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Posts Tagged ‘adult’

In Their Own Words – Wounded Heart

August 13, 2010 6 comments

We received the following e-mail and poem from an individual who asked to remain anonymous: I’ve been following your posts via Facebook and truly appreciate your efforts for people associated with autism. I, myself, had/have a similar condition. I have social anxiety and selective mutism. The symptoms I had when I was young were similar to those of autism. Please let me share a poem I had written. I’m now a 30 year old, who has been struggling to lead a normal life.

It all started in 84′,
The life of a student who’s slow..

Going to school with bro and sis,
They were great caregivers of his..

Never spoke in the class,
No wonder he was a true outcast..

A student’s life for him was never there,
Playing time was also nowhere..

Loneliness was all to know,
There should have been something more..

Primary, Secondary all the same,
Sitting still as if in shame..

Wanted to make friends and get a life,
Sadly nothing much was left to rejoice..

Felt sorry for kind classmates,
The pain was really hard to take..

Didn’t respond even when asked,
One can imagine it was so tough..

Started to utter before the school’s end,
Begin to get a life only then..

Some improvements in recent years,
Even then he can’t forget the tears..

Many things still of which he is afraid,
Despite him having turned twenty eight..

Always desperate to improve and make a start,
But the wound is there in his heart.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.


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In Their Own Words – A Tale of Two Cities: Trials and Tribulations

August 5, 2010 4 comments

This “In Their Own Words” essay is written by Kate Marts, an adult who has Asperger Syndrome.

Living with Asperger Syndrome and peripheral neuropathy isn’t easy; however, I somehow naturally deal with it. When I was eight years old, I was diagnosed with acute lymphocytic leukemia (ALL). At that time, “Asperger Syndrome” was not even translated into English; as a result my diagnosis was ADHD. Post treatment, I was the social kid who was a bit awkward functioning wise who had a love for people. I was an innocent 10 year old just like every other kid; however the fact that I had ALL would back me up in life time and time again. How my life would play out the next 20 years, no one could ever fathom.

I found out what it’s like to be a fighter at a young age. I didn’t like treatment but I understood it was keeping me alive. The chemotherapy left me with lasting side effects later in life. By age 10, I was a full blown fighter. More so than when I was diagnosed. I had fought two years of treatment, and stares from other kids; I attempted to remain a member of my sports teams (softball and tennis), and changed schools from public to private. I also became impulsive and was a walking chatterbox. I was so hyper I don’t know how my teachers managed to keep me in my desk. I look back and it seems like I was born to get knocked around in the ring.

I spent most of my childhood playing in the neighborhood, chasing bugs and snakes, and hitting home runs. One could never know what I had been through. Not even the savviest doctors throughout my life could pick up on any lasting effects. I rolled through junior high and high school still not letting an ounce of what happened in my childhood faze me, despite the fact that I had very few friends who were loyal to me. After junior high, we moved to eastern Nassau County, Long Island and shortly after, more “social” symptoms started to show. I became more awkward and random, in addition to the fact I just didn’t quite get how to socialize with teenagers. To make matters more difficult, my motor skills started to deteriorate, thus I forgot how to play sports. Sports kept me out of trouble. I hung out with the mischievous kids who were your typical 90′s teens. We got into trouble but never anything significant. When the millennium came and it was time for me to graduate high school, I wasn’t even excited.

Years passed after high school. Life had completely changed. My social symptoms were getting worse and I was beginning to get sensory symptoms that would paralyze me. I had a million bad habits to ease the sensory issues and restlessness. All the while, I had no idea what was going on. I was unable to finish my classes and subsequently had to fold my endeavors in college. I returned home to Long Island after spending a few years in Providence. I spent some time working at the Huntington Townhouse before landing a job as a CSR in an insurance agency. It was my lucky break. I learned how to use the traits I had from having Asperger Syndrome to my advantage. High attention to detail was very important in the type of position I held. Sadly, I was only able to work there for a year due to my father’s retirement. New York was too expensive to live on my own; against my desires I moved to Georgia for a bit until I finally decided to return to New York a few months later.

My job, a CSR in a small insurance agency, lasted six months. The stock and housing markets crashed, both of which my industry depended on. I searched for a new job but ultimately failed. My symptoms from Asperger Syndrome were worsening, in addition to the fact that I started getting electric shocks. My whole body was attacking me and I couldn’t communicate to anyone what was wrong. I landed in a hospital for two weeks with exhaustion, and ultimately moved back to Georgia upon discharge. I lived on for another year. I finally got a “break” – one of my legs I had broken in New York the year before suddenly became paralyzed. I had a strange case with spasticity and tremors in addition to everything else. As a result I had to be patient. After two years of social symptoms accompanied with sensory symptoms and neuropathic pain, I finally had answers I had been searching for, for so long. That November I was diagnosed with Asperger Syndrome. In addition to the fact, I was diagnosed with peripheral neuropathy a year to the date my leg became paralyzed.

I’m fortunate enough that the fighter in me never left; she just became dormant in a disease that I nearly lost my life to. I even learned a few things along the way while living in New York. The first thing I learned was from “A Bronx Tale” – “The saddest thing in the world is wasted talent.” The next thing I picked up is the tenacity that New Yorkers’ have. We never give up and we give everything our all. Sounds like a famous New Yorker who just passed recently, George Steinbrenner. The third thing I learned, from a former boss,was to be realistic. The final thing I naturally picked up on – everything happens for a rhyme or reason and often things fall into place.

I realize now a combination of a few things kept me alive, my trials in New York and my tribulations in Atlanta. With that, my personality kept me going all these years. Today, I am far from the person I was two years ago. I could barely keep my head up straight and was going through daily episodes. I take a cocktail of meds that relax my muscles for my peripheral neuropathy.  With hard work I was able to reverse most of the symptoms from both conditions.

I still have more challenges than most to overcome; however, I am proud to say I am a tale of two cities.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.


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“A Regular Guy: Growing Up With Autism” – An Adult with Autism’s Take

August 5, 2010 1 comment

Two Autism Speaks employees, Ali Dyer and Kerry Magro, recently read Laura Shumaker’s book, “A Regular Guy: Growing up with Autism.” Each wrote a response to the book, unique to his/her relationship with autism. Ali has an adult brother with autism; Kerry, an adult with autism, is a rising senior at Seton Hall University, majoring in Sports Management. Below is Kerry’s response to the book.

This week I had the pleasure of reading Laura Shumaker’s book “A Regular Guy: Growing Up with Autism.” The book gives her perspective about her son Matthew’s journey from early childhood into adulthood with autism.

Before going into the book, I just wanted to say I admire what Laura has been doing to help families with children on the spectrum. I first learned about Laura’s book after she commented about one of my earlier blogs about the Autism Speaks 400 race. It was really great to see that all of this was able to come together.

The best way to describe the book would be a rollercoaster of good times and “learning” times for The Shumaker family. The one main thing that is clear, though, is the loving bond of a mother and family doing everything they can to make sure their son grows up to be okay. Whether it is early on where she is desperately looking for that special “Miracle Cure” or when Matthew gets older and it’s more about accepting him as who he is. This book gives you the whole insight to a mother’s struggle everyday with a child with autism.

Many parents look for answers and Laura’s book is sure to connect with parents with children on the spectrum as it goes through different diagnoses of ASD, school placement, family life, money complications, stress levels, babysitting options, and unforeseen struggles that come often come out of nowhere.

Being diagnosed with autism, I gained a great respect for different individuals with ASD from reading this book. As a young adult on the spectrum it makes me want to learn more about how my early childhood compares to Matthew’s.  It also made me continue to understand that no one diagnosis is the same. Every diagnosis has a different rarity from individual to individual. There are thousands of treatments, yet not one cure.

What we can take from this book in the end, however, is that no one is alone and there is always someone to be there for you – whether it is Autism Speaks’ Family Services, an autism helpline, or even a brilliant author like Laura. Growing up with autism should be an experience of understanding and learning.

(And hey, no one is really “regular” anyway, right?)

Did you read Ali’s post yesterday? If you missed it, you can check it out here.


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Introducing Autism Talk TV

July 27, 2010 9 comments

This is a guest post by Alex Plank, an autistic adult who founded the online community Wrong Planet. Alex is a graduate of George Mason University. (*Editor’s note: Autism Speaks typically uses person-first language. Alex prefers the term “autistic adult” to describe himself.)

After years of wondering why I was different from the other children, I was finally diagnosed with Asperger Syndrome at the age of nine. I tried to find other people like me on the Internet, but was disappointed at the resources available for connecting to other individuals with autism.

Consequently, I decided to create an online community for people with autism. I was living at my grandparents’ house at the time and they didn’t have internet access, so I had to ride my bike to the library just to work on developing the site. Since I started Wrong Planet, more than 37,000 people have registered as members.We get around two million page views per month.

I graduated from George Mason University with a bachelor’s degree in Film and Video Studies. My senior project was a documentary on autism. One thing I have always wanted to do is create a TV show about autism.

Autism Talk TV is a new online television show with the goal of spreading awareness and educating the public about autism. I created this television show because there really wasn’t anything like it in existence. Autism Talk TV will  provide in-depth coverage of all issues relating to autism. Jack Robison (John Elder Robison’s son) and I attend autism conferences around the country and document people’s stories in crisp high-definition video, which I then edit into seven-to-10 minute segments.

I am continually impressed by the diversity of the autism community. Autism Talk TV gives a unique look into the varied lives of individuals related to autism and provides insight for those of us already living with autism.

Autism Speaks and WrongPlanet.net have graciously agreed to sponsor Autism Talk TV and we hope this partnership will help our show to reach as many people as possible.

Here is the latest episode of Autism Talk TV, which features an interview with Wired magazine writer Steve Silberman, who wrote a very popular article called “The Geek Syndrome,” which chronicled the rise of autism in Silicon Valley. I look forward to hearing your thoughts.

Check out Wrong Planet’s YouTube channel, where Autism Talk TV is hosted.

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In Their Own Words – What Not to Wear, Autism Style

July 20, 2010 45 comments

This “In Their Own Words” essay is by Laura Shumaker. Laura is the author of “A REGULAR GUY: GROWING UP WITH AUTISM.” Join the discussion about her book on Facebook.

It was 103 degrees, the hottest July 3 on record for our community in Northern California. My son Matthew, who is 24 years old and has autism, was getting ready to go the local saloon with his younger brother Andy to sing karaoke, one of his favorite activities.

“I’m ready,” he said, and as I turned to say goodbye, Matthew stood before me in a long sleeve winter wool plaid shirt, khaki pants and dress shoes.

To top off the look, he had cut his bangs too short and tried to hide the botch job with a comb over. He had patches of toilet paper soaked in blood all over his face from shaving.

He was beaming.

“Matthew,” I said, “you really should change into something cooler. It’s really hot … ”

“I look good!” he argued.  “”I’ve been planning on wearing these clothes all week!”

He did look pretty good, at least better than his standard shorts, t-shirt, dark socks and sandals.

Andy shrugged with resignation in the back ground, but insisted that Matthew clean up the shaving cuts before they left.

I asked parents on my  Facebook page to tell me which battles they’ve given up fighting. Most, as you can imagine, had a hard time picking just one.

I have struggled for years over Matthew’s clothing choices and grooming routine. Thankfully, he’s embraced the idea of the importance of physical hygiene (though a little obsessed with a close shave) but the clothing battle is one I’d given up on. As Matthew walked out the door that night, it occurred to me that it was time to help him work on his image. He was, after all, looking to meet some nice girls. He was going to need all the help he could get. The challenge would be finding a way to get the message across without lecturing him.

An idea came to me.

I got the Halloween box out of the attic and fished out some cheap wigs that we’d collected over the years. I convinced Andy to help me put together some “regular” outfits and some oddball outfits enhanced by a Sony Bono mullet and the Morticia wig.

“We’ll make it a game!” I told Andy, “We’ll ask him to pick the outfit that looks the craziest and the one that looks the most regular. “

“You realize this is going to backfire,” said Andy, “and that he’ll want to start wearing the wigs around.”

And of course that is exactly what happened.

So I’m backing off again. You have to hand it to me for trying. The good news is that Matthew and his social skills counselor are going people watching today at the mall. (Her idea, not mine)

Maybe he’ll get some fashion tips there.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

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In Their Own Words – In the Workplace: Expect Ruffled Feathers

June 8, 2010 3 comments

We thought our dreams had come true when our 22-year old son with autism landed a job as a custodian at an Army base just outside of Washington, D.C . Full health benefits, paid vacation, and a starchy new uniform – yahoo! With his intense focus on repetitive tasks and military trivia, he had the makings for a model worker, but our euphoria didn’t last long. After a rocky start, six weeks into it a Human Resources rep called me into her office to say my son was becoming increasingly unreachable, “a pain the neck” for his supervisors to deal with. As a square peg in the round hole of a straitlaced military base, with little or no interest in office politics, he was making for an inscrutable co-worker. What to do?

Here’s the surprise: instead of tossing my kid out, they invited me in to a well-attended managers’ meeting to talk about how to manage autism in the workplace – a first for this forward-thinking service provider company. Topic A: As an employer of people with physical and intellectual disabilities, how likely were they to see an increase of  clients with autism in the coming years?

With more than 730,000 cases of children currently diagnosed with autism in the U.S., I assured them they could expect many more resumés like my son’s to be crossing their desks, and soon. Then someone suggested that perhaps the more relevant question is – if an employee who has autism is missing the piece of the puzzle that engages in typical social discourse, how can a workplace manager bring this new staffer into the fold?

Here’s how I look at it:

1. Start by becoming a noticer. When you see any of these behaviors – the lack of eye contact, the missed social cues, the wrong body language, the impulsivity, the flat affect, or the nervous tic-ing – consider that instead of just being rude or behaving inappropriately, this person may be somewhere on the autism spectrum, and inherently challenged by social expectations.

2. Use concrete language, not abstract images. Don’t talk so much when giving out instructions. People on the autism spectrum are very often visual learners and tend to tune out complicated directions – they frequently learn by watching and doing a task – so don’t be a chatterbox. Because, trust me, at this point the window has closed and he is no longer listening to you. Instead, be blunt. Say the thing you need to say simply and clearly. Then ask him to look you in the eye, (very important), and have him repeat it back to you. If he still doesn’t get it, maybe send him a text message or create a check list to read and keep for reference. Then shadow him. Stand back, watch, and let him monitor his own progress. Repeat as needed.

3. Prepare to have your feathers ruffled and then learn how to shake it off. For example, you might notice my newly employed son steps through that door ahead of you and lets it slam in your face, but this is not intentional or mean-spirited. Instead, remind yourself that being inwardly focused is a big part of what autism is. Don’t take it personally, and learn to let it go. This sounds so much easier to do … time after time … than it actually is. On the other hand, gentle reinforcers of acceptable behavior are always a good idea. Little things, like “Could you get the door for me, David? Now hold it for me until I get all the way through. That’s it!”

4. Lighten up: everyone benefits from a good sense of humor. After wrapping up David’s first week of work, he came upon his supervisor in the parking lot and said, “I’m off the clock now so you can’t boss me around.” The supervisor was initially shocked at David’s impromptu comment, but fortunately, he had a sense of humor. This kind soul didn’t exactly understand it, but he got it, and defused the situation with a good-natured belly laugh.

5. Respect the Two-Foot Rule: Give him room to breathe. Providing two feet of personal space around someone with ASD may be paramount for his peace of mind. So don’t add stress to a situation by imposing your physical self into the conversation. Many people with autism are tactilely defensive with acutely heightened senses and miserably uncomfortable when stuck in small spaces or subjected to loud noises. A handshake is fine but you do not want to goose this young man, or poke, or hug him – I know my son would react to that like he’d been snake-bit. Instead, make a standard handshake part of your daily routine with this individual, so that he knows it’s coming and doesn’t perceive it as an assault. All these things would come out if he could tell his own story, but chances are your new employee is a consistent loner, so he probably never will.

6. Pass it on: make a conscious effort to raise awareness about ASD during staff meetings. As managers of these workers, you will face many of the same problems we families do. Like us, you will have a few triumphs and plenty more setbacks. Be aware that the enigmatic part of autism is also going to create frustration in your staff’s well-meaning efforts to get through to him. Make sure all supervisors of employees who have autism understand that the disability simply is what it is—and nothing more. And yes, there will be times when you find yourself thinking this guy is a jerk or a pain in the neck, but remember to take yourself out of the equation – because (and take it from a someone who really knows) it’s not about you. Then, pat yourself on the back because – as every parent of an autistic child knows – you’ve earned it.

This “In Their Own Words” essay is written by Glen Finland. Glen is the author of Next Stop, a memoir about raising her son, who has autism, to adulthood and learning to let go, forthcoming from Amy Einhorn Books/Putnam in early 2011. Read another blog post by her – In Their Own Words: What Happens When I Am No Longer Here?

Please visit our Advancing Futures for Adults with Autism initiative at www.afaa-us.org and “like us” on Facebook, where we regularly post articles and items of interest regarding adult issues and services.

If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

In Their Own Words – Letter to My Younger Self

April 15, 2010 58 comments

I once received an e-mail from a woman, a reader of my blog, wanting to know what sort of advice I could give to her nine-year-old daughter recently diagnosed with Asperger’s Syndrome. She gave me a very thoughtful suggestion, which was to write a blog entry in the form of a letter to my younger self, which could then also serve as advice for current parents of children with autism and Asperger’s Syndrome.

I was not diagnosed until age 10, but I remember very clearly the loneliness, confusion, and frustration that came to define my life at that time. I remember how I had no one to turn to back then, no one who could tell me that everything was going to be okay. A simple truth of pre-teenhood and adolescence is that we never believe adults or anyone who tells us that everything is going to be all right. This is not due of a lack of trust or innate cynicism – after all, it takes at least a few years to build up to that – but because when we are going through all of this, it’s just impossible to think that anyone could understand.

Now, as a young woman in my 20s, I am someone who does understand. I know that I can’t save that girl, the younger me of long ago, but there are many things I would want to say to myself if I had the chance. By doing that, perhaps I can help a girl not unlike my younger self; a girl who, right now, feels she has no one to turn to and feels very alone in the world. It is for this reason – for that girl, her parents, peers, educators and clinicians who can all use a better understanding of what it’s really like inside, that I have written a Letter to My Younger Self.

Dear Amy,

I know you’re feeling pretty bad right now. The other kids make fun of you a lot, and you don’t know why. You’re trying really hard to be friends with them – doing all of the things you think they want you to do, and it’s just not working. But there is one thing you should know: It’s not your fault. Other people might say that, and you won’t be able to listen to them; but I am hoping that you will if it’s coming from me. It’s not your fault. Say it over and over in your head when you feel the worst, because that’s when you’ll need it most.

It’s not your fault. How can it not be your fault? you’ll say to yourself as the next few years go by. Everyone else can do this, can make friends, and be normal. Why can’t you? That’s just one of the many questions I know you have, questions you don’t know how or are afraid to ask. They make you feel overwhelmed, like sitting in Mrs. St. Pierre’s classroom every day, fidgeting nervously in your seat. You always get up during class to sharpen your pencil, and I know it’s because you enjoy the smell when they’re freshly-sharpened – it calms you down. So don’t feel bad if the other kids snicker or laugh when you smell your pencil. They just don’t understand.

You care a lot about what the other kids think of you. I know you hate going to Pool every week because you have to change in the locker room, and the girls make fun of your feet. This will cause you not to feel comfortable wearing flip-flops for many years, and you won’t be okay with wearing them again until you’re much older. It’ll be like that with a lot of things people say to you in school – their exact words will fade from memory, but the effects they have on you will last a long time. But don’t worry – one day you’re going to make friends with someone who really loves your feet and will call your little toe, the one that didn’t grow in right, your “Lucky Toe.”

That’s something you feel like you could use a lot of right now – luck. You keep hoping things will get better, but they never do. I have some good news, though; you won’t lose that hope. No matter what happens, you’ll still be optimistic – foolishly, maybe, but when you’re older, people will tell you how wonderful it is that you are that way.

But I have to be honest with you: things are going to get a lot worse before they get better. You’ll be in junior high school soon, and you don’t know it, but seventh and eighth grades will be two of the worst years of your life. Once again: it’s not your fault.

You like to look at things outside the window – the trees and blue sky make you feel calm. One day you will be in study hall, and you’ll go right up to the window and stick your head out of it. That’s when someone will tell you to jump. Other voices will join in, and even after the teacher finally tells everyone to be quiet and calms things down, you’ll hear them in your head for a long time to come. Every day, someone will make you feel less. Not human. Unwanted. And you’ll keep your head down and take it, because no one’s going to tell you anything different.

But I will. You’re not less, Amy. You’re more. More because you have to work twice as hard as everyone else to make your voice heard. You don’t know how to fight right now, except for when you lash out after not being able to handle the pain anymore, and then it’s you who gets into trouble, rather than your tormentors. They know how not to be seen, to avoid detection. You don’t. Even as an adult, you won’t quite fully master the art of subtlety, but right now, you’re bared to the world. Completely vulnerable. And your classmates are taking full advantage of that fact. They know how to hurt you in the worst ways, so they can get their jollies from your reactions. You can’t understand what they’re doing, and you just play straight into their hands, every time. Once more: It’s not your fault.

These days, your classmates call you names – ugly, freak, psycho, loser. Retard. They call you these things because they don’t know you, don’t care to and/or don’t want to. You’re trying so hard to force yourself into their world, with little to no success. But you will have friends one day, Amy. Better still, you won’t have to fight for their friendship – they will come to you. I know how unbelievable that seems, especially since you feel like no one wants to be around you at all, not even your parents. But you are loved, even if you don’t realize it. You just have to learn how to love yourself.

There are some things that you are good at, Amy. Like writing. You just started writing some poems, and were happy when you saw them published in the local paper (your mom and dad sent them in for you, just in case you were wondering how that happened). I have three words of advice for you: Keep doing it. Right now, you write because it’s an escape from the world around you, and you don’t care about being “good” at it. You’ll get a bit of a competitive streak in eighth grade – when you’ll come in second place in the Charles Dickens poetry contest, and will be angry at yourself for not winning – but writing will become an important part of your life after that. In fact, one day you won’t just be writing for yourself – you’ll be writing to help other people. And your writing will help people, even when you don’t realize it. So you’ve got to keep at it.

It’s hard to think that you’re good at anything when people are constantly telling you that everything you do and are is wrong. In middle and high school, your fellow classmates will tell you to your face to kill yourself, and that no one wants you around, or would care if you were gone. Don’t listen to them. I know it’s difficult, and their words will go right into you, but they aren’t worth it. You are a good person, a person worth having around, and you’d make so many people sad if you were gone.

The world is going to need you when you grow up, Amy, so you have to get there. You have to make it through these dark days, because you’re going to make a difference in the future. Someday, people will want to hear what you have to say, and you won’t believe it, at first. But it will be meaningful, and wonderful. You’re going to have to take a lot of crap and go through a lot of pain to get there, but I promise you, it will be worth it.

My time with you is now growing short, young Amy. I hope that some of the things I’ve said have brought you comfort, or at least given you assurance that there is, indeed, light at the end of this tunnel. In short: things will get better. A lot of people will say that to you, and you’ll think that they’re crazy or just trying to make you feel better, but it’s really, honestly, true. You’re an incredibly special, talented girl, and right now you’re toiling in obscurity (as so many great artists do), but someday the world is going to see how amazing you are, and all you’ll think is, “Where were you people when I was younger?”

The future seems far away, almost impossible to think about, but don’t be afraid to think about it. You’re not even sure if you’re going to have one, but you will. You will. And I will say to you now three words that you don’t hear very often (even when your mother says them to you). Three words that you’ll be desperate to hear when you get older, especially from an aesthetically gifted member of the opposite sex, but that seem very off in the distance right now: I love you. I love you, my younger, high-strung, spastic, uniquely wonderful self. And I’ll be here waiting for you. See you in fifteen years!

Love and Many, Many Hugs,

Your 26-year-old Self

This “In Their Own Words” essay is written by Amy Gravino of Montclair, N.J. Amy is a certified college coach for individuals with Asperger’s Syndrome, and is also diagnosed as having ASD. She is a member of the Self-Advocate Advisory Board for the Daniel Jordan Fiddle Foundation. Amy is currently working to complete her Masters degree in Applied Behavior Analysis at Caldwell College, where she is doing her thesis study on teaching adults with Asperger’s Syndrome to ask someone out on a date. Amy has been speaking at autism conferences across the country since age 14, as well as at professional development workshops, support group meetings, and school assemblies. She is presently authoring, “The Naughty Autie,” a dating and sexuality book for young adults and adults on the autism spectrum.  Articles Amy has written have appeared in numerous publications, including Autism Spectrum Quarterly, the Autism Asperger Publishing Company newsletter, the Daniel Jordan Fiddle Foundation annual newsletter, and more. She was also an interview subject in the documentaries “Normal People Scare Me” and “ARTS,” and will be featured in the upcoming documentary, “Desire.” Amy is currently offering private services as an Asperger’s Syndrome college coach and hopes to work on a college or university campus helping students with AS to thrive and succeed both academically and socially in a higher education setting. In addition to her advocacy work, writing, and public speaking, Amy is an avid cooking enthusiast and self-proclaimed gourmand.

If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

In Their Own Words: What Happens When I Am No Longer Here?

April 8, 2010 55 comments

My autistic son David, now 22, has finally mastered the Metro transit system here in the nation’s capital. He is also a runner who jogs alone on the Potomac River’s neat footpaths, cutting like a ribbon through tourists flocking to the Mall for the Cherry Blossom Festival. Recently, David got his driver’s license, but to ensure that he never takes more than one person for a ride, we pulled out the back seat of his little Jeep Wrangler and so far, I have been his only passenger. And there’s the rub: mastering the skills for doing things by himself has catapulted him into an ever-deepening world of aloneness. Now, everywhere he goes, roaming farther and farther into the world, he goes solo. Hardwired to protect him, this is proving more difficult for me than for him.

For years we fought side by side, battling for the right school, therapy, job coach, and lately, housing. Now, as he moves toward greater independence as an adult, the number one concern my husband and I have for our son is his growing isolation.

The supreme dread for us, and for every middle-aged parent of a special needs adult, the singular ache that dries the mouth and races the heart at 3 a.m., is loneliness: Who will offer my child a healthy, loving touch when I am no longer there? Who will care if he has not made it home by the end of the day? And if there is no one, will there be a safe shelter for him somewhere? 

The fact is, middle age is scary. Bruce and I are thirty-five years older than our son, and we have no way of knowing how things will play out for him long after our bones have dried. Nonetheless, it is time to delve into the basic civil and legal rights of and for our special needs adult son. And knowing what we know, we have made some plans.           

I anguish still over our decision to assume the limited legal guardianship of David’s life. This controls four basic constitutional rights: his right to vote, to marry, to choose his religion, and, God help us, his right to own a gun. For each of these civil liberties he must have our written consent. On the one hand, it pains me to think our guardianship could further stigmatize him. On the other hand, guardianship is an important instrument that will help protect him from a predator’s grasp. The question of whom to appoint as his financial trustees in the event of our mutual deaths is even more worrisome. The stakes are high here and the people we are asking to step in for us must be reliable, empathetic, and, to my mind, heroic.

No one looks forward to time spent thinking about his or her own death. But as overwhelming as the process is, in the final analysis, there is relief, not dread, in wising up and finding new ways to think about securing David’s future. Bruce and I have visited the good attorney’s office on three separate occasions now, sifting through the process’s tedious language, having heart-to-hearts with friends or family members who might be willing to assume a part of this enormous burden in our stead. Three or four times we have set a date to meet each other at our kitchen table to wade into the binder protecting David’s future. Three or four times we’ve let something get in the way before we can finish the task.  But slowly, we’re getting there.

And yet, we’ve come to believe the flip side of David’s autism is its saving grace. Perhaps the disquieting things that keep us up nights do not register in David’s mind. The worry-free bubble in which he lives is almost enviable, a protective shield from anxiety. We know our son doesn’t lose sleep over what would happen if his SSI payments were slashed, if his Medicaid benefits dried up, or even how he’d get home if he lost his Metro card again. For us these are very real qualms, yet somehow manageable because they do not begin to approach the darkest monster coiled under the bed: who will love him when we are gone?

On the other hand, we know the immense pleasure of what David does have – those strong runner’s legs of his and a good support system in his two older brothers – and we recognize how much harder so many other special needs children have it. When David comes in from a night run and wolfs down a box of cereal before heading off alone to his room, I feel wonder and awe for what he can do.

But like our cat, he allows me into his presence only on his terms. Neither selfish nor mean, he’s simply not needy. For example, he’s never said that he loves me, but the gift of his love is not mandatory for our allegiance because I yield to a certain unknowability in this young man. I accept that his emotional life will continue to be a mystery because he will always live on this one-way street. 

And yet, deep in my heart, there is still an ache for what could have been for him and will never be.

This “In Their Own Words” essay is written by Glen Finland. Glen is the author of Next Stop, a memoir about raising her son, who has autism, to adulthood and learning to let go, forthcoming from Amy Einhorn Books/Putnam in early 2011.  

If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

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