You make me feel disabled. Yes, you.

DISABILITY

When I think about my Asperger’s, I rarely think of it as a disability.  Most of the time, I don’t feel disabled.  I’m definitely differently abled.  There are weaknesses, but there are strengths too. I choose to focus on my strengths and work on my weaknesses.  Even though I prefer not to look at myself as disabled, there are things that friends, coworkers, and family members do that make me feel disabled and incompetent.

You don’t recognize that my body language is almost incapable of lying.

With practice, I have learned the art of conversation. Time has taught me that people really only want others to agree with them.  I can find a way to avoid hurting your feelings by complimenting your ugly dress without lying when you ask “Don’t you just love it?”  I can reply truthfully “That orange color is so bright and perky!” (Yes. The color is bright and perky but the dress is still hideous).   After years of getting it wrong and hurting feelings, I finally learned to look for something I like or agree with and focus on that particular attribute.  My words can express an agreement and hide my dislike for certain things, but my body language is almost incapable.

When I find something distasteful, I frown. I look disgusted.  It’s automatic. I have to remind myself to change my facial expressions.  I have to force myself to relax my face. Relax my furrowed eyebrows. Smile slightly. Nod.  It took many years to master the skill of NOT blurting out my opposing opinion.  If I don’t like you, it probably shows on my face. I have to remind myself not to shake my head “No” when I look at you.  It is almost impossible for me to act like I like you.  Because I cannot fake it, my friendship is genuine.  If I act like I like you, I really do.  Unfortunately, most non-aspies are the complete opposite.  Non-aspies are super friendly to people they like AND people they despise.  They are very dishonest in their interactions with each other. Because of this, they are unable to see the honesty in my interactions.  This leads me to my next point:

You say one thing, but do another and expect me to know what you mean. 

Social norms and rules are hard for me.  I’m a concrete thinker.  I see things in black and white. There is some grey, but not much.  When people say something, I believe them. When they say one thing, but do another it confuses me.  Should I believe what they say or what they do?


pensodd

 The non-Aspie (NA) girl in this comic clearly states she doesn’t like Kay. Kay is fake.  Yet when she sees Kay, she smiles and compliments the very attributes she just criticized.  Does she like Kay or not?  My aspie mind puts it together like this:

  • The NA girl SAYS she doesn’t like Kay but then ACTS like she does.
  • This NA girl must ACT the opposite of what she SAYS.
  • Wait!  She ACTS like she likes ME.  Does that mean she doesn’t?  Does she talk bad about me when I’m not around?
  • What do I believe?  Why is this so hard?

And Non-Aspies wonder why we hate socializing.  If I asked this NA girl about Kay, I can assure you she would say that she TRULY likes me, but not Kay. I am special.  I am different. I am not like Kay.  Yet the next time she is around Kay, she would be smile and compliment her and display every external sign of friendship. Which NA girl is the truthful one? The one talking to me or the one talking to Kay?  I can’t figure it out and it makes me feel isolated.

You make me feel guilty for things I cannot control and belittle how I feel.

Anxiety is anxiety.  Whether you feel anxious because of a tiny mouse or a large group of people, anxiety is anxiety.  People with Asperger’s often have sensory issues. Loud noises, loud places, new places can be very uncomfortable for us.  Even large family gatherings with people who love us can make us anxious. When you dismiss our anxiety with a wave of your hand and a roll of your eyes, you say our feelings don’t matter.  Your dismissal of my feelings increases my anxiety because I feel I have disappointed you. I feel like I cannot do anything right.

Because sensory issues play a big part in our lives, we often prefer specific foods.  Forcing us to try new foods and chastising us if we don’t proves to me that you don’t respect my boundaries.  I am an adult.  I know what I like and what I don’t. I prefer certain tastes and textures.  Personally, I find certain new foods overwhelming – so overwhelming that I will check the menu of a restaurant and cancel a dinner if I don’t feel there are any “safe” foods on the menu.  When you demand that I try a new dish, my anxiety increases.  I don’t like the way it smells. What if I don’t like it?  Then I have disappointed you again. I have failed.

verybest

You don’t respect my need for stasis.

It is common knowledge that people with Asperger’s have a degree of rigidity but we are NOT inflexible.  We like predictable events. We do not like surprises. Respect that.  Don’t drop by unannounced.  If plans are going to change, give us time to adjust. We can handle managed chaos quite well.  As a nurse, I know there is no way to predict what will walk through the door at work. I anticipate this chaos and it is manageable. I know it will be chaotic.  I expect it.  When you know I like predictability yet you change our plans and surprise me, you are saying that my needs aren’t important.  When you surprise me and then act offended that I’m feeling discombobulated, you add insult to injury by making me feel like my natural reaction is wrong.  You make me feel like I don’t have the right to react.

Socializing is exhausting for us.  Most aspies have something they do to unwind. Some read. Some absorb themselves in a favorite video game or television show. We write. We crochet. We build models. We do puzzles. We do anything to disconnect from the world and escape back into our own mind.  We need this time as much as you need oxygen.  Socializing (for us) is the same a s physical workout is to you. It is draining. We need to recover.  When you don’t allow me to have my down time, you force me over-exert myself. I feel like I’m running on fumes. I’m short. I’m snippy. I’m completely exhausted.  When you act like my need for downtime is selfish, you make me feel like I can’t be myself  – like I have to be like you. You make me feel like the person I am is not enough.

When you do accommodate my needs, you are vocal about it.

Although you think you are, you aren’t being supportive when you say things like:

  • “I know Pensive doesn’t like to eat anyplace new, so THAT restaurant is out of the question.”
  • “You don’t have to try this appetizer even though I made it special because I knew you guys were coming. I know how you are with new foods.”
  • “I know how you get.”
  • “No. Go have your down time or whatever it is.”

These statements are all passive aggressive.  They imply you are trying to support me, but the support stops there. Asperger’s is a neurological disorder.  If I had a stroke instead of Asperger’s, would you say “I guess I’ll have to help you dress yourself, AGAIN?”  Would you complain that I often spilled while struggling to feed myself? No.  You wouldn’t. But you complain about accommodating my Asperger’s. You make me feel like a burden. You make me feel toxic – like I ruin everything I touch. You make me feel like the world would just be better off without me since I am just so damn difficult to deal with.

every1

You talk to me as if I am simple-minded.

Having Asperger’s does not lower my IQ yet I have had people suddenly start speaking to me as if I have an intellectual disability after they learn of my diagnosis. These are people who are supposedly aware of what it means to have Asperger’s. People with family members who have AS. Yes, I have Asperger’s, but that doesn’t mean you have to speak to me in one syllable words as if I were a toddler.  While I may lack social skills, intelligence is something I pride myself on. Talking to me slowly and clearly while nodding your head “yes” only makes your ignorance even more obvious.  If you are not sure what I need, ask.  My speech is not impaired. I assure you I can tell you exactly what I need.  When you talk to me like I am a small child, you dismiss me as an intellectual. You rob me of the attribute I am most proud of.

You do these things.

You do.

The people I love. My friends. My family.  My coworkers. In one instance you shrug your shoulders and roll your eyes to dismiss my Asperger’s and anxiety, but in the next instance you act as if I am so disabled by my Asperger’s that accommodating me is a burden.  Which is it?  Is my Asperger’s non-existent  or is it SO existent that it burdens you? You make me feel less than. You make me feel disabled.  You make me want to hide inside my mind because the fear of never being good enough is too much.

What can you do?

  • Don’t pretend to like me if you don’t.  You can be polite without being friendly.
  • Be honest and straightforward. Say what you mean. Mean what you say.  Don’t say it mean.
  • Respect my boundaries. Don’t force me to do things/try things I don’t want to do.
  • I am not neuro-typical. Please don’t expect me to be.
  • Recognize that I am a planner.  Let me know as soon as plans change.
  • Let me have my down time to recharge.
  • Don’t be passive-aggressive.
  • You don’t always have to accommodate me.  If you want to go, and I don’t – go anyway. My feelings will not be hurt. I would probably rather hear about it than actually be there.
  • Talk to me the way you would want me to talk to you. Don’t patronize me or talk down to me.
  • Research Asperger’s. Ask questions.

 

It boils down to respect.  Respect my limitations and celebrate my strengths with me. Just like you, I am more than just my weaknesses.

 

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170 thoughts on “You make me feel disabled. Yes, you.

  1. Excellent and concise! With a myriad of spectrum behaviors I felt very vindicated reading your communications to a world that is just now contemplating the immense potential in neurobiology… i.e. diversity is good. To be great is to be misunderstood… though I feel you eloquently conveyed a lot. Thank you. :]

  2. Really insightful, and at the same time relatable despite not having asperger’s (to my knowledge). I learned a lot, and I think this post can stand true for most mental disorders. I have a lot of anxiety(and blog about mental health every Sunday), and I think these things are good to keep in mind no matter what situation you’re in: be respectful, and have empathy for other people so they will have it for you as well. 🙂

  3. No matter how hard you try to convince, the world is ever ready to pull you down. Just love yourself and chill over. Accept yourself…. you are not disabled you are uniquely abled. Your post is honest and transparent to the brim.

  4. If I wrote something so eloquent and concise as this, I would feel freakin proud.
    I have family with AS. I myself have…. Well I have no idea, apart from diagnosed md A lot of the issues you described here (not all of them though) are extremely familiar to me.
    Yeh definitely going to read anything you write from now on (no pressure 🙂

  5. Well I’m NA but that NA girl is terrible. That’s why I prefer friends with no filter between their brain and their mouth, because I hate dishonesty. And hey, a lot of us like to disconnect from the world sometimes too.

  6. I don’t write many remarks, however after browsing
    a few of the responses on You make me feel disabled.
    Yes, you. | Pensive Aspie. I actually do have 2 questions
    for you if it’s okay. Is it only me or does it give the impression like some
    of the remarks look like they are written by brain dead individuals?
    😛 And, if you are writing at other places, I’d like to keep up with everything fresh you have to post.
    Could you make a list of the complete urls of all your shared pages like your
    Facebook page, twitter feed, or linkedin profile?

  7. Pingback: Deviant, Disabling, Distressing: Asperger’s | Build a Villain Workshop

  8. I feel as if I wrote this. No, I know I didn’t, but it’s as if you took a bunch of the thoughts going through my head about people in the world at this time. I just don’t understand most people, well, hardly anyone except for a few of my family members, e.g. my children and my sister. I’ve been sure that I’ve always had “this syndrome” from the day I heard about it and researched it more thoroughly than necessary, but never been able to bring it up and begin a diagnosis. Sad, really, but do I really need to be labeled? No. I have many of those already.

  9. Oops! :-). I had a stroke a few years ago and I was in the hospital for 6 weeks. On the third week I felt like I was going crazy, that my mind was splitting. I even said to myself, I think I’m going crazy I think my mind is splitting. Then, the most supernatural presence was in the room. It felt like an angel or Jesus was standing right besides me. I heard these words spoken to me, Start putting it all back together. And, this warmth came over my head and I was fine. It was like Jesus was speaking to the storm and he said, Peace, be still! And, my mind was at peace. The raging waters were made still. So, I just wanted to encourage you that the author of life can calm the waters of life and give you rest, and your mind can be at rest in the love of God.

  10. Pingback: Spot Light: Pensive Aspie: You make me feel disabled. Yes, you. | The Puzzled Palate

  11. Just wanted to say great post:) I think its important to be reminded of how we may come off towards people and to keep our behaviors in check. Everyone has a right to their own feelings whether or not its someone elses fault is irrelevant. I do see all sides here and agree with all of them because everyone is unique in their ways of thinking and that ito me is true respect. Thank you for this post, it really helped me keep my awareness of how I treat others:)

  12. Got to say as an autistic myself reading what you’ve put I can make so many comparisons too. It’s so great that we share our experiences. Thank you. I like that you use you’re voice you inspire me to use mine too. 🙂 from AutiWomanDifferentBox share the love ❤️

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