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Posts Tagged ‘Asperger Syndrome’

In Their Own Words – The Lake

September 5, 2010 7 comments

This “In Their Own Words” is by Taran Burns, a young man with Asperger Syndrome.

I have Asperger’s Syndrome. I’ve known since I was 16, now I’m 23. My daily life is filled with anxiety, agoraphobia, paranoia, and usually a deep depression that takes a lot of effort to snap out of. When I decide I need a break from the chaos of work and the cacophony of city sounds, being completely crowded and yet so alone, I escape to Wales.

This lake in Wales gives me an instant sense of relief. I am one with the world and completely at peace. The lake connects me to my childhood, nature and a feeling that I am alive. Here, in my own company, I do not feel alone.

This picture was taken by Taran Burns on Christmas Eve, at Mamgi’s lake, Cnwch Coch, Ceredigion, Wales.

“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.

In Their Own Words – In Opposition to DSM-V

September 4, 2010 104 comments

This “In Their Own Words” is by Hannah Fjeldsted, who has Asperger Syndrome. Hannah, a rising college senior, interned with Autism Speaks when she was in high school. You can learn more about Hannah in her essays, Living with Asperger’s Syndrome (Part 1) and Living with Asperger’s Syndrome (Part 2), which were featured on AutismSpeaks.org.

The American Psychological Association (APA) has recently announced a proposal to do away with the diagnosis of Asperger’s Syndrome in the DSM-V and instead group it with the Autism Spectrum. Under this proposed revision, Asperger’s will no longer be referred to as its current title, but will instead by renamed “high-functioning autism.” As someone with Asperger’s, I am strongly opposed to this proposal and I firmly believe that autism and Asperger’s should continue to be classified separately. This proposal will do more harm than good because it will further perpetuate stereotypes and misunderstandings about Asperger’s, it will serve as an insult and a mockery to those who are severely affected by Asperger’s, it will cause further confusion and ambiguity in diagnostics, and it will attack the identity in which many Aspies, like me, take pride.

First of all, many Aspies already suffer enough from the negative stigma and stereotypes society holds against them. To call Asperger’s “high-functioning autism” or “a form of autism” will only contribute to this stigma. The label of Asperger’s at least gives observers the impression of intelligence and ability. But, when most people think of “autism,” they think of someone who should be institutionalized and cannot live independently. Therefore, if people with Asperger’s are merged under the autistic group, brilliantly gifted and capable individuals could be unfairly stereotyped as incapable and unprofitable. Because it is a natural human tendency to stereotype groups of people, society tends to assume that all people with autism and Asperger’s are the same and fails to acknowledge the variations in the spectrums of these conditions. We Aspies are already dangerously stereotyped within our own group and to incorporate us into the autistic group will only generate more inaccurate stereotypes and misunderstandings about us. For example, many people with Asperger’s are not hired for a job or are denied promotion or advancement in an occupation because their employers assume that all people with Asperger’s are incapable of performing the tasks required. They might stereotype all Aspies as being completely inflexible, clinically hypersensitive to the sensory environment, or 100% incapable of getting along with or relating to their coworkers, without realizing that the Asperger’s symptoms vary according to the individual. Imagine how much worse this stereotyping will get when people with Asperger’s are placed under the same category as severely autistic people who never learn to speak, who never learn to independently tie their shoes or brush their teeth, and who need assistance with every aspect of their life. Imagine what other opportunities will be unfairly denied to capable Aspies who are only mildly affected based on the misconceptions society has about autism. The DSM-V proposal will do Aspies a disservice, not a favor because it will only exacerbate the damage that labels do.

Additionally, I also find the DSM-V proposal to be an act of insensitivity toward the adversity people with Asperger’s encounter. I’ve always been annoyed and offended when Asperger’s is referred to as “a mild form of autism,” which is how it will be classified under this suggested revision. Let’s get one thing straight. ASPERGER’S IS NOT MILD! As Tony Altman writes in The OASIS Guide to Asperger’s Syndrome, “Asperger Syndrome is a serious, lifelong disability that requires individualized expert intervention and should be treated as such. There is nothing ‘mild’ about the challenge people with AS face” (27). “You may have heard Asperger Syndrome described as mild autism, but as one mother aptly put it, ‘My son doesn’t have mild anything.'” Although we Aspies might have gifts and talents that severe Autistics don’t, that does not mean that our struggles aren’t real. In spite of our outstanding cognitive abilities, many Aspies have difficulty making friends, become lonely and isolated, and might even suffer from depression and anxiety. Many Aspies also struggle to find and keep jobs or live on their own, and face rejection and exclusion in an unjust society that puts too much emphasis on social skills. I have been able to overcome many of my social difficulties, dramatically improve my interpersonal relationships, and live a normal, prosperous life thus far. But, that progress did not come without years of hardship, exhausting work, blood, sweat, and tears. I had to get a lot of therapy to get to where I am now. The adversity associated with Asperger’s is indeed genuine and real and the APA needs to be more sensitive and considerate toward that adversity. Asperger’s should continue to be classified separately from autism because we Aspies have our own unique trials and tribulations that we work hard to overcome. Let us not pretend that Asperger’s is “easy” by calling it “mild autism,” “high-functioning autism,” and so forth.

I also believe that Asperger’s should remain separate from autism because a separate diagnosis is more logically accurate in my opinion. I don’t believe Asperger’s should be incorporated into the autism spectrum, but should be its own spectrum. In the DSM, Asperger’s shouldn’t be considered “on the autism spectrum,” but should simply be called “the Asperger’s spectrum.” Even Asperger’s alone can vary from mild to severe; In that manner, it really does have its own spectrum. As Karen Siff Exkorn wrote in The Autism Sourcebook, “Asperger’s is sometimes mistakenly referred to as high-functioning autism because children with this diagnosis tend to have average or above-average intelligence and typical or advanced language skills. But, in reality, Asperger’s is not high-functioning autism. The difference between a diagnosis of Asperger’s and high-functioning autistic disorder lies in the realm of communication. Because children with Asperger’s develop communication skills within the typical range for the first few years of life, they usually present strong verbal skills, which is not a component of Autistic Disorder” (21). Therefore, Asperger’s should be classified as its own spectrum of diverse and variable individuals with strong intelligence and verbal skills because strong verbal skills are a truly significant characteristic that distinguishes Aspies from autistics. I don’t think it makes sense or does any good to put a strongly verbal Aspie with an advanced vocabulary in the same category as autism when some autistics never learn to speak.

I also believe that the DSM-V proposal will make diagnostics more ambiguous. If we incorporate Asperger’s into the autism spectrum, the spectrum will only get wider and it will be more difficult to assess the severity of this disorder in its future victims. Some supporters of this proposal have argued that it’s more productive to eliminate more labels and divisions, but I believe the contrary is true. I like it when there are more specific labels and divisions in diagnostics because it increases specificity, clarity, and simplicity and I believe that future parents of autistic or Aspie children will benefit from this specificity. If Aspie children are only diagnosed as “autistic” and are no longer given a separate label, that title will raise more questions like, “What form of autism does this person have,” “How severe is it,” “What are the extent of the symptoms,” etc., The generality of the autism label will give parents less guidance about the proper interventions to take for their child’s best interest. The spectrum will become so ridiculously wide that the parents won’t even know where to begin helping their child. But, a title of Asperger’s is much more specific and raises fewer questions. A separate diagnosis of Asperger’s will give future parents a much better idea of which direction to take to meet their child’s specific needs. The more divisions we have in diagnostics, the less ambiguity we have and the more precision there is. Greater precision and clarity yields greater accuracy, efficiency, and productivity.

The most personal reason I am against this DSM-V proposal is that I consider it to be an attack on my identity and I’m not the only Aspie who believes this. Asperger’s is indeed part of who I am and I have grown to become proud of that title. I take great pride in my positive aspects of Asperger’s, like intelligence, memory, and vocabulary, and I do not want those gifts to be overshadowed by merging them into a title that is perceived to be more negative. Besides, many respectable and inspirational figures, like Albert Einstein, Wolfgang Mozart, Marie Curie, Thomas Jefferson, and so forth are believed to have had Asperger’s. Many Aspies, like me, are honored to be associated with such geniuses and it would be a shame indeed to have this sense of pride taken away. We, Aspies, are unique in our own way and not “just more autistics.” I wish the APA would honor this uniqueness we hold dear. I will always refer to myself as someone with Asperger’s, no matter what any individual or organization says. If you’re an Aspie who’s determined to protect your identity or if you’re simply concerned about the ramifications of this proposal, stand with me and oppose DSM-V.

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.

In Their Own Words – Telling It Like It Is

August 12, 2010 9 comments

This “In Their Own Words” post is written by Jake Davis of Omaha, Neb. He is a single father of three children, one who has autism.

I’m a 31-year-old divorced father of three children, who I have full custody of: my boy Ian (9) and his sisters Sienna (8) and Ashlyn (6). I’ve had them on my own since 2005. Yes, it was trying in the beginning, but new soon becomes normal and normal becomes manageable.

My son, Ian, is an Aspie (has Asperger Syndrome) and he also has elements of Semantic-Pragmatic Disorder. Most people reading this will have a fair idea of what this entails, and for those of you who don’t, I’ll put it in a nutshell. Ian has an amazing imagination, almost superhuman technical recall, and he’s very blunt and matter-of-fact in his conversations. His imagination leads him to very interesting solutions or observations from time to time.

I love the way Ian’s thought process works. No boundaries, no form, no restrictions. Just a little boy’s logic, voiced the moment he thinks it.

The way he works is normal to me. I forget that it can sometimes be jarring or unusual to others. I try to work with him and explain the ins and outs of social interactions and the right time and place for things. He uses his experiences to dictate how he should respond in a situation he’s encountered before, sometimes it works, and sometimes it doesn’t. Then, there are those rare moments when you get to watch the results of an unexpected situation.

Earlier in 2007 we had moved to the western end of Nebraska from Omaha which had interrupted the every other weekend visitations with their Mom. During the summer we still kept the six week visitation schedule in place, and it was July, so they were out of school and it was time for the kids to go on their vacation.

They knew Mom was coming, and so we packed everything up and waited for her to show up the next day.

Their Mom arrived and we loaded car seats, snacks, their bags and toys for a summer adventure. I hugged and kissed the kids goodbye and as they pulled away, I decided that I had earned a nice long afternoon nap, and I went up stairs, laid down, and fell fast asleep.

I was jarred awake, seemingly only seconds later, by the ring of my cell phone. It was my ex wife.

I didn’t get out more than a groggy “Hello?” before I was hit with “Jake, I’m going to jail!” In my newly awake stupor, I wasn’t connecting all the dots. More explanation was rattled off as my brain was trying to interpret these words with varying degrees of success.

She had been pulled over for drifting onto the shoulder in front of a State Patrolman. I was still failing to understand how driving on the shoulder equals jail.

The unfortunate and embarrassing part is that my ex was behind on her child support payments. It wasn’t (and isn’t) much money at $150 a month. I don’t really need it, and when I did get it, I’d treat the kids to dinner and a movie, or a toy, or some new item of clothing they’d see while we were out shopping. She had some trouble keeping a job and a place to live. So I didn’t worry about the money (and they were going to their Grandma’s for the summer, so I wasn’t worried about lack of a permanent residence). The state however, did worry about it, and unbeknownst to me, had issued an arrest warrant for non-payment of child support. And they suspended her license.

After I had time to process the statement and the reason, I got dressed as fast as I could and drove the 40 miles away to where the Patrolman was waiting with the kids and their Mom. The Trooper had waited for me because he didn’t want to call child services and didn’t want to put their Mom into cuffs in view of the kids.

I arrived and quickly I loaded the kids stuff into my car (everything I had loaded into hers about an hour prior), and the kids hugged her goodbye and said they’d see her later.

On the way back to the car Ian says “Dad, we gotta bust her out!”

I stifle both a feeling of panic and laughter, responding with the tersest whisper I can manage, “Ian, be quiet! Get in the car!”

Undeterred by my attempt at handling the situation Ian pipes up even louder “Maybe we can bake her a cake with a file in it!” Again, fighting laughter, I whisper, “IAN! GET IN THE CAR NOW!” while quickly ushering him into the vehicle.

From what their Mom said, the Trooper had heard everything and thought it was pretty funny and had wondered aloud what cartoons Ian had been watching.

Fast forward three years later, their Mom got caught up on her child support, has regular work and is due to be married next summer. Ian still quite plainly tells it like it is, and I’ve been laughing the whole way.

“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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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.

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