Friday, January 17, 2014

You're Autistic?! No Way!

I don't always tell others about my AS diagnosis, whether I know them well, or not.  Sometimes I do, but with quiet trepidation as I await the response. I will not lie. The response determines how likely I might be in future  to disclose my diagnosis. I always blurt it out quickly, through the sound of my pulse rushing in my ears making me almost anxiously deaf to the world for that moment I await the response from the other party. I lean in, hoping for some sign of acceptance... I almost always get one of two responses.

The most common- "I would never
know." or "I can't tell." and sometimes, "Well, you certainly have done well for yourself!"

Then the other, which I hate the most.....silence. It's a wide-eyed look of disbelief, and shock. I don't know for sure what these people are thinking, but I can surmise it is either that I am lying, crazy, or they just don't know what to say.

I don't like the congratulatory praise of passing as normal. It feels fake to me.  It feels wrong to celebrate not looking autistic. I know what the other person is likely meaning, and I know it is rarely a statement that they make out of ill will.  They are simply saying what they're thinking, and what they're thinking is that they'd never guess I have a developmental disability.  There are no clues most of the time, and the little ones that are there don't seem to add up to much more than quirks, as far as they can see.  I don't condemn others for this viewpoint.  I actually do see some value in them seeing something that is outside their idea of what autism is, or more descriptively what it isn't. They don't think it is a well dressed, woman who drives, runs a household, and does all the things most moms, wives, and women do.  Autism doesn't always mean those things, but it can. For me it does.

The second reaction....silence is the the one I hate. I hate it for so many reasons, but mostly I think it's because it's ambiguous.  I don't know what the other person thinks for sure. There's something about a proclamation that's left dangling out there without a response that feels naked, vulnerable, and invalidating. It's like when you ignore a child's question because it's off-topic, or not appropriate.  I feel like that child in this instance.  Sometimes, I do think people don't know what to say back to me, but others I am certain is because they think I am making it up. They are postulating that I am one of those trendy people that jump on all the new diagnosis's taking on all the symptoms like a hip hypochondriac. 

In some ways the silence is more insulting when I detect it's there in the capacity of disbelief.  The majority of people in the world have a very narrow idea as to what autism is.  It's so many varying ways of thinking, being, processing and feeling that I could never cover the full scope of what it means to be autistic in just this one post. Just like NTs, we are all different. I have met many autistics that I can identify with.  I have met many that I can't at all. I have met some that I flat out don't like. I have met a few that broke the stereotypes of what even I thought it meant to be autistic.  Yes, even those of us on the spectrum aren't always aware of how others on the spectrum differ from each other.  We're all learning. So, when I am met with that blank stare when I disclose my AS diagnosis (usually when talking about my boys) that says "You? No way. If you're autistic, then we all are." It does feel like a dismissal. They don't know me, or my life. They don't think about what autistic kids might look like as adults. I write extensively on this blog about the many challenges that I face daily from social issues to face blindness to sensory issues.  Those are not things that I would share with anyone anytime. Just because I am not highlighting my struggles it doesn't mean they're not there.  Of course being autistic is about so much more than the struggles, too. It's about the way a person processes  the world, and that has it's good, and bad points. I don't in any way want to put the idea out there that in order to prove my autistic-ness that I feel that I need to pull out my portfolio detailing all of my struggles, and pain that proves to others that I am indeed autistic. I think that is a common retort, though.  I understand it's place in that when we feel our (or our kids's) diagnosis is dismissed by another person.  Their doubt feels like an invalidation of all the trials of being misunderstood, unsupported, and denied can entail, so in return we often want to list all the ways in which we have indeed suffered, but I tend to hesitate to go in that direction.  Not because I have not ever suffered, but because I don't want them to walk away from me with the idea in mind that autism = struggles. I don't want their pity.  I want them to respect me as a unique person with a lot to offer the world in part because of my autism, not in spite of.

So, what are some ways a person can respond that would feel more accepting to you? If you have some suggestions please leave them in the comments section below.

Some of mine are:

"That's interesting. Tell me more."
"Really? What is that like for you?"
"When were you diagnosed?"
"Does that mean your sensory system works differently?"

21 comments:

  1. Yeah, the "you've done well for yourself" one is kinda yuck. You have NO IDEA what it took to get me to this place and if I even think I'm at a good place or not. Why not ask me if I'm happy? Or even better, what I'd love to hear is, "it doesn't change a thing about what I think of you. Is there anything I can do to help?"

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    1. That is a good response, and one that I have heard before, though not very much.

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  2. I don't really know, it always feels slightly awkward anyway. I suppose I prefer it when people ask what that means (for me), rather than rely on whatever they were thinking about autism to begin with.
    I have come up with a response, for when someone reacts in a way I am uncomfortable with. Basically it boils down to saying that there's still a lot unclear and a lot of prejudice about what autism means, even among professionals. In that way I tell them that their comment says less about me, or autism, than it says about ideas surrounding autism. And I don't blame or hate them for these prejudices, because they're widespread. Then they still have the opportunity to ask me.

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    1. It does feel awkward anyway. You're right. If the person seems open to talking about it I will keep going, and say something along the lines of what you said here, but if they don't indicate that they'd like to hear more I often just drop it, and never bring it up again.

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  3. I posted this 2x already, once it went poof, and then it did post, but seemed to have gone missing later... weird!

    Anyway, I think I prefer any kind of response that is accepting or asks for more information, rather than sticking to whatever the person thinks they know already.
    I have a response ready for when people react in a way I am uncomfortable with, like the ones you mention. It boils down to saying I noticed there's a lot unclear and a lot of prejudices about autism, even among professionals. That way I tell them their remark says more about ideas on autism, than it says about me. And I am not hating/blaming them, because the prejudices is widespread.

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    1. I'm sorry my blog seems to eat people's comments! I often wonder how many people try to comment, but their comments never get through. Thanks for letting me know about your comments coming up missing. I was able to find them in the spam folder, and publish them. :)

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  4. I get a lot of different responses. Sometimes people say things like: "Oh, well so and so's son is really Autistic, not your kind of Autistic." Sometimes people act as if I should be carrying around my diagnosis in my pocket to whip out and show them like we carry cards that prove we're members of the club. I don't talk about it much with people but I do write about it on my blog. I have talked with others who want to understand it. I do have struggles every day that I deal with, but I also have so many positive things about me being Autistic. I'm working on being very proud of that instead of taking all the negatives people/society say about Autistic individuals and I'm working on making my positives known to me. That said, I also acknowledge my current struggles and my past ones because, for me, that's important for me to accept about myself too. I love this post. It's excellent and I hope it gets passed around a great deal and read. I think it's a wonderful eye opener for people. Thanks for sharing this. :D

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  5. This is a challenging topic. I'll be the first to admit that when my son was diagnosed with autism, I was woefully ignorant of what autism meant. You're right that most people have a very narrow perspective of what autism means. I mean, I've devoted myself to learning about autism over the last 12 or so years, and I am just getting to the point of asking the questions you mentioned at the end. Thanks for sharing your experiences, as it really helps me interact with others on and off the spectrum in a more informed way.

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    1. Thank YOU for being so open to learning! It's always awesome to see parents, and professionals talking to us for our perspectives.

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  6. If I respond with silence to vulnerable and important information a person tells me, then it doesn't necessarily "mean" anything speifically. It may express acceptance ("I don't have anything to add, I'm listening and taking in what you tell me"), it may express disbelief ("that doesn't make any sense at all") - but then I would be more likely to ask questions or express skepticism, or it may express another feeling. However, mostly it expresses just what it is - a pause, that I need time to process it and have nothing to say yet, that I am not ready to react straight away, I may react later after I have reflected about it and become able to formulate my reaction as words and have questions. What is the purpose of trying to say something just to say something if I don't have anything to add? Taking information in, and expressing feelings and thoughts, are two entirely separate processes and one doesn't automatically trigger the other (expect for extrovert people). I'm actually having the problem that people tend to make assumptions about what I am thinking when I don't say anything - typically anxious assumptions - when in fact I am not even ready to define what I am thinking anytime soon.

    People may stay silent for many different reasons, including respect, needing more time to process the new (perhaps shocking) information.

    Perhaps your assumptions about what other people think or feel when they stay silent are correct, I wasn't in those situations and perhaps there were obvious clues that supported your assumptions. But based on just the silence in itself, your assumptions could perhaps be wrong - with you projecting your worst fears onto what you think the other person may think. That is just social anxiety, and a totally common mechanism in that type of situations. If that is the case, then it is quite likely that common cognitive behaviour therapy strategies against SA could help a lot with these type of situations - such as help you be less nervous in advance and less affected by peoples' reaction and less prone to make assumptions about their reactions. I am not saying that peoples' reactions "are all in your head" or something like that, just that your assumptions about peoples' silence could be projections. I based that on personal experience with a lot of diifferent people making assumptions about my silence, and usually incorrect assumptions, so it is quite possible to misunderstand silence.

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    1. I rarely just tell random people. As a matter of fact, I don't think I have told anyone that I can think of off the top of my head that didn't work with my kids in some autism related capacity, other than a couple family members. That went very badly, so I never told any others.

      The silence can mean different things for different people, but considering the follow up conversations I have had with the silent responders I have to say it usually means that either they don't believe me, or they just didn't retain the info, because it didn't make sense to them. They will make remarks later about my boys to the tune of how their brains are different than ours, and we'll never know what it's like being them, despite the fact that I have told them I am also on the spectrum. So, I know that they for whatever reason disregarded what I said. Sometimes, I will correct them, but most of the time I will not, because I don't see the point. The only time I see the point is when staff is really misguided about their approach, and not listening to me as a parent. Being a parent *should* be enough for them, because parents do know their children best, but anyway, it's hard for them to deny that I might have a better idea as to what my kids need due to my neurology being similar to theirs.

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    2. I see. Yes, I can understand why that response bothers you, it sounds like they pretty much ignored the information and pretended you never said it ... awkward.

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  7. Possibly when you feel that it is necessary to mention to people that you have a mild form of autism you could say, "I have a mild form of autism and I process information in a unique way." Say it in a positive way that you are proud of who you are. Then they might be more curious about how your mind processes information. I have found that many people "mirror" your attitude about yourself. You have unique ways of problem solving that so called "normal" people don't have. I have also found that most people also have a disability of some sort...they are full of anger...they have ADD, they are too naive, they have trust issues, and the list goes on and on. No one is perfect and we are all trying to live our lives the best we can. Anyone who thinks that they have it all together are lying to themselves...there is always room for improvement. So be proud of who God created you to be (you are awesome!) and love yourself and others.

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    1. Thanks for reading, and taking the time to comment!

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  8. People tell me that I don't sound autistic all the time, or they don't even believe that I'm autistic. I find it offensive because I feel like people are dismissing a part of who I am.

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    1. I'm not sure why people don't just keep those sorts of comments to themselves. It always amazes me how much people lack manners, and WE"RE the ones who need social skills training? I don't always think that's the case!

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  9. oh man.
    before i was diagnosed, and i had read the book on it, you know, and was positive, 100% sure i was an aspie, i had people tell me "we are all a little autistic". like, what? downplay the serious, deep, and real issues, struggles and situational confusion ive suffered from all my life? and still as an adult i have no idea social situations even with people ive known since i was 5. i still dont know what to say, what to talk about, im still unsure how they will take things that i say, i still dont understand how i can know someone since we were little kids and still not be close friends... when i look around and anyone whos still friends with someone from that long ago is like besties for life, but not for me...

    i felt insulted and condescended to, as if they knew more about aspergers than i did (i read the entire book in just a couple weeks, have THEY? noooo)... and i knew. to have people say things like that makes me feel as if they somehow cant believe im actually autistic, because if im autistic, wheres the preconceived notions of the autistics who are unable to talk, or live on their own? arent we all supposed to be living in homes? goes to show that even though that stuff stopped happening years and years ago, how far and how long the myths will persist... im getting long winded.

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    1. The myths really do persist! I think that now that many have accepted that there is a mild form of autism people are really busy now putting us into categories of "Well, you can use a computer, talk, work, (or whatever other thing) and my kids can't do any of that, so you do not have the same kind of autism as my kid." So, they will now often admit that we do have autism,. but just not autism autism, ya know? Maddening!

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  10. I love the way you are able to write and communicate your thoughts. Not because you are doing so well for yourself but because I struggle with the verbal "window" that leads to my thoughts and needs. I know how I feel what I want most of the time but I cant always organize that info into a sentance that gives others the view. When I do manage to get some of it out. .. its more like a fake window that requires the person to look into a mirror that bounces off another mirror, and another, until they find a hint of whatever I was speaking of. But the mirrors are not high quiality mirrors they ate more like distorted funhouse mirrors. What you write gives me a real example of myself to share with others. Not just an example that I will have trouble applying to myself and my life because your life is so much like mine, in the way you write. I too am a hfa female with kids, a car ,and house, and in a relationship with a "normal" guy. Im able to fool most but my struggles are very much there and real, even if others do not see them or look past them.

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    1. What you describe is how I often feel when having to verbally tell someone something important that is not concrete. I could never explain it the way I write it verbally. I often say that the real me shines through here, and on FB way more than in person. I'm most authentic in writing.

      Thanks for your comment!

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