I’m jealous of your Asperger’s

I’ve met a lot of different people with Autism and Asperger’s and sometimes I get a little jealous. Maybe I shouldn’t admit it out loud, but I don’t know where else to say this.  I guess I’m jealous.

I go online and talk with other adult Aspies,  Many of them don’t work.  They live at home with their parents. They spend their days focusing on their special interests. They are online as often as they want to be.  They don’t have to get up early. They sleep in. They set their activities to their own circadian rhythm. The collect their shiny things. They flap their hands/stim when they need to. They are basically free. Free to be themselves.

I realize not all Aspies have supportive families, but many of them do.  Their parents are accepting and supportive of their disability. They have been sheltered. Their home is a safe place. The only downside is having to follow the rules their parents establish, but hey.. it is their parents’ house. Sometimes I get a little bit jealous of all that.  I never had that.

Although my mother was never officially diagnosed, I am quite certain she was bipolar (manic/depressive) at the very least. My mother had two moods: Angry and Sad. Occasionally, on the very, very rare occasion she was happy. But she was never just comfortable. She was never content. My childhood was very turbulent and maybe some day I’ll find the strength to write all about it. For now, just for now, I’ll give you a few small details.

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**Photo Description: Me and my Mother **

My mother was a very emotionally unstable person. She had only an eighth grade education, and not a very good one at that.  Her lack of education made her very defensive. She believed there were only two sides to everything. Her side and the wrong side.  If you disagreed with her, you were on the wrong side.  The wrong side brought her wrath – physical and emotional abuse.  I spent my childhood tip-toeing on eggshells.  Although the adage is a joke, in my house, it rang true: “If momma ain’t happy, Ain’t nobody happy.”

My mother had no friends, so I was expected to be her best friend and agree with her no matter what. To side with her always. To be her champion. To defend her even if she was wrong.  For any child this would be difficult. For a child with Asperger’s it was even more difficult.  I was torn between my desire to avoid my mother’s wrath and my strong Aspie compass telling me to always defend what is right no matter who was wrong. Stimming behavior – flapping hands, etc was not allowed. I pulled at the skin of my lip. I still do today. It was the only thing she couldn’t stop me from doing.

I was never allowed to recede to my room and disappear. I wasn’t allowed to meltdown ever. A meltdown would have brought on more physical and mental abuse. “Why are you crying? Do you want me to GIVE you something to cry about?!?!”  I learned quickly to keep my feelings inside. My mother’s love was always conditional. She only loved you when you were doing something nice for her. This behavior taught me to be codependent from an early age and believe my self-worth was based upon my actions. I felt unlovable unless I was doing something to deserve love. The sense of worthlessness she instilled in me took many, many years to overcome. Like many abusers, each violent outburst was followed by gifts.Toys.Things. Because THINGS equaled love. Deeds equaled love. Yes, she had hit me, but she had BOUGHT me these toys to SHOW how much she loved me. And you could not reject those gifts or you were rejecting her. They were meant to be displayed and exalted. It was an emotional roller coaster.  It was exhausting to be her daughter.
Image**Picture descrition: Me with my shelf full of toys. Mon chi-chi’s, Benji dog, Mickey mouse, etc. All to show how much I was “loved.”

I felt trapped growing up. I felt like I was never allowed to be myself.  Because my mother’s moods were so volatile, there was never a way to predict how she would react. For a child with Asperger’s, this is the equivalent to living in hell. We need routine. We are black and white thinkers. We need cause and effect. These things help us feel like things are under control. In my house, the same action did not always bring the same reaction. Having a mother who throws dishes at your head if you forgot to clean out your cereal bowl yet doesn’t bat an eye if you intentionally misbehave makes life extremely unpredictable. I never knew what to expect. Never knew how she would react. Never wanted to go home. Anxious isn’t a big enough word to describe the anxiety I grew up with. I felt caged. Trapped. Pacing back and forth in my too-small container unable to break free.

I had my first job when I was 15 and had my first apartment at 17. I am sure I did terrible at my first job. I know I was terrible at managing my first apartment. I left home to escape her. To escape her cruelty. To escape her emotional demands. To escape that house.  Without meaning to, without realizing it, my mother forced me to learn the skills I have used to survive in the non-autistic world. I had to get a job to get money to leave home.  I had to get out.

So when I moved out, there simply wasn’t an option to return home. I had to learn how to get a job and KEEP it. I had to learn to survive on my own. I am not saying my parents never helped me. My parents loaned me money. My father helped me on many occasions. I would be lying if I said I did it all on my own completely. But I never wanted to go back. Home was not a safe comfortable place for me. There was no one to wrap their arms around me and tell me it was ok that the world was so rough and that I could try again tomorrow. That was a fantasy. A Disney movie. That wasn’t my life.

So I’m a little jealous when I see these grown adults with Asperger’s that still live at home. They have supportive parents who hug them and love them and tell them “everything is going to be OK.” Their parents tell them they are perfect just the way they are. They don’t have to change for the world. Their parents don’t force them to ever take a step outside of their comfort zone. Their home is their sanctuary. They don’t have to pretend to be something they’re not to survive.  I see that as a sort of freedom I never had.

The freedom to feel safe with my own family.
To feel loved unconditionally.
And I’m a little jealous.

But it’s a little catch-22 for me.  While I have some jealously towards those who live the life I never had, for the first time in my life, I feel some gratitude towards my mother who didn’t baby me, didn’t coddle me, and didn’t allow me the option to fail. Because her actions pushed me out of the nest so forcefully, I had to learn to fly. And I did.  I wonder if I would have learned the skills that I have now if failure had been an option. If I had been allowed to retreat to my room and hide under the covers, would I have ever pushed myself?  If I knew in my heart that I could always go home and home was a safe, fuzzy place, would I have succeeded? If my parents had sheltered me from every failure because I was different, would I have tried as hard as I did? Would I be the person I am today? College educated? Married? With children? With two jobs?  Or would I still be living at home, single, free to flap my hands and fidget with my shiny things and have my meltdowns. Free to be exactly who I am all of the time.  I’m not sure. I’m just not sure.  And then I wonder…which one of those things really is free?

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?


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 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.