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.
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.
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.
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
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!
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.
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.
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.
This post was originally published at http://fairytaleforgotten.blogspot.com/2012/04/to-i-wish-i-didnt-have-aspergers_30.html and is reprinted here with permission from the author.
Oh, sweetheart. I’m so glad you clicked to here. Please come here and sit by my side and tell me your story. You see I’m an Aspie, too, so I get it. I get how hard it is to communicate with others. I get how frustrating it is to never really know if people are being sincere to you or not. I get how bad you want to scream because people won’t just say what they mean and mean what they say.
I also get why it’s so heartbreaking sometimes to be a parent to a child who struggles with Asperger’s or Autism. I’m a mommy to twin boys who are both at different points on the spectrum, too. These boys and their little sister are the lights of my life.
I know you’re struggling right now. I know you’re looking for answers, maybe even a cure. I make this request of you, please don’t ever wish away a part of yourself. Your Asperger’s makes you unique. It makes you beautiful. It makes you see the world differently than everyone else on the planet. You don’t think like others so you’ll never be “just another fish in the pond”. Your thoughts are valuable. Your point of view is priceless. You are heard.
I’ll be the first to stand up and offer you my hand, or my ear, or my shoulder…whatever you need to make yourself feel supported. We’re out here. We’re parents of others in your situation. We’re people who live with Asperger’s or Autism every day of our lives. We’re siblings of brothers and sisters who are on the spectrum. We’re grandparents of individuals with Asperger’s and Autism. We’re people with success stories to share, with happy memories to make, with dreams we are one step closer to fulfilling every day…we’re people like you.
I know you’re struggling. I know your heart may feel shattered right now. Just please remember that we are here. We are a community of friends online and in real life who will walk with you, cry with you, talk with you, and rejoice with you over victories both big and small. We are open hearts and open minds. Seek us out any time you need us and we will be here.
Please know that it gets better. The world is slowly starting to realize how important it is to know people like us and to understand how to reach and be reached by us. We are gaining acceptance to the outside world but just know that here you are accepted. You are completely accepted. No caveats, no requirements, no “if only’s”. You are accepted and you are welcomed with open arms.
The search that brought you here has brought you to a safe place. It has brought you to a place where you will be heard. It has brought you to a jumping off point to a magnificent community full of people who get it. You can click on any blog link to the right and they will take you to someone else who will accept you and I am adding to this list almost all the time. You are part of a wonderful community that you never knew existed. Stay a while and get to know everyone. Once we get to know you, we will take every opportunity to remind you of just how great you are, Asperger’s and all. I promise. And I don’t break promises. I’m here for you. Just take my hand.
My brother and I would have belonged on the “autism spectrum” if such a thing had been discovered in the 1950’s. He was on the more severe end, having also problems with ADHD, etc. and social and academic difficulties. He disliked school because of teasing and name-calling, and repeating grades. He didn’t learn to read until his 2nd time in 7th grade, when purely by chance he was assigned to a wonderful teacher, Mrs. Reed – (honestly) who took the time to figure out how his way of learning was “different” from the average. Although he is still a terrible speller (has everything proofread by family members), he graduated from Vocational School, and has had a successful career in building and contracting, has been a Volunteer Firefighter and Fire Chief in his town, is a first responder in climbing and ice rescues, and is a free-lance excavator, pole setter, and lighting rigger for large concert venues. He’s been married for 24 years, and has a son who is a robotics ace. Pretty good life for one who started so slowly.
I myself would have been a “high-functioning Asperger’s child.” I loved school, learned to read at age 3 1/2, and despite bouts of extreme shyness, depression, anxiety and panic, (which have never entirely disappeared), made a so-so adjustment to social situations, got good grades, and found my niche in music and education. Aside from stage fright, which prevented any kind of solo or conducting career – (“they have an App for that now”) -I have been a life-long orchestra and band member, taught music for over 40 years (all ages & levels, and 15 years as a teacher of Music History at the University level) with a Master’s Degree in Music, and also earned a Master’s degree in Library Studies. I had a very happy marriage, and am helping to raise my 3 lovely (bonus) grandchildren. My “alter ego” is an outdoorsy person – I love camping, hiking, road trips, and am handing many of these life-skills down to my grandchildren. So, another success story. I hope these will give parents hope for their “different” children.
From Angie Norheim (@get2bfit)
I was diagnosed with aspergers 2002. I struggled throughout college in early 1990s and not sure if warning signs were arriving back then, but I did graduate with a C average. Autistic people, aspies and people with disabilities want respect, acceptance as we are and appreciation for their uniqueness. Though autism and aspergers affect each individual diffrently, I’m still learning what aspergers is… I know what I’ve experienced from it, but doesn’t mean I know what it is. anyhow, I want to be valued for achievements and my struggles because trying new endeavors is better than giving up and I won’t ever give up because I like learning something new every day. Autistic and aspies population like to have the same normal definition as the non-disabled and accept that we are normal in our own individual ways, not by other’s opinions what they think normal is.
My son is four years old and has autism. He has taught me what love really is. He has taught me patience, empathy, kindness, and selflessness. Autistic people are not judgmental, they rarely lie, and they view the world through logical eyes. Without autistic people we wouldn’t have engineers, scientists, and safety protocol experts. Autistic traits are needed for our society to function. I understand that having autism can be difficult in a world of neurotypicals, but many people are working very hard to spread autism awareness and to teach others to be more mindful of those who have autism. Very soon in the near future everyone will know what autism is and it will no longer matter what the “norm” is. There doesn’t need to be a “norm.” We all just need to be accepting of each other.
This post was originally published at http://purpleaspie.wordpress.com/2012/04/30/purple-aspie-to-i-wish-i-didnt-have-aspergers-syndrome-25/ and is reprinted here with permission from the author.
Someone, somewhere out there, is wishing that he/she did not have Asperger’s Syndrome. Whoever you are, or if there is more than one of you, I hope you read some or all of the posts with this subject line to know that you are not alone. I’m sure many of us who have Asperger’s, if not all of us, have, at one point or another, wished we didn’t have Asperger’s Syndrome.
Growing up on the autism spectrum is certainly not easy, and I find myself wondering if you are a teenager. Being a teenager is hard enough as it is without a disability whose most obvious attribute is “difficulty with social skills” to make it harder. If I’d known I had AS when I was a teen, I’d probably have wished like crazy that I didn’t have it. I didn’t want to have anything to make me different, and I was most definitely different.
Today, however, as an adult, I can appreciate my differences. I think differently, and in my opinion that’s a good thing. I can look at situations in a way that non-Aspies can’t. I can solve puzzles that have my non-Aspie friends shaking their heads. I can make friends with almost any animal I meet, even the ones that other people say “He doesn’t like anyone!”
I have hypersensitive hearing, and while sometimes that can make me crazy, at other times it is very, very useful. I can find my cats by listening to them purr. When I do my transcription job, I can hear audio that my co-workers can’t hear. All of my co-workers, even my supervisor, will ask me to listen to things that they can’t hear. When I was waiting for eye surgery to fix my vision problems, I was able to use my hearing to make sure a car wasn’t coming to run me over when I crossed the street, or to find my black cat in the dark by calling her and listening to her meow at me.
I get along amazingly well with children. Even though I have always had a bit of a problem with the concept of “play,” children still approach me and ask me to play with them. People at my church will hand me their babies and say, “Here, hold my baby while I run to the ladies’ room,” or say to their toddler grandchild, “Go sit with Purple Aspie while Grandma goes and gets a cup of tea.” Children seem especially attracted to my purple clothing. I have bonded with many purple-wearing children.
When it comes to absorbing information, we Aspies are very good at it, especially if the subject is one of our special interests. Many people ask me for advice about their cats because they know that cats are one of my special interests. It’s not just my special interests, though; if I want to know about a subject, I get to know that subject inside and out. Ask me a question about something, and if I don’t know the answer now, I will know the answer tomorrow — along with a massive amount of additional information that you didn’t ask me about. In school I was always very good at writing research papers. I can beat almost anyone at a trivia contest, unless the subject is sports. Something I hear quite often is, “How did you know that?” to which my answer will probably be, “Doesn’t everybody?”
Our attention to detail makes us very good at spotting defects and differences. If you’ve ever seen those little pictures that ask you to “spot the differences,” as an Aspie you can probably spot those differences very quickly. If something isn’t working, get an Aspie to look at it; they’ll find what’s wrong with it even if it takes them all night, because Aspies are also very, very focused and dedicated. When I’m working on something, I will work until it is finished. Sometimes I have a problem starting something, but once I’ve started, I’m bound and determined to finish it.
While we Aspies may find it difficult to make friends, we can be very good friends. We don’t expect people to read our minds and guess whether or not something is bothering us. We don’t hide the truth; indeed, we can be brutally honest. If you want an honest opinion on your outfit or your hairstyle, ask an Aspie. We seldom judge people for gender, sexual orientation, religion (or lack of same) or skin colour. I honestly don’t care if you’re male, female, gay, straight, Christian, Atheist, red, green or purple. Okay, I might like you better if you’re purple. As long as you’re nice to me, I’ll be nice to you in return.
Dear “I Wish I Didn’t Have Asperger’s,” do you know any other Aspies? There are many of us out here. If you can’t find any of us in person, look for us in cyberspace. There are many, many autism & Asperger communities online. Go on Twitter and look for the hashtag #asperger. Learn how to be an autism self-advocate at autisticselfadvocacy.org. Join the discussion boards at wrongplanet.net. Go to http://www.inlv.demon.nl/ and sign up for one or more of their Asperger e-mail lists.
Most of all, I want you to know that you are not alone. It can be hard to have Asperger’s, but it does get better. Please reach out and find some of your fellow Aspies. We want to help.
This post was originally published at http://thethirdglance.wordpress.com/2012/04/30/the-third-glance-thethirdglance-to-i-wish-i-didnt-have-aspergers-autismpositivity2012-flashblog/ and is reprinted here with permission from the author.
This post is part of the Autism Positivity Day #AutismPositiity2012 Flash Blog for April 30th, 2012. For more information about the flash blog, and the Autism Positivity Project, and a compilation of many other fantastic posts, please visit autismpositivity.wordpress.com – Thanks!
To the person who typed “I wish I didn’t have Asperger’s” into a search engine, and to all of those who have felt this way at one point or another,
When I see the words “I wish I didn’t have Asperger’s/Autism”, I would love to be able to say “I can only imagine what you’re feeling”… but the truth is, I probably know exactly how you’re feeling. (*gasp* an Autistic person with empathy?!) We live different lives, have different hobbies, interests, families, friends (or lack thereof), and issues. But I, too, have typed similar things into google. At times, I felt lost, dejected, outcast, lonely, and broken. Like no one will ever like me or appreciate me. As if I’m from another planet, and the world is just too confusing for me to follow. I’m surrounded by people who just don’t “get” me, and it can be incredibly isolating. I bet you’ve felt most of these things before, and maybe the event that triggered your googling “I wish I didn’t have Asperger’s” caused you to feel all of that and more. I’m writing this today, to tell you that you’re not alone. There’s lots of us out there, going through the same thing, all looking for come comfort and understanding.
Having Asperger’s or Autism can be hard. It can be painful. It can be downright depressing. When I was growing up, I didn’t know I was autistic. I just thought there was something wrong with me. That I wasn’t trying hard enough, and that if I just could do better and work harder, the other kids would like me and be nice to me. I thought that my parents would stop abusing me. I wished that I could be just like everybody else, and wished that things would be better. I wished that I could just be like everyone else. I internalized all those negative feelings about myself, and was very unhappy. I didn’t have the word “Asperger’s” in my vocabulary back then, but I’m sure that if I did, I would have used that sentence exactly. Well I’m still Autistic, but things are definitely better. I do have to tell you, though, that the word “Asperger’s” saved my life, because it gave me an understanding of why I didn’t fit with the others, and why I was so out of sync with the rest of the world. More than that, it gave me a way to unlock the tools I needed to function better in the world.
There’s a lot about myself I’d like to change sometimes. I think that’s true for everyone, though, neurotypical or autistic, ablebodied or not, regardless of race, gender, sexuality, or anything else.. We all have flaws and difficulties. But we also all have strengths and greatnesses, and there’s also a lot of stuff about myself that I wouldn’t change for the world. I am Autistic, and I see the world differently from most people (quite literally). I hear and see things most people don’t, and have an astute eye for details and continuity. I love to collect and synthesize facts, and I am working on a PhD in the sciences. I’m a good teacher, and want to become a professor – I’m even on the pathway to achieving that goal. When I am working with things that interest me, I am incredibly happy, focused, and skilled. Asperger’s has given me a great set of tools that I can use to make a difference in the world, learn new things, make discoveries, and live a life I enjoy.
Autism and Asperger’s is so often seen as exclusively a bad thing, with people stuck in their own worlds, unable to feel love or joy, or happiness. Unable to communicate, and unable to be “fully human”. This can’t be farther from the truth. And the worst part about it? It’s all perpetuated almost exclusively by a few people who are NOT autistic, and most of them don’t even have autistic family members! Who are they to define us? Far too often, there’s a focus on what Autistic people can’t do. So much that people erase what we CAN. But if you focus on the CAN instead of the CANNOT, you’ll find you are capable of so much more than you realize.
I want you to know that you are NOT broken, you are NOT sub-human, there is NOTHING WRONG WITH YOU, and most of all, you are an AMAZING, UNIQUE PERSON, with a distinctive skill-set that will help to make the world a better place. Because of the card you have drawn in life, your life will never be easy. But easy is overrated, and I wouldn’t trade myself for anything.
When I used to think (effectively) “I wish I didn’t have Asperger’s”, it wasn’t my wish to fundamentally change who I am – I love being Autistic. I love the way that I am able to focus on little details for hours on end. I love the way that I can tell exactly who is walking by a room without ever seeing them. I love that I can become immersed in a topic of interest so completely, that I can become an expert in a matter of days. And I love being the person I am. My wish isn’t that I didn’t have Asperger’s. It is that others would understand that when they slam doors near me, or touch my shoulder unexpectedly, it makes me incredibly miserable. I wish that others would accept that sometimes I rock back and forth or tap my fingers together, because I’m listening to them. I wish that others would acknowledge that when I am conversing with them, my brain is firing at an incredibly fast rate, significantly faster than theirs (from what I can tell), just to attempt to keep up, and that instead of cutting me off or ignoring me, they would listen when I finally have something to say. So no, my wish isn’t that I no longer be Autistic. My wish is that the rest of the world would treat us with the respect that we deserve.
I’ve been thinking (and agonizing) about what I would say in this letter. It’s not my job to change your mind – everyone is allowed their own feelings, especially about themselves. But I do hope that when you read this, you will realize that you are not alone in your struggles, that there are hundreds out there like you, all trying to make our ways in this world, and we are here for you and for each other, to support through the challenges and celebrate the triumphs. I want to leave you with a feeling of hope, with the knowledge that you are a worthwhile person. And the understanding that being Autistic doesn’t take that away from you. In fact, it makes you even more special and needed in this world.
And I also wanted to say “Thank you!” to you, for having the courage to say “I wish I didn’t have Asperger’s”. Your websearch came to just the right blog, and brought about an amazing event, where hundreds of people have blogged about being the positives of being Autistic. You have brought together an incredibly diverse group of people, both within the blogosphere and outside of it, to tell not only you, but the millions of autistic people out there that they are loved, accepted, and appreciated. You’ve brought together parents, autistic adults, and even autistic kids, to work together to create a positive message. And that is one of the most powerful things that anyone can do. So thank you, for being a catalyst for good. See? You ARE a worthwhile person, not despite your Autism/Asperger’s, but BECAUSE OF IT. :)
So here’s to all of you out there, who may be struggling to fit in to this world that wasn’t meant for those us. And to all of you out there who have found happiness. And to all of the amazing parents, friends, siblings, extended family, staff persons, teachers, and wonderful people who believe in us, and are committed to helping us reach our full potential and to making the world a better place for ALL people who live in it. Because in the end, this isn’t just about Autism. It’s about humanity. It’s about cultivating the respect for and acceptance of diversity that allows everyone the opportunity to live a good, happy, fulfilling life, for whatever that means to them. Thank you for being forces of good in this world.
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.
This post was originally published at http://mumtoj.wordpress.com/2012/04/30/to-i-wish-i-didnt-have-aspergers-linking-up-with-autismpositivity2012/ and is reprinted here with permission from the author.
I wrote a post last year about a conversation I overheard my then 5 yr old had with his Dad……………. He’d told his Dad that he just wanted to be “normal” and didn’t want to have Aspergers anymore. Since then we’ve done lots of work with him trying to explain that nobody is “normal” and everyone’s idea of normal is different but that having Asperger’s Syndrome just makes him that extra bit special.
You see before J I worked with children, I’ve worked with alot of children in different roles, even some special needs children. Every child I’ve worked with has taught me something, some have taught me more than others, however not one of those children have taught me as much as my son. Apart from love, patience, understanding and ofcourse everything there is to know about Mario he’s also taught me that superheroes can come in all shapes and sizes. Yes he’s my Hero.
I don’t have Aspergers but I do have OCD and I know just how hard some simple little things can be but I can’t even begin to imagine how hard everyday can be for him. At 6 he deals with it, he is simply amazing. He’s so incredibly smart too, I look in his eyes and I can see him trying to work things out in his mind. And when he shows emotion, it’s real. So he only really does sad, angry or happy but it’s real. He also struggles to lie, in my eyes that’s a great thing, we’re always honest with each other. J having Asperger’s Syndrome has taught me to really appreciate the little things in life.
It’s hard because he’s only 6 but we try to explain that Asperger’s Syndrome isn’t who he is but it is a part of him and although some days can be tough we wouldn’t change that part of him or any other part of him because he is who he is and we love him for the being the person that he is.
So to “I wish I didn’t have Aspergers” I’m going to remind you that somewhere out there are people who care about you because you are who you are and Aspergers is just a part of you, it’s not all of you, it’s an extra special part of you. I don’t know if that will make sense to you, I hope it does. Take care x
This post was originally published at http://nouske1971.wordpress.com/2012/05/01/to-i-wish-i-didnt-have-aspergers-autismpositivity2012/ and is reprinted here with permission from the author. (Links to a Dutch language blog, but post is in English). It also appears at http://aspienouschka.wordpress.com/2012/05/02/aspienouschka-to-i-wish-i-didnt-have-aspergers-autismpositivity2012/, an English-translated version of the author’s blog.
I Wish I Didn’t Have Aspergers
I wish….I had known I had Aspergers ages ago! It would have made acceptance so much easier. It would have put all the pieces of the puzzle in the right spot a lot earlier on in life. I am 41 now, and only just figuring out what it means to be an ‘Aspie’.
Yes, there are clear downsides to Aspergers….tons of them. But they mean nothing compared to the benefits: my hyperfocus allows me to be good at what I do for a living; my dogged determination helps me to achieve whatever I set my mind to.
As far as the negative aspects go….when you are young, you learn a number of coping mechanisms for your ‘quirks’. Make sure you cultivate them well, they will last you a lifetime.
I’ve learned to shape my life in the way it is easiest to live with AS. That means that I don’t work in an office with colleagues, but all by myself. It means that I don’t go to events where there are large groups of people. It means I use earplugs whenever I feel the noise is getting to me. My best advice to someone who’s learning to live with Aspergers is: make sure your life fits you. Don’t do the things that make you meltdown. Surround yourself with people who are willing to understand you, and help you when you need it. Retreat when you need to. And do the things you really want to do, in your own way.
I’ve been places, I’ve studied in foreign countries, I’ve got a mortgage, I have my own company. All thanks to Aspergers, because that is part of who I am. Not all of it, but an important part of it….
Dutch explanation for my usual readers: Dit is een blog dat ik speciaal schrijf in het kader van http://30daysofautism.wordpress.com/2012/04/23/to-i-wish-i-didnt-have-aspergers-an-autismpositivity2012-flash-blog-event/
Iemand op dit blog kwam erachter dat er mensen zijn die op google zoeken naar zaken als “genezing Asperger” etc. Om mensen die dergelijke dingen zoeken een hart onder de riem te steken, schrijven veel mensen uit de Asperger-wereld een blog, zodat de volgende persoon die zoekt op google naar ‘I wish I didn’t have Aspergers’ allemaal positieve dingen over Aspergers te lezen krijgt.