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Posts Tagged ‘Asperger Syndrome’

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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Affluence and Autism: Cause and Effect? Or Not?

August 4, 2010 9 comments

Have you seen this new University of Wisconsin study that correlates an increased prevalence of autism with greater household affluence? This isn’t the first study to reach that conclusion. But what does it mean? Many researchers dismiss research like this by saying wealthier people have more resources to get an autism diagnosis. They say more educated people are more likely to pick up subtle differences in their kids. And perhaps they’re right. Does that account for all the difference?

John Elder Robison, an author who has autism and serves on Autism Speaks’ Scientific and Treatment Advisory Boards, recently posed this question and offered his thoughts on Psychology Today.

Read more and comment on John’s post here.

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In Their Own Words – A Little Secret

June 24, 2010 15 comments

Ethan, I still love you …

Today was a pretty rough day for you, Ethan. It was for me, too.

It was hard for me to pick you up and carry you to the van with the other kids. I know it’s not what you wanted, but I didn’t want you to hurt yourself or someone else during the behavior you started to have.

I know there are times you don’t understand why things happen as they do. You don’t understand yet, because you’re only six! I hope that one day you’ll realize that the choices I have to make are to help you as you grow up.

When I see you scrunch your nose and raise your small fist, I can see you want to communicate with me, but simply aren’t sure how to do it. I try hard to keep you calm and ask what’s upsetting you, but sometimes that doesn’t work either. I hope you know I’m trying my best to be the mom you need. I’m pretty sure you see it, too. Your hugs and kisses tell me so. When I mess up, you even tell me it’s okay, and I can try again! I love when you tell me its okay to mess up, because I’m not perfect either. Sometimes I get frustrated, too, and say or do things I shouldn’t. That’s why I always come back and tell you I’m sorry when I mess up. I know you’re a very forgiving boy and that you’ll still love me too. When you tell me it’s okay, it makes my heart smile, because I see what a great and wonderful boy you’re growing up to be!

In the van, you screamed so many terrible things that you think about yourself. It made me sad to hear it. I wanted to cry when I heard you screaming such horrible things about yourself. It really hurt to hear how upset you were in school, and that you scratched your face so much. I wish I could have been there to talk with you, and make everything okay again.

I guess this is a part of life where you have to try finding new ways to handle a situation you don’t like. I don’t like hearing that you were hurting yourself again. I think you’re so special, Ethan!

You’re so smart, loving, caring, and everyone tells me how much they love you, too. You’re such an amazing little boy, even if you don’t see it yet. I see it, and I believe in you!

You said you hate yourself, even called yourself stupid and dumb. Ethan, I wish you could see yourself through my eyes. I love you during the good times, and even more during not so good times. I love you even when you call me names, and I still love you when you’re hitting me. I love you when you’re punching and kicking me, and I still love you when you try to bite me. I even love you when you scream that you hate me and then spit all over my face. I love you because God gave you to me. He knew that you were perfect for me before you were ever born. You have taught me to be patient, to listen closely, stay calm, and pray for direction when I can’t do it on my own. You taught me that I am a strong woman who can love more and more each day. You also taught me how to laugh and laugh, even on days I feel sad or grumpy. Your little laugh is contagious, and your eyes glimmer like the sunshine on a calm lake. You taught me not to take things for granted, like a hug, or kiss on the cheek, or our good night routine full of giggles. I want to thank you for teaching me so much Ethan. Without you in my life, I wouldn’t be the mom that Cheyanne, you and Isaac need. You don’t know it yet, but you’re teaching me more than I’m teaching you!

I think you’re one of the most amazing little boys a mother could ever have! I know there are times when you get frustrated and upset. I would too, if I had to deal with the same challenges you face every day. Life is hard enough without all the extra obstacles put in your way. It’s hard for grown ups, and we don’t have as many challenges as you do. You have been doing so great handling all the changes in your life. I know they’re not easy to deal with either. This is another reason you’re such an amazing young boy!

I want you to know a little secret, Ethan – there is nothing in this world that you can do or say to me, that will ever make me love you less. Nothing!

When you’re upset or feel less than great about yourself, I’m still here to hold you in my arms, and tell you just how special you really are. That’s one of the best parts of being a mom! You can tell me all your secrets, and they’ll be safe with me. I won’t ever love you less, but I can PROMISE that I will ALWAYS LOVE YOU MORE!

Ethan, having Asperger Syndrome doesn’t define who you are as a person in this world; no, not at all. It is you that defines who you are as a person. It is you who defines how amazing a person with Asperger Syndrome can be!

You are my son, and I love you more than life!

When others try to make you feel bad about yourself, and there will be some who try, you remind them that you’re a child of God! Remind them that in His eyes and mom’s, you are wonderful! You need to remind yourself of this, too, when you feel upset. The more you remember these things I tell you, the less people will be able to hurt you with mean words.

I can’t wait to see what an amazing man you will become. It makes my heart fill with joy, and my tummy feel like there are butterflies in it! I’m so proud to call you my son, Ethan. I’m so thankful God chose me to be your mom, because no one else could love you as much as me!

“I’ll love you always and forever!” has taken on a whole new meaning in my heart because of you. I am blessed to say, “God gave you to me!” I love you!

This “In Their Own Words” essay was written by Jolene, the mother of a son who has autism.

“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.

The Donnas Tour to Benefit Autism Speaks

June 10, 2010 1 comment

Hard-rock, all-girl band The Donnas are headlining a summer concert tour to promote autism awareness in conjunction with Autism Speaks. The Donnas will be joined by New York-based groups The Click Clack Boom and The Vanguard throughout the tour, along with special guests Elevator Fight, Turbogeist, and Reserve for Ronde on select dates. The tour is sponsored by Gibson, USA, and produced by Andy Hilfiger Entertainment and benefits Autism Speaks. See Dates below.

Dates and Destinations:
June 10 – New York City, NY – The Gramercy Theatre
June 11 – Philadelphia, PA – Theatre of Living Arts
June 12 – Cleveland, OH – Agora Theatre and Ballroom
June 13 – Chicago, IL – Double Door

Tickets are available through Ticketmaster or at www.thedonnas.com. Doors open at 8 p.m. for all shows.

The tour was conceived as a way to promote awareness of autism spectrum disorders. One of the members of The Click Clack Boom has Asperger Syndrome. The tour’s goal is to help others who are affected by a lack of understanding as much as autism itself.

In Their Own Words – Before It Had a Name

June 10, 2010 27 comments

Long before it had a name, long before there was any type of research, long before there was acceptance by society, long before there were resources for families and the children, my youngest brother had a form of autism. This was back in the early 60’s. No one had a name for it so he was labeled emotionally immature. Now it is called Asperger Syndrome.  He read books (Homer), newspapers, magazines and retained what he read at the age of two. He was doing simple arithmetic by three and none of this was taught to him. But ask him a question or his opinion on something and he could not communicate what he wanted to say. That lasted all through his lifetime. He could not fit in socially. He had a brilliant mind but could not share that with people. It wasn’t that he was emotionally immature; he just didn’t know any better.  He was family-oriented. He cared about people in general.

A couple of weeks ago we were looking at old family movies and there was one of him as a baby about a year old. I did notice something different but due to  the lack of  research back then no one picked up on it. When he would go into his trance his eyes would get this look and he would get a slight grin on his face and no one could reach him abruptly. You had to do it gently and calmly, otherwise he would jump and get excited. In the movie he was sitting on somebody’s lap and he started that stare. Little did we know at that time what was going on.

My brother eventually attended a special education school and a sheltered workshop where he thrived. It was a great place for him. He went to companies all over the city of Pittsburgh and even traveled when other people would not walk three feet out their door. Unfortunately, for my family and the world, my brother passed away three years ago from cancer.

He taught us in those 15 months how to go through a painful and grueling treatment plan with a positive attitude. He taught us how to die. He never gave the nurses, doctors, and aides one second of problems. He handled every treatment, test and surgery like “this is what we have to do to get it, so lets get it done.” I would explain what each procedure was and he would be fine with it.

If only all patients could be like the man who was diagnosed with a mental disorder not yet named when he was born, lived long enough for it to be identified and then proved to the world, that when it truly counts, people with forms of autism can and are the strongest people we have. My brother Jim was 43 when he died.

This “In Their Own Words” essay is by Peg Bittner, of South Park, Penn.

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.

Autism Affects 1 in 110 Children – $25 Helps a Family During the Critical First Months

June 2, 2010 3 comments

When a child is diagnosed with autism, his or her parents are often left feeling overwhelmed and confused about what to do next and where to turn for help. Autism Speaks’ 100 Day Kit is a valuable tool for these families and helps make the first few weeks and months after diagnosis a little less daunting. In order to defray the cost of the 100 Day Kit and provide it to newly diagnosed families, we need your support. Each kit costs $25 to produce.

Please support this very important initiative, which directly assists families affected by autism NOW.

The 100 Day Kit includes information about autism and dealing with the news of a diagnosis. The personalized kit lists local service providers, support groups, recreational activities, sources of legal information, conferences, local autism organizations and information about the local chapter of Autism Speaks. It provides insight into getting services for a newly diagnosed child and explains various available treatment options. A week-by-week action plan helps walk a family through the steps they need to take to ensure that they are on the right track. The kit also includes a safety plan and a list of recommended books and informational websites. In March, Autism Speaks launched a separate Asperger Syndrome and High Functioning Autism Tool Kit.

Families whose children have been diagnosed in the last 6 months may request a complimentary hard copy of the 100 Day Kit or the AS/HFA Tool Kit by calling 888-AUTISM2 (888-288-4762) and speaking with an Autism Response Team Coordinator.

Every 20 minutes, a child is diagnosed with autism. When families first get the diagnosis of autism, it can be difficult. Our hope is that the “100 Day Kit” will provide families with a greater sense of hope, with resources, and information that will help make those first few months just a little bit easier.

Thank you from the bottom of our hearts for your continued support.

Destination: Independence

June 2, 2010 2 comments

To date, Autism Speaks has funded $1.9 million in Family Services Community Grants to more than 100 service organizations around the country in the areas of education, recreation; equipment/supportive technology and young adults/adults.  The following is from one of our recipients from 2008, the Asperger’s Association of New England which serves individuals with Asperger Syndrome throughout New England:

The Asperger’s Association of New England, or AANE, is very grateful for the generous grant from Autism Speaks that allowed us to offer the Destination: Independence program. Destination: Independence consisted of a series of four courses on independent living skills, reinforced through one-on-one coaching under AANE’s Life Management Assistance Program (LifeMAP). Destination: Independence was designed to meet the practical needs of young adults with AS, who tend to be less mature than neurotypical young adults, are often stuck in their attempts to establish independent lives, and are less likely to be able to resolve their problems though traditional interventions such as “talk therapy.”  Participants were able to learn independent living skills in a hands-on manner; learned life tasks with the assistance of a coach; increased independence; and employed problem-solving, social interaction, relationship building, and social pragmatic skills.

One participant wrote on his evaluation form:
I wanted to give you a little feedback on what I am working on. As you may know, I am going to graduate from college in May and I do not think I would have passed this last course without the help of Destination: Adulthood and my LifeMAP coach. So I accomplished that goal. Now, I am working on volunteering at the JFK library and getting a part-time job. Thanks for the help, T.

Another wrote:
My LifeMap coach and I have been working on me learning how to use transportation which I think that I could still use practice on. We also worked on going grocery shopping and making healthy food and drink choices at the grocery store! She was helpful with my goals and I would like to continue to work with her.

A coach wrote:
I see increased confidence in the client due to my (the coach’s) validation of her struggles and challenges, and due to success in overcoming of obstacles. We are close in age and so I found that the client looked up to me like an older sister or just a role model. I noticed that my compliments and acceptance of who she was and my encouragement for her attempts at finding a job, acquiring a driver’s license, etc., helped her accept that while her pace might be slower than her peers’ she would eventually get there.

Another coach wrote:
The client, a recent (out-of-state) college graduate, was also very isolated and had the goal of maintaining social relationships, but it became clear that she did not have local relationships to maintain. The coach accompanied her to events at AANE initially, and eventually she began to attend on her own. The coach’s involvement in getting the client to come to AANE was instrumental in making new relationships and eventually led to the client joining a weekly AANE support group and connecting to a therapist through AANE as well.

Congratulations to AANE and Destination Independence on their wonderful program!

Autism Speaks in currently accepting Letters of Intent until June 10, 2010 – get those great ideas in to us so we can continue to serve the community!  Please also 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.

“The More You Know” Autism PSA Starring “Parenthood” Cast

May 20, 2010 5 comments

Many thanks to Peter Krause, Monica Potter, and Max Burkholder of NBC’s “Parenthood” who filmed this PSA to raise awareness about autism and Autism Speaks. This PSA, in the “The More You Know” series, aired after Tuesday night’s episode, Team Braverman, which featured members of the family participating in a Walk Now for Autism Speaks event.

Donor Story – Rourke Barsanti

May 13, 2010 3 comments

Nantucket Elementary School fifth-grader Rourke Barsanti has Asperger Syndrome and he is a wonderful self-advocate and fundraiser. Last year, he did a PowerPoint presentation about people with autism and presented it to his third grade cluster. This year, he raffled off a whale that he made and donated the proceeds, $62, to Autism Speaks.

Just like Rourke, his family (mom – Sydney, dad – Bob, and brother – Beck) is very supportive of Autism Speaks and the Nantucket Autism Speaks Resource Center. His mom, Sydney Fee Barsanti, is a co-chair of the Nantucket Walk Now for Autism Speaks and a veteran team captain.

Tune In – Team Braverman on NBC’s”Parenthood”

May 12, 2010 14 comments

Tune in to NBC’s “Parenthood” next Tuesday, May 18 at 10 p.m./9 Central. The all-new episode, Team Braverman, features members of the family participating in a Walk Now for Autism Speaks event.

Peter Bell,  Autism Speaks’ Executive Vice President, was on set in Los Angeles and penned a blog post about his experience. Earlier this season, we spoke with Jason Katims, the show’s writer and executive producer. He tells how having a 13-year-old son with Asperger Syndrome inspired one of the show’s main storylines.

Check your local listings for show information.

UPDATE: Watch the entire episode here on Hulu. Also, the episode is being re-broadcast on Saturday, May 22 at 8 p.m. EDT. Check your local listings for show information.

Watch “The More You Know” PSA starring the cast of “Parenthood,” which aired after the episode.

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