Is it right to be worried about disclosing autism diagnosis?

[vergil96]

Am I being reasonable?

As a child, I used to show many obvious signs of autism/Asperger's. I wasn't diagnosed with it officially, but I got comments and suggestions. And my parents and teachers wondered many times. But showing stereotypical autistic behaviours caused some people to think that I'm intellectualy disabled and they talked down to me. I was a good student and had friends, but it was because of stereotypes and those were people who didn't know me well. So my worry is that if I tell the wrong person or too many people know, especially about the diagnosis, not just behaviours (I don't care about behaviours), I would be looked down on by some people or treated like a total alien. That's another stereotype - people on the autism spectrum are total spocks. I'm just a 10% of a spock, not 100%, lol, excuse me.

 

[Alexej]

to whom have you disclosed?

I think that makes a big difference and also the existing relationship that you have with that person

 

[Xinyta]

Am I being reasonable?

As a child, I used to show many obvious signs of autism/Asperger's. I wasn't diagnosed with it officially, but I got comments and suggestions. And my parents and teachers wondered many times. But showing stereotypical autistic behaviours caused some people to think that I'm intellectualy disabled and they talked down to me. I was a good student and had friends, but it was because of stereotypes and those were people who didn't know me well. So my worry is that if I tell the wrong person or too many people know, especially about the diagnosis, not just behaviours (I don't care about behaviours), I would be looked down on by some people or treated like a total alien. That's another stereotype - people on the autism spectrum are total spocks. I'm just a 10% of a spock, not 100%, lol, excuse me.

This is normal to be consurned.

Though it's also a matter of who you really trust. And know if thier the type to gossip around. There are people who do and no one can help that. We cannot control people. But we can control who we keep in our circle.

In the end though. We cannot allow the veiws and opinions of others to affect our own. As hard as that can be.

 

[Neonatal RRT]

Am I being reasonable?

As a child, I used to show many obvious signs of autism/Asperger's. I wasn't diagnosed with it officially, but I got comments and suggestions. And my parents and teachers wondered many times. But showing stereotypical autistic behaviours caused some people to think that I'm intellectualy disabled and they talked down to me. I was a good student and had friends, but it was because of stereotypes and those were people who didn't know me well. So my worry is that if I tell the wrong person or too many people know, especially about the diagnosis, not just behaviours (I don't care about behaviours), I would be looked down on by some people or treated like a total alien. That's another stereotype - people on the autism spectrum are total spocks. I'm just a 10% of a spock, not 100%, lol, excuse me.

This topic of "To disclose, or not to disclose" is a highly individualized situation. Clearly, it depends upon the people that make up your "inner circle". Family: Depends. I was thinking my immediate family might understand, but instead I received denial and bunch of grief. They had made their "moral diagnosis" of me and so whatever I said was "just an excuse". My wife, it took a few years to settle in, as she was in a bit of denial, but was, at the end of thday, supportive. My children, were like, "Duh, I could have told you that. You didn't need to go to the doctor." LOL! My in-laws, my brothers in-law are aware and were accepting. My father in-law is not aware. Professionally: The people with whom I work closest with, as well as my students, I thought they should know. I needed to know that whatever behaviors they witnessed or experienced with me, they need to put that into proper context. Their annual peer and student reviews affect my pay raises. They need to have some idea of what it is like being me, intellectually, emotionally, sensory issues, communication, and so on. That said, I work in the health field, so the people around me are more open to differences.

 

[vergil96]

to whom have you disclosed?

I think that makes a big difference and also the existing relationship that you have with that person

To clarify: what I have described in the opening post wasn't disclosure, just random teachers and caretakers in childhood who were guessing that since I liked tables, schemes and numbers and questioned social norms, I had Asperger's syndrome.

So far I have disclosed to my closest family, friends from outside university and two close friends from the university (both autistic)

The question is whether to be concerned about disclosing to a wider range of people e.g. lecturers, risk someone overhearing. Some people at my undergraduate degree told pretty much everyone that they were diagnosed with Asperger's syndrome.

I wonder if I'm psyching myself out about it and maybe it doesn't hurt if more people know. Or maybe it does?

 

[vergil96]

The people with whom I work closest with, as well as my students, I thought they should know. I needed to know that whatever behaviors they witnessed or experienced with me, they need to put that into proper context.

I began teaching on a more regular basis.

Practically speaking, one of the students seems worried about my frowning and trouble maintaining eye contact, when he's speaking quietly and there is background noise. I have mentioned already that I have hearing problems, but he doesn't seem to have connected the hearing with frowning, absent staring and lip reading. I have a gut feeling he might feel either that I'm slightly angry at him because of the frowning or that I'm ignoring him while looking 5 degrees away. But I digress. I just wonder what I should explain to someone who hardly ever saw me before and is a self-conscious undergrad student.

Their annual peer and student reviews affect my pay raises.

Makes sense to explain in such a situation. It's better to not be misunderstood. Also on a side note, I have noticed students at my own degree who misunderstood an autistic teacher whose humour might have been too edgy. Either way, they didn't notice he said something sarcastically and it was a joke, not serious. To me it came across as a bad joke and as if he didn't know it was hurtful or unpleasant. He wasn't trying to be mean, he doesn't give off that kind of vibe, just vibe of someone who goes into intellectual debates and has a sense of humour that is poorly understood.

They need to have some idea of what it is like being me, intellectually, emotionally, sensory issues, communication, and so on.

Can I ask how sensory issues affect your teaching? I'm curious what to keep in mind, probably.

 

[Neonatal RRT]

I began teaching on a more regular basis.

Practically speaking, one of the students seems worried about my frowning and trouble maintaining eye contact, when he's speaking quietly and there is background noise. I have mentioned already that I have hearing problems, but he doesn't seem to have connected the hearing with frowning, absent staring and lip reading. I have a gut feeling he might feel either that I'm slightly angry at him because of the frowning or that I'm ignoring him while looking 5 degrees away. But I digress. I just wonder what I should explain to someone who hardly ever saw me before and is a self-conscious undergrad student.


Makes sense to explain in such a situation. It's better to not be misunderstood. Also on a side note, I have noticed students at my own degree who misunderstood an autistic teacher whose humour might have been too edgy. Either way, they didn't notice he said something sarcastically and it was a joke, not serious. To me it came across as a bad joke and as if he didn't know it was hurtful or unpleasant. He wasn't trying to be mean, he doesn't give off that kind of vibe, just vibe of someone who goes into intellectual debates and has a sense of humour that is poorly understood.


Can I ask how sensory issues affect your teaching? I'm curious what to keep in mind, probably.

Sensory Issues: Not so much with teaching. If I have some control over the noise levels with everyone having their little conversations during lab hours, then it's OK. If not, of course, I prefer the decibels to be lowered.

More so with my work in the hospital ICU. All sorts of electronic equipment which I can hear and others not. Frequent loud alarms from patient monitors, IV pumps, and mechanical ventilators. Phone calls. Text chimes. Even the HVAC system in the building is rather loud. There's a LOT of noise that others can filter out that I just have to navigate through.

However, to your points during lecture and during one-on-one's with students, I feel it's important for them to understand how my autism may present to them in terms of eye contact, facial expressions, tone of voice, and my insistence upon accurate/non-ambiguous communication. A few students can be intimidated by me because of my age, experience, and expertise in my field, so with that, these same students may mistakenly take my interactions with them as "too serious", "intense", or "I was yelling at them (without ever raising my voice)". I try to have my students be comfortable with my autism by using some humor whenever possible just to lighten the mood a bit.

 

[marc_101]

That's a tricky issue -- students. I do not disclose it to students, not even my doctoral students with whom I have closer relationships and more contact. I teach master's and PhD students so no young undergrads for me. My concern is that they won't understand how ASD applies to me.

I do say some things, though. For example, I have problems recognizing faces so I tell them to please don't be upset if I don't recognize them outside of class -- and to say hi. I dim the lights and tell them it's because bright lights give me headaches. I also tell them that sometimes I'm thinking about something and I may look distracted, but that doesn't mean that I don't care. When I was sick and tired, I did tell them that I wasn't feeling well because I know that it looks like I don't care about the class when I'm tired.

In other words, I try to say things that affect them, but I don't think they need to know more than that.

So maybe you can tell the student that you have problems looking at people in the eyes because you're distracted -- or something like that. I told somebody once that I'm 100% visual, so I can't look at a person and think at the same time. I have to choose which one I do.

 

[Neonatal RRT]

My concern is that they won't understand how ASD applies to me.

The way I handle this is I don't say I have Asperger's or autism and let them try to interpret what that means. They won't. The same with anybody else. 99.99% of neurotypicals will have zero idea of what that means.

Rather, I will tell them what that means, specifically, when interacting with me. I don't take up class time discussing autism, per se.

 

[thejuice]

I noticed that with my parents after telling them, everything was down to autism or they would tell me things about myself that felt straight out of a diagnostic list from the web. I was noticing certain key words we're all familiar with. At least they try to understand but it feels a little like my identity has been stripped away.

With other people, I wish I hadn't dropped heavy hints and kept it to myself. I didn't realise people gossiped so much, I was quite naive.

It doesn't really matter too much, just I'd rather be private.

 

[thejuice]

Sensory Issues: Not so much with teaching. If I have some control over the noise levels with everyone having their little conversations during lab hours, then it's OK. If not, of course, I prefer the decibels to be lowered.

More so with my work in the hospital ICU. All sorts of electronic equipment which I can hear and others not. Frequent loud alarms from patient monitors, IV pumps, and mechanical ventilators. Phone calls. Text chimes. Even the HVAC system in the building is rather loud. There's a LOT of noise that others can filter out that I just have to navigate through.

However, to your points during lecture and during one-on-one's with students, I feel it's important for them to understand how my autism may present to them in terms of eye contact, facial expressions, tone of voice, and my insistence upon accurate/non-ambiguous communication. A few students can be intimidated by me because of my age, experience, and expertise in my field, so with that, these same students may mistakenly take my interactions with them as "too serious", "intense", or "I was yelling at them (without ever raising my voice)". I try to have my students be comfortable with my autism by using some humor whenever possible just to lighten the mood a bit.

I feel I am like you, my uncle was a professor. I dropped out academically but I have all those problems you talk of. I'm starting to realise people might be intimidated by me. I don't try to be intimidating, it's just I think I come across too serious and intense. (Judging from rare photos of me) I must ask the one person I have somewhat connected with at my local cafe if that is the case. Because I feel invisible there. People run away sometimes if I try to talk to them! Figuratively ha..

 

[vergil96]

Sensory Issues: Not so much with teaching. If I have some control over the noise levels with everyone having their little conversations during lab hours, then it's OK. If not, of course, I prefer the decibels to be lowered.

Makes sense.

More so with my work in the hospital ICU. All sorts of electronic equipment which I can hear and others not. Frequent loud alarms from patient monitors, IV pumps, and mechanical ventilators. Phone calls. Text chimes. Even the HVAC system in the building is rather loud. There's a LOT of noise that others can filter out that I just have to navigate through.

That sounds very stressful. Definitely also an issue I need to mention to others all the time that it's too noisy for me to hear them, even though for them it's not.

"I was yelling at them (without ever raising my voice)"

Oh God. I get that too. Obviously - hearing issues, I don't know I'm talking too loudly.

I apparently seem intimidating as well, and I don't know why.

However, to your points during lecture and during one-on-one's with students, I feel it's important for them to understand how my autism may present to them in terms of eye contact, facial expressions, tone of voice, and my insistence upon accurate/non-ambiguous communication.

I agree, it seems important to mention some communication differences that some people might not be able to understand.

On my own list of unusual communication behaviours is turning with my side to someone I'm talking to, but it's another result of my hearing issues, I try to expose one ear more, hopefully the better one.

So maybe you can tell the student that you have problems looking at people in the eyes because you're distracted -- or something like that. I told somebody once that I'm 100% visual, so I can't look at a person and think at the same time. I have to choose which one I do.

Oh, yes, this is what I plan doing. I'll just explain what it means and that it doesn't mean I'm angry at him or anything.

I relate to not recognising people and not taking hints as well. And to struggling to maintain any eye contact or body language when I'm tired, or even understanding what I'm being told if it's not one on one and in a quiet place.

 

[vergil96]

People who display these 7 traits intimidate others without realizing it

Have you ever met someone who seems to command attention and respect without even trying? They’re not necessarily loud or aggressive, but there’s something about them that makes others feel a little uneasy. Chances are, they possess certain traits that can be intimidating to those around...

geediting.com

That might explain being perceived as intimidating, I checked a lot of points
A random article from the internet came to help

 

[Au Naturel]

I operate strictly on a need-to-know basis. Very, very few people have a need. Definitely not employers. If you rub someone wrong, it can and will be used against you.

 

[Misty Avich]

It depends how autism affects you. I see every autistic person as an individual.

Personally I don't think I have ever disclosed my diagnosis, even to my partner. I have said to him that I have ADHD, and he figured out for himself that I have an anxiety disorder, but I prefer to just sweep the ASD thing under the rug. I'm just happier that way, because probably all my problems are related to anxiety, ADHD, agoraphobia and emetophobia. Any quirkiness about me my husband just accepts it as me.

The reason why I prefer to be closeted is because of the stress and trauma I suffered getting this diagnosis in childhood. It was very stressful for myself and my parents, and now I'm an adult I love pretending I don't have it (except when I'm on this forum).

 

[marc_101]

I operate strictly on a need-to-know basis. Very, very few people have a need. Definitely not employers. If you rub someone wrong, it can and will be used against you.

That is very true. It's my fear, too.

 

[Cryptid]

Once I was officially diagnosed (in my mid-fifties), I had the option of disclosing this to my employer at the time. The benefits might have included accommodations for sensory overload and stress management, while the hindrances would likely include ostracism, maltreatment, and being singled out as the company 'token' for handicapped status.

I kept the diagnosis to myself.

 

[MNAus]

I can only tell you my experiences.

My partner obviously has been along for the ride. She's been great, but I have noticed now that if I'm annoyed, stressed, upset it's nearly always seen as being caused by ASD rather than being a fairly normal reaction to a situation.

My younger kids (both primary school) are over the moon that dad is autistic too. Best thing ever to them because I can help them to not feel like freaks. Oldest is NT, and it's answered some questions for her on why dad was a bit odd, so I guess she's happy to know. Hard to tell at that age, it's all a bit dramatic.

I told my mum, and she's struggling with it. She's kind and sweet, but I don't think she really believes me. The topic of "why do we have to label everybody, why can't people just be themselves?" comes up on such a regular basis. I tried to broach it in a "hey, whaddya know? turns out I'm autistic too! Crazy huh?" way. I would guess my siblings will hear through this route, and TBH I'm not really bothered what they think (not that I don't care about them, I just don't need them to believe me at all)

Professionally it's a tough call. I've been heavily disadvantaged in my career because of autism. That much is clear. So maybe I should just tell everyone and get accomodations? Well, and with a note that this might offend people, my experience has been that if you're quirky, female, younger you're more likely to be taken as a poster girl for diversity. I have no idea if that brings any sort of financial or professional benefit, but on LinkedIn, for example, there will be hundreds of well wishers telling you to take on the world, "go girl", etc. I have a couple of acquaintances in a similar demographic to me (tired, middle-aged bloke) and their disclosure went down like a vet announcing they've euthanised your dog by mistake. Being diverse isn't as popular when you're the dad type, it's a bit uncomfortable, not cool. So I generally play my cards closer to my chest. I've had a couple of times where I've used it, mostly when I've been excluded from an event because "we want diversity". But again, they're hardly over the moon when you say "great, because I have a disability". More begrudging that they have to. Not really what they want for the "check out how diverse we are" photos.

YMMV. Good luck!

 

[vergil96]

I wonder also the other way round to the teaching, I still have a degree to finish and I might do a postgraduate degree or a course in the future as well. Namely, if I want to talk to the professors about difficulties I've been having. I got overstimulated again, so I don't feel like going anywhere if I don't need to. I spent a lot of time a few days ago trying to write an email explaining my difficulties and asking for some support, but I feel like I list all the symptoms of autism without saying the name autism, and on one hand it's easy to get a feeling from the email that there is a common reason behind all this and it has to do with mental health, so it could leave someone wondering, which isn't neccesarily good. It kind of does bring to my mind concerns of autistic people. Also I have the concern that my email is unclear and someone might get confused reading it as for what I exactly expect from them, my main concern is that they would think I'm looking for emotional support or for simplistic solutions. People tend to see sensory issues as less severe than they really are and offer advice such as "just eat" or "just focus in this noisy environment". To a degree, it's true that I strive for emotional support, reassurance. On the other hand, I think it would be better to be more specific in what I'm asking for but my problem is that I don't know what I should be asking for and in what form. I tried to write an email, because I'm not feeling okay recently and I have trouble leaving my flat, especially to commute, not just be in my neighbourhood which is relatively peaceful and I can fulfil all the basic needs within walking distance. I have zero idea how I should be communicating with the profs and it's hard to get heard in class, and when I'm tired it becomes too much. I can't just walk up to them and talk, I'm sorry, I don't always know how to interact face to face, especially when I'm not feeling fine. It's kind of hidden behind the fact that most of what I do is doing things on a computer. I wish there was someone to help students with disabilities, but I don't know of anyone like that. I'm ashamed to talk to random people at the university and wave the autism flag (as mentioned, most people don't even know what it actually means). Some of the time, someone is being hostile and I don't even know why. In retrospect and with the help of friends and family, I know later that maybe they were hostile, because they perceived what I said as too direct. But I can't help it in the given moment. I'm going to say something possibly wrong or not say anything at all. I think it's better to not give up. You can't overthink 100% of what you say, it's impossible. I mean, I wish there was someone who is less fussy. There is one proffessor with whom I get along and who is open to talking about problems, but I don't want to make fuss and bother her and take up her free time and put responsibility on her that she might not be able to or prepared to handle. It would be much better to not discuss such things in writing, but I can't hear through the phone well and I don't feel good enough to commute and then try to initiate a conversation IRL. When I'm not fine, I suffer from all kinds of communication problems, go nonverbal, miss all the cues, can't coorditane body language and facial expressions. I have a feeling like it might not appear to a professor that if usually this behaviour means I just hang out in class and want to be there but not actively interact (I frequently get tired and zone out to talk very enthusiastically later), that on a different occasion it might mean something completely opposite. She thinks I'm very social, but family members are used to the fact that I go nonverbal a lot of the time, it's not all that unusual or strange for me. I don't think it's a bad thing by itself, not everyone has to be a salesman, but I feel burdened by the assumptions that some professors are making and by how they portray what "normal" communication consists of. I don't know, maybe I'm just overthinking it and worrying too much, but the act of sending an email only builds up anxiety. Or in general haveing to walk up to someone and make fuss. I hate being the center of attention and I worry a lot about being misunderstood. It also can look like a lot of things without a torough diagnosis.

 

[vergil96]

Being diverse isn't as popular when you're the dad type, it's a bit uncomfortable, not cool.

Yeah, fair point. Not everyone is the kind of person who elicits compassion. I might not be either.