Monthly Archives: April 2012

From Equality Sets Us Free to “I wish I didn’t have Aspergers” #AutismPositivity2012

This post was originally published at http://equalsuf.wordpress.com/2012/04/30/from-equality-sets-us-free-to-i-wish-i-didnt-have-aspergers/ and is reprinted here with permission of the author.

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From Equality Sets Us Free to “I wish I didn’t have Aspergers’

Don’t.

Don’t worry about how things could be. Don’t try to change who you are. Don’t wish you were something you’re not. That way lies nothing but pain and sorrow. Because the only thing you can do is fail. Fail at being ‘normal’. Fail at ‘fitting in’ with people who won’t accept you as you are. Fail at being someone that you simply are not.

Things suck. I know. We’re told all the time that we live in a world where everyone is treated equally. We grow up with stories about overcoming, and making friend by being ourselves, and then we find out that the world isn’t really like that and you can’t be accepted for who you are.  And that hurts.

But the problem isn’t you. If it was, then there would be advice I could give you to make things right. And there isn’t. There is nothing you can do by yourself to make things better. You can try, you can learn coping mechanisms, and learn how to act ‘normal’, and it’ll help. But you will always, always fall short. And that’s because we live in a world that simply isn’t accepting of differences. It isn’t enough to ‘pass’, because that means hiding something of who you are, and that does a number on your self-esteem. It’s you living the belief that there is something wrong with you, and how can you ever be truly happy with yourself if you believe that?

We live in a world that is, when not actively hostile, passively resistant to accepting different ways of being. But that can be changed. Autism can’t. And it doesn’t need to be. We all have our strengths and weaknesses, our talents and limitations. There is no reason that some should be ‘okay’ and some should be signs of brokenness. Why is it okay for a person to be bad at doing math, but wrong for them to be bad at understanding body language?

Don’t try to change what cannot be changed. Accept it, understand it, and from that beginning we can work towards making a world where simply being different isn’t a barrier to inclusion.

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Our Adventures with Riley (@dkotucker) To ‘I Wish I Didn’t Have Aspergers': #AutismPositivity2012

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

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To ‘I Wish I Didn’t Have Aspergers': #AutismPositivity2012

The Autism Positivity Day Project:
“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.”


From Our Adventures with Riley: A pseudo-Haiku poem for you

Life is not easy
Even for those who pretend
They may feel alone

Typical can change
There is good reason for this
No one is the same
Where it all begins
Look in the mirror to see
There is always hope
Together we can
With unconditional love

Make a difference

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The Invisible Disability to “I Wish I Didn’t Have Asperger’s”: #AutismPositivity2012

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

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The Invisible Disability to “I Wish I Didn’t Have Asperger’s”: #AutismPositivity2012

by LoCo_Mommy on April 30, 2012

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

There takes all sorts of people to make the world go round. Tall ones, short ones, polka-dotted ones.

And there’s room for everyone to show their spirit and color.

I say this every day as I look at my son. Now, he is not an Aspie. He has PDD-NOS, but as you know, there is room on the autism spectrum for all types of folk. I see how he flourishes and how he struggles. I see his joy and his frustration with the simplest of tasks. I ache when I think of him in the future – in school, in the dating world, trying to navigate a world that isn’t so simple.

But, the world is changing. Things that didn’t seem so attainable before are mere standard today. Now you can see characters in movies, TV and other media that can make you think, “hmm, I’m not the only one.”

I hope we continue to move forward in acceptance and adaptability. Not just for you but for everyone.

Because you know how to march to the beat of your own drum. Now let’s get other instruments together and rock out!

All the best,

The Invisible Disability

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Sharing through….

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 StormThe Third GlanceAspie KidFlappiness IsQuirky and LaughingLife on the SpectrumFairy Tale ForgottenThe Aspie Side of Life, and Inner Aspie.

For more information and how to share, go here.

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

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

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

You’re probably wondering why I’m writing to you. I don’t have Aspergers. My son has traits of autism, but not enough for a diagnosis. So what could I say to you, and why should you listen?

I want to tell you how moved I was when I read on several blogs I follow that someone had typed “I wish I didn’t have Aspergers” into google. Not least because the same day my son had yelled, on the verge of meltdown, “I wish I didn’t have dyspraxia and dyslexia and all THIS STUFF!” There is nothing worse than seeing someone in pain, and being powerless to fix it for them. It’s worse than being in pain yourself.

I know something about Aspergers and autism. Through friends, advocates and reading blogs I think I’ve come a long way in my understanding of it. I know more about wishing you’re not who you are.

I’ve struggled with depression for a long time. There have been many moments in my life when I wished I wasn’t me. There are all sorts of bits of myself, physically mentally and emotionally, that at various points I’ve wished away.

I know that it doesn’t matter what I look like, how other people see me, that so long as I try my best to be a good person that’s what matters. For a long time I was surrounded by people who told me I was worthless, and for a long time I believed them. Bullying saps your soul. It’s hard to believe that being unique and true to yourself is fine when people are telling you daily that this isn’t the case. I was 33 when I realised that I was fine. Until then I thought there must be something wrong with me. Once I made the decision to surround myself with people who truly cared, who love me as I am, things became easier. I could still list many things I would change, and I have days when I hate myself, but not nearly as often.

It tears me up to see how aware my son is of not being “normal”. It isn’t fair that he struggles so badly, but I can’t change it. I wish I could stop him wishing to be someone else.

If I could change him, would I?

I’d like to take away the dyslexia, so he could get what’s in his head out and let everyone see how brilliant his ideas are.

I’d like to take away the dyspraxia, so his body would do what he tells it to and he wouldn’t feel so frustrated.

I wouldn’t change how he sees the world. I can’t separate out which bits are “autistic traits” and which bits are him. It’s challenging, and it’s hard at times, that’s true. But it’s also inspiring. He’s taught me to see the whole world in a new way. And he wouldn’t be him if he didn’t think like that, view the world that way.

I don’t know who you are or how old you are. I hope you realise that when people say they hate Aspergers or autism they don’t mean they hate you. They hate that you’re struggling. They wish you had it easier. And if people do say they hate you or that you’re less than them because of who you are, I hope you have the strength to walk away, and find the people who appreciate you. You will find them.

There’s plenty in life that’s painful and unfair. I hope you can focus your efforts on the things that can be changed, and find somewhere safe and supportive to let off steam about the things that can’t be changed. It’s fine to feel frustrated, it’s fine to feel angry, so long as you’re not overtaken by it and targeting it at yourself.

Lots of people are writing to you today, many of them far more eloquently and expertly than me. I hope you’ll click the link below and read more.

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My Whac-a-mole Life To ‘I Wish I Didn’t Have Aspergers’ – An #AutismPositivity2012 Flash Blog Event

This post was originally published at http://www.whac-a-mole-life.com/2012/04/to-i-wish-i-didnt-have-aspergers.html and is reprinted here with permission from the author.

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To ‘I Wish I Didn’t Have Aspergers’ – An AutismPositivity2012 Flash Blog Event

***This post is part of a community-wide flash blog event, responding to an anonymous Google search for “I Wish I Didn’t Have Aspergers.” Read more here: Autism Positivity Day Flash Blog Event.

To: I Wish I Didn’t Have Aspergers,

I am writing this because you could be my child. I am writing this because it  is my responsibility as a parent of a child on the autism spectrum to relay this message every day – so you will grow up to be proud of your identity. The problem is, WHAT IS THE RIGHT MESSAGE?

This question rips me apart because, of course, it pains me to see my children struggle against the grain every day. Of course, I want them to take pride in themselves and be proud of their identity. It’s true that being “wired differently” actually furnishes them with some very cool and unique attributes.

However, as their mother, I understand your plea. And you know what? I WISH THEY DIDN’T HAVE THEIR DIAGNOSES, TOO!

This sentiment is extraordinarily polarizing; some might even say it stigmatizes their existence. Of course not! It’s okay to lament something that makes one struggle, which we wish were different about ourselves. Every human being does it – whether it’s as mundane as math homework, athletic ability or hair color…or as magnanimous as your distress.

Psychologists tell us that struggles in life can foster resilience, a highly valuable attribute for anyone. Resilience might even make us live longer. But, seriously, nobody really WANTS to struggle. And watching someone you love struggle is equally as (or arguably more) painful.

If you’ve indeed arrived here wishing you don’t have Aspergers, you’re not going to fall for me telling you: “You are wrong. Autism is a gift.” (So are Dyslexia, ADD, Down Syndrome and everything else, according to a multitude of books on Amazon.com.) I celebrate differences. I embrace and learn from different schools of thought. But tell me, who, when expecting a baby, thinks: “I really, really hope this baby will have autism.”

Still, just as each person has their own eye color, certain innate strengths and skills, many also have autism. And their place in this world is as important and valid as any other person’s. I agree that the challenges you face are greater than some…but also fewer than others. That’s life.

I cannot validate or invalidate your concerns or expectations. For all of us, life is full of joys and disappointment, and each of us just must do the best we can with what we’ve got. I suspect you have worked harder on developing yourself than the majority. As I think about it, autistic children easily could emerge from countless hours of therapy and special needs services with a shattered self-image and belief that they have unacceptable “deficits.” I mean, imagine if we all worked as hard on ourselves as those we send to therapy week after week! The world might be a much better place; but we’d probably all suffer from low self-esteem.

Some might fault society for these feelings of inadequacy. No doubt, there is a widespread lack of awareness and tolerance for differences. But the part of autism that’s not okay is the part that spins my daughter out of control…or results in too many children drowning in lakes. I cannot accept that. I see that many on the spectrum overcome these urges, needs and drives as they mature, but “overcoming” anything requires strength, work and persistence. Every. Single. Day. I admire that.

My dear “I Wish I Didn’t Have Aspergers,” if you are not thinking this, I am: Why should you listen to me? How could I possibly understand the complexities of your despair. I am an autism parent; not a peer.

Well, I do hope that you have your own family, mentors or friends looking out for you, doing the best they can for you – like I try to do for my children. So I can assure you that, while this help might sometimes be misguided, it usually comes from a place of love and support. Please TELL the people making you feel bad what’s going on. As a parent, I’d want to know.

Remember, Aspies think very differently. Just as you might struggle to understand others’ motivations and feelings, they often are befuddled by yours. Please allow us work together to understand each other better.

If you do not have someone in your life who can fill that role, you must make that a priority. Start here. Click on the pretty button above and read all of these posts. I am about to do the same, knowing that the journey will take me through stages of agreement, disagreement, anger, admiration and education. Yet, I appreciate each post.

There has never been more awareness and dialogue around Aspergers and Autism than now. I am lucky, as a parent of a young child with autism, that I have access to a multitude of resources, ideas and support, including (and especially) amazing teens and adults on the spectrum willing to share a glimpse into their worldview. Since my daughter cannot speak for herself, they can – as much as any individual can understand another  – help me help her. Perhaps they can do the same for you.

Please continue searching, growing and connecting with others. And let us know what you’ve learned. Because if there’s anything we all can agree on it’s this: We all have a lot to learn.

“Knowing yourself is the beginning of all wisdom.” –Aristotle

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LIfe and Ink’s Letter To “I Wish I Didn’t Have Aspergers” #AutismPositivity2012

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

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LIfe and Ink’s Letter To “I Wish I Didn’t Have Aspergers”

“I wish I didn’t have Aspergers.”

That’s a loaded sentence.

I have thought a lot about what I would say to someone who had that thought.

First, I would say I understand.

I would say you are not alone.

I would say I know some of the challenges.

I would say that there was a brief moment when I wished I could have played God and taken 30 points off my son’s high intellectual IQ. I would have added those 30 points to his extremely low social skills IQ in hopes a higher number would magically alleviate the social struggles he had.

I would be dishonest if I didn’t say I had that thought.

But it is my intent to be honest with you.

And, well, I am not God.

So I couldn’t change his IQ distribution.

Besides, when I did the math, even with a 30-point rearrangement he would have remained gifted, but still be two standard deviations below the norm socially.

So why bother.

Moreover, why spend valuable time wishing I could change my son. Yuck.

Instead we focused on accentuating his strengths, his gifts.

Everyone has gifts.

YOU have gifts.

So, the next thing I would say to you is let’s sit down and have tea and together discuss the gifts that come wrapped up in packages we call Aspergers.

*   *   *

My son Ted is 20. He was diagnosed with Aspergers when he was 4.

He is the most interesting person I know.

He fascinates me really.

He is honest. He is cutting. He is smart. He is insightful.

He laughs more than anyone I know.

He has more self-awareness than any adult I know and I often wonder if because of Aspergers, he is free from the confines those who are called neurotypical create for themselves.

He thinks for himself rather than being swayed by popular opinion, even when its been difficult to do so.

It’s awesome actually to think how he lives in a world where he is not perpetually worried about what others think.

Do they like me?

Do I look okay?

Am I smart enough?

Do I fit in?

Free. Totally free from all of that while maintaining the strength of character to exist against the grain and maintain his individual identity. That is strong stuff and I don’t believe individuality like his gets nearly the credit it deserves in our sheeple, keep up with the Joneses culture.

In addition to not being swayed by popular opinion, Ted is neither interested in, nor motivated by material things. Instead he is absorbed by ideas.

Questions of religion, history, physics and philosophy fascinate him and armed with a photographic memory, his depth of knowledge on topics is awesome. And so much of it is self-taught. For when other kids were doing other-kid-things, Ted was reading. Our extroverted culture has called him a loner, even a loser for his pursuits. He sees it differently. He pridefully calls himself smart.

It’s a matter of perspective and for Ted all he has ever asked of the world is, if not to understand his perspective, to at least respect it enough to be kind to him.

When he was little, because of his different interests, he was called a “loser”, “sick boy” and “weirdo” by his peers. The so-called normal kids. He hit those kids. In all the episodes Ted was involved in, and believe me there were a lot, when the situation was looked at closely he was not the initial perpetrator. It was just a guileless Teddy, who acted for all to see, who got caught, punished and told he had to change.

But see, Teddy didn’t have to change, not fundamentally, he just had to be refined, taught how to behave in social situations. Thank goodness for all those intellectual IQ points, because he was able to learn to adapt. He was born with all the tools, all the gifts he needed to succeed.

And he did succeed.

He adjusted. Now the world needs to do the same.

See, we didn’t have to rearrange the IQ distribution after all.

I didn’t have to play God, I just had to be mom and help him learn to use what he had been given so he can help himself.

So finally, the last thing I would say to you is think about your gifts, your talents and how you can make them shine. You are made how you are supposed to be made, you are not supposed to be changed or redistributed.

For your are beautiful.

You are beauty wrapped in Aspergers.

In every block of marble I see a statue as plain as though it stood before me, shaped and perfect in attitude and action. I have only to hew away the rough walls that imprison the lovely apparition to reveal it to the other eyes as mine see it. Michelangelo

This post is part of the #AutismPositivity2012 FlashBlog.  To read more about the Project, please go here!

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My Asperger’s Teen to “I Wish I Didn’t Have Aspergers” – #AutismPositivity2012

This post was originally published at http://www.myaspergersteen.com/my-aspergers-teen-to-i-wish-i-didnt-have-aspergers-autismpositivity2012/ and is reprinted here with permission of the author.

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My Asperger’s Teen to “I Wish I Didn’t Have Aspergers” – #AutismPositivity2012

 

The Autism Positivity Flash Blog was inspired by a search referral on another site. Someone searched the internet for “i wish i didn’t have aspergers”, which is heartbreaking yet all too familiar. Those of us who are affected by autism, whether personally or through a loved one, have banded together to send messages of hope to that anonymous searcher.

May 10 will mark 7 years since my son was diagnosed with Asperger’s Syndrome at age six. Long before that day, though, I knew something was going on with Jayden. He saw and reacted to the world differently than other kids his age. He was so far ahead in some areas of development, yet so far behind in others. At the time, I was finishing my graduate training to be a psychotherapist, so I knew what the verdict would be before the evaluations even began.

Asperger’s Syndrome. Autism spectrum. Here are some pamphlets. Here’s what to expect. 

Even though Jayden’s diagnosis was no surprise, it was still hard for me to take in. That moment was just part of any other day for the diagnostic team at Weisskopf, but it changed everything for us. As a parent, I had to completely readjust my expectations for the future. I had to accept the fact that all the things I anticipated might occur on a completely different timeframe, if at all. And as Jayden grew old enough to understand his diagnosis, he had to adjust as well.

I completely understand what it’s like to wish I didn’t have to deal with autism. Sometimes I’m frustrated and sad and worried about my son. Even angry – not with him, but with our situation. He’s going to high school in August and I’m terrified. In moments like those, sometimes I think, Wow. If only he didn’t have to deal with this. If only he didn’t have to struggle. And, in more selfish moments, I think, If only *I* didn’t have to deal with this. Maybe that makes me a bad mother, but I’d like to think it makes me human. There are always times in life when we would love to be somewhere or someone else.

There is Always Good

Despite the moments when I’m overwhelmed, I would never take away Jayden’s autism. I wish I could take away the things that are difficult for him, like dealing with bullies or organizing homework or tying his shoes, but I would never wish away the Asperger’s diagnosis because it’s so much a part of who he is. It’s easy to focus on the hard things and lose track of all the wonderful things, but I make a point to think about the good parts every single day.

He may not always express it the way he wants to, but Jayden truly cares for other people. He has never been mean or cruel, has never made fun of anyone or called them names. He is creative and polite and smart and funny. He never hesitates to say what he thinks or stand up for his beliefs and values. He doesn’t fall victim to peer pressure. He doesn’t accept anything as true, right, or fair just because another person says he should – he thinks for himself. And there is no way I would trade any of those qualities for a child whose brain works “typically” (whatever that means).

This world is made up of all kinds of people. And each of us struggles with something, whether it’s a diagnosis, issues with family, or any number of problems and troubles. Don’t let your struggles overshadow the good. Don’t let the world convince you that who you are isn’t enough. There is love and support out there to help you find your way. A label does NOT define you, just as it doesn’t define my son. My hope for you is that, one day soon, you will be able to recognize your strengths and will never have to wish that you didn’t have Asperger’s again.

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