Thinking about telling my sister about my diagnosis - I'm scared

[AuroraBorealis]

Hi, up till now I've kept quiet about my diagnosis towards my family, and I don't know if I want to change that. However, I've been feeling rather stressed lately and more prone to meltdowns than usual. Today, for example, I had a meltdown in a post shop because there was a demonstration with tractors outside on the street who kept honking unpredictably and very loudly. I covered my ears and cried, I couldn't prevent it. It is quite unusual for me to have a meltdown "only" because of sensory input. Usually, I have meltdowns in social situations.
Up till now, I was very careful to never have a meltdown in front of my family, so I'm quite sure that they wouldn't suspect anything. They don't know much about mental health and their knowledge about autism is limited to toddlers who don't speak to people, and to one Asperger boy from the school my sister works at, who from her tales is very different to me.

I'm reconsidering about not telling my sister, though, since we're going to Bangkok, Thailand, together and there's the real possibility of me having a meltdown due to sensory input there. I don't think I would hope for much, I would just like her to know so I can comfortably stim, use headphones or earplugs if necessary or ask if we can leave the situation if it gets too much, and in case of a meltdown not having to explain in detail afterwards what my problem was. I've never done these things in front of my family, so it would be quite a big change to how things have always been, and my sister would be very confused in any case. I would just like to be able to deal with the sensory input during our journey without also having the stress of keeping it all a secret.

However, I'm very scared of telling her. I don't know how to bring it up, and much less how to explain my specific situation to her. I'm scared that her reaction will be incredulous and that she will say that it's not possible since I'm nothing like that kid at her school, or that "everyone thinks they have something nowadays", and all those awesome reactions (irony off). Especially in face-to-face contact, I could deal very badly with this. Usually, I prefer to tell people important news that might potentially hurt me via text. My sister's compassionate but also quite judgmental and has rather narrow views, and if you don't fit into these narrow views, she lets you know quite clearly. She wouldn't hurt me intentionally as a reaction, but the probability of her reacting hurtfully by accident and by impulse is quite high.
Also, I'm bad at summarizing stuff, so if she asked me to explain what exactly I have trouble with, I'd have real difficulty structuring my answer and bringing up everything that's important to me. I guess I could write it down before... But I'm just so scared and nervous. Once I tell her, I can't take it back and would need to decide if I want her to keep it to herself or if I want to tell my parents, too, who would react even worse.

On the other hand, I could just go on as I used to and keep it together as best as I can, but I'm afraid that my capacities for that are reaching their limit...

How did you guys tell your family members, especially those of you where it didn't end up with their family already suspecting it, but those who hid it as best as they could and where the family didn't suspect anything (if there are some others where that's the case)?
My sister and I are 25 (me) and 28 (her), so we're both adults.

Thank you for your thoughts!

 

[kriss72]

Well, my daughter and spouse, they knew, so I just texted them that it is now official, when I got it on paper, my mother also knew I was in the process as she came with input to how I was as a child. I also told a few friends by text - then some months later I just did a status update on facebook, so the rest of my family and friends who care about what I write found out I don't need people in my life that don't accept me for who I am.

 

[AuroraBorealis]

Well, my daughter and spouse, they knew, so I just texted them that it is now official, when I got it on paper, my mother also knew I was in the process as she came with input to how I was as a child. I also told a few friends by text - then some months later I just did a status update on facebook, so the rest of my family and friends who care about what I write found out I don't need people in my life that don't accept me for who I am.

That's great
Unfortunately, I'm not quite there yet with the whole self-acceptance thing. Also, my family relationship is quite difficult. They haven't been involved in my diagnosis and I haven't told them that I suspected it. To this day we never actually talked about my eating disorder as a teenager, although they must have known that something was going on, since I lived with them during the time. I love them and they love me, but we just don't really... talk about stuff like that. I just started talking about such stuff with my sister when we were both adults. I'm sure they try their best, but I always felt this distance towards them, like they just don't quite get me.
I'm just really scared of their reaction. By reacting badly, they can reduce me to a crumpled mess of anxiety and self-doubt without even realizing it.

 

[Suzanne]

For me, receiving a formal diagnosis, made it much easier to say I have Aspergers and no need to wonder how to tell my husband, because he was there, when I was diagnosed.

I do not have any communication with my family members, so no issue there.

The way you are describing difficulties, that was me BEFORE diagnosis. I felt a fraud, especially when ones would demand if I was sure etc? But now, I can hold my head high and say that yes, I have a formal diagnosis and that stops anyone from challenging me.

 

[marc_101]

Maybe you're seeing it a bit black and white. Tell or not tell, but what about a softer approach? Your concern is a meltdown traveling and stimming. Maybe you could try telling your sister that you have realized that you're less stressed if you can use headphones and avoid loud noises so she is not surprised. You can elaborate during the trip if necessary or if you're asked.

 

[kriss72]

Maybe you're seeing it a bit black and white. Tell or not tell, but what about a softer approach? Your concern is a meltdown traveling and stimming. Maybe you could try telling your sister that you have realized that you're less stressed if you can use headphones and avoid loud noises so she is not surprised. You can elaborate during the trip if necessary or if you're asked.

That is a good idea! Before I was officially diagnosed, but kind of suspected it my self, I just told people that I was very stressed (which was 100% true btw), so that was why I was e.g. carrying fidget toys with me, to calm me down

 

[AuroraBorealis]

Maybe you're seeing it a bit black and white. Tell or not tell, but what about a softer approach? Your concern is a meltdown traveling and stimming. Maybe you could try telling your sister that you have realized that you're less stressed if you can use headphones and avoid loud noises so she is not surprised. You can elaborate during the trip if necessary or if you're asked.

That's actually not bad advice. I've always tried to keep it together completely, enduring everything and later melting down by myself. I could think about which things would help me the most (like earplugs and keeping out of crowded shops) and just stick to those for the time being.
Thank you for the new perspective! Black and white thinking is sort of my weak spot when it comes to myself.

 

[AuroraBorealis]

For me, receiving a formal diagnosis, made it much easier to say I have Aspergers and no need to wonder how to tell my husband, because he was there, when I was diagnosed.

I do not have any communication with my family members, so no issue there.

The way you are describing difficulties, that was me BEFORE diagnosis. I felt a fraud, especially when ones would demand if I was sure etc? But now, I can hold my head high and say that yes, I have a formal diagnosis and that stops anyone from challenging me.

Receiving my diagnosis also made it easier for me, too. But I'm still struggling a lot with accepting those parts of me and of accepting certain limitations. Despite the diagnosis, I want to be able to handle everything, behave "like a grown-up" and "just pull myself together". A meltdown - or approaching one - always makes me very ashamed, because it feels like I'm being weak. I know that's in no way healthy or constructive, but up till now, it's just the way I'm wired. So I don't really have difficulties in accepting the diagnosis, but in accepting that I just have certain limits others don't.
It feels like with the people who know, I'm behaving "more autistic" now. Like, I fidget with DnD dice (great fidget toys, btw), I am more direct, I focus less on looking at their nose (instead of their eyes) and just look elsewhere, but I also have more sensory difficulties and am more prone to meltdowns, which is paradox, but which I explain by being more "open" to all these things, if that makes sense? Like, before, or with other people, I am so closed up that lots of stimuli just don't reach me, positive and negative ones. Like, the more comfortable I am with someone, the less I have up my wall, the more I actively experience my autistic traits and the harder it gets to ignore stuff that bothers me.
But that also leads to my fear that I would tell my family, act "more autistic" from then on because I try less to mask, and get the feedback that I'm just putting on an act because I never behaved that way before. If that makes sense.

 

[marc_101]

That's actually not bad advice. I've always tried to keep it together completely, enduring everything and later melting down by myself. I could think about which things would help me the most (like earplugs and keeping out of crowded shops) and just stick to those for the time being.
Thank you for the new perspective! Black and white thinking is sort of my weak spot when it comes to myself.

I don't have meltdowns but I have some serious shutdowns -- a type of meltdown I guess. I prefer not to provide explanations. I just mumble that I'm very tired and need to nap so I can run away. So use the "I'm tired" to get some time by yourself. Keep an open mind, though. These things are genetic so maybe your sister understands much more than you think. Everybody in my family on each side has some mental health or neuro problem...

 

[Gerald Wilgus]

Hi, up till now I've kept quiet about my diagnosis towards my family, and I don't know if I want to change that. However, I've been feeling rather stressed lately and more prone to meltdowns than usual. Today, for example, I had a meltdown in a post shop because there was a demonstration with tractors outside on the street who kept honking unpredictably and very loudly. I covered my ears and cried, I couldn't prevent it. It is quite unusual for me to have a meltdown "only" because of sensory input. Usually, I have meltdowns in social situations.
Up till now, I was very careful to never have a meltdown in front of my family, so I'm quite sure that they wouldn't suspect anything. They don't know much about mental health and their knowledge about autism is limited to toddlers who don't speak to people, and to one Asperger boy from the school my sister works at, who from her tales is very different to me.

I'm reconsidering about not telling my sister, though, since we're going to Bangkok, Thailand, together and there's the real possibility of me having a meltdown due to sensory input there. I don't think I would hope for much, I would just like her to know so I can comfortably stim, use headphones or earplugs if necessary or ask if we can leave the situation if it gets too much, and in case of a meltdown not having to explain in detail afterwards what my problem was. I've never done these things in front of my family, so it would be quite a big change to how things have always been, and my sister would be very confused in any case. I would just like to be able to deal with the sensory input during our journey without also having the stress of keeping it all a secret.

However, I'm very scared of telling her. I don't know how to bring it up, and much less how to explain my specific situation to her. I'm scared that her reaction will be incredulous and that she will say that it's not possible since I'm nothing like that kid at her school, or that "everyone thinks they have something nowadays", and all those awesome reactions (irony off). Especially in face-to-face contact, I could deal very badly with this. Usually, I prefer to tell people important news that might potentially hurt me via text. My sister's compassionate but also quite judgmental and has rather narrow views, and if you don't fit into these narrow views, she lets you know quite clearly. She wouldn't hurt me intentionally as a reaction, but the probability of her reacting hurtfully by accident and by impulse is quite high.
Also, I'm bad at summarizing stuff, so if she asked me to explain what exactly I have trouble with, I'd have real difficulty structuring my answer and bringing up everything that's important to me. I guess I could write it down before... But I'm just so scared and nervous. Once I tell her, I can't take it back and would need to decide if I want her to keep it to herself or if I want to tell my parents, too, who would react even worse.

On the other hand, I could just go on as I used to and keep it together as best as I can, but I'm afraid that my capacities for that are reaching their limit...

How did you guys tell your family members, especially those of you where it didn't end up with their family already suspecting it, but those who hid it as best as they could and where the family didn't suspect anything (if there are some others where that's the case)?
My sister and I are 25 (me) and 28 (her), so we're both adults.

Thank you for your thoughts!

Traveling, especially to a country with a fundamentally different culture and sensibility will be stressful. I think you need to have a heart to heart with your sister to have her recognize your autism to assist you in your travels.

 

[marc_101]

That is a good idea! Before I was officially diagnosed, but kind of suspected it my self, I just told people that I was very stressed (which was 100% true btw), so that was why I was e.g. carrying fidget toys with me, to calm me down

Haha. The "very stressed" and "tired" are still my most common excuses for my behavior. I do have an autoimmune problem so I use that too -- and my job can be very stressful for real.

Maybe one day I'll come out of the neuro closet, but sometimes people don't need much more than that.

 

[AuroraBorealis]

I don't have meltdowns but I have some serious shutdowns -- a type of meltdown I guess. I prefer not to provide explanations. I just mumble that I'm very tired and need to nap so I can run away. So use the "I'm tired" to get some time by yourself. Keep an open mind, though. These things are genetic so maybe your sister understands much more than you think. Everybody in my family on each side has some mental health or neuro problem..."

"I'm tired" is usually my go-to, as well. That, or "I need to study/do some work".

 

[Levitator]

I don't suggest discussing diagnoses with people, because I've seen that system wildly abused

Hi, up till now I've kept quiet about my diagnosis towards my family, and I don't know if I want to change that. However, I've been feeling rather stressed lately and more prone to meltdowns than usual. Today, for example, I had a meltdown in a post shop because there was a demonstration with tractors outside on the street who kept honking unpredictably and very loudly. I covered my ears and cried, I couldn't prevent it. It is quite unusual for me to have a meltdown "only" because of sensory input. Usually, I have meltdowns in social situations.
Up till now, I was very careful to never have a meltdown in front of my family, so I'm quite sure that they wouldn't suspect anything. They don't know much about mental health and their knowledge about autism is limited to toddlers who don't speak to people, and to one Asperger boy from the school my sister works at, who from her tales is very different to me.

I'm reconsidering about not telling my sister, though, since we're going to Bangkok, Thailand, together and there's the real possibility of me having a meltdown due to sensory input there. I don't think I would hope for much, I would just like her to know so I can comfortably stim, use headphones or earplugs if necessary or ask if we can leave the situation if it gets too much, and in case of a meltdown not having to explain in detail afterwards what my problem was. I've never done these things in front of my family, so it would be quite a big change to how things have always been, and my sister would be very confused in any case. I would just like to be able to deal with the sensory input during our journey without also having the stress of keeping it all a secret.

However, I'm very scared of telling her. I don't know how to bring it up, and much less how to explain my specific situation to her. I'm scared that her reaction will be incredulous and that she will say that it's not possible since I'm nothing like that kid at her school, or that "everyone thinks they have something nowadays", and all those awesome reactions (irony off). Especially in face-to-face contact, I could deal very badly with this. Usually, I prefer to tell people important news that might potentially hurt me via text. My sister's compassionate but also quite judgmental and has rather narrow views, and if you don't fit into these narrow views, she lets you know quite clearly. She wouldn't hurt me intentionally as a reaction, but the probability of her reacting hurtfully by accident and by impulse is quite high.
Also, I'm bad at summarizing stuff, so if she asked me to explain what exactly I have trouble with, I'd have real difficulty structuring my answer and bringing up everything that's important to me. I guess I could write it down before... But I'm just so scared and nervous. Once I tell her, I can't take it back and would need to decide if I want her to keep it to herself or if I want to tell my parents, too, who would react even worse.

On the other hand, I could just go on as I used to and keep it together as best as I can, but I'm afraid that my capacities for that are reaching their limit...

How did you guys tell your family members, especially those of you where it didn't end up with their family already suspecting it, but those who hid it as best as they could and where the family didn't suspect anything (if there are some others where that's the case)?
My sister and I are 25 (me) and 28 (her), so we're both adults.

Thank you for your thoughts!

I don't suggest discussing your diagnoses with anyone, because I've seen that system abused. It is indeed a system, it doesn't offer the same protections as a courtroom, and if its opinion turns against you, you are in trouble and you are not even the last one who is granted permission to resolve it. I share that I'm sure that I have autism because I absolutely cannot connect with people, and I have several other very distinct traits. The difference is; don't go intimating the internals of your relationship with a soulless and abusable system. You just told the world that you have a psych doc, and you told it what he thinks of you, so now they can distort his own story and feed it back to him to influence your treatment. Don't do that to yourself. The world doesn't like us because we perturb what they otherwise take for granted, and they seldom like what they see.

 

[AuroraBorealis]

Thank you for all of your answers, they were definitely helpful. I think I'm going to stick to marc_101's advice for now - be more open about what I need, without overthinking the telling her the diagnosis thing. Some things she does know already. For example, we discussed the trip just now and she herself said that maybe we don't want to go to this certain place because it might be too crowded for me. I found that very considerate.

 

[Levitator]

You think people have limits imposed by shame, and you find out that you're mistaken,and that they're willing to terrorize people who naturally communicate poorly, and in bizarre ways so that when they tell it, they get abused more. This planet sickens me. It's like torturing an armless person with karate, or slandering someone who can't talk, so that the world descends on them for things that aren't true, and all they can do is yell like an idiot, which only encourages more abuse. Their ethics have no bottom. I'm aware I look and sound like an idiot to people. I don't care. I'm not going to characterize how they behave, which counts a lot more.

I don't understand how the stuff I've seen is even possible. I can write, I can speak, but people think I look stupid when I'm doing it, so they happily let the entire world steamroll me.

 

[AuroraBorealis]

You think people have limits imposed by shame, and you find out that you're mistaken,and that they're willing to terrorize people who naturally communicate poorly, and in bizarre ways so that when they tell it, they get abused more. This planet sickens me. It's like torturing an armless person with karate, or slandering someone who can't talk, so that the world descends on them for things that aren't true, and all they can do is yell like an idiot, which only encourages more abuse. Their ethics have no bottom. I'm aware I look and sound like an idiot to people. I don't care. I'm not going to characterize how they behave, which counts a lot more.

I don't understand how the stuff I've seen is even possible. I can write, I can speak, but people think I look stupid when I'm doing it, so they happily let the entire world steamroll me.

I'm sorry, I don't quite understand what you mean. I got from your previous message that you advise me not to tell my sister, and I appreciate your input. But I don't understand this message. Could you clarify? Or do you simply need to blow off some steam about general problems in the world? (Which would be completely fine too)

 

[Judge]

It's always a calculated risk to come out about one's autism. Regardless of the person you choose to tell.

Often with unpredictable, and unwanted results. Emphasis on the pragmatism of keeping it on a "need-to-know" basis, short of a significant other or spouse.

Though so many of us can relate to how crushing it can be when a close relative just doesn't get it, or doesn't want to.

 

[Levitator]

I'm sorry, I don't quite understand what you mean. I got from your previous message that you advise me not to tell my sister, and I appreciate your input. But I don't understand this message. Could you clarify? Or do you simply need to blow off some steam about general problems in the world? (Which would be completely fine too)

I hope you have a close and trusting relationship with your sister and that you can share personal things with her. It's the public and the Internet where it's not safe to share your treatment situation, because that information is exploitable by malicious people. I've seen it done, and there is a long history of that behavior, both by governments, and by family members who simply decided that their eccentric relative needed to be brought to heel.

 

[Levitator]

It's always a calculated risk to come out about one's autism. Regardless of the person you choose to tell.

Often with unpredictable, and unwanted results. Emphasis on the pragmatism of keeping it on a "need-to-know" basis, short of a significant other or spouse.

Though so many of us can relate to how crushing it can be when a close relative just doesn't get it, or doesn't want to.

I actually hate to share about my situation, but I literally have no life. I need something to bond over or to represent a criterion for meeting mutually compatible people and there's literally nothing left but to show some humility and be like "Ok, I inherently don't meet the standards for normal socialization, who else is like that, so that we can hang out and show a bit of give and tolerance?"

 

[marc_101]

Thank you for all of your answers, they were definitely helpful. I think I'm going to stick to marc_101's advice for now - be more open about what I need, without overthinking the telling her the diagnosis thing. Some things she does know already. For example, we discussed the trip just now and she herself said that maybe we don't want to go to this certain place because it might be too crowded for me. I found that very considerate.

Please keep us posted and send pictures

I hope you are not too tired during the trip. ;-)