I decided to tell all my internet people about my ASD...

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I've got a pretty big following on social media, with whom I share most aspects of my life (it's sort of like performance art at this point, as my boyfriend says) and today I decided to talk about my diagnosis. For the most part people were really supportive, and said things like they also have ASD or know someone who does and me talking about it is awesome... but there were definitely some interesting comments ranging from "I used to work with people who have ASD and you need a second and third diagnosis because I don't think you have it" (based of course off of seeing the stuff I post only) to people with ASD saying "You can't have ASD because you post so much of your life online" and then the classic "I know people with autism and you're not one, you're just a wh*re sl*t and who lied to get a diagnosis & just want attention/drugs" (drugs? what?)

Overall the response is more positive than I got from the people I actually know in real life (who either scoff at me or say "oh I have these traits too I MUST HAVE IT pffffff")

I'm always a big fan of observing how people react to things, since I don't understand most people, so this is really interesting for me. I never thought that the internet at large would be more supportive than people who have known me.

I was very open about being autistic from the beginning. I thought that would be a good way of helping with autism awareness, since a lot of people don't understand it. I have been told that I don't "sound autistic", but I think usually in a positive way, rather than an accusatory way. I talk about how autism effects me to show what doesn't come across on the screen in text. But I also try not to harp on it and just interact like everyone else. On social media like Twitter or whatever, there are always going to be ignorant and hurtful comments. Even other autistic people can be mean to each other. It can be a touchy subject sometimes. I've even had thoughts with some aspies like, "you don't really have autism compared to to me".

It's great that you told, and it's great that you got such a good reaction.

You will always get accused of not having an ASD when you talk about it online. There will always be someone online who will think you are lying about it. Who knows why they think that way. They could be bias about it or have their narrow view on what it is or because they don't like what you post so they think you must not be autistic or you write too well or because you went to college or are married or have kids, etc. I have been accused of lying about it in my blog but I don't take it personally and that person said I just had mental issues and I need therapy lol. I guess have I had "mental issues" my whole life and have been lying my whole life lol and did a good job tricking doctors and my parents. Only thing I have tried faking was normality.

There seem to be three kinds of people who go "Nope!" when you disclose your diagnosis:

1. those who actually care about you and who are denying it because they're afraid for you and what it might mean (and, if they're biologically related, what it might mean for them)

2. those that are on the spectrum as well and think that no one else can be because it makes them feel less special

3. the uninformed who nevertheless let themselves form an opinion.

>sigh< Yep, I've been there.

For unrelated people I know in real life it was mostly like eyeball rolling "oh yeah whatever weirdo"... It already runs in my extended family (plus I've always been "off") so they didn't have much to say. I did get a few people sort of saying they have it and obviously I can't, but mostly #3. What's that saying about a LITTLE knowledge being dangerous...? These were the highlights of the latter category, with a really sweet interjection from a girl whose younger brother has ASD (hopefully the images aren't huge, I'm a pro on social media but forums aren't really my home field)





As I said though there were lots of positive responses, I just hope that I can help bring awareness to the fact that the autism spectrum has many faces & that someone's outward appearance isn't always indicative of their inner struggles. If my parents had known to have me tested when I was a child, it would have saved me 28 years of feeling like I was just wrong & bad at life/school/relationships/friendships/social situations/self medicating with alcohol/people in general... If talking about it makes one parent curious enough to read up & have their child tested, drives one adult who has always felt like they were too "other" to seek answers instead of just feeling like they're broken, I'm happy.




my whole life up until this point

Ugh, those people. I'm glad most responses were positive, though. But holy cow, people are ignorant (not the same as stupid; ignorance is a choice) and bad at English. As I read those remarks, part of my brain was constantly thinking, "How do they expect to be taken seriously when they can't even put together a coherent sentence? They obviously need to learn a little more about comunication and narcisism." <---(on purpose)
But, I suppose, being a public figure even a little bit means dealing out a large amount of tolerance. Good for you for being able to do that.

From the comments posted, people really don't fully understand the concept of the word "spectrum" in ASD.
I didn't have an Internet experience. I did know people who were like "<gasp> I'm so sorry" and "No you don't."

In general I would agree with that, though #2 isn't a universal truth. (Am I the only one laughing at that sentence? I swear I didn't mean it to be funny when I wrote it,but I'm leaving it as is. )

Good point, Ezras. There's quite a lot of awareness of autism now, - people know it exists - but very little real understanding. So anything we can do to help society understand ASD better will be beneficial to NTs and Spectrumites alike.

There's a lot of awareness of its existence but other than the pop culture references or the horror stories that air on daytime talk shows or whatever most people don't have any idea what the people who have it actually LOOK like... like "normal people" (edited to put quotes around "normal people"). I agree with EzraS in thinking that being open shows people what an aspie/autie person really is.

Also I haven't quite figured out yet if you have ASD (as Aspergers isn't recognized anymore) are you considered autistic...?

The diagnosis categories under DSM-V seem to be causing some confusion, because the term 'ASD' is rather broad - although the clinical threshold for getting this diagnosis is stricter than before. As I understand it, if you have ASD then you are autistic, although I think they then go on to qualify this more precisely. Informally, quite a lot of psychologists actually still recognize Asperger's, although obviously this can't be part of an official diagnosis. I wouldn't be surprised if it reappears in a later version of DSM.

I get the impression that at least some of the doubters feel that someone (in this case you) may be saying they are ASD because that person wants to feel special, since this is what the doubter would do. In fact, though, you (or anyone else) is trying to express a diagnosis, question the possibility of a diagnosis, answer questions for themselves, etc.

I am so glad you wrote about the "bad English" -- I do not want to be arrogant (well, maybe I do, but choose not to because that is considered bad social skills), but how is it possible to take people seriously when they can't even spell? And yet they are so happy being doubters and haters. It makes me want to cry.

So, from a newbie aspie -- any advice for how to deal with the deep pain that happens when I tell someone I think is actually close to me (a friend, a family member) that I have been diagnosed with AS and feel 'sane' for the first time in my life, and the response is doubting or total negating of my statement? I don't want to get into the educator role (it is hard enough to understand for myself, as it is), but I also don't know what to do with the knife-like hurt that cuts through me every time this happens. I have started saying 'Why in the world would I lie about something like this,' but even that does not seem to make clear how hurtful their reaction is. Any suggestions/tactics/theories welcome.

I would hazard a guess that people just can't stand to think that someone feels "special" or "different" and wants them to know that they're no better than they should be, or whatever.

It's pretty odd. I've had a lot of fun observing the more negative or trolls among my "fans" (ha) over the past year or so, since i've become more active on social media. They get pretty gleeful and nasty about letting me know their opinions/exactly what they think of me, which is so foreign to me, I can't understand it on an emotional level (as my NT boyfriend does), only intellectually somewhat (unhappy people who hate themselves etc)

Do you get/feel upset when you hear from these haters? I spend a lot of my life confused about how I am supposed to react emotionally. Somethings cut deep (while the NT people in my life seem to be find with them), while other things that makes them upset seem frivolous to me. I struggle constantly with a 'proper' emotional reaction. Is one supposed to get mad/hurt at haters, or just let it go because they are miserable people themselves?

The doctors™ & scientists™ themselves cannot agree to anything.

Send me to every single doctor/psychiatrist on earth & half of them will give me a diagnosis & half will not (and of course I will be suspicious of just about each & every single one of them anyway).