June 19, 2014

Spot Light: Pensive Aspie: You make me feel disabled. Yes, you.

Today's post is from one of my favorite "digital" friends, Sherri. She writes the powerful blog Pensive Aspie: Amusing musings from an Aspergian on planet Earth. From the first night that I "met" her, she has been a great resource for me- I have even joked with her, saying that she is my Asperger's magic decoder ring. She has never met my daughter, but she understands parts of her more than I do. Raising child with Asperger's is an interesting journey and it always helps to have someone who can help me fill in the blanks. 

Having said that, I asked Sherri if I could share this post to help spread acceptance for those on the autism spectrum.  So without further ado, I present you with an "amusing musing," courtesy of the pensive aspie herself.


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.

-The Pensive Aspie
____________

What I love most about Sherri's blog is her honesty. Her take no prisoners and "Yes, you did just step on my toe" style is both fun to read and truly an insight to her mind. If you are interested in reading more from Sherri, I have a few favorites that I would like to suggest:


Sherri would be happy to answer any questions you may have about Aspergers or her article.
Feel free to comment below or contact her directly on Pensive Aspie's website.


40 comments:

  1. This is such a great post. The thing is, people are always in a rush and don't take the time to understand that other people have different needs sometimes. This is an important reminder.

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  2. I remember learning about this in psychology. I think this post speaks volumes and instead of sympathy I have so much respect for you not victimizing yourself.

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  3. Thank you for sharing this glimpse into your life and your mannerisms. I don't actually know anyone personally on the spectrum, so reading things like this really helps me to understand!

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  4. I've always been of the opinion if you don't want an honest answer then don't ask the question. Friends ask me all the time "Don't you love my outfit" and if I don't I respond with "It's not my style but if you like it more power to you." So Sherri you're a better person than I am ;)

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    1. I used to be extremely honest but quickly learned that my brutal honesty was hurtful. I can remember telling one of my friends that a pair of checkered pants she loved made her butt look like a "picnic table". Although I could see the correlation easily, she was not amused.

      Since then I've learned that for the most part, non-autistic people want to hear what they want to hear. You can tell because they ask the same question repeatedly in different ways. A friend tries on a dress. It's gaudy and makes her butt look way too big. It's not a flattering style for her figure.
      "So, do you like the dress?"
      * "I think the other dress was much nicer."
      "Yeah, but I mean, this one looks really nice on me, doesn't it? It shows off my hips"
      * "I really liked the colors in the other dress" (still trying to remain tactful when I want to say "You definitely CAN'T miss your hips in that dress")
      "I know but doesn't the blue in THIS dress bring out my eyes?"
      * Yes. It does do that. (Now I've realized that all the person wants to hear is that the dress is amazing and it is perfect blah blah blah)

      That is why conversation is so difficult. An aspie would say "Tell me that I look great in this dress. I love it and I'm buying it." Then there is no confusion. We wouldn't ask for an opinion unless we really wanted to know what you thought of the dress. One day I'll get it all figured out. ;)

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  5. Thank you for sharing this! I like Talk to me the way you would want me to talk to you. Don’t patronize me or talk down to me.That is something i live by and expect others to also.

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  6. This is so seriously inspirational! I love the work you are doing to educate and advocate for Asperger's. This is also the first time I've heard the use of the term "Aspie."

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    1. She actually told me that there was a term for me, too! Since I am a neuro-typical parent to a child on the spectrum I am an Aut-mom! I wear it proudly!

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    2. I love the term Aspie. Aspergian. I love both of them. I use them as terms of endearment. They are so much less formal than "person with Asperger's".

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  7. This is a great post. My husband had one student (in particular) who had Asperger's and it was interesting how he would work with him. My husband was very aware of the student's needs and worked to accommodate them - and to make sure felt accepted. (I really wonder how the student is doing now. He was a really cool kid.)

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    1. Teachers like your husband make all the difference in the world. There is such a need for teachers who go the extra step for kids. I have been blessed because my youngest son's teacher has done that for him. I can't thank her enough for appreciating his Asperger's instead of segregating him for it.

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  8. This post is amazing. I like that you have a sense of humor about Asperger's. The quote about not putting "dis" in front of "ability" did it for me. I've cut back with using the word disability a lot. I hope you guest most more here. I look forward to reading your posts. I'm going to go visit you on your blog too.

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    1. She is an amazing writer isn't she?!? I will see what I can do to get her to guest again in the near future:)

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    2. Thanks Tiffany :) I hope you like my blog. I don't blog often (about once a week) because I am so very busy, but I love how it gives me the opportunity to meet new people. (Like you!)

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  9. This is such a well written and informative post. Thank you so much for sharing yourself with us and letting see a glimpse into your life!

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  10. That comic is such a good view into asperger's. My middle son is diagnosed with PDD-NOS and he's very much like that as well.

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    1. Thank you! :) It took me a little while to make it. That comic embodies the whole reason friendships have always been so hard for me. I think women (sorry if I offend) are especially bad at talking behind each other's backs. I never know what to believe. I always feel lost when it comes to those types of conversations.

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  11. I think those are good tips to follow when dealing with everyone, Asperger’s or not. We all have different things that we like and don't like. It would be great if others could accept and respect our differences.

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  12. As someone who suffers from some physical ailments that cant be seen as well as an arsenal of mental health disabilities, there are a lot of things you mention here that carry over to other illnesses. I think your tips are spot-on and perfect for every human, not just those with a different-ability!

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  13. This is such a hard condition to understand. However, finding out that my brother-in-law has this explains a lot and helps other deal with him in ways that's nicer for everyone.

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  14. I think it is clear we are aware and you are right, Time for acceptance,.

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  15. You make some very valid points in this, people need to pay more attention to how the speak and react to people. Sadly now in days people tend to be so quick to speak before even taking a second to think about what they are going to say and what type of impact what they're saying will leave one someone.

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  16. Thanks for these tips. I love your honesty, and learned so much!

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  17. Thanks for sharing. These are wonderful tips. I love the comics and quotes you used.

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  18. I think her tips were great in dealing with people whether they have a condition or not! It's sad that we treat people differently - we all are different, some just in more extreme ways.

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    1. You make an excellent point. Although people with Asperger's are different - it is a spectrum disorder so now two aspies are alike. It's the same with "normal" or "alltistic" people. It is about respecting our differences and boundaries regardless of whether or not we have a disability. We're all different. <3

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  19. That is a lot of great information. I am sure this will help many people.

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  20. This is a wonderful post. It has taught me a lot about those with Asberger's. I love the phrase "differently abled.

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  21. Thanks for sharing all this information. You picked a great blogger to guest post!

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  22. I love the honesty, perspective and information in this post. We are all differently abled and need to be more understanding of that. That's what makes us all special and unique!

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  23. I couldn't agree with you more about being confused as to why people say one things and do another. Its so confusing. I am a true believer of constructive criticism. Thanks for sharing this, I love understanding other perspectives on life.

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  24. Thank you for sharing this with us! I hate that people would think you have a disability...so rude and immature.

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  25. I absolutely love this post. I work as a teacher with students on the spectrum……it is so powerful to hear this! Thank you thank you thank you!

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  26. I am just amazed. Thank you all for your lovely comments. <3 A big thanks to Carly for allowing me to have this opportunity. I'm still pretty new to blogging, and she has just been so nice to me. Thank you again ladies! <3

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  27. What a powerful post! I even learned a few things I didn't realize that I was doing. Thank you!

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  28. Reading this post, opened my eyes and helped me understand Asperger, I am going to pass it on to my friend whose daughter was diagnosed as a young teen. They have been having a difficult time adjusting. I think reading your first hand experience will help the Mom better understand her daughter. Thank you! {And kudos to you for speaking up!}

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    1. Send her to my blog :) I have had so many parents email me with questions. I'm always open to answering. I wish someone would have understood me when I was a teen. <3

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