writers have confirmed as autistic – actually, the opposite is true in Sheldon’s case) if they found out that I was autistic.
They called me “anti-self-diagnosis” when all I said was to avoid speaking authoritatively about something as complex as autism without a professional diagnosis.
Honestly, I’ve found with most self-diagnosed people I’ve encountered, their ideas of what autism is were totally stereotypical, and they were adamant that there was no way a poor person or PoC could be diagnosed with it. (Which honestly seems racist to me? Like no PoC ever is anything but poor? Really?)
A lot of it just seems to be social anxiety and awkwardness, which uh. Can be caused by social anxiety.
Honestly, a big part of the reason I can pass as non-autistic is probably because I don’t have any social anxiety, and I’m extroverted (in both the psychological sense: “recharged” by social interaction, and drained by solitude, and in the popular idea of being outgoing and social). And I’m pretty upfront with my ADHD, which can also lead to long rambling about things no one else cares about, so if anything they probably attribute it to that.
“and that to be diagnosed as a woman you had to seem ‘practically retarded'”
You’ve gotta love when someone uses blatantly ableist language in order to supposedly fight against ableism…
The way people talk about self-diagnosis as a “class/race” issue is so stupid. Both because of what Helle said, in how it can often be racist in assuming that all POC are poor, but it also doesn’t make sense. It’s true that medical treatment in general, especially for mental issues (which are often seen as “less necessary” than stuff pertaining to physical ailments), can be inaccessible to poorer people. But that doesn’t mean that the training that psychiatrists undergo is bullshit, or that the criteria for issues like autism isn’t still extremely complex and unable to be “diagnosed” by a layperson.
That’s kind of like saying it’s “classist” to insist that an actual lawyer’s legal advice is better than some random friend who’s watched a lot of Law and Order, because hiring a lawyer is expensive. Or that it’s classist to say that a faith healer is just as good as chemotherapy for your cancer treatment, because the latter is expensive. The point isn’t that the professionals are full of shit; it’s that we shouldn’t expect everyone to have access to the professionals, and we should be working harder so that everyone does.
“a faith healer is not just as good” is obviously what I meant to say
Some very good points! To add to what you’ve said: asexuality is a lack of sexual attraction. There are many other kinds of attraction (e.g., romantic) which can be — but are not necessarily! — experienced by asexuals. I can’t speak for anyone but myself, but I have never experienced something that matches others’ descriptions of sexual attraction, and so I identify as asexual, even though I quite clearly experience other types of attraction. I believe this, in my case, is related to my sensory issues, which in turn is to something that some doctors have told me is ASD and some doctors have told me is not ASD. In other words, everyone’s experience is different.
(That was supposed to have “sexual” italicized in first bit. HTML fail. Sorry!)
I realise that asexual people can experience non-sexual attraction toward others, but the article seems to take “I’m hypersensitive and don’t like being touched by others, so I can’t get intimate with others” and then draw the conclusion “oh, i’m asexual” with no mention of any lack of sexual attraction. Drawing those kinds of correlations without any mention of a third factor (sexual attraction/lack thereof) seems almost like the sort of skeevy methods used by the mainstream media.
And I’m honestly unsure if this is the author’s intention, or if it was just the people responding taking those correlations and making them sound like causations, but mere hypersensitivity and a dislike for being touched impeding upon sexual intimacy is not inherently asexual, and the feeling that i got from the article was that that it was.
Honestly, I really don’t think one can make any sort of strong correlation with hypersensitivity/dislike for being touched and asexuality, because plenty of non-asexual people are like that, too, myself included (I cannot stand being touched besides the occasional hug, so I’d imagine that could impede upon sexual intimacy, but I absolutely 100% experience sexual attraction). I’m sure that there are a number of asexuals – even on the autism spectrum – who love non-sexual intimacy, such as cuddling, so really… I don’t think that makes sense as any sort of correlation, let alone causation, which is what the article seems to present it as.
(sorry in advance for any typos – it’s like 7am here and I can’t get back to sleep)
(It’s just, who wants to date a girl they’ll have to help cross the street, or find food?)
(The joke’s always been: I’m an Autistic Asian queer girl, so either I’m going to get a really good scholarship, or I’m going to die before I graduate.)
(I still can’t see myself making it to thirty.)
I might not know you (yet?), but I absolutely see you making it to thirty, and if you ever need someone to talk to or just someone to listen, I would be happy to.
Hello everyone! Thank you so much for reading my article. I’m happy that it has sparked a conversation on the intersection of ASD and queerness.
I enjoy reading all of your thoughtful responses, varying perspectives, and interesting life stories. It’s a testament to the infinite number of ways that identities can manifest and interact in our lives.
I just wanted to say thanks for leaving your feedback and I hope that we can all continue talking about important issues such as making the queer community more successful for everyone, regardless of neurological makeup.
Great article. I’d love to see a regular column on the intersection of queer and spectrum. Maybe one on bullying? I get so tired of NT’s who appoint themselves as social police and decide to mete out punishment to those who don’t conform to the rules. Unfortunately, for all its supposed sensitivity and PC-ness, this happens often in lesbian culture.
I’m really frustrated on a lot of the conversation around ableism in “social justice” circles in general, especially coming from able-bodied/neurotypical people. Usually, it focuses on relatively small issues, like labeling every possible insult word “ableist”, and it makes it seem like that’s the only problem – and to people who aren’t willing to buy that “stupid” is ableist, that then, ableism in general isn’t real. They totally ignore the much more pressing issues that the disabled community has to deal with, like accommodation issues or legal rights.
Not that language is nothing, but I think that LGBTQ people can agree that stuff like ending discrimination laws and helping homeless LGBTQ youth is a more pressing issue than getting teenagers to stop saying “so gay” and “f*g”. Same with ableism and language. But since that’s all many neurotypical know how to talk about, that’s the only thing that gets discussed.
As an autistic queer woman, I’d love to see more articles on this topic on AS!
Another challenge of being queer and autistic – I went through a lot of social skills training as a teen. They help to teach you how to react in different social situations. All of the social situations given to me to practice were heterosexual interactions. This is obviously problematic, especially because many autistic people happen to strictly follow rules. So basically, I didn’t really understand that I was allowed to act in romantic ways with women until I was in my early 20’s. Then I had to go back and reprogram all of my heterosexual social lessons for it all to make sense to me. I’m wondering if anyone else has ever had this experience too, and what I can do to prevent it happening to other autistic youth.
Yeah, that’s something I’ve found incredibly frustrating, especially in books specifically designed for people on the spectrum! They always presume heterosexuality; at least some general “social skills” books will give a nod to the existence of non-heterosexual people sometimes, but I’ve never read a book on autism specifically that did that. It makes it irritating, because I feel like my social skills issues are more difficult in navigating the much-smaller and more fishbowl-ish queer scene than in heterosexual dating (and I do both, since I’m bi). Men who like women are a dime a dozen; women who like other women are harder to find, and you have to specifically seek out queer dating. And a woman can’t assume she’ll be “pursued” the way it’s traditionally done with heteronormative gender roles. So those social skills are that much more important for queer women.
It’s bizarre especially when, according to my therapist, he thinks that bisexuality is more common in people on the autism spectrum than the general population (though I don’t know if there’s that much data on this or if that’s just an anecdote based on the people he’s seen).
I would like to disagree with what was said in the comments by somebody: that you can not speak about autism unless you have an official diagnosis. I self-identify as autistic but mostly I just say “I am autistic.”
I seeked out a diagnosis in high school but I was told that I was not autistic “because I did not flap my hands or do repetitive motions.” I think my lack of diagnosis so far has to do a lot with gender bias and lack of understanding about autism in general. Those who are considered experts on autism aren’t always the most knowledgeable or aware of what autism is at all. Number one thing about autism is that it is not about your outward behavior but about what is going on in your head. After all, it is neurological.
Although some may disagree with me, I think it might be nice for self-identifying to be acceptable. You know what goes on in your head better then anyone else.
This is not meant to be an attack in any way, I am sure that I thought like that at some point myself.
I’m also someone who wasn’t diagnosed until adulthood because of gender bias and because I didn’t fit the more obvious criteria (in my case, that I make eye-contact when I talk to people). However, the fact that diagnosis is sometimes denied based on biases doesn’t make self-diagnosis legitimate.
The fact of the matter is that, even removing issues of gender and so on, autism is really tricky to diagnose, because there is no consistent set of criteria. It’s an “I know it when I see it” sort of deal. So even professionals who aren’t biased in any way can struggle to diagnose it, especially in people on the extreme “verbal” (formerly known as “high-functioning”, though that term is problematic) end of the spectrum. That’s what makes it different from PTSD, depression and other psychological issues that Helle listed in her comment. Those have a fairly consistent set of criteria; autism doesn’t. The very fact that it’s referred to as a “spectrum” is a good example.
So if it’s that difficult for people who are actual professionals with degrees in psychology/psychiatry to diagnose it, that means it’s nearly impossible for people who are not trained to diagnose it in themselves. At best, they’re looking at a checklist of criteria that could vary a lot from person to person. At worst, they’re relying on stereotypes. You know what’s going on in your head better than anyone else, but when it comes to mapping it to a specific disorder, the professionals actually do know better than someone who has no training. Just like how you might know you’re not guilty in a court case, but a lawyer knows the best way to argue for it.
Neurological and psychological disorders are no different from any other medical ailment in this regard. If you don’t think it makes sense for what someone looks up on WebMD to have the same validity as what a physician says, it doesn’t make sense to say that self-diagnosis deserves the same legitimacy as a professional diagnosis.
And because so many “self-diagnoses” when it comes to autism are based on stereotypes, the fact of the matter is that when self-diagnosed people are allowed to talk over people who are legitimately diagnosed, they often end up oppressing them as much neurotypical people who speak over them. Helle’s comment about her experiences debating with “self-diagnosed” people is a good example of this, where they flung ableist slurs her way and overall basically completely dismissed her right to talk about a disorder she’s been diagnosed with since she was a child.
So while self-diagnosis is a good stepping-stone to finding a real diagnosis, I really think it’s better for people to continue to seek out a psychiatrist who can diagnose them rather than try to do it themselves, because of the complicated nature of autism. If someone said that you have to “flap your hands or do repetitive motions” to have autism, they are indeed incredibly mistaken about the nature of it, as many (perhaps even most) “verbal” autistic people don’t do these things. But that doesn’t mean professional diagnosis is bullshit – just that THAT professional is. I had several “negative” diagnoses until I got a positive one due to similar misconceptions.
Great article! Thank you for this well-written perspective piece!
I’m no professional when it comes to knowing about autism or working with people who have autism. I do not professionally work with individuals with ASD. To my knowledge, I don’t know anyone else who is or might have ASD. At least, no one else in my personal life has disclosed it to me. This is my singular experience as someone who is very much in love with and engaged to someone who exhibits a lot of the same behaviors and experiences a lot of the same, if not all, the same feelings and interactions laid out in this article and in the comments. This is my singular experience of learning, understanding, and loving.
My fiancée sought an official diagnosis but she throws the idea around from time to time. Even though I’ve known her for some time and we’ve been in a relationship for some time now, this article was so helpful in keeping me mindful of her struggle and helping me to better understand how she experiences life.
I have certainly struggled myself to understand and we’ve had our difficulties. I completely related to the part of the article from one of the interviews about going to shower and expecting her to follow me or ask if she could join; I had a lot of those kinds of moments when we first began our relationship, which would frustrate me and lead to emotional scuffles that luckily ended quickly. I used to interpret that as her not caring enough or not putting enough effort into our relationship or me feeling like the single author of our story. But what I learned was the best way to deal with my misunderstanding was to just listen. It was a new development in the listening skill set because I was hearing her out as she was learning about and working out her austic-like experiences and behaviors (some of which was linked to or made worse by her social anxiety as well).
I came to realize, much like this article explains, that the way my fiancée thought and behaved was not a deficit but just the way she interpreted the world. She saw the world differently than I did; there are things that she sees that I don’t or thinks about in ways I don’t. Just because there might be a label to the way she thinks and experiences the world didn’t make her any more distant from me who saw the world differently, too. I’m learning, too, with her. Instead of treating it like a disability or something that fundamentally separated us, I’ve taken it as an exercise in learning even more about diversity and communication and the parameters of what diversity means and how I could be a better communicator. I live in one way and she lives in another. Sometimes they converge, which is easy. Sometimes they don’t, which is difficult but we adapt and adjust. Just like I wouldn’t want someone to minimize my experiences, I don’t minimize hers.
I also do my best to see all the positives in the way my fiancée is. She apologizes a lot for rambling but I find it endearing because, to me, her rambling shows curiosity and passion to learn and know about things, which I appreciate. Her clumsiness is funny in that comical kind of way and is real and human to me. We all stumble and say bizarre things because who’s perfect?
This is beautiful. You sound like a great fiancée and great human being period. Understandably, it can get very difficult for both those who have loved ones on the spectrum, and those who are on the spectrum themselves, to understand certain behaviors. When it comes to relationships that we choose, a lot of people tend to take the “easier” way out and leave the relationship during difficult to understand times. For you to not give up so easily, shows a real heart and love for your partner and a great amount of character. I think it’s wonderful that you’ve been able to look at your differences as just that-differences-and be open to seeing how she views the world. It’s reassuring to be reminded that there are good people out there who continue to love who they love despite minor bumps in the road or differences. Wishing you and your fiancée the best.
You’re so sweet! Thank you for those kind words :)
I am very very happy this article was written. I feel nothing but happiness at the fact that there are other people out there who understand what its like to be on the spectrum and queer. Honestly I would love to have more articles and recourses and spaces for autistic queer people and articles like this make me feel like I belong in this community. Its so easy to feel left out when you don’t understand everything thats happening in a room, but the fact that other people are having the same issues makes me feel like I’m just in on a different joke, not left out completely.
My official diagnoses is Aspergers, and even though the term is now obsolete, I find it hard to think of myself as autistic. It was always a “them vs me” thing in which I felt like it was somehow “not as bad” to have Aspergers. I know how messed up that is. Its things like these where I see depictions of autism that aren’t tainted with the word ‘retarded,’ and that show people that I can relate to, instead of the exhausting number or boys paraded before the media as the face of autism that make it world easier for me to get rid of my own stigmas and join my community.
I agree with previous commenters that it would be amazing to have a regular ASD related column. It would be wonderful to have a space to connect and talk about things that are relevant to us and also maybe help each other out. What @EngGirl said about socialization classes focusing on heterosexual interactions makes me feel like we should find ways to learn and teach what we know about interaction in queer settings. I think the best way to teach someone with ASD is to have ASD yourself. we understand more closely how each others minds work and while everyone is different, I don’t think many of us want neurotypical people continuing to tell us what qualifies as ‘functioning’ in society. lt would be really cool to cultivate an environment of queer autistic people teaching queer autistic people how to be queer autistic people navigating culture built for neurotypical people. (a How To Talk To Girls For Autistic Homos article would be really nice too)
Thank you again for starting this discussion.
This is awesome and important! Very well written.
Thank you so much for this! I was finally diagnosed last year, at age 25, and it put so much of my life into perspective. At the same time, I am trying to navigate new social circles, having moved to a new city in August. How much do you disclose to people you’re hoping to become friends with upon first meeting? (This is not a rhetorical question. I honestly have no idea what a neurotypical person would do in this situation.)
I’ve gone to three Autostraddle meetups since I got here to Boston, and while I’ve really enjoyed myself and was glad I went, there’s always a part of me that feels awkward and a bit overwhelmed. I really want queer community here, but I’m still learning how to figure out if people like me and want to be friends or if they’re just being polite. This may sound like something that’s so basic, or like something that’s just an insecurity, but I genuinely have no idea most of the time. It’s a learning curve. I’ve had more than my fair share of faux friendships or friendships that went south because I didn’t know how to navigate the social climate and couldn’t read other people’s signals – and those were all before I knew I was on the autism spectrum, so you can probably imagine how confused I was.
I don’t advertise that I’m on the spectrum. I try to “pass” most of the time. I’m lucky in that I have a lot of learned behaviors from a very young age that make it easy to pass. But that can also be a double-edged sword, as I’m sure anyone here who’s had to pass in any way can understand.
I’m also incredibly lucky to have a fiancee who is truly the love of my life, who understands me far more than most people ever have, who supports me completely and is there for me throughout my journey. A lot of the dating things in this article probably would’ve been great for me before we met, but I’m more concerned with the platonic social stuff right now. I wish we could have a meetup for autistic queers. I feel like that would be so great, but I doubt there are enough of us here in the same city that it would work.
I could probably write a million more words about this, but this comment is rambling enough, sorry! I tend to do that, online and off, and I feel like I’m more all-over-the-place than usual here, because I got so excited to see anything about autistic queer girls, especially on my favorite website. Anyway, thank you again for this article and thanks to Autostraddle for publishing it! I hope this won’t be the only one of its kind on here. I feel a little more represented right now, and it feels really good. :)
I’m so happy that you shared
I was once in bed with one of these old/ongoing-inverted-comma-wink-wink-friends, lack of clothing, the whole shebang (pun not intended). She asks ‘What is it?’ and I reluctantly mumble that ‘I’m trying to what work out what it is you want.’
I have a sort of internal dread of these encounters (any level of physical encounter, really). I can never enjoy them as I should, because all it is that I’m doing throughout the entire ordeal is trying desperately to work out what it is that she wants or is intending to happen. To the extent that I’m not really present. My mind simply does not relent; it’s at hyper-speed analysing all variables and possible intentions. So I freeze up and that coupled with not having any idea of what to do with my body or where to place myself results in quite the rigid and awkward little situation. Thus leading to inevitable analysis of that fact, anxiety over this not being what I am intending or really actually want and that it probably isn’t enjoyable for her either and so on and so forth, it spirals into oblivion. In my mind at least. In fact it usually works out quite alright, but there’s always that hurdle. In hindsight it is all very clear to me, but in the moment my mind gropes more tenaciously than hormonal teenage boys do their own bundle and stalk.
Subtle signs are just that. I can tell it’s a signal, but I don’t know what it’s for, so I have to ask and frankly that ruins the mood a little. But thankfully my winkwink-friend finds it charming. Most of the time.
On a side note to all of those wonders, I’m intrigued to know what others’ experience with sympathy is. I feel empathy very strongly and I am sympathetic, however I can quell sympathy incredibly easily and I cannot physically and outwardly manifest empathy or sympathy and I never have been able to. It completely alludes me. It can be rather frustrating because I really want to help, but I just have no f***ing idea how to do it. Cue sitting awkwardly in silence giving practical and blunt advice or insight. This is not really the biggest of my concerns, it’s more that because I don’t show many of my emotions physically very often, or I don’t respond with physical emotions, people assume that they simply do not exist and will treat me as unfeeling, which hurts, rather ironically.
I have come to realise that my ease in most day to day social interaction is a relatively calculated knowledge of what is socially necessary or inappropriate in certain situations and what is required in others. ALAS, this can’t always cut it.
I’ve rambled on slightly, my apologies, but I’ve never actually written this down before, so I’m vaguely flummoxed and this is all probably utterly disorganised and/or incomplete and bitsy. Nevertheless, sharing and all that.
This article clearly struck a nerve and I’m very glad to have come across it. It was needed.
Thank you so much for writing this article. Nice to know I’m not the only one awkward at this coupled with severe sensory issues when in public. Forget facial clues. Oh, it’s impossible there with folks I’ve known under a year. Takes me time to figure out patterns of behavior. Once that has happened I’m pretty good, but until then it’s like trying to read the expressions of cardboard. Ugh. Add overlapping conversation, buzzing overhead light, and other sensory stuff and my time is limited in this surroundings. My friends told me my dating profile looked like a work resume. Well, hell, I write a good one of those. Anyhow, thanks again for writing this.
I’m autistic, and I can relate to most of this! Clubs, bars and queer events are especially a sensory hell for me, so it’s hard for me to find a date. :(