What’s IN that? Don’t worry. You’ll love it. *sigh*

Autistics and new foods. We sniff. We scan. We ask “What’s IN that?” We may even poke it with a fork or touch it first. I’m more than certain our inability to hide our emotions makes for some great faces during all of this sniffing, prodding, and inspecting.

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I want to start this blog by sharing something that my wonderful friend (and fellow Aspie) Aletheia Knights shared with me.  After sharing this comical (but TRUE) link about “picky eaters” on her Facebook, she described the Autistic struggle with food better than I ever could.

Please check out the link and then read on.  For those who don’t know me personally, #16 is a spot-on impersonation of me.

http://www.buzzfeed.com/robinedds/terrible-moments-in-the-life-of-a-picky-eater

 

 

Did you really read the link above?. ^^

 

 

 

You did?   Ok, read on.
My friend Aletheia says:  “This is all so true. Like many people on the autism spectrum or with other sensory issues, I am a resistant eater – a term some medical professionals use to distinguish our issues from ‘picky’ eating. Most picky eaters can learn to broaden their tastes, and may feel comfortable trying a new food after having been exposed to it a few times. For resistant eaters, this is almost impossible. Trying anything outside our culinary comfort zone, whatever that may be, is almost unthinkable – it’s as if it doesn’t even quite register in the mind as falling into the category ‘food’ – and can be a tremendous source of anxiety. For many people, trying something new is a fun adventure; for me, it’s an actual accomplishment. If you tell me to eat what’s served or go to bed hungry, I won’t even have to think about it – I’m just tremendously relieved I have an option other than ‘eat it.'”

Amen buddy.

In the past, I have tried to describe the tremendous anxiety I feel at the thought of trying new food, but Aletheia nailed it.  It is an anxiety I have carried with me my whole life. Even as a child, if a friend invited me to stay the night, I had to know what was for dinner first.  Casserole – with all the foods mixed together? Without even asking my mom, I would say “Sorry. My mom says no.”   Fried chicken and mashed potatoes? “Let me ask my mom!” 🙂

As I have gotten older, I realize that fear is irrational yet it is still there. Always there. The same way others fear teeny little mice (irrational too!), I fear new foods. The only difference is that it is acceptable to go running out of the room at the thought of a six ounce mouse. It is not acceptable to run out of the room at the thought of a six ounce dish of calamari. Calawhat?  No thank you. Give me the mouse any day.

If it were just the food, I think I might be able to tackle it, but it’s the social pressure that comes with it. People EXPECT you to try new foods. They EXPECT you to want to eat your food mixed together and *gasp* touching.  There is almost zero sympathy for those with food anxiety – regardless of your age. Children are mocked and belittled and told their feelings don’t matter “Just TRY it. Here…. open your mouth! What are you? A baby?”  The mocking doesn’t stop when childhood ends. The social pressure ADULTS place on each other to try new foods (especially gourmet food) is as bad as the social pressure teenagers put on each other for sex or drugs or drinking. “Come on? Seriously?  You won’t try it? One little bite isn’t gonna hurt you. You’d like it if you just tried it. Come on.  You know you want it.”    No. Actually, I know I do NOT want it. Thank you very much. My  personal favorite is when they know you have an aversion to a certain food (mushrooms… *shudder*) and they tell you “But you can’t TASTE the mushrooms.”  Yes. I guarantee you I can.  When you find a certain flavor repulsive, it is even more distinguishable.

Whether someone is on the spectrum or not, please be considerate of their tastes.  If they don’t want to try a new food, let it be. More for you, right?  It doesn’t matter if they’re 8 or 98.  It isn’t right to belittle or pressure someone into doing ANYTHING they don’t want to do.  Just because it’s easy for you doesn’t mean it’s easy for me.  Are you ready to carry a jumping spider in your palm? A long-tailed rat on your shoulder?   A glorious smooth green snake around your neck?  What about snuggling with a bat? Come on. Just try it. You know you want it.

I mean.. I would.   🙂  Who wouldn’t love a face like this:

 

 

Jumping_Spider

 

A note to my readers (if you survived that gorgeous jumping spider).  I just want to tell you that I continue to be amazed by you.  All of you. I love when you connect with me on twitter and facebook. The letters you write me are so treasured. Your tweets and posts on facebook make me smile. I love when I see one that makes me say “I knew I wasn’t the only person that thought that!”  I am just so blessed to have this opportunity to ‘meet’ all of you and so, so grateful for social media that has allowed us to connect.  ❤   There is a whole *universe* of people like me out there. People just like you.  My heart is just so full ❤

 

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It’s YOUR fault that I behaved badly.

There is a power that some people possess that has always confused me.  Certain people have an uncanny ability to avoid accountability for their actions by twisting and stretching the situation so that you are the reason the problem exists. These people are emotionally volatile and by the time they’ve finished, they can almost convince you that it’s not their behavior that is the concern. It is your REACTION to their behavior that is the problem.

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These people have a magical way with words that always manages to clear them of any responsibility or wrong-doing.  Their ability to  flip a situation around and make you feel guilty is mind-boggling. Usually it happens so fast that you don’t even realize it until all the drama is over.  I’ll give an example:

You have a friend you go to lunch with.  Maybe she realizes she’s being rude. Maybe she doesn’t, but when she wants the waitress  she waves her hand in the air, wolf whistles and shouts “Hey! Over here!”  It embarrasses you. When the waitress does come, she is really demanding and rude. “I know they give you onions on the side, but I want you to dice them for me.”  “I want lemon for my tea but don’t put it on the glass. Bring an extra dish for it to sit on.”  “This butter for my rolls is too hard. Go find some soft butter.” On top of all that, she leaves a lousy tip. $1. No matter what her meal costs, she always leaves a dollar. It’s gotten to the point where you don’t even want to go out to lunch with her anymore because it is so embarrassing. If you just avoid her, you know it will turn into a big deal. You decide to talk to her about it.

You tiptoe. You approach slowly. “There is something I’ve been wanting to talk to you about. When we go out to eat, you are not polite to the wait staff.  You ask them to go above and beyond for you. You whistle and wave at them. You only leave $1 tip.”  Probably you drag this conversation out a little longer but for the sake of the blog, that’s the gist of it.

Your friend immediately reacts.”WHAT? So you’re sitting here trying to tell me that I’m rude? So you’re taking the side of a waitress – someone you don’t even KNOW?  You’re saying that when I go out to eat I shouldn’t ask for my food to be cooked the way I like it because it’s TOO DEMANDING?”

You try to explain, but your friend isn’t listening. She’s intent on making this YOUR fault. Not hers “So I’m at a restaurant paying $2 for a glass of tea and when it’s empty I’m NOT supposed to signal the waitress?!? I’m supposed to just wait until she has the TIME to fill my drink while my food gets cold? That’s what you expect? That I shouldn’t order my food the way I want and shouldn’t expect my drink to be refilled?!? Why the hell even go? Fine. You win!! You want to be that way? Don’t ever worry about going to a restaurant with me EVER again!”

 


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You’re shell shocked. What just happened here?  You check yourself. You ask others if they would deem her behavior rude. Yes, they would. Yet she’s turned it around and made it so you are the jerk with unreasonable demands.

For all Aspies, these types of arguments are hurtful.  For some Aspies who experienced bullying or abuse, these types of arguments are even more damaging. Because so many of us were bullied or endured abuse from our families, screaming and yelling causes us to shut down. It mentally reverts us back to that small, scared child who cannot defend him/herself: that child that just wants to shrink into the pavement and disappear. We are so distraught by the anger and the yelling that we cannot even defend our position. We just want to melt into the wall.

What’s even worse is that for many non-autistic people, fighting like this is acceptable. They scream. They yell. The next day they are fine. We aren’t. We’re still trying to find a logical, sensible solution to the problem. We’re still trying to figure out what part of our approach was so repulsive that the person reacted the way they did. We’re swimming in a sea of lost. More than likely we are blaming ourselves because we’ve always failed at “reading people” that it never occurs to us that the other person is IN THE WRONG.

They say things like “I got mad. I’m  over it. YOU need to get over it too”  AS IF it were that easy for us.  We need to analyze. We want to know why. What caused it? We want to break it down into micro-particles so we NEVER make that mistake again. All the while, never realizing that it wasn’t our fault. 

We have been taught that we are the oddballs – the ones who are different, so when people react differently than we think they should, we automatically assume it was our error. It’s NOT. 

I wish I could tell you how to deal with individuals like this. I’m still trying to figure it out myself. It’s hard when they are your ‘friends’ but it is even harder when they are your family.  Maybe some day I’ll know how to approach them better. Maybe some day I’ll be able to stand my ground. But for now…I’ve taken the first step by realizing that at least this time… this time… *I* am not wrong.

Have you had an experience like this?  How did you react?

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?

Light it up what?? I’m puzzled.

Right now, across the country, across the world, people with Autism/Asperger’s are arguing amongst each other.  And it has to STOP.

There is a large divide in the autistic community.  Many people who have autism/Aspergerer’s feel that Autism Speaks (A$) does not speak for us.  I empathize and understand completely. Autism Speaks strongly promotes the idea of a “cure” over the idea of acceptance. They have no one with Autism on their board of directors. They produce advertisements, small films, etc. about what a burden autistic people are to society. I could go on and on about why there is no love for A$ among the autistic community, but I won’t. A simple Google search will display multiple blogs and many articles that have already been written on this subject, so I am not going to go into it here.  What I am going to talk about is the divide among autistics because of Autism Speaks and why this divide works in their favor.

World Autism Awareness Day is April 2nd. Since 2010, Autism Speaks has been telling the world to “Light it up Blue!” for Autism. Major landmarks in the US and all over the world light up blue starting on the eve of April 1st throughout April 2nd to show their support/autism awareness. It has become quite popular.   The campaign has been successful.  All over the world when people hear “Light it up blue” they think of autism.

Image*image description: Various worldwide landmarks lit up in blue.

Online on different social media sites I see groups of autistics arguing over the Light it Up Blue campaign. In protest of Autism Speaks, some groups proclaim we should “Light it up GOLD!”  Another proclaimed “Light it up in Rainbow Colors!” Other groups are holding polls to determine exactly which color we should “Light it Up” (as if anyone is asking us.)

This same debate continues over the iconic puzzle piece that is used to represent Autism. (Even though Autism Speaks was not the FIRST organization to use the puzzle piece to represent Autism, they are the most recognizable.)  Again, across the interweb in different groups autistics are arguing with each other over this symbol. They argue our symbol should be a ribbon or some other icon. Then the debate continues on what color the ribbon should be. Not blue. Heaven forbid.

While they’re arguing over what color to light it up and whether or not the puzzle piece should represent us, I’m just puzzled.

Don’t they see what they’re doing?

By arguing amongst each other we are failing. And we are failing miserably. Here is why:

Alltistics/NTs/Neurotypical people all over the WORLD are already familiar with the puzzle piece and they LOVE it. They don’t care what we think of the puzzle piece.  I’m a nurse. I have a puzzle piece badge holder. It was a gift from a friend/coworker who wanted to show her support for my Asperger’s.  She has no personal connection with autism, but when she saw a badge holder with 4 puzzle pieces inside a heart, she immediately thought “Autism” and bought it for me.

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I am so grateful she did. I can’t count the number of positive conversations I have had with patients and family members about autism because they recognized the icon.

Just for a moment, let’s pretend “Autism” is a brand name. When people who don’t have a personal connection to autism think of autism, what is the first thing they think of? The puzzle piece.  The entire World thinks “autism” when they see the puzzle piece.  Whether we like it or not, we have a logo that is already recognized all around the world!

We’re wasting valuable time and resources trying to change an already beloved icon. I asked people (non-autistic AND autistic) what the puzzle piece meant to them.  Even among actual autistics, only a sparse few knew that the original logo featured a crying child and signified that people with autism don’t “fit”. Instead people thought it meant we are like a puzzle that is in need of being solved. Others said we are a small piece in a bigger picture. Others said it meant we were unique. As a person with Asperger’s I have always found that the puzzle piece was a very illogical choice if the original goal was to show that we don’t “fit” because a puzzle piece’s only job IS to fit. And you know what happens when you try to force a puzzle piece to fit where it doesn’t belong? It damages the piece(s) involved.

While autistics argued yay or nay to the puzzle piece, one thing was consistent: all of the non-autistics I spoke with LIKED the puzzle piece. The only divide I saw was among us – autistic people. There were so many reasons why some autistics liked/disliked the puzzle piece.  It doesn’t change the fact that the entire WORLD thinks “autism” when they see the puzzle piece. The energy we spend arguing over whether or not we need to fight to change the symbol is wasted energy.  Instead of trying to change an already world-famous symbol, we might try changing our perspective about what it means instead.  Like so many others, I had no idea that the original concept meant we didn’t fit. THIS is what I thought the puzzle piece meant. I still do.

 

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The same goes for “lighting it up blue (LIUB)”.  When I have talked with non-autistic people about the light it up blue campaign they say it means “Autism”.  They don’t say “Autism Speaks”.  The truth is, unless they have a personal connection with autism, the LIUB campaign is just a flash in the pan on their facebook wall. They comment “Yeah, I saw that big ferris wheel was all lit up for autism”.  They really have no clue. Everything is just Autism to them. Not Autism Speaks. Just Autism.

Divided, we fall.  When I see the facebook groups/social media sites with autistic people viciously arguing over the puzzle piece and the color blue, I cringe. I am ashamed.  What do we look like to the outside world? A bunch of people who can’t even agree on a color? A bunch of people arguing over a puzzle piece logo. To the outside world, it looks frivolous.  There are already so many stigmas about autism. Autism Speaks encourages people to think we are child-like, immature, and not able to make our own decisions. We are reinforcing this belief when non-autistic people go online and see we can’t even agree on a color. We’re fighting against each other over a color and we wonder why we can’t get people to take us seriously.

We need to refocus our energy!  I can’t say it enough. We’re arguing over a color. A color. While we are doing this, we remain divided. You know who ISN’T divided? Autism Speaks. They keep moving forward and campaigning for more money while we sit around fighting over the color blue.  It needs to stop.

Instead of fighting an uphill battle to change the beloved puzzle piece or light it up green, purple, or cotton candy colored, we need to use that energy to change what really needs to be changed: Autism Speaks.  In today’s social-media inspired world, companies are bending to public pressure.  We need to spend our energy educating friends/families/non-autistics how Autism Speaks is hurting us.  We need to put pressure on A$ to CHANGE their policies. CHANGE their practices.  We need to encourage them to truly become what they say they are – a voice for people with autism.

Because in the end – changing the puzzle piece and changing the color mean absolutely nothing if we don’t change the biggest source of false information on autism.