Dear Captain Awkward:
I’ve always been a little different from most people, and it was only about a year ago that I was finally diagnosed with Asperger’s Syndrome. This came as a somewhat crushing blow to my already dwindling self-esteem. I’ve honestly thought about suicide numerous times because of it, It just makes me feel as if I can’t connect with people on a meaningful level, regardless of whether that’s true or not. I can’t help but notice this MASSIVE stigma against people with Asperger’s, people saying we’re shut-ins, that we’re all like “Chris-Chan” or have some other manner of extreme antisocial tendency. I find that I have none of these, in fact for the most part I’ve gotten along just fine with people, even if I have a little bit of trouble making friends in the first place.
Anyway, the problem is that I feel as if I’m lagging behind my peers in terms of emotional and social maturity. I’m off to university in September and I don’t have even the slightest idea of whether I’ll be ready for the environment there or not. High school left such a negative mark on me that I’m worried that what’s left of my attitude there will carry over into university and the real world.
Tl;dr, I’m mildly autistic, over the years people have driven me to hate myself for it, and I have no idea what to do now.
Dear Mildly Autistic:
I’m so sorry you are having so much anxiety and depression around your diagnosis.
- Please don’t hurt yourself, and please get your parents to take you to a therapist who can help you with this.
- Hopefully with some time you can see the diagnosis as a helpful way to describe some of the things you’ve been struggling with all along. You’re not broken! There’s a reason you’ve been feeling the way you do.
- I don’t know if this is comforting to hear, but pretty much EVERYONE has anxiety about starting university. “Will it be worse than high school in some ungodly way I haven’t anticipated?” Some of the pluses are that university is voluntary, you get to study subjects you are passionate about as hard and as much as you want, and that there will be a whole crowd of new people who are also anxious to find their place and make friends and an environment of social events, communal living, classes, and extracurricular clubs and activities designed to facilitate this. Being non-neurotypical may make the transition a bit harder or more anxiety-producing for you, but you said yourself that you get along just fine with people, so I really believe that you’ll get along just fine with the people at school.
But don’t take my word for it. When I got your letter, I put a call out on Twitter to see if some of your fellow Aspies would be willing to talk about their own experiences making the transition from high school to college, and this is what they had to say:
Jude, from AutisticDifferences.com wrote this for you:
For my entire life I’ve felt odd and out of place. It’s as though they can sense it in us isn’t it? The masses see us as peculiar individuals who should be avoided because there’s something not quite normal enough about us. I’ve come to find that this is fear in others. People have told me that I’m intense and that I have too much complexity about me to be bothered with at that opening stage of friendship. I find that a lot of people with Asperger’s Syndrome are described this way. I’ve also heard the same about celebrities (*kanye shrug*).
Negative stereotypes can have a huge affect on people and I can’t blame you for feeling badly about yourself after being the victim of them. When I find myself in those situations I try to think about what I would say if I were in their place. I ask myself “why did they laugh at me” or “why do they think that robot dance looks like me…” often the answer is that they don’t know me at all. A great deal of people get through life lampooning and satirising each other because it takes the attention off of their oddities and places the interest on yours. It’s a cheap move, but in the short-term it works.
You, sir, are the beginning of something amazing, and it scares people. It’s not because you have Asperger’s Syndrome, but because you have an overwhelming depth and complexity that makes people want to know more about you, albeit from a distance initially. Often, from your point of view, I’m sure it looks as though they’re not interested in you at all. Sometimes you can intimidate someone into a fight or flight response and their comedic attempt at fighting is what you’re seeing in all of these negative stereotypes.
I, too, have been suicidal and know that you’re not joking. I even made a couple attempts on my life. I know what it’s like to feel like an alien on your own planet and feel like everyone has me all planned out before they even speak to me. People like that are not worth your time, and if they are worth your time, tell them they’re wrong about you. A lot of times they’re reacting with that fight or flight mechanism and if you call them on it, they’re dumbstruck. The best come back to the negative Aspie stereotypes is to laugh and say “it’s funny because you actually think that!” (THIS IS AWESOME. -CA) Nine times out of ten they’ll stop laughing about it and look confused. That confused look is priceless, my friend.
The point is, if you can hold on a few more months you’re going to start seeing the good side of being an individual. The lag in your “social maturity” will no longer matter. You’ll make friends that mean much more to you than friends have ever meant; friends that may call you Sheldon, or laugh at you when you do something they don’t understand. Ultimately they’re YOUR friends that you made while being yourself. They aren’t the jerks that think you’re a written book that they’ve already read.
Finally: College is a blast. It’s like a four-year intro to adulthood featuring the weirdest people you’ll ever know. Enjoy it!”
Youri , Jude’s blogging partner and Stupid Robot Comics creator, added:
“First off, it’s not true. There are plenty of people with Autism/Aspergers with friends and more. But I understand the feeling. I have it too. I feel like I don’t know anybody in this city, aside from family, and it sucks.
But you’re going to University. You’ll meet new people, make new friends and if they’re really your friends, your Asperger’s won’t matter.
You’re not a stereotype, you are you.
Look at University as a new start. A new place where you can be you. I’ve never been good at school, but I did have the luck of very supportive teachers. I hope you will too.
The big issue seems to be that you feel left behind emotionally and maturely. I 100% understand. I’m 27 now, and I can still act like a child sometimes. And that’s fine.
Don’t think of it as a weakness, or lagging behind. It’s a huge benefit. For example, I can get crazy excited about things. Most ‘mature’ people don’t.
High school is a horrible place for all of us. People are ALL going through changes, and they take it out on others. Mostly, anyway. Don’t feel bad about it.
Here’s a thing people have given me as advice, but I haven’t tried out yet. Say hello to someone, maybe someone you see more often, on the street. Maybe a neighbor. It’ll help make you feel better.
In short, you’re a good person. Not lagging behind. Not a stereotype, but you. Don’t forget that.”
Two other blog readers also contributed their thoughts anonymously. Here’s the first one:
“My diagnosis is ‘autism,’ not Asperger’s, but it’s called a spectrum for a reason. First, let me say this: diagnosis is not destiny. I realize getting a label can make it feel like things will never get better – like you’re miserable because something in your head is broken and can’t be fixed. Please believe me: that is not the case. You’re miserable because you’re in high school. High school is all about social rigidity; people who are different, especially socially different, suffer there. But you will graduate soon, and college is nothing like high school. (Real life is also nothing like high school. I have no idea to this day why we put people through that shit; it’s not like it prepares you for the rest of your life.)
If personal anecdotes are useful to you – I, too, was miserable in middle and high school. I was a weird kid, queer and autistic and alone, and I made all the bad choices. (Drugs! Really stupid sex! Truancy! Crime! Seriously, I tried it all and it didn’t help. If you’ve managed to avoid any of this, good on you. My suggestion is to keep that up.) I attempted suicide. I engaged in many forms of self-harm. In short, I was really fucking miserable, and I flailed around helplessly, trying to find some fix for what I was sure would be a lifetime of pure awful.
Then I went to college, and – really, for me, things were different basically from day one. My life has been on an upswing ever since. I did all the things I wasn’t supposed to be able to do. I made friends. I had girlfriends. I got married. I held down a job until I quit to stay home with my (amazing) kid. In short: I’m 38. I’m happy, I’m successful, I’m as social as I want to be: life is good. My diagnosis wasn’t my destiny.
And I can already tell that will be true of you, too, because you’re surviving high school. You’re reaching out for help. And, as you said, you get along with people.
Get through this and the rest of it will fall into place. You’ll either catch up or figure out work-arounds in the areas where you’re lagging, and you’ll be able to build the life you want.
Hang in there. The better part is starting soon. I promise.”
And finally, from Twitter:
Okay, when I was your age, perhaps for the best in some ways, nobody had ever heard of Asperger’s Syndrome, so while there was nobody to tell me “well we know what’s going on, and there are exercises and support and meet-ups,” there was also nobody to box me in as a stereotype either.
But anyway, college. I’m pleased to say, with a little fiddling, I managed to make college absolute hog-heaven for someone of my particular neurological tendencies, and in fact I find it hard to stay gone for very long. There are a LOT of social distractions, but for me, they mostly weren’t as interesting as the classes, and that made me special. Professors liked me because I was extra-on-top-of-things thanks to evenings spent enjoying the hell out of the textbooks. Classmates liked me because I knew things, and enjoyed telling stories. I made several desperately important life-long friends there.
After college but before my current gig working on my Ph.D, I landed a very solid-paying job in Portland and spent a few years enjoying the HECK out of having my own apartment all to myself, and between coworkers who reminded me more of me than anyone else I’d met before and a fresh batch of friends with AWESOMELY weird habits, skills, and tabletop gaming campaigns, I wasn’t just “not a shut-in,” I was downright socially thriving. (These days I’m usually a little stressed, but I decided to get a Ph.D, so that’s my own dang fault.)
And they call us “lagging in emotional maturity” but when I was in college most people were just as confused and overwhelmed with their circumstances as I was, and the important stuff? The keeping your own time and remembering to take care of yourself and generally avoid the internet long enough to study for a midterm? I was READY for it.
Bet you are too.
Best of luck,
PS: Choose your pseudonyms carefully, they’re for life 😉
Letter writer, I hope that makes you feel a little more hopeful. I’m going to open the comments up to more stories like this. I really want to keep this thread “BY people with Asperger’s Syndrome, FOR people with Asperger’s syndrome” as much as possible,” so maybe our kind-and-awesome-but-neurotypical folks can hang back for a bit.
103 thoughts on “#303: “I was recently diagnosed with Asperger’s and I’m kind of freaking out about it.””
Not an Aspie here, but I just wanted to throw out that if you’re headed to college they should have some sort of Disability Resource Center for students. While it’s got that big, scary word in it, Disability, it is a resource center for students with all kinds of disabilities including Autism. If they’re a good one, they can help you navigate the school, hook you up with like-minded folks, help negotiate with a professor who just doesn’t get it, and make sure that all those other departments on campus are following ADA regulations to a T.
Here is an example of a decent one from one of the many universities I attended: http://drc.arizona.edu/
U of A also had a special orientation session for those with disabilities, so you didn’t have to go through one of the regular orientation sessions if you didn’t feel up for it. Orientation is rough enough as it is, and having to go through it with a bunch of people who don’t get it can be too overwhelming for some.
Great, specific, relevant, and on-topic, thanks.
What I’m trying to avoid is a montage of NT people complaining that they were big nerds and worried about college, too, so buck up little camper! Since I covered that in my own intro to the post. 😉
And please accept my retroactive apology for same. I couldn’t help but think of my pal who got diagnosed in her 30s and how much she has found it clarifying and helpful.
I think the thing that I fear is a “I’ll know it when I see it/delete it” kind of thing. Carry on and thank you.
I want to second this, as an Aspie! Everything Anonymous today said is absolutely true. Also, if you do have issues because of AS the disability service will often be your first port of call. For instance, the disability service at my current uni offers 1hr/week sessions with either a sort of “mentor” older student in the department or a worker from the National Autistic Society as a default for all students on the spectrum. I went with the NAS option and it was really good to have someone to talk over my week with and help me with timetabling, paperwork, drafting e-mails, and that kind of thing. Later they put me in touch with someone I could hire for domestic help because I was seriously unable to keep on top of things on my own, organised more specialised help than the NAS worker, and are most likely going to help find me a therapy spot for CBT. All of these are amazingly fantastically useful things! (On the therapy front: it may be worth seeing if you can go through the disability service for this as it may get you fast-tracked and get you a therapist who is definitely familiar with AS and the issues, and avoid things like “you have four appointments and that’s it”. I haven’t had particularly brilliant experiences just going to the uni counselling service.) My previous uni’s disability service couldn’t offer official support but really helped me through the diagnostic process; I’m pretty sure I wouldn’t have my diagnosis if not for them. Seriously, I love these places.
Yes, it does mean that you have to face the scary word “disability”, but honestly I’d suggest you do that anyway. Although figuring out I had AS was more of a relief for me, I had a pretty awful experience when I worked out that certain issues I was experiencing were actually AS-related – oh god what did you mean they weren’t ever going to magically disappear my life was over, man! Learning about disability rights and models of disability beyond the medical/tragic *really, really* helped me deal with this, was a serious boost to my flagging self-esteem, and gave me a much healthier approach to other AS issues as well: nowadays identifying as disabled is very much a positive thing for me, and I’m much better off in many ways than I was before.
I understand this discovery/diagnosis/label may feel like a curse just now. I hope you might also see it as a key to some things that didn’t make sense to you before.
I have a good friend who was diagnosed with this as an adult, only after her child was diagnosed. It was like a big ol’ light bulb went on for her. She finally understood those big gaps she’d felt her whole life, such as when other people cared intensely about social subtleties she’d never given a rat’s ass about.
It has been immensely helpful to her with her son, too, because as he grows up together they are discovering (and mentally cataloging) a whole bunch of things that fall into “we don’t get, but other people do, so that’s why this is weird to us” category. Knowing that there is a real reason behind their differences seems to have made this easier. She’s glad he knows this now, instead of being bewildered by other people like she sometimes was.
I knew her for years before the diagnosis; I never thought of there being anything wrong with her, and I still don’t. Yeah, she had characteristics that made her different from a lot of my friends, but she was no less likable (or lovable) for it. Certainly no less successful or happy. She is who she is. Just like you are. It is an attribute, not a disability.
Hang in there.
I’m still mulling what to say apart from ‘yeah, college was a lot better for me than high school, although I still didn’t have the diagnosis because I’m a bunch older than the LW, and I had a lot of friends from geeky summer camp in middle school who turned out to be jerks in college’, but I wanted to quickly say that Jude seems to have assumed that the LW is male (“You, sir, are the…”), which I wouldn’t assume to be the case *points at self*
I’ll probably post later with musings about what being identified as Aspie has meant to me.
Hey, the LW uses a male name as an email address, so I described him as male when I passed the letter on to Jude. Sometimes I have information that actually does allow me to make some decent assumptions about this stuff. LW, if I mis-gendered you, I apologize.
Oh, ok, sorry. Carry on.
(I guess it’s a sore point for me, still; the assumption that Aspergers/Autism is a thing that only guys get has hurt me a few times.)
It’s ok! A) My box if full of letters from autistic ladies. B) Did you get the part where Jude herself is female?
*blush* *slink* no… I didn’t see that. I thought that I had clicked on both links-to-replyers and thought that there wasn’t gender information, but I guess I just hit one.
Actually I’m agendered, but I really care about what pronouns are used to describe me, I’m biologically male, but I don’t really feel like either gender. Feel free to use whatever, zie is my personal preference, but it really doesn’t matter.
Thanks for the reply Mercy!
I am also a woman on the Autism Spectrum. I don’t assume anyone is male or female just because of a diagnosis!
Please due post later with your input on what being an Aspie has meant to you!
Dear LW, I am where you are right now in some ways. I received a diagnosis of Asperger’s a year ago when I was 23. For me, the diagnosis was a bit of a relief, too, since I had previously been in group therapy for borderline personality disorder and depression after attempting suicide at age 21. Therapy for BPD was all about pushing to get me out of my comfort zone, which led to meltdowns, yelling at therapists, door-slamming, public head-banging etc., because it turns out I don’t have BPD at all. Still, it’s a hard diagnosis to accept, hard to accept that it’s not going away, and I spilt a lot of tears over it and still find it depressing at times.
But there has been one thing that has made all the difference in the past year: one awesome therapist, who himself has a son with Asperger’s and who was actually the first to recognize that I was not BPD at all, but autistic. Having the time to talk about this diagnosis, about my sadness and difficulty in accepting that it is true, my worries about the future — it has been invaluable. He is also there to brainstorm with about problems and about how to change my approach to life to take this diagnosis into account (e.g. minimizing outside stressors, like busy shops or a noisy apartment building, very practical things). I am going back to grad school in the fall, after being on disability leave for two years due to depression, and he will be there to talk through the social issues I will undoubtedly encounter. I am under no illusions: moving, going back to school, living on my own again, it will all be difficult. But it will be different from my last go at college, because I know better who I am now, and I will have HELP. I will have a Team Me, even if it’s kind of small.
Seriously, I cannot recommend therapy enough. But make sure it’s someone you really click with, don’t be afraid to dump a therapist and find someone else if you don’t. I have always been so lonely and just having a therapist I connect with so well has made such a difference.
Also, I don’t know if this is an option for you, but I also recently participated in a brief group therapy with other autistic young adults, where two psychologists explained some stuff about what autism is like (I found this part useless, to be honest) and where, more importantly, the six of us could talk about our experiences. Now, I am too socially anxious to talk much in such a group, but I still found it helpful to meet others with autism, to have a real-life example of how different autistic people are from one another, and also how different their particular problems are. At least two group members had a rich, fulfilling social life, friends-wise; one was married and had a kid. Having autism doesn’t preclude also having meaningful connections with others.
This has gotten long, sorry, but it is a topic that is on my mind often, as well.
I was diagnosed as an Aspie somewhere in high school, and even though I always want to argue a bit about it – for example, one of the reasons for the diagnosis was a supposed inability to grasp metaphors, when really I just liked how not responding to things like “What’s up?” in the expected way surprised people – I know I fit in a lot of ways. Missed connections being the biggest one.
I’ve never really had close friends. I actually got a formal ‘we were friends, but this isn’t fun anymore, let’s break up’ letter once, because the other girl had changed and I’d stayed the same. In college I got what in retrospect I can see are a lot of friendly overtures, but I never knew how to take people up on them, so it was all friendly-acquaintances-chatting-before-class. When I found out my wallet had been stolen one of them walked me back to my dorm, and he and his girlfriend went and checked up on me later. And I didn’t do anything about this. I didn’t even recognize what the gesture meant for years.
That college, which in retrospect was tiny and had a lot of friendly people in it, got too expensive and I transferred to a big uni where I was another face in the crowd. People got blank and hostile when I complimented their T-shirts before classes. The one person I really liked talking to and thought of as potentially a friend then turned out to be offensively misogynistic, so I started avoiding him. I graduated without any more inter-personal connections than when I started the first school.
College is a chance for something new, as the cliche goes. It can be really, really hard to take advantage of that if you don’t know what’s going on, even if things are in your favor. People say it’s easier if you know. I wish I’d known.
Dude. I’m NT and pretty much all my friends have Asperger’s. For real. It is so not a thing to contemplate suicide over. They are interesting people, they are kindly people, they are really not that much more effort to hang with than anyone else, even at their most Aspie. Most of them are well-educated. Most are happily married. Some of them are quite successful professionals. You are cool.
As much as I appreciate comments about positive experiences, I also feel like this comment is kind of dismissive? Even though you probably didn’t intend it to be? For me as an Aspie who has definitely Not Been Okay and who knows others who are also definitely Not Okay in some ways because of their autism (whether it’s loneliness or being unable to complete college due to extreme, unrelenting test anxiety or severe difficulties in executive functioning which make it hard to impossible just to keep the house clean, to pay bills on time or just not misplace all their stuff). I don’t want to be all doom and gloom, but for many people with autism this is still a disability. It’s not that I expect to be miserable for ever and ever, but part of accepting and coming to terms with my diagnosis has been accepting that I need help and that I cannot be cool without help.
Speaking only for myself, if I had to choose a thing in my Bundle O’ Brainquirks that’s actually affected my life negatively, it wouldn’t be “social signals” or “eye contact” (overrated imo, still fell in love a bunch and had friends without wanting to look at strangers’ eyeballs all the time), it would be “executive function issues”, and *that* is actually the place where I would tell someone exactly like me (not just ASD-ish, but ASDish like me) who is a teenager to start building strategies and reading up and looking for support. Executive function issues can just look like being disorganized or learning tasks slowly or being bad at things, and once someone actually explained to me what they were and how they functioned I was able to start building workarounds, but until then I pretty much just beat my head against sequential tasks and cried a lot.
I offer you and previous commenter an “oh god executive dysfunction why” high-five. Between “difficulty making friends because difficulty reading social norms and allistic body language” and “difficulty making friends because cannot get out of flat to meet people because cannot put on shoes: process too complicated” I know which one I’d like to get rid of.
YES. “Why were you twenty minutes late?” “Well, I had my housekeys in one hand and my shoe in the other and no shirt on and then I guess I got stressed out about where to go from there and frankly I had to sit down for a while.”
Not all people on the spectrum have this particular trouble in this particular way, of course, but it also definitely appears nowhere in peoples’ stereotypes of how ASD works and I really just thought I was bad at things even though it affected every area of my life profoundly and concretely. And seriously, once I understood that it’s just a class of neuroatypicalities and that nothing about the way NT people learn these things will make sense to me ever, I was able to start doing things to help myself immediately.
Incidentally, like most brain quirks, there are also things I’m surprisingly good at that I swear come from the same place. For instance, the fact that I tend to see everything in a process happening at once in my head made me good at things like mapping how information is distributed in a system, which made me valuable at my job and which I think is super fun.
This actually is pretty much me, I never had a term for it, but I’ve always been hideously disorganized, maybe I’ll try putting together some strategies for it.
Seconded. NT-splaining is condescending as all hell, even when it’s well-intended.
I’m really sorry. I didn’t mean to NT-splain and rereading my reply, I can see that’s definitely what I did. I guess the suicide thing freaked me out and I was trying to be really upbeat about the possibilities, and I totally failed to acknowledge that it’s seriously a disability and seriously difficult. I did it wrong. Again, I’m sorry.
Thanks for this, it’s a classy apology. Bygones!
Sorry, I missed this before. “Some of my best friends are ______!” isn’t really working for you, TeaSugarSalt, even though I know it was kindly meant.
I always considered my diagnosis as an explanation, not a sentence. College seems to be a lot more accepting of “weird” than high school, especially if you stick with other academically-minded folks.
“I always considered my diagnosis as an explanation, not a sentence.”
I’m an NT person with multiple close friends/family members who were diagnosed with Asperger’s Syndrome. I also teach teens, including many with a diagnosis on the autism spectrum. From what I’ve seen, it is quite usual to struggle with what it means to “have Asperger’s,” though like all people everywhere, each person experiences things in his or her own individual way. The most common theme I notice in those who have overcome this struggle, is learning to see it as a better understanding of yourself. Asperger’s is an explanation, not a sentence or a label. It’s knowledge, period. I know that’s not just some switch you can flip: “Now, see it as positive. Go!” But if you consciously start to frame it in your mind that way, eventually it should begin to take hold.
I cringe at the word “weird” (though I know what you meant, mms), but I agree that most universities are far better at accepting diversity than high school. (And if they aren’t at least many of the towns they’re in do.) Seek out groups or experiences that cater to your interests. The most excellent part of college – of being an adult, really – is that you get to build your own tribe. Start recruiting. Seek out people who like the same stuff you do. Find activities or clubs on campus you enjoy. Go on Meetup.com and search for people with similar hobbies or interests to yours. Recruit for your tribe.
I don’t have friends with Asperger’s. I have friends who share my love for books and dogs and exquisitely perfect grilled cheese sandwiches and think that one scene at the end of Fellowship where Aragorn’s all slo-mo as he casually swivels up his sword to take on the Uruk-hai horde while Howard Shore brings the genius is the MOST AWESOMELY BAD-ASS THING IN THE HISTORY OF THE GODDAMNED WORLD. Also, some of them have an Asperger’s diagnosis. That doesn’t really affect our friendship in any way, other than it being one more piece of knowledge I have about them.
Sure, my friend Alec prefers to watch movies at home on Netflix because the loud sounds in a theater bug him. I can roll with that. It’s really no different than knowing my friend Amy has the tiniest bladder ever and thus needs to sit along the aisle at the theater because guaranteed she’ll have to go at least twice during the movie. Everyone has quirks. Friends adjust for each other. (Thank goodness, because I named my tribe the Justice League and refer to them all with superheroesque nicknames with a nearly fanatic level of commitment. To which they have all adjusted with admirable grace and humor.)
I agree with the Captain that nearly everyone can relate at some level to insecurities about university life. For me, it was insecurity around my need for an unusual amount of personal space. College wasn’t easy in that regard, but I managed by adapting the best I could and recruiting tribal members who understood and supported me. I second the advice mentioned elsewhere in the thread to consider finding some sort of Asperger’s-friendly support group. Online, in person, or both. (I’m betting the people the Captain deferred to would be a good place to start.) The college counseling office was also helpful in giving me a private place to talk through my anxiety, so you might consider that, too.
The good news is, by writing to the Captain you’ve already proven you know how to spot awesome, supportive people. Continue to seek out accepting, thoughtful, interesting people and build a support network for yourself. (Not just because of the Asperger’s, but because everyone needs that.) Consider re-framing the conversation in your head. See the diagnosis for what it is: knowledge. And knowledge is power.
From what I’ve seen, it is quite usual to struggle with what it means to “have Asperger’s,” …. The most common theme I notice in those who have overcome this struggle, is learning to see it as a better understanding of yourself. Asperger’s is an explanation, not a sentence or a label. It’s knowledge, period. I know that’s not just some switch you can flip: “Now, see it as positive. Go!” But if you consciously start to frame it in your mind that way, eventually it should begin to take hold.
I have a *lot* of issues with talking at all about ‘overcoming’ a struggle to understand a diagnosis — it implies that there is some sort of endpoint one can arrive at, that that endpoint is the same for everyone, and that all other conclusions are, ultimately, wrong. And — for that matter — it implies that arriving at that particular interpretation of some sort will result in a positive outcome.
There are people with physical disabilities who embrace their disabilities and see it as part of them. There are others — possibly with the same disabilities — who actively attempt to research and fund a cure. Yet others may try for technological solutions. If any approach is right, then all of them are right. Postmodernism doesn’t mean that you can select a particular viewpoint and declare that the rest of them result from some sort of cultural bigotry. If one position is correct, then so are the rest of them.
(Don’t believe in technological solutions or cures? Throw away your glasses. LASIK is straight out.)
Likewise, there are plenty of approaches to having an ASD — each of which could lead to a positive outcome in the right case. One might link them to the stages of grief (denial, bargaining, depression), but that would be misleading. Most approaches (depression, perhaps, as an exception) could result in a positive outcome — or they could result in disaster. The man who hates the idea of being socially inept and throws himself into social skills training courses — and thereby achieves some level of social competence — is probably going to be happier, ultimately, than the man whose pride in his ASD leads him to spend his free hours online with a community of like-minded individuals, dreaming of the day when NTs see them as actually superior and insisting that women who find his approach distasteful are bigoted.
Denial can, at times, be productive: Consider a person who loves to sing yet is almost entirely tone-deaf. They may accept this and stop doing a hobby they truly enjoy. Or they could ignore it. I was told once about a member of a filk singing group who was completely tone-deaf. He came back year after year. He got a bit better, perhaps, but the small improvements he made could never have justified the time he invested. But he was doing what he loved, and he made friends and a community because of it.
And one’s answer to the ‘struggle’ can change with time. There are times that, in retrospect, I really would have been better off going with denial. (“I’m a teenage girl! Wait, you just told me that I’ve *always* stood out socially and I very likely *always* will?” *miserable*) Bargaining has worked just fine for me sometimes (“Yes, I may be socially awkward and not have any real friends at work — but look at this mechanism I just resolved because I obsessively quantified *every* data set I had! Oh, wait — is that a *paper*?”), but it’s collapsed entirely at others. (“Yes, I may be socially awkward but I’m great at quantifying — wait, I don’t *have* data and, in order to obtain it, I’ll need to interact with a bunch of people who really dislike me. Yeah, this could be an issue.”) Anger is sometimes great (“I *hate* the fact that I can’t interact socially. I’m going to go out and change myself completely!”) and sometimes terrible. (“I *hate* the fact that I’m lonely! I hate the fact that nothing I do will make anything better.”) And there are *so* many forms of acceptance that I’m not even sure what it means. (Do I embrace my differences and thereby give up on an attempt to make things better? Do I accept that, yes, I’m different, but I can change myself? At what point in time does the latter approach become denial? What happens when the former is counterproductive?)
There are groups that will tell you that one approach is correct and the others are somehow ableistic. They claim to speak for everyone. No one ever seems to realize that the people out there who disagree with them aren’t going to join their organizations. No one ever points out that maybe the people who are the *best* adapted are doing something else entirely, completely mindless of any sort of political movement.
Pick your poison. It may change. It most likely should.
I’m very sorry if my choice of words offended you. I certainly did not mean to imply that there was any one “right” way to approach Asperger’s. Rereading what I wrote in the face of your comments, I see how it would be taken that way. Thank you for pointing that out. I’ll be more thoughtful in choosing how to use my words in the future.
To clarify, my words above were meant to apply only to the diagnosis itself, not how to move forward with a diagnosis. The letter writer described the initial diagnosis as a “crushing blow” and I only meant to say that, based on the individual experiences of the people I personally know, it might be possible to eventually feel a different way. I wanted to give the letter writer hope, not insult him with One True Path. I spectacularly failed at that and I’m sorry.
Sorry — I tend to be hyper-sensitive towards such things. Like I said, my relationship to my diagnosis is *quite* complex relative to the standard portrayal, and I am constantly irritated by people (experts, others with ASDs, or otherwise) who insist that my approach is somehow incorrect. (I have had some suggest that my attitude could be reconciled with those who lean more towards the “well, I like it and it’s part of me” approach. That’s at least a bit understandable. The people who actively attempt to *correct* me when I state my position — “You mean you don’t feel that … ?” — are, er, a little bit less understandable.) I can see it working for some people. It doesn’t work for me.
I might feel differently if the world were different but, well — the ASD community online may be many things, but it’s quite male-centric. You see this all the time in discussions of sexual harassment, for example — saying that men with ASD may accidentally violate boundaries is all good and well, but it means that those of who are less sensitive to such violations are placed at risk. (Also, if you really want to be disgusted, go look at — say — Wrong Planet’s “Love and Relationships” forum. I’d love to say they see me as a woman, but that would be putting it politely — as a twenty-something woman who is reasonably attractive, they see me as a piece of meat.) It’s quite likely a great support system under some circumstances, but I really don’t feel like I fit in at all.
(Also — and I’ve said this in different contexts — social theories of disability suggest that, if I work really hard politically and culturally, I might be fully accepted as-is by the time I’m, say, sixty or so. Approaching ASD as something that I can and should learn to overcome suggests that I could get laid on a regular basis by the end of my twenties. I really find the latter promise to be better than the former one. (*))
(*) I know, I know, they’re not mutually exclusive. But still.
No apologies necessary, LMM. You made an excellent point, and in the process you both improved my understanding of ASD and made me more thoughtful about my words. To me, that’s a good thing.
To which the aspie response is “exactly – mine was a number of paragraphs” 😉
I was offered the choice (by a mental health professional I was working with) to pursue an Aspergers diagnosis when I was an older teenager and I decided not to, partially because I *was* afraid that I would be pidgeonholing myself as “bad at social skills” and never improve. I still don’t know how I feel about that, but either way, a diagnosis that is actually right just describes you, it doesn’t add anything new to who you are. If you’re happy with the way you form friendships, a diagnosis can’t take that away from you.
I did have problems with some of the social signaling involved in making new friends in college, enough that I went in and out of counseling to work on it, which helped and was wonderful (I do very well in interpersonal situations with clear rules, so counseling – free on many college campuses – is a great place to practice talking to a stranger within a fixed structure). It took me a while to find my people – other people I would describe as “doofy” and “interested in ideas”, a goodly percentage of which also have other brain-quirks that remind me a lot of myself – but once I did I was very, very happy, and I’ve kept those friends after I graduated and moved into the working world. (Also, hanging out with other people with similar brains is brilliant, we hang out in quiet places that don’t cause overload like college parties did and do things we all find interesting like play games or make things instead of doing open-ended socializing, which I’m still indifferent towards.)
Again, I am saying this as someone with no formal diagnosis, but I did find that in my mid-twenties my ability to do things like make eye contact (sometimes) and interpret nonverbal signals (sometimes) made major, major leaps, like different parts of my brain suddenly decided to kick in. It was honestly really stressful and I actually went back into therapy to cope with things like “I can tell a stranger’s feelings from their vocal tones, HELP WHAT DO I DO”. (God, I love therapy. Have I mentioned that I love therapy?). So some of those skills did show up eventually, though I don’t think they work exactly the same as neurotypical peoples’, and some of the skills that might never show up I have been working around for so long that I honestly don’t think about it.
Finally: someone who hangs out on a different part of the autism spectrum than I do once said “You know, some people with ASD act like Sheldon Cooper, but then some of them act like Luna Lovegood”. And this is for some reason the advice I have found the most encouraging – that I don’t have to be a brilliant scientist answer-machine just because I have a quirky brain, I can also just kind of wander through the world being weird in my own damn way and being happy about it.
I did find that in my mid-twenties my ability to do things like make eye contact (sometimes) and interpret nonverbal signals (sometimes) made major, major leaps, like different parts of my brain suddenly decided to kick in.
Me too! I’m 30, and just this past year or so I’ve been understanding conversational subtext and reading body language. Not all the time, and not everything, but it’s a new thing that’s happening (maybe I’ve had enough time for my brain to build up some sort of critical mass in its pattern recognition libraries or something) and it is SO WEIRD. Useful sometimes! But weird.
As an NT-person-with-various-psychiatric-diagnoses, once I got past the massive uncomfortableness with DIAGNOSIS LABEL, it was almost comforting sometimes — “You mean I’m not just lazy, thoughtless, and hopelessly disorganized? There are reasons for all these things and ways to fix/work around them?” So, there’s that.
Also, I recommend really investigating your housing options. Some schools will have a dorm that’s a “quiet zone”, or substance-free or fragrance-free housing.
This is a very good tip. Quiet-zones and substance-free housing are a very good choice if you have a hard time concentrating in a loud area.
Some dorms are paper thin and you can hear everything going on. I specifically can due to my hypersensitivity. I can hear and smell everything going on within a certain radius.
I have to sleep with a fan on and noise cancelling headphones at times!
This is an excellent point. My only experience is with K-12 schools, which are required to make accommodations for students with Asperger’s. I don’t know about college situations, but I can’t imagine the laws are all that different.
At the very least, this won’t be the first time the LW’s university has admitted a student with this diagnosis. Definitely call the university and ask what options/accommodations they offer for students in your situation.
Oh hey, this is excellent advice. Also, look into having a single instead of a roommate, if this is an option for you. I know it can be isolating, but I also know it can be great to have a place to retreat that is Yours. And I also went to the library a lot just to hang, for the quiet thing.
Yes! I came to say this! A single room was a GODSEND for me in college. I am an introvert, have social anxiety, and get migraines that are triggered by light/heat/sound/smells. Not being able to control who or what was in my personal space would have been terrible for me. I don’t think I am being dramatic when I say I don’t know if I would have finished if I had to have a roommate.
I had roommates all four years of college. I spent a lot of time in the library. Here is a suggestion: if you have movable furniture and a roommate, make yourself an alcove that is almost like your own room. I did it by sticking my desk in a corner with my bookcase in front of it. I could see out the window from my desk, and even when my roommate was in the room it *felt* like I was alone, if she was doing something quiet like reading or listening to music on her headphones or writing a paper or something. It made a huge difference.
The word ‘allistic’ most likely fits better than ‘neurotypical’, there. The former means ‘not autistic’; the latter implies, well, typicality, which probably isn’t the case if your psych diagnoses are relevant here.
(Not intending to jump on you or anything; it’s still an obscure term at this point and I’d like to see it get a bit more traction.)
That is most excellent. Thanks! I wasn’t actually sure what to call myself — “neurotypical in some ways but kinda really not in others so I’m not sure what all that means” was too long.
I have (I believe; I’m still foggy on it) Asperger’s syndrome. I remember when I was younger, I was “mentoring” someone else with Asperger’s, and I remember saying, “Do you sometimes feel like you have to translate everything you say to be understood?” and he looked back at me and said, “Yes! Absolutely!” It’s a proud memory of mine, and perhaps you feel that way too. I’m going to do a little speculating here; feel free to ignore me if I’m off the mark, as I could very well be. Imagine meeting someone with whom you feel you’re speaking your native language. If that sounds like an awesome experience, then I would suggest revisiting your claim that you’re not emotionally mature. Your emotions just look different.
For the longest time, being a loner and not having friends was just “part of who I was”. Your mileage may vary, but when I went to college, I made more friends in the first four days than I had in the four years of high school. I remember the first time where we had to pull tables together at lunch to seat everyone, and I commented that such a thing would have been unheard of for me in high school. Everyone around the table agreed. Also, tellingly, the friends from college were better friends.
You didn’t mention romantic relationships, but they come up a lot especially for those with social anxiety, so I’ll bring that up too. I’m a heterosexual male. I’ve always been absolutely terrified of women, and yet, as a sophomore in college I met someone that I clicked really well with, and we fell for each other hard. It was a wonderful relationship that lasted for years, Today, while I’m still nervous around women (who isn’t nervous about their preferred gender?), I have, with practice, learned to go to parties and meet and converse with interesting women. Some of them have become partners.
The thing I hope you’re taking away from this is that for me, “It Got Better” ™. You have a lot of reason to hope it’s going to work out. My advice (ok, seriously cliched, my apologies) is to figure out who and what you want most deeply to be, and then be that person. In my experience, that’s the best way to attract cool people. Naturally, college is a wonderful place to do that.
The response from the Aspie folks is cool and far more useful than anything I can say, but since you’ll statistically be meeting more neurotypicals than not most places you go, I’ll weigh in. Speaking as one who had a lot of Aspie friends in college (wow, have I found a situation where the construction “I have [some minority] friends” is useful?) and spread throughout my social circle, here’s a bit of about the neurotypical people who will, by sheer force of numbers, mostly be setting the tone for the environment. Remember, college is a time and place where you have complete freedom to choose your social circle and have your pick of just about every option. You get to try things out on a whole different level, too. The closed off aspects of high school are pretty much done for. I can’t say that everyone you’ll go to college with is non-judgemental, but you get to pick people who are.
Basically, if someone doesn’t want to be your friend because they find out about a diagnosis, forget them. Find someone else. If you’re feeling fairly comfortable with people, you can always try just throwing it out there early on. “I have Asperger’s. I have so-and-such issues in whatever circumstances, and consideration is appreciated.” Communication is super helpful in general, and I frankly wish everyone was as straightforward as some of my Aspie friends. (Example: Barring special occasions like birthdays or farewells, I do not like hugs. Hugs make me imitate a hedgehog. My aspie friends are much more likely than my neurotypical friends to ask if I want a hug and I don’t have to grow angry spines at someone who was trying to be pleasant.) People who usually can read faces and social situations and such seldom doubt themselves and are more likely to roll right along assuming they’re right. So I tend to react to finding out a friend or acquaintance has Asperger’s the way I would to any other interesting personality trait.
And if you have any interests in the area, the sci-fi club or closest equivalent would probably be a good place to go and socialize where the stigma will be minimal. I don’t know if a love of spaceships begets mild oddness or the other way around, but there is a high incidence of Asperger’s and social awkwardness in geekland. It’s a good general springboard, and if you’re ever lacking for conversation topics, you can just bring up Dr. Who and everyone will have an opinion.
LW, I was diagnosed with Asperger’s after 3 years in college. It came as a relief and a burden; it finally explained why it was so hard for me to make friends, why I couldn’t focus in class (and thus watched my grades slip) because there were just too many people around me, and why people thought I was “odd” when I started talking about my passions and interests. But most importantly, I now knew that I could learn to adapt and fight back. So I did; and though I could’t go back and fix 3 years worth of bad grades, at least I can look forward to working hard and doing better in graduate school. But most importantly to me, I learned how to “talk” to people properly and have made wonderful friends.
I am eternally grateful I discovered I was an Aspie on my college campus; the support network and counseling services were a godsend. I wouldn’t have had access to these things if I had been in my disgusting hometown (closest counselor/therapist service is 2 hours away). Also, even though my parents are supportive of me in most areas of my life, they refuse to accept I have Asperger’s. I’m not mad at them for this, but I do get frustrated with them. However, I know they don’t want to accept this because they’re afraid of having their only two children be on the autism spectrum (my younger brother is moderately-to-mildly autistic). They’re afraid of the hardships and stigma we may encounter in life; since I spent a good 20 years barely passing as a “normal” person, they want to keep on believing that I really am “normal”. (NOTE: I believe normalcy is also a spectrum and varies depending on your measuring stick. Therefore, there is no such thing as a set “normal”.)
All of the advice given to you here is wonderful; reach out to others, even if it may be the most terrifying thing ever (I did and I somehow landed myself with a wonderful boyfriend who’s caring, considerate, and willing to help me improve my social skills further). Not everyone will be a friend, but not everyone will be an enemy or a bully either. Sometimes those casual acquaintances could be the best social interaction ever, because you don’t feel obligated to have to maintain close contact with them but you learn so much more about other people and their interests that way. And definitely see if your school has an excellent counseling service; it’s nice to have someone who’s not related to your life directly to help you out. Feel free to switch counselors until you find the one that is right for you; not all counselors will be perfect for you, but one might be.
Good luck LW; I believe in you ^_^
Female aspie, 22. I was in a similar situation, LW, where I got my diagnosis on the way to college – but for me it wasn’t because I was actually diagnosed then. I was diagnosed at age 5, but my parents decided not to burden me with a diagnosis as I was growing up and creating my identity, which I now think was one of the best things they could have done for me. That decision meant that I had some hard times re: bullies in high school (and middle school, and elementary school), but it also meant that I never had to disclose my difference to anyone, that I grew up with a worldview that didn’t cast me as diseased or broken. Like you, I’ve never been the kind of aspie people can peg from stereotypes alone. Though I still have problems meeting new people I had plenty of friends, deep relationships, and was active in social groups. I was even captain of the high school competitive speech team for 3 years — far from the stereotypical shy, uncommunicative autist! I knew I was different, and I embraced that difference. I loved (and still love) my brain.
When I got to be about 18, things started to click for me. I looked back on those kindergarten trips to the psychologist and asked my parents if they had thought I had autism. (I mean, those tests started because my kindergarten teacher was concerned that a) I never talked in class, b) didn’t seem to have friends, c) spent all my time wandering around the classroom by myself with a cat-shaped eraser not talking to anyone, and d) punched her in the face on the second day of class when she tried to talk to me in front of the whole class. In retrospect it’s pretty obvious.) They admitted that the doctors had diagnosed me with Asperger’s but that they had asked not to have that officially noted, so that I wouldn’t have a life sentence of disability.
It sounds to me like you’ve gotten a little stuck thinking about it this way — now you have this diagnosis and it’s like it confirms that The Problem Is You. All those people who misunderstood you and were cruel to you because of it — nope, they’re normal, you really ARE weird! And you’re afraid not only that this confirms the bad guys are right, but that you’re wrong, that you must be unable to connect with people or understand love or art, and are therefore doomed to life as a calculator. Everyone on the autism spectrum will tell you that those stereotypes are horribly wrong (I’d actually argue the opposite is true, that autists tend to OVERempathize with people, far from lacking empathy, but that’s a whole other subject), but I can see how you could get sucked into thinking that way. Most of us have done it at one time or another! I’m sure a chorus of AS folks will show up here to reassure you that those stereotypes are wrong and you’re not broken. Me too: THOSE STEREOTYPES ARE WRONG AND YOU’RE NOT BROKEN.
I want to present an alternative way of thinking about your diagnosis, which is my standard advice now to people dealing with a new mental health diagnosis or any other identity issue. My brother was recently diagnosed with ADD and he went through the same turmoil! (though to a lesser degree.) Here’s what I told him: Don’t think of your diagnosis as a magic word that explains your entire life. When I was 18, I thought that those magic words existed, mainly because I thought that once I figured out the perfect word to describe my sexuality and came out of the closet it would make everything straightforward. I expected that “Asperger’s” and “bisexual” (the word I chose at 19, not necessarily the one I prefer now) would be enough to summarize all the problems I’d face and all the feelings I had. Part of that was a geek social fallacy, part of it was Asperger’s let’s-observe-catalogue-and-define-all-the-things-ism, but most of it was just being 18. After a couple years of trying to do that I realized that magic words don’t work. They can sometimes help you talk to people about yourself, because they summarize a lot of concepts concisely, but they don’t help you THINK about yourself. It makes more sense to think of those words — including your diagnosis — as a tool.
If “Asperger’s” is a tool, you can use it when you want to and leave it in the toolbox the rest of the time. This doesn’t just mean that you can choose when to disclose and not to disclose your diagnosis, but also gives you latitude to only think of yourself as AS when it’s useful to you. That’s what tools are for! When you’re in class and you feel super-uncomfortable in this mandatory small discussion group of people you barely know, the “Asperger’s” magic word is a very useful tool. Instead of just feeling sick and stressed and curling up into a mental ball through the experience, you can say to yourself, “You know what, this is not my fault. Jerkbrain, stop blaming me. I don’t feel this way because I’m useless or antisocial, I feel this way because I have Asperger’s. It’s just my brain thing, it’s not ME.” And then you let yourself take a breath. If that isn’t enough to defuse the tension, you can use the magic word to get yourself some accommodations in that class, so you don’t have to be in situations that make your body do all those not-your-fault things! If you’re comfortable with disclosing, you can even use it to explain yourself upon meeting a group of people, so they’ll give you a break for any slight awkwardness***.
But when you are good at something it’s not because of Asperger’s. And when you fail at something it’s not because of Asperger’s. And when people are mean to you it’s not because of Asperger’s, it’s because of them. Indeed, none of the thoughts you think or the things you do are because of Asperger’s — they’re because of you. You are you. Asperger’s is not you.
College is different from high school. You will meet a lot of great people and a lot of awful people, but because of the way college is set up (you pick your classes, living situation, schedule, etc.) you have a lot more power to choose who you see every day. You will end up building a collection of great people and rarely encountering the bad ones. You will date if you want to, and make real friends. You will read a lot of great books. That all reads like empty non-advice, so let me try to come up with some actual advice before I let you go.
Yes, the beginning of college is Stress Times for autists because it’s a giant, constant social smorgasbord. My best advice for dealing with this is to carve out times to spend in your room alone. If you know you’re going to have to eat dinner with people, don’t commit to going on the tour of the science building that afternoon. Figure out how many big social things you can do in relative comfort per day, and spend the rest of the time recovering from those.
If that orientation stuff isn’t turning up BFF candidates, don’t panic. I had much more success meeting my people in clubs after school got underway. I started my freshman year in just one group, a chamber choir with about 30 members. Because we had prescribed meetings and a constant membership, I got to know those people really well over my freshman fall even when the traditional “walk around with a bunch of freshmen + ??? = friends!” formula wasn’t working. Join one or two groups re: your interests, and you’ll have a failsafe support structure. (I met 6(!) Lifetime Friends through just that first term of the choir, btw, plus many other Good Acquaintances.)
Clubs are also a good strategy to use throughout your college career. Even if your attempts at finding your people aren’t super-successful that first semester, you can continue to use clubs to introduce yourself to manageable groups of similarly-interested folks. Your first semester intramural floor hockey wasn’t so great? Try the humor magazine next semester!
Stay in contact with friends from HS and family if you have people from those things that you trust and like. This will reassure you that you are not a social failure, that you are in fact capable of having relationships and talking to humans. If it helps to literally think that after you hang up your skype call, do it. “See, jerkbrain! I am totally capable of having relationships and talking to humans!”
Seek therapy if you feel depressed or overwhelmed. It should be free or almost free on campus. There are also autism support groups online (and in person), if you need to vent and/or another outlet to reassure yourself that you are capable of having conversations.
And yes, in college as everywhere the negative stereotypes about autism abide. My senior year of college ALL THE SORORITIES decided it was time to have multiple events for Autism Speaks (yuck), so my email inbox was full of stuff that made me feel gross. But as you become more comfortable with yourself, not just with your magic words, you’ll be able to talk about AS with your friends. They’ll know what it has meant to you and what you are like, so they’ll help to make you feel safe.
1) Asperger’s is actually kind of great
2) some people are ableist assholes but that’s their problem, not yours
3) in fact, in college you will be able to avoid those people better than you did in high school, because it’s a bigger and differently shaped space so you’ll have more room to pick your friends
4) magic words are not definitions, just tools to use when it will make your life easier
5) good luck! You’ll do great.
*** USE WITH CARE. I wasn’t comfortable doing this for a long time, because I thought it would make my situation worse by giving people a set of stereotypes to latch onto right when they first met me. Indeed I think this can result from this kind of disclosure in the wrong setting or with the wrong implementation. If you don’t feel comfortable with that it’s totally okay! I don’t do it all the time because often it’s not necessary, but once in awhile if I am really stressed about an interaction I feel like a low-key disclosure takes pressure off me.
It is your second or third time hanging out with a person or group of people and for whatever reason you’re having social anxiety. Your previous interactions have gone well and you think they like you pretty well.
During an appropriate break in the conversation (whatever feels right, i.e. whenever you feel stressed enough to want to disclose in the first place), you say:
“Hey, guys, just so you know, I have Asperger’s, so don’t worry that I don’t like you or something if I get a little shy or awkward tonight. I like you guys a lot! Anyway, [change the subject back to the previous conversation/purpose of the gathering].”
Can you talk some more about the over empathizing? It’s ringing a bell for me and I’d love more information
It’s just personal — I’ve always felt like my (very textbook Asperger’s) symptoms all come from a place of too much empathy rather than the “they just don’t understand how to relate to people!” handwaving that some bad therapists will do. Like, I have social anxiety because I’m overidentifying with the people I’m anxious about, and therefore really invested in what they’re thinking. I get upset under intense, sudden social expectations (that kindergarten teacher putting me on the spot) because I’m similarly too invested in what the people watching me think/feel about me. Too much social stuff all in one day wears me out because my brain can’t stop identifying with people and just tune some of them out. And making eye contact feels too much like an invitation for them to look into me and understand me like I understand them. There’s a lot of projecting involved. The eye contact thing especially is just Too Much Emotional Identification! I’m always wary of putting too much emphasis on this hypothesis because a) I’m not aware of any science that’s explored this idea (if there is some out there, let me know) and mostly b) the autism spectrum is super-complicated and I know that because I’m relatively high functioning my experience of these symptoms is probably different than other people, and especially don’t want to ‘splain to the “less functional” people what their problem is. But if this is a useful way to frame it for you, as it is for me, feel free to adopt it!
The over-identification & hyper-awareness of what everyone is thinking explanation just made many, many of the letters in my inbox click into place for me in a new way, so thanks.
Yes, THIS. Also:
forwarding to my psych grad student friend, like, IMMEDIATELY
Wow. I feel like you just made me a ten-fold better teacher for some of my students. Thanks!
LJ, so much yes.
Also, the eye contact thing. THE EYE CONTACT THING. Oh my god. This is so, so, so, so, so, so, so, useful.
Thanks, so much, commenters. I can’t even tell you how much I appreciate having read this today.
God, I wish.
I was on the atypical antipsychotics for years (super-low dose; I still would be if it weren’t for EPS). On any of the atypicals — or the third-generation variety I was on later — I could make persistent eye contact! I could read people (to some extent)! I didn’t ramble much! I could tell when people wanted to stop talking!
And then I went off of them. Unavoidable, really — if I didn’t, I’d run the risk of permanent neurological damage. And now I don’t.
Eye contact isn’t about reading people. It’s about way too much stimulus. I can watch people while they speak. I can’t look at them while I talk anymore. It’s frustrating. I sure as hell can’t tell what they want.
I empathize with people when I realize what they want. I can’t empathize immediately, however. I can’t read them. I wish I could.
This may be what you experience, but it’s definitely not a generalized theory of autism. (And I am *very* high functioning.)
This is absolutely perfect. Thank you for describing what I’ve struggled to articulate for more than a decade.
I don’t feel less. I simply feel *too much* at one time.
Sometimes I feel as though people think I’m a robotic-monster when internally I’m an emotional wreck.
Thank you for saying this and finding the words I’ve never found.
This rings a bell with me too – I’m lacking in cognitive empathy, so I can’t always tell what people are feeling, but I have plenty of affective empathy. Especially because I’m aware of my poor cognitive empathy, so I’m habitually mentally putting myself in other people’s shoes.
And oh boy the caring what people think. I’m better now about being myself and trusting My People to like that, but I used to really, desperately care what people thought and try to be how I thought they wanted me to be. Only I was terrible at figuring out what that was, so it had the predictable result of buckets of social anxiety.
Eyes for me are just intensely uncomfortable, and I’ve never been able to articulate why. Too much information coming in that I can’t interpret.
Do I ever hear you! I definitely have some sort of hyper-empathy going on – I sometimes call this emotional mirroring because what happens is that I start to experience the emotions I’m attributing to the person in the situation. An example is how I cannot, cannot be around people who are yelling at each other, because it feels as if they’re both yelling at me and I want to curl up into a ball and hide forever. If I’m around someone who is upset, I get upset too. (This also means that I am flat-out terrible at comforting people, because I end up needing comfort myself instead – chalk another one up for affective empathy =/= cognitive empathy…) I can’t look at people or pictures of people in pain at all, period. I note that this doesn’t actually mean I’m better at accurately reading emotions, because I mirror the ones I *think* are there. Forex, I used to live with a flatmate from Cyprus, and when she was on the phone with her parents she’d use vocal tones that my mind interpreted as upset and shouting. She wasn’t, it was a culture clash (Mediterranean norms for upset speech vs German), but I still had to cover my ears or leave the room all the same.
The mirroring thing also happens to me with opinions, which sucks like a hoover the size of Mt. Everest; I’m pretty much incapable of debating a lot of things in RL because the other person’s beliefs will temporarily overwrite my own, and core beliefs/things I feel very strongly about are just as vulnerable if not even moreso than minor issues. Trying to set boundaries with this shit going on is also fun!
Meanwhile! I meet allistic people who are not willing to even try to put themselves in my shoes, at all, in the slightest. Who are not willing to move an inch to meet me when it comes to body language stuff. Who will, oh, happily ignore anything I tell them about my sensory sensitivities and wheedle, nag, drag, etc. me into situations that are too much for me, watch me break down in tears and end up needing to be helped home because I’m verging on overload, and then a few months later do the same thing again. But apparently I’m the one who lacks empathy!
That makes all kinds of sense, thanks!
I don’t have Asperger’s, but I do have severe social anxiety/depression/memory issues/facial recognition issues, and I guess you’re suffering from anxiety about this shift, so we have some commonalities? I wanted to speak to another point, though, that you feel really isolated by your diagnosis, and say that even if you don’t encounter that many (out) Aspies, there are definitely other NTs who’ll understand and probably even totally identify with parts of your experience, enough to form fast friendships.
LW, I don’t have a single neurotypical friend at this point in life, and only one NT and able friend I can think of. Our group’s big Bond(TM) seems to be that we have varied, and common, interests. There’s stuff we geek out about together; I can say things like “So who else thinks that Game of Thrones might as well be called A Song of Richards and Henries?” and everyone goes “ooooooh fair enough”, and we watch anime and read fantasy and share kink tips. We’re also varied, in that one of us does lovely artwork and gives makeovers as a hobby, and another rescues and raises cats, and I’m the colonial history freak who translates Tamil poetry, and my wife likes to tool around making websites and is a bloody encyclopedia of old movies, etc etc.
College-age/older interactions don’t require the same lockstep of interests-likes-wants-habits that high-school-age kids tend to demand from their groups. You won’t face as many stereotypes and pointing fingers, simply because you’ll have a better chance of meeting other out non-NTs with their own oddball interests and quirks. Yes, we’re a relatively small percentage of the population (though not THAT small when you really think about it), but you’ll meet lots of people who know what it’s like to struggle with mental illnesses and who also don’t really care if you have one or how severe it is, as long as you’re not being a conscious asshole and hiding behind it. Other non-NTs, or people who’ve grown up around non-NTs, will also have a much better chance of “getting” your needs and boundaries and blind spots and talents.
Also, around the age when most people go to college is also when most people get officially diagnosed with various mental illnesses, and come out openly about it. I’d really compare it to how colleges seem to have TONS of LGBTQ people compared to high school: this is when people are figuring things out, this is when they’re coming up against realities and accepting truths and relaxing after the pressure of conformity high school demands. You’ll find yourself in much larger company than you think, simply because more people won’t be trying desperately to keep from being singled out as Different, any more.
You sound like a really smart, together and self-aware (this is not mutually exclusive with depressed and worried!) person, LW. You’re going to have an awesome time.
”Hopefully with some time you can see the diagnosis as a helpful way to describe some of the things you’ve been struggling with all along. You’re not broken! There’s a reason you’ve been feeling the way you do.”
I won’t try to sum it up better than this. It can be difficult not to feel limited by A.S. in my experience, but it helps to see it as a series of character traits – some of which are problematic, but can still be managed. It’s crucially important not to view it as a summing-up of your personality. You’re still an individual with your own personality and little idiosyncratic traits, and Asperger’s just happens to factor into that.
Sorry this is all a bit garbled and doesn’t offer much in the way of practical advice. Individual problems tend to vary amongst individuals, but hopefully you’ll be able to pinpoint the particular areas in which you might need practical help and seek it out.
A diagnosis is useful in that it can explain some of the particular areas you might be struggling with – or just some particular characteristics that don’t give you much trouble – but it doesn’t inherently change anything about your identity. Don’t lose touch with yourself as a person. And good luck x
Oh LW. I’m sorry this hit you that way. And I hope this comment manages to make some kind of sense or be some kind of useful. Rule of thumb is this: if what I say makes sense and is useful, yay! If not, feel free to ignore me. It’s all about what helps you.
As an Aspie person, I can tell you, very honestly, that we are just fine at making meaningful connections with people. We really are. If anything prevents us from doing that, it isn’t ASD, it’s things like anxiety and depression, and nobody giving anyone useful roadmaps about how to talk across the neurology divide. It’s a training-flaw, not a personality-flaw, and training can be changed, both for us and for NTs (and other autistics, because gods know we don’t all magically understand each other either) we interact with. All it means is that sometimes, it takes more care, more effort and more patience, both with others and SO MUCH with ourselves.
We love (romantically and not) and are loved (romantically and not). The diagnosis tag isn’t a declaration of doom telling you that you’ll be foreveralone and locked in your own head. It just means that some of the difficulties you’ve had (and sounds like HS was the den of evil for you that it is for a lot of us, ugh) and the differences you have happen to cluster around into a pattern that we have a name for.
One of the nice things about having a name for it is that we have a vague idea of how some of it works, and also you can use the rubber-stamped diagnosis to help you get accommodations and help you might need.
The diagnosis hasn’t changed you. You are still you. Everything that was true about you and who you are before the “Autism Spectrum Disorder” stamp on your chart is still true now, and nothing that wasn’t true then is true now.
For me, figuring out WHY I was the way I was came as an unbelievable relief: I wasn’t “just” hopelessly weird and broken! There was a REASON for the things I did! And better yet, there was stuff I could do to mitigate the biggest difficulties. (Mine were overload meltdowns: once I hit overstimulation, I invariably turned into a crying five year old with about as much brain as my cat, which is quite smart for a cat and really uselessly stupid for a human. You might have something different, or you might be managing just fine, in which case good on you.)
Stereotypes do suck, and people do have them. The best way I’ve found dealing with them is to ignore them until I have to pay attention, and then to address them.
University, for me as an Aspie-girl, was so fucking much better than high-school. I went to classes with people who wanted to be there! I did what I wanted with my free time! I took the classes I wanted to take, or at least were contributing to the degree I wanted to take! And most importantly, suddenly the pool of people available to me was so much bigger than the high-school pool, and life didn’t revolve around my catchment area anymore.
I met people from different backgrounds, with different experiences, who neither knew nor cared about anything I’d done when I was 14 (no matter how embarrassing). And so on, and so forth.
It’s harder for some people than for others; another Aspie-girl I know, a friend of the family, didn’t have such a great time at college because she discovered that, away from her family, she didn’t have any self-discipline skills, which made stuff like studying hard and, well, erratic. And some people have a really hard time, not gonna lie. But the big thing about it is that it’s kind of a clean slate.
You mention being worried about being behind your age-peers maturity-wise, LW. I think the best advice I can give you (the one I wish someone had given me), is that worrying about where you “should” be social/emotional maturity-wise never helps. What helps is figuring out where you are, what makes YOUR world better, what makes it worse, what makes it work and what YOU need. Not what “19-year-olds” need (or whatever age you are): there may be a standard-model person, but I haven’t met one yet – what YOU need, like, want, and don’t want. One of the things I’ve noticed both in myself and in Aspie-friends is that we’re often all over the map: in some things, we’re WAY beyond our age-peers, and in some things, we’re weirdly behind . . . . and in a lot of things, we’re not even on the same map. We have to make our own map, which has upsides, but also downsides.
Post-secondary is a big change. And changes are scary. It can be a GREAT big change, though. (Not that that takes away the scary. One of the traits I share with my more severely autistic little sister is that even change we WANT makes our heads go squirrelly, because it’s change. BRAINS. How do they work.)
In terms of pragmatic advice: if it’s at all available on your campus (and I strongly suspect it is), find where the counselling people are, and what you need to do for academic or personal concessions. Universities usually have systems in place to at least try to help students with neuroatypicalities and physical atypicalities succeed: use them! They can be a godsend, and the earlier you find them and make them work for you, the more help they are likely to be, even if it’s just to show up at the counsellor’s office and go EVERYTHING IS WRONG HELP ME FIX IT. Often, they can! and will.
I also totally agree with the Captain: a therapist who can help you with this is a really good idea. ASD often has stuff like severe anxiety and depression and other issues comorbid, and they can get all tangled up and turn into a MESS, and wanting to hurt yourself is never a good sign. I’d also add that some therapists can be, shall I put it kindly, a little ignorant about non-child ASD stuff (ie: when you are no longer five and in the corner screaming, but are in fact a mostly-functional adult with your own opinions about what your life should look like), so a) find one with experience in the area if you can and b) if something about the therapist you find makes you feel uncomfortable or not listened to or like zie’s focused more on making you “normal” than making you “functional” (because we don’t need to be NT, we just need to be able to handle life, thanks everso), don’t hesitate to find someone else.
. . . I feel like this comment is more confused and incoherent than I want it to be, but I want to leave it anyway, because I don’t know that I’ll have any opportunity later, and hearing that the diagnosis hurt you that much made me feel a lot for you, LW. Like I said at the beginning: anything that I’ve said here that’s helpful, please make use of; anything that feels wrong, please ignore.
Look after yourself, and good luck.
LW, @AutistLiam on Twitter wanted to make sure you had this link about suicidal depression in young people with autism.
LW, looking at all these great comments I’m not sure I have a ton to add…but as an Autistic person, I will say that one thing I wish I’d learned earlier in life was how profoundly helpful it is to get in the habit of taking care of yourself. Growing up without a diagnosis, I internalized a lot of gross, super ableist messages, the most extreme of which was probably, “If something feels shitty but other people appear not to have any trouble doing it, then you need to suck it up and do it too.” Unsurprisingly, this led to plenty of uncomfortable experiences and some pretty intense meltdowns. Life improved significantly when I started to figure out (with the help of an awesome therapist) how to cut myself some slack, to rest when I really needed to, to take time alone when social interaction was too much to handle. This is still tricky sometimes, but it makes a world of difference and is definitely something I wish I’d known before I went to college. One thing I do that may or may not help you is periodically take stock of my feelings (anxiety level, physical [dis]comfort, etc) and respond accordingly, while trying to avoid the judgmental sorts of evaluations (i.e., “But you shouldn’t feel that way!”) that come really naturally to me. Cheesy though it may be, I even started a kind of “feelings journal” to keep track of this stuff, and so far it’s been pretty helpful.
At any rate, what I’m trying to say is take care of yourself – it sounds so simple, but it can take some practice.
This is my favorite thread ever. “If something feels shitty but other people appear not to have any trouble doing it, then you need to suck it up and do it too.” That is… that is 90% of my life. Thanks for your post.
Ditto. I have had so many conversations with my therapist about this exact thing, and really accepting and acknowledging that just because other people can do it, doesn’t mean I have to be able to (and if I am not able to do it [or at least not without doing damage to my own health and well-being], it doesn’t mean I suck) is still probably the number one thing I’m working on.
This is great advice. I have social anxiety, and my life got a lot easier when I realized that it was OKAY for me to say to myself, “I want to go to [thing] tonight, but I am feeling anxious and upset about it, so I will just stay home.” It wasn’t a failure any more. It was a choice! I mean, obviously the corollary to this was that sometimes I said, instead, “I want to go to [thing] tonight, and I am feeling anxious, but that is just the Anxiety talking and I will go anyway.” (And then if I went and I was feeling so anxious it wasn’t worth it, I would LEAVE. And if I went and things were okay and I made small talk and had fun, it was a VICTORY.) But I didn’t need to push myself just because Other People went to [thing]s all the time and it wasn’t a big deal for them. It is a big deal to me, and that’s okay.
I am breaking the rules a little bit here, because I do not have Autism. But I’m also not going to try to tell you about Autism- I’m going to tell you about my experience getting a Diagnosis-that-sucked.
When I was 20 and in my 2nd year of University, I got diagnosed with a chronic illness. The illness was big and bad and hard to treat and screwed me up in serious ways. So when I first got the diagnosis, I was crushed. I felt like my life was over now that I had this horrible thing. BUT- I had actually been sick for years. It wasn’t like the diagnoses gave me the illness. i have been very sick and scared and looking for answers for years. It had also been screwing up my life for years. So while the answer was temporarily scary, I was able to purposefully re-route my thinking. The diagnosis didn’t change ME- it just changed how I approached getting help. I could have focused treatments and strategies designed specifically for my illness. It meant I could stop blaming myself for a lot of stuff going wrong in my life- I didn’t have to hate myself for not trying hard enough, or not doing certain things right.
I would encourage you to try to think about this, even just for 10 minutes. You were just recently diagnosed, but from your letter it sounds like you were struggling for years. This diagnosis means that you now know WHY you were struggling- and you can find therapies tailored specifically to people with similar challenges to yours. Hopefully you can find therapists who will work WITH you, your brain, and your specific challenges, instead of trying to stick you in the NT pigeon hole.
Believe me, I KNOW just how scary a diagnosis can be. But PLEASE- don’t let yourself believe the diagnosis defines you. The whole purpose of the diagnostic process is to learn how to help people better. You are still you! You are the same person as before the diagnosis! Only now you have a chance to find better tools!
Sending you hope and positive thoughts
I don’t have time to read all the comments, and I want to make sure this gets said, so sorry if it’s a repeat:
First: The diagnosis doesn’t change nearly as much as it feels like it does. You’re still the same person you were a month ago; the difference is that now you have a word for some aspects of that. There are some advantages to that – accommodations and assistance that you can get, the autistic community that you now know you’ll want to look into – and not actually that many downsides from the diagnosis.
One thing to keep firmly in mind is that you aren’t obligated to tell anyone about the diagnosis – it’s hard for people to stereotype you if they don’t know that you’re in a category that they’d want to stereotype! (Of course you’ll still have to deal with any repercussions from the “social awkwardness”, but it’s not like the diagnosis makes that *worse*.) Not that I’m suggesting that you don’t tell anyone at all – you don’t have to tell anyone, but if you feel like you can’t tell a particular person even though they’re theoretically a close friend, that’s generally a sign that something’s wrong in the relationship – just that *you* get to decide what you want to do about the issue.
Second: I put “social awkwardness” in scare quotes back there for a reason: The more time I spend in overwhelmingly-autistic social circles, the clearer it is that it’s not actually true that autistics are intrinsically bad at social stuff. We’re just different, in a way that makes it hard for us to fit into allistic (non-autistic but not necessarily otherwise normal) social spaces but that also makes it hard for allistics to fit into autistic social spaces – a neurotypical person trying to navigate an autistic group’s social norms will generally seem just as awkward and out of sync as an autistic person trying to navigate in the rest of the world, whereas a new autistic person trying to navigate the same group will most likely do just fine, same as a neurotypical person in an allistic group. That isn’t very useful in and of itself when we’re outnumbered nearly 100 to 1 in most of the world, but there’s an important implication to keep in mind: You aren’t broken. Your social instincts are just tuned for a situation that doesn’t come up very often.
Second: I put “social awkwardness” in scare quotes back there for a reason: The more time I spend in overwhelmingly-autistic social circles, the clearer it is that it’s not actually true that autistics are intrinsically bad at social stuff.
Thanks! I was going to bring this up if no one else did. (I once spent two weeks in a group with seven people who I read as allistic and one guy who was probably on the spectrum, and found myself in the strange role of translating for him: he spoke in a very detailed, sometimes non-chronological style with lots of digressions that I could understand pretty well – I have tendencies in that direction myself – but none of the others could cope with at all. Cue lots of “hey [spectrum guy], I guess you mean [the gist of what he said]?” on my part.)
I did the whole “work on my social skills!!!” thing, managed to shift myself from “very weird: unable to pass as NT in most circumstances” to “slightly weird: able to pass as NT in most circumstances” and I… really regret it. For one, I either seriously exacerbated or downright *gave myself* various mental health issues a la depression and anxiety this way. Because it meant I approached every single social interaction with the mindset that I was Wrong and the other person was Right and I had to figure out what they were doing and mimic it so I could be Right too. This worked very well in terms of figuring out body language, nonliteral language, and other things like that; it worked very badly in terms of keeping any sort of self-esteem at all. It’s also most likely worsened other issues of mine a la executive dysfunction, because a lot of the skills I picked up are now sufficiently unconscious that I can’t turn them off but still drain energy. Considering that I work on spoons, this is a very bad thing. I’d rather my brain spend precious spoons on things like “deciding what to eat for dinner” rather than “suppressing my natural body language in order to make other people in the grocery shop comfortable”. Alas, it no longer allows me to choose.
But, but but but, it’s *also* made me worse at communicating with other autistic people. I have a friend I’ve known since early high school who is most likely also on the spectrum, and this is really, really noticeable. After I did my learning social skills thing, I started to find her exhausting to be around when I never did before. I remember we used to have the most amazingly fun conversations about everything and anything: now I end up tangled in NT norms about interrupting people and subject changes I picked up along the way. With spectrum people I’ve met since then, I often find them really comfortable to be around in certain ways but difficult in others because they clash against allistic expectations I’ve internalised… often internalised in a haphazard way where I can’t properly follow them myself but still expect them. It’s something that makes me very sad.
tl;dr: Be careful about learning allistic social skills, body language, etc. Things like your mental health and being able to feed yourself are more important than not being The Weird One. Also, learning allistic social skills may be inversely correlated to knowing autistic social skills, so you may end up going from very socially incompetent in one to somewhat socially incompetent in both.
Yes yes yes, all of that.
Also, I’m pretty sure that you can undo at least some of that – or at least that some people in similar situations could. I did – I ended up very allistic-socialized as a young adult, and when it started getting obvious that that wasn’t sustainable, I started fiddling with various things to see if there was anything I could do about it, since as you say a lot of it was automatic. One thing in particular that I hit on that seemed useful was … I almost want to call it a kind of meditation, actually. I noticed that when I was out in public, I assumed that I might be talked to, and so I kept the word-generating parts of my brain running (and, as a side effect, producing a fair amount of word-based internal monologue, which doesn’t otherwise happen) so that if that happened I could respond promptly and smoothly. That was obviously much more spoon-drain than it was worth, so I started making a point of paying attention to that, and shutting it down when I noticed it happening. After a few months of that, it became automatic, and now it’s much easier (and safer, since I tend to lose coordination and balance skills when I’m lowspoony) for me to spend time in public like that. I did something similar with stimming, too – started out by intentionally doing stims in public when it was safe to do so, just to get the relevant brainbits used to the idea that that’s a thing that can happen. That one was a little less obviously useful – apparently I’m mostly not inclined to stim in the first place – but still seems to have helped in getting the regulating brainbit to stop spending spoons on making Super Extra Sure that it never ever happens.
I’m not sure what’d help with the social-interaction-expectation thing – maybe finding an autistic friend to talk to who will specifically call you on that stuff and talk it out when it happens? (I’m almost inclined to volunteer to give it a try, but I have rather a lot on my plate right now…)
Yes! While I do believe that engaging with allistic society is good for me, trying to mimic some NT behaviors has just plain not worked in addition to making me feel bad.
For example: I used to have horrible fights with my mom that would escalate because she’s notorious for nonliteral expectations. We’d be fighting about some minor thing and all of a sudden it had all this subtext. I understand emotional subtext pretty well, but when it comes to putting out those fires in relation to the actual text of the fight, I was completely at a loss. Nevertheless that was the only way to end the fight, so after hours of bad feeling I’d have to force myself into this big emotional catharsis. When I was trying to pass as NT at all times, I convinced myself that all this was my fault and that if I could only respond to subtext all of the time, even before fights started over ridiculous teenage stuff, we would never have any misunderstandings again. Didn’t work, but added a lot of stress and made me unhappy.
What ultimately fixed the problem for me was explaining to her, in great detail, what the problem actually was. Because in reality the problem was her expectation that I’d be able to behave on terms that feel unnatural to me. Since then, our relationship got much better, and I was able to shed a lot of the dread and frustration that had been part of me since I started trying to pass. Now I make it a point to make my NT and allistic friends understand that I’m just going to use my social norms with them and they will have to actually try to understand me just as I try to understand them. Probably that’s not a solution for everyone, esp. if you don’t want to disclose your diagnosis, but my natural response to brain!misunderstandings has always been Explain/Lecture At Great Length. That’s just one of my social brainquirks, I guess. Getting rid of the NT norms I’d internalized was a longer, harder process, but once the central people in my life gave me more leeway it became easier.
Basically there are some NT norms I can learn and practice without it hurting my self-esteem (eye contact, public speaking) and others I can’t (touching/personal space, body language, interrupting). Everyone’s got their own mix, but no matter what yours is it’s important to prioritize your own health and happiness.
Seconding the thing about not having to tell anyone. I often feel like I’m somehow required to tell people about having AS (and other things as well), especially if it comes up in a conversation, even if I don’t particularly want to disclose that information to whoever I’m talkning to.
Really, like any coming out-process, it should be your own decision. If you don’t feel comfortable telling people, you don’t have to.
I received my diagnosis five years ago. At that time I was in a bad state, suffering from depression and suicidal thoughts. The diagnosis of High Functioning Autism did not come as a relief, because I knew then that there was nothing I could do about it to change it and that I would face a lot of stigma’s because of it. I hated it. I felt like I failed in some way. I was in college and had a hard time connecting with my fellow students. My Psychology study didn’t go as planned, because of it. I just wanted to be ‘normal’.
Recently though I’ve begun to accept my autism as a part of who I am. I’ve started to see the positive aspects and even started a (Dutch) blog to inform people about autism. I’ve got friends and even found someone who wants to marry me! I do a lot of things people thought I would never do despite my autism. In my own way I’m proving the stigma wrong and that’s something I’m grateful for.
I’m not sure what changed my perspective of autism, I wish I could tell you.
I just hope you’ll be able to accept your Asperger’s and that college proves to be a great time for you!
Hey, LW! I got the same diagnosis about a month ago, except that I graduated from college six years ago. It sounds like you’re suffering from the same part of it that makes me suffer: the shame. And the terrible feeling of “what if being like this means I can’t do the things I want to do?” And most of all, not wanting to live in the Uncanny Valley and give all the normal monkeys the creeps because they can tell you’re not quite right, so they’ll reject you and you’ll be eaten by a tiger (no lie, that is exactly what I was angsting about to my psych this week.)
And it’s a real fear, a valid thing to be scared about. But you’re not alone. Everyone else the monkeys turn on is a potential ally. And the monkeys who know you and are used to you won’t be scared of your differences. It’s very tempting (at least for me) to hunker down in your room on your own with the computer and some snack foods and no loud noises or flashing lights or people making demands. But you do need other monkeys, because you really are a monkey too, even if sometimes they act like you’re not.
And don’t forget the internet. Obviously you haven’t, since you wrote in here, but internet socialisation can be an amazing training ground for people like us – real people, real conversations, but less stimulus and a more controlled environment. Lower bandwidth than face-to-face. Even lurking can be great for studying human interaction and figuring out how to do it without annoying people or making them mad.
All the virtual hugs for you, LW! When I worked out that I had Asperger’s, it was really more of a relief than anything else: it meant I finally had a name for all the weird stuff that had been going wrong in my life, the things I couldn’t understand, etc. etc. However, this happened before Asperger’s and the stereotypes thereof were widely known – I’m not sure I’d even heard of it before, really. Also, I had a similar awful experience when I worked out that certain dificulties I was experiencing were AS-related. I worked past that via getting involved in disability rights; a lot of the concepts floating around are *really, really helpful* for dealing with “I am different because of AS in X, Y and Z ways and that sucks”.
The advice you’ve been given so far is really good. Allow me to tack on a few things!
As other people have said, uni is a fantastic place for making friends and creating a social group that is right for you. For me, doing my Master’s was an amazing experience in this way: I made a group of friends who would play board games with me and crack geeky jokes and have awesome cultural cooking evenings together and and and… I remember the time we had an impromptu “who was most socially awkward in high school” competition at lunch with great joy! However, undergrad didn’t go quite so well. I will inform you of some of the things I wish I’d done different in hopes that yours will go better.
For one. There’s frequently a standard potential friend overture that people make. At my uni it was “let’s go to the pub together and get drunk.” This was what people asked you if they were interested in you as a friend, this was the big getting-to-know-each-other event most of the societies did, this was the way to signal platonic interest. And for me, this was not on, because a) I hated alcohol b) I hated getting intoxicated c) I had noise issues that made pubs a no go. So I’d turn them down. And I’d turn them down thinking I was signalling “I’d like to get to know you better, but ew pubs”, and they’d read it as “oh, ze isn’t interested, I’ll find someone else.” And so the only friends I ended up making were people from my course for whom that also wasn’t really an option – mostly older people, some of whom were married, some of whom had kids, all of whom I really had nothing in common with and lost contact with almost immediately after uni.
So! If the default mode of social interaction (I think “going out to a loud place and getting drunk” is pretty standard) is something you dislike, I urge you to think of alternatives. In retrospect, I really wish I’d said “hey, I don’t really like pubs because they’re too noisy for me, but how do you feel about grabbing a coffee sometime?” to a few of those people. Checked out which societies did more non-alcohol-and-noise socials, or suggested doing some to someone on the committee. “You know, we do a lot of these sorts of socials, but I think having [a picnic/a football match/a crafts evening/etc.] would be kind of cool.” There will be people who are interested in that kind of thing! NOTE: “I’m sorry, I can’t do X, can we do something else?” is a good start, but a lot of people will feel the burden is on you to come up with something better because you’re the one objecting to how things are.
The other big thing that screwed up me making friends in undergrad was executive dysfunction, or some horrible mutant offspring of it and my mental health issues. Essentially: I would be late to everything. I would want to go to things and then just… not go, because I couldn’t manage to put on my shoes or something. I would want to send e-mails to people arranging to meet up and find myself inexplicably incapable of doing so. Then I started missing more and more lectures, being almost unable to get out of the flat, answer the phone, do… pretty much anything, in fact, and on my to do list “making friends” got slotted as lower priority than “eating more than once every two days”. I blamed it on depression, then blamed it on laziness when I discovered that the issues didn’t go away even when I was feeling well.
I hate, hate, hate the Asperger’s stereotypes. And one of the reasons I hate them is this: AS is more than the social stuff. There are some huge issues that are common among autistic spectrum folks that can go completely unrecognised because everyone thinks “oh yeah, AS = socially awkward”. One example might be sensory sensitivities. Another one: executive dysfunction.
It took me four years to identify the issues I was experiencing as AS-related. I spent the entirety of my undergrad struggling with very basic things, socially isolated because I was so focused on not failing my course and managing basic life skills such as eating and sleeping enough, and not knowing why – thinking I was just lazy and had to try harder. When I did identify them, after mourning for a bit I started looking into diagnosis and support. These days my life is much better than it was, as I get a lot of support and accommodations. I really, really wish I could’ve had this in undergrad as well.
I’m worried that this is going to scare you when it sounds as if the last thing you need is to be even more scared about what AS means for you. Don’t be: this (at least to the degree I have it) isn’t really typical, and I’m happy and making a good life for myself despite it! But going from high school to uni means going from a very rigidly structured environment to one where you have a lot more freedom and flexibility, and it’s possible that things you didn’t realise were issues will crop up and make your life difficult. If they do, it’s best to identify them ASAP and get the necessary support set up and in place.
 in case you’re going “wtf, everyone will laugh me out of the room if I suggest a crafts evening”: my LGBT society actually did this after a number of people expressed interest! You’d be surprised how many people knit or draw or crochet or whatever. It was a very fun evening. 🙂
I was diagnosed part way through postgrad and I’ve spoken to a number of people diagnosed in adulthood or near-adulthood. Every one of them had periods of freaking out, every one of them has found the diagnosis positive in the long run. It’s okay to freak out, it’s probably even necessary, but if you got to your late teens without being diagnosed you were either raised by literal wolves or you have a fuckload of skills. They’re skills that will stand you in good stead, and in some ways you may end up in a better position than the average neurotypical who has never had to learn all the social interaction stuff you have, and may well fall on their feet when they have to adapt to something outside their comfort zone.
(Apologies if you were actually raised by wolves – but you’ve probably learned some useful skills from that, like hunting and shit.)
Whilst it’s tempting to view this as a fresh start, clean break, opportunity to become a new person whatever, I’d caution against it. There are so many times I’ve tried to do this and it’s ended up badly, partly because I upheld my transformation to standards of perfection and detail only an aspie would, but partly because it was actually founded on a bunch of myths, like there was no reason for me to find everything harder and I just needed to put the effort in, break the old habits or whatever. The truth of it is – and I’m getting this out of the way now – there are always going to be things you struggle with, you are probably always going to be living in a world not designed with people like you in mind, and there will be things about yourself people will struggle to accept.
The good news is that your life is probably going to be a progression of learning, adapting, and changing your environment. And this change in your life will almost certainly accelerate the speed at which you do that. University is – and I know everyone’s telling you this but it needs emphasising – much better than high school, and not just because physically attacking other students is actually viewed as a Bad Thing That Shouldn’t Happen (not bitter), but because there are so many more opportunities to shape things to your needs and preferences. You’re not going to be the only Aspie and you’re certainly not going to be the only one who’s a bit quirky or who finds social interaction difficult. You should also be prepared to make friends in slightly less than expected ways. Of the lasting friendships I made in my first year, most were not students. Two were people who saw me folding a huge stack of leaflets in a lecture and offered to help. Absolutely none of them were made through organised orientation week events or similar.
I’d suggest a couple of things to do now to prepare. They aren’t entirely related to the social aspect, but anything that makes things easier is going to mean you have more energy to put into things you find difficult. Firstly, particularly if this is your first time living independently, you’re probably going to run up against some time management and executive function issues. Every student does – but yours may be different and more pronounced. If you can afford it, I’d recommend getting a smartphone and experimenting with a calender and a task manager app. I use google calendar, which has the added bonus that I can sync Facebook events into it and Remember the Milk. They are a big help not only in organising study but in making sure I live a functional life, and giving me the reassurance of being able to see in advance the shape of the day ahead. I’d also suggest thinking about your new routine – it can help to have rules for yourself like “I will leave the building by 10am every weekday, even if it is only to walk round the building”. There’s a line between creating the structure you need and creating impossible standards that you’ll obsess about if you don’t meet them perfectly, but you’ll figure that out with practice.
Secondly, if you can’t already, learn to cook. This is one of the things I’m so glad knowing how to do. Because if you’re having a shit day and all you can manage is to cook a meal, it’s pretty awesome to have cooked a meal. You may well have sensory dietary related needs, and this makes you more independent. And having a lasagne in front of you will make flat tensions oh so much smoother.
Once you’re there. Disability Support Services are a mixed bag. I’ve had great experiences; practically all I have is use of a computer during exams, but my advisor is really good to bounce ideas off. I know some people don’t have good experiences, but they’re at least worth investigating.
One mistake I made was not spending money on things which I needed, sometimes because I didn’t have it, but sometimes because I percieved it as extravagent. This could be technology that could have really helped me, or appropriate food. You can’t magic up money by willpower alone, and if you don’t have it you don’t have it, but if you do or can find it, remember that you have needs other people may not, but are just as legitimate as food or housing, and you shouldn’t feel bad about meeting them.
You’re also probably going to feel tension between pressure to try new things and a desire to hide away from them. There are things I wish I’d pushed myself to do, and things I wish I hadn’t let myself be pushed into, and to some extent that’s probably true of everyone, AS or not. What I find really helpful is to think about the end goal. For example, I spent years being pissed off with myself for not being able to catch a ball (dyspraxic as well as AS). Once I figured out that the end goal was not to catch a ball but to get outdoor exercise, I was able to find alternate ways of meeting that goal. To use a more appropriate example, let’s say there’s a dance party on campus, and you know that at such an event the music will be overwhelming and will make you miserable and nauseous and there’ll be so many people you won’t be able to communicate with people. You can go anyway and feel like crap. You can stay home and feel like crap. Or you can figure out that the end goal is going to something fun on campus and meeting people, and therefore you find a movie screening or a quiz night that is much more to your tastes. (And I appreciate that some autistics would love dance parties!)
In short: there’s going to be change, and it’s going to be tough in some respects. You may not make friends as quickly or as easily as you’d like. But I also suspect you’re much better equipped to deal with it that you’d like, and you’re going to learn heaps and meet some awesome people. It’s a scary thing, but it’s a good thing. I wish you well.
I got diagnosed with AS about eight years ago (I’m 22 this year) and at the time, it didn’t seem particularly helpful. Today, I’m happy I was diagnosed for two major reasons.
1. I can get access to certain resources that makes my life easier. This can be a bunch of different stuff, like therapy with someone trained for your specific diagnosis, money, special blankets for people with sensory issues or help with house chores. You might not need any of those resources, but if you ever do, a diagnoses makes it a lot easier to get them.
2. Information. Having a diagnosis, for me, has been really helpful in understanding myself better and finding other people with similar problems. The last part is really great, because it makes me feel way less alone and can help me deal with AS-related problems better.
I’m sorry you feel so bad about your diagnosis and I sincerly hope things will work out for you. Some random thoughts and suggestions:
That anxiety you’re feeling about starting college? That’s really common. Going off to a university is a major life change and I think almost everyone feels anxious and nervous and uncertain about that. If there’s anything in particular that you’re worried about, maybe you could talk to a friend/therapist/parent/us about that and try to find some coping strategies? For example, if you’re easily distracted and are afraid you’ll never get any studying done with a room mate, look up local libraries. If you’re worried about straving to death because your dad usually makes your food, make him teach you how to boil pasta. You get the concept.
Maybe try reading some more about Aspergers? The media tends to portray us all like friendless nerds who constantly insult people, which isn’t true for most aspies. I’m in med school and I really like reading. An aspie friend of mine is on her way to becoming a diplomat. Another aspie friend of mine is really into art and philosophy and queer politcs. Yet another aspie friend of mine is really into getting drunk and partying. People are different, including people with Aspergers.
http://www.wrongplanet.net has a forum and lots of articles for autism spectrum-people, maybe you could check it out.
If you don’t have a therapist, it sounds like you should get one. If you do, have you brought up the way you feel about your diagnosis? Have you talked about feeling emotionally and socially behind others? They should be able to help you find some ways to deal with that and also to work on those skills if you want to.
I’m not neurotypical but I’m not diagnosed with Aspie either. However, my therapist has suggested I read books about/by Aspie folks, because we have stuff in common. So I am posting to suggest those books. Especially my very favorite, Asperger’s From the Inside Out, by Michael John Carley. He is very warm and sensitive and smart, and the book is full of strategies and concepts that really resonate. I had trouble giving it back to the library and I will be reading it again.
David Finch’s Journal of Best Practices is funny and readable, but at the end I discovered that the author is also a stand-up comedian, so I would take the rest of the book with a slight grain of salt. However he really made me understand about egocentrism, so I still recommend.
John Elder Robison is good too. I would say, avoid Shonda Schilling’s book about her son. It was really unfocused and very much about “how the aspie child affects their family” rather than “how the aspie child understands the world”.
I have Aspergers myself, and I just want to say, it gets better.
Autism/Aspergers runs in my family; although we didn’t have a diagnosis until about ten years ago, and we were just considered “eccentric.” My dad has Aspergers, my grandfather probably had it, I have it, and my youngest brother has autism. He’s sixteen years younger than I am and he was diagnosed while I was in college, and it was while we were learning more about his diagnosis that lightbulbs started going off for the family. (Lars wasn’t diagnosed right away because when he first started showing symptoms, the family looked at him and said, “Oh, isn’t that cute, he’s just like his big sister!”)
For me, I lived in a small town with a very tightly-knit family and a warm and supporting church. Everybody knew “that’s just how the Haugens are, don’t take it personally.” Going off to college–where nobody knew “that’s just how the Haugens are”–was very traumatic for me the first year. The probable diagnosis served to make me feel isolated. I didn’t get formally diagnosed myself even though I knew what the outcome was going to be, because I didn’t want to be stereotyped or pigeonholed. But it also meant that I had no resources to draw on–I was trying to figure out the rules of social interaction myself, and it didn’t work well. Second year of college was better. I found a group of friends and really started to make the most of college life … except my Aspergers was still the deep, dark secret I wasn’t dealing with.
So how was I trying to teach myself the rules of social interaction? I would tell people this: “I am kind of socially clueless. If I say or do anything insensitive, or you think I am missing something, please tell me.” One of two things would happen. Either they would say “Okay,” and then *not do it*, or they would ask me “Why do you think you are bad with people?” as if it was a self-esteem problem. Which, no, I am very confident, I am just not good at picking up social cues. It took me years–almost a decade–to figure out that even if people *said* they would let me know when I did something wrong, they weren’t *actually* going to do it, because they didn’t want to hurt my feelings or felt awkward or whatever. (This made no sense to me at the time, and even though I now understand it intellectually, it still doesn’t make sense emotionally to me.)
Anyway, fast forward a couple of years, and I was in seminary to get a Master of Divinity and become a pastor. And Aspergers was still this deep, dark secret that didn’t get picked up in the psyche eval they require before letting you in to a Lutheran seminary. (I didn’t try to hide it; in fact, I talked about the *effects* of it, but I never actually said the word to the psychiatrist who interviewed me, and she didn’t pick it up. To be fair, the whole thing was mostly designed to pick up thinks like pedophilia and serious mental illness, and my Aspergers is pretty high functioning, more so than I thought at the time.)
Everything was going great until my third year. Now, a Master of Divinity at a Lutheran seminary is not an academic degree, but a practical one. In other words, we don’t write a thesis, we do practicum work like a medical doctor does. So our third year is one of the practicum components; we do a full-year internship in a congregation. And I *still* hadn’t ever said the word “Aspergers” to someone, nor gotten a formal diagnosis or any kind of support.
It did not go well. I got off on an *extremely* bad foot with the lay committee whose job was to support me and evaluate me. They thought I was cold, demanding, unwilling to listen and learn, and from then on it shaped their understanding of me and everything they saw and heard. And I had no clue. So at the mid-year evaluation, my supervisor (the pastor) and I thought I was doing an okay job (not outstanding, not horrible, kind of average), but the intern committee thought I was failing in all but two areas. It was a nightmare. I had no choice but to resign–if you fail internship, you are out of the program and can never apply again.
At the advice of the head of the field education program, I took a semester off and went home. I got a formal diagnosis for Aspergers, but I also got two diagnoses I didn’t expect. One was for prosopognosia (face blindness). The other, *far* more important one, was for anxiety. And it turned out that *that* was my main problem all along. See, I knew I wasn’t good with social cues. So I would get anxious about it. When I was anxious, all my mental and emotional energy would go towards dealing with my anxieties instead of picking up and reading social cues, so I would be worse at it than normal, so I would offend someone or do something wrong and it would be a mess, and the next time I would be even more anxious, and it was this whole negative downward spiral, and I didn’t even notice because I was putting so much effort into pretending everything was fine.
I came back to school for my last year of classes, and I got counseling for the anxiety. It made such a huge difference, I can’t even tell you. To this day, I haven’t had much counseling for Aspergers, but it turns out that when I am not a walking bundle of anxieties I actually don’t need much support for specifically Aspergers issues, and what support I do need can mostly be handled by asking a friend if I’m picking up on the right things in a specific situation.
I did another internship and passed with flying colors. I have now graduated from seminary and am now working at a church while I wait to receive a formal call as a pastor. As for being pigeonholed as an Aspie, it’s been a lot better than I thought it would be. Generally, it helps me explain to people when I do something odd, but a lot of people are surprised when I tell them. There is the occasional case of someone who thinks having seen Rain Man and having a niece’s second cousin’s next-door-neighbor have a kid with Autism mean they know more about it than I do, but even that isn’t that bad, and it’s not all that frequent.
My advice: take advantage of all the help you can find, particularly at college. Pay particular attention to the ways in which your emotional state (and particularly your anxieties!) affect your Aspergers symptoms, because that can make the difference between your symptoms being a huge problem you can’t deal with that affects everything and a manageable issue. And don’t assume your diagnosis will define you or limit your possibilities.
Okay, breaking the rules slightly as I don’t have an ASD. This all comes from my experiences with my own psychiatric problems (ADHD), having a sister with Aspergers syndrome, and working in the disability resource center for a university.
It sounds from your letter like there’s a couple issues:
1. You actually have actual problems RIGHT NOW that won’t just disappear over time.
2. You are worried, because college will change almost everything about your life and you don’t know what new problems might crop up.
3. You are afraid other people will judge you by a label, because media & popular culture has turned asperger’s into a very negative label.
For problem one, get thee to a therapist! Obviously you’ve already seen someone, or you wouldn’t have been diagnosed, but continue going. TELL THEM YOU’VE HAD SUICIDAL THOUGHTS. Even considering suicide is serious stuff, and you need them to know how serious the situation is if they’re going to help you. In addition to a therapist, you might see if your area has support groups for people with ASD, or if there are any counselors who specialize in adults with asperger’s. Overcoming areas that you identify as problems will be hard, slow, and may never be entirely complete… but that’s okay. Everyone is allowed to have problems, having problems does not make you worse or broken or anything other than human.
For problem #2, you have legitimate concerns. If you’re moving away from home you’ll be losing your current support system at the same time a bunch of new, difficult, scary stuff happens. A lot of students (neurotypical ones included!) have trouble their first year of university. The best way to ease or prevent new issues is to find a new support system as quickly as possible. Your school will have a Disability Resource center – use it! “Disability” is a pretty loaded term, but you can have a “disability” if you don’t feel “disabled.” Even migraines count.
They’ll have counselors there, they can recommend other campus resources that might help you, like tutoring or peer groups, and they can arrange special accommodations based on your individual needs. I know at my school we have everything from extra time on tests to getting students housing with no roommates. The best part: It’s Totally Confidential. No one is going to blab your diagnosis to anyone else. And you don’t have to actually accept any of the services they offer – you can pick and choose only the things you’re comfortable with.
Problem #3 is a little different. The others are about you – things you have difficulty with, things that you are worried about. #3 is about how other people perceive you, and that’s something you can’t control. Here’s the good news: no one has to know your diagnosis unless you want to tell them. If you’re worried someone will judge you for having aspergers but you still want/need to discuss it, here’s a possible phrasing:
“I have a neurological disorder that makes it hard for me to _____. ”
They may respond with “Really? What kind of disorder?” At which point you say “That’s kind of personal, I’m not comfortable talking about it.” If they keep asking, just repeat that you’re not comfortable telling them. They are being A Big Jerk.
I’ve always found the biggest hurdle was convincing myself and others that the problems are real. The problems ARE real. People won’t always understand. For me, it tends to go “Hey, I have a neurological disorder that makes it very hard to focus, and so I need _____” and the other person says “Haha that’s not a disorder, everyone has trouble focusing sometimes!” No. Everyone has trouble sometimes, not everyone has this much trouble this often. You’ll find people doing the same thing to you – Any symptoms that are subjective are prone to this kind of response. Just remind yourself that it’s none of their business and they’re not privy to your brain.
Most of all, good luck! College can be a wonderful WONDERFUL thing, especially for those of us who had a hard time in high school. The world of a university is so much larger, so much richer, that you will find a place for yourself no matter what kind of person you are. You’ll get the chance to pursue your own interests and build your own life the way you want it. I really hope you have a great experience there.
In a slightly different perspective, LW, try not to pressure yourself to expect instant perfection from university. As a person with a lot of social anxiety and difficulty reading social cues, I kind of expected college/university to fix all of my problems, because “college will be awesome” is the rule, right? So when it took me a while to adjust and find my groove, I blamed myself for failing at College is Awesome and it became another thing for my jerkbrain to taunt me with. Eventually I did find my groove and My People and college did become Awesome, but it took time and effort to achieve, just like anything else. Best of luck and awesomeness (awesome-osity?) to you.
CA and commenters – I don’t have anything constructive to offer, but I just wanted to chime in and say, thank you so much for being helpful and compassionate and terrifyingly awesome about this subject. My 9-year-old son and I are in the early stages of a process that I’m pretty sure will end with his being diagnosed with Asperger’s, and reading these comments is going a long way toward making me feel less freaked out by this. Thank you all.
Please do say out loud to some counselor or therapist that you have been having suicidal thoughts. Someone needs to know you have been on this track.
Please also know that depression is very, very common in people with AS. I once came across a definition of depression as “the difference between reality and expectations”, and it seemed to me that since I seemed to have a different reality and the expectations (mine and others’) seemed unmeetable, I shouldn’t be surprised to feel depressed! I think of it as just another aspect of AS and don’t get down on myself for feeling down.
For me it was a huge relief to have a label and a classification, because I no longer felt my issues reflected some deep personal shortcoming. It also enabled me to easily find others dealing with the same issues–people who had advice on dealing effectively with various aspects of AS. Wrongplanet.com has been a nice place to visit, for sure, just to get away from the NTs for awhile.
Please do say out loud to some counselor or therapist that you have been having suicidal thoughts. Someone needs to know you have been on this track.
Also know that saying this may prompt the counsellor/therapist to take action on your behalf, but will not instantly get you sent to a hospital against your will! Ask your counsellor/therapist what the rules are about duty-to-protect. They should be willing to tell you in the first session, “If you tell me X, Y, or Z, I have to do something about it. Everything else is confidential between us.”
Where I am, if a client tells me he/she is suicidal, I have to do an assessment of how likely he/she is to commit suicide in the near future. If it’s a low risk (thinking about it, but without a real plan or timeline) I might consult with other therapists in a hypothetical, “If I had a client who…” way to make sure I’d made as good a call as possible. If it’s a high risk, I’d have to actively make sure there were supports in place–the client has resources to turn to when he/she feels suicidal; if the client is a minor, the parents/guardians are informed; if not already, the client gets referred to a medical professional. This may involve, if the client agrees, walking down to the local emergency psych ward for a voluntary admit. It’s only when the risk is imminent (“I stopped by to say goodbye and thanks for all the work you’ve done, I’m going to go jump off a bridge now”) that I have to call 911 or the police to make sure the person is safe. And even after all that, in my province, we cannot compel anyone to stay in medical care past the initial 24 hour period.
This is interesting because I have talked about suicidal tendencies in the past to my psychologists/psychiatrists, and never said “I feel like dying right now” or anything triggering, but before the session with this one psychologist in particular ended there were police there to take me to the hospital.
It was the scariest thing that’s ever happened to me.
The risk was NOT imminent and I had previously discussed these things with other professionals with absolutely no hint that they were still an issue.
She told the police that she was scared for me and that I wasn’t “able” to decide for myself because I have Autism.
Why is it that this person could sign my life away over something that was not imminent?
By the way, the judge deemed me perfectly competent and not suicidal and apologised for what happened after 24 hours.
Oh man, that really sucks. I’m sorry you went through that. I guess the picture I painted was a little rosy. >.< That's the way I do it, but it's not the way everybody does–especially if your therapist has bullshit ideas about ASD/mental illness that makes them think you stop having judgment or free will.
Not everybody has the same way of assessing risk. My area of specialty is complex trauma and borderline personality disorder, where suicidality is just there all the time; I myself go, "Okay, feeling suicidal, it happens. What's the risk?" Other clinicians I know go "ZOMG SHE SAID SUICIDE CALL 911." and would rather have a not-suicidal client go to hospital than a suicidal one commit suicide.
As therapists, we have the legal responsibility to assess and act on suicide risk, and if we make a wrong call that allows our client to seriously harm him/herself or someone else, we get in serious shit. It sucks for everyone involved. It especially sucks to be a false positive. I really don't want to work in a jurisdiction that does allow long-term involuntary commitment, because of the kind of thing that happened to you.
A lot of therapists don't discuss the X, Y, and Z that mean they have to take action, and it pisses me off. Most therapists should if asked, be willing to explain what those exceptions are and what happens if they're set off. ("Most" but not "all", because in some areas, especially child abuse, therapists are legally prevented from "coaching" their clients in how not to divulge.) Asking first is the best way to make sure you know what's going to happen.
I appreciate the response. I think you’ve hit the problem on the head.
The lady I was speaking to at the time was afraid of my records before she had even talked to me. She didn’t have any specialisation in Autism and was part of a “Christian Therapists” group, and knew from my profile that I was an Atheist (my parents were making me go at this point lol I was 17).
This was my first session with her that this happened.
I haven’t gone back to therapy since because of this extremely traumatising experience.
I think in the future I will go back eventually, but your comment may have saved me a LOT of trauma in the future.
Always ask, and always get an explanation!
I really appreciate it!
Also, a warning: at some schools (mine included…) expressing suicidal thoughts to the university’s therapists can lead the university to try to force you to “take a year off” or whatever. So find out what your college will be like, and tread with caution. If your therapist is not affiliated with the university this is not a problem, but since mine offers free counseling a lot of people take it and then get surprised when they start getting pressured to leave school — even if leaving school would be absolutely terrible for them at that point in time.
I’ve been going to uni for a year now, and things aren’t good. At the end of the last semester, my stepmother asked me if I thought it was possible I had Asperger’s. I didn’t really know because I didn’t know much about Asperger’s at the time, other than one of my friends has it.
At first I was fine with the idea, and was just kind of bemused that my stepmother was acting all careful about it when I don’t care, but after I saw the way my dad reacted whenever she brought it up, I kind of started to freak out.
I don’t care if it turns out I have it or not, that would be true regardless of whether I know about it or not. I do care, however, how people are going to treat me afterwards if I do have it. My dad, melodramatic as he is, looks like someone’s telling him I have terminal cancer whenever it’s brought up, and this is REALLY starting to piss me off. The only friend I’ve told about it acted really awkward, and we pretend that didn’t happen, but I’m not going to talk to anyone else about it. I would talk to my friend who’d been diagnosed with it, but I don’t even know if I actually have it, and if I don’t I’d feel like a jerk.
I’m also bothered because if I don’t have it, fine, my failure so far is my own fault, I just need to work at not sucking. But if it’s just the way my brain is wired, how the hell am I supposed to change?
I just don’t know what to do about it, and I still don’t know if I have it because we haven’t gotten me diagnosed yet like we were going to, and now I’m seeing disability services at my uni (an old incorrect ADHD diagnosis qualifies me) and they’re treating me like I can’t do anything by myself and it’s just driving me a little bit more crazy than normal.
I feel for you on this. There’s a lot of stigma attached to Asperger’s (and most neurological disorders). It might help to remind the melodramatic folks that a diagnosis is only an explanation…. it doesn’t change or create anything about you.
If your dad REALLY freaks you out with his reactions, remember that you don’t have to tell him! Your psychiatrist will keep the info confidential. If you think mom’s gonna spill the beans to dad, you don’t have to tell her either. This is private, personal stuff and you are a grown up. It’s none of their business or anyone else’s.
Oh dear… and this bit breaks my heart. “I’m also bothered because if I don’t have it, fine, my failure so far is my own fault, I just need to work at not sucking. But if it’s just the way my brain is wired, how the hell am I supposed to change?” Hun, I don’t care what’s happened or what you have/haven’t done…. you don’t suck. You are not a failure. Everyone stumbles sometimes, and maybe you stumble more than most. That’s okay. Life is not a competition, life is a potluck. Everyone has fun, tries the new things other people brought to the table, and shares their best with everyone else. So what if the jello you brought looks a little funny? You’re just as good a person as that guy with the tuna casserole.
The difficulties you face are real, no matter what causes them. There are things you want or need out of life that you haven’t gotten. There are probably other people who have expectations of what you *should* want or *should* have accomplished by now, and they’re probably ignoring all the things you already HAVE accomplished. Find a trusted non-judgmental person to help sort out your own achievements, desires and needs. Are your needs being met? Are you moving towards your goals? It’s okay to look for help in getting what you want. You are not a jerk for wanting to learn how to help yourself – that is the opposite of jerkdom! Ask that friend.
If you do have Aspergers, or any other diagnosable condition, the diagnosis will give you an idea of what things worked for other people with brains wired like yours overcoming the same difficulties you have. That’s all. If you don’t, it just means you need to find your own solutions through trial and error. A diagnosis is not a life sentence that things will always be exactly how they are now, it’s something that helps you learn about yourself and know what the easiest, most effective ways are to do what you want to do.
I’m also bothered because if I don’t have it, fine, my failure so far is my own fault, I just need to work at not sucking.
Except you’ve already been diagnosed with ADHD. This means that, even if you don’t have ADHD or Aspergers, you have *something* that makes basic tests of brain function light up like a Christmas tree. Your brain, on some level, does not work like the NT standard-issue brain. That is not your fault, and that’s something you have to work around. (I have ADHD and just went through a week of being unmedicated and HAHA WHOO executive function disorders are no laughing matter. If I didn’t have an understanding professor, I’d have failed a course.)
I’ll try a metaphor and hopes it works: I was born with three fingers on my left hand. It looks like a raptor-claw and is sometimes cool. But anyway, it’s a really tiny hand, and I have trouble holding things with it. When I’m driving through a drive-through, it’s the hand that’s facing the window, so it’s the one I naturally use when handing the cashier money, or taking things I’m handed. If I try to take a handful of change with my small hand, it is quite likely I’ll drop it. I can handle drinks moderately well, and bags best of all. If I concentrate very carefully, I’m more likely to hold onto things I’m handed. So you could say that my dropping shit is because I’m sloppy and careless. After all, when I’m tidy and careful, it’s easier!
On the other hand, when I just go, “Self, get over it, it is a raptor-hand and this is not what it is good for! Stop pushing yourself just to seem normal!” I do something different. I take my right hand, which has five fingers, and reach across my body to take the change. I grab it safely every time.
Whatever is up with your brain, it’s making you fumble some things and fail. And yes, it is maybe-possible that if you just worked hard enough and carefully enough and diligently enough you’d catch the change, or do your work, perfectly. But if you get to know just where your weaknesses are, you can find ways to work around them using things you are capable of doing well without busting your ass all the time.
I’m not autistic or anything like that. I *am* a rapid cycling bipolar with an anxiety disorder. I did not get this diagnosis until I was almost done with high school and getting ready to go to college. The thing about a diagnosis is, it doesn’t change who you are. You are not a different person than you’ve been before now that you have a diagnosis. So don’t be upset about that.
Another positive is this, now that you have a diagnosis, it will be *much* easier to work with a therapist and your school’s disability resource center (because it’s much easier to talk to them with a specific diagnosis that they have programs and resources in place for than it is to go up to them and be like “well, you see, I have these issues, but these issues don’t have a name, and can you help me with school and with them???”)
As a last resort at making you feel better, I was once friends with this guy, who had Asperger’s syndrome and paranoid schizophrenia badly. Like he was convinced all of life was a war and you either were for or against him (we quit being friends when he decided I was against him and started making up lies about me and telling them to my whole family.) This guy, who was always convinced he was at war with everyone, managed to have a large circle of friends when I knew him, and even more in college. So, just saying, if this guy can manage it, there’s a lot of hope for you.
Just relax, don’t worry to much, and go into it with an open mind ^^
Oh, something that just occurred to me to pass on: There are autism support groups, formal and informal. I have yet to see one that’s actually an autistic-norms-centric social space; usually they’re full of people who believe that being autistic means there’s something wrong with them and are trying to get as close to neurotypical as they can. You probably gathered this from the other responses here, but that’s not a feature of autistic-people-in-general; it’s a feature of the kind of autistic person who feels inclined to go to a support group for it, and it’s okay to disagree with them.
(There may be support groups that don’t match that pattern; I’ve never seen one, but it’s been a few years since I bothered checking any of them out.)
Wow, this whole discussion is really resonating with me. I should probably look into that whole therapist thing some time to find out for sure.
Letter Writer here, thank you all kindly for the advice, and my apologies for not replying here sooner, I’ve been monumentally busy with stuff around my house these past few weeks. I actually graduated high school back in January after doing an extra semester, and while things have been sort of getting better, difficulties finding a job to tide me over until I go to university in September paired with still having the mentality so graciously bestowed upon me by my peers through the endless harassment I received in the past few years are giving me a challenge. I still have a long way to go, but I honestly think reading the advice here will help me a lot. In fact, I’m going to bookmark this post and come back to it whenever I’m feeling down.
It was our pleasure.
Getting a job in this economical environment is hard for everyone. Is there a Career Rehabilitation Centre nearby to you? Contrary to the name, they work with straight out of high school students as well.
If you need to vent about it, please feel free to contact me; you can even do so anonymously.
I’m not sure to be honest, I’ll have to look into that though.
I don’t know if anyone has mentioned this (I might have missed it), but keep in mind that having this diagnosis doesn’t mean you are stuck with today’s limitations for ever and ever.
For one thing, ASD is a _developmental_ disorder, which means that it tends to become less severe over time — or at least, its impact does. (I don’t know if it’s because the brain matures in some way over the decades or because it finds more work-arounds.) For another, the expectations you face as an adult are different from what you face as a kid. Being “different” is much more of a calamity as a kid, because everyone is trying to hammer you into The Mould. As an adult, you only really have to do your job and not break the rules.
I’ve noticed both with my son, who was diagnosed with Aspergers basically as soon as the DSM came out that had the diagnosis. Most of the issues that were a big problem in grade school have simply gone away. And he found a few friends who accepted him with his quirks. Finally, he went off to college. He’s doing great, despite refusing any of the services of the disability office there. And, yes, he has had a roommate all this time.[*]
I think it continues to improve even after college. We believe my dad and my father-in-law had some sort of ASD (though we can’t be sure since the diagnosis wasn’t around when they might have been diagnosed) and both had jobs which required people skills — something that it’s assumed that ASD makes impossible — and they both did very well at it. They were also caring fathers and grandfathers. Granted, not every ASDer will be able to do this, but then, neither will every NT.
[*] Yeah, we worry what will happen after college. But then, what parent doesn’t?
I understand how you may feel out of place because of your differences. I was diagnosed with Asperger’s Syndrome at the age of 11, and when I was in early childhood I didn’t talk much to other people, didn’t really socialize much at first because I have a twin sister. At the age of 8, I used to go around asking people everything about them, and finally made some friends when I moved to an apartment complex. In grades 4 through 6 I was chronically bullied by other students at school, often told to go to the end of the line even when I wasn’t cutting, often told to say things that I shouldn’t say, often told to answer inappropriate questions, often told to approach other students in some inappropriate way, and people thought it was funny that I was naive enough that I listened to everything the other students told me to do even if it was wrong and not trusting of my own instincts. I wanted to change my ways for the better badly, but it only took moving to another school to better myself, in addition to karate classes. While I can’t blame you for how your past situations led you to feel badly about yourself, being bullied as a child/preteen never stopped me from making even the slightest attempt to make new friends, and I don’t want you to let your past get in the way of your present either. I make new friends everywhere, and many people tell me I’m far more extroverted than many people with Asperger’s Syndrome, yet more recently I’ve had friends who treated me like a doormat and weren’t actually real friends, and my self-esteem has been damaged because of such treatment, but I refuse to let that get in the way of my everyday life. Since my diagnosis with Asperger’s Syndrome I found my destiny, and my destiny is to give back in honor of how people helped me through my struggles with Asperger’s Syndrome.
I’m less than a month away from being 24 years old and I am a junior in college, 3 to 4 semesters away from graduating, I hope to graduate in fall 2013. I started late because I wasn’t great with doing shit loads of homework as a teenager, and wasn’t swamped with homework at my special education private school that I attended. In school I was a terrible test-taker and I struggled with reading comprehension badly, like I can read above my own grade level, but often times have trouble comprehending what I read. I went to a community college first because I never took the SAT’s due to poor test-taking ability, had to start out taking remedial courses before I could take anything college level, after flunking the placement test, I started out as a part-time student and I transferred to a four-year university 2 hours away from home as a sophomore. When I started out at the university, I struggled to make friends and I was hospitalized for an unintentional alcohol overdose caused by me not eating for several hours before I drank hard liquor, but that day still haunts me at times despite how I’ve moved on and become more cautious of my alcohol intakes, and that day of my hospitalization was 2 years ago.
Despite struggles to make friends and keep friends, I’ve had a harder time keeping a roommate in college, and went through 4 different roommates in a year and a half. I don’t require a single room, and yes I am compatible with some types of roommates, I’ve just been in the wrong situations often times. In my university, 2 dorms are conjoined by a private bathroom, and the people who shared a bathroom with you are called suite mates. My first roommate and I got along very well as friends, but as roommates, we didn’t stay roommates long because our suitemates fought a lot due to one liking peace and quiet and one liking the TV and music on all day and all night even when asleep, and my roommate liked quiet too, and went to bed earlier than me, so she and my loud suitemate traded spaces and while my second roommate and I were very close with each other when we were roommates, her friends started out as friends to me and some of them turned against me, bashing my differences because I am an Aspie who likes different interests from what they do (one forced me to watch porn when I clearly said I hate porn), but my roommate understood me very well. After her friends gave me a hard time, I left my original dorm to live with my best friend in the university, but I lived with her more so because she and I have more in common than I did with other roommates, as great as my old roommates were. My third roommate and I were and still are 2 peas in a pod and we would have continued as roommates, but her parents forced her to commute due to financial issues and the girl who was randomly assigned to me afterwards also bailed out on me. For a semester, I lived with a friend of mine who I later found out is rich and spoiled and used to her parents doing everything for her, she also has learning disabilities (not an Aspie). My suite mate, on the other hand, was my second roommate’s best friend, who I am also friends with. The next semester I moved out of my dorm and the girl who was supposed to be my roommate bailed out on me, leaving me to not have a roommate at all that semester. However, one girl forced me to let her be my roommate illegally because she was forced out of her dorm due to serious financial issues. I felt bad for her despite how she took advantage of me. The girl got banned from the dorms after living with my most recent ex-roommate, after my ex-suitemate told on her, and the girl lived with me illegally for 3 weeks, I kept it secret from the staff until the resident director of my residence hall caught her violating her ban from the dorms and living with me illegally, she had me file a report against that girl in order for me to not get penalized, since she understood that I’m an easy person to get taken advantage of due to my disabilities and personality, then again, a lot of people take advantage of me for being kind and generous. Another common struggle I face in the university is random creepy college guys asking me to make out with them, hug them, or come into their dorms, but usually it doesn’t mean anything because I have no problem being blunt with creepy guys I just met and getting them to leave me alone.
The biggest thing I have to say is, don’t let your past or the way people judge you get in the way of your daily life. Don’t give up, you will make it through life smoothly! I can definitely see you thriving as you get older even though I just met you!
As for how to make friends, some great ways of doing so include joining clubs at school, and some residence halls have community lounges (I used the residence hall community lounges to do homework). Some moments, I would sit with random people during meals in the dining hall at school and usually people appreciated that. More often than not when meeting people, I’m open about telling them I have Asperger’s Syndrome because it helps my new friends understand me better. If you tell someone about your Asperger’s and someone ridicules you for it, he/she is completely not worth your time!
There was a good article in io9 today that I thought “wow, that is the perfect thing for this letter writter to read!” You are not alone, and honestly, I have been thinking for a long time that people on the autism spectra are becoming more and more integral in moving our society forward.
I wish you the best, lw, and hope you are able to find your self-confidence and courage. The rest of know its there.
I may be too late here, but I had to comment. I’ve been through uni, was diagnosed with AS age 7 and also had similar experiences in high school. Having read through your letter I can’t say this loud enough: don’t worry, you’ll be fine.
You say you feel you “have none of these [stereotypes], in fact for the most part I’ve gotten along just fine with people, even if I have a little bit of trouble making friends in the first place.” – that is the only important thing! I don’t know how you came to be diagnosed with Aspergers Syndrome so late, but it doesn’t matter – it doesn’t have to affect your life in any way in which it didn’t before and especially not negatively. All it means is that you meet a certain number of criteria, which are phrased entirely neutrally.
I hope that you will be able to see the diagnosis as a step towards understanding yourself – think about it and how the diagnostic criteria (NOT the stereotypes) apply to you. Remember that most of the problems associated with Aspergers Syndrome are only critical to young children, and that many of the “lacking skills” could easily already have been acquired. Also remember that you don’t have to wear a badge or a sign above your head declaring your diagnosis, you have the right to remain silent about it (and I would recommend doing this unless someone is genuinely interested or demonstrates that they actually understand the Autistic Spectrum).
As far as the difference between school and university goes, the last years of school are about the most stressful of any teenager’s life, and the transition to university tends to be a massive sigh of relief. If you can make that transition with a new understanding of yourself to go along with it, you can be pretty sure your university experience will not be a repeat of your high school experience. I did this – my new understanding around that time was that my personality didn’t have to be dictated by the AS diagnostic criteria and stereotypes, so please don’t fall INTO that hole!!!
Remember that most of the problems associated with Aspergers Syndrome are only critical to young children, and that many of the “lacking skills” could easily already have been acquired.
I, er, don’t want to come across as negative, but this is completely the opposite of what I’ve seen. Social skills become increasingly important with time, and, if AS were so easily overcome at such a young age, it really wouldn’t be worth a diagnosis.
I’m not sure this kind of optimism helps (and I’ve seen this *far* too often in all sorts of contexts). A lot of people think this means that people will realize that things are going to be *great*. What it often means, however, is that people for whom things *aren’t* going great feel even more alone.
And, to be doubly non-optimistic, I see a *lot* of college-age (or just post-college, as you are, from what I’m reading of you) people say that, well, it doesn’t become an issue at all past high school. Which is *completely* wrong — in fact, people require *far* more social skills as an adult. College is also a place where it’s very easy (for both NTs and non) to make friends — you’re in a place with a lot of people your age and who have similar interests, you have a lot of time to hang out with people (even when you’re working, you tend to be working with people), and, in your free time, it’s really easy to find other people. Once you get out of college, things get a lot more difficult.
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