Tag Archives: I wish I didn’t have Asperger’s

Unstrange Mind: Expressions of PosAutivity: #AutismPositivity2014

By Sparrow Rose Jones

Autism Positivity 2014 Flash Blog
It’s April 30th. The last day of Autism Acceptance Month. And the day of the third annual Autism Positivity Flash Blog. I didn’t write for the last two iterations. The first one, I didn’t hear about. I was not part of the online Autism community at that time because I was taking a break from the stress of things — I had met my first local Autistic adult and it turned out horribly with stalking and threats. And I was living with a partner who hated autism and Autistic people. I did not know that I am Autistic when I got together with him and my diagnosis was pretty devastating for the relationship (which still somehow continued for another decade afterwards.)

I first learned about this project a few months after it launched for the first time and I was kind of shocked into silence. You see, I have a tendency when frustrated to treat Google as a sort of oracle. I will type a complete sentence in, like “He calls me stupid all the time but I’m really smart.” Once I typed in “My rat died and I’m very sad.” The hits that are returned from these sorts of non-questions are often enlightening, sometimes comforting, sometimes informative.

So I honestly don’t know if I’m the person who typed, “I wish I didn’t have Asperger’s,” but it was so much like the sorts of things I do type into Google when I’m feeling lost and distressed and, with all the stress I had in my relationship and with university and fighting for accommodations no one wanted to let me have and getting accommodations that just made my classmates so angry they bullied me so much I wished I had just dropped the class instead — I did actually drop out of becoming a math major because the attitude toward accommodations in that department was so hostile that I knew I wouldn’t be able to finish the degree either way — with all that going on, I was having a really hard time and so much of my stress and struggle was centered around being Autistic.

I will never know if I’m the person who triggered the first Autism Positivity Flash Blog or not, but it was so much the sort of thing I would have done, that I could only sit in shock and read through all those letters to . . . . if not me, someone exactly like me.

So I didn’t write last year because I was still too overwhelmed by the bigness of it all. I sat and read every single entry from that first year and I cried a lot and, most of all, I felt supported. I was afraid to say anything to anyone about the possibility that it might have been me they were writing to. I figured it didn’t matter, because whether it was me or not, there are so many other people out there who desperately needed to read those words. There are hundreds, maybe thousands, of “me”s out there feeling miserable about the cards life dealt them and wishing they could play any other hand but that one. And I still have no idea if it was me or not, but I’m revealing now that it might have been me because it’s important to know that if you are going to understand what my Expression of PosAutivity really means: it might as well have been me and this project gave me something to rejoice about at a time in my life when there really didn’t seem to be anything good about me or my Autistic life.

I didn’t necessarily believe every word that I read, but it awakened something in me. A few months later, I re-opened this blog. I had shut it down after the bad experience with the local Autistic. I was afraid and I was ashamed. I re-opened the blog and in that first post, I published my photograph and my full name. I was protesting Ann Coulter’s use of the R-word and I was putting myself out there to say “this is who you are hurting when you use that word” and also putting myself out there to say “I am no longer afraid and ashamed. I will be known.”

I could not have found that courage if I had not read all those letters to . . . . someone like me . . . . that were written back in 2012.

So the joy I want to write about today is this: life dealt me a hand but it wasn’t Aces and Eights. Sure, I haven’t figured out what to do with that Trey of Hearts yet, but it’s not a Deadman’s Hand and, what’s more, the cards are merely slips of paper that only carry as much power as the players choose to assign to them. What life also dealt me was a table filled with players who have decided to turn the game into something we all can win. I am seated with great people who want to help me figure out where that Trey goes. I am seated with generous people who are willing to show me their cards so we can all play together instead of against one another.

I still struggle with the notion of “Autistic Pride.” It’s not easy for me. Inch by inch, I approach it. But in those dark times when I am unable to take pride in myself, I can always look around me and take pride in my community. We — Autistics and allies — are strong, brave, loving people. We are people who work hard to make the world better for us and those who will come after us. We are people who will take the time to write anonymous letters of hope and love to people we’ve never met — anonymous people crying out for some relief from the pain. I take joy in my people, my tribe, my family.  We are a loyal people, an understanding people, a forgiving people. I am honored to sit at the table with the wise and noble souls I find myself surrounded by.

I no longer refer to myself as “having Asperger’s.” For one, it’s now a historical term, like Dementia Praecox or Invert or Hyperkinetic Reaction of Childhood. For another, I’ve learned that what I am is Autistic and I have no need for a special label that attempts to place me in some hierarchy of “functioning levels” (and couldn’t place myself there very well even if I tried, since my “function” is so variable from task-to-task and from day-to-day.)

But also, I no longer wish I didn’t have Asperger’s (or autism of any stripe.)  I’m dating someone different — someone who loves me and admires all of me and understands that I am who I am because I am Autistic, not in spite of it. I am on a different life path so I am no longer fighting with a university for accommodations I need but am punished for requesting. And I can now see that being Autistic is not only who I am, through and through, pervasively, but it is something that connects me with a warm, welcoming, compassionate community of the most decent and loving human beings I’ve ever met in my life. Not a perfect community, because it’s made of people are none of us are perfect. But a community that has repeatedly taken my hand and helped me up when  I fell to the ground and lay there, hopeless.

This is what I am PosAutive about. Being Autistic put me in the middle of the grandest community of people I could ever have hoped to find.

 

Original post at Unstrange Mind:http://unstrangemind.wordpress.com/2014/04/30/unstrange-mind-expressions-of-posautivity-autismpositivity2014/

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Autism Positivity Flash Blog


This past April, someone, somewhere googled “I Wish I Didn’t Have Aspergers”. The phrase popped up in a blogging dashboard and struck the blogger as being particularly sad. She wished she could have answered.

We don’t know who it was. We don’t know where he/she lives. We have no idea if he/she found what he/she was looking for in that search.

We do know that search directed that person to a blog. We do know the searcher clicked on it in an attempt to find what they needed. And we do know enough about the challenges of autism to know that person is likely not alone in that sentiment.

So, we got to thinking. What would we say to that person? What if it was a kid, desperately trying to make it through tough years of intolerance and ignorance? What if it were a person who might never stumble across the amazing voices speaking for autism acceptance? What if that person thought himself/herself all alone? What would we say about the present? What would we say about the future? What would we say about happiness? And hope?

Each of us in the autism community –- self-advocates, parent advocates, friends and family, teachers, health professionals—we would all have different messages for #IWishIDidn’tHaveAspergers. But likely we would all try to send the message that there is a brighter future and that friendship and support are out there.

So we asked the autism blogging community (and everyone else) to write a message of positivity to #IWishIDidntHaveAspergers, so that next time that individual (or another) types that sad statement into Google, he or she will find what they need – support, wisdom, and messages of hope from those who understand. We created a flash blog event for the last day of Autism Awareness/Acceptance Month: April 30th, 2012.

This website is a tribute to the powerful responses from the hundreds of people who participated, by reading, writing, commenting, and sharing their stories.

If you have stumbled across this website, we hope that you are able to find solace and comfort, and to know that you are not alone. Welcome to the family.

 

This Autism Positivity Flash Blog Event is the brainchild of Thinking About Perspectives, a group of bloggers committed to increasing autism awareness and acceptance via open and respectful dialogue. We are: 30 Days of Autism, Outrunning the Storm, The Third Glance, Aspie Kid, Flappiness Is, Quirky and Laughing, Life on the Spectrum, Fairy Tale Forgotten, The Aspie Side of Life, and Inner Aspie.

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Just Stimming… Truth Is: an #AutismPositivity2012 post to “I Wish I didn’t have Asperger’s”

This post was originally published at http://juststimming.wordpress.com/2012/05/01/truth-is/ and is reprinted here with permission from the author.

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Truth Is

Author’s note: Yesterday in the blogosphere there was an Autism Positivity Day Flash Blog, sparked by one author noticing that someone had found their blog by searching “I wish I didn’t have Asperger’s.” Due to my own situation, I couldn’t participate, but today is Blogging Against Disablism Day, and I still have something to say.

Sometimes in the morning I am petrified and can’t move
Awake but cannot open my eyes
And the weight is crushing down on my lungs
I know I can’t breathe
And hope someone will save me this time
x

Dear “I wish I didn’t have Asperger’s,”

I want you to know that I understand.

That’s the first thing. This isn’t going to work if we aren’t honest with each other, so, let me be honest. I’ve thought a lot about that mythical cure, and there have been days, many days, when I didn’t have to think at all–when I knew that, if I had a chance, I’d take a cure in a heartbeat.

I need you to know that I understand.

I do. I do. I want the things a cure could give me. I want to have the leading role in my own story, and parts in others’. I want to be able to do the same things everyone else can do in the same way without any extra effort. I want to not feel like a freak. I want to feel safe. I want to be someone my parents can love. I want to know I have a future, and I want to not have to blaze that trail by myself. I want to have worth. I want other people to not think they have a right to me and my space, or else I want it to stop bothering me. I want my words and experiences to make sense to other people, and I want their words and experiences to make sense to me. I want to have to work just a little less hard. I want to have a college degree, a job, and a house of my own, and I want to be able to live wherever I want. I want to be able to assume I’m a person. I want to not have a month out of the year dedicated to my brokenness. I want to be able to assume that it’s not me, it’s them. I want to wake up and not be terrified or already tired.

I want a lot of things.

It’s not a bad thing, to want things.

Check in: can you see, now, that I really do understand? I hope you can. I get a couple of visits from you, or someone with the same keyword search, every week, and I want you to know that you aren’t alone, and you aren’t wrong.

Okay. I’ve been honest with you. Now I want you to be honest with me. Can you look at the list of things I want, and tell me if you see a pattern?

I’ll wait.

While I wait, I figure, I might as well tell you some other things I’d like to stop being. In addition to no longer being autistic, I’d also like to be cured of

-being a lesbian
-being female
-being so obscenely tall

Really. I’d like to get be able to get married to someone I love in every state. I’d like to be able to walk down a dark street without fearing for my safety. I’d like to be able to sit in a chair designed for someone of my height. And none of those things are happening right now, so I guess I can either fight for them to change, or try to change myself.

Okay. Did you find the pattern? It’s okay if you didn’t. It took me awhile to understand it. It’s subtle.

Every single one of those things I want?

Have nothing to do with being autistic.

Really. Not a single, solitary one.

I should have a leading role in my own story. When I don’t, it’s because other people aren’t treating me like a person. That is not my fault. Pretty sure the one in the wrong there is the one who thinks that a disability means you aren’t a person.

Why do I want to be able to do the same things as everyone else? Why is that important to me? If I lived in a world where it was recognized that there are multiple ways to do something and that this is okay and the things I do and the ways I do them are valid and important, would I care? Would I even realize this was something to care about at all?

I would know that I have a future, and that it’s a bright and near and real one, if I knew growing up that autistic adults existed. Guess what–they do, they have for thousands of years, and on the whole, they’re doing just as well as anyone else.

I want to have worth–okay. See, if I had a friend who felt worthless, I’m pretty sure I wouldn’t tell that friend “you’re right, you’re pathetic. Please change everything about yourself.” I’m pretty sure I would tell that friend that the people making her feel worthless were abusive assholes, that she was good at plenty of things, that she was a fantastic person I was lucky to know, and that human worth isn’t some tangible thing we can gain or lose. And if I can say all of that to a friend, and mean it…why can’t I say it to myself? I’m not special. I work by the same rules as everyone else. And that means I am worth something, whether I believe it or not.

I can keep going through these. I do make sense to a few people, who take the time to listen to me the way I need to be heard, and they make sense to me. That is how relationships work, and there are lots of different ways to communicate. I can have a job, a living situation I am in charge of, and all the education I want, with the correct supports, just like everyone else. It is not my fault that the supports I need differ from the majority, and that is not an excuse or invitation to mistreat or discriminate against me. Etc etc etc.

In the end, there are really two things I want when I say I wish I wasn’t autistic or I want a cure. I want to not feel like a freak, and I want to feel safe. Those are hard, scary things to feel and to admit. And, because I’m being honest, I have to ask something even scarier.

What if being cured didn’t fix those things?

Because ultimately, if I took a cure, I’d be surrendering. Instead of fighting for my right to be treated and valued as a human being regardless of disability, I’d be letting go, giving in, and letting myself be changed into someone easier, someone acceptable, someone convenient. And I want to be clear–there is nothing wrong with wanting things to be easier or wanting to feel safe or accepted or just being done fighting. That just means that you’ve been asked to be much, much stronger than everyone else for much, much too long.

But if, in order to be safe I have to stop being me?

Then I’m really not safe at all.

As long as being disabled means being unsafe, then no one is safe. Not really. Disability is a natural part of the human experience according to the ADA. Most people will experience some form of disability, for some period of time, at some point in their lives. So long as we as society keep permitting exceptions to rules like everyone is a person and treat people like people, none of us are safe. Safety earned by staying within acceptable margins isn’t safety at all.

I promised to be honest. Part of being honest is looking at what my words actually mean, what lies beneath them, what ideas are controling are what I say. And underneath every I wish I wasn’t autistic is a I wish people would stop hurting me or a I wish the world had room for me or a if I blame myself, I can feel like I’m in control.

And it’s okay that I feel this way. Well, it’s not okay that anyone ever has to feel this way, but I’m not bad or wrong for feeling it. Neither are you. But feelings aren’t the same as reality, and in the end, if we weren’t autistic anymore, there would still be people hurting others just because they can and just because no one ever told them to stop, and we’d still know that it takes only the slightest deviation before we’re vulnerable again. A cure won’t ever be able to change that.

What will change that is something a lot harder than a magic pill. What will change that is enough people saying enough is enough and doing the hard work of making our world one where everyone is welcome, all communication is honored, and everyone is safe and valued. And that is going to take time, and there are going to be days, still, as we work to make that happen, where you, where I, will wish we weren’t autistic, because sometimes it just hurts.

But it will change. It’s changing now. And you shouldn’t, and don’t, have to. You are amazing and sufficient and lovable just the way you are, and I really, really hope you’ll stick around so that one day the rest of the world can know it, too.

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My Big Fat Family blog to #I wish I didn’t have Asperger’s: #AutismPositivity2012

This post was originally published at http://mybigfatfamilyblog.wordpress.com/2012/04/30/i-wish-i-didnt-have-aspergers-autismpositivity2012/ and is reprinted here with permission from the author.

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My Big Fat Family blog to #I wish I didn’t have Asperger’s: #AutismPositivity2012

This is a flash blog… read on and join in.

A couple of weeks ago, someone somewhere googled “I Wish I Didn’t Have Aspergers”.  The phrase popped up in a blogging dashboard and struck the blogger as being particularly sad.  She wished she could have answered.

We don’t know who it was.  We don’t know where he/she lives.  We have no idea if he/she found what he/she was looking for in that search.

We do know that search directed that person to a blog.  We do know the searcher clicked on it in an attempt to find what they needed.  And we do know enough about the challenges of autism to know that person is likely not alone in that sentiment.

We are asking every blogger in the autism community to write a message of positivity to #IWishIDidntHaveAspergers.  So that next time that individual (or another) types that sad statement into Google, he or she will find what they need – support, wisdom, and messages of hope from those who understand.

And – for those of you who do not blog but wish to join in – please post your positivity message to http://autismpositivity.wordpress.com

Please join with us on the last day of Autism Awareness/Acceptance Month – April 30th – in a flash blog of autism positivity.

Here are my words… the words of a mother.

I have a child with Aspergers and I love him to the moon and back.

Everyone has something that makes them stand out, unique. There is no such thing as “being like everyone else”. Some people wear glasses, some people are over weight, some people are very tall. And some people have Aspergers.

Don’t let it stop you. Don’t let your “thing” define you or hold you back in any way. God makes no mistakes and he knew what he was doing when he created you.

My child is funny, lovable, independent, emotional, loves baby animals, loves swim team and playing magic. He loves his brother and his friends. He likes going to the movies and shooting archery. He gets dirty when he goes outside, reads about castles and knights and loves to play with legos. He does not like to take a shower and would rather be camping then in school. He loves the beach. He cuddles with his grandparents and laughs with his cousins. He is a cub scout. He dreams of being an archeologist.

He is just like every other 9 year old boy I know. And he has aspergers.

You belong to this world. This world needs you.

Friends… please “like” the blog and/or post it to your facebook page to continue the FLASH. The goal is… that is any other person every searches with these terms again, they will find us and know they are not alone.

Peace

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BeBeccaLee to “I wish I didn’t have Aspergers: #AutismPositivity2012 “

This post was originally published at http://bebeccalee.wordpress.com/2012/04/30/bebeccalee-to-i-wish-i-didnt-have-aspergers-autismpositivity2012/ and is reprinted here with permission from the author.

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BeBeccaLee to “I wish I didn’t have Aspergers: #AutismPositivity2012 “


For the past 3 years I have had the amazing opportunity to work with Jerry’s Habima Theatre in Atlanta. This is Georgia’s only theatrical company directed and produced by professionals featuring actors (aged 18 and up) with developmental disabilities. Each year, the cast presents a full-scale adaptation of a Broadway musical to sell-out audiences. Last year I assistant directed and choreographed. Several people in the cast have Asperger’s. I am not an expert on any of the developmental disabilities represented among the cast. However, what I can tell you about the actors/actresses (regardless of what they are diagnosed with) is this:

They are some of the most amazing, dedicated, talented, and wonderful people I have ever met in my life. I learn way more from them each year then what I teach in return.  Through out the rehearsal process we discuss what the actor’s want to accomplish. This ranges from having fun, to learning new things, to hone their talents. And to show that we can do it to.

So I say this to anyone who is made to feel like they don’t belong, or made to feel like they can’t succeed: Yes. You can.

Simple, but true. Turn away from those who tell you no and there will be a supportive community there to tell you yes. Sometimes they seem hidden from you and unfortunately you may have to search. But we are here.

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Fabautistic to “I Wish I Didn’t Have Aspergers” = #AutismPositivity2012

This post was originally published at http://fabautistic.blogspot.com/2012/04/fabautistic-to-i-wish-i-didnt-have.html and is reprinted here with permission from the author.

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Fabautistic to “I Wish I Didn’t Have Aspergers” = #AutismPositivity2012

 
Where do I start? I am often perplexed when I see statements such as “I wish I didn’t have Asperger’s” or “Autism/Asperger’s is a curse”. I wonder what could have happened to make a person feel that way. I hope I don’t come across as judgmental. That is not my intention. You see, I have lived a life filled with abuse. My parents did and said many things to me. I was bullied in schools, church and Girl Scouts by teachers, leaders and peers. I was even bullied by my hair dresser, who used to viciously yank my hair every time she combed it and tell me it didn’t hurt. A family member once pulled a friend of mine to the side to tell them I was stupid and naive. In all of that, I never once wished I was anything other than what I am. Of course I secretly wished for a new family, but never took the blame for what they chose to do to me.
I want you to know that you are someone special.
You matter.
Your opinions count.
You have a voice in this world.
You have a place in this world.
You are beautiful.
You are not to blame for anything wrong that someone else has done to you.
If you have been abused or are currently being abused, know that it is not your fault. It is the abuser’s choice that they do what they do. They have their own reasons and more than likely those reasons have nothing to do with you. Abusers live in their own hell and many times are unable to break the cycle of abuse. This is not an excuse by any means. There are no excuses for abuse. It helped me to know that my abusers were people that had deep seeded problems that had not been dealt with, so they chose to take it out on someone they considered to be weak, me. In all actuality it is the abuser that is weak. They are not strong enough to face their own issues. They are not strong enough to stop abusing and get help. They seek unconventional ways to make themselves feel better which is usually hurtful to someone else.
The most wonderful thing about being Aspie is…
Absolutely, positively outside of the box thinkers
Supportive
Pragmatic
Intellectual
Eloquent in expression, however we chose to express ourselves.
Life can be difficult, no matter what the circumstances. Embrace who you are and all the wonderful attributes you have.
It may help you to find someone that you can talk to, perhaps join a group on face book that makes you feel comfortable and safe; a place where you can share your feelings and experiences in a warm supportive environment.
Don’t give up.

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Kat’s Cafe to ‘I Wish I Didn’t Have Aspergers’: #AutismPositivity2012

This post was originally published at http://katscafe.org/2012/04/30/kats-cafe-to-i-wish-i-didnt-have-aspergers-autismpositivity2012/ and is reprinted here with permission from the author.

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Kat’s Cafe to ‘I Wish I Didn’t Have Aspergers’: #AutismPositivity2012

 

Autism Awareness in Action, A Positive Message about Autism for #AutismPositivity2012

Autism Positivity Flash Blog

It’s hard dealing with autism in the family, and I won’t lie, there are days when I am overwhelmed and out of sorts with too many questions asked repeatedly, (no desire to do) potty-training, too many doctors, and not enough time or therapy to do everything I want to for my children with autism.

But there is one thing I do know – I wouldn’t trade it for the world. As I struggled to write something to “I wish I didn’t have Aspergers” I realized that I was, in effect, writing potentially to one of my own kids, or to Jim.

And as that thought hit me, I realized the greatest fear I have for my boys, all of them, is that they’ll give up on the world around them, give up on themselves, give up on the hope of a future that seems so very far away today.

My message to “I wish I didn’t have Aspergers” is this: DON’T GIVE UP

Don’t Give Up Yourself to Autism

Everyone has a different idea about what autism (or aspergers) is, how to diagnose it, and whether one therapy works better than another, or one diet works better than another.

But at the end of the day, how you react to having autism isn’t found in how you treat your autism. Sometimes, in the ongoing struggle of every day trials, of things that don’t make sense and never will, or situations that are uncomfortable if not downright impossible to deal with, it’s easy to lose sight of the fact that YOU (or your child) is an individual FIRST. Autism is always second to who YOU are where it counts.

Don’t let the stigma of the diagnosis, the thoughts of the uninformed, or your own depression, let you lose sight of that — YOU matter. Not the diagnosis. Not the label. Not whether you make great progress or still struggle. YOU. Let yourself shine!

Don’t Give Up Hope

I don’t know if you are reading this as another parent, overwhelmed with the diagnosis of ASD, as a young adult (or mature one) new to the late diagnosis of Aspergers, or as any other person struggling to understand the diagnosis … hating it, even.

But you shouldn’t give up hope. Not hope for a cure – because I don’t believe in cures for things that aren’t a disease (autism is NOT a disease!) – but hope for something better.

Therapies, dietary intervention, new understanding of neurological and environmental causes – these are being discovered, used, and are successfully helping many with autism spectrum disorders every single day. With time, and effort, you can make the kind of progress you need to feel like you fit in with the rest of the world.

Or course, fitting in isn’t the same as being yourself, always. So please, don’t give up hope that YOU can be YOU, an extraordinary person with something magnificent to offer this world. Keep hoping that the rest of the world will see you as the unique and amazing person that you are.  Because I can guarantee you that others already do.

Don’t Give Up Your Determination

Over the years, a lot of doctors and therapists and teachers and friends, and yes, even family, have told us that our boys couldn’t succeed. That they wouldn’t be able to walk. To talk. To learn. To be … to be as amazing as they truly are. It was hard to hold on to our determination that our boys would NOT be the equivalent on any diagnosis or prognosis, but that they could always be more than some words on a page.

That determination wanes sometimes, when therapy doesn’t seem to make the progress we’d like … but it’s there.

Determination is what helps dry the tears and quiet the fears; it’s what is left behind when others try to dictate who you (or your kids) will be; it’s what you hold onto when you are tired and scared and lonely, when the world seems overwhelming and confusing. Determination will see you through the storms in your life; and help you embrace them and rise above them. Determination is your friend. Never give it up.

From a Mother to Another Parent

If you are the parent overwhelmed and unsure, caught up in too many of the negative things about dealing with autism … give yourself permission to be overwhelmed. Give yourself permission to be unsure, to be scared, to want to give up … but use that emotion.

If you can’t redirect those kinds of emotions, they will overtake you, and they will strip your determination from you. Your child needs you to give them that hope, that determination … the world is a scary place when they are trying to find their way as well. When you are overwhelmed, they are right there in the thick of it with you.

Learn to embrace the positive, the good, the unique, the loving, the innocent, the mischievous … and remember that these are part of your child as well. Help them to see that, and you will appreciate it too.

Don’t give up.

Persevere.

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