Autism is often a hidden disability. There is no universally visible signifier–no mobility aid that we all use, no assistive technology or service animal or language common to all or even most autistic people. While many of us use assistive technology, many others go through our days–our lives–passing for nondisabled.
Or do we?
If you’re autistic, you can probably recognize other members of the tribe fairly easily. Maybe by their stims or their use of AAC, their noise cancelling headphones or by the body language that’s so like your own. We all have our tells.
I know mine. Atypical eye contact and body language are the most obvious. Occasionally my voice gives me away as different–it’s too loud or too mumbly or too flat or simply decides not to exist. If none of those is a tip-off, well, it’s only a matter of time before I have a social communication mishap.
Still, I go through life quite convinced that I’m passing. That my disability is oh so well hidden.
What is Passing?
The concept of passing originates in racial identity. In societies where being classified as a certain racial group leads to discrimination (or worse), some members of that group may present as members of a different racial group. For example, some people with African ancestry passed as Arab or Native American to avoid segregation in the US. Some people of Jewish ancestry passed as Aryan in Nazi Germany to save their lives.
Today, people with hidden disabilities are said to pass when they present in a way that conceals visible signs of their disability. Many autistic people make a conscious effort to pass. Not stimming visibly is a way of passing. Giving the “right” answers to the social communication questions on a job screening test is a way of passing. Going out for a beer with workmates when you’d rather go home and curl up in front of the TV is a way of passing.
Is passing bad? That’s a hard question to answer. What if passing in an interview is the only way to get hired? Getting a job is good. Keeping a job is even better. But accommodating employees who have hidden disabilities is often a challenge, even for employers who actively seek to hire disabled workers. As a consequence, employees who pass to get hired often feel pressure to continue passing.
Given the stigma that surrounds ASD, many adults choose to try to pass in most areas of their lives, disclosing only to the people who know them best. Disclosure is hard and often brings unwanted negative consequences. Passing, on the other hand, has become second nature for a lot of us. We’ve grown up learning all sorts of little tricks to pass and often we do it without thinking.
Failing at Passing
But how good are we at passing, really? How hidden is our disability? I’m guessing a lot less hidden than we think. In fact, I’d go so far as to say autistic passing is a myth.
We can pass for an hour or outing, a first date or a job interview. We can prepare and practice and hold it all together for an allotted amount of time. Some of us can even keep all of our ducks in a row for days or weeks at a time.
But passing in the long-term–in life? That’s a myth.
For every hour that we manage to pass, we spend two or three or five recovering. We pull off a great passing act at work and pay for it by needing the whole weekend to recharge. We juggle a full class load like our typical peers and end up overwhelmed to the point of illness by midterms.
Because passing is a myth. So often what we’re doing when we’re passing is simply keeping a lid on our natural tendencies. And sometimes we’re not even doing it very well.
I can’t be the only one who gets labeled cold, aloof, weird, geeky, standoffish, awkward or selfish. If I were truly passing, would I be getting slapped with unflattering labels like that? Probably not. It’s not like I’m intentionally adopting those characteristics. In fact, I’m often trying very hard to project just the opposite.
Which raises the question of what’s worse–being labeled autistic or being labeled those other things? When I think about it like that, trying to pass seems less useful. I mean, is it really better for people to think I’m intentionally cold or aloof or selfish than for them to know that I’m autistic?
Increasingly I’m finding passing less appealing. The Scientist says that since I was diagnosed, I’m much more relaxed and he’s right. I no longer have my guard up all the time. I’m no longer so conscious of putting up a front that says normal.
The pressure to pass can be intense for autistic people. It can also be debilitating. It robs us of who we are and cloaks us in disguises that are ill-fitting and unflattering, leaving us stranded halfway between a fictional ideal of normal and the truth of our real selves.
Musings of an Aspie 
Yes, yes, yes. I may still be a teenager, but the moment I see someone with the slightest ASD, I can tell. I don’t know what it is–be it on TV or in life, it’s the clearest thing to me. For years, I “passed.” That is to say, I was able to manage to hide my stimming and my need for routine by showing off. I was thought to be a genius by my friends, but everyone else? They thought I was a snob. Well, too bad for you. I found out I was autistic just over a year ago now, thanks to my cousin. Today is the day I get to thank her for letting me realize–stimming is alright. Refusing to deal with assorted things is alright. Being autistic is alright.
(P.S. My newly established blog, a few months old, is here:
wordsofautism.blogspot.com
I’m still getting it going, but it’s going well!)
Thank you for the link to your blog – I’ll check it out. 🙂 I think people forget that some autistic individuals pass not by disappearing or blending in but by acting out. Often anyone who is too outgoing is automatically deemed “not autistic” because they don’t fit the stereotype. It’s great to hear that you were able to recognize your autism and that you’ve feeling good about it.
Yes. OMG yes. My youngest son is considered “too outgoing” to be on spectrum. All it takes is one day (maybe even just one hour with him) and he reveals his “hidden demon”.
He LOVES people and being with them, but once he started trying to pass he was left exhausted every evening. He is 18 (on the verge of 19) and I wish the people who tested him had seen beyond his being outgoing. That they could not see it is beyond believable and his not getting that release in his life is not good for him. I see how much it has helped my 20 year old to finally have a diagnosis.
My six year old also just went through testing and he scored on massive ADD, severe anxiety, massive sensory needs, OT needs … Basically in every area but because he made appropriate eye contact ( we worked with him) and he was outgoing they denied autism. Yet the rest of our family and helis brother is on the spectrum… My son just has another way of expressing it. It’s very frustrating what professionals think they know!
TOTALLY! I am thought of as very outgoing and social, because I’m always talking and showboating and cracking jokes- in public. But then no one can understand why I have to take days or weeks off by myself.
I think it really hurts people’s feeling to think I’m ignoring them, but I just can’t help it. My mother describes me as “elusive.”
I’m going through a bad “breakup” with my closest friend over this. She says I’m not meeting her needs as a friend. Anyone have any ideas on what to say to her? She doesn’t really “believe” in Aspergers, given some comments she made about the child of another friend of hers. She only know about my ADD.
Kashi:
If she does not believe in your diagnosis or the core of who you are – do you really want to be good friends with her and is she really a ‘good’ friend? Or maybe she is and she just needs time and a lot of explanation at first…but it sounds like she is not quite compassionate enough…
My bestie was tentative to the idea at first but warmed up really fast and even read Aspergirls for me! She also reads any articles I send her and we have tons of discussions on it. I guess I am lucky. In return I make her many Cds ( my gift is music and she does not have that gift so she loves my playlists) and listen to her Nt worries patiently and try to give back what I can. I know I am probably the more high matainence but all in all she says I am not boring and that is why she loves me. You will find people who love you for it- I promise.:)
You could just tell her. It will make a huge difference in how she understands you. As soon as I found out, I started telling EVERYONE. And it helped! My relationships started improving almost immediately. People who care about you want to understand you. I recently had a talk with a college student at my church (I lead the college women) because she felt hurt by some things I’d done and said even though she knew i loved her. When she found out I was autistic, she immediately became way more understanding. I was also counseled by an older sister in the church to contact each of the college women and explain exactly what my tendencies are so they can tell me if I’m doing something problematic. It’s exhausting trying to guess out how you affect people without their feedback!
Besides if she’s already checking out of the relationship, what have you got to lose? Even if you can’t salvage the relationship, maybe she’ll think twice the next time she’s about to say something about someone with Asperger’s.
“some autistic individuals pass not by disappearing or blending in but by acting out.”
This. People think I’m gregarious; I’m not. In a new situation I will try to do this out of a sheer need to survive. I’ve been burned down and bullied before for the reason that I was too quiet. I noticed that the more comfortable I am in an environment, the more I will find a balance between this acting out to survive and being me.
Thanks for writing this. You are awesome 🙂
Thank you. 🙂
When I SD’d in my 50’s as Aspergers I finally joined the human race instead of fighting for my life all the time. I am not in the ‘help me’ box, I am in the ‘coping well’ box at age 67. I am beginning to love my Aspergers and read about it on line all the time. But I am also “…not Temple Grandin…” or a child or an Asperger stereotype. I always think I am ‘passing’ and am continually surprised to find I am not. Gleefully surprised from now on. All these words are just to say that your blog and its readers and responders is tailor made for my current understanding of this particular ‘now’ and I love the insights found herein. Thank you for your contribution to my understanding.
This is a really excellent and insightful post. Thinking about it now I realise that it was my failure to pass successfully for so many years that led to my dx. Maybe now I am more knowledgeable of what makes us different and I am able to suppress that more? Although recently I disclosed to someone I have worked with for about a year, he was moving on and he had followed me on twitter, he was going to find out. His response was a smile and to tell me that he had realised I was autistic after 10 minutes of meeting me.
I think it was a deterioration of my ability to pass (such as it is) that led to me getting diagnosed.
That’s great about your friend being so cool and accepting. 🙂
My attempts at passing simply result in me being written off as slightly-more-socially-acceptable varieties of odd. Which is okay.
I think this is the same for me, now that I’ve stopped kidding myself about how well I’m doing it. 🙂
I’ve never been good at it. And, probably because I had a close-in-age sibling who’s as socially competent as I am incompetent, I was never granted the bliss of ignorance about it – if she wasn’t pointing it out, my parents and teachers were.
Yes this is very true and poignant for me. After 30+ years of ‘passing’ I no longer know who I am :o(
I sympathize with this feeling. Recently I often feel like I’m rediscovering my true self, digging it out from under so many layers of . . . I don’t even know what.
I can’t even begin to say just how much this describes me at the moment.
After just shy of 40 years of passing, some subconsciously and at least some unsuccessfully, various things have set me on this journey. I’m self-diagnosed only for now (we’ll see where that goes) but after extensive research I now have a totally different frame of reference for myself. That is giving me almost constant rediscovery of my self. It’s odd, and not always good (though in the long term I am sure it will be).
The realisation that either (a) I’ve not been successfully passing when I thought I was, or (b) I was trying to pass unknowingly, is fascinating. What is interesting is that I can now see that there have been many times I’ve tried to pass, but not because I thought there was anything ASD-related to hide, more that I just thought it easier if I acted “like everyone else”. It turns out I was maybe right but for the wrong reasons. Wow. (Please don’t interpret this to mean I believe passing is always right. I just mean for me, at that time, in those circumstances).
I’m new to this blog. Apologies for jumping on old posts; quite a lot is new to at the moment.
Reblogged this on Appalachian aspie..
Thank you for the reblog! 🙂
I never thought of what I did growing up as passing: I was just trying to fit in, to be like others I saw around me. It didn’t work that well. I was always different, odd, weird to the extent that I claimed those terms as my own and began to take pride in my differences. And then… Aspergers. And things began to fall into place. I’ve gotten a lot of learned coping strategies — that’s to be expected by the age of 40 — but I no longer make an extra effort to hide, to fit in. And I’m happier being natural, being myself. Like you I’m more relaxed now. It’s good. Thank you for such a lucid explanation.
I’m so much happier being myself too. At least most of the time. Occasionally it’s hard and humiliating and frustrating but I suppose everyone feels that at times, regardless of neurology. At least now I feel true to myself.
“Trying to fit in” YES!. I desperately tried doing that until my early teens when I realised it was a lost cause. The harder I tried, the more teasing and bullying I received. So I changed to trying to be as unnoticeable as possible. While it wasn’t entirely successful, I was far better at that than at fitting in. Even today I have a tendency to try to “blend into the background” when I’m in an uncomfortable situation (which is most social gatherings of more than about 5 people – even close family).
Wow, I just posted above but this, this, this. This is me.
Thank you for the clear perspective and the taking of a stand in this post. I am in all sorts of trouble with the family of origin for my supposed coldness, aloofness, non-communicative nature.
And last night and today is a recovery day from 24 hours of opening my house to a sibling who has never liked me, sides with the other siblings, enjoys humiliating me, but wanted (reason unknown) to visit me for 24 hours.
Sometimes I can barely hold it steady. i cannot let myself slip out of diguise for a split second with a visitor in the house, because I’d never get my self back “into it”. When they left, I was utterly exhausted and in a dark place. I hope by tomorrow to be functioning like myself again. Knowing that someone else has the same experiences gives me my self esteem back.
I’m sorry you’re having such a rough time. Siblings can be ruthless. Take your time and be gentle with yourself. You’ve earned it. 🙂
You know … I have that exact list of labels too when people don’t know I’m autistic. I hate it because I am a very empathetic considerate deeply caring person but that doesn’t always get read. It’s very rare for me to find someone who knows how those exact labels feel and being misunderstood. I can’t believe that your list is full of terms I’ve been accused of! The only other gal I know personally who also gets accused of this list is also autistic.
I am disclosing more and more that I am autistic but it still sometimes ads unfortunate presumptions regardless. There is a lot of ignorance out there. Just the other day our brother in law said that our diagnosing of our children ( officially) is finding “something wrong” with them when in fact they “just need to face their sinful nature.” In his religious mind anything physcholgical is sin based and an excuse instead of a way of being. I was blown away by that statement. How do you even begin to be who you are when people think that way?!
Disclosure can really be a “damned if you, damned if you don’t” situation. Though I think your story is the first I’ve heard that involved literal damnation. Wow. I have no comeback for that kind of thinking. I’m so sorry you had to be on the receiving end of that. That’s really awful and discouraging.
Some people are so convinced that everything stems from sin they forget we live in a fallen world. Not everything we go through is a result of something we’ve done. My father is bi-polar – he was forty when it first manifested, and boy did it manifest! The pastor of the church we were going to at the time told Dad that it was a result of some sin that he had not confessed. And then some other church lady, when she was over at the house looking at mom’s cross stitching, said that the native american pictures hanging over their bed should be taken down because they ‘invited evil spirits into the house’ and that that was why dad was having his issues.
I heartily disagree with this, and I will never agree with it. Life isn’t a punishment, and the situations we find ourselves in are not always of our own making. It is important to accept who we are for who we are, and not just other people but ourselves especially. It’s unpleasant if other people hate us for who we are, but if we start hating ourselves for who we are? That is not healthy, and it’s not biblical either. Love others as you love yourself. In order to love others, we need to love ourselves; and in order to love ourselves, we need to be able to understand ourselves – to know who we are, why we are that way, act that way, don’t like light, don’t like loud noises, soft touches, or any other on a list of ‘don’t likes’.
Diagnosing your children, while some people might think it pompous and erroneous, is by no means wrong. I don’t know what I’d be doing right now if mom hadn’t diagnosed me Asperger’s while I was still a toddler – I know I wouldn’t be able to be happy with who I am. I’d think I needed to be normal, or needed to be like that person, act like those people – be ‘normal’. I still struggle with thinking that I need to be normal, to be like everyone else. But if I’m like everybody else, and everybody else is normal, and therefore, to avoid any un-normalcy, everybody is like everybody else – how on earth are we going to be our own persons? To be unique, to be one of a kind; diverse, multifaceted, and fascinating in our variations.
What is normal anyway? Normal is the ‘usual, typical, or expected state or condition’. Not many people in the world have AS – what if having AS was normal? Then, everyone in the world who didn’t have AS would be the odd ones out who had failed to ‘face their sinful nature’. Wow. Now there’s a thought.
Thank you!!!! I appreciated this defence on our behalf. Both of your comments were very touching.
Thank you for that 🙂
“Some people are so convinced that everything stems from sin they forget we live in a fallen world” I really like that one. A good summary of the problem I have with a lot of remarks people make.
Your both quite welcome, I’m glad I could help.
The T4 programme was a bad time, one of the main and most common aspects I’ve found with people on the spectrum is that of hyper and hypo sensitivity, which can be to all manner of things and may even be at a ‘sub clinical’ level,
Autism encompasses a good number of conditions and around 50% of the genetic influence has been found often in relation to things like PTEN and Fragile-X… Looking at something like PTEN which is related cell die back, children and adults with PTEN often have larger heads and significantly more brain tissue. After a good deal of research I’ve been left wondering. Maybe the ‘mutations’ involved in Autism are in some way as an evolutionary response to the environment and to diseases?
Reblogged this on Ravenambition's Blog and commented:
Well said
Thank you for the reblog!
Great question! Very well put.
My husband started long time ago to tell people, even strangers, that I am having problems with background noise. He has also said things like “it is too noisy for you here, go an and wait in the car” out of the blue e.g. if when we met with some friends for lunch and I thought I was just coping… apparently he didn’t think I was. When I said it was embarrassing and not other people’s business (especially not strangers), he said that if they don’t know I have a problem with noise, then they will misinterpret my behaviour and think that I am hostile or weird; the last thing that will occur to them is that I’m overloaded by noise if they don’t find the situation noisy. When I thought I as doing OK and looking totally normal, he said that I “looked like a deer in headlights” or “was freaking out”. He also said that I might think I am OK “now”, but that he is the one who has to deal with me the rest of the day…
So, while sometimes he might be wrong and I would actually have “passed”, I always do what he says now when he tells me the situation is too noisy for me. I do find it embarrassing if he tells me to leave in front of other people, but I also appreciate that he cares and is better at assessing overload than I am.
There’s a whole write up on labels:
http://www.asylumonline.net/no-more-psychiatric-labels/
There’s a progressive shift away from the disease model and labels onto more of a symptomatic one and disabilities etc… Still even if you look at the symptomatic a lot of the treatments are very poor if not worse than the condition itself. But there are moves in that area to find treatment approaches that don’t just involve doping people up.
A good example of this is the NICE guideline recommendations, which are what are used in the UK. They have a whole host of drugs etc… that should not be used to treat core symptoms of Autism/Asperger’s/ADHD etc… most approaches listed are drug free. Even for conditions like schizophrenia (which again has poor diagnostic validity) PRN is a recommended option for taking medication. This differs widely from the USA where there seems to be a growing trend in putting ‘bi-polar’ children on antipsychotics/neuroleptics. neuroleptic literally means ‘brain seize’
Also you’d have to take things like personality disorders into the equation too, though there’s been a good bit of research in that area done too, with the aims of redirecting children into more fruitful activities.
I think I like your husband’s explanation better than my husband’s, which is that I’m antisocial.
He’s actually starting saying that I’m autistic now, so that’s an improvement.
He also is much better at knowing when I’m getting overloaded in social situations and will often arrange for me to have some quiet time during long family gatherings, which is something he’s always done instinctively, even before I realized how much I needed it. Amazing how well our partners get to know us, isn’t it? 🙂
Yes:-)
I have been doing this with my daughter since I knew something was different at a very young age. I now when she is on overload. Even with a diagnosis, I’m still considered a helicopter mother for doing it.
Yeah my mom did that too. Now I am 31 and I don’t know how to do ANYTHING on my own. Because of my ‘diagnosis’ I was held back. Kept in a diaper till age 5. Lost custody of me for six years. Forbade me from leaving the house without her with me and literally holding my hand through high school. It took an abusive marriage to get me even close to on my own. Please tell me you’re not one of THOSE, one of those infantilising moms. PLEASE. If you are, consider the damage it does.
Have people told you that directly, or how did you get that information? I find it hard to assess what people actually think about me. I also find it hard to assess whether I am totally passing or obviously sticking out on some points, or somewhere in between.
I know (from second hand – various) that I have in the past beeing described as arrogant, weird, rude, very helpful, selfish, very considerate, quiet, super shy, assertive and “having no fear of what others think of me”, friendly, professional, sweet, “a fighter”, aggressive, “laughing of people behind their backs”, stupid, highly intelligent, highly reliable, unpredictable and volatile, having poor people skills, having great people skills, … an many other things. A wide range of different impressions I may make on different people.
I can generally tell if people have a positive or negative attitude to me because that shows in a lot of ways – and when it comes to positive attitudes, people often say that directly because they like to deliver good news:-) However, within the range of “negative” attitudes, it can be very hard to figure out what it comprises more precisely, what the cause of it is, and whether it is reasonable – like
– something I have done wrong and/or need to try to change, or
– personal likes/dislikes and projections (maybe I remind them of a problematic family member or someone they’ve had bad experiences with in the past or just a negative stereotype they have, and they project their negative reactions onto me), or
– a true conflict of interest (sometimes I can figure that out if it is obvious).
I wish each person I ever dealt with had their opinion about me written on their forehead (not literally..;-), rather than me having to guess and most likely, for 99% of the people around me not know how the person really sees me and if he/she is having a problem with me that I should actually address before it is too late.
In many cases, people have outright told me that I’m cold, aloof, shy, odd, etc. Once, a complete stranger told me that I didn’t seem like a very nice person (using those exact words!) after a 5 minute phone call. I was dumbfounded because I thought I was being polite and reasonable but apparently I was coming across as mean or something. But, like you, I’ve also had people tell me that I’m easy to be with, kind, sweet, smart, “on the ball”, etc. so it’s really a crap shoot. I often wonder if it has more to do with the other person’s willingness to see past our atypical exteriors than with how we come across objectively.
Also, I’ve noticed that when I’m nervous I give off the wrong body language to strangers (cold, defensive, hostile, suspicious) which causes them to react in kind toward me, even though I’m not actually feeling the emotions I’m projecting.
It would definitely be easier if people had their impressions of us out there for us to easily see so we could take steps to change them if possible.
Yes, and I think people are particular prone to projecting – negatively or positively – when there is a “gap”, a lack of expression they can understand, then they will fill it in with stereotypes or with their own moods or with their dreams or the personality of someone they have met earlier. I think I’m extremely prone to be in the receiving end of projections… sometimes it gives me a lot of undeserved extra goodwill or “expert status”, and at other times it sets me up as having all sorts of sinister motivations.
Maybe the guy on the phone was having a bad day, and that made you a bad day person…
Same here…
Also, when I’m nervous I may actually say some really stupid things, just throwing some answers in I have heard somewhere but which are totally unrelated to my opinion or how I feel. Usually because I at that point is so nervous that I don’t remember my opinions or can tell how I feel, so just responding mechanically with some phrases that sound like they are related to what is being said/asked. Well, that doesn’t happen often any more… I have learned to keep my mouth shut when I’m nervous, and I am also not nervous often any more. I used to be very nervous around groups of people.
I agree. One the big problems with people is that if they are not user-friendly open-access databases:-)
Yes, projecting into a gap sounds exactly like what happens.
And now that you mention it, I think I say irrelevant, annoyingly repetitive things when I’m nervous too, like restating the problem if I think the other person isn’t responding emphatically enough. In part this might be because I’m not reading their body language, which is probably saying “shut up already!” 🙂
“One the big problems with people is that if they are not user-friendly open-access databases”
😀
I am glad I am not the only one:-) (I didn’t think so)
Non-User-Friendly Open-Access Databases?
I used to think of them as hare-trigger poop bombs. and
avoided them accordingly.
I ostracized the entire human race when I was 11 or 12. Having anything to do with them was exhausting, stressful, painful. I regularly had to endure physical assaults from bullies on the bus, at school, etc .
Generally being everyone’s dog to kick. The adults turned a blind eye.
I didn’t want anything to do with them. My kindred spirits, my friends were the authors of the books in the public library.
Thanks so much for your blog, and for all the extremely enlightening comments.
It is interesting that people are not afraid to openly tell you their negative opinions about you.
I almost always only get such information from someone else, typically someone close to me who is feeling hurt on behalf of me by the negative comments and in a dilemma through some time about telling me or not, before deciding to tell me, usually to suggest that I change my behaviour towards those persons.
I’m unusually blunt so people may feel more comfortable being blunt in return? Or they’ve tried hinting and I’m not getting it, so maybe they resort to saying it straight out? Also, people tend to say “I can’t believe you just said that” to me a lot. Which is directly related to my lack of filter.
OK, that means you are VERY blunt 😀
Maybe a combination of the reasons you mention.
I am also known for being direct. So much that my husband and some others may sometimes censor me, like say in advance to not discuss this or that, or explain someone else’s reaction towards something I said, or warn in advance about a certain person’s manner as to prevent a conflict, because they know I’ll go right in the trap. I appreciate the guidance.
People say that to me a lot, too. Usually when I’m stressed because my brain-to-mouth filter is the first thing to go.
I get the sensing the positive and negative in other people. I thought I “figured” out who the wolves were in sheep’s clothing. My Husband finally deduced . . . NO I only have ‘WOLF’ radar. oh well. At least now I don’t give them the benefit of the doubt. If you hit wolf radar. i write them off.
So true. Story of our lives in this family.
I think an “overload” of passing is what led to my diagnosis this past summer… When I was reading this post, and some of the comments, I was struck that depending on the situation, the particular things I do to “pass” may be different, based on what is expected (or, what I **think** is expected) in that situation. For example, passing at work means one set of behaviors, but passing at home is a different set of things, and out shopping is yet a third set. I feel like I had been juggling the different sets for so long, without sufficient recovery time, that I lost track of them and things started to go downhill fast at home… which led to counseling, therapy, and my diagnosis. I think of the different “expected behaviors” sort of like the different “personas” that David Finch describes in The Journal of Best Practices, yet more subtle in many ways.
I think I, too, haven’t been doing as good a job of “passing” as I had thought… and I know that, since my diagnosis, both I and my wife have been able to be a **lot** more relaxed since we have an explanation for why things were happening the way they were.
I have concerns about disclosing my diagnosis at work, since my job is quite public. I have shared it with those for whom my quirky behavior can have the most negative consequence, and for the most part that has been a positive experience.
Thanks for another great, though-provoking post!
I know what you mean about having different roles for different places/people. I think everyone does to some degree, but for aspies it can be very exaggerated and perhaps more of a “performance” than it is for the average person. As I’ve started to be more myself, it’s become even more obvious to me when I’m doing something to pass, which is creating some unpleasant internal tensions. Huh. Perhaps that why I wrote this now.
It’s great that you’re feeling more relaxed at home since your diagnosis and that you’ve been able to share your diagnosis with some key people at work. Disclosure can be so tricky. It’s good to hear positive disclosure stories.
“As I’ve started to be more myself, it’s become even more obvious to me when I’m doing something to pass, which is creating some unpleasant internal tensions.”
I can definitely relate to this… as I’ve been able to stop wearing some of my various “masks” (from another comment – love the analogy), I’ve become more aware of how much it takes to really be “in the role” of passing. Having a better awareness of what is me, intrinsically, and what is part of passing, I’m finding that I have to make choices about things that have been automatic for me for years… and those choices aren’t as easy as I would’ve thought, given that outcomes from choosing not to wear the mask or play the role are far from certain. This is perhaps much easier with people or in situations that are new, and harder when in a group that I’ve been with for a while.
Disclosure is definitely a double-edged sword, and two things in my favor at work have been that there are only a few people in our work unit (seven) and that my supervisor (who works in a different building several miles away) has been open about challenges in her life, and very supportive of my self-discovery. There are definitely a few people in our work unit that could react very negatively, so I’ve been very cautious in sharing.
I saw, in another comment here, a theme about “all the weird kids” gravitating to us… and rather than adding another reply there, I wanted to echo that… I was always with a group of kids that teachers and parents might describe as misfits, so the Rudolph the Red-Nosed Reindeer analogy from another commenter was perfect!
I bet your supervisor’s attitude has a big impact on how your disclosure has been received. I admire people who are able to just be out to everyone, but I think personally I’m more like you in that I consider ahead of time how someone might react and then move accordingly. If people have a bias, it’s probably not worth subjecting ourselves to it just in the name of openness.
I, too, admire those who can just be out to everyone. Unfortunately, the biases that I know are present and my somewhat-public position (with expectations that don’t typically include “autistic”) mean that I will probably never be completely “out” at work, but it has been so refreshing that the few people I have shared my diagnosis with have been incredibly supportive. I am very fortunate that my supervisor’s attitude is reflective of the management culture as a whole where I work, because without that, I suspect I would be looking for yet another job someplace else! Weighing the pros and cons and choosing whether to try and pass in a given situation or environment is still new to me… my default is probably still to try and pass, but I think of the situations where I’ve dropped the charade, and it is clear that I’ve been able to enjoy myself more and, usually, to not cause so much stress for my wife or family!
I think that having a choice about whether (or not) to try and pass is actually quite a blessing. I can’t help but think about my daughter, who has Down syndrome, and the fact that she will probably never be able to “pass,” in spite of the fact that she does most things quite typically, because her facial appearance is different from “normal.” At least with my autism, other people (in spite of their biases) are not necessarily assuming I’m incapable of something before I even get a chance to try.
I don’t think of it as a narrative of how to pass everyday but more to create the least amount on tension in my life. I work remotely and virtually with my teams. I still have to interact but when people know that i am AS then i can help paint a different narrative. I am not being a bitch and obstinate I view things differently.
some get it some don’t, but in the last year, i know that the HR groups are more receptive to our tribe. Especially high functioning highly productive awesome people like our tribe.
Masks, yes. In my adult years, on Halloween I’d tell people I was masquerading as a normal person.
My son is six, PDD-NOS, and a social, sensory seeker. He loves people, loves to play. He doesn’t get the subtle social cues. He’s such a gentle, direct, fun guy. He can “pass” for a little while in certain situations. It’s very interesting how he will connect to other spectrum kids when we go to play places, parks, etc. They find each other. I want to do my best to give him the tools and confidence to be himself, and hopefully he won’t have to fight to “pass” and wear himself out.
I found all the other “weird” kids as a kid. I should write a post about it sometime because I was like a magnet for other kids who were outside the mainstream.
I think that teaching your son social and coping strategies that allow him to still be himself is a great way to help him conserve precious energy and build his confidence. It sounds like you’re doing a great job encouraging his outgoing, happy nature. 🙂
At first I was missing your point… because I was thinking, “It’s good to ‘pass’ when out in public.” After reading more, I took “passing” not to be so much in ‘casual situations’, but in recurring situations (work, school, family, friends).
Though this wasn’t an ASD moment, when I was 12, I had a step mother that I did not like. However, I had to do a quick favor for her (get out of the car and tell a worker something) and it was so much easier to just say, “My mom wants…” instead of “My step mom wants…”
Where you said, “But passing in the long-term–in life? That’s a myth,” I have to concur. It would be impossible… sort of like the claymation christmas tale of Rudolf the Red Nosed Reindeer. He kept trying to “pass” and it worked for awhile, but it has to be a dreadful thing to hide who you really are just so others will ‘accept’ you.
I have to agree with what you say about having to hide to be accepted; because if you’re hiding who you really are just to be accepted, are you really being accepted or are they just accepting the facade you’re projecting? And then when the facade slips and they see part of who you really are, it hurts us even more when they think that that behaviour is out of the ordinary when in fact it is quite natural and more comfortable for us – because it is who we really are. My mom has a phrase, ‘like or lump it’. She really lives by this when dealing with people – She’s not rude, or mean, she actually tends to come across as quiet and shy; someone who could be easily bullied, but as soon as you try to push you find she isn’t as soft as she seems. She’s still kind, but she’s not a rug to be walked on. And people either have to like it and become friends with who she really is, or they can lump it and not be friends. Either way, though when people do decide to ‘lump it’ they can hurt her, she is content with knowing everyone knows who she really is, and those who love her love her for being that person.
Yes, Rudolph with his fake nose falling off is a great analogy. I used to think I was pretty good at passing in casual situations but I’m realizing that I suck at even those small moments. Or maybe I just suck more at it now as I’m getting older and the elements of passing are becoming harder to pull off. 🙂
I love all your posts! Please keep them coming!
I actually found that before being diagnosed (at 32 years of age) I never doubted myself, or my behaviour in any situation.
I was just me being me, right?
Apparently I was wrong. . . . . . That was me being autistic!
I always thought I was just unique, and eccentric. If someone didn’t like me that was their problem, not mine.
Now that I have a diagnosis and my difference has a name, I am constantly getting advice from people about how I should do this or that differently . . . . . Because I must need someone to tell me how to be me!!!????
I would love to respond with: “When did my diagnosis become an excuse for your ignorance or lack of social skills?” – I am afraid that I have more tact than that! (Usually)
If you do annoy/offend me to the point where I do give a rude/arrogant response . . . . . . Then I think maybe you should review your behavior before you start to criticize mine.
Anyone becomes unpleasant – eventually – if you rub them the wrong way for long enough.
I’m not rude because I am autistic, I am rude because the situation required it and I am tired of “defending my diagnosis” to rude, arrogant thoughtless people.
When will they all go out and see a professional who can diagnose their “stupidity/ignorance”?
I’m not bitter or anything, just quite happy being me and being different.
I was happy to know I was autistic, but it would help me if the world around me, knew more about autism than – “oh they have poor social skills don’t they?”
I was happier to have a diagnosis for my dyslexia, as that has way more impact on most of the interactions that I have with the world at large. This was the life changing diagnosis that has helped me overcome some obstacles in my life.
Autism was just a new word for all the things that I always knew about myself anyway 🙂
“Autism was just a new word for all the things that I always knew about myself anyway”
What a great way of describing it! 🙂
sunnyjasper, thank you for writing that! It matches what is in me so closely it is like I wrote it.
Interesting insight. I share your conclusion : trying to pass as normal for autistics can not be the (exhausting) goal.
It was what inspired me for my first autism bitstrip comic, too. My son’s school does not want to single out the kids with autism, so they just talk about differences. But he can simply NOT hold it together all the time, and things always happen. And now, instead of autistic, the kids think he is ‘weird’ – how is this better ?? I also know how much effort even a ‘good day’ at school represents for him, so I am simply not that demanding at home. He can stim all he like (he’s a runner and jumper, hummer and singer).
Everyone has to find that out for themselves, obviously, and hopefully, parents also do not overwhelm especially their “high functioning” kids with the expectation to be “perfect functioning” and passing, indeed!, all the time. Yes, it helps to become more socially accepted but true friends should not mind your differences. I think if only they understood them better, it would be easier. It’s our society that has to become more accepting and accommodating for the invisible disabilities, mental health conditions and all. Just as we expect wheelchair access to public building, there should be access without having to pass as non-disabled for autistic people of all ages.Especially when more social integration can be a learning experience, that might not do away with any stims or completely avoid meltdowns, but it certainly can do a lot to overcome anxiety issues and stress.
“And now, instead of autistic, the kids think he is ‘weird’ – how is this better ?”
Most adults, especially those of us over 40, were never diagnosed, especially not as children. Was I weird? I’m guessing I was with my obsession over baseball cards, wearing the same shirt all the time, my windbreaker inside out, etc. I don’t see how being labeled by professionals would have made schooling a bit easier. In the end, your job is to groom a functioning member of society (whatever that will entail for your son). When you say “our society that has to become more accepting” I agree and I disagree.
If you’re talking about access to government, or government institutions and to a lesser extent to retail establishments as a customer – sure. If you think that employers should have to accommodate people that cannot function up to baseline standards for all employees, I’d have to differ. The thing with society is that we ALL give up some part of ourselves to be part of the whole. Those that prefer less intrusion into their lives usually find a way to be self sufficient and voluntarily disengage from the rat race as much as possible.
I can only partly agree to you, even in a corporate level. Companies are currently scanning the pool of potential autistic employees to see how they can exploit their particular approach to things in a way that is mutually beneficial. I think if it done the right way, both sides will still have to adapt and that is fine and definitively a positive development. Obviously, you will not put an autistic who doesn’t like talking to strangers in a front desk position ?
I fully agree that putting yourself into a working situation demands effort from anyone, but I wasn’t asking for understanding for completely inappropriate behaviours in the work place, rather to work on the stigmas that accompany certain diagnosis (but not, strangely enough, others). And my main concern is how kids like my son go through mainstream school.
The kids that are educated about disabilities of all kinds and are also USED to them from an early age, those will be allies and friends for grown ups later. Things have changed since you and me went to school and if you are talking ‘rat race’, well, no actually, I do not see my job is just “grooming him into a functioning member of society”… I want to do more than that.
suburp,
Your comment gave me a few new insights. If a person’s non typical behaviors are understood to be normal for him/her then others would be able to anticipate them, and accommodate them where feasible/reasonable. That is one reason why I embrace the ASD label, and have slowly been using it more (not as an excuse, but as an explanation for non typical things). There is one FB page that is for my neighborhood, and when the predictable FB drama started on one thread, I mentioned being an Aspie. The people that were getting a bit chippy stopped, and then said they understood my comments a little better in that light.
When you said, “I do not see my job is just “grooming him into a functioning member of society”… I want to do more than that.” I think I understand your points… but what I’m trying to convey is that we (the parents) prep the child, so that they can (hopefully) do the rest themselves. A tricky enough prospect in today’s world, but I’d think doubly tricky if a the emerging adult has difficulties in social settings.
“not as an excuse, but as an explanation for non typical things” – that is exactly what I am trying to convey to my son and he has, on occasions, started to explain his ASD to other kids too. but the other part is that, unfortunately, where you talk about prepping, I often wonder in what environment those kids grow up that area already (at 7/8 yo) are now using the words ‘retard’ or ‘fat’ as slurs. So while my son has to be extra good – coping, explaining, passing where possible – those kids get to be judgemental and downright nasty and no one is going to tell their parents they are not doing their job? when my son was teased (i won’t say bullying yet) from boys in his class recently, it so upset him (and they knew..) that he ended up hitting one in the head. the others got a talking to, he got a day of suspension (no tolerance on head strikes, although the other boy just laughed). And you know what I got ? an email with links to parenting courses.
I want to prep my child to be able to cope with some aggravation, without exploding. Autism or not. there will always be ‘something’ or ‘someone’. but in a setting like school, or later work, where an authority has the power to set the tone through policies and example.. yeah, i expect them to do their job to support him, too.
Especially, because while he is the one that gets loud and ‘weird’, there will be MANY other kids who do not have special needs but are maybe shy or insecure, and those same bullies will drive them into depression, body issues, eating disorders etc. I just believe as a society, we should be aiming for better than what is currently happening. where manners and a certain discipline were beaten into the kids in the past, we somehow failed to replace that with ‘explanations’ and ‘examples’ because many parents aren’t taking their roles as an educator all that serious any more. Just my personal observation and thoughts about that.
You know, I am also making this up as I go and our own experiences and perspectives vary, but it’s good talking/writing and reflecting on that to explore what matters most.. if you know what i mean.. =)
“I just believe as a society, we should be aiming for better than what is currently happening. where manners and a certain discipline were beaten into the kids in the past, we somehow failed to replace that with ‘explanations’ and ‘examples’ because many parents aren’t taking their roles as an educator all that serious any more”
One of my pet peeves currently. We need to somehow change the whole of society, because a lot of problems with bullying and intolerance have everything to do with the way our societies (I am talking Western Europe and Northern America here) are developing. I believe that our increased exposure to mass (and ‘social’) media has been leading to an increasing hostility towards people who are different. Kids are raised by tv and internet. There, they learn they have to be this-and-this way and perfect. It screws them up, royally.
We can try to be perfect, we can try to pass all we want, but we’ll slip up sometime. Education is better. People are going to have to (re-)learn that everyone’s different and not perfect, and learn how to accept that.
And it will trickle on. Every person who gets educated, will in their turn educate.
I am increasingly telling people about my ASD, just to make them aware. It’s better for me, but it will also help in the long run, I believe.
suburp,
I like your approach. Keeping a fair amount of humor mixed in helps (like I detected in your last sentence). 🙂
The way I see it (“it” being everything all rolled up into one) is that even when a person is equipped with all the newest answers (which seem to change at least once a decade), it isn’t always enough. There are so many variables, that seem to be ever changing, that a parent needs a fair measure of luck to go with the parenting skills. A parent can have it all under control one day and it slips out of their fingers the next.
Petra,
The very foundation of society is built on bullying. Thankfully what we have to live through today is nothing like the lesser developed countries and it doesn’t resemble things from the past in the slightest… especially the further back in time we go. I hate to be Mr. Negative here, but as long as children are not prevented from having more children, the cycle of under educated people, and the horrible things they’re capable of, will never be broken.
But we can at least try.
(I’m usually Ms. Negative myself 😉 it takes another Negative to get me to think positive thoughts)
A great book on this is Monoculture by F.S. Michaels. We live in a time where the Economic story prevails.
We homeschool because of these issues and don’t have tv channels and minimize internet. Our house is full of Autism, anxiety, High sensory needs and ADD. Homeschooling was hell for me the first year but then I switched to a facilitator who suited my personality ( I am an Aspie/ Autistic) and now I am able to do it well. There are weeks we just live and learn through chores, outdoors, and reading while other weeks we engage in the formal aspect of lessons. My kids are thriving and way more innocent than most of their peers…and they choose wisely in regards to friends. I have taught them that three good friends is more than enough . They have way less issues and bullying as opposed to when they were in school. I have zero interference from well meaning “professionals” of education who think they know what is best for my child. All in all it has been delightful (after the adjustment period:)
I actually do believe society is changing…even the fact that they are trying to get rid of reward night in schools and the government achievement tests ( I live in Canada) shows that there is a general awareness that the way we have always done it in the last few decades needs to change. It’s slow but it is happening. Also, I don’t know about in the States but in Canada there is a huge homeschooling movement…Not for religious reasons either (for the most part)…Instead many people are choosing this because they are seeing that schools cater to a minority style of learning and a majority for socializing. For the most part, schools are for those who are socially minded but also very respectful and willing to conform. Do we really want to raise children who do not think outside the box or have questions? More and more, parents are starting to see that it is a lesser form of the Hunger Games environment (where only those who can compete and win get the rewards even if other children are trying as best as they can.) I am hopeful. One person at a time. One child at a time. One family’s decisions at a time:)
I do agree that there seems to be some change, but I feel that this is more on an individual level and that may not lead to improvement for the whole.
Many people think it should be done better and those who are able to (financially or otherwise) try to change their own lives for the better. But if they all ‘retreat’, the rest will become less tolerant of diversity, will continue to spiral towards what we now think is not so good. You don’t watch tv (nor do I), but that doesn’t mean tv isn’t getting stupider in the meanwhile. More homeschooling may mean the schools will change, but it may also create groups of people that no longer interact very much and grow more apart. (actually, homeschooling is not possible in the Netherlands, where I live, but I do believe parents can start a school together)
I agree with your “One person at a time. One child at a time. One family’s decisions at a time.”, but it can also increase the gaps and exacerbate certain problems.
So, we’re kind of going off topic here 🙂
I really don’t get the whole “he’s just different” thing when it comes to explaining an autistic kid to his peers and your example of other kids deciding your son is weird is a perfect example of how this can backfire. Autistic is nothing to be ashamed of. If he had a physical limitation and used a wheelchair, I’m sure the teachers would tell the other kids the name of his condition as part of the explanation (assuming it was okay with you). Ack! This is just making me mad now.
But yes, access should extend to allowing atypical movement and body language for those of us whose bodies are happily atypical.
Exactly. It’s true that children want to be like like all the others and want to be with others that are like them, especially in the school years… But i believe that is learned behaviour. If you put babies together, some can have stripes or missing limps or whatever, and there will be exploration of the differences, but no rejection!
I am not asking for complete adaptation of the school’s normal operation to the needs of my autistic child, just, you know, education, understanding and a bit of support here and there. Like it is done for kids with visible disabilities…
I just think our society should evolve to that.
Yes, yes, yes. 🙂
This post is very interesting to me because I have spent my whole life “passing” or trying to be normal. It has exhausted me to the point of being ill and having to take years off work and study. I don’t know yet if I have aspergers. My psych told me he thinks I could and is sending me to be tested. I’m being treated for ADHD and have managed to learn a lot about myself through honest conversations and taking concerta which helped me see what my biggest difficulties are (not fix them, just illuminate them). I gave the list to the doctor and thats what made him say “autism”.
I first thought it was a crazy idea, but the more I learn the more it makes sense. But i don’t want to get ahead of myself. It might not be. I read your book in the days after the appointment and have been reading everything I can get my hands on. It feels a bit like finding a mirror for the first time.
I do know that i waste huge amounts of energy trying to fit in and get things right. The chapter about being kind to one’s self was very moving. I am determined to let go of the masks I use but hardly know where to start. I’ve been faking it as long as I can remember, and only becoming aware of what I do that is “different” now. I want to stop trying so hard its detrimental to my health, but don’t want to be rude.
I apologise for how long this is getting, but please can I give an example and can anyone say if this sounds aspergersish? Its stuff that always happens but I try not to do, and frankly didn’t know might be unusual:
On a bus going home from the library this week there were two women with children. One child was drinking redbull and the smell was awful and powerful. The women were talking loudly and a baby was crying. It was completely overwhelming. I had to open the window to cope with the smell, and the noise was making me very tense and fidgety – twisting my fingers together and tapping my hands repeatedly on my legs. (Fidgeting sort of helps balance me i think, but I know it annoys people so tend to try not to do it). It took hours to relax properly afterwards. I think it was worse because of having been in the library already.
A couple of evenings ago all the sounds of dinner time got too much and I had to go away. My boyfriend found me crouched in the corner of the dark kitchen crying, rocking, and with my fists pressed to my ears. I managed to calm down but couldn’t join in any conversation the rest of the evening. Ok, so that doesn’t sound so normal for a 30 year old when written down.
Finally, please could someone explain what “stimming? is? I keep seeing the word but can’t find out what it is.
Welcome! It’s great to hear that you’re finding the book useful and more importantly that you feel like you’re finding an explanation for your differences. It’s interesting that medication for your ADHD has helped you identify difficulties are likely autism related.
What you describe on the bus sounds very much like sensory overload. Most autistic people have sensory sensitivities of some sort which just means that we have unusually sensitive reactions to sounds, smells, touch, taste, light, etc. It’s very common to stim (stim/stimming is just another word for fidgeting) more as a way to calm ourselves when we’re overloaded, which it sounds like you were doing. It’s also very common to go into a period of withdrawal/shutdown or a meltdown after experiencing sensory overload. One thing I’ve found that helps is learning to recognize sooner when I’m getting overloaded and leave the situation earlier, before I get completely overloaded and need hours to recover. Or in a situation where you can’t leave, like on the bus, wearing headphones to block out the sound or having a scarf scented with something pleasing that you can cover your nose and mouth with to block out unpleasant smells can help. Still, there are times when overload is unavoidable and the best we can do is be kind to ourselves as we recover.
There’s a bit more detailed explanation of stimming here that you might find helpful: https://musingsofanaspie.com/2013/01/03/the-high-cost-of-self-censoring-or-why-stimming-is-a-good-thing/
Thank you very much for your reply (that doesn’t make me feel like an alien) and for the information. I always was a fidget and that contributed to the ADHD diagnosis. Its only recently that I’m realising that when I do it is often related to how I feel, and that the actions often help me feel better. I am very bad at telling what I feel and what I need so its not surprising I couldn’t explain this to the doctors before.
The ADHD medication has been fascinating to me. I have learned a lot from taking it and am learning a lot now in the process of reducing and stopping it. I have always had trouble with communication but when I was told I had ADHD I assumed it was simply missing chunks of the conversation. The concerta helps me to follow the words, and that allowed me to discover there was a huge amount of information still missing. I have studied social skills and non-verbal communication a lot in the last year, but even with the information and the drug I cannot see it. I wrote down a list of my main difficulties, which are mostly social, with a view to fixing them for the doctor to see. That list is what made him say Aspergers.
I could write several essays on the effect of concerta, what I’ve learned through taking it combined with research and honest friends, and how I feel some of concerta’s effects are detrimental to me. But I don’t think this is the place! I am keeping notes on the process of stopping the medication and perhaps there will be something useful I can do with the information one day. There is little to no information about the effects of concerta on fatigue in patients who do have ADHD symptoms. I am learning now that there is a lot of cross over in symptoms of ADHD and aspergers so this could be useful information to several people.
Oh, based on what you’ve said here, you might also want to read more about Alexithymia, which is a general difficulty in sensing or describing feelings. I was blown away by it when I first discovered what it is and how much it affects me. A lot of autistic people are also alexithymic but many are not.
If you end up publishing something on the effects of Concerta and going off it, please send me a link. I haven’t tried any meds, but I’m interested in people’s experiences with them. And yes, there is a lot of crossover between ADHD and asperger’s symptoms, often so much so that it’s hard to differentiate between the two intially.
I would love to hear your experiences with medication as well! I’m about to start taking Wellbutrin XR (time released) because I noticed my symptoms getting worse when I tried to quit smoking. So I really am curious about other people’s experiences with dopamine or noradrenaline reuptake inhibitors, especially if they might be on the spectrum (since we seem to respond differently to a lot of medication).
Oh the smell of Redbull! It’s AWFUL isn’t it? I always try to stay away from people who are drinking it, at least a couple of yards.
On stimming: a couple of other autistic bloggers and myself have created a website with more information about stimming, because we felt the information available was either prejudiced (“stimming is a horrible habit that will cause you to get bullied and everyone will hate you for doing it”, which is simply not true), or not exhaustive enough (only concentrating on rocking and flapping, two of the more obvious ones). Because I’d only thought of stimming as rocking back and forth, I honestly thought it was one of the few areas where I didn’t “score” on the autism spectrum. But it can be any kind of behaviour that helps you cope with sensory or emotional overload.
http://www.what-is-stimming.org
Hope it helps!
Thank you very much. This very interesting because it looks like something I do, but didn’t realise what the word meant. I’ve had a quick look at the website and will send it to my kindle to read properly.
I would tentatively say that I use knitting in that way. I am fascinated by every aspect of knitting, but the basic easy projects get me through social encounters, stressful waiting rooms, busses, and if I’m annoying someone with fidgeting I can stop if I grab my knitting instead. I also feel pretty weird and out of sorts if I don’t knit in a day.
I once spent a two hour flight sitting next to a guy who’d spilled Red Bull and vodka on his pants. Like, all over himself.
Thank you for adding the link here!
It’s just something that I think deserves more recognition. Because I’m not the only blogger who read the stereotypical descriptions of stereotypies (ha!) and thought to myself “Well, I’m not like that at all.”
Very true. No matter how much I have tried to ‘be’ normal, for as long as I can remember, at some point someone will say ‘you know, you’re a bit of a strange one’. Or indeed, cold, bitch, frigid, antisocial, arrogant, uninterested, egotistical, or a whole bunch of other slurs. Having learned to pass is useful, but it becomes very difficult to stop passing. People don’t believe you are autistic, because you pass so well. And then you still get the antisocial/cold/uninterested label when you ‘slip up’, because they don’t realize.
It’s quite exhausting and I too have become slightly more relaxed about things since my diagnosis. But it’s very difficult to stop passing, because that’s the way I spent most of my life. All my social skills, my entire personality has been formed while passing. It’ll take a while to get rid of that, and only try to pass when I want to.
It *is* difficult to stop passing because it’s such an ingrained second nature thing to do and because there’s social pressure to continue doing it. But I’ve realized that I’m not as good at passing as I’d fooled myself into thinking so why the hell am I expending all this energy to only half-fool people? Maybe I’m just getting old and tired. 😉
I really relate to this. I’ve been trying to pass my whole life with various success. In childhood or adolescence-no success. In college- minimal success. Now as a stay at home mom of four- pretty good. But it’s only because I’ve identified situations where I don’t do well and avoid them (parties, formal get togethers). I do well in small groups of people I know well ( for a short time) or one on one with people I’m really close to. It is a lot of effort though to try to pass in those uncomfortable situations. And I have this feeling like I am not “me”. I can feel when I’m me and when I’m not. One writer referred to as “masking” and I definitely can tell when I have my mask on and when I don’t.
Masking is a good analogy. I think my primary mask is simply being quiet because I pass much better when I talk less. 🙂
There’s a lot to be said for not only identifying the situations we don’t do well in, but also for being okay with avoiding them. I felt guilty for a long time that I was avoiding things but you sound pretty okay with it and that’s awesome.
Yes. My life improved thousand-fold when I stopped trying to be what I thought I “should” be and started to accept the person I really was-and then I realized hey I like this chick 😉 now when I give in to the “should” voice I feel bad after but not for “failing” but rather because I went against my nature.
I can’t work out if uni has made my ability to pass better or worse, to be honest, but I certainly don’t feel like I *have* to pass *quite* so much here. I definitely flap a lot more, my friend calls it “Georgiasplosion” and I’m never going to get tired of the fact that that’s actually a word she genuinely thought up in her head 😛
I’m quite open about my diagnosis, but I tend to only mention it if it comes up in conversation, so there are still a fair few people that don’t know; having said that, most people see the flapping and the tiptoeing and jumping at loud noises and being overwhelmed in crowded rooms (and, of course, my sliiiiiiight obsession with Doctor Who… :P) so they must know there’s something different about me, even if they don’t know exactly what to call it. I’ve also found that these people (as well as those that do know about my Asperger’s diagnosis) are generally really supportive and helpful and I’m really lucky to be surrounded by such a friendly bunch of people. 🙂
This makes me very happy. I think of all places, a university setting might be one of the more accepting because there is often a higher level of awareness of diversity, social justice issues, etc (of course not always, depending on the university). Also, it sounds like you’ve been open from the start with people at uni, maybe? I think that could make a difference, versus disclosing to people who have known you for a long time, which is maybe what a lot of people who have commented here are struggling with. So, hmmmm, is that the case? Because now I’m curious. 🙂
Yeah, I’ve tried to be open about it. At the very least, the other lawyers have known since Day 1. It’s also worth knowing that after my place was confirmed I went looking for people on Tumblr, so some people “met” me that way before real life, and I talk about autism/neurodiversity quite a bit on there.
I also feel like I don’t have to hide here, so even where I haven’t had the chance to expressly tell people I’m autistic, they know I’m not very good with people, I tiptoe, I flap my hands when I’m happy, I repeat words (*cough* sorry *cough*), given half the chance I’ll monologue about Doctor Who or assorted bands, I don’t like crowds and lots of noise and scheduling crises, it’s November next week and I’m still moaning about being hot all the time – oh, and did I mention Doctor Who? 😉 What I’m trying to say is, most people who don’t know I’m autistic basically DO know I’m autistic, they just might not know exactly what to call it.
It’s cool that most people simply accept you as you are (or at least have come to expect you to be as you are). 🙂
Thanks for this article! I often feel like I’ve given up other valuable skills and interests, like an innate musical ability, spending my energy trying to pass & understand neurotypicals. It’s had it’s benefits, but that lack of trueness to myself while still being seen as “cold, aloof, weird, geeky, standoffish, awkward or selfish.” REALLY hurts. Fitting in is overrated being kind to myself in being very choosy with my time and energy now.
This is exactly how I’m feeling these days. Like, “why bother?” when my energy could be put to better uses. Being kind to ourselves should be near the very top of the list when it comes to how we use our energy. 🙂
I don’t know. I seem to pass pretty well, so well that my mental health professionals don’t believe I have autism anymore. They even reacted in disbelief when I brought up my history and seemed to believe that I was just bringing it up because I was depressed and that in reality if the depression were taken care of the autism complaints would go away.
I think that reaction might say more about the ignorance of your doctors than how well you pass. 😦
I had always tried to pass, long before I knew I was autistic. I tried to be the extroverted jock in high school, and then again at work. In trying to pass as “normal,” I ended up failing at everything. I couldn’t be social and I didn’t work on my technical skills.
When someone told me, “Why don’t you find an opportunity to tell people that you can’t handle loud noises?” and “Why don’t you let people know you’re not going to talk because you’re trying to focus on work?” It was an epiphany. You could do that?! You could do that. While not all of my co-workers are autistic, I started noticing how they did similar things without directly saying out loud who they were.People wouldn’t say outright that they didn’t drink, but they would order apple juice instead of beer or declare themselves the “designated driver.” Do that enough times, and others seem to be more or less accepting of your quirks.
Since I diagnosed myself, I’ve started humming more. 😀 I’m a lot more comfortable with being quiet and more forgiving of myself when I can’t keep up with 5 different people in a group conversation, because I just can’t lol
Yes! I was also blown away by the idea that I could just say one specific thing and ask people to respect that, rather than having to go into a whole big explanation. I started trying it in my last year of university (two years ago) and it worked really well. Like in group work I’d declare up front that I’m not good at speaking in front of people (so don’t ask me to give the presentation) but I’m good at background research or number crunching. That way I wouldn’t get stuck doing some task that I’d be horrible at and disappoint the group. It worked surprisingly well.
See I think I pass really well. REALLY well, and it’s to my absolute detriment because people expect more and more of me. They expect me to be more social than I can (happily) handle. Expect me to take on roles that terrify me. Some days I really hate passing.
It’s really exhausting. 😦
Reblogged this on The Cheetah-Chottah Press.
Thank you for the reblog! 🙂
You are very welcome 🙂
Thank you so much for writing this. It explained what my daughter goes through and gave so much insight@
Thank you for letting me know it was helpful. 🙂
yes. yes. yes. I’ve needed to process this before commenting. I am a passer. I was only diagnosed last year. I have had each and every label there is. Cold. Gruff. Tough. Uncaring. Bitch. Too Pointed. Blunt. Not Understanding. Unsympathetic. no Finesse. Utter lack of empathy. etc etc etc.
I received these glorious feed backs both at home (my mother and sister) and through work co-workers & feed backs and reviews from bosses.
One of my ways to fit in, is mirroring people. Their pass times, energies. I know a lot of information so I can use that to try to make a connection. I have had people indicate how “fake” I was when I “kissed up” to certain people. And I truly didn’t know what then meant until we received this new lens to view my life. The way I relate evidently makes me stand out like a sore thumb.
When we disclosed to some immediate family in the burden started to be lifted and shifted. My comfort with being diagnosed has let me start to be who I am. I know I am wired differently than an NT. I know that my bluntness makes people really uncomfortable. I am learning to start a sentence with “I know this may be blunt but . . .” It’s weird that I can write that communication process into my subroutine. I still don’t understand why I have to care about others feelings but oh well. If that lead in gets my desired result I think I can keep the subroutine in process.
That being said, I understand that my break downs and freak outs occur when I am being mis-understood or not taking care of myself. I still really need to learn how to advocate for my physical & mental needs. I don’t say “no” well. How the pressures affect me is different than an NT. They have a bad day and go home grumpy and then start fresh the next day. When I have a bad day I start to not function. day 2 is functioning at 85%, then day 3 is even less functional down more% until I have a melt down.
I so appreciate the forum here to discuss these challenges. So many me too answers from all of us. We know we are unique, but it isn’t until someone says out loud “did you ever notice that . . .” that it dawns that others don’t see /feel things they way we do.
I am more comfortable a year in to embrace my Aspie Autistic diagnosis. Yes. I am not an NT!!! That means I think and process things differently. Yes. that makes NT’s uncomfortable. I am an Aspie. I am on the spectrum. No, I am not mean because it doesn’t occur to me that you have a different opinion. Yes. I will say what’s on my mind. I am me.
What a terrific comment! I’m grinning at that last paragraph especially.
I feel like a lot of us are in a transition period, where we’re sort of deciding which parts of our masks to shed and which serve us well. Some elements of passing are expedient and as you said, simply adding a new bit of code to a process doesn’t cost much and gets results. Those are the kinds of things that I wish I could learn more about. Reading your comment and all of the other little tricks that people share here feels invaluable.
Hi, long time lurker here!
I’ve been wanting to comment on your blog for awhile now, and I guess this post made me finally get up the courage to do so – I’m sure you understand 🙂 First off, thank you for writing this post. Thank you for writing this entire blog. It was after, in January, stumbling upon your post about talking on the phone that I started reading your whole blog (literally), and any information I could find about Asperger’s. The more I read, the more I realized that I was reading about myself and my boyfriend. We concluded that we are both autistic and will (when we’re ready) seek out a diagnosis. So, thank you so much for being a part of changing our lives for the better!
This post has got me really thinking about passing, and specifically the huge part it’s played in my identity. I spent a massive chunk of my 23 years doing everything I could to pass, to the point that I wasn’t even aware I was doing it. I think this is the worst thing about passing; it becomes so ingrained that the person has no choice in it at all, and begins to think that the mask (love that analogy, too) is actually them. In these past months of learning about autism, I’ve started finding out what I really think and who I really am, but I still have a long way to go. There are so many things I’ve said, done, and felt that I thought were real but were probably a product of leaving the mask on so long that it became my face.
Still, despite my extreme efforts to pass, it didn’t work. People still didn’t like me, and they still thought I was “weird”. I’ve been told I’m: distant, weird, cold, a bitch, unfeeling, mean, rude, shy, a pushover, stupid, thoughtless, not nice, uncaring, disengaged, selfish, self-centered, egotistical, and more that I’m probably forgetting. Now I’m reaching the point you are, musings, where I figure it’s just not worth the effort (and I really don’t think it has anything to do with age; I’m young and feel the same way). Why waste effort that could be spent doing actually useful things (like drawing or reading about deep sea life) on impressing people when it’s not actually going to work. I use a cost-benefit approach to everything, and the benefits of passing really don’t outweigh the costs for me. Despite that, I still find myself passing when I don’t really want to, and I end up saying and doing things that aren’t me. It’s going to take awhile to sort through things and find out what’s what. One of the biggest challenges here is that I’m still subjected to people’s past views of me. It’s very difficult to convince people who have known me my whole life that they don’t know me as well as they think. Even though they know I’m autistic, they don’t want to let go of the history. So, It’s easier to just keep passing. But I don’t want to do that. I want passing to be something I can control – a skill to use only when I want to.
Wow, I’ve kind of written an essay here. The “passing” part of me wants to say sorry for that, even though I know long comments are welcome here.
Thank you again for this post, and for your blog!
N, I wish there was a thumbs up option here. 🙂
Wow, thank you for delurking and letting me know your experience. I’m honored to be a part of your journey. And you’re right, long comments are welcome and encouraged! 🙂
I know exactly what you mean by passing becoming second nature and obscuring the person beneath. It’s so hard to undo years of habit and instinct. And you got exactly what I meant about trying so hard to pass and only halfway making it, which creates a whole other problem.
Perhaps with regard to how others respond to you, it may help to give it some time. You might find in the end that some people will get used to the “new” you and others might drift away (unfortunately) because they can’t make the adjustment and others will just keep on bumping along like nothing has changed. This whole “suddenly being autistic” (which we’re not but it can appear that way) can take time for people to adjust to, especially those who’ve known us a long time.
Thank you for replying!
Yes, I find myself wishing I could undo the passing. I know it’s irrational, but that’s how I feel. In trying to pass, I encouraged people to have expectations of me that I really couldn’t live up to. And then when the passing slipped up (as it always does eventually), they were inevitably disappointed and I had to deal with it. Then they just thought I was being mean/rude/cold/etc. I think honesty is nicer to ourselves and to others.
I think that’s probably a good idea – to give it some time. Thanks. I guess I should keep in mind that other people haven’t been spending nearly as much time as I have researching autism, and just don’t know that much about it.
I think I’ll keep commenting 🙂
“In trying to pass, I encouraged people to have expectations of me that I really couldn’t live up to. And then when the passing slipped up (as it always does eventually), they were inevitably disappointed and I had to deal with it.”
This. I have experienced that so many times. I guess it’ll take a while to get rid of trying to pass, though, it’s so ingrained. Honesty is much better, but it’s difficult to get rid of old habits.
I definitely agree that honesty is better, and I try to be honest about myself as much as possible. Sometimes though, because it’s so habitual, I do instinctively do something to pass in an awkward moment. Like if I’m saying no to a social thing with family, I’ll instinctively blurt out that its not about anything they do, although in reality there are some very specific things they could (probably easily) change to make the visit more comfortable for me. I find it so hard to tell if I’ve hurt someone’s feelings (or am about to), that I’ll act overly accomodating and nice. Which doesn’t get me anywhere, and I still have the original problem lol.
We’ll get there someday, I think, it’ll just take some work 🙂
It’s funny. I don’t know if I’m actually passing sometimes. I think that’s the hardest part — not knowing if my attempts to keep myself together are even helping me. My body often knows before my brain does that I’m feeling anxious, so my movements scream that I’m having trouble (e.g., feeling shaky or not breathing properly; not feeling there) before I can say it aloud or hide my reaction.
I walk the line between outright saying I have GAD and I’m an Aspergirl or just describing my traits in non-threatening terms. For instance, “So when I get like _______, I tend to ____. Please do not be alarmed — [this is my normal; you’re just not used to experiencing such things.]
I like your approach to disclosure – keeping it fluid and trying to fit the situation sounds very practical. My body often betrays me too no matter how hard I try to keep it “under control”.
This post is kinda old, but…
I’m not sure if I’m all that “severe” by clinical standards but I really don’t have trouble passing. Even though I was diagnosed with Asperger’s very young, I found that when I want to learn I’m pretty quick at picking up those domains of behavior that “most” autistics find difficult. I’m not saying I learned it all overnight or anything, yeah I had a lot of stops and starts but I’ve definitely made cumulative progress which to me at least is way more satisfying than just having been born NT would have been. Honestly once I stopped stimming in public, maybe around 14 y/o nobody seemed to notice that there was anything off about me at all. I don’t get burnout anymore from social interaction, never really had eye contact issues AFAICT, and although I was always a curious person my pool of interests has umbrellaed fantastically. Conversation is cake, no problems making friends or having sexual liaisons to use the polite term. I remember being made fun of and excluded from a lot of things when I was young because of ASD traits, but I’ve changed so much that nowadays I honestly can’t imagine doing the things that caused that treatment. I still stim when nobody is around, not to mention the occasional anxiety spell but outwardly I’ve never had real cause for concern that I come off as different.
I don’t mean to come off like a blowhard who’s full of himself, it’s not my intention to boast or put anybody else down but I did want to share another side to the Asperger’s experience.
I loved spending time with dorks, geeks, and nerds. I have no idea if any of them had autism (aside from one dude that officially had Asperger’s and he made the most sense to me of all the kids I knew, and I was planning to teach him the tricks I learned about blending in), but the geeks were more understanding. They got all the weird obsessions with toys and games, they got the socially unacceptable labels, and they welcomed their fellow freaks. Who cared if you were socially awkward in a crowd of socially awkwards? So long as you knew when to route for Superman over Captain America, you’re good.
Some situations, I can pass with flying colors. Others… people know there’s something off about me, and they make it their goal to “correct” me and that just causes so much more trouble. Because they don’t settle for “this is just how I am”, no, they say I’m “just inexperienced and need more experience so you won’t be so weird”. Yeah. Right. Tell that to the kid refusing to eat PB&J because he has peanut allergies.
Well, at school, the people I’m around think I “have a few screws loose” too. I was diagnosed with Asperger’s and DD-NOS (a type of depressive disorder) back in March and when I studied it more, a lot of it sounded exactly like me. Yeah, my family tries to “correct” me and it never does any good. Another thing… My grandpa ALWAYS has to say something cocky to me every time I talk to him. I give him the “What’s your problem” look. And at times, I’m blunt to him too. And, musingsofanaspie, like you, sometimes I have that “lack of filter”. I say exactly what I think and I don’t realize it hurts anyone. At times, I even have to filter what I say, lol. 😛 Most of the time, NT’s think I’m too eccentric and even my grandpa thinks I’m “snobbish”. He told me the reason I have no friends is because I act “stand-offish” and that I’m basically a “snob”. That’s where he’s wrong. It seems like he’s making me out to be the “bad guy”. I hate it when he does that. 😦 What do you think about it?
I have war regularly with my grandmother too. Mostly about how I dress like a guy and don’t show off what I’ve got, but a good bit about being too blunt. I have very vivid memories of her telling me how I’d never marry “if you keep acting like that” and I was going to die alone with everybody hating me, but she denies the latter now (I’m heavily suspecting early stages of dementia, her memory is terrible not just with cruel things she says to me, and there are a few other signs).
What exactly is it about you that gets labeled snobbish? I’ve gotten that label because I don’t have patience for drug addicts, people with limited vocabularies (every other word is the same curse word), or people that insult my husband or family. Honestly, usually the ones who call me a snob are the ones who fall short of my standards because of aspects of themselves they hate in the first place and realize they shouldn’t be doing.
I was diagnosed with Asperger’s at age 38. (I’m 40 now.) Long story short, I’m a graduate – level mental health professional who first encountered the Asperger’s dx in an undergraduate Abnormal Psychology class quite literally the day after the DSM-IV was released. My entire psychological career has included the Asperger’s label. When I read it in the new DSM-IV that fateful day, it felt like coming home. That was me, clear as day. I hesitated to pursue a dx then for fear this was “medical student syndrome” where you think you have every new condition you read about. But no…. Years later, after a stint in the Army, getting married, and having a child, I returned to the diagnostic issue.
Even longer story short, my initial eval did not go well. Partly because my evaluator was seriously focused on his own research (in fact, he was on the DSM-5 task force that removed Asperger’s as a separate dx), but I daresay in large part because I was masking. A LOT.
I grew up as the oldest child in a family where my mother was in the spotlight iften, breaking new ground for women in her religious tradition. I was “on display” a lot, and both myself and my brother knew we had to behave and not do anything that would make our mother look bad. I learned the rules very well. Smile, nod, shake hands, spout the usual script to people I didn’t know but who had heard of me through my mother or publicity, and then try to escape as fast as I could in a socially acceptable way. I often joined my father in reading a book in the car (he’s self-described as an Aspie as well but never formally diagnosed).
I mask. A lot. I went to college and studied people with self-made flashcards of body language so I could fit in. I majored in psychology to learn how people think, what motivates them. How to understand and relate and interact with them. It was like studying a fascinating but totally alien race.
I joined the Army and thrived on the routines, the concrete and consistent expectations. And then I got injured. And as a newlywed to another soldier, I found myself navigating the military medical board system. I had to mask even more then.
Anyway, that was about 17 years ago or so. I revisited the Asperger’s dx with my psychiatrist in 2013. By then I’d gone on to receive a Master’s degree in Counseling Psychology, but not to be a therapist (I don’t have the patience for that) – my interest is in career and vocational psychology which at present is a division of counseling. And for the last 7 years I’ve been department head for Rehabilitation of a large nonprofit (600+ employees), working with clients from Vocational Rehabilitation and other agencies who have disabilities, helping them to identify accommodations and learn skills needed to get them back into the workforce. I love my job. I thought I had to continue that strong, “got it together” image . So the masking continued.
But it’s different now. When I got my Asperger’s dx, my psychiatrist and I reviewed my old dx of ADHD and Bipolar II. Peer-to-peer, we investigated every aspect and determined that the Bipolar was non-existent – my triggers were predictable and reactive, much more in line with an Autistic reaction than a Bipolar neurochemical issue. The ADHD was also revised to ADHD, inattentive type when I pointed out that my observations of the “hyperactivity” were actually showing it was stimming behavior instead. I do still have a math learning disability though….Asperger’s doesn’t eliminate that one. 🙂
It’s been a true journey of self-identified formation. I hadn’t made it too far in that before I was diagnosed with a genetic connective tissue disorder (Ehlers-Danlos Syndrome, which has some surprisingly high correlations to Asperger’s/Autism). It’s now affecting my entire body – cardiac, musculoskeletal, GI, circulatory, skin, etc. It also causes body – wide chronic pain. I now have joint braces for almost every joint and walk with high-end knee braces (those good old Army injuries that sent me home and never truly healed….).
I used to mask a lot, that Asperger’s. I can’t mask visible braces or pain. People notice I’m different now and have different needs. Maybe this is cheating or maybe it’s the mental “crutch” I needed, but since my health has started going downhill, I’m taking advantage of that to slowly learn how to stop masking the Asperger’s at the same time. Honestly, I don’t have the energy or strength most days to do it as well as I thought I did before, anyway.
My mother is confused. She is in denial over the Asperger’s, but couldn’t ignore the braces when I saw her last month. I masked a little for my grandfather’s sake (we had all gathered for my grandmother’s funeral) but not with anyone else. Mom looked at me like she didn’t know where her “perfect daughter” had gone. I told her that person never existed. I don’t think she believed me. 😦
I masked too much and too well. Those who wanted to believe the mask, did so. My school friends didn’t. They accepted me for who I was. My best friend and I have been best friends since we were 4 years old, and I’m still in touch with other elementary school friends, all the way through college.
I’m unmasking at work, too. One of the nice things about working in the disability field is how accepting most of my co-workers are. Many know I have Asperger’s. Many know about how involved my EDS is. Most don’t care. They treat me just as they always have, as I’ve shown myself to be a capable professional regardless of whatever challenge is put in front of me. I get questions sometimes, as one of our employees on site is a significantly affected individual with HFA and some don’t get the concept of the spectrum. But it’s okay. Teachable moments. 🙂
I still mask. Not as much though. My husband is learning how to help me take them off and manage my sensory issues in productive ways. I honestly don’t know who I am though. I’ve masked for so long, I’m like Julia Roberts in “Runaway Bride,” where she doesn’t know how she likes her eggs.
In the last two years, my new personal identity as a person with both Asperger’s and chronic physical illnesses has really shaken me to my core. I’m trying to rebuild now, without the masks (unless absolutely necessary). At the end of the day though, I just want to be able to tell someone how *I* like my eggs.
I had something I want to write, but you are a tough act to follow, ma’am. Wow. Can you write a book or something? Your journey is fascinating.
Thanks for sharing your story. I think I understand what you mean about masking too well and those around me being unwilling to believe it. Funny you would mention that movie–as ridiculous a rom-com stereotype as it seems, that character and her identity issues always resonated with me. It’s one of my happy junk food movies. 🙂
OK, so I came across this year-old post when I was puzzling out what, for me, is the Big Question: What exactly do NTs think of the autism traits? Do they see this as part of their experience, too? Are we all on a continuum? Basically — where is the line drawn and does it matter?
I’m need to understand this before I can decide how to deal with disclosure and self-acceptance. My next big question after this is what I owe society (what “being nice” really means and how much energy I have to devote to it) and what I owe myself.
I think we aspies feel a strong and severe disconnect from “normal” people. I think we feel rejected by them from an early age. I recently realized I have been resenting them since I was in grade school (I’m in my ’30s now).
I think the common view among aspies is that we are wired differently. The “disorder” comes from placing the benchmark of “normal” in someone else’s hands. If someone else defines “normal” and leaves us out, then yeah, we’re not going to be “normal.”
But many of our traits are normal human traits. There’s this interview with Kevin Pollack and Dan Harmon where Kevin says the aspie traits (as he understands them, which is superficially) fits his experience, too. But he’s an NT. [www.youtube.com/watch?v=Emo-OT3RzQc]
And some aspies see their difference from NTs as no more significant than in personality tests, like the Meyers-Briggs types or astrological signs. So I’m a thing you call a bloople and you’re a thing they call wiizoolidee and so what?
What if everyone has a bit of aspie in them to some degree? I teach writing, analysis, and English grammar to apparent NT adults. I can break down problems for them (because that’s what I did for myself) and teach them the steps to achieving flow-state creativity in writing. Not all get it, but some do. Are they touching the same deep focus experience I am? And do these people also get confused about reading other people’s signals, too?
I don’t know what I think yet. I’m in the collating data phase right now on this issue. But I do get the sense NTs also do see a profound difference between us. I scored in the 140s on the 200-question Aspie Quiz and was able to see a list online (on 23andme) of others’ answers. Almost all got 50s. That suggests both a profound difference — a clear “line in the sand” between us — and a shared experience — that 50 points.
But of course then I played “Depression Quest” and talked to my ADHD mother and saw so many other parallels in these subgroups, too. There is a lot of overlap.
So: there is a bell curve and we are extremes? Does that sound right?
(And thanks to the person who commented that this is like seeing a mirror for the first time. Nail on the head.)
I relate to this so much. I wasn’t diagnosed until recently, in my 30s, and I’ve been forcing myself to act normal for so long it’s almost impossible to know what not trying to pass is even like anymore. I’ve been labeled weird, selfish, cold, aloof, snobbish–and worse over the years. And yet, somehow, some of the few to whom I’ve chosen to disclose refuse to believe the diagnosis and attempt to invalidate it. Even my previous therapists! As if it’s easier to view me as weird, selfish, cold, aloof, snobbish, “crazy”–than it is to acknowledge that my way of being in the world is fundamentally different than most because of the kind of brain I have. Some people experience relief upon diagnosis; in my case, I’ve been in a different kind of uncomfortable emotional place since. I have my answers I always wanted, and yet here I am, still trying to pass, still failing in so many ways to do so, and still conflicted about who I think I am and how it diverges from how I am seen. It feels like there’s no winning at it.
Thank you for (another) insightful and well penned post, which IMO is increasingly relevant as next gen Aspies are being taught not to “pass” with the vehemence we were in the 90s… But it seems rather their gear is “co exist.” Very interesting–to wait and see how that will play out over the next decade…which is tangentially connected to the situation which promted my rereading of this post. My comment may seem left of field, but I “came out” with my ASD at age 35 (I was diagnosed as a “potential female with ASD” in the early 80s, so I was taught to pass, and taught hard- same doctors from age 6-21– so literally I had the NT behaviors down to near perfection). It was interesting, peoples’ reactions to the news were to DENY IT. As in “no not you” and in some cases I was accused of psychiatric hypochondria– and a host of other absurdities which drove a wedge betwixt myself and NTs in an abrupt manner I’m still waffling with 5 years later. Two years after that debacle I became a mother at age 37… such a fascinating pattern has emerged on the playground where I take my (now 19 month old) to play, daily. Every baby, toddler and kid seems magnetically drawn to me. At times, I am literally surrounded by a group of them and my own daughter gets panicky in the crush to get near me. I don’t pass anymore. I’m blessed in the fact that my life is such that I no longer have to hold a job or deal with all and sundry unless I selectively choose to… And my life previously as a passer had taught me that I like children, but they are lukewarm toward me. Since I stopped passing, consciously, and attempt to be pragmatic– NTs are alright, Aspies are all right, Rastafarians are alright, to each their own, like figurative diasporas of humanity all trying to get along type logic– I am a kid magnet. The parents of these children like to at first extol how “nice” I am. They go on and on about my niceness. It’s even worse if there are dogs around because then am surrounded by kids and dogs, and NTs decide that this makes me “nice.” As long as I do not remove my sunglasses and I keep it to one word responses my niceness isn’t questioned, how could it be, when their children and animals flock to me like the Pied Piper, right? WRONG. I have kept a journal of exactly 18 attempts to engage these parents when they make overtures to conversate and within seconds they are in full withdrawal. I can be holding their child’s hand and their dog is in my lap and still, total retreat. Where it gets interesting is there are 3 Aspie kids that frequent this playground. Their parents apologize for them and excuse them as they approach me… “I’m so sorry, he’s Autistic, he behaves unpredictably” or what have you. When the child persists in trying to be near me despite the parent’s warnings and I say “It’s fine, we are fine.” And crouch down to engage the child, some kind of magic happens. Laughter and sounds, hugs, sharing of toys, beautiful, engaged behavior from these children… And my heart rises in my chest. I would have never felt this feeling, this all encompassing emotional connection I experience with all children but particularly the spectrum children, had I continued the passing charade. In exchange for accepting the disbelief and pointed interpersonal criticism and broken relationships wearing my ASD publicly has brought me, and the myriad soul crushing encounters of the last 5 years where I have at times nearly lost my nerve and re-donned my NT Protoself… I have gained a world of children! What this says to me is that children greet sincerity and authenticity with universal acceptance. Some NTs have these magical kid powers also. My guess is they are also absolutely authentic, and taking a beating for it behind closed doors one way or another, since it appears authenticity itself is the rare gem. I have been told repeatedly lately that I should rejoin society, complete my PhD and work with children. I am considering it, actually. And here I am supposedly communication disordered. There’s a lot of passing going on. There is a ton of inauthenticity going on– but not with children. I share this because perhaps others who eschew passing may also want to be bold and make themselves available to kids— just to see what happens. I’ve never experienced such feelings of belonging and relevance as I do at the playground. And if you met me I’d be the very last person another adult would think children would like, given how quickly I can alienate adults just by breathing in their vicinity. Sorry for the long share! Hope someone finds it relevant.
Thank you for sharing this, it is very interesting. I can’t think to write at the moment but I have had some similar experiences and know of other people who have too. Gives me a lot to think about. Thanks!
I’ve always noticed this subtle difference between how other people treat me and how they treat each other. I guess I live in the uncanny valley of social skills – good enough to pass as allistic, bad enough that I’m considered “weird”. Although there’s a good chance I don’t pass as well as I think. My best friend is very honest, and sometimes she’ll tell me what someone else thinks of me/my behavior. Like apparently her parents have noticed that I don’t really make eye contact with them. Or that this one girl I don’t interact with at all thinks I hate her (for reasons unknown – maybe because of the lack of interaction? It doesn’t make sense to me). And I thought I was passing so well.
I’m sure lots of people figured out I was autistic before I did. I suspect my fencing coach knows, since he humors me whenever I ask weirdly-specific questions or just generally mess things up socially. I think he might be on the spectrum himself, although I’m never sure if it’s reasonable to suspect these things or if I’m just making it up. Fencers in general are pretty easy to interact with, since 95% of them (at least the ones I’ve met) are really nerdy.
So glad I stumbled on this blog. This piece in particular actually brought tears of relief. Half the battle with passing is learning to accept that our resulting exhaustion isn’t just laziness, that our fragility and sensitivity aren’t mere excuses or figments of our imagination. Thank you for reminding me that my complaints aren’t unfounded and my experiences are valid. That’s exactly what I needed to read tonight. Tomorrow I’ll ponder the relative benefits of letting my mask slip a bit.
I stumbled across your blog a few days ago and can’t even begin to describe how helpful I’m finding it.
This post in particular describes the realization that I’m coming to and really reaffirms my decision to live as I am and let the chips fall where they may.
Thank you
Current workplaces are for the most part dreadful in this regard. Merely the hiring process – with its team interviews, behavioral interviewing and personality tests, makes it more and more difficult to pass even those baby steps. Then, most performance management systems are weighted heavily toward a specific model of supposed good team work, a specific model of communication style, etc. Of course, “coming out” may be no better, I’d imagine I’d have been shunted right quick into a “back office” setting if I’d come out. Not sure what would happen now, at this more advanced stage of my career. At some point (likely exactly 2.7 years shy of retirement – LOL) I may run out of runway and have the mother of all melt downs.
Temple Grandin’s writings are salient to your point. My own experience of having a solid career growth until I made “Director” level are the kind of train wreck lots of us suffer. I “passed” all the tests and group oriented evals by cheating (I know what answers the algorithm needs to spit out particular score ranges–as most gifted systems thinkers can discern easily if they have a companion gift for language) and by cheating in group engagements by correcting everyone else’s shite work and re-tooling the final results before the CEO or Board of Directors received them. That only gets you so far. I’ve met many Aspies over 40 whose careers blew up in their face when they reached upper management. “meet ups” in Los Angeles for HFAs/Aspies are the thing du jour and I attended tons of them. When I read your post I laughed out loud. Almost out of runway is a brilliant analogy. Try to perhaps eject before you crash and burn. Seriously. Those of us who were dismissed or forced to resign in a “check mate” pre-emptive move because the CEO and Board has decided “something was wrong with (us)” are in a dicey position now. Over 40, highly educated, 15-20 years experience that didn’t come to fruition leaves us two choices: convince the heavies in group interviews everything our references are saying is false (so lying, AGAIN, only to have to pass again IF we get the job- and likely be dismissed during probationary period when observed acting how our references said we would) or start our own consultancies or businesses. I’ve heard so many middle aged Aspies say these EXACT words:
“IF ONLY I HADNT OF TAKEN THE PROMOTION.”
For those of us who crashed and burned, we’re in trouble. Starting over in middle age can be quite difficult.
That’s my experience. And Temple Grandin’s treatment of the subject I think is superior. She is so stark. So elemental in her delivery of the idea. Check her out maybe.
I’ve just discovered this blog and have read many of the posts in the last couple of days -love them all- but this one resonated so much I feel the urge to comment. It had never occurred to me until I read this that I might actually not be passing as often as I think I do but now I’ve read this, it is almost as life-altering as finding out I’m an Aspie! I’ve been bemused by the fact that my limited experience of “coming out” has so far been entirely positive despite reading all over the place that disclosure can be a problem. Reading this makes me realise that disclosure is the only way to go: people already know there’s something “off” about me so all I need to do is give them a name for it and then they’re like, “Oh! Yes, of course, that makes sense now” instead of thinking I’m a rude weirdo. I just discussed this thought process with my husband and he basically said, “Well duh”. Thank you for your insight and thought-provoking posts.
IMO, if you are already labeled as weird and geeky then you are better off “coming out” and telling them you are AS.
I love your blog. It always gives me comfort. My favorite line in this writing is “autistic passing is a myth”. As an old guy, I gave up on this concept a few years back. I also see many people that have AS, and always wonder if they themselves know. Passing is truly a myth. A very good friend of mine (I have very few) and I were having a conversation. Something triggered me to finally reveal my AS to him. He chuckled, and said, “I have always known you are different, but this knowledge helps me understand some of your reactions”. I remember thinking, I thought I had pulled it off with him.
I stopped trying about 8 years ago. I stay to myself unless spoken to. I have learned to just hide my real reactions, as NT’s cannot handle honesty as we value it. It was an amazing transformation in the workplace. I no longer feel I have enemies at work. Besides, I prefer to be alone, just no all of the time.
My wife had a tough time with my decision. For example: we have owned the house we live in currently for 5 years. I have never spoken to anyone in the neighborhood. My wife recently asked me what she should tell the next door neighbors, sine I won’t speak to them. I said, tell them the truth, I am terrible at social interactions, and I do not wish to go through the humility in my own home.
PS Please keep writing, we all need your voice!
Not sure how/where I fit into the conversation here. I KNOW I am on the spectrum. I am 64 years old and I guess I have adopted many many ways and tools to get by. Yes, when I discovered my ASD 11 years ago, it was a nice relief. But then my brain asked, “What now?!!” And, unfortunately, I still haven’t’ been able to answer that very well. I do OK at my job as a teacher. But I sure see the crap that I have to work through. It’s hard. People I work with seem to be in this “magical stream” of life – talking casually with each other. Not (apparently) having to read social signals they’re missing. And not feeling that HUGE UNDERCURRENT OF NEGATIVITY when I am thinking “they don’t like me.”!! I guess if I was 12 years old and going through this, there would be some assistance. There is special education, therapy, support groups, social skills groups, helpful parents, etc etc. BUT, since I was diagnosed (self) at age 53, these things were not available to me. Oh well. At work, I do feel at times like screaming out about my Aspergers. Like saying, “This is who I am – maybe you knew this already. But I suck at certain things at work. Mainly about how to be with people. Its called Autism Spectrum Disorder. I’ve got it.” But so far, I haven’t done that. I have been “passing” for so long it’s hard to break old habits and ways of coping. Any thoughts? Thanks.