Sorry I have to ask this

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If nobody can tell if someone is autistic, like people ask if they should tell their, coworkers, friends, siblings and parents that they are autistic, how can they have autism? I mean how can it be so invisible, even their parents never noticed it? I just don't get it sometimes.

Because most people do not know what autism looks like.

You can think someone's 'odd' or 'weird', or that there's 'something not right about them', without having a clue what it actually is. And you also can't see into someone's mind, so unless someone with autism explains their thoughts how can others know what's going on in there?

For me, my husband just thought I had some unusual obsessions or weird quirks that frustrated and confused him. Only once I suggested autism and he started to learn, did he link all the weird things I did with the fact that I'm autistic. And because he'd never mentioned them before, I didn't even know that they were unusual behaviours.

People always identify that something is 'not right' about me, but that's not the same as knowing that someone has autism. They might not even consciously know that something is not right. It may be a subconscious realisation.

Sometimes, especially if the traits are in the family, parents may not believe those traits are part of 'autism'. They may not really understand or they may fear that autism traits mean that they are the 'fault' of bad genes, etc.

I gave the childhood reports to my family without specifying they were for an ASD assessment. Documents supported ASD. Told them afterwards - family retracted all claims and set out to prove I was 'normal'. After about a year, my grandmother admits that she thinks it runs in my grandfather's family and my dad now agrees with it.

My MIL has had mobility problems for over a decade but thus far has struggled in severe pain for fear of being thought of as 'old'. Well recently my SIL bought her a stick and a push-able trolley. My MIL's friend for a number of years has now uninvited her from events and sent her a Christmas present that is stereotypically for elderly. Has MIL changed? No. Has her friend's perception? Absolutely.

Last edited by ConceptuallyCurious on 27 Dec 2016, 9:31 am, edited 1 time in total.

Some of us are master actors. We've studied facial expressions, body language and tone of voice, and we're able to select what is appropriate in most moments. The problem comes when we face a social situation that is new for us. I come of completely normal. But I don't have experience with intimate relationships or close friendships. That's when people start to notice that something is off. I tend to freeze completely or get robotic in my responses.

It's important to note that my methods aren't accessible to everyone. The extent of my impairment with some of the harder aspects of autism is pretty mild. What I mean by this is that I'm able to "act" my way through most of the time, but some autistic people can't do this or chose not to do this for their own reasons. For example, I've seen an autistic woman who is able to talk typically, but it wears her out and she gets this whole body pain, so she chooses to use on of those talk boards.

You don't need to apologize for asking a harmless question.

Anyway, some people on the spectrum have ASD in a more complex and less obvious way, like myself. My ASD is so complex that I often question my own diagnosis. To those who don't know I have it, even if they know about autism, probably wouldn't guess that I'm on the spectrum. They'd just assume I am an introverted and sensitive NT with some odd or eccentric ways. They might question themselves about me if they knew about autism, but not know for sure unless they were told I have it.

I don't speak in monotone (although I can mumble if I'm nervous, or speak quietly if shy). I make normal eye contact. I have a sense of humour and laugh a lot. I don't have a special interest. I can maintain a healthy relationship with my boyfriend. I can express feelings and emotionally relate to others. I have no trouble reading body language. I don't 'autisticly' stim (I sometimes do socially acceptable stims). I don't have high IQ. I am easy to talk to (I don't interrupt mid-sentence). I am not 'too honest' (I can naturally filter out what's appropriate to say and what's not). I pick up on emotions easy through body language, facial expressions and tone of voice.
The ASD traits I do have are complex or easily mistaken for another neurological disorder, like learning difficulties or Bipolar (I don't have those), or as just an eccentric person. My anxiety and ADHD notices more.

Honestly, I've seen someone in an autism school explaining to a visitor that one of the non-verbal children 'wasn't really autistic' because his receptive language was good (e.g., could follow a one step instruction such as get an apron if asked).

I have been different all of my life, but nobody ever brought up the idea of autism. One teacher thought I was hyperactive because of my high energy level, but that wasn't right. I always remember being interested (obsessed) with something. Animals were a constant throughout my life and I always remember studying some country in depth (currently it's Russia, Serbia and Uzbekistan). I was late to many social and independence milestones, even though I was university educated. I didn't get my driver's license until I was 48-3 1/2 years ago.

I didn't know what Asperger syndrome was until 1997, when I read a book on autism at the library. The traits really fit me. The AS test put me at 28, on the borderline between neurotypical and AS. I would say that is probably accurate given my current level of functioning. My strongest indicators of AS, special interests and some social awkwardness remain, but I am far more active than I was even as recently as two years ago.

What do you think are the core traits that are visible and that people should connect with autism?

It seems to be a gut wrenching problem for those who are able to pass. And keep in mind that they don't pass entirely. There's always some little thing that slips, but other people will misunderstand.

I used to have a classmate who passed fantastically. She let many classes go by and even asked me questions about my research and I had no idea she was on the spectrum. She looked like a model and was intimidatingly intelligent. Like, one of those people where you use the word "intelligent" instead of "smart"? You know? Just an intimidating person in general, although she was super, super nice. One day she busted out with this personal thing about how people staring at her face made her want to cry and no one ever knew she was autistic and so on and so forth. I was stunned. I had been studying passing, but until I knew that girl, I hadn't seen in real life the pressure that autistic passing puts on someone.

And I mean, I have gay friends who pass- so I know that passing is complicated and can make your entire life function while also taking a terrible toll on you. It's a big thing. I don't think you can compare the experiences of people who can fake it to people who can't. It works and it doesn't in unique ways.

I used to get, "If you know X, why can't you do Y?" At that time, I only knew about very severe autism from my extensive reading about the subject. I suspected I was on the spectrum somewhere since I was in the sixth grade, when I read a Reader's Digest book condensation, "For the Love of Ann," about an English girl with severe autism. Her case was extreme, but it alerted me to the idea that I might be somewhat different from other people. There was no way I could have responded to people who asked questions about my very mixed profile of strengths vs. deficits with, "Because I have Asperger syndrome," because that diagnosis was not known about in the United States in the 1970s.

As others have written here about it, masking can be exhausting. Masking was something I did from a very early age because I (unintentionally) studied Disney and other movies to figure out my own social practices. As such, my masking is more apparent (to those who know me) than it otherwise might be, especially since I can only mask for a couple hours at a time. My ADOS-2 module 4 score was 11. My diagnosticians debated on whether my score was 10 (threshold) or 11 for a few weeks after my assessment. Either way, I was and am just-over-the-border-line autistic. This doesn't mean that I can control my 1) EXTREME social-approach impairments (AKA shy and don't want or enjoy social chatter), 2) sensory sensitivities, 3) shutdowns, 4) meltdowns and 5) most routines. All this apparently made my careers and other activities seem quite Jekyll-and-Hyde according to a few longtime friends and acquaintances.

So, even a barely-Aspie like me can have debilitating "behaviors" and other smoke signals that would be noticed by others. More than one of my former employers have recently admitted that they knew I was "something like" autistic. But, some people simply see no reason to read up about the autism triad of impairment and its common comorbids. I don't really blame them.

My dad never considered it because I had already been diagnosed with Selective Mutism and he figured that's what was wrong with me. The rest of my symptoms/behaviors are similar to his. He had extreme interests, was pathologically introverted, had no social skills, and had a thirst for knowledge. My brother is the same. It's hard to see that someone is different when they are the same different as you are.

in the old days (before 1994), autism was a cut-and-dry sort of disorder. There were definite symptoms. And it was Kanner's/Classical autism exclusively.

Nowadays, however, "milder" forms of autism have come to the fore--such as Asperger's. Their symptoms are not so cut-and-dry. There is much more room for doubt with these "milder" forms than in classic/Kanner's autism.

It is not "If you can do x, you can't have autism" any more.

Autism is now a much more complex "spectrum" (post 1994) than previously.

In my case people knew there was something different about me and even though I tried to hide it, I know they knew I needed help. The thing was, back in the 70s, there was no help for high functioning autistics. There was not even a recognition that they existed. So the way people tried to help was to help me to pass. They did not realize the underlying problem.

Also, as others have said, my family members suffer from mild autism themselves, although they deny it and will even mock the disabled, I think in an attempt to distance themselves from something they know is true.

I don't fully understand your question or why you are sorry about it. Does it bother you that some people are able to mask their autism (for short periods?)

I understand what your asking and i kinda question it myself, but im also in that group your talking about.

So, basically yeah, no one knew i was autistic until i saw a few psychologists. However i was by no means seen as a normal little girl. My parents mostly thought i had bad hearing which explained why i didnt respond to anyone and did poorly in school, they also thought i just didnt want to socailize when in reality i tried to socailize i just failed at it everytime. My parents were ignorant of the signs of autism, they only thought autism was like "rainman". As a young kid they didnt notice much. It was when i hit puberty that they started to really say "something isnt right".

Basically i think its because my speach was normal aside from stutter, mumbling, and poor sentence structure which can be seen as just being a kid. But when i was going into teen years and i wasnt cleaning myself, beingg obsessed with sonic, having meltdowns for small changes, being violent in school, not making eye contact, not being expressive thats when my autism wasnt seen as just "kid things" but an actual problem and it was becoming a real problem.

As for work and such, ive learned a lot of social skills since i was diagnose and i hide it pretty good, but i still have executive functioning issues, difficulty with change and making eye contact, these things can get a ignorant boss to see me as incompitant and stupid and can get me fired.

So in compnclusion, is my autism invisible? No, somepeople with autistic children can pick it up in me and they have but to the general public im told i look like someone who doesnt care. To the oeople im closest too it wasnt invisible and appeared to them as hearing loss, being spoiled, being uninterested, introverted, "in her own little world", a late bloomer, oversensitive, or just something a little "off"

My autism definately woundnt have stayed hide until adult hood though.

I guess because it's so different from me and the ones at my school. It's feels stupid because I understand but at the same time I don't always if that makes any sense. It comes and goes. I was just having one of my moments. But you know I can't even figure myself out half of the time.

Last edited by EzraS on 27 Dec 2016, 12:16 pm, edited 3 times in total.