How do you feel about "invisible" autistics?

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To SocOfAutism
I think I would count myself as one of your "Invisible Autistics".

To get a positive diagnosis means that you pass a 60% threshold of associated disorders. This means that they are Autistic / Aspersions. I think you're confusing yourself about other people's difficulties, or how you perceive their "lack of difficulty".

There are many of us who are 40+ years of age. Remember that Aspergers wasn't a diagnosable condition until 1990 when it first appeared on the books. So for me, I was working full time by the time Aspergers was even a thing. Which means, that all my childhood life and much of my adult life, I simply "had" to be as normal as I could because normal is all there was. If anything, it trains you to hide. That I became successful at hiding should be a credit to me. Thus I would consider myself one of your "Invisible Autistics". But make no mistake about it, I also scored well above the 60% threshold for a diagnosis, and I go through hell each day to be successful.

Same here, until I was able to walk away. My moment of truth came to me when I was 45 years old. I was flying home after a successful business trip. The new project was based out of London, with the derivatives trading in Milan and Stuttgart. It was your typical project, very talented traders but little available man power to get the programming done.

Which meant, having to hack together a system using the base line trading system. I hate doing that. It is no fun and always breaks. On the flight home, from Milan, I put on a eye mask and tried to relax after a glass of wine, Italian business class is wonderful. To my surprise, I found myself crying into the mask, saying to myself, "Not Again."

The London New York life is not bad, good hotels, food, talented people. I had a another project that kept me on the road in the States. Living out of a suitcase again. My elderly parents were also causing trouble. They needed more attention then I had to give. Something needed to change.

There was a corporate reorganization which I used as an excuse to leave. The new bosses were not nice and I was not willing to play the new game. I handed off the project to a brilliant young alcoholic. 9/11 happened and went to Indonesia for a month. I spent a year working on my own stuff until my mother got sick and passed away. Another year to settle the estate and deal with my father. Got involved in local politics and did well. Just as it was all coming together my father attempted suicide. Suicide is a violent act against those who love you. Another year to fix that problem. I had enough and started something new.

I tried to be an amateur street photographer. Got pretty good at it too. I have a bunch of fun stories. But, that was not me, way too much human emotion to understand with all its baggage. I busted my groin and gave it up.

My world is much smaller today.

Goatfish57

I had a very similar experience, except I stuck to my plan of retiring from corporate law at 50 to write. By that time, I was totally burned out. When my non-spectrum husband reneged on our deal that he would get the "job with benefits" when I turned 50, and I would take care of the kids, I had nothing left. I could only sit there and watch our finances implode.

Luckily, both kids got scholarships to college. Now I live in what was supposed to be my office over my barn. We sold the house and 25 acres as part of the divorce settlement.

The divorce proceedings (I was the one who filed) drained me of the last of my energy. It was over a year before I could start to write again, and I still have only about four hours a day when I can function. The rest of the time I spend in bed.

One niggle, however: my father also committed suicide, two days before my elder son graduated high school as the valedictorian, so I was furious with my father's timing. But he was suffering from pancreatic cancer, though still walking around and making his own funeral arrangements, so I don't think the suicide had anything to do with his children or grandchildren. What I was furious about was his indifference to our feelings, when he could have waited until after the graduation celebration.

Wow. You know, I'm one of those people that most are shocked to learn about my ASD. But the last two posters are giving me a way of developing empathy for the OP and people who think this way.

Phrases like "sell the house and 25 achers" and "London New York life is not bad" are just so outside of my experience.

Its hard for me to tell, but I think that I'm being asked to feel sad that you are living over the barn? I would LOVE to live over a barn. That sounds great to me. I live in a one room space right now anyways. Being out in the country would be so much quieter! I feel more at peace surrounded by nature.

I'm thinking that there is a little balance than needs to be done here. Yes, people can be autistic and not be chewing on their hands while watching Barney (Not that there is anything wrong with purple dinosaurs or with loving them!) But there is also some empathy needed on the part of people who are having feelings because they do not have a 100% fabulous life, the life that they were promised in glossy gulfing magazines. Corporate life sucks for most people. Feeling burned out by it doesn't qualify you as disabled. In fact, being able to leave a job that is bad for you is a huge privilege. Downsizing is not a bad thing in my world. In my world, if you don't go to work, you don't eat. You might have autism, but if you do, its not because you failed to make it on Wallstreet. (I'm sure there are other reasons these posters place themselves on the spectrum. I'm just speaking to the interaction that is happening here.)

I remember the first time I broke a bone. It was my pinky finger. I had a teeny tiny little brace made by the doctor for it. It was my first broken bone and I felt so vulnerable. I had never experienced anything like that before. I complained about the brace to my friend, who just happens to have cerebral palsy and braces everywhere. She just looked at me -a long, hard look. And then I got what I was doing, complaining about my broken pinky finger to someone who uses a wheelchair and can't brush her own teeth or wipe her own backside. Then we had a good laugh. Because that s**t was funny. And really what else can you do? We are all stars of our own dramas. And all pain hurts. But I do think its important to recognize when you are talking about a broken pinky finger and when you are talking about using a wheelchair everyday, for the rest of your life.

Last edited by somanyspoons on 29 Jul 2016, 8:49 am, edited 1 time in total.

You'reKiddingMe, betrayal sucks.

Somanyspoons, I am not looking for pity, nor do I dismiss your pain. This is the problem with these posts. You see me as a bragger, or worse, and I see you as a survivor. Don't make assumptions about my life and l will not delegitimize yours.

Last edited by goatfish57 on 29 Jul 2016, 9:50 am, edited 7 times in total.

Somanyspoons, I did not find out I had Asperger's until this May, after I turned 63. I have never used any health or support resources from the public sector, not even unemployment benefits. I will get regular, non-disability social security.

Had I known about my diagnosis, I would never have been taken in my leech of a husband. I also would have learned to cope at work many years earlier than I did thinking it was other people who were bad communicators, not me.

I was very lucky to have a mother who sent me for ballet lessons when she thought I "walked like a drunken sailor" as a pre-schooler, and a father who noticed how literal I was and tried to help me compensate for that (unfortunately, that took me decades, and nobody noticed that I never did understand unspoken social rules or subtexts). I was also very fortunate that my obsession with horses kept me exercising until I reached 60 (too many injuries to continue after that), and that my intellectual abilities kept my employers happy enough to overlook my social deficits. However, I did get fired from one job because of my bluntness and face-blindness: among other problems in that foreign assignment, I antagonized an important official I did not recognize out of his uniform.

Now that I have been diagnosed, I'm trying to use my experience to post useful articles about coping in the workplace on autism blogs. Do you feel my participation here and on those other blogs is inappropriate?

I feel that "moderate" autistics are underrepresented. If i were to say i am high functioning people would wrongly assume i dont need any help.
I know more than a few people, both IRL and online who claim to be autistic because (and i quote) "i took an online survey and it said that 80% of people who answered the same way as you are autistic. so yeah, thats how i know".
A requirement to get a dx though is that it "significantly impairs your everyday life"

Not everyone is capable of communicating when they have a meltdown.

The advantage of being on the very very high functioning end of the autism spectrum is that you may have insights that nobody else has--not the doctors who have spent their lives studying autism, not the therapists who have been doing it for 30 years, not even the collective wisdom of thousands on the spectrum that aren't quite so high functioning. In fact, you may be so high functioning that if you act "normally" on this forum, folks will question whether you are on the spectrum or not. Which is often why I respond to posts as I would have years ago, as opposed to how I would at a party or at a work meeting today.

I have a terrible time walking and keeping my balance and I've described as feeling kind of like I'm drunk, which makes sense because it's a problem with my motor skills. It actually gets worse in large places or groups because of anxiety.

No. Would it have been appropriate for me to simply abandon my friend who has cerebral palsy, just because she is so much more challenged than I? Not at all. In fact it would be cruel. Her use of a wheelchair doesn't invalidate the pain of my teeny tiny finger splint. But part of my friendship with her is remembering this about us. Its not ignoring this massive difference in our experiences. Little acknowledgements that let people from very different backgrounds relate without making me sound like a douche, which is, frankly, what happened when I didn't acknowledge her very significant special needs. It would have been a whole different story if I had gone in there with an attitude of "Hey, I know you deal with this brace stuff everyday. Its really freaking me out. Can we talk about that?"

I'm suggesting that you take on a similar attitude here. That you understand that you have privileges in life that most people on the spectrum have not experienced. That doesn't mean that we can't learn from one another, but it does require a little... graciousness on all of our parts. And remember, for me, I'm somewhere in the middle, probably slightly to the more able side of average for the ASD population. And yes, I do try to apply that to my actions here.

BTW, if you take on being more gracious on these blogs and forums, you might want to examine bragging (bemoaning?) about not receiving disability payments. Ouch! That's just so hard for people with significant special needs. Nobody wakes up one morning a decides that they would like to live on subsistence payments from the government. It leaves me with a queezy feeling in my stomach when I read this. There are so many of us who do need these services, and they really struggle with reality of that. They would prefer to be a "normal" working member of society, too. But they aren't. They have needs that neither you or I have. They have gone through things that we can't fully understand, and yes, it is worse, meaning more challenging, than either of our paths.

This is slightly off topic, but I have enjoyed reading posts from mature autistics who have "passed" and the costs it has had for them. I was diagnosed last year, at 60. My life should have been a good deal more successful than it has been, but I had this disability that was invisible even to me. Crashes led to me losing a good career start on a few occasions.

How do I feel about invisible autistics? I feel sympathetic, since I was one.

I am fine with people announcing they are autistic, if they are officially diagnosed with autism.
It doesn't matter about their functioning level, or how different they are from stereotypical low-functioning image of autism.
It is time for changes in how autism is publicly perceived, the stereotypical LFA child does not represent autism in numbers or traits.
Being stuck with the single stereotypical image sets back autism research, education of autistic students, accommodations for autistic adults, etc.

i think people just have too much of a craving for stereotypes to cling to, and if one stereotype is dispelled, another one takes its place. more often than not, public awareness in practice becomes an undesirable side effect rather than actual progress. but that, what you said, really is the point. the people who should know better than to rely on stereotypes, but keep on doing it anyway

Which results in the incorrect assumption that autism is very rare in older adults, because it costs a lot of out of pocket money to be diagnosed as an older adult.

Well I just had a person in my professional life tell me that autism happens when someone steals your soul. And she was NOT KIDDING.

See, I'm rather "invisible," so I have to put up with people saying s**t like this to me because they never think that they are accusing the person in front of them of not having a soul.

So compared to "no soul lady," ALL of your theories are good. Every single one of them. You are all less crazy than this person I just encountered.