Posted by: E (The Third Glance) | July 26, 2014

Undercover Autistic: on disclosing autism in the (academic) workplace

Autistic – the word that I first heard applied to me my freshman year of college – it was weighted full of disdain, and I feared it. I feared it, knowing but little of the disorder I’d never really encountered, but had heard some very awful things about.

Autistic – the word that I learned more and more about, as I devoured everything I could read on the subject, which was just so utterly fascinating to me.

Autistic – the word that I learned explained the why of how I interacted with the world. The word that explained nearly everything that made me different from the people I was surrounded by.

Autistic – the word that gave me freedom from my fear and belief that I was just a completely broken person who would never succeed.

Autistic – the word that gave me power over myself and my environment.

Autistic – the word that so utterly perfectly describes me.

So why is it, that I’m so scared to say it aloud?

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One of the things that I’ve mentioned before, is that while I am diagnosed autistic, and being autistic impacts many parts of my life in ways that other people just don’t ever experience, I am not “out” as autistic in my workplaces, lab or classroom. This doesn’t mean that people don’t know there’s something very different about me. They do. But I’m terrified to give the word that explains it all. The stereotypes, the negative views, the preconceived notions, and the horrible assumptions associated with being autistic mean that I am terrified to be open about myself, for fear of all the misconceptions.

As an early-career academic scientist, I don’t want to give anyone any reason at all to discount me. I realize that I’m in a really lucky position, where I don’t have to say my label in order to function (well sort of) in society. The stereotypes and negative regard that come with the word “autistic” are just too scary to contemplate, and I’m lucky that I can, for the most part, get away with not saying it. I can’t risk throwing away my entire career, and I’m privileged enough to be (right now, anyway), in a position where my oddities, quirks, and very autistic self is welcome and accommodated. I’ve built a little niche where I can thrive.

The thing is, the people around me know they’re accommodating me. They know I have difficulties, and that I sometimes have weird challenges they don’t even begin to understand. They know I have to ask for help at strange times, and that I interact with the world differently from them. I’m actually very open about these things, because it is so very obvious to the casual observer. I take control over my situation by being very open and explicit about my difficulties with sound, with talking, with textures and other sensory things. I discuss my difficulties understanding certain kinds of language and I speak openly about sensory processing problems. To deny them would be outright lying, so instead I speak up, I own my quirks, and I talk about them openly. There’s just one thing I don’t disclose. I don’t tell them I’m autistic.

I’m afraid that if I say the word, that I will be labeled forever. That I won’t ever get a job, much less a good one. That even if I do land a job, that I will be constantly doubted, that I won’t get tenure, or that I’ll be forced into positions I shouldn’t be in, all because there’s one little word that people have heard. Please don’t try to change my mind about this. I know there are many wonderful reasons to disclose your diagnosis, but the thing is that most of those reasons would be to the benefit of other people, but right now, it won’t help me. If I tell people I’m autistic, it might help change their views on what autism looks like, what autistic people are capable of. I’m not saying this is not a good thing, it’s just not something I’m comfortable doing.

Several people who know about autism have put 2+2 together. They know I’m autistic. They’re the safe ones – the ones who realize that being autistic isn’t what the stereotypes say. When they hear “I’m autistic”, they hear “I have trouble with a certain set of things, such as verbal and nonverbal communication, sensory processing, etc”. It’s the others I have to worry about, the ones who know about the Hollywood, Autism $peaks, tragedy version of autism. The ones who hear “I’m incapable of doing anything functional, ever” (even though I’ve accomplished a lot to be very proud of that they know about, by any metric). My world is full of the dangerous ones. And right now, I can’t safely open myself up to that kind of scrutiny from the dangerous ones – they hold the power, and I don’t want to be another casualty. Instead, I’m quietly changing the way people perceive me and how I interact with the world, without the word that carries so much force, both positive and negative in my world. And I wanted to share some of the explicit ways that I do so.

This post was prompted by a blog post by a fellow autistic PhD student* who is also in science, who has been struggling lately. This person has been trying to make some very big important decisions, and some of their autistic traits have been making it difficult to communicate with relevant people and work on making those decisions. Like me, they are not openly autistic, and, like me, don’t necessarily want to be, but are struggling with how to deal with their challenges and whether to disclose. I’ve found some wonderful work-around to get the help and understanding I need, and I wanted to share some of them. What follows is an expanded and edited version of the comment I left on their blog.

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While I’m often not immediately labeled as “oh, she’s autistic” by casual viewers, most people can tell there’s something very different about how I interact with the world than what they are used to. When those things become a barrier or a problem, I just want to wail “I’m autistic, that’s why!” But the thing is, that isn’t helpful. Most people don’t know what “I’m autistic” means in practical terms. They might know a stereotype, but how that applies to the situation at hand, is almost always useless. What I’ve found is that I can disclose specific things I have difficulty with, without giving it a name. For me, personally, and in my own processing of myself, the word “autism” sums it all up. But when I need to ask for help, when I’m struggling, even if it’s obvious (to me) that it’s struggling because I’m autistic, I give a specific example instead.

I say something like “I have trouble verbally communicating (talking) when I’m nervous. Would it be possible to have a brief email conversation first?” – sometimes they agree, sometimes they don’t. But it is a pretty reasonable request, and gives me some time to show that I can communicate effectively and intelligently before an in person meeting.

Or if it’s something to do with dress code, I’ll say “I have very sensitive skin and need to wear a particular type of clothing or I get very antsy and have a lot of trouble focusing because it feels awful on my skin. Can we work around that?”

When I’m stimmy or agitated or just fiddling with things or rocking, I just do it. If it is commented on, I just say “I like to play with xx, it helps me keep my focus”. Plenty of people have fidget toys. When I get excited and squeal and flap, and people tease me, I say “well I’m just excited”.

If I’m having trouble communicating in a group setting, because it’s busy and full of lots of people and everyone’s talking at once, I’ll say “Sorry, sometimes it’s hard for me to filter out background noise from the voices – your brains do that automatically, but mine doesn’t, and sometimes when I’m tired or overwhelmed, it becomes hard for me to talk or listen. Could we chat in a corner?” (Usually, in those settings that I can’t avoid, I place myself in a corner near the door – corner so my back is protected and I can visually see the whole room, and near a door so I can escape if need be)

Sometimes in the above situation (for example when I’m teaching lab and have 5 students talking at me at once), I just say “Just a second, I can only listen to one at a time, (s)he was first, I’ll get to you guys in a minute”. One of my former students told me recently that all of the class was kind of shocked by that, but they were like “oh, ok, with E, you just wait your turn, and she’ll get to you” – plus, I like to think I was teaching them common courtesy to not talk to a person who is actively engaged in conversation with someone else.

When people comment on my clothing (I’m nearly always wearing jeans and a fleece and socks, even in extremely hot climates), I say either “I get cold easily” or “I have sensitive skin”, or if I’m really feeling up for it, I’ll say something like “I have issues with sensory processing, and I wear particular clothes (long pants/shirt) because air moving on my skin makes me feel sick”. All of these are true.

When I get freaked out by an awful noise, I wait until I’ve calmed down, then if anyone asks, I just say “sometimes loud/ high-pitched/ sudden noises startle me, and it takes me a bit to relax after.”

When someone asks if they can call me, I propose email or text or skype (at least I can see them, and for some reason that makes it a bit better). I can’t get out of all phone calls, but it really helps – and as an added bonus, there’s a written record of the conversation, which is really useful.

When I just don’t understand something, or I’m having trouble processing or communicating, and I need to ask for help, I say so. The words “I’m sorry, I don’t understand what you’re saying, would you mind slowing down or repeating it?” are hard the first few times, but they get easier. The words “Please let me think about that for a moment” are also perfectly acceptable.

When I’m about to have a complete shutdown or meltdown, I have a safe place to hide (my office) and a person (my roommate, works in a building near mine) I can alert to the situation if it gets bad and I need actual support. But usually I just run off.

And (on the rare occasion) when people ask about one of my quirks, I explain.

All of these are viewed as perfectly valid reasons to ask for help or accommodations, or to explain differences. You don’t have to say “I’m autistic” – often it isn’t very productive, since most people who aren’t acquainted with your specific set of issues won’t understand what you need them to do, and, as I discussed above, it can actually harm you in the long run. Instead, just disclose the little difficulty that happens and let them build up over time. Those who know something reasonable about autism will guess, and some may ask you explicitly. Those who don’t, will just think you’re somewhat quirky. But they’ll still be able to interact better with you, assuming they want to. This keeps the “ohhhhhhhhhh she’s autistic and therefore shouldn’t even be able to do grad school” thoughts far away, and replaces it with “well, that’s a little strange, but ok, she knows how to deal with it for herself, so lets move on” – something so much more productive.

I’ve found, generally, that everyone has trouble with different things. Some of us have more trouble with things that others find trivial, and that leads to pathologizing and diagnoses. But everyone has things they aren’t good at. Acknowledging that you have a particular weakness (or several, though I rarely do the barrage all at once – it usually isn’t necessary), is totally fine, and can even help elevate you in the eyes of potential supervisors. Acknowledging it and having a work-around or some other alternative solution, is even better.

Of course, there’ll always be people who respond to things like this negatively, but I’ve found that the vast majority of people respond pretty positively when I disclose a difficulty. Sometimes I don’t have an immediate solution for it, but often I am able to come up with something (especially with a little thought). And it seems to have done me pretty well. Who knows, maybe one day I’ll feel safe using the Autistic label in my workplace. But even so, I’ll still have to explain what my specific needs are in context. For now, I just explain my immediate needs, in small, “safe-to-disclose” chunks, without the label of Autism or Autistic attached.

I know I’m autistic. And I know what that means for me and how to communicate it to people when I need to. And right now, that’s enough.

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*If you would like me to link to your post, you know who you are, please let me know and I will edit accordingly. :) EDIT: Post was edited to include a link to Sleep Wake Hope Then’s post “telling autistic


Responses

  1. Hi. Thank you for this.
    (And you can link to me if you would like.)

  2. I understand this so well, there are many situations in which using the word autistic feels unsafe for me too. Most of the time I explain the individual need instead, as hard as that can be sometimes. This was a really excellent discussion, thank you.

    • I wanted to add that the mere process of explaining can be overwhelming too, regardless of how we do it. It’s particularly overloading and confronting for me to talk about myself with others. I don’t want to draw attention, and explaining that I need accommodations and why does exactly that. It’s often a difficult choice between speaking up and suffering through the situation, each option resulting in overload.

      • Absolutely agreed – the process of actually using the scripts I’ve developed to explain can be overwhelming, especially if I’m already overwhelmed. If I am at a point where I can’t use the script, I just let myself disappear and explain later. Most of the time, that is fine… Or sometimes if I know its going to be bad beforehand, I warn someone I know in the crowd that I might not be able to tolerate the situation, and that if I look like I’m getting panicked, to tap me, so I can get out before it turns into a complete shut down.

  3. Thank you so much for sharing with me your life with autism. I have a friend who has three autistic children and I want to learn as much as I can so I can interact with them.

  4. I came here via Bec. This is very helpful for me, the (mostly) NT parent of an autistic child. It’s a great way to reframe things which I might otherwise feel compelled to explain as part of my son’s autism. I really like the notion of addressing the specific need as it arises. Thanks!

  5. Sorry most of the people you work with are the dangerous sort. :P

    I use a lot of these same strategies. Even though I’m very out in general, including at work, even though the vast majority of responses from people I work with have been accepting and wonderful…most people just really still don’t know what autism means in concrete enough terms for the information to be of any help to me in any given situation.

    So it’s “I cannot do conference calls because I have a hearing issue.”

  6. Ah yes, I can relate to this. http://endautismstigma.wordpress.com/2014/04/14/shame-and-the-unwanted-identity/
    FYI it’s not what you might think

  7. This is so true… You have said it very well and I have to agree. I wish I could be more open about it (if somebody asked me directly, I certainly wouldn’t deny it) but until there is better general knowledge I fear that would only make things much worse for me. I have only told a few people close to me in “real life.” The reaction was not necessarily good, and coming from people who know me better I can only imagine how much more difficulty would result from people who don’t know me as well and also don’t care about me. I make similar explanations to those you’ve mentioned when things come up. Someday I hope things will be different. I would like to think that being open about it could contribute to a better understanding of autism in general but I that hasn’t been my experience so far. So I leave it to a select few who maybe care enough to get past the preconceived ideas.

  8. Thank you so much for your post. I live your approach. As a parent I’m nervous to label my child because I don’t want him to be underestimated. I just figure if strangers can’t figure it out then so what. I’ve always wanted to ask someone on the spectrum if they rather say “I’m autistic” or “I’m living with autism?” My child can’t answer that for me yet, but I can’t wait for that interesting conversation.

    • There’s a TON of really well-written posts on this (one in particular, but by no means the only one) – http://www.autistichoya.com/2011/08/significance-of-semantics-person-first.html

      The vast majority of us prefer “Autistic” rather than “with autism”. You can’t separate the autism from us – without it, we’re totally different people. We are autistic, in the same way that someone is blonde, or French, or tall. “Identity-first” language is how we refer to it, if you want to do more googling – there are a lot of great articles out there written by wonderful autistic adults discussing this.

      Thanks for asking about it! :)

    • Maggie: Overwhelmingly, most adult autistics call ourselves autistic. It’s not something that can be cured or removed, so saying I’m a “person with autism” is like saying I’m a “person with maleness.” It’s also a way of marginalizing how central autism is for almost every autistic I’ve ever met.

  9. I have a similar approach, although I do actually use the word autistic… but always embedded in very concrete situations and examples of what I need and what I can do myself.

    For example, I had a job interview a couple of weeks ago for a management position. I openly stated that I was autistic and that I have trouble reading facial expressions and non-verbal clues. The person who was to be my superior asked me how I would be able to manage a team of people if I was unable to gauge their moods. So I explained that because I am aware of my own weak points, I’ve developed work-arounds such as always asking for clarification, communicating directly and openly, and to ask for regular feedback. The fact that I addressed my own issues made a far more positive impression than hiding it would have done, and he actually said so. I got the job. :)

    So I completely agree with you. It’s my choice to label myself openly, but it’s not absolutely necessary if you take this approach of addressing individual needs. And let’s not forget the strengths!

    • “because I am aware of my own weak points, I’ve developed work-arounds such as always asking for clarification, communicating directly and openly, and to ask for regular feedback.”

      Yes, exactly. I’m very honest about my weaknesses and the workarounds. I just don’t use the word “Autistic”…

  10. Great post on a difficult topic. Thank you.

  11. I’m very much with you in your strategies, and I think it is way better what you do than mentioning “the A-word” (autism, aspergers, whatever you prefer) – at least I think itis best to explain all the specifics first over a long period of time, and when fairly certain the”dangerous” people have been educated enough to not be so dangerous, then perhaps some day in the future it may be safe and beneficial to put the autism label on top of it all.

    Everybody who knows me privately, knows about my issues with background noise etc (no way I can hide that, because there are too many things usually expected from people that I can’t do), so the sensory part is well explained. They also know that I’m socially different and no good at small talk, and I also explain other issues /particularities as they become up / are relevant in the situation, very much like you do. This enables me to, if I want or need to later, put the label on and NOT have the associated stereotypes pulled down over me with it, because at that point of time people will be “educated” enough about what it means in my specific case.

    (That is of course because I can get by. I am not saying this is the right strategy for everybody.)

    That said, I have not told my employer anything at all because my issues do not affect my job in ways my boss would know about, and I am good at the job despite the issues and get positive feedback, so there is no reasonto bring up problems (background info: I am working independently from my car not in a workplace, and communicates with my boss mostly via emails).

    Unfortunately I will probably have to quit because I need a bigger, more predictable income (it is part time & under casual conditions/hourly rate) and due to other circumstances this is becoming more critical now. In that regard, I’m thinking to meet with my boss and explain my situation including the challenges I’m facing with most jobs, in the hope she knows of opportunities I’m not aware of (she is a great, very trustworthy boss and the organisation is the best employer I have ever had. and she is very happy about my work & attitude).. and for that to be relevant, she’ll need to know about my specific workrelated limitations. I will explain the particularly issues I have but I am not planning to mention autism/aspergers, although I won’t completely rule it out if for some reasons it seems very beneficial to do so in the situation.

    However, my situation is different from yours because I don’t have a career and isn’t in the “early stage” of my worklife. I am in the late stage of my worklife after an incredible long cavalcade of mostly short random low level survival jobs (so there isn’t really that much at stake, never was). I very much admire your strategy of turning your passion into a career and wish I had been that self-wise, confident and directional when I was in your age!

  12. I understand entirely your dilemna, and empathise with your position (gosh someone with asd can empathise!). Maybe you can make more impact by working to the top of your field and then one day coming out as being asd! This would be a much safer route for you in this position I think, while still giving a role model for future generations.

    For me I have openly declared my Autism for all to hear. But my situation is different to yours, I’m an artist and the art world is more accommodating and accepting of autism. Also as the father of three autistic kids, I don’t want them to grow up feeling like they should be ashamed of who they are. I’m hoping that any difficulties I do experience from being open ( I still encounter people who discount me because of it) will eventually be worth it if it helps towards making a better world for my kids.

    Lets hope that a time comes when being Autistic is something to be proudly declared not hidden behind fears of discrimination!

  13. This is really great. May I include a link to this on the employment tab of a website I’m creating? It’s for parents/anyone who want to know more about autism and is a doorway to AUTISTIC voices/bloggers and neurodiversity friendly parents / professionals. The website is under construction but the facebook page (Autistikids) is up and running – full of links to the same type of posts. I can be reached at autistikids@gmail.com if you have any questions. Thank you!

  14. 1st and foremost, I am so glad that you wrote your text (at least in part) with A…. in mind. I do hope that some of the scripts you describe or variations thereof can help. You see, to their post of June 16 I wrote (a 12000 character, ‘omg’ in hindsight; this one is not short, either) comment from the ‘academic’ side of their search for the ‘right’ lab but I am quite sure that your approach is more constructive. I keep my fingers crossed for them.

    2nd, confirming your post with a part of my biography. Several years ago, I was (mis)diagnosed and treated for ‘therapy-resistant depression and comorbidities’, including stationary treatment. My ASD was not recognized even in such a setting. I got my pills and some supervision. Point.

    Eventually I returned to my workplace, shaky and drugged. Most people were not aware of the reasons for my hospitalization. Over the months I ‘outed’ myself, developing scripts like. ‘Sorry, talked too long / exalted on that, it is the anti-anxiety meds’ or ‘Is it OK if you do the first draft of our project and I work from there? You know, my long term memory is affected by taking XY.’ or ‘I must take a break of an hour now. To stay concentrated so long is tiresome since I am on (med) YZ.’

    Sounds familiar? Unknowingly by then I described my Asperger’s! Which finally I let out. Btw, still medicated but at tolerable-functional dosage. I had passed as NT for twenty years of a career in biomedical research. At the prize mentioned above. OK, nobody knew better, diagnosis in the 1980ies and all.

    I cannot claim my peers were fully supportive and accommodating. But it was not bad either. Describing symptoms of depression is socially almost acceptable nowadays. Overall, six years later I (re)gained quite some respect not only for the publications (impact factor) but because it was finally acknowledged that it always had taken me more effort than others. And it is completely OK now with everybody that I do *not* participate in parties and the likes of it but donate a ball for the soccer team or cookies for the days before Xmas. But there will be no *second* clarifying outing for Aspieness :)

    Postscript: An earlier outing scripting like you would *not* have affected my career but would have made life easier. I can elaborate on that if you want but it will be of less interest to the other readers.

  15. I’m not autistic — but did grow up as a faculty kid, the daughter of two highly-regarded research scientists. In my experience, academia is a friendly and welcoming and remarkably “forgiving” place for folks on the spectrum.

    My parents aren’t on the spectrum but at least a third of their same-ish age faculty colleagues probably would be had they been born 20-50 years later. For grad students, post docs and junior faculty today? Probably 50% in both materials science and physics.

    Heck, as a grad student (at a different school), my advisor’s lab had to moved across campus at great expense in the wake of a, um, scientific disagreement with fellow professor “Dr. X” that came to be known as the Great Snowball Earth Argument of 1996. Because both men, tenured professors in their late ’40s were literally incapable of not practically coming to blows when the crossed paths in the hallway of a six-storey building in which most of geology department was based. Nobody batted an eyelash — this kind of thing happened every few years, so often that the chair/dean “got” that mediation wasn’t an option. Neither prof was *capable* of not engaging.

    The only other workplace that cheerfully considers this sort of behavior from otherwise smart, accomplished grownups who are generally expected to know (way) better is a teaching hospital. Like universities, they tend to be places where staff having all the proverbial eggs in the brains basket (with none/few left over for the social skills basket) is par for the course.

    The Peter Principle states that an individual will be promoted until they become incompetent — and a really bright [staffer] who delivers results will get really, really far even with zero people skills.

  16. Another wonderful article, E!!
    Thank you!

  17. THANK YOU FOR SHARING. IT HELPS SO MUCH TO KNOW HOW YOU FEEL, GIVESME AN INSIGHT TO HELP MY OWN KID WITH HIS STRUGGLES AT SCHOOL.

  18. I do use the word Autistic because I want to put a real face to autism, but I’m an in-your-face-advocate sort of person. But same as you, I am able to say, “these are my strengths, these are my weaknesses, here’s how we can work best together” and I think giving people the tools (and not necessarily the label) can help people understand. Whatever you are comfortable with!

  19. I like this approach. In a way you’re providing people with more useful information than the label would on its own. The label is only useful if the people you’re talking to have a good understanding of it. The specifics are more universally useful since they can be applied immediately, regardless of the listener’s level of understanding. It’s almost like the difference between writing an article for a magazine and writing a paper for a peer-reviewed journal. By virtue of their being peers, the audience of the journal will understand terms and labels in the paper that the audience of the magazine will not. But the audience of the magazine will be able to understand specific examples that they can relate to, regardless of their background.

    I’m cringing as I write this, but I’ve found that people are more tolerant of injury or age-related disabilities than they are of innate conditions. I had to smile at your example of the students in your lab all talking at once. I can’t process more than one stream of speech at a time, either. At one point I had a therapist who liked to play music during his sessions. I tried to explain that music with lyrics threw me off since I could only listen to the lyrics, or to him, but not both. I don’t think he ever got it. But when I tell people, “I have a hard time hearing. Can you turn off the music so I can understand you?” they have no issues with it. I’ve used the same explanation when telling people why I have to stare at their mouths when they talk. “I’m losing my hearing, so I have to lip read.” No problem. But the times I’ve tried to describe auditory processing disorders it has universally fallen on deaf ears (pun intended.) Sometimes simpler is better.

    I have disclosed to people at work that I have Tourette’s Syndrome. The symptoms can be more obvious than those of autism, and the alternative explanations – head injury, drug reaction, “crazy”, etc. – can be more damaging from a professional standpoint. I think it was the right choice for me. But I understand your reasons for not disclosing your autism in your workplace.

    I enjoyed reading the comments regarding the difference between “with autism” and “autistic”. I’ve debated that same question as it applies to Tourette’s Syndrome. “Tourettic” does get used from time to time, but usually to describe a behavior rather than a person. And yet TS is as central to me as autism is with my son. I think it’s just a fluke in how things were named. My son is autistic. Me? I’m ticcy. It just doesn’t have the same ring to it.

    • Hi Tom, thanks so much for your comment, I really enjoy hearing your perspective on things. And yes, I’ve found people to be much more accepting of temporary (injury/illness) disabilities as well. Sad, but true. I like “I’m ticcy” – it has a neat ring to it.

  20. I never thought about this before. It’s very interesting. I don’t tell people I have autism simply because I don’t really see a reason to. I have told a couple people and it just happened that they had children with autism, but I wonder if people would see me differently if they knew I have autism.

  21. Thank you very much. It is quite similar with having Klinefelter’s syndrome though people usually know even less than about autism. Autism often has these clichés like either savant abilities like rain man or unable to communicate or empathize, while people here in Austria don’t know anything about Klinefelter and if they google it, they will mainly find out it’s a physical condition. In fact, many traits listed for Klinefelter are autistic traits. However, if I say that to colleagues, things you described would happen: Especially those who only see the negative side of that condition and probably need another reason to throw me out would be confirmed. Despite knowing about the success I had, the prejudices would dominate and moreover, not knowing how to treat me now. Some people would even think I misuse it as an accuse (instead of a reason) warranting all my (bad) behaviour.

    Sometimes, it is not so easy just to tell them why you act in this manner. People tend to say “change your attitude, don’t be so upset when plans suddenly change!” or “don’t critisize everything!” or “I told you so, why didn’t you do it?” That’s not so easy like it sounds when your brain is wired differently and you can’t suppress being upset or being too honest or did the same mistakes again because your short-term memory is fucked up. If you have already the label of bad attitude (like doing it on purpose), it is quite difficult to get out this without a deeper explanation.

  22. This post shows that pretending to be “normal” isn’t simply betraying their autistic identity; it’s what they do to survive. Autism Speaks, Hollywood, and the view of autism as a tragedy has simply made it harder for autistics to openly and unapologetically be autistic. This explains whyso many autistics aren’t willing to “come out of the autism closet.” They may be following similar career paths as you. They may be going through Greek pledging, internships, or program applications, and not want to ruin their chances. Since these are public organizations, we need to ensure we create a world wherewe are rid of the autism “Don’t ask, don’t tell” mentality. Accepting one’s autism and being able to tell about one’s autism is essential to one’s mental health an self-esteem. I remember when I was applying to a college program for people with intellectual and developmental disabilities, which I graduated almost two years ago, and I needed a recommendation from someone in my workplace.

  23. It’s fascinating to hear your perspective. My brother is also autistic so this helps me to get a clearer understanding of what he lives with. Thank you and best of luck.

  24. I knew an autistic person in Seattle. I don’t know how functional he will be. He had many nervous issues too.

  25. Autistic? The scary part is not that someone could be labeled (diagnosed) autistic at 21, but that Alzheimer will be diagnosed in your 40s… Science is making some progress on that direction!

  26. Reblogged this on Fdm-Gaming.

  27. Reblogged this on helptest2015 and commented:
    more about autism – i will be posting more abotu this soon…

  28. Such an insightful blog! I can relate like many others, I’m sure; not because I’m autistic, but I have certain characteristics that I don’t want to be judged by, in the workplace especially. It just goes to show that humans are creatures that love to judge, whether that be due to someone’s age, height, outward appearance, mental abilities, disabilities, the list goes on… I know that it’s probably not exactly the same as your situation, but if it’s any consolation: we’re all being judged in one way or another!

  29. Reblogged this on destineypattillo.

  30. I think this is perfect! Such a good read & great topic. The school system in place today does nothing but box children in & feed to these awful stereotypes. Different doesn’t mean less equipped or less human. I feel so patiently about this topic & loved reading from this point of view!!

  31. Reblogged this on datsozguevara.

  32. Reblogged this on xdayschocolate.

  33. Reblogged this on fine art photo a love story and commented:
    This was beautifully written

  34. I absolutely love this you are a strong individual thank you for this I want my nephew to read this because he’s autistic as well. Thank you.

  35. This post came up on my reader and im so happy I read it! I actually don’t know anyone that has autism. I live in South Africa and I think we are a little behind when it comes to diagnosis.

    But your article is great because it made me realise I was working with stereo types from all my “Hollywood research.” Thank you for opening up my mind.

    If anyone ever tells me that they are autistic I know to ask what I can do to make our interaction easier.

  36. Reblogged this on davideah.

  37. Dang I never knew all of that! Thank you for explaining so much more thoroughly than just “it’s because I’m autistic”. I feel like I can understand my autistic friends so much better now. Thanks for that.

  38. Its great to read something from a different perspective.

    I am a Mum of 2 Autistic girls, one non verbal. My eldest tries her best to describe how she is feeling in certain situations. She doesn’t like having to speak in front of people and she struggles to explain how this makes her feel. At school they give her a time out card when things get to much. I am grateful that the school are very understanding and are doing everything they can to help her. Sadly this wasn’t the case with my youngest daughters school which was a special school for Autism. It ended up with having to move schools and now she goes to one where she is the only one that doesn’t talk. She has come on leaps and bounds and in the last week she has spoken 20 words.

    It would be wonderful if everywhere and everyone had a better understanding of Autism. Even I get it wrong and I live with it on a daily basis.Thanks for sharing this.

  39. I am sorry you are so uncomfortable with what you call your “diagnosis” that you do everything possible to avoid naming it while still acknowledging all the ways this condition impacts your life, your work, your learning and your interactions. That makes me sad for you and for those around you.

    I think people in the modern West, especially the USA, are much too self-involved, too obsessed with ourselves and our egos to acknowledge that we are NOT all that unique, that we each DO fall into groups or categories, and we avoid accepting that we DO have similarities that are worth mentioning. Autistic people are not special, any more than people with muscular dystrophy, cancer, cystic fibrosis or any other physical/mental issues with a categorical name are.

    Sure: you can line up everyone who has had polio or is gay and find many individual differences. HOWEVER, there are more similarities among those who have had polio or who are gay within that group than there are with those who are not in that grouping, when it comes to assessing the characteristics that a particular grouping confers on its members.

    Being autistic is no different: everyone who is on the Autism Spectrum has more similarities with others who are on it than with those who are not when it comes to learning, social skills, reading social cues, sensitivities and other needs for accommodations with learning and work. The exact specifications of those needs and displays will vary, but they are mostly more the same than different. That’s the way the diagnosis was made in the first place, after all.

    I believe that you do the people who work or study with you a huge disservice when you only give your condition’s parameters to them, piecemeal, parceling information out the way YOU think they need to know things about you, and not giving them the diagnosis. Once they know you’re on the Spectrum, they can research, talk to others, ask you pertinent questions. They can become your allies.

    As long as you stay “hidden” (and I’m glad you know you’re not any more hidden than an ostrich is), people who know you are left to maintain a kind of silence around you. They can’t ask what they would want to ask or support you overtly in any way you haven’t invited. You are inhibiting your possible supporters by not claiming yourself as autistic.

    Yes, it’s your choice. I hope you make a better one soon.

    Best to you,

    Sally

    • I respectfully disagree, Sally. I don’t think there is anything wrong with explaining myself on a “by need” basis. No one has a right to know someone else’s diagnosis, and I think you misjudge people. You say “Once they know you’re on the Spectrum, they can research, talk to others, ask you pertinent questions.” – yes, the one or two who believe that it is worth their while. Those are the people who DO know. The others will not respond that way, they will say “oh, she’s autistic, she’s [all the bad stereotypes], we can’t work with her”. I’m sorry you disagree with my decisions, but they are mine to make and I don’t need your approval.

      • I find the statement:

        ‘Yes, its your choice, lets hope you make a better one soon’

        To be the most condescending thing I have ever heard in my life!

        What an arrogant and self important statement to make, regardless of your personal opinion.

      • Okay. Here’s how this works, in case it’s not obvious. You post something (two things, actually) on a public blog space. That invites comments, critiques, dissent and agreement. If you don’t want or can’t accept all four of those, perhaps in equal measure, don’t post.
        I wasn’t imagining that you sought or needed anyone’s “approval,” but it did seem that you were seeking opinions/comments.

        If you only seek to hear from those who agree with you, better to say that up front.

        Best to you,

        Sally

    • Hello Sally,

      I’m wondering where the condescension comes from – “what you call your ‘diagnosis’…” – why are you dismissive of the author’s reality and of her diagnosis?

      Nowhere does she say she considers herself special, unique, etc. She describes her experiences. They are significantly different sensory/perception-wise than neurotypical experiences. Your choosing to believe otherwise does not change this fact.

      Regarding sharing a diagnosis, the author of this post isn’t alone in dealing with this issue: (http://conditionallyaccepted.com/2015/03/17/autism/)

      From your comment, I’m assuming that you read only the post and not the comments, as there are at least 5 commenters that share the same or similar issues/concerns.

      Are you familiar at all with the prejudice that autistic people are subjected to?

      I’m wondering if you know about the actual autistic experience vs. media presentations/stereotypes that most people are familiar with.
      The media consistently portrays autistics as either savants, or like “Rainman”, or connects autism (incorrectly) with violence. A family was forced off a plane because the pilot was “nervous” about “what MIGHT happen”. Bullying of autistic children – and adults – is common. Several of the bloggers I follow, autistic parents, find that they were listened to in parenting groups (for parents of autistic children) – UNTIL they disclosed their diagnosis. Then they were discounted or ignored.

      Media drives the common perception, and unless you’re lucky, this is the perception autistic people have to deal with.

      I’m glad that the people in your circle of acquaintance are all open minded, research oriented, curious, and non-judgemental. I’m lucky in that my friends are like this (I’m not autistic, so that’s not an issue), but even they don’t know much about what autism really is.

      In the real world, in the general population, people judge, ostracize, dismiss, and if you’re lucky they might google – which doesn’t guarantee accurate info about autism at all.

      And, your concluding statement of “I hope you make a better one” – was not a “comment, critique, dissent” – it was judgmental and condescending, as was your “Okay. Here’s how this works, in case it’s not obvious.” comment.

      Critiques and dissent don’t slap people down and disrespect them.

  40. Reblogged this on dongxiang033.

  41. This was a beautifully written article. As a retired teacher, I frequently had many students try to talk to me at one time. It is confusing and not always beneficial to try to teach in that situation. So I made them talk one at a time. Since many were trying to ask the same question, it saved time and wear and tear on everyone. And it was just good manners. I’m not autistic but still … Everyone doesn’t need to know the personal details about each others lives. The work place needs to be professional and too much information about each other is akin to dating all the people of your workplace. Good luck and endure. You brightened my day.

  42. Reblogged this on Franki Andersen.

  43. Reblogged this on The Heart of an Aspergian.

  44. Whoever said you’re autistic was wrong. Why do you cling to that label? You’re only a difficult person. No big deal.

    • Obviously, you who have never met me and read one blog post of mine, knows significantly more about me than I do or any medical professionals or anyone else. Congratulations.

  45. A lovely post; fascinating to see the way you perceive the world. Beautifully written and wonderfully explained, thank you for sharing with the world.

  46. Reblogged this on dohertyexpress.

  47. As a mother who found out her son has autism , It wasn’t hard for us to understand because he is ours .me know everything about him likes and dislikes fears what gets them excited but often I find that others do not understand all they can do is judge why was your child always screaming! why can’t I hug him he doesn’t know how to write a bike or swim why does he talk like that oh he’s just weird or he’s bad or you’re a bad parent! No I am not and he is not a bad kid . And he’s not always screaming he’s always happy he just needs understanding and patience because what seems trivial to you means the world to him his heart to be broken in an instant and the smallest thing can scare him I know many people think well just make him do it or make him eat it but that’s not the case the decision I make at that very moment is permanent and or very hard to reverse … Many people don’t get what I’m saying or trying to say but I will not traumatize him to make my life more convenient or for you to stop hearing him being upset in the end his happiness is what matters and helping him is what matters so if you have a problem with it try asking instead of telling me what I should do because in the end no one knows but they should try

  48. As a fellow autistic scientist blogger I can relate deeply. I have had to search long and hard for niches that will tolerate what I am. The physics community is one of them and the other was a debate league. People don’t know I have autism unless I explain it, usually they just think I’m an asshole, a spaz, and idiot savant. I usually prefer to be labeled autistic than what people usually apply to me.

    • Nice to hear from other autistic scientists :) Usually my peers just think I’m “one of those really weird academics” and I’m ok with that.

  49. Reblogged this on .

  50. Reblogged this on temisanereyitomi.

  51. Do you sometimes feel the need to tell people you’re autistic, or feel like (rather obscurely) something of a fraud for not letting it out, like you’re hiding something? To me it would almost seem a little odd if someone did come out with it (without context). It’d be like if you were an introvert and at a party. Suddenly, you feel this burning urge to go home. You then stand up, and announce to the table, ‘Sorry. I should tell you all that I’m an introvert. And I need some me time.’ It’d seem especially odd at work. Anyway. There some things I sometimes go through with the old manic depression. ‘Am I being dishonest in some way by withholding this information? Do people have a right to know about my personal idiosyncrasies?’ The answer is obviously – no. Great article though. Generalising and misleading labels – bah! who needs em! Kudos. Thanks for writing it.

    • Sometimes I feel like I ought to say something, but usually its when I’m struggling, rather than just out of the blue.

  52. Reblogged this on From Blossoms to Peaches.

  53. This was an amazing read. As the father of an autistic son, reading this fills me with confidence. My son is smart, has fantastic memory, he is an inspiration. Your words are so true, the uneducated treat it as something it is not, autism is something that the entire world needs to become educated on. Thank you for this post.

  54. Thank you for this, I am going to pass it on to my daughter to read. She received her diagnosis at 18 and, although they had already put some assistance in place for her at college, the ‘written report’ gave us extra leverage in asking for things such as a laptop for taking notes as she types much faster than she writes, using a taxi rather than the school bus to get there, etc. However, once she had the official diagnosis, one of her teachers, I suppose thinking she was doing the right thing, showed the class a film about autism and said ‘can you guess who is autistic in the class?’ Nobody actually did guess – possibly the people featured in the film were in a different place on the spectrum to my daughter – but the teacher told them anyway. So, now, instead of her classmates finding her a bit ‘odd’ they know she is autistic. I’ve never asked her which ‘label’ she prefers. She will soon be looking for a job and there is now an organisation to help people with all sorts of handicaps, aged from 18 to 25 into work. In the case of autistic people, this will involve things like making sure there is a ‘quiet room’ available for them to go to if sensory overload or just sheer fatigue becomes overwhelming. Obviously, this will entail the employers being aware that she is on the spectrum but it might be a good idea for her to start thinking about whether she wants this filtered down through the rest of the workplace or to keep the word ‘autism’ out of it. We are in France where, although I can’t complain about the help she has received within the education system, the general attitudes toward any sort of real or perceived handicap is not good.
    I think your post – and some of the comments – may be of some help in making her decision.

    • Thanks for this – good luck to her :) I’m happy to chat via email too, if she wants to talk to another autistic young adult. (And I speak [marginal but not horrible] French if that helps.)

    • That sounds like an awful thing for the teacher to do, I would have been mortified in her place. It reminds me of something that happened to me in college (I didn’t know anything about the autism spectrum at the time, let alone me being on it). I was tutoring one of the other students in my class on math and in the course of conversation she asked why I didn’t drive. I wasn’t old enough to get a license. I generally kept my age private since I was younger than most of the other students but since she asked me directly I told her and wouldn’t have felt comfortable lying. Little did I know what would happen. The next day before class started, she walked to the front of the class and announced to the entire class “Guess how old qatheworld is? 14!”) After the immediate comments that ensued amongst the class (disbelieving her), the teacher asked me if this was true, which I had to confirm (while wishing I could disappear through the floor). It did not improve my relations with the rest of my classmates, needless to say, the males of which already resented and commented on me getting better test scores while being a girl. Now other people were embarrassed as well and didn’t know how to react to me or talk to me. Only one student continued to treat me normally (and I had to keep on with the same group of students for the rest of the year). Thankfully the teacher at least reacted more kindly by proposing we move on with class at that point and didn’t mention it again or treat me any differently.

  55. Thank you
    fantastic blog
    Good luck
    ———————————
    http://www.skullweb.org
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  56. Reblogged this on pinkjewels.

  57. This is perfection. I am not Autistic but have worked with Autistic teenagers and adults. A friend of mine has an Autistic son and I think she will benefit greatly from this post! Much thanks!

  58. If it doesn’t affect your job, there’s no real value disclosing to people who essentially are strangers to you in terms of your personal life and life outside of your job.

    No matter how well one educates others, there will be people who will judge erroneously.

  59. Thank you for this.

  60. Reblogged this on quotes and notes and opinions and commented:
    The challenges and fears of a functional autistic person (thanks for sharing your story!) :

  61. Reblogged this on Ville. Jarvinen.

  62. Some of these traits I see in my sister who is autistic. But she didn’t figure it out by herself I think, it’s just a kind of survival method.
    I hope I can tell this here, she’s got a different kind of autism. Actually she was diagnosed with with sensory and learning disability. And the really gross thing is how much (financial) help she is receiving now since she was diagnosed autistic.

    But growing up with her actually helped me a lot working with all kinds of people, because (as you wrote above) everyone has some kind of disability and needs to work around.
    Regards

  63. Reblogged this on mmcdermott3.

  64. Reblogged this on Real Life.

  65. Thank you
    Fantastic blog
    Good luck
    ^^^

  66. Reblogged this on The Powers That Beat.

  67. Thanks for sharing your story. It will help me to understand and have more empathy about individuals who have this diagnosis.

  68. Reblogged this on sandylweston and commented:
    A WONDERFUL POST!!

  69. Reblogged this on Unchain The Tree.

  70. Congratulations…a brave article to write. I’ve taught children for 20 years so understand some of your fears and concerns regarding people’s perceptions and labelling and wish you lots of luck for your future.

  71. You have some excellent suggestions, and have made some wonderful accommodations. Similar to a person who is blind or a person who is deaf, you have great capabilities, but you just have to do things differently. Congratulations on making it work!

  72. Reblogged this on PUQUIN WORLD.

  73. This is a wonderful post! I really appreciate you and your taking the time to write this! You have opened my eyes so much and given me a much better understanding about autism. I think that you have demonstrated so much wisdom in facing these challenges and it truly is inspiring! Keep fighting the good fight!

  74. One of my sons is mildly autistic and now an adult blows off treatment for fear of the stigma, its aweful to see him struggle through jobs and relationships.

  75. Thank you for sharing such an incredible insight into life with autism, my brother-in-law is autistic and lives with my partner and I.
    He’s such an incredible guy.
    Interestingly enough it is such a small part of his make up that it’s doesn’t really come into our mind on a day to day basis.
    He will come and chat to me about day to day issues and by reading this I am able to have an insight into how he perceives things.
    Thank you again!

  76. This is excellent, just really a fantastic post. Thanks very much for taking the time to put it into writing. :)

  77. Reblogged this on kissa4aspie.

  78. Reblogged this on hannahglover.

  79. Reblogged this on Royal Graffiti.

  80. Our son, now 12, was recently diagnosed as autistic. We have been hesitant to tell him since we weren’t sure what tools to give him for managing, other than how we already try to help him grow into a more observant and caring person. However, you have touched on things which affect him, like his clothing, which he will someday need to explain. We will use your life skills advice when we talk to our son about his autism. Thank you for sharing your story.

    • :) I’m glad that my experience can help

    • Rebeccannelaidbare – you might find the website “Autism Spectrum Explained” helpful. They also have a kid-friendly site. If you need help re sharing the diagnosis and helping him understand, this page has several helpful links. http://www.autistikids.com/disclosure–diagnosis.html

      He KNOWS he’s different, and he had tests, so he knows that SOMETHING is going on. Understanding what’s up will help him understand himself. Hope that helps!

  81. Thank you for sharing your personal story and your coping mechanisms. From your writing it is obvious that you are a sharply focused, cognitively sharp, and capable person. I can understand how you like to manage people’s perceptions with tactics like initial e-mail contact when possible, just like every other human being on the planet you desire the ability to frame your contact in its best possible light. I mean really, who doesn’t want to start a relationship (personal or professional) by putting their best foot forward?

    While I may not have a diagnosis of autism, as a health care provider I always appreciate those who can be open with their experiences, as they help me expand my own understanding of the patients that I encounter on a daily basis. Also stories like your own help me identify minor little quirks in myself that are similar, and by extrapolating on those I sometimes feel as though I might, just ever so slightly, be better able to identify with challenges people face, making me not only a better nurse, but simply a better person as well.

    While “coming out” at work (a topic that I DO know something about) is a potentially scary thought, with consequences you may not have the energy or desire to deal with, you can rest assured that it is your own personal decision. You don’t have to do it until you are ready, (and you may never be ready and there’s no shame in that at all). You will know when the time is right/safe to do so.

    In the meantime you can simply know that your story has been heard. Your words have been meaningful to at least one person, and now my patients will benefit as well because you were brave enough to share in a forum where you felt safe.

    • Thanks so much for your comment :) I really appreciate it, and I can definitely relate to learning about others experiences so I can better work with other people. All the best.

  82. Brilliant post….I wasn’t diagnosed high functioning autistic until my 50’s but I always knew I was different. When I read up about it, I had a lightbulb moment lol…..suddenly everything made sense! I really enjoyed reading this and would like to reblog it on my own blog if that’s ok? Very well written and helpful……well done! :)

  83. Reblogged this on Christie's Crafts and commented:
    Brilliant post and very well written….really helpful to a lot of people I’m sure. Well done! :)

  84. Reblogged this on My Blog.

  85. Reblogged this on BIENaija.

  86. This was such a wonderfully refreshing perspective. Granted, I know very little about Autism and what it entails, but I understand the dislike of labels.

    One of the things my godmother, who works as a teacher in a local autism centre, taught me was this: avoid the terminology ‘autistic person’. If need be, use ‘a person with autism’. The difference is subtle. While you acknowledge that it is something that they have, you don’t use it to DEFINE them. Unless they themselves are comfortable with being identified so, as observers we don’t have the prerogative of labelling them.

    • Hi there. Thanks for this. However, I and nearly every other autistic person prefer to be referred to as “autistic” and NOT “person with autism”. We are intrinsically autistic – there is no part of our experience that isn’t experienced through our autistic brains. You can’t separate the two, and we don’t want to. By saying “person with autism”, you are saying “well, you would be a person, except you have autism. If only we could get rid of the autism, you could have your personhood back”. That’s not what we are or want. We are people. Autistic people, but people nonetheless. So we choose to identify as “Autistic” to claim that personhood for ourselves. There are many people who have written eloquently about this topic – check out http://www.autistichoya.com/2011/08/significance-of-semantics-person-first.html as an example.

      Best, E

      • Ooh, my that’s interesting. I read through the article and I stand corrected there. (:

        Is it okay if I ask a question then? Am I right to say that this semantic preference presupposes either the autistic person or an observer acknowledging that autism isn’t necessarily a bad thing? Because in Singapore (where I live), autism isn’t very well understood by the masses, and the prevailing perception is that it is generally bad (forgive our naivety). I guess then for an autistic person, they may be raised with the inherent belief that autism is bad, no matter how well they function or how much they are told they are accepted. People who deal with them may harbour such beliefs as well. Under such circumstances, they may prefer distancing the ‘self’ from the ‘condition’. If that is the case, how should we address/refer to them? Is it safe to assume that their mindset towards autism is a healthy one and that they are opposed to separating entities? Or is it better to ask? Hopefully you can share your opinion on this and enlighten us! Of course in an ideal world, we can work towards having a clearer understanding of it, and changing the incorrect viewpoints. (:

      • This might be my favorite comments conversation in a long while. :)

        First off, it’s always ok to ask what someone prefers – when in doubt, don’t assume anything. Everyone has a different preference (you wouldn’t call someone who introduces themselves as “Franklin”, “Frankie” without their permission, would you?) but the vast majority of adult autistic people prefer autistic. Its usually the parents of autistic kids who want person-first language, and their voices dominate the discussion on autism. I commend you for reading this and thinking about it and learning from autistic people :) You are awesome.

        And yes, this view says that autism isn’t necessarily a(n entirely) bad thing. Yes, autistic people have impairments and often need support in certain ways that other people don’t. This is especially true in the “social model” of disability – the idea that the way society runs is what makes it hard for us to function. (example: In a city where everywhere has ramps, curb cuts, and elevators, it’s not disabling to be a wheelchair user. But without them, it’s impossible to function.) But does that make us worthless? Does that mean our skills don’t matter? Or that we don’t have any skills at all? Or that what we can (and do) give to society is worthless?

        In the US (where I live), there’s a belief that autism is worth than death, and then parents murder their autistic children to “save” them. This seems particularly awful, and is one of the reasons we (autistic and disabled people) fight back so hard against that belief. Sure, being autistic isn’t easy, but living no matter what isn’t easy, and we all just want to do the best we can with what we have.

  87. Reblogged this on Blog de Leinés.

  88. I do admire you for dealing so well with your autism. I have got a worse story than yours: I didn’t get a provisional diagnosis till I was over fifty, and then my local hospital refused to confirm the diagnosis even though I had read the book about Asperger’s Syndrome that I was given and noted down thirty traits that I had. But as you said it’s a mixed blessing to be diagnosed because people are prejudiced. The main reason I wanted to be was so I wouldn’t keep thinking that my unsuccessful career was my fault. So now I tell myself anyway that it isn’t my fault.

    I would like to say that I think the so-called ‘experts’ do not realize how each person is affected differently and often you may have the opposites of some of the classic symptoms. Also I think Asperger’s Syndrome is completely different from autism and the latter requires being looked after by carers. (But I sincerely hope I’m not prejudiced against those in the latter category, because their way of seeing the word is a fascinating alternative and could be considered a different kind of normal.)

    • Thanks for your comment. I’m sorry it took you so long to find answers. I do, however, disagree with you – autism and Asperger’s are different. Some autistic people have more severe symptoms in particular says that make them need more or less outside assistance in different areas, but many people with a diagnosis of “autism” are independent, and many who are not “independent” have the ability to choose what they need and want from carers. Don’t we all need people looking after us in different ways anyway?

    • I agree with the third glance, there is actually no real difference between Aspergers Syndrome and Autism, even in diagnosis the main difference was in whether or not the child suffered speech delays.

      This is why Aspergers and Autism have been merged into one condition. Because many with the Autism label were just as competent and independent as those with Aspergers, and many with Aspergers had hidden difficulties that were being ignored simply because of their diagnostic label!

  89. Hi there,
    This is a great post, thank you!
    Myself and others have thought I am autistic for years now but I have never been formerly diagnosed.
    I suppose I just thought there isn’t much point now that I am a Postgrad.
    Having read your post though, I have thought twice about seeking a diagnosis. Many of the things you mentioned seemed so familiar and although I don’t plan to tell people if I am autistic, it would settle things in my own head as I would finally have confirmation of why display so many unusual behaviours and this, I feel, would put my mind at ease.
    I suffer and have suffered with anxiety for many years now which is also quite a common accompanying condition to autism. A combination of my anxiety and quirky traits prevent me from doing many things and thus my life is almost exclusively dedicated to studying. My anxiety was the initial reason I started up my own blog and I hoping it will help me to express my thoughts and feelings without the uncomfortable prospect of communicating face-to-face.
    I hope that one day, regardless of whether I do end up seeking a diagnosis, I am able to deal with people and their judgements as effectively as you seem to.
    Take care.
    Best wishes,
    Melissa
    https://theanxiousmicrobiologist.wordpress.com/

    • Thanks Melissa :) I definitely understand. I think the thing is just to be confident in whatever your decision is – know that you’re making the decision to seek or not to seek a diagnosis purely for yourself.
      Best, E
      p.s. I’m not a microbiologist, but I have done some of that work during my undergrad. :)

      • Exactly that!
        Oh cool :) What is it you are researching for your doctorate, if you don’t mind me asking?

      • Sorry, I don’t answer that question publicly – it’s a small field… but I’m in natural sciences and study (broadly) how life on the planet, especially in the ocean, works. If you email me I’ll tell you a bit more :)

  90. I actually want to thank you for this post. My sister is autistic (she is a very severe case) and knowing how you feel makes me understand a bit more why my sister may react some way.

    I can clearly understand your point of why you are an undercover autistic, the labels Autism has are very hard to change. I just want to tell you are very courageous and someone to admire.

  91. Hi,

    I’m from England,so if I use a word that might not be understood from your perspective,then please forgive me.

    I work in creative arts here,and have done so for over 35 years and have fought against this label “Autistic”.

    We have now reached a point where everyone has to have a label before we can interact with them in education.

    I’m not sure if disclosing to others that we don’t know is always helpful.Words have power,but through various filters driven ,at times,by the media,people judge others adversely when they don’t always appear to tally with the group norm.
    The writer of this blog came over as a erudite,capable,and honest human.However,there was a fear for their future in science which I found profoundly sad.I am sad that we,as fellow humans,can’t look beyond and see the essence of our shared humanity.
    Wishing the blog writer every success from a fellow human.

    • Thanks :)

    • I’m a bit confused, do you mean you are fighting against being labeled autistic, or that you are fighting against other people using the label Autistic?

      Makes a big difference to what you are saying!

      • Hi,

        I’m not Autistic,I work in music Therapy with many who are said to be on the “Autistic Spectrum”.

        Although I may not have a workable alternative to the word Autistic,I struggle with its connotations.

        I am sorry if I confused you.

        Sending you my best wishes,Kernowsmith.

      • It would be nice if we had an alternative label, but it would only be a matter of years (if that), before people put the same connotations on that label too :-(

        I have autistic children, so I am very open about my autism, because I want them to grow up not being ashamed of what they are. Just as I am in no way ashamed or embarrassed about my own condition, I was simply born with my brain wired a bit differently, in the same way that some people are born without an arm or a leg.

        Labels are not the problem anyway, it is the perception of the people who make judgements about those labels. Rather than struggle with the word Autistic, why not strive to understand the condition better, then educate others about what it really means?

  92. I understand this to but in a relationship situation. I didn’t really feel comfortable telling my girlfriend I was Autistic. Well done, this is a really good post.

  93. Reblogged this on We Called Him Lucky.

  94. This is a fabulous piece, and I relate to this totally. I am sure many people have similar strategies. Lots of people hold down very good jobs that have Autism/Aspergers. It is really people’s perception of it that needs changing. People with Autism disorders have contributed a lot to society in the past and will do in the future too. Possible ASD people were Einstein, Mozart, Isaac Newton, Charles Darwin and there are lots of famous people now with it too. Sadly, it is something that we tend to keep secret for fear of being branded mentally ill. Instead we get labelled eccentric/quirky/strange. Would love to be linked in thx

  95. Great post! I work as an abasw in a high school. I often wonder what happens to students when they go to university, or move on to careers etc. This was very insightful. I think having to explain things would be challenging. Not taking the easier route out of difficult situations is commendable. You are more than a label and people should just be open and accommodating not because of a label but because it is kind to do so. Thanks for the good read.

  96. I cannot tank you enough for posting this article. I call it being unique, and I totally understand, the use of the word makes us sometimes feel a bit uncomfortable and unsafe as if everyone could see through us.

  97. Reblogged this on Omni Home Health.

  98. I can relate! My boss used to make comments about my communication skills, or lack thereof, especially in performance reviews. There came a time when I knew exactly why I was the way I was, but was too scared to say. It’s tough.

  99. My son will be graduating high school in 2016 and he is very nervous about learning to live life outside of school. Thanks for this post.

  100. This was great reading, and I found a few things relateable to myself while reading. I’m appreciative of the fact that you were willing to open up about your own struggles, which is something that may help me through my own struggles, especially when it comes to letting people know what those struggles are. Thank you for writing this! :)

  101. Reblogged this on loveisyouranswer.

  102. Wow! Thank you so much for sharing this. I think it is fantastic that you articulate exactly what you struggle with and suggest ways to work around those issues. Autism is such a broad category and you’re right, it really doesn’t give anyone enough information about you as an individual. So even if you were “out,” it wouldn’t necessarily help people in their interactions with you. The specific feedback is way more useful.

    I’m curious, have you always been able to articulate your needs in this way or how did you learn to do this? I am a high school Special Ed teacher and would love to share this with my students. Would you be okay with me having them read this blog post?

    • Thanks! I definitely wasn’t always this articulate… not even a little bit. Actually the time that I became more articulate was about 2 years after I learned I might be autistic (I learned at 19, and took until 21 to really begin to understand). I read *everything* I could find about autism, rather obsessively for about 2-3 years before I started writing. Writing my blog, and understanding the framework that my neurology takes has really been what helped me be articulate about my needs, strengths, and weaknesses. If you look through the archive of this blog (maybe specifically go for the “posts I’m most proud of” page – its out of date, but definitely tells my story pretty well), you’ll see what I mean.

      I completely agree with you – saying “I’m autistic” might help me in some ways, but really not in others. It’s more useful to just say “I have trouble with X, can you please do Y for me?”. I’m happy to have you share this with your students. The thing that helped me the most (and still does, really), is reading about other autistic people’s experiences and how they handle things. I saw them describe certain experiences that were similar to my own, and better understood why I felt the way I did. This allowed me to really grow and develop. Through this blog, it is an honor to sometimes be that role model for others. I’m still learning, though – I’ll always be a “work in progress”. If you look through the archive, you might find some other things they’d like as well. :) Best, E

  103. Reblogged this on maghumman.

  104. Reblogged this on Mentally Wealthy.

  105. It makes me sad how ignorant people can be because they are uneducated on issues like these . There are many forms of autism , and not everyone is the same , who have these forms , therefor no one should assume every autistic person is the same as another person with autism . That can go the same for any type of disability, such as Tourette (I have this ) or Add ( I also have this ) . Anyways , it is great that you do not let this get in the way, and that you learned to cope with the environment you are in .

  106. I just wrote a post about this on my blog at Carolina Parent Magazine. It is the same premise for everyone who has any type of disability. Darned if you do and darned if you don’t.
    https://www.carolinaparent.com/community/blogs/details.php?5640

  107. I think many of us have more “autistic” in us than we know and need to embrace that part of ourselves. In turn, this will increase our understanding. Thank you

  108. Reblogged this on Paul Trujillo.

  109. Brilliantly written piece :)

  110. Thank you for such a wonderful explanation as faced from your perspective. My niece and nephew were recently diagnosed with autism, and I appreciate the insight as I’ve only encountered it previously with one of my Animal Science professors at CSU.

  111. It’s a difficult decision whether to reveal personal background and who to. When in any doubt I think it’s best not to. As said in some of the previous comments especially with immature folk it can be awful. And am afraid there seems to be a lot of people of many ages and backgrounds like that. However, we had a wonderful autistic boy in the Sikh school I taught at and students were supportive and as staff we were given some insights on how to talk directly with him. It is an amazing spectrum and I think we all have aspects of this. I loved the book Curious Incident of the Dog in the Nighttime. It seemed to help us understand another perspective. Take care and thanks for sharing.

  112. Thanks for this post. I do chilcare for a non verbal autistic boy and its like i could hear him speak!!! Glorious to read and empowering. Cheri Jacobs

  113. Reblogged this on Ollie and Emma – The Series and commented:
    Do you know someone with Autism? A wonderful read! Cheri

  114. I can’t relate personally to what you are feeling, I can say that I am grateful for your post and the honesty behind it. My son is autistic and mostly non verbal. He’s only 5 yrs old and I wonder what life will be like for him as he gets older. I always have the hope that he can communicate his fears and wants with me one day. Some people do have a complete misunderstanding for what autism is and always associate it to the most severe characteristics of it.

  115. Wonderful post! And so true, about everything you mentioned. It was like I was reading some of the situations that happened to me, only I replaced the word autistic with OCD.

  116. Reblogged this on Digging Graves and commented:
    Great post about the issues that emerge in one’s professional and private life when they are struggling with Autism. A lot of these thoughts and conclusions can also be applied to other so called disorders, like OCD, for example. Understanding is the key.

  117. Thank you for your post, I understand meself better now at work ;)

  118. Wow I really liked your post. I am visually impaired and I also was told that I had a learning disorder but that has never stopped me while I was in school :-)… I think my friends think I’m quirky and a little weird but they still love me for me

  119. Reblogged this on ArtEdutech.


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