There is no such thing as an Autistic Adult

Autism only occurs in children.  Because it is a childhood disorder, as an autistic child leaves adolescence behind, the symptoms of their autism will gradually decrease and disappear. By the time the person is an adult, they will be completely Autism-free. They will have no need for speech or physical therapy. No need for mental health services. They will be fully functioning adults – ready to get a job, go to college and begin their new life without autism.

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Of course this is ABSOLUTELY, 100% NOT TRUE, but this is something I am told every day by the media and organizations that claim to “support Autism.”

When I first suspected I had Asperger’s, I immediately began looking for more information about a diagnosis and support. A google search of Autism and Jacksonville, FL was hopeful. So many resources! CARD (Center for Autism and Related Disabilities). The HEAL (Healing Every Autistic Life) Foundation. Jacksonville School for Autism. The Learning Tree. There is even an annual Autism Symposium every year!! Surely I hit the Autism Support Jackpot, right?

Wrong.

The Autism Symposium was laughable. The folder they gave us talked about the speakers and their massive qualifications, but the packet contained nothing useful for a person WITH autism. When I asked the woman in charge if she knew of any resources for adults, she looked at me as if I had just asked if I could pull an alien out of my eyeball. She actually said “Did you Google it?”  *Sigh*. Thanks for that illuminating advice, princess.

Although this was an “Autism Symposium”, they didn’t list any kind of resources at all. The speakers spoke at a collegiate level about the genetic makeup and studies being done to identify the “autism gene.” They spent HOURS focusing on ‘what CAUSES Autism’ at the genetic level (eyeroll). Another “how can we cure ‘em” symposium. I didn’t care what *causes* Autism. I wanted to know what to do with it. I wanted to know more about it but not on a cellular level. The lights were too bright. The speakers were too loud.  For an “Autism” symposium, it was NOT sensory-friendly.  Every person at my table was disappointed with the lack of useful information given.

I kept trying.  I called the places from my Google search. Each place only works with children. Each place I called referred me to the next because they did not know of any services offered to adults. Referral after referral led me on a wild goose chase until the circle was complete. They were all referring me to each other – each apparently unaware of the services the other was offering. It was disappointing and disheartening.

I asked “What happens to kids after they turn 18?”

“They age out of the system.”

So… they DON’T need services anymore? They’re somehow amazingly cured?

No. They are just denied help.

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They are denied help at a time in their life when they need help the most. At 18 yrs old, children are graduating high school and getting ready for college. They are transitioning from dependent to independent living for the first time in their lives. They might be going to college – away from friends, family, and their support system. I cannot think of a worse time to rip their mental health services away.

After failing to find an “autistic support organization” that helped Autistic adults, I tried psychologists. Even though I have very good insurance, I was once again told “We only work with CHILDREN with autism.” Or “We don’t accept insurance. You would have to pay out-of-pocket” (at the cost of at least $100 an hour.)

If I couldn’t get a psychologist to speak to me with my Blue Cross insurance, how will my autistic brothers and sisters get help? According to the US News and World Report, over 50% of people with autism are unemployed. FIFTY percent. They are most likely on disability. They probably have Medicaid for their health insurance. If psychologists aren’t taking Blue Cross, you know they aren’t taking Medicaid.

So what happens when Autistic kids turn into Autistic adults?

Nothing.
Absolutely nothing.
No support. No services. No autistic organization reaching out with social skills/employment skills.
Nothing.

What really chaps my hide is that so many of these kids are brilliant. They could flourish in college and excel in the real world if it weren’t for their social anxieties. Instead, they often can’t handle it. They feel much safer at home, surrounded by friends and family. They drop out. They remain dependent. They may end up on disability and Medicaid instead of learning the social skills they need to function in the working world. Instead of graduating college, our autistic young adult college drop-out is probably going to be on disability for the rest of his/her life (60 more years) because there were NO services to help him/her transition into independent living. At the rate of $721 per month, It would cost over $500,000 to pay disability for 60 years. Surely it wouldn’t cost 1/10 of that to provide mental health services.

I was lucky. I found another woman with Asperger’s who was a counselor.  Insurance was not accepted, so I had to pay the $40 a session out of pocket. Thankfully, I was able to afford it for a short while. She helped me understand how Asperger’s affects me and those around me. She pointed me in the right direction.  I learned most of what I know about Asperger’s through the internet from Google searches and online support groups. (Thank you Facebook.)

Unfortunately, online is NOT enough. Aspies struggle with interpersonal communication. Although it is EASIER to communicate from behind the monitor, it doesn’t teach us the skills necessary to speak to others in person. It doesn’t teach customer service. It doesn’t help us with the dreaded eye contact. It doesn’t teach us to function in the real world.

We need more.

Autistic kids grow up to be autistic adults and we are failing them.

So what am I doing about it?

I have emailed ASAN (Autistic Self Advocacy Network) to start a chapter here in North Florida.

I am going back to school this fall as soon as I figure out which degree would help me reach my goal of being able to provide counseling to other autistic individuals: A Master’s in Social Work or a Master’s in Psychology. I already have my Bachelor’s in Nursing.  I’m doing my research on this now.

What about you?  🙂

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:

 

 

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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 ❤

 

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?

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.

 

Goodbye Small Fry: Asperger’s and Grief (part one of two)

There were four of them. Four girls, but Vanessa was always the smallest.

My daughter Ali and my oldest niece Christina were born in  1995 – just two months apart. Immediately inseparable. Both had blonde hair. Both were calm, logical, book-reading girls. When they were small, people used to think they were twins.

My stepdaughter Tori and my youngest niece Vanessa were born four months apart from each other. They were both two years younger than their big sisters.  They were so very much alike. Both were brunettes. Both were girly-girls. They loved to sing and dance and shop and drive their big sisters crazy.  Together, the girls were my Fantastic Four.

My youngest niece Vanessa was always tiny.  I even called her my “small fry”.  She may have been small in size, but she was big on personality with a big, beautiful smile to match.

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Pictured above:  L-R on the rocks:  Daughter Ali, Niece Vanessa, Niece Christina,
Pictured on the Right: In the back, daughter Ali, Niece Christina. In the front, Niece Vanessa, Son Joe, Stepdaughter Tori.

The girls have grown up together. From diapers to driver’s licenses – always together.  I look through my photos and see picture after picture of them smiling, playing, laughing.   Family vacations to Disney, Universal Studios, Holiday World.

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Pictured above: Stepdaughter Tori, Daughter Ali, Niece Christina, Niece Vanessa. Son Joe in the front
Pictured to the right, Ali, Vanessa, Christina

We’ve always been close.  We’ve always lived near each other.  My brother and my niece’s mother divorced when the girls were five and three, but I stayed close to the girls and their mom. The truth is, I couldn’t bear the thought of not being close to them.  We all lived in Arizona. When I moved to Illinois in 2000, my nieces and their mom followed soon after.  Together again.

In 2012, my husband and I moved our family to Florida.  We didn’t feel bad.  The girls were getting older.  They were busy with their teenage lives. The oldest girls – Christina and Alison – were going to be seniors. Soon they would be off to college.  It was time for us to relocate.

Christina and Ali  graduated high school last year – May 2013.  Christina was old enough to drive, and last summer my nieces drove down to see us (and the beach).  The girls were together again.  They took an overnight road trip to the Wild Adventures amusement park four hours away.  They went to the mall and the beach. They were teenagers being teenagers.  Two 18 yr old and two 16 yr old girls.  I wanted them to have this time together.  Life after high school and college changes everything. People get married. They move away.  Life pulls even the closest people apart.  I wanted them to have one more good summer vacation before the older girls went to college.  We didn’t know then that it would be the last time we would see Vanessa.

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Pictured above: The girls at the Wild Adventures Theme Park June 2013. Vanessa, Tori, Christina, Ali
To the right: Selfie in the car June 2013: Christina, Tori, Ali, and Vanessa

At the beach they made a crazy sand castle and put their intials on it: CAVV.   They took turns posing with it. Below is Vanessa and their castle.

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Sunday, September 29th, was just like any other day. It was just after six in the morning. I was on my way to the hospital to go to work when I got the call.  Vanessa’s mom said she needed me to come right away.  Vanessa had fallen and hit her head. It didn’t look good. They had life-flighted her to Kosair’s Children’s Hospital but she wasn’t responding. Could I come now?  I called in to work and turned the car around. I stopped long enough to pick up my daughter Ali. My husband stayed home to watch the boys.  My stepdaughter was in Tennessee with her mom.  There was no way she could come with us. On the way from Florida to Kentucky, phone calls kept coming in.  I spoke with the nurse taking care of my niece. Pieces of information filtered through: pupils fixed and dilated. Aneurysm.  Hypoxic brain injury.  I am a nurse. I knew these terms.  I knew what they meant but I couldn’t process them. I just needed to get there.

We drove all day and made it to the hospital late that night.  The prognosis wasn’t good.  She didn’t fall and hit her head.  She collapsed because an aneurysm in her brain burst.  She told her mom goodbye, walked out her front door and collapsed.  A neighbor started CPR almost immediately and they took her to the local hospital. At first, they thought there was hope so she was life-flighted to Kosairs, but there was nothing that could be done.   It was already too late.  Her brain was already too damaged.  The team of doctors had pronounced her brain dead that afternoon.  In order for her to be officially brain dead, the doctors would do a second test the next day.  If she failed those tests, she would be considered brain dead – legally dead.  Dead? I couldn’t even process that word. Look at her there.  She looks perfect.  Dead? no. No. NO. NO!!

I think brain death is the absolute worse death possible really.  It makes you feel so helpless.  I’m a nurse and even with all of my nursing knowledge I could not seem to believe what the nurses and doctors were telling us.  I’d look at her little chest rising and falling and her heartbeat on the monitor. I would hold her hand. She was so warm. But they kept saying “she’s gone.”  In my head, I knew it was the respirator that was making her breathe still, but… I just could not convince my heart that she wasn’t sleeping.  I can remember kissing her on the forehead and her mom saying “You’ll wake her up…” and cutting herself off and crying as she caught herself.  We all wanted her to just wake up. Please. Please. just. wake. up. Vanessa. Please. But she didn’t. She couldn’t.  She never did.

The next day, October 1st, the doctors tested her again.  She failed their tests for the second and final time.  They declared her dead via “brain death”. It was official. They were so nonchalant.  We were so heartbroken. Dead.  But..she’s so warm.  Not a scratch on her. We were reeling.  They were saying she was already gone, but looking at her lying there,  it didn’t feel like she was gone.  Even though we didn’t want to, we knew in our hearts they were right.  The brain does not heal.

Vanessa had only had her license for only a couple weeks, but she had agreed to organ donation.  We wanted to honor her wishes.  Two days later, she became an organ donor.

The hardest thing – the thing I still struggle with – is knowing that in order to honor her wish to be an organ donor, we could not turn off life support.  Her heart would beat and her lungs would breathe until the transplant team took her organs.  It felt like we were sending her into the operating room to die even though they had officially pronounced her ‘dead’ the day before.  We honored her wish, but it hurt so much to not see her take her last breath. To not be there and hold her hand. It felt like we were sending her into the OR to die alone.  I don’t think anyone can understand how that feels. I know her gift will help others avoid the grief we are going through now and I don’t regret it.  It just hurts.

The organ donation people were very nice.  They made fingerprint necklaces for us with paint and clay. They put her handprint on canvas for us. This is what we have now. Memories and photographs. Fingerprint necklaces and handprint canvases. It just isn’t enough. ❤

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Pictured above: Vanessa’s handprint on canvas-my daughter Ali painted the scene around it.
Pictured to the right: A collage of pictures of Vanessa.

Vanessa was well-loved. She baked crazy cupcakes and brought them to school.  She played soccer. She swam. Because she was so small, they called her Baby V.  After she passed, her classmates at William Henry Harrison High School in Evansville, IN wanted to do something to honor her.  They decorated an overpass with the words”We R Vanessa Strong.”  They knew she loved Marvel’s Avenger’s and made “Vanessa’s Avenger’s” shirts. Without being asked to, they sold the shirts to help raise money for her services and medical care.  They sold out of the first batch of shirts within the first few hours.

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At the first football game after she passed, the stands were filled with fans wearing Vanessa’s shirts. Even the opposing team – Castle High School – filled their stands with Vanessa’s shirts. So much love.

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Pictured above: Vanessa’s High School: William Henry Harrison High School

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Pictured above: The opposing team: Castle High School

I think about those words “Vanessa Strong” and it makes me smile.  I think about her tiny little frame. Her great big smile.  Her silly faces. Her fun-loving attitude. Her laughter. Vanessa Strong?  I don’t know.  Vanessa Spunky. Vanessa Enchanting. Vanessa OhNoShe’sNotSingingAtTheTopOfHerLungsAgain.  Vanessa WhatDidYouPutInThoseCupcakesNow?  But I would have never thought Vanessa Strong.  That’s what we are.  That’s all we can be now.  Strong.

We love you small fry and we miss you. Every day. ❤

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Pictured above: Stepdaughter Tori and daughter Ali in their Vanessa’s Avengers/Vanessa Strong shirts.

If my story has touched your heart, please take a few seconds to comment. ❤

You have the power to change lives.  Register to be an organ donor at your local Department of Motor Vehicle or here –> at Donate Life

 

Thank you Leonard Nimoy.

I was not diagnosed with Asperger’s until last year, but I knew I was different long before then.  As a child, I knew I was not like the other children. By the time I was in 4th grade, the school told my parents that I had completed all the reading comprehension textbooks that were available, and I was reading beyond high school level.  They didn’t know what to do with me.  To keep me busy during reading time, I was assigned to the kindergarten class to be a teacher’s aide.  While I was proud that I could read so well, I didn’t like being different.

I had difficulty relating to peers.  My black and white thinking made it difficult for me to understand the world of grey other children lived in.  Other kids seemed to be able to throw caution into the wind and just play.  Spontaneity was a foreign concept for me.  I wanted structure and predictability.  My ideal playground was a thick book filled with delicious facts about my latest obsession.  Teachers didn’t help.  They made the other children aware that I missed reading because I was different.  Almost every day I knew I would hear “Does anyone besides Pensive know the answer to question 4?” even when my hand wasn’t raised. The intellectual gap between me and my classmates was a chasm that was often too wide for me to cross. Their thoughts seemed childish to me.  I had difficulty understanding social situations and making friends.  Although I was the first person others went to for help with academics, I was the last person anyone picked to play with – if I was picked at all.  This is a trend that has continued into my adult life as well.  I wanted to play, but I didn’t know how.  I wondered if there was anyone else out there like me.

I only had to look as far as my television.  There he was.  Brilliant. Intelligent. Brave. Logical. Spock.

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Star Trek.  Boldly going where no man had gone before.  In my mind, William Shatner’s dramatic acting style paralleled the way my peers over-dramatized their issues.  Every. Thing. Was. Just. So. Darn. IMPORTANT!  Captain Kirk’s actions were often guided by intuition and emotions.  Like Spock, I often thought his choices were reckless and not well planned.  He would get the crew into a dangerous situation and then rely on Spock to help get them out.

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Spock, on the other hand, was exactly like me.  He reveled in logic and information.  Reading and studying a new subject was “fascinating”.  He longed for friendship, but he didn’t know how to be a good friend.  He never seemed to grasp the hidden social rules that dictate human behavior.  With a beanie cap on, he could almost pass for human except that he couldn’t. His behavior and his manner of speaking would give him away every time.  No matter how much he tried, people always knew he was different and they treated him differently because of it.  Even though he was intelligent and had studied human behavior, he struggled with interpersonal relationships. He often did not understand sarcasm and inside jokes. I would even say he is a bit naive when it comes to human behavior.  It annoyed me that Captain Kirk often appeared smug when he understood some human nuance that Spock did not.  It felt like he was saying “because I am more human than you, I am better.”  Sometimes I just wanted to wipe that smug smile off of his face.  Spock was the only person I had “met” that was like me.  I was certain Vulcans were real.  I was certain I was Vulcan.

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**picture description **  Picture of Leonard Nimoy as Spock wearing a beanie cap from Star Trek episode “The City on the Edge of Forever”

I was also certain that my parents could not be my parents. My mother had an 8th grade education and I surpassed her intellectually before I completed 4th grade. My mother read and wrote at a less than 6th grade level.  She relied on me to write letters for her and read road maps for her.  A part of me viewed her as inferior because I was smarter.  It was another example of how I felt a lack of intimacy and connection to other humans. I asked to see my birth certificate many times.  I often thought I was adopted. I was sure I was somehow related to Spock.  My parents assured me Vulcans were NOT real, and I was not Vulcan. With confidence, 10 yr old me announced that if I wasn’t related to him, then I would MARRY Spock when I grew up.  I don’t think my parents had the heart to tell me that Spock was old enough to be my father’s father and the Star Trek I was watching had been filmed more nearly two decades before I watched it.

As I grew up, I realized that Spock (and Vulcans) weren’t real.  Still, I loved Spock.  Although Vulcans were not real, SOMEONE (Gene Roddenberry) created him. Maybe, just maybe, he created him after someone he knew. Someone like me. That meant that somewhere out in the big, wide world there could be another person like me.  A real-life 100% human Spock.  That gave me hope.  The idea that there was at least ONE person in the world like me kept me going when I felt isolated and alone.  I wanted to know more about the man who played Spock.  In true Aspie form, I researched and read everything I could get my hands on.

Image*IMAGE DESCRIPTION: Leonard Nimoy wearing a tshirt with a picture of Spock on it. Above Spock’s head, a speech bubble says “Leonard Who?” ***

With all my research I discovered I didn’t just love Spock. I love Leonard Nimoy as well.  In real life, Leonard Nimoy is very different from the Spock character he portrayed. Spock focuses on Science and Nimoy is all about the Arts and Philanthropy. He is not only an actor and director, he is also a poet, an artist, a photographer, a women’s rights activist, and a very free-spirit.  He is the opposite of Spock in almost every way.  In his autobiographies, he discusses how he often had to fight to keep Spock true to his character. Writers and others involved with Star Trek would want to change Spock and make him more “human”, but Nimoy would not allow it. I can imagine it would have been easier for Nimoy to let others turn Spock into someone more like the man he was in real life, but Nimoy was a fierce advocate for Spock. I love him for not letting others change Spock.  I love him for recognizing that Spock is perfect – just the way he is.

Every time I get a twitter message across my phone from Leonard Nimoy, I smile and thank the heavens that he is with us for another day. I really love that man.  He invites the entire twitterverse to be his family – his honorary sisters, brothers, children, and grandchildren.  He is the epitome of acceptance.  For me, there is a symbiotic relationship between Spock and Nimoy with Spock representing my Asperger’s and Nimoy representing a person who has complete, unconditional acceptance for those who are different.

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Just as the writers tried to make Spock more human, the world tells individuals with Asperger’s that they need to change and be more “human”.  Before my diagnosis last year, I didn’t understand why I was different.  I felt I was unlikable and unlovable if I tried to be my true self.  I spent my life constantly evaluating and re-evaluating my behavior and personality to learn what I could do to make myself more acceptable to others. It felt so unnatural to keep changing my behaviors, but I longed for acceptance.  I could not understand why others didn’t see the world the way I did.  I could not understand why I didn’t see the world the way did.

I know now that my brain does not process information the way most of the world does. While the world processes everything in color, my brain processes information in black and white. I don’t know that I will ever be able to fully understand the complexities of interpersonal communications.  Like my favorite Vulcan, I can study it, but I don’t have the same inborn ability to absorb it by osmosis as the rest of the world does. So at best, I can study it and provide a fairly decent imitation of it. It helps me get by in the world but sometimes I feel that I will always miss that connection that the rest of you have naturally.

Since my diagnosis, I have met many other aspies online and most of us share a common love for the logical Vulcan.  We relate to him. We see ourselves in him.  We see how the rest of the world loves and accepts him and we hope someday they will love us and accept us as well.

So, thank you Leonard Nimoy for being the free-spirited, kind-hearted person you are.
Thank you for all the times you preached against bullying or mistreating those who are different.
Thank you for portrayal of Spock and for fighting so hard for someone who is so very different.
Thank you for keeping Spock true to Vulcan form.
Thank you for the hope Spock gave me and the feeling that I am not alone.
Thank you. Thank you. Thank you.
May you continue to Live Long and Prosper ❤

With love, from one of your honorary grandchildren,
Pensive

Maybe if you just tried harder… Things you SHOULDN’T say to someone on the spectrum.

This blog does not need a long introduction. The title says it all.

I wanted you to hear what NOT to say to someone with Autism/Asperger’s directly from the mouths of people who are on the spectrum.  Here are their words:

Simone B. – But you seem so normal!

Lorrain M.  – Oh but you have FEELINGS. Those people don’t FEEL.

Tama G.  – You can’t have it. You work with people. You talk normally.

Helen H.  –  Oh, everyone feels like that though.  That’s normal!

Tama G.  –  It frustrates me when people are surprised I have a husband and kids as if we couldn’t possibly have the same expectations from life. I am married with four kids. I was married and had my kids BEFORE I was diagnosed. I have had people say “I bet you would not have had kids if you knew BEFORE you had your children. Wow. What shocks me is that they somehow believe 100% that they are being some kind of supportive!!

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Vicki C.  – You are too old to have that. Only boys have Asperger’s.   Also,  “So that is your excuse.”

Ashley M. – Are you actually autistic or just a little? Aren’t we all just a little autistic?

Tabi J – I dislike it when people don’t realize that no two people with autism are exactly alike.  For example, both my brother in law and I are both diagnosed with Asperger’s, but he lives in an apartment building that have FULL TIME support staff while I live in a mobile home with my husband that we OWN. Not only that, he also takes about 20 some pills a DAY, while the only medication that I take in my life are OTC pain relievers, cold medication, and the occasional antibiotic.

Isabel C. –  It makes me nauseous when someone tries to negate my diagnosis in any way. I know best for myself what’s true and if someone really cares they will always be supportive in their words. Most of us who’ve figured out we have Asperger’s hold it kind of “dear” because it explains so much about who we truly ARE, so to have anyone negate it is negating the truest part of ourselves.

Julia R. – I know you’ve asked about what not to say to someone with AS, but what I find frustrating is how others can sometimes behave around people with AS. Both my older brother and I have had to deal with people staring at us strangely when we talk, and at times even looking as if they are uncomfortable having to speak to us at all. Sometimes the people we’ve just spoken to won’t even respond to us directly, but rather talk around and over us as if we’re mentally impaired, not aware, or not even really present. It’s annoying when I say something, and everyone within close proximity suddenly stops speaking, stares at me, and may not even respond. Often I’ll just keep talking, or find someone more open to connect with, but the stares and/ or silence can be frustrating.

Debby T.  – I always thought you were a bit weird!

Claudia A. – I think the worst thing I have ever personally been told was a very definite and confident “NO, you are not,” when I told someone I was autistic. Just like that.

T. A.-  I’ve seen Parenthood, Rainman, Sheldon Cooper, so I know all about Asperger’s

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Anne L. –  “Are you some sort of savant?  What is your special ability?”

John T. – When I try to explain that some of my behaviors are because of my Aspergers: “that’s a convenient excuse”.

 Chris H. – You’re too pretty to be autistic?!!

 Colin S. – Your grammar is too good to be Autistic. Plus, you know too much to be autistic.

Sara R.  – “I have a 7-year-old cousin with Autism, you’re nothing like him! You’re not Autistic.” Like what the heck, because I’d naturally be soooo much like a 7 year old BOY as a 20 year old FEMALE.  -.-

Tama G. –  We are all on the spectrum somewhere, aren’t we? Autism is popular now. It is the new adhd. Everyone gets diagnosed with it!  If you are a parent you get told “you must be devastated!”

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Aletheia K. – I don’t really like crowds much, does that make me autistic too?

Pam M. – “Why do you want to pin a label on yourself?”

Rachel T. –  Silence. Nervous laugh. Change of subject.

Ashley M. – But there’s nothing wrong with you.  Are you supposed to be disabled now or something?

Sara H. – You know there’s no cure for autism?

 Erika S. – I still see you as a normal person!   You must have a very mild type, because I don`t see it, and I have met autistic people. They look different.

Samuel H. – Wow, you must be really high functioning!

Corey F. – But you’ve always been like that!?!

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Renee M. –  It’s just a phase, you’ll grow out of (whatever behaviour)” Or “You could change/overcome that if you really wanted to”

Chace W. – Grow up.  Act your age.  Why can’t you just ____? If you’d only try harder.

Kelly Q. – You don’t really expect us to accommodate all your needs?

Riley K. –  You just need to…(insert “think more positively/stop being a know it all/lighten up/stop taking everything so seriously.)  You know, you could learn to be more social if you really wanted to.

Erika S. – You were not like this before. You could cope more. The whole AS is just an excuse

Susan D.  – well, we all have our issues/problems – said by a bully

Sue A. – “You don’t seem like an ‘Asperger’s patient’ because you look me in the eye when you talk to me and there is a connection.” My old shrink actually told me this!

Aletheia K – Everyone feels left out/friendless/alone in a crowd *sometimes*

 

When someone shares their Autism/Asperger’s diagnosis with you it is because they trust you. Listen to them.  For the most part, we are very straight forward and logic-based. If you are unsure how to be supportive, just ask.  “What can I do to support you?”

Dismissing our diagnosis by claiming “everyone feels that way” or listing the reasons we couldn’t possibly have Asperger’s does not help us.  Just because you’ve seen Max on Parenthood or Sheldon Cooper doesn’t mean you know what people with Autism are like. If you’ve met one person on the spectrum, you’ve met ONE person on the spectrum.  Are all non-autistic people alike?

“Asperger’s is sometimes called the Wrong Planet syndrome. This is because we feel like we come from a different culture and have a different way of perceiving the world”  – Tony Attwood.

For many of us, our diagnosis is something precious to us.  We’ve spent our entire lives feeling disconnected from others. We’ve spent our entire existence trying to modify our behavior to fit in and feel connected. Our Asperger’s diagnosis allows us to finally understand WHY we are so different.  It answers a lifetime of questions for us.  Once diagnosed, people with Asperger’s often seek out other people with Asperger’s and find that  – for perhaps the first time in their life – they connect. Don’t dismiss our diagnosis because you can’t understand it.

What CAN you say?
Watch for my next blog and see.  🙂  Until then.. remember this advice from the Autistic Self Advocacy Network:
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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.

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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.

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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.