"You have Aspergers? You must be very high-fuctioning."

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"Sure, but "high-functioning" isn't equivalent to well-functioning. No, I don't have same problems my cousin with low-functioning autism has but that doesn't mean my life is easy."

Perhaps I should start telling people that when they tell me how "high-functioning" I am. The truth is I am high-functioning but I'm certainly not that well-functioning a lot of the time. People have no idea how much is constantly going on inside my head. I do my best to achieve my goals and live a good life but it's incredibly difficult a lot of the time. I struggle with things (things both associated with autism and depression/anxiety) pretty much every day but people mostly don't see that.

I don't mean to complain but sometimes I really wish people could understand that. Been thinking about it quite a bit now before going home to see my family during Christmas. (In this case it was my grandmother who told me that I must be high-functioning and all I did was saying "I guess" while thinking "you don't get it".)

What do you tell people when they say you must be very high-functioning or when they don't believe you have autism? Is it wrong to get a bit annoyed when people say things like that?

EDIT: Added a question in the end.

Last edited by rebbieh on 21 Dec 2014, 2:04 am, edited 2 times in total.

I haven't found a good response. I usually shrug it off because the few times I have tried explaining the difficulties I face it didn't go well.

Yeah, I shrug it off too after a while but I still wish people understood what it's really like.

Being Aspergian, of course, can be rough....but at least you have your basic faculties. At least you don't feel compelled to bang your head against a wall.

There are times when I lack perspective and REALLY pity myself....but then I reflect on how I could be in MANY worse situations.

Just make sure people treat you with respect.

I didn't mean for it to sound like I'm pitying myself. Sometimes I apparently can't even get things across properly online. I just meant to say that it's tough that people don't get it sometimes.

Also, I might not bang my head against a wall but I do hit myself in the head sometimes I that's not much better.

Oh my goodness, rebbieh, I could have written that post myself. I only found out I'm autistic this year and the few people I've told have tried to make me feel better by saying, "you've only got it mildly." They have no idea how much acting goes on to make myself appear "mildly" autistic and high-functioning and how exhausting it is.

Really grok this thread!

Looking normal undermines our failures and destroys our successes!

I have only told a very small number of people. A person at work and a few family members.

They were not totally surprised because they were aware of aspects of my behavior that make sense with the diagnosis and are otherwise confusing. I haven't told anyone who doesn't know me and anyone who knows me has a reaction more like:

No! Really? Huh. So that's what it is! I knew there was something.

They do say "well it's very mild" but I know that:
a) on a spectrum with very severe people, it's true
b) they are trying to be supportive rather than dismissive

But the main thing is they have seen odd gaps in my ability to function, and things that "fit" with mild autism.

The thing is: they think of autism as something very serious, very bad, something you don't want to have or be. So when they heard it, they wanted to be reassuring.

The curious thing is that they then tend to speculate about traits in the family, noting that my mum has many and then telling me about quirks and peculiarities in cousins I don't know or previous generations.

The people at work have done a similar thing, but in a self-revelatory way. They tell me about an uncle with aspergers or their experience with a child or relative with some other "invisible disability."

One of the projects I worked on this year was a brochure about "invisible disabilities" as part of the diversity program at work. It was full of interesting concepts. If you are having trouble explaining this to people, maybe referring them to some of the online invisible disabilities material would help.

I just nod and say sure. NTs have no obligation to understand us. I don't think everyone want to listen to all my problems. Besides, if I shared them then I have to listen to all their problems. Generally speaking life is not easy for most people, even the most social, well organized NT. They might have relationship issues, health problems, dying parents, nasty boss, rocky faiths, addictions...etc. I don't really want to hear about them if I can help it.

Well....

My husband has s**t executive functioning skills, which makes it impossible to motivate to anything.

His pragmatic speech issues bad enough it got him fired from work.

His sensory issues are so over the top it affects his quality of life.

And he does bang his head during his melt downs.

I think the high functioning criteria is pretty low. You need to be able to feed yourself, toilet yourself and are verbal. My husband can do all that (eating is dicey-sensory issues), but it's not like he's living this fun filled dynamic life style. The s**t that puts a low functioning autistic person into meltdown mode also does my husband.

When someone pipes up that "You're not so bad", it's patornizing. It's not like my husband can boot strap himself out of his sensory issues. It's not that "he isn't trying hard enough".

He knows what a spoon is and can use toilet paper, but that doesn't mean Autism is a barely non issue for him.

My husband can talk about quarks and quasars for hours, but can't really use the phone to make appointments, barely can shop, and groups of humans stress him out. Just because you have a high IQ doesn't mean you are high functioning.

I know people say that to make you feel better, but we don't tell Joe Blow, "You are so lucky you don't drool."

The high fuctioning statement is one of my pet peeves.

I get the same response a lot. Another response I get is, "You don't look autistic to me." I remind myself that those well intentioned people were around before all the different types of ASDs were known.

In my case, this particular problem has not arisen so far, thank god. Very people IRL know about my diagnosis and the ones who do know haven't said anything about it to me. I never even told them: my mum did.

Personally a statement like "at least you only have it mildly" or "there are other people worse off than you" would probably - on a bad day - make me explode with rage at the person who said it. I don't very often lose it in real life, but in recent years it has become a more common thing. I have absolutely no tolerance or patience for ignorant people; I don't care if they "mean well" or not. The fact is they don't have a clue. They didn't have a clue about my Crohn's or my depression; and they certainly won't be any more clued up about my Asperger's/autism.

I frankly don't care if there are other people who are worse off than me. I know there are. Some I do feel very bad for indeed, but does that make me any more grateful for my life? No it doesn't, because in its own way my life has often been utter hell. Maybe, just maybe, there are some people with LFA who are happier and more contented than I am. Or maybe I'm deluding myself; I don't know. Either which way, contemplating other people's misery doesn't give me strength and courage to deal with my own life.

If I'm correct, the unofficial threshold for low-high functioning is a 70 IQ or above, and decent verbal skills (for HFA). I'm sure the vast majority of people with a 69 IQ can take care of their ADL skills (toileting, dressing, hygiene) quite well. In fact, people who used to be called "severely ret*d" are said to be able to take care of their ADL's.

On YouTube, I saw a person described as "severely autistic" who was able to write, had speech (semi-spontaneous, it seemed to me), and seemed able to take care of his ADL's.

Someone please correct me, can you be low functioninv with a relatively IQ? Like above 80? I know there is a person from the UK that posts here (waves hi, love your posts ♡).

The person considers him/her low, but you would never know it from the posts.

I believe "low" for Autism isn't exactly the same as considered having a low IQ.

Actually that is not always the case. I am extremely high functioning and still head bang quite a bit. I have even given myself a concussion from banging against a glass wall. One of my most recent headbangs Me Vs. Wall was a couple of months ago from banging against a cinderblock wall. Sometimes I can't help it. It just kind of happens beyond my control. I have to be super careful though because my last ski concussion was two seasons ago and three years ago I got a concussion from a car accident and I know that concussions can take years to heal completely. So headbanging can be very dangerous for me if I keep re-injuring the areas that are already trying to heal. But it really is like a compulsion, sometimes when it happens I don't realize it did until it's too late. But when I do need to headbang, I do my best to use the palm of my hand rather than a wall. Fortunately the majority of times I need to headbang I am not right up near a wall so my hand works better. But I would never say that high functioning people can't have a compulsion to headbang or do it on a wall because that would not be accurate. At least not in my case anyway.

There are many people on this forum who are low functioning and post brilliantly. I have learned so much from them and I love their posts too. I don't know that IQ is as determining in as many things as we might assume it to be.