Should you tell them?

[daniegirl6224]

Is there anyone that wishes they never found out about their autism?
If you know someone who you suspect has autism, should you tell them? When is it appropriate to tell them versus not tell them? If you should tell them, how do you best go about this?
Thank you

 

[Outdated]

My father is as autistic as I am, and I'd dearly love to be a fly on the wall listening when someone tries to tell him so. He'll argue all the way to his grave.

If they are people you have a very good close relationship with then you could try to introduce the topic a little at a time, phrase it as talking about your own experiences and let them draw their own conclusions rather than giving them a confronting idea straight off the bat.

A side note: I'm glad I knew nothing about autism when I was young, especially as I was becoming an adult. That's a pretty tough time for teenagers and just like any other teenager if there was a handy crutch like "It's not my fault, I'm autistic." I probably would have leant on that crutch a lot and not become as free and independent as I am.

 

[AprilR]

I am very glad that i learned about autism. They say ignorance is bliss but it was not the case for me. When you dont know about autism you blame yourself for things outside your control

My father is also autistic, but i have never thought about telling him. He is already in his 70s and has a pretty much stable life. I feel like it would trouble him if i were to tell.

 

[Neonatal RRT]

Is there anyone that wishes they never found out about their autism?
If you know someone who you suspect has autism, should you tell them? When is it appropriate to tell them versus not tell them? If you should tell them, how do you best go about this?
Thank you

1. I was seeking answers and found them. I was thankful.
2. I have a co-worker with a young adult son with autism. She was the one who was asking me if some of her son's behaviors and mine were similar because I was male, or was it autism. She had me take the online "Aspie Test" for "fun". Sneaky, but it worked.

I know that some people, usually younger people, teens and young adults, tend to reject the idea of somehow being "different". After all, they've spent their entire lives trying their hardest to fit in and be like others. For some, it's like have the rug pulled out from under them. Some may have degrees of denial and never seek a psychiatrist or psychologist due to some mental stigma. Some overcome that mental hurdle and when they finally do see a mental health professional, they receive the diagnosis of autism, much to their surprise, because they were convinced it was "something else". They can become distressed or even reject the diagnosis.

Everyone is different, but I think, instead of being direct, you might more indirect, for example, how my co-worker approached the subject with me. Then for "fun" have them take one of the online tests to make them question themselves. Later, if they choose, seek out a professional who could do further testing and diagnosis.

 

[Misty Avich]

Is there anyone that wishes they never found out about their autism?

Yes. Or at least not have told everyone else as well. And I mean everyone else, including my whole class at school. I hated being the kid with the label.

If you know someone who you suspect has autism, should you tell them? When is it appropriate to tell them versus not tell them? If you should tell them, how do you best go about this?
Thank you

I wouldn't advise against telling people, especially adults. If it had been suggested to me as an adult or even maybe my teens, I might have taken it differently. But being lumbered with endless appointments, assessments, social workers coming to my house, etc, as a young child (around 8 years old but it didn't end there) was rather traumatizing and I feel like it's all I've known. And now to discover that 99% of high-functioning Aspies like myself don't get diagnosed until adulthood (even millennials or younger who grew up when autism was more known about), it makes me feel even more angry, as I could have lived a normal life without being singled out with a label as a kid if the stupid school had kept their mouths shut and left me alone.

 

[TBRS1]

These are the rules about speaking that I try to follow (Buddhist "Right Speech," #3 from The Eight fold Path):

1. Only speak when conditions suggest you should speak
2. Only speak truthfully
3. Only speak when you have something to say that will be of benefit
4. Always speak in ways that can be understood
5. Only say it once (if you said it truthfully, when conditions suggest is appropriate, and if it is beneficial, then saying it more than once is being argumentative)
6. Never go on the battlefield (arguing is not right speech); being of benefit isn’t about winning

My personal experience is that when unqualified people tell me about my psychological self, there's a 70% chance that they will do it as a thinly disguised insult.

Don't do that. Be one of the other 30%.

 

[AprilR]

Yes. Or at least not have told everyone else as well. And I mean everyone else, including my whole class at school. I hated being the kid with the label.

I wouldn't advise against telling people, especially adults. If it had been suggested to me as an adult or even maybe my teens, I might have taken it differently. But being lumbered with endless appointments, assessments, social workers coming to my house, etc, as a young child (around 8 years old but it didn't end there) was rather traumatizing and I feel like it's all I've known. And now to discover that 99% of high-functioning Aspies like myself don't get diagnosed until adulthood (even millennials or younger who grew up when autism was more known about), it makes me feel even more angry, as I could have lived a normal life without being singled out with a label as a kid if the stupid school had kept their mouths shut and left me alone.

@Misty Avich
I don't mean to invalidate your experience, but i lived without a diagnosis all my life and it was filled with trauma all the same. I was always shunned and never had any friends at school. People never treated me as "normal"
So i felt like i was evil and defective, that my personality was awful and thought i should be more kind, accomodating etc. to the point people took advantage of me.

Again not trying to invalidate your experience at all, in fact when i was younger i was glad i can mask so well and nobody considered i was autistic. But the grass is not really greener on the other side either.

 

[Judge]

Is there anyone that wishes they never found out about their autism?
If you know someone who you suspect has autism, should you tell them? When is it appropriate to tell them versus not tell them? If you should tell them, how do you best go about this?
Thank you

To me it's much like substance abuse. That while you might stage an "intervention" of sorts, it's ultimately up to the person in question as to whether or not they want or are willing to explore the possibilities of their own autism. A "journey" that must be traveled alone.

So for me personally, I'd be reticent to want to suggest to someone they may be on the spectrum. Though it wouldn't preclude me attempting to imply it through other means, which admittedly could still potentially be problematic.

I still have a keen recollection of my own quest for the truth in terms of who and what I am, neurologically speaking. And that it was anything but a linear process for me to discover my own autism. More a matter of traveling down a very bumpy road strewn with potholes. Translating into a great deal of denial and skepticism at first. Me autistic? It can't be!

Yet the whole idea of it all kept nagging at me deep inside. Eventually I came to terms with it all, and that was when I began to search for online communities like this one to reach out to those who may be "my own kind". One of my better ideas!

Though even today it can be agonizing just to hear of someone talking about another close to them who is most likely on the spectrum, but refuses to act on it. Reminding me of how different my life might have been had I known much earlier in my adulthood.

 

[Misty Avich]

I think I just feel like my experience was different to everyone else's on the spectrum because I feel like the only one who got diagnosed so early despite being atypical for an Aspie and lacking common symptoms such as special interests, repetitive behaviours and communication deficits. Those are the core symptoms of autism. I just had anxiety (some children can have anxiety even if they're not on the spectrum and my mum had anxiety and depression so I think I inherited it from her) and some sort of school phobia during my first couple of years of school, but after that I settled in well, had friends, didn't feel different at all. But the stupid social services became too obsessed with the school phobia I had outgrown and made me feel like a bug under a microscope and writing down everything I did in the classroom. I still have those reports, though I threw some away because they brought back too many bad memories.
I also struggled with my hearing, as I had a lot of ear infections and had glue ear, which often caused me to become temporarily deaf, and that upset me because I wanted to hear what was going on but couldn't, and it made me feel isolated. And on top of that I had undiagnosed ADHD, which I'm surprised the dumb stupid social services missed.
So the glue ear and ADHD and anxiety disorder probably all contributed to any odd behaviours I did show, like throwing tantrums at school (which I grew out of by age 6). I would kick and scream if I didn't want to do something or if I was in a panic, not frequently though, but I did it as a way of manipulating. I learnt by age 6 that kicking and screaming is just embarrassing and doesn't get you what you want at school.

But everyone here seems to have been diagnosed late. Is there anyone here (who didn't have speech delays or anything) actually get diagnosed under the age of 14? Because I feel there isn't, except for the more severe folk who learnt to talk late. I didn't learn to talk late. I reached all my milestones on time, even potty training was easy. My mum said I was out of diapers at 22 months, and dry every night by age 4.

 

[Masked Man]

Is there anyone that wishes they never found out about their autism?
If you know someone who you suspect has autism, should you tell them? When is it appropriate to tell them versus not tell them? If you should tell them, how do you best go about this?
Thank you

I feel like I have to approach this question in two parts:

1. Not me. I prefer to have this knowledge. It explains my condition, my symptoms, and I know why I have the issues that I do. It does not remove the problem but I know why it is happening and I can adjust/plan for it. It also removes the "failing" feeling I would have. It is not my fault, it is rather a medical/developmental condition.

2. This one is trickier. My opinion is that if someone is not a trained medical professional, they should be very careful about making a diagnosis on someone else. There are people who have traits commonly attributed to autism, but they are not autistic. I feel like someone would have to know the other person very well first, and also be very knowledgeable, before opening their mouth and making an armchair diagnosis.

 

[Misty Avich]

I do worry about telling people straight up about my ADHD in case they think I want to be let off things, like at work. My ADHD affects my work life a lot and I often find myself being impulsive or making stupid mistakes and then being in trouble for it, and then I get frustrated with myself and feel like I've failed myself, my colleagues, my boss, and the company. I feel like I should just tell my boss that I have ADHD and that I can find it difficult to get myself motivated sometimes, but that just sounds like I'm looking for excuses to not do work. But that's not it at all. If I'm given a task or I know there are tasks that need doing then I go off and do them, rather well actually. I also like being busy and often express passion in my work and do a good job. But sometimes when there are quiet periods and I'm having trouble finding things to do, I can get distracted and find myself wandering off, talking to others, or sitting down checking my phone or whatever. Generally this is what everyone does but I seem to be caught out more, which is so embarrassing. But it's not because I want to be a lazy slob. I just find it difficult sometimes to get myself motivated to find tasks to do during quiet periods of the shift. My brain just turns to slush and I sometimes feel emotionally fatigued. I'm not proud of it. But if I explain that I feel like a snowflake wanting to be treated differently.

You can't win really.

 

[Judge]

I think I just feel like my experience was different to everyone else's on the spectrum because I feel like the only one who got diagnosed so early despite being atypical for an Aspie and lacking common symptoms such as special interests, repetitive behaviours and communication deficits. Those are the core symptoms of autism. I just had anxiety (some children can have anxiety even if they're not on the spectrum and my mum had anxiety and depression so I think I inherited it from her) and some sort of school phobia during my first couple of years of school, but after that I settled in well, had friends, didn't feel different at all. But the stupid social services became too obsessed with the school phobia I had outgrown and made me feel like a bug under a microscope and writing down everything I did in the classroom. I still have those reports, though I threw some away because they brought back too many bad memories.
I also struggled with my hearing, as I had a lot of ear infections and had glue ear, which often caused me to become temporarily deaf, and that upset me because I wanted to hear what was going on but couldn't, and it made me feel isolated. And on top of that I had undiagnosed ADHD, which I'm surprised the dumb stupid social services missed.
So the glue ear and ADHD and anxiety disorder probably all contributed to any odd behaviours I did show, like throwing tantrums at school (which I grew out of by age 6). I would kick and scream if I didn't want to do something or if I was in a panic, not frequently though, but I did it as a way of manipulating. I learnt by age 6 that kicking and screaming is just embarrassing and doesn't get you what you want at school.

But everyone here seems to have been diagnosed late. Is there anyone here (who didn't have speech delays or anything) actually get diagnosed under the age of 14? Because I feel there isn't, except for the more severe folk who learnt to talk late. I didn't learn to talk late. I reached all my milestones on time, even potty training was easy. My mum said I was out of diapers at 22 months, and dry every night by age 4.

Point taken.

Note that in my post I mentioned the value of being aware of my own autism at an early point in my adult life. Your experience has reflected a number of unfortunate events that occurred as a result of knowing as a minor, where virtually your whole life remains in the hands of your parents and in some ways your peers.

At a certain point in my childhood, being bullied increased astronomically. I can see how much more of a burden it would be had everyone around me been told that I am "different" in some way in which most kids would simply disparage me even more.

Though had I known as a young adult, I like to think I actually had a chance to indefinitely sustain relationships with NT women. Not knowing cost me plenty, though I realize there are never any guarantees. Even then, in my country's culture and society I'm not sure I'd want to be transparent about it at all. Not to mention how stigmatizing it can potentially be, based on how much or how little information others have about our condition.

 

[Xinyta]

It depends on the person.

People are people and everyone is different in how they will handle something like a ASD diagnosis.

Though I would suggest approaching it in a indirect way. Something where you are suggesting for the said friend to look into Autism, without out right saying it. Saying something that could peak his/her interest about it. Maybe enough to make them curious enough to persue information. This is granted that they are not already aware/suspicious of the possibility.

 

[Ken]

Yes. Or at least not have told everyone else as well. And I mean everyone else, including my whole class at school. I hated being the kid with the label.

I wouldn't advise against telling people, especially adults. If it had been suggested to me as an adult or even maybe my teens, I might have taken it differently. But being lumbered with endless appointments, assessments, social workers coming to my house, etc, as a young child (around 8 years old but it didn't end there) was rather traumatizing and I feel like it's all I've known. And now to discover that 99% of high-functioning Aspies like myself don't get diagnosed until adulthood (even millennials or younger who grew up when autism was more known about), it makes me feel even more angry, as I could have lived a normal life without being singled out with a label as a kid if the stupid school had kept their mouths shut and left me alone.

I was never diagnosed until I was 67 years old and it was me that did the diagnosing. My life has been very hard, tragic, depressing, confusing, frustrating, etc., etc., etc... Though I was never diagnosed with autism (autism was completely unknown when I was young), I was still given a label; I was labeled, "retarded". Interesting that with a retarded label, I am now a retired electronics design engineer. Exactly what I dreamed of as a young child. Don't know if that would have worked out any different if my label was autism instead of retarded. At least, I think I prefer autism over retard.

I think the really bad part about being labeled autistic is that autism is regarded as a very shamefully bad condition to be afflicted with. The diagnosis is an accusation. I think regarding it as shameful is the real shame. If autism wasn't considered as such, I wouldn't have minded the label. If it was depicted as I feel it truly is, then it would have been good. It hurts me to know that so many thousands of people are literally taught to be ashamed of themself for being autistic. I consider that systemic bigotry and extremely abusive.

 

[Misty Avich]

I was never diagnosed until I was 67 years old and it was me that did the diagnosing. My life has been very hard, tragic, depressing, confusing, frustrating, etc., etc., etc... Though I was never diagnosed with autism (autism was completely unknown when I was young), I was still given a label; I was labeled, "retarded". Interesting that with a retarded label, I am now a retired electronics design engineer. Exactly what I dreamed of as a young child. Don't know if that would have worked out any different if my label was autism instead of retarded. At least, I think I prefer autism over retard.

I was still seen as the ''retarded kid'' even though everyone in the class knew of my Asperger's label.

I think the really bad part about being labeled autistic is that autism is regarded as a very shamefully bad condition to be afflicted with. The diagnosis is an accusation. I think regarding it as shameful is the real shame. If autism wasn't considered as such, I wouldn't have minded the label. If it was depicted as I feel it truly is, then it would have been good. It hurts me to know that so many thousands of people are literally taught to be ashamed of themself for being autistic. I consider that systemic bigotry and extremely abusive.

I was conditioned to feel ashamed of autism but I'm not allowed to use ''ashamed'' and ''autism'' in the same sentence on here because it offends everyone apparently.

 

[Ken]

I was conditioned to feel ashamed of autism but I'm not allowed to use ''ashamed'' and ''autism'' in the same sentence on here because it offends everyone apparently.

Well, it didn't offend me. Makes me sad, but not offended.
Note that I mentioned ashamed and autism in the same sentence before you did. My excuse - I didn't know it was offensive.

 

[Richelle-H]

I'm glad I knew nothing about autism when I was young, especially as I was becoming an adult. That's a pretty tough time for teenagers and just like any other teenager if there was a handy crutch like "It's not my fault, I'm autistic." I probably would have leant on that crutch a lot and not become as free and independent as I am.

I am in agreement with the above quote. By the time I knew that there was a name for my inability to fit in with others, I was already married for several years. A subsequent formal assessment did not alter me, at least initially. However, it helped me through a rough patch at my last job before I retired.

I believe there is not a reliable answer to the question of "should you bring your suspicions up?". We are all so different from one another, even though we may share a great deal of common ground. One person may find it deeply offensive (unless, perhaps, you are a practicing member of the psychiatric profession). In another person an offhand comment may send them in search of answers, motivated by innate curiosity (my own personal journey).

I would opt on staying silent about one's suspicions unless you are firmly imbedded in that person's life. That is just me, as I do not like instigating what could easily turn into something that I would find difficult, if not gut wrenching, to weather. However, as ASD is deeply engrained in my family and their progeny, I would have no problem in pointing it out to one of my tribe who seemed ignorant of their family history.

 

[Misty Avich]

Well, it didn't offend me. Makes me sad, but not offended.
Note that I mentioned ashamed and autism in the same sentence before you did. My excuse - I didn't know it was offensive.

Well others are allowed to say it but I'm not, as apparently saying you're ashamed of having autism is uncalled for on an autism site. It might also be due to the hostility from a previous autism site I was on has followed me here, so I do get treated a little differently than others do.
It shouldn't be offensive though, as it's not like I'm saying autistic people are shameful. It's just the way I feel, due to my past. I think a lot of Aspies get embarrassed talking about their ASD, maybe because some of the symptoms seem similar to narcissists or psychopaths (and no, I don't think that myself). It's frustrating when people on these sites think that just because I said something it means it's from my mouth only and that I'm trying to offend people. But it's not like that at all. Just because I say something it doesn't mean that is my opinion. It's like if you went into a house that everyone says is bad, but you had no bad experiences there but you still may call it ''the bad house'' because that's what it's just known as by others, even though you don't feel it's a bad house and you did not give it that name. On the other site I was accused of being the one who invented all this stigmatization about autism. She said I was trolling and everything, even though I had been there over a decade posting frequently and having never offended people before. Nasty piece of work.

Autism isn't shameful factually. I like autistic people. A lot of my friends are autistic and I don't feel an ounce of shame about them. I love them. Autistic people are great, and I love giving support to them on this site. I'd like to volunteer or work with autistic people and I'd be proud of it, although sadly there aren't any autism care homes in my area. So I don't believe myself anything bad about autistic people. But with autism itself, I'd rather stay closeted about outside this forum, and if I had the choice I'd rather not have it at all, and yes I do feel embarrassed whenever people mention it to me (those who know I have got it, as anyone who knew me since childhood know and remember me by it because everyone was told), for many reasons that I won't go all into right now. Yes, I do have hang-ups with being on the spectrum, I am insecure and have a poor self-image. I admit to that. Just like some folk here have a problem with being single and being unable to have a relationship. We shouldn't criticise or get offended. This is a diverse site, there will be all sort of people here from different cultures and beliefs and experiences with autism, and not everybody is going to feel fantastic. At least I would never discourage other autistic people from seeing their autism as a superpower or as a gift, because, yes, autism IS a superpower or a gift to some people. Maybe that's all they've known autism as in their experience, and that is great. I wouldn't deny that at all.

 

[Jumpinbare]

That's a pretty tough time for teenagers and just like any other teenager if there was a handy crutch like "It's not my fault, I'm autistic." I probably would have leant on that crutch a lot and not become as free and independent as I am.

Remembering myself as a teenager, I think it would have gone one of two ways. Either the crutch approach @Outdated mentioned, or rejecting the idea so intensely that all my energy would have gone into proving the diagnosis wrong. So instead of just masking to not stand out like I did, I would have uber-masked to prove I wasn't autistic.

The above is assuming I found out in my teens. Had I learned much younger, it would likely be different since I would have grown up with the knowledge. I really don't know how things would've gone then.