How do you feel about "invisible" autistics?

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Right you are. Everyone has had an "enlightening" moment and can appreciate the thought. And when this particular "enlightening moment" can now stand up to all scrutiny, then we have our present topic of discussion.

i think the problem is really just the people (usually younger people) looking for an excuse to be rude, or trying to be "fashionably uncool" (hipster mentality), and the like. or maybe a few psych-hypochondriacs here and there

other than that, not even specialists know how to define "the autism spectrum" in any nearly satisfactory way anyway. as it is today, "autism" is a catch-all category for a broad variety of things that have some features in common, but which specialists haven't found any proper way to categorize. diagnosis itself (or failure to diagnose) can't be fully trusted, especially among adults who have already developed coping skills. and even when it is close to certain, it doesn't mean anything definite, because there's no clear-cut definition of what is being diagnosed to begin with

I think there is actually a real stereotype that autism portrays itself as emptiness, soulessness and disconnection. "The lights are on but nobody home" sort of thing. I am unsure whether this stereotype has any basis in reality, (I suppose it probably does since the very word autism is rooted in the withdrawal into the self)

Anyway, rightly or wrongly, if you seem alert and connected to the world people will say you can't be autistic, no matter what problems you may bring up.

I think this why men often appear more autistic than their female counterparts, because for some reason men do tend to have a more "closed off" vibe than women.

For me, this is kind of how I feel about most things in the world. Let's use facebook as an example. We know nothing on facebook is real. One, because (in my opinion) "real" is a construct. Two, because you choose what to post, and most people try to make their lives seem as good as possible (isn't the point of facebook for most people to show off? I know I'm guilty of this, but screw it, I'm human.) Tangent, but anyway. Second, everyone's reality is different.
So my basic point is that you can't assume anything about anyone and you can't let anything they do or say be about you. Everything they do is a reflection of themselves. If announcing to the world that they have autism is what floats their boat, more power to them. Do I find it frustrating when people who seemingly have none of the issues I know I struggle with on a daily basis make a blanket statement like "I have autism! *big smile*"? Absolutely, but you can also never know what they're actually going through. I can fake neurotypicality pretty easily, but I'm very much not neurotypical.

I personally don't know many people that are mildly autistic because most of the people that I know who are autistic are severely autistic from my school and classes that I have been in for working on my social skills. I never judge people who say they have autism but don't show many signs because I am one of those types of people kinda, to kids at my school who don't know me well I probably look pretty nt but to my close friends and family they know when I'm having trouble with social situations or I can't handle the load noises.

I think that people should not say in public that they have autism or are autistic without being officially diagnosed with autism.
If they want others to be aware of diagnosis problems or flaws in the system, it is fine to say that they suspect they have autism, but have trouble finding a professional, cannot pay the fee, etc.

I fall under the whole "invisible autistics" type thing. My autism isn't visible unless you were to spend an entire week with me at my house. It makes it hard for people in public to believe I have it. I'm not usually the one mentioning it though. My mom has this habit if doing it. Yes, I have told her not to tell people. She is the kind of person that won't listen. I also believe that both my parents have autistic traits too. My dad falls under the spectrum of Asperger Syndrome. I can see it in him a lot because of how he acts socially but also because of his narrow interests. He is far more intelligent than both me and my mom as well. He shows this a lot in certain situations. My mom on the other hand seems to fall more under PDD-NOS because she's actually very social. I just think that in addition to her social interaction, that she doesn't often understand it at the same time.

However, these are things that I notice about my parents. No one else (other than my dad seeing my mom on the spectrum though) sees it the way I do.

I think I understand what you're trying to say.

But how could my realization (for example) hurt anyone/anything? I feel I've spent my entire life facing the same difficulties other AS folks do, plus being in isolation for all those years until my "discovery",...I think most might say "I've paid my dues" as it were. Would you agree?

So if my decision to speak about my AS, what business is it of yours at all? I don't ask this confrontationaly but as a friendly question. It's my life; why can't I live it as I please Why would I listen to a stranger who will not tell me what is wrong (who am I hurting?) but only seems disapproving of others?

Essentially it seems you're saying: If it's impossible for someone to manage to prove to your satisfaction they're on the scale (as you have done), then they should keep their mouths shut unless they're willing to say they are NOT officially on the spectrum? This makes no sense and if I were forced to do this it would feel very dehumanizing, although I know this is not your intent.

Remember: No harm, no foul.

If you met me, you would probably never guess I am neuro-atypical (diagnosed later in life), but rest assured, the diagnosis is accurate and behind closed doors, it's exhausting...

My schools had small class rooms, a personal approach, taught us (all girls) how to act, and only had students that showed a certain level of academic promise (like minds - certainly made it easier). Parents just accepted me as a bit strange but also relatively bright, so I didn't really notice that I was that 'off'.
No significant issues until adulthood - responsibilities (stress) hit hard and I got diagnosed. Cue the aha-erlebung! Everything made sense.

Currently, I can keep up the facade in my professional and social life - insofar as this is necessary. But it takes a toll in the sense that it causes stress and drains me to the point of +/- biannual shutdowns which can last up to a week.
Will figure out how to fix that cycle after the PhD is submitted but now is not the time to change things up and risk making it worse.

Anyway, yes, most people who I come into frequent contact with are informed of my position on the spectrum. All shocked, but tbh, I've gotten mostly positive reactions. It is a spectrum after all and we all vary in (intensity of) our personal (non-)visible quirks and difficulties.

Finally, I do feel that speaking out about being diagnosed is a good thing, as it creates more awareness and diminishes stereotypical thinking in NTs.

Well, this ran longer than expected.

Tl;dr: not seeming ND and coming across extremely high-functioning does not an NT make

Personally (if I can join in), I do fully appreciate btbnnyr's position on this.

I am not formally diagnosed (T-5 days until my assessment!). At this moment in time, I would not dare to say 'I am autistic'. I may be convinced that I am, but I cannot be entirely sure. I am self-diagnosed and I currently make my own adaptations as though I am, but I feel that it isn't right for me to say that I am autistic.

When I say that, I become a representative of the 'autistic community', if there is such a thing. Not just an advocate of, but a representative of. This is like me saying that I am a Mensa member (I most definitely am not, but assuming that all of my research had suggested that I would get into Mensa), despite not actually being one. If that makes sense.

Actually, this is one of the biggest drivers that has led me to ask for a diagnostic assessment. At the moment, I would not tell anyone 'I'm autistic' and as such I am missing out on accommodations that would really help me. For example, I don't do well with phone calls at all and would like to be able to ask people to contact me by email instead, where I have time to process their questions and come up with the right responses. I would never say "Please can we communicate by email? I'm autistic", so I'm left struggling with phone calls or, in many cases, I get my husband to answer my phone and say "She's unavailable at the moment. Can I take a message, or, ideally, could you email her the details?".

When (if) I am diagnosed, I will then be happy to say "Can we do this differently? I'm autistic". Until I'm diagnosed, that isn't something that I would do.

I understand both perspectives, of course, but personally I think that everyone that claims to have autism becomes a (forgive the symbolism) jigsaw piece in the wider picture of 'autism'. I see that as a responsibility best kept for those that have been diagnosed.

Which isn't to say that self-diagnosed people (myself included) cannot speak as autistic people, provided they do not claim it as a certainty.

I have been in a similar discussion on WP in the past (maybe even with btbnnyr?) and said that I had no issue at all with self-diagnosis and didn't believe that anyone would say that they definitely were autistic without being formally diagnosed, but I was possibly mistaken about that if there are some self-diagnosed people that do tell others that they're autistic.

Hi ArielsSong,

You said:

I am not formally diagnosed (T-5 days until my assessment!). At this moment in time, I would not dare to say 'I am autistic'. I may be convinced that I am, but I cannot be entirely sure. I am self-diagnosed and I currently make my own adaptations as though I am, but I feel that it isn't right for me to say that I am autistic.
Could/would you tell us what the tester/test might reveal that you would not know already, either through experience or study? I assume (there's that big ass-thing again; I try not to do that too much. )

When I say that, I become a representative of the 'autistic community', if there is such a thing. Not just an advocate of, but a representative of. This is like me saying that I am a Mensa member (I most definitely am not, but assuming that all of my research had suggested that I would get into Mensa), despite not actually being one. If that makes sense.
That would not be in keeping with the fine tradition of Mensa, certainly, especially if you had diminished intelligence and (for example) you participated in a public contest and besmirched their name; that makes sense. But if I were schizophrenic or had some other malady, do you feel I would besmirch the good name of Autism??? Doesn't have the same flavor to me, but it may to you.

Actually, this is one of the biggest drivers that has led me to ask for a diagnostic assessment. At the moment, I would not tell anyone 'I'm autistic' and as such I am missing out on accommodations that would really help me. For example, I don't do well with phone calls at all and would like to be able to ask people to contact me by email instead, where I have time to process their questions and come up with the right responses. I would never say "Please can we communicate by email? I'm autistic", so I'm left struggling with phone calls or, in many cases, I get my husband to answer my phone and say "She's unavailable at the moment. Can I take a message, or, ideally, could you email her the details?".
Why not just ask people to email you. Just tell them it's the most convenient because you're often not available by phone; you don't have to give anyone your life's story and still be friendly.

When (if) I am diagnosed, I will then be happy to say "Can we do this differently? I'm autistic". Until I'm diagnosed, that isn't something that I would do.
Again...you do not have to make excuses for your personal requirements.

I understand both perspectives, of course, but personally I think that everyone that claims to have autism becomes a (forgive the symbolism) jigsaw piece in the wider picture of 'autism'. I see that as a responsibility best kept for those that have been diagnosed.
I'm not sure what "responsibility" you think you will have??? Behave a a proper autistic should perhaps??? And how would that be exactly?? I think you folks are making a mountain out of a molehill....although molehills to some (I like moles) can be irritating, I doubt too many could agree on your guarding of the jigsaw puzzle for such a reason. Personally I believe life is a jigsaw puzzle we ALL belong to. (You can tell I'm not big at excluding people.)

Which isn't to say that self-diagnosed people (myself included) cannot speak as autistic people, provided they do not claim it as a certainty.
But you could describe your certainty, as for example: 99.99% sure (absolutely..just waiting for the official confirmation)? Or 50% sure (I think I am maybe) if that were what you were centering your discussion on; or words to that effect, etc....but why would you? What do YOU think, where does your testing put you....DON'T answer...but if the testing differs radically from your previous personal testing I'd be quite surprised...as would you. If the testing came back to say you were actually not on the spectrum how would you explain your "difficulties?" Would you then stop telling your husband to screen your calls? How do you expect your life might change???

I have been in a similar discussion on WP in the past (maybe even with btbnnyr?) and said that I had no issue at all with self-diagnosis and didn't believe that anyone would say that they definitely were autistic without being formally diagnosed, but I was possibly mistaken about that if there are some self-diagnosed people that do tell others that they're autistic.

And why not...if the shoe fits. Your own uncertainty is personal to yourself and some select others, but others may not feel the way you do. There's enough variability in life that we should learn to respect others viewpoints. If you keep your opinion to yourself then none is hurt....But when you begin trying to exclude a group of people on the basis of your own likes/dislikes (not that you have) that's called discrimination.

It is untruth to say "I have autism" or "I am autistic" without being diagnosed with autism.
Autism refers to be a specific mental disorder, autistic is the adjective version of autism, so saying either requires diagnosis.
If someone says "I self-diagnosed with autism", I have no problem with them saying that, although I think the self-diagnosis process is invalid, but that is about the process, not the statement.
Anyone may choose to accept their statement as truth or not, that is the business of each person on the receiving end.

Hi ZenDen. I wonder if this is going off-topic, but think perhaps not? Perhaps this is all part of being 'invisible'?

Do I believe that the test would reveal anything that I do not already know? Honestly, it's unlikely. However, there is the slightest doubt because I feel that one individual cannot know the full scale of NT-autistic. Everything from my extensive research and personal experience says that I am autistic, but at the same time I cannot know how it feels to be another autistic person or another NT person. When an autistic person says that they are sensitive to certain textures, how can I know that the scale of my sensitivity is closer to theirs rather than being closer to an NT's experience of them? That said, how can an objective assessor?



I am unsure exactly what you're saying here, but I think this is where the 'invisible autism' bit comes in. I would not be besmirching anyone's name, exactly, by saying that I'm autistic, but if I cope better than most autistic people and I'm not actually autistic but tell people that I am, am I giving NTs the impression that autistic people should all be able to cope like I do? It's about overall impressions, I feel.



Unfortunately, without good reason I don't feel able to ask for those accommodations, and even when I do try there are companies (and individuals) that often say that there are no other options. "This must be dealt with by phone". I have explained to people in recent years that I cannot speak to them on the phone because my young daughter requires my attention and I can't give her attention whilst talking on the phone, for example, but then I get "Well, call us at a better time", even if I have suggested email as a valid alternative. I feel that with a diagnosis, I would feel far more comfortable saying "No, this doesn't work for me" and they would feel that I had a real reason and was not just being difficult.

People are not particularly accommodating of those that don't want to do things 'the traditional way', or the way that they are told to in the company handbook. Quite frequently in business I have heard "No, this is too much to explain by email. It will need to be discussed on the phone".



Perhaps you are right about the mountain out of a molehill. It is not about acting autistic, I would say. Certainly since self-diagnosing I have been acting increasingly 'autistic' because it is infinitely better for me as a person to let the 'real me' out, rather than trying to act 'normal'. It makes no difference that 'acting NT' is all I've known for nearly 30 years - acting autistic for a relatively short space of time has overridden all of that and made me 'feel right' for the first time ever. But, I would certainly have concerns that claiming to have autism when I cannot be 100% certain (even though I am 99.9% certain) would cloud people's judgment of 'real' autism. If I turned out not to have it, would I simply be an NT person with issues and would people's opinions of autism actually have been slightly adjusted to encompass me, the weird NT? I fully see your point that this is splitting hairs, but this doesn't remove the concern for me.



I would be very happy to say that I'm 99.9% sure I have autism. I say this to my husband. I wouldn't say it to anyone else, however, because it seems odd bringing up a condition that I may not even have. I suppose, if I'm honest, I'd feel like an attention seeker. It was hard enough telling my husband when I first self-diagnosed - I had very strong concerns that he'd think I was being overdramatic. At the time he did not dismiss the idea but equally did not endorse it. Now, he's almost as certain as I am. But is this confirmation bias? Do we learn to 'blame' everything on autism if we believe that we have it?

I wouldn't know what to do if I found out this coming week that I were not autistic. It would absolutely shatter my world. I have found the comfort to be myself in the internal knowledge that I am autistic. "I can do this, and I don't care what people think, because it's just that they don't know I'm autistic". If I turn out not to be autistic, that confidence to be 'odd' in front of other people would be gone, I think. It could damage the progress I've made, very significantly. And I know I should be myself no matter what others think, but if a friend were to ask "why are you wearing your sunglasses indoors?", I honestly don't think explaining that I have headaches, feel sick and can't focus otherwise, would come easily to me.

My husband, on the other hand, insists that as he is now certain I'm autistic, if I were not diagnosed with autism he would be taking me straight back to the GP to find out what IS wrong. Personally I'm not the type to waste a medical professional's time without a solid reason, so I do not feel comfortable with this and think I'd be happier just trying to get by the way I did before 'autism' was on my radar.

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I fully understand and I'm not here to tell others what they can and cannot identify with. I believe we all have to identify with what works for us. I'm simply of the opinion that 'misrepresenting' could be a concern. I am unsure what you mean by 'exclude a group of people', though. I certainly don't agree with excluding self-diagnosed autistic people (if I had been excluded in recent times from this community, I don't know where I would be!), but I do feel there is a difference between being a part of the community and telling others that you are. But, again, this may be splitting hairs.

My wife would bring up autism to explain my model room, which contains hundreds of exceptionally well designed or finished models. I've built models that win competitions. People aren't used to seeing stuff like that. My office is similar, but I like to keep them guessing. I'm one of those people who can re-engineer lousy designs to make them work.

As I wrote in a previous post on this thread, my autistic traits, while annoying many, were invisible to all in the sense that everyone assumed each trait was a result of my femaleness, giftedness, or NT weirdness.

Ironically, after I became convinced this year that I had Asperger's, I went for a formal diagnosis because of one of those annoying traits everyone in my life assumed was an NT idiosyncracy: my literalness. To me, autism is a diagnosis by definition. It is not a physical fact, but a conclusion of the psychiatrist's or psychologist's art.

So before I could feel comfortable calling myself "on the spectrum," I needed a diagnosis (which I got in May).

On the other hand, I believe that anyone less literal than myself should feel entitled to call themselves "on the spectrum" if, after consulting with people who know them, most agree that a sufficient number and intensity of DSM autistic traits have been demonstrated over time.

After all, reasonable professionals may and do differ in their diagnosis of the same constellation of traits. Over his childhood and adolescence, my younger gifted child was diagnosed with, in sequence: schizophrenia, ADHD, ODD, bipolar, and sexual dysmorphia. Same set of traits, multiple diagnoses. After being accepted at the University of Wisconsin in a prestigious biology doctorate program, my child decided they were Trans. All the prior diagnoses are now considered "mistaken."

Given my personal experience with the inaccuracy of many professional diagnoses, I paid a professional only to satisfy my Aspie need to conform literally to the definition of autism before claiming it.

If others don't have that Aspie need, I see no reason why they should be required to pay a professional.

lucky, thats what id say, im a more obvious autistic so i guess i feel that invisibles are lucky