Monthly Archives: April 2012

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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Mom-ology to ‘I Wish I Didn’t Have Aspergers’: #AutismPositivity2012

This post was originally published at http://mom-ology.ca/wordpress/mom-ology-to-i-wish-i-didnt-have-aspergers-autismpositivity2012/ and is reprinted here with permission of the author.

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Mom-ology to ‘I Wish I Didn’t Have Aspergers’: #AutismPositivity2012

by Jen

On August 28, 1963, Martin Luther King, Jr. delivered his speech, ‘I Have A Dream’ calling for racial equality and the end to discrimination.

This well known speech was referred to at an autism conference that I was at, calling for equality for all and still an end to discrimination.  It affected me greatly as I sat thinking about those words that Martin Luther King, Jr. spoke approximately 50 years ago.

As I look at this speech, I too have a dream.  I have a dream that one day we can all live in a place where individuals won’t be judged based on labels, but based on their character.  One day I hope to live in a place where society sees the ‘abilities’ in disabilities.  One day I hope that society is accepting enough so people don’t feel the need to explore phrases like ‘I wish I didn’t have Aspergers’ on the internet.

To ‘I Wish I Didn’t Have Aspergers’… There are so many amazing qualities in individuals diagnosed with Asperger’s Syndrome (AS).  Tony Attwood, based on his clinical experiences, says those with AS have a ‘different, not defective, way of thinking’.

Individuals with AS are known to be creative, intelligent, detail oriented and honest.  They are also known as loyal friends with a good sense of humour.  I don’t know about you, but these are amazing qualities!  I wish there were more people in society with these traits.

There is a long list of well-known individuals that are diagnosed, or are believed to have/had Asperger’s Syndrome.  Some of these are:

  • Woody Allen
  • Ludwig van Beethoven
  • Alexander Graham Bell
  • John Denver
  • Bob Dylan
  • Thomas Edison
  • Henry Ford,
  • Jim Henson
  • Alfred Hitchcock
  • Thomas Jefferson
  • Wolfgang Amadeus Mozart
  • Charles Schultz
  • Steven Spielberg
  • Andy Warhol
  • Satoshi Tajiri (Pokemon Creator)
  • Albert Einstein
  • Bill Gates
  • Keanu Reeves
  • Dan Akroyd
  • Robin Williams
  • Tom Hanks

I expect that you will know most if not all of those on that list.  Both in history and present day, this is an impressive list of very successful individuals.  They have contributed a great deal to society as a whole and to be honest, I expect there will be a lot more to come in the future.

I would never look at Asperger’s Syndrome as being something that was going to limit someone’s possibilities in life.  Though there are a number of societal challenges, in time, with individual advocates and self-advocacy skills, this will change.  We have come a long way and though there is still a long road ahead of us, things will improve.

Be proud of who you are!  As an individual with Asperger’s Syndrome, you have a lot to offer society.  Those that don’t acknowledge that are the ones that are going to lose out in life.  Ignorance is a terrible thing, but rather than letting it affect you, use the opportunity to educate those around you… and make a difference!

Having Asperger’s isn’t the tragedy… Ignorance is the tragedy!

Until next time…

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Inner Aspie to “I Wish I Didn’t Have Aspergers” – An #AutismPositivity2012 Flash Blog Event

This post was originally published at http://inneraspie.blogspot.com/2012/04/inner-aspie-to-i-wish-i-didnt-have.html and is reprinted here with permission of the Author.

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Inner Aspie to “I Wish I Didn’t Have Aspergers” – An AutismPositivity2012 Flash Blog Event

Dear ‘I Wish I Didn’t Have Asperger’s’

When I think of that statement I think about the times when I, myself, thought it.  My mind skips back years in time where my own journey wasn’t always easy.  Those times, are hard to think of now.  I still have those times now where I think, just for a moment, that I wish I didn’t have Asperger’s. This letter may well be for me to reflect on during those moments as much as for others out in cyberpsace looking for some consolation.  This letter may be for my son, when he gets a little older and thinks ‘I wish I didn’t have autism’ during his moments of inevitable struggle.

What would I like to say to the child that I once was and to other autistic children out there right now?  I’d like to remind them that the things that seem to huge now won’t be in a few years.  I wish I’d known that when I was alone at recess, or picked last at PE everyday.  I’d tell them that it’s okay to be an individual and pursue your own interests, instead of worrying if the other kids will approve.  I’d tell them, you will find a friend, a good one.  Just be patient. Do not accept ‘friends’ that treat you less than in order to have a friend. I’d say, you are good enough, just as you are. Repeat that to yourself until you know it to be true.  This will be the one thing, if any that I would make sure that I as a child would have known.  I am good enough just as I am.  People that are worthwhile will respect me as a person, autism and all.

What would I say to that awkward adolescent that I once was, and to the other autistic adolescents out there?  I’d tell them to just hold on.  I know it’s hard right now. Being a teenager is hard for everyone, but even harder for us on the spectrum. I’d tell them that they’ll get a chance to date and find love.  I know it can be lonely.  I know everyone else is telling you to be patient and the right one will come along.  I know you’re tired of that cliche.  I know these words won’t stop you from feeling lonely, but please let them soothe you some into knowing that it will happen.  It may not be tomorrow. It may not be next week, but please know that you will not be lonely forever.  If I had a way to tell my former teenaged self something, I’d have told myself to keep busy doing what I like, being confident with myself and the dates and friends would come naturally.  Fretting, obsessing and constantly trying to problem solve will make relationships harder to come by and quite possibly prevent them from happening in the first place.  Getting a boyfriend or friends is not like a math problem or crossword puzzle.  It can’t be solved by intellectual thought.  It has to go through the natural stages to evolve.   I’d tell myself that I need to learn about meditation and find a good therapist to help me learn about emotions. I’d tell autistic teens that what others think don’t matter as much as what you think of yourself.  Pay attention to keeping things in order on the inside and things on the outside will be much smoother.  Learn how to detect and handle your emotions.  This is not something that is firsthand for us.  It needs to be learned and is crucial to success.

I’d tell teens to take advantage of the internet.  The amount of support available is endless. Find other ASD teen to chat with.  Find ASD adults to mentor you.  We are here.  We’ve been where you are and understand.  We can help guide you and are more than happy to do so.  Don’t post on Facebook or constantly tell your peers that you’re lonely ect… This will have the opposite effect you are hoping for.  Find some online support group to confide in.

For young autistic adults, I’d tell them most of all, that it’s okay to ask for help.  It’s okay to not know things.  There is no shame in needing assistance.  Don’t try to do everything on your own to prove that you can and to prove you’re independent!  It takes a strong person to ask for help when they need it.  Don’t drive yourself into the ground with anxiety and depression by trying to do it on your own.  Find support from somewhere.  Sometimes, with some of us, it won’t be family.  We’ll have to find it somewhere else.  Take advantage of disability services when and if you need them.

What I would want any autistic person to know, is that being autistic is okay. Don’t waste a minute of your life hiding away who you are trying to be someone you’re not.  Do what you love, and love what you do. This will help instill pride.  Immerse yourself into positive actions and let that direct you to self worth.  Don’t ever let the bullies in your life win by repeating their stories in your head through the years.  If you can’t shut the stories off, get to therapy to help you.  Know, I mean really know that you have worth just as you are.  Be authentic.  Be compassionate with yourself.  You are going to have bad days.  You are going to have sensory issues and meltdowns.  Again, learn your body and emotions. It will give you a better opportunity to handle these things when they come up.  Be compassionate and forgiving with yourself when these things happen. Remember:  I am good enough just as I am.  People that are worthwhile will respect me as a person, an autism and all .” That is your new mantra.  The world can be noisy and overwhelming. Sometimes, you might feel like it’s all too much, or your heart literally aches with loneliness.  Please, remember that there’s many of us that share your story or care very much.  We have autism, too, or children that are autistic, or friends, and family.  You’re not alone. Reach out to us.  We’re here.

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Wishing and hoping (an #autismpositivity2012 post) from Living My Social Work

This post was originally published at http://livingmysocialwork.wordpress.com/2012/04/30/wishing-and-hoping-an-autismpositivity2012-post/ and is reprinted here with permission of the author.

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Wishing and hoping (an #autismpositivity2012 post)

It appears that my recent diagnosis of Asperger’s was ideally timed. Today, an autism positivity flashblog is taking place, and I’ve had all week to figure out how to come at this in my own way.

If there’s one thing I know a lot about it’s autism (I know a whole lot about one or two other things as well, but we’ll focus on just one thing at a time today). Sure, I agree with the expression, “when you’ve met one person with autism, you’ve met one person with autism.” Because it’s just as true as saying, “When you’ve met one person, you’ve met one person.” We’re all spectacular, unique snowflakes, and autism is just a part of what makes some of us shiny.

Are my kids and I impaired by autism? Yes. Of course we are. The way our brains are wired makes it difficult to understand the world sometimes. Two of the three of us are extremely clumsy. All three of us feel emotionally overwhelmed a lot. The sensory stuff is enough to make us want to climb into a sensory-balanced cave and never come out.

Fuck it, though. No, really. Fuck it.

This is who and how we are, and it’s okay. Do I wish the world were an easier place for us? Yeah, sure. But that is not the same thing as wishing away the autism. Without it, we wouldn’t be the same people, and I LOVE the people we are. “I wish I didn’t have Asperger’s” is, to me, the same as saying, “I wish I weren’t queer.” Both labels and what comes with them are part of how we form identity. Wishing away the parts of me, the parts of my kids that are different only reinforces the idea that different is bad. It isn’t. Yay, neurodiversity! Long live the myriad of wiring options for our brains!

These are the things I wish for: I wish I had more grace. I wish I could be more organized. I wish the world felt less overwhelming. I wish it didn’t feel like the world was ending when I experience communication difficulties with my partner. I wish my children never felt stupid or incapable of success. I wish we could all stay on top of life’s expectations for us. I wish people would stop wishing us away.

Don’t get me wrong. I recognize my privilege. I have kids who talk to me, who toilet independently, who have much more potential to join the capitalist system that accords more worth to the conventionally employable. I am also far from Miss Mary Sunshine all the time, as I curse my son losing his one pair of shoes, in the house, again, or as I cry myself stupid after my daughter has had another explosive meltdown. Not every single moment of living in the house that Asperger’s built is going to be stellar for me, for them.

It’s neither curse nor blessing, though, this world of ours. We’re not special for our disability, nor am I a poster girl for being successful in the face of such adversity. It is what it is, and we are who we are. Autistic, all of us, and more or less okay with that.

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danielleQ to ‘I Wish I Didn’t Have Aspergers: #AutismPositivity2012

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

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danielleQ to ‘I Wish I Didn’t Have Aspergers: #AutismPositivity2012

I stumbled upon this blog project that’s happening today called “Autism Positivity Day”. It came about, as the website says “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.”

As a result, “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.”

Well, hi. I am a blogger. And I am part of the autism community I suppose, though I don’t know if I think of it like that. I am just me, we are just we. Let’s start with an introduction.

My name is Danielle. My blog is about all sorts of things, creative things mostly, photography and scrapbooking, food sometimes, family sometimes. Of my three kids, my daughter Sienna, the eldest child at 8 1/2 years old, has Aspergers. Ash, my 6 year old son, has high-functioning autism (the main difference in diagnosis is that Ash has had receptive and expressive language issues from an early age as well as the pragmatics and other elements). My husband, who is 35, also has Aspergers, diagnosed after the kids as a result of reading about Aspergers and recognising himself in the descriptions. Our 2 year old, Cedar, has a developmental paediatrician keeping an eye on him. We are an interesting family, for sure, we have a lot of love, and we have a lot of things to be grateful for.

I don’t know who you are, and I don’t know why you wish you didn’t have Aspergers. It’s such a sad thought, and though it may seem to be so logical to you, please don’t wish yourself away. While not the sum of your parts, Aspergers is a part of who you are and comes with a beautiful flip side to the challenges you are feeling. I don’t personally have Aspergers, I can not claim to share your experience, but I can tell you what I know to be true.

My daughter is so adorable. She is quirky, passionate, creative and fascinating. She looks at things in such interesting ways and is intrigued by details that others don’t even notice, or possibilities that never occur to the people around her. I sometimes watch her and see, behind those beautiful eyes is a brain working overtime, seeing so much, absorbing so many nuances of light and sound and colour. She is a work of art. Every day she experiences fear and anxiety, and every day she feels love, excitement and joy. There is at least a moment of everything, and I admire her every day for the way she just keeps on being her amazing self, she is just so much of herself regardless of the perspectives of others or the words of those who don’t understand. I feel her pain and sorrow, I experience her warmth and I embrace her enthusiasm. She loves me so much, and I am blessed to know her deeply every single day. She is an incredible girl and she has Aspergers.

When I was a super-emotional and sporadically depressed teenager, I often thought about the depth and intensity with which I experienced things. The black is so black, emotional pain echoes with physical force. When it hurts, instinct tells us to wish the pain away. But knowing that the flip side of that deep experience of life is infinitely valuable, and a kind of balancing force to the difficult side – to see beauty in unique ways, to experience positive emotions with equal intensity, has always been worth it. I would not sacrifice that which makes me who I am, with all the beauty and pain, to be less of myself, for the sake of less intensity of being, because I wouldn’t know how to be that person. I don’t know how to want that. No one who loves you would want that of you either.

Sometimes it feels natural to wish it away, the core of who you are, to want it to go, and that is the pain speaking, I know. But you have the power to remember, to recall and re-focus. Remind yourself. You are amazing. You have gifts and spirit and a unique view that is irreplaceable. Aspergers gives you strengths and individuality which are awesome possessions. You possess them. Your strengths and interests, they are yours. And they are part of how fabulous you are. Even when you don’t feel it to be true, reach out to those who love you and be reminded.

Ash, my middle child, is so fantastic. Along with his bewilderment at much of what goes on in the world comes infectious enthusiasm and eagerness to embrace the people he comes across, in all their variety. He shares his love of pirates with all he meets, and was saying to me just today “I don’t know why I like pirates but I just love them so much” while we discussed the relative merits of treasure maps, ships and swords. He has a smile to light up the day, and experiences the ups and downs of his emotions with dramatic intensity. So many days are the “best day ever” for some small detail he has such appreciation for, even if it disappears minutes later. He embraces things that other people would barely notice, or just shrug off. Where other boys are embarrassed to display themselves so honestly, Ash is abundant in personality and quirky uniqueness, jumping out of his skin to just be himself, regardless of what anyone else might think. To worry about that just never occurs to him. The negatives of his autism are vastly outweighed by the power of what a fantastic person he is. He works so hard, and feels so much, everyday. I am blessed to receive his adoration and beautiful warmth in each day that I know him. He is amazing. And he has autism.

While a positive message, this is not a rose-coloured glasses post. Life is full-on for these kids. They spend their days trying to decode the world around them, and sometimes this doesn’t work so well. Things get broken, others don’t understand, they don’t understand and their hearts are damaged piece by tiny piece when people say hurtful things. They take people at face value, they take words spoken very literally, and are not always rewarded for their open trust. They worry, they fear, they cry. But they always win. They remain passionately, intensely themselves and they remain incredibly loved and supported by their dad and I. We wouldn’t want anybody to change who they are inside. Because they are brilliant human beings.

I don’t exactly remember meeting my husband, as we were on the fringes of one another’s radar growing up. I remember getting to know him on the Wednesday bus home from school, when he would also be on the bus on his day off from work. He would be returning home from Adelaide, where he would have bought at least one new drum and bass cd. He spoke passionately about his music, and shared his love of beats with me. He would comment on the Shakespeare plays I’d be reading for my English studies. We would talk a little and then a little bit more, and then we wouldn’t stop talking. At other times, too, and so it grew. I always found him interesting, and loved that he was different from other people, just as I felt I was, though in different ways. Now we’ve been married for 13 years.

Ben is incredibly intelligent, and technology is his area of expertise and passion. Just as he counted the beats per minute of every song while making mixtapes when we were young, he pays attention to each technological detail around us. We laugh at some of his quirks, his ‘Sheldon chair’ and microwave rotation calculation, just as we laugh at the paint in my hair and, well, pretty much whatever. He has travelled, learned new things, adapted to new jobs and gotten to know new people again and again. In parenting, he observes and embraces and considers how best to support these amazing people we are caring for. And he loves me so much, so much that even after all these years I feel self-conscious about inspiring his devotion. But I don’t doubt it.

Aspergers? Yes, it’s there. It’s here. It’s part of our home. Regardless of autism, or because of it, I don’t know. But I do know three things: I am never bored. We have love. And I am grateful.

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A Quiet Week in the House to “I Wish I didn’t have Asperger’s” #AutismPositivity2012 Flash Blog

This post was originally published at http://aquietweek.com/2012/04/30/a-quiet-week-in-the-house-to-i-wish-i-didnt-have-aspergers-autismpositivity2012-flash-blog/ and is reprinted here with permission from the author.

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A Quiet Week in the House to “I Wish I didn’t have Asperger’s” #AutismPositivity2012 Flash Blog

AutismPositivity2012 Flash Blog Event

Dear “I Wish I Didn’t Have Asperger’s”:

Your internet search tells me you feel isolated and burdened by your Aspereger’s diagnosis.

Today, the Asperger’s community of fellow adults and supportive family members responds to you.

We assemble to give you courage.

Your intensity, sensitivity and logical thinking are gifts.  The sprinkling of autism in humanity lights the way for our neurotypical siblings. Art, science, music, philosophy and literature owe a debt to the autist.

Events that slip through the minds of our neurotypical peers linger with us. These tremors of emotional disturbance push Aspergerians to relentlessly question and seek answers.

Suffering, injustice and misfortune prod us to change the world.

So, today we write for you. The internet is an ocean of Aspies with outstretched arm to buoy you. The waves whisper deeply familiar stories. Every line you read will be a tether, pulling you to a dock with a view.

From where I stand, overlooking the blogs, chats and groups, I see hope and companionship. I see a place for every Aspergerian to tell their story and find the comfort and support they need.

Google again, we’re waiting for you.

Best Wishes,

Lori D.

A Quiet Week in the House

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

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

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

Howdy.

I’m Kit, and I’m autistic. Diagnosis isn’t important – how can a mental health professional know you better than you know yourself? – but because the university psychology department needed more autistic folks to run experiments on, they threw me at a student who was training to be able to officially diagnose people.

She told me what I already knew.

Now, this is a piece for the AutismPositivity flash blog, and I admit I’m not that positive. But I wanted to try to write something, partly because I know there’s gonna be folks posting these who have no idea what you’re going through. They’re going to be saying they never wished they were neurotypical, and maybe that’s even true. None of us know what you’re going through, because none of us really know who you are.

So, what do we know?

We know you have Aspergers. There is no clear consensus on the mental difference between Aspergers and Autism. It really depends on what people expect from you and whether you’re having a good day. Aspergers is supposedly “higher functioning”, but the concept of functioning levels is bunk. At the moment, I’m pretty high functioning – I’ve showered, made my own breakfast, and I’m now writing what I hope is a coherent blog post. (The fact I got up after noon is irrelevant, I hope.) But yesterday I was lain on the sofa, forcing myself into the cushions, scratching them to distract myself from the feelings of terror rattling inside my head. I couldn’t move, I couldn’t speak – I couldn’t get myself onto puzzle pirates (my current favourite computer-based distraction) to calm me down.

You can’t call that high functioning.

We also know that you ain’t having it so great right now. We’ve no idea what the problem is, so we can’t give any specific hints to help, though people keep telling me I could do with earplugs. I can’t promise that things will get better – I couldn’t promise that to the queers, either – but I can tell you, we are in the same boat. Some of us, below the water line.

What words can I say that I hope you want to hear?

We’re all here for you. You’ve been online, and I hope you get the chance to regularly. Get yourself onto twitter, tumblr or a blog site. No matter how little you can phrase, how few of your experiences you dare speak aloud, pass them on. Use a pseudonym if you’re worried that your mum will find your rant about the difference between what she expects from you and what you can do. Post whatever you like. Everything you post will be about autism, because autism pervades your life. Reach out to us.

And we, the autistic people of the internet, will reach back. We will listen, read and watch, as the world becomes too much for you, once again. We will comfort, distract and share our knowledge. We have to support one another, as so often no-one else will.

We too have bad days, difficult families, unusual interests. We fall apart, argue, get trapped. And I personally wouldn’t be able to go on if it weren’t for the people I’ve found online. Sometimes I’m finding it so hard I can’t go on at all, but I tell them, and they say “We want to keep listening to you”.

No matter how hard it is, you’re not alone. Talk to us. We’re here.

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