Is it right to be worried about disclosing autism diagnosis?

[Misty Avich]

Some mental illness is quite "in" where I come from, such as bipolar and depression. But autism seems to be "uncool" and it can feel awkward or even embarrassing to mention it to people. So I just say I have anxiety and ADHD, as it just feels less awkward, and it's true anyway.

 

[vergil96]

Some mental illness is quite "in" where I come from, such as bipolar and depression. But autism seems to be "uncool" and it can feel awkward or even embarrassing to mention it to people. So I just say I have anxiety and ADHD, as it just feels less awkward, and it's true anyway.

I have seen some people being open even on social media like facebook about their autism. I don't understand their perspective, in the sense, it's totally valid what they do if they feel it's right for them, but I don't understand the thought process behind it. Even without being diagnosed with it, I have been told things such as "you have Asperger's, you don't get it" or the experience in kindergarden with caretakers was just ugh. I mean, sure, I was a child on the autism spectrum, didn't know how to socialise, make friends and the such. It doesn't mean I'm not capable of going to school or having a normal life, it's prejudice. I have the impression that the person who said it made her judgement only based on her perception of body language.

 

[RemyZee]

I've had mixed reactions when I disclose. I went through a phase, just after being diagnosed at 43, where I was telling everybody: "I'm autistic!" I wrote about it on social media, told my family, told people in the community. I think it irritated people. When I disclosed to one woman, she used the phrase, "anyone unfortunate enough to have autism." Another time, a woman I disclosed to told me she was afraid of me because of autism. What???? I can never be sure how people perceive me, but I would definitely say I am NOT exactly someone people would find scary. Other times, disclosing was a very positive experience. My current job, for instance, where it's all disabled people working there: no one seems to mind when I'm public about it. I'm believed and given accommodations. But I find it's always a risk, and at times the response is totally not what I expect. I don't go around disclosing autism to whoever now, but when it's needed or when there's some reason. I will add to what others are saying: as I get older, it's more difficult all the time to conceal autism, so I disclose because eventually people start asking questions, sensing differences. They instinctively start filling in the blanks with whatever strikes their imagination--good or bad, so for self-preservation I'll use my elevator speech so they won't be surprised. I'm not great at disclosing though--it means talking about autism, and it's so hard to quantify it. I've started thinking that, and maybe I'm wrong on this, that it's similar to coming out as LGBTQ. People respond very differently, but it's about identity partly and people realizing it about themselves...realizing it's who they always were and bringing themselves into the picture. As a younger person, I was really ashamed of how I looked, how I acted, how people encountered me, the things I liked, and how I thought, so I spent hours trying to present myself as neurotypical. I was really bad at it though, which is to be expected....as many of us here have experienced, there was absolutely zero understanding of autism when I was coming up. I can't even remember anyone ever even using the word around me. People just didn't know what it was. To disclose difference was really dangerous because where I lived people who were different were punished, and how could anyone disclose anyway when they didn't even know what they were disclosing! You just went around knowing something was so very different, but not knowing what it was. On the other hand, there are impacts of NOT disclosing--it is exhausting to pretend all the time.

 

[vergil96]

Another time, a woman I disclosed to told me she was afraid of me because of autism. What???? I can never be sure how people perceive me, but I would definitely say I am NOT exactly someone people would find scary.

Strange. I think communication deficits and differences can be perceived as "scary", but the concept of someone having autism? That's strange.

so I disclose because eventually people start asking questions, sensing differences. They instinctively start filling in the blanks with whatever strikes their imagination

I also find it to be the case that people can fill in the gaps with something not exactly accurate. That's one of the reasons why I'm wondering.

 

[vergil96]

I feel like I'm wearing an "autism" stamp on my forehead sometimes, but it's different from actually saying you have a diagnosis = problems because of it. It's accepted that some people can behave in an autistic manner, but having a problem is an entirely different story.

 

[Misty Avich]

It's not always about how other people will react, it's just how I feel about it inside. I've always been ashamed of it, for reasons I've probably explained already in this thread or elsewhere. I guess shame is my biggest obstacle. I even told the doctor off for mentioning it when I went to see her about my nausea the other day. She said the ugly word "Asperger's" as she was looking at my medical records, and I winced and had to look away and uttered "oh, please don't say that word." I just don't want to be known by it.

 

[thejuice]

Another time, a woman I disclosed to told me she was afraid of me because of autism. What????

That's really passive aggressive!

 

[thejuice]

@vergil96 did you ever disclose autism to your university tutor? It seems like it's having a huge impact on your studies and you need accomodation and proper understanding if things don't go smoothly.

 

[vergil96]

@vergil96 did you ever disclose autism to your university tutor? It seems like it's having a huge impact on your studies and you need accomodation and proper understanding if things don't go smoothly.

Disclaimer: I'm from Poland, not the UK or US or a different English-speaking country. Hence I'm not exactly sure what "tutor" means in this context, but I don't think we have someone like that, who takes care of students and stays up to date with them. There is no disability office either, at least none that I know of. There is just a psychologist who gets offended and whose replies aren't or topic. There is also deanery - they deal with formal requests. At least this is the case at my university. The professor I meantioned in this thread is just a professor I get along with and who is open to talking about different things. I have worries I have already mentioned that she might not have the competences to deal with it. I did mention to her some of my problems, with abscences, and asked what to do.

 

[Chailatte_]

In everything, I believe people's responses depend on their level of information. Take the same "theme," for example, with different sources of information: if one person gets their information from source X, they will base their response on X as their sole source of information on that topic. If another person for the same topic uses source Y, they'll base their response on Y.

What happens then? We find ourselves in the fortunate and unfortunate position of having a wealth of information at our fingertips, but not all of it is accurate or valid. X and Y might be valid sources for some, while for others, they might be offensive, reductive, or entirely wrong—it all depends on whom you ask and especially how you receive that information.

Therefore, beyond these basic variables that affect us all, I don't openly talk about my diagnosis unless it's strictly necessary for me (for example, for school or with a very close person). The rest of the people's opinions are not my problem. The variables X and Y are applicable to every single concept around us, and honestly, going to someone who thinks so while I might think C is not worth my time.

This is because we often deal with variables X and Y that are deeply rooted, handed down, or stereotyped by society. The real question isn't: will I feel ashamed or looked down upon, but rather: is it really worth my time to fight against such a deeply ingrained concept? Is the person in front of me willing to look at/receive my information? In terms of emotional efforts and personal viewpoint: "Do I gain anything?" "Or do I lose?" And "What am I willing to change about my perspective if it's the opposite of the other person's?" These simple questions make all the difference. I calculate all my efforts and exchanges of information based on the time I spend; if it's worthwhile and brings a positive outcome, I proceed. Otherwise, I move on and let it go.

 

[Judge]

Frankly I believe such concerns ultimately depend on where you reside. Accepting the reality that some societies are more advanced than others when it comes to how and whether the public and government deal with autism.

As an American living in the United States, such concerns leave me with posting something I have mentioned many times in this forum. To keep your autism on a "need-to-know" basis only, unless you are seeking government entitlements that require formal assessment and documentation of your autism, making it a matter of record. Which potentially could help you or hurt you depending on the circumstances. With no guarantees of being free of discrimination on multiple levels. Worst of all being the potentially negative and unintended responses one may receive from their own family.

Then again if you were in another nation such as the United Kingdom or Australia and others, I'd say your society and infrastructure are much better suited to catering to autistic citizens in comparison. At least it appears that way from my own perspective.

 

[Au Naturel]

Frankly I believe such concerns ultimately depend on where you reside. Accepting the reality that some societies are more advanced than others when it comes to how and whether the public and government deal with autism.

As an American living in the United States, such concerns leave me with posting something I have mentioned many times in this forum. To keep your autism on a "need-to-know" basis only, unless you are seeking government entitlements that require formal assessment and documentation of your autism, making it a matter of record. Which potentially could help you or hurt you depending on the circumstances. With no guarantees of being free of discrimination on multiple levels. Worst of all being the potentially negative and unintended responses one may receive from their own family.

Then again if you were in another nation such as the United Kingdom or Australia and others, I'd say your society and infrastructure are much better suited to catering to autistic citizens in comparison. At least it appears that way from my own perspective.

The US always leaves me feeling more paranoid about such things than another country might. We seem to be looking for more reasons to hate each other.

 

[thejuice]

Frankly I believe such concerns ultimately depend on where you reside. Accepting the reality that some societies are more advanced than others when it comes to how and whether the public and government deal with autism.

As an American living in the United States, such concerns leave me with posting something I have mentioned many times in this forum. To keep your autism on a "need-to-know" basis only, unless you are seeking government entitlements that require formal assessment and documentation of your autism, making it a matter of record. Which potentially could help you or hurt you depending on the circumstances. With no guarantees of being free of discrimination on multiple levels. Worst of all being the potentially negative and unintended responses one may receive from their own family.

Then again if you were in another nation such as the United Kingdom or Australia and others, I'd say your society and infrastructure are much better suited to catering to autistic citizens in comparison. At least it appears that way from my own perspective.

Why is it worse for an autistic in the US?

 

[vergil96]

Then again if you were in another nation such as the United Kingdom or Australia and others, I'd say your society and infrastructure are much better suited to catering to autistic citizens in comparison. At least it appears that way from my own perspective.

I have the impression that Poland is more similar to the US in terms of equal rights and social welfare. There are less legal protections in general than in, say, the UK, Germany, Australia and less possibilities for social welfare. On the other hand, taxes are lower. It's hard to say which mode of operation is better. For someone vulnerable, a welfare state is better. If you're not a part of a vulnerable population, it very much depends. I want to move abroad at least for some time after I graduate and see out of curiousity what it's like in different countries. I want to travel to different places on vacation as well.

Also, having autism with the lower support needs doesn't mean you're a vulnerable member of the society, will have financial problems. Again, it very much depends on a lot of factors. One person with ASD-1 will be a rich specialist, and another, forced to work in customer service by their skill set, will be struggling to get by. With workplace protections, again, it depends very much on the workplace. The more international the company, the better they are about handling worker's rights. Local ones are worse. But then it also depends - you can be self-employed or work in a small very specialised firm with a few other specialists. I'm lucky to not be financially vulnerable, but it doesn't mean my life is free from problems, including serious ones.

Then, I think, there is the interpersonal aspect - is a given workplace friendly? As in, are there decent people in this particular group? Or are they not decent? It can't be measured, can't be told from whether the company is international or local, can't be enforced by law. There is a saying "Give me a person and I'll find a paragraph" - how the law is used is a matter of intention. If someone is a jerk, they'll make up a reason or even will engage in fabricating situations and evidence to prove their point. It's not like if there is legal protection, things are necessarily going to be fine, or that if there is none, you won't be fine. It's hard for me to tell where the differences really lie or if it's a question of the country and its legal system, a lot of what people write on the internet involves getting diagnoses and bringing them to the employer - otherwise they can't get a peaceful place to sit or someone takes an issue with them doing office work in headphones. It's a problem I've never encountered or... I've just fled places like that based on bad subjective experience. It sounds very cold, institutionalised to have to deliver a diagnosis to get a place you find comfortable to sit in. In places I've spent time in, all you need to do is ask. But then - maybe it's not a question of country, but of autistic people having a hard time communicating their needs to others? Maybe there is no need for a diagnosis to do that, but someone finds it easier to leave a note than to have a conversation and add to it the rigid thinking style - it needs to be formal and from a professional?

So to sum up - it's hard to tell for me where the issue is exactly and what is the right thing to do.

 

[vergil96]

I don't openly talk about my diagnosis unless it's strictly necessary for me (for example, for school or with a very close person).

How do you make the information not leak? E.g. to university staff you don't want to know it or peers.

is it really worth my time to fight against such a deeply ingrained concept?

Fair point.

You're making a lot of good points.

In this light, yeah, the reason why I'm thinking about it is that I'm having difficulties, that could be potentially addressed, but I don't know how to address them. So this is the positive outcome I would expect - someone would help me clarify what my possibilities are and I'd get help. The potential negative outcomes I've already described - discrimination of some sort, stereotyping. I think you make a fair point about the perceptions - I'm not a typical case of autism, and I don't have the social difficulties that seem to get the most attention even among mental health professionals, but I have a number of sensory issues and I have a hard time functioning without a daily routine, or with large changes in routine, which has been the cause of my problems at university. It also seems like I have communication problems with some of the professors, who don't seem to take into account that poor eye contact might not mean someone doesn't want to interact with them - especially if the person doesn't come across as socially awkward at first glance.

 

[Judge]

Why is it worse for an autistic in the US?

Many, many negative issues prevail for any number of social minorities in America. In the case of autistic people, for starters it's a condition the vast majority don't understand compounded by a combination of stigmatization and indifference. Those who don't know anyone who is autistic and subsequently don't care.

Further compounded by those who only attempt to rationalize the struggle of autistic people relative to age. As if it were an issue only regarding children that ends at adulthood. Not recognizing that autistic children grow up to be autistic adults. With Hollywood stereotypes often making up the difference in what the public thinks they know about autism.

Then consider the political divide of those who do not support the very concept of our nation as a modern welfare state. Where adequate medical care remains available only for those who can afford it, often based upon privatized healthcare insurance allowing it in consideration of policy provisions and limitations with endless copay (fixed, out-of-pocket payment) provisions. Something continually demonstrated every year locally when physicians offer their services at no charge, with lines and lines of people who the media polls only to discover most of them are insured, but cannot actually use their coverage given expensive copays. Where for a number of citizens means only using their insurance in the most dire circumstances.

And for those who simply cannot support themselves in this society, it's an uphill battle in general for anyone with a perception of disability to seek government entitlements. One that usually requires the skill and fees of professional legal support to secure entitlements, assuming of course bureaucrats acknowledge their eligibility. In a system crafted to deny applicants to contain government costs. And in the case of autism, it remains an ambiguous process of diagnostics to determine whether one is truly eligible at a threshold often reflecting ASD level two or three.

And then there's the matter of employment of autistic people in a system that doesn't objectively protect them under provisions such as the American Disability Act, let alone protect them from discriminatory practices of employers. Where for a few they may actually receive help in the workplace, and for others lawful or unlawful termination.

All potentially making a matter-of-record diagnosis of autism more like a "scarlet letter" for people seeking aid, let alone who want to serve in the workforce. When a professional medical diagnosis of autism becomes a calculated risk more than a cry for help or a plea for understanding.

 

[Chailatte_]

How do you make the information not leak? E.g. to university staff you don't want to know it or peers.

As far as I know, at least in my experience, teachers are bound by professional confidentiality. If you feel the need for one of your teachers to be aware of your situation, take them aside and explain it to them, but be mindful that they might discuss it among themselves (it all depends on whom you tell and whether they fulfill their teaching duties, which should include respecting professional secrecy and student privacy).

This brings us to:
Are you willing to provide "documentation" to the teacher in question? When you share personal information and want the recipient to receive it without misunderstandings or jump to personal conclusions, you need to ensure you're ready to "educate" them about your situation/topic. In a way, it's your responsibility to prevent any confusion and avoid leaving the person to their own devices. So, are you giving them a box with a puzzle? Teach them how to put the pieces together, not just by showing them the picture to follow but by giving them detailed instructions on how you want the puzzle to be completed.

This leads us to a "landing pad" that will be "softer or harder" depending on how you've handled the above point.
What's the cost if all teachers find out?
If you've managed everything well: by this point, you should conclude that the loss is less than the gain, hence having paranoia/anxieties that can be managed by the rationality of your conscious explanation. You should be able to address your doubts or fears based on the puzzle and the instructions you've provided to the teacher.

 

[Judge]

As far as I know, at least in my experience, teachers are bound by professional confidentiality.

Just curious. When you refer to "teachers", does that formally include administrators as well?

 

[Chailatte_]

How do you make the information not leak? E.g. to university staff you don't want to know it or peers.


Fair point.

You're making a lot of good points.

In this light, yeah, the reason why I'm thinking about it is that I'm having difficulties, that could be potentially addressed, but I don't know how to address them. So this is the positive outcome I would expect - someone would help me clarify what my possibilities are and I'd get help. The potential negative outcomes I've already described - discrimination of some sort, stereotyping. I think you make a fair point about the perceptions - I'm not a typical case of autism, and I don't have the social difficulties that seem to get the most attention even among mental health professionals, but I have a number of sensory issues and I have a hard time functioning without a daily routine, or with large changes in routine, which has been the cause of my problems at university. It also seems like I have communication problems with some of the professors, who don't seem to take into account that poor eye contact might not mean someone doesn't want to interact with them - especially if the person doesn't come across as socially awkward at first glance.

Indeed, weighing the pros and cons is crucial. Yet, it's important to differentiate between fears/anxieties within your control versus those embedded in societal perceptions or another person's biases. These fears are valid, but they're not something you can fight against; they require a healthy dose of indifference. Understand that everyone, regardless of their intentions, will form opinions and judgments beyond your control. What you can manage is your response to such situations. Developing a healthy indifference and following your path is key. Don't let anyone's differing views diminish your self-worth. Be proud of who you are and your achievements!

I know the stereotypes surrounding autism can be soul-crushing, but those who utter or insinuate such things reveal more about themselves than about you. They're often ignorant or lacking sensitivity and education, deserving more pity than anger. I've learned to pity bullies and recognize them for what they are. If someone disrespects or makes baseless insinuations about me, I understand it's because they are:

1. Ignorant, thus I pity them.
2. Envious, not worth my time.
3. Frustrated, looking to vent on someone and waiting for a confrontation (I ignore; I don't have time to waste).
4. Angry and sad, not knowing how to deal with their issues and hiding behind mean comments (reflecting their self-image on you).
5. A follower, not thinking for themselves and repeating hearsay (again, I feel pity and disregard).

This is a broad categorization I apply. It's important to listen to others, yes, but only those who matter to you and whose opinions are meant to be constructive, not destructive. The world is full of bullies but also people who are misinformed, not intending harm. It's right to guide those seeking information and ignore those looking for a fight.

 

[Chailatte_]

Just curious. When you refer to "teachers", does that formally include administrators as well?

In Italian, "teacher"(=maestro/professore) refers to a teacher/professor. I'm not sure what you mean by "administrator" (perhaps a principal/director?). I imagine that school roles can vary depending on where you live.