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Posts Tagged ‘Asperger Syndrome’

In Their Own Words – I Am Michael

April 28, 2010 67 comments

This weekend, we received the following e-mail (and accompanying poem) from Gary Herrmann, a member of our community who is the father of a nine-year-old named Michael, who has Asperger Syndrome.

Like a lot of kids with Asperger Syndrome, my son has difficulty in social settings. He has one good friend. At the time he wrote this poem, both families had been very busy for a couple months, and he hadn’t been able to see his friend Billy very often. That, combined with some of the difficulties he had been experiencing in school lately, probably contributed to the feelings he expresses in the poem below.

The assignment was to type the poem. He was given some direction as to how each line should begin and word to use in each. 

I was overwhelmed by the poignancy expressed in his poem. As you will see, my son’s name is Michael, and he has a heart the size of our planet … Maybe my son’s poem will strike a chord with parents and families and remind them that even if they have difficulty expressing them, our children experience all of the same emotions we do.

I        am    Michael.
I     wonder    if    I   am   human?
I   hear  ringing    all  the    time.
I   see    molecules ……I   think.
I    want    more   friends .
I   am    lonely.
I   pretend      I   have    more       friends  .
I feel       left  out.
I  have   the   record   of        the             least     friends    in    the     school .
I     worry    if  I   have   no   purpose.
I say  jokes  to   be   funny.
I  hope   people   now   understand.
I   am  Michael.                      

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.

Being One of the 3%

March 17, 2010 4 comments

John Elder Robison Decides to Take a More Active Role

March 9, 2010 3 comments

This guest post is by John Elder Robison. John Elder Robison is a free range Aspergian male, having grown up in the 1960s before the Asperger’s diagnosis had come into common use. After dropping out of high school, John worked in the music business and the electronics industry before founding Robison Service, a specialty automobile company in Springfield, Massachusetts. Today, John serves as an adjunct professor in the department of Communication Sciences and Disorders at Elms College in Chicopee, Massachusetts. He has also served on the public review board for the National Institutes of Mental Health, and he is currently involved in TMS autism research at Harvard Medical School and Beth Israel Deaconess Medical Center. John is the author of Look Me in the Eye, my life with Asperger’s.  John’s writing has been translated into 18 languages and is sold in 60+ countries.  John’s next book, Be Different!,  will be published in the spring of 2011. In addition to his autism advocacy work, John is a lifelong car enthusiast, an avid hiker, a photographer, a music lover, and a world-class champion eater.  He lives in Amherst, Massachusetts.

Readers of my blog know that I’ve been concerned about the direction of autism research for a long time. I am also troubled by the way we allocate dollars in general in the autism world. I’m a fairly action oriented guy, and I don’t like to sit around and worry. I want to do something; I want to take action. If this were a political issue, I’d have to run for office. Even the thought of that makes me cringe. Luckily, I now have the opportunity to make a difference without taking such an extreme step.

Last year, I was invited to join the Public Review Board for the National Institutes of Mental Health. Today I have agreed to join the Scientific and Treatment Advisory Boards of Autism Speaks. Founded in 2005, Autism Speaks quickly became the largest non-government source of autism funding in this country. Last year, they allocated 37 million dollars for autism research.

In the past, Autism Speaks has been criticized for not having any autistic people in its organization. They do have autism parents and grandparents, of course, but the views of parents are often at odds with those of their autistic offspring. People on the spectrum rightly feel that we – the affected individuals – should be at the heart of any funding decisions that may affect us. I agree with that, so I decided to take an active role.

I’ll be joining a board made up of thirty-some scientists and two parents. Each of us will have the opportunity to read, consider, and discuss proposals. The Autism Speaks review process is familiar to me; since it’s modeled on the system developed the NIH. I feel it’s a fair way to allocate limited resources and I’ll surely make the most of my opportunity.

I believe it’s a great honor to be selected for this role, first by the government and now by Autism Speaks. I will certainly do my best to live up to everyone’s expectations. I’m aware that my vote is only one among thirty, but the fact that I myself am on the spectrum will make a difference, and I certainly believe in speaking up for whatever I support. So I’m off and running!

One of my principal areas of concern will be identifying and funding studies that have a high likelihood of improving the lives of autistic people today. Research into causes of autism is important, but I want to see more research aimed at remediation of specific components of autistic disability. The TMS work I’m involved with at Harvard/Beth Israel is a good example of work that can lead to better lives for today’s autistic population.

There is also a lot of potential in behavioral therapy. Therapies like ABA and RDI have been successful for some on the spectrum, but they’ve totally failed for others. Are there new cognitive therapies with promise? That too is something that could make lives better today.

In addition to my work on the science side, I hope to work more closely with the Wrights and Autism Speaks management to help the organization appreciate the needs of autistic people at all points on the spectrum. That’s going to be a real challenge because the views of different people on the spectrum are so widely divergent.

When the Wrights founded Autism Speaks their focus was on children with significant autistic disability. While that remains important, I hope to broaden the organization’s focus to welcome and support less impaired people too. I also want to bring some attention to the plight of adults on the spectrum, many of whom grew up with no awareness of autism at all.

At one end of the spectrum autism may seem like a total disability. At the other end, autism can enable us in some ways while crippling us in others. It may seem like less impaired people need fewer services and less support, but it’s more correct to say their needs are just different. For that, they are no less real. I hope people everywhere can learn and share from one another and in doing so, all our lives may be enriched.

Jonathan Mitchell made an excellent point in one of his blog essays. A while back, I said I wanted to be accepted for who I am, and I want to live my life like any other person, in peace. He said he wants the same thing, but his autism prevents him from “living like anyone else.” To do that, he needs help remediating some of the disabling aspects of his own autism.  However, at this moment, the help he needs does not exist because science has not yet found the answers. As a member of Autism Speaks, I will do my best to advocate for research that can help people like Jonathan live better lives.

I believe each of us should be free to choose therapies or treatments – nothing should be forced upon us. After all, what works for me may do nothing for you. But before we can make those choices, viable therapies must exist. In today’s world, the workable solutions for autistic disability are far too few. I believe Autism Speaks is committed to funding research to find the answers we need.

At the same time, we want and need greater public awareness of autism. Autism Speaks has done a great job raising awareness but there’s a lot more to be done.

There may not seem to be much common ground between the extremes of neurodiversity and those who seek a cure, but I’ll find what there is and try to build more. I hope everyone can see the potential if we can all rally together in pursuit of a common goal.

Whatever our differences, there are many things we can all agree on, such as the need for greater acceptance and opportunity for people with autism. We have issues with schools, jobs, and even the way the law treats people on the spectrum.

As always, I am here to respond to your questions and comments. I look forward to a new level of interaction with this community and the larger community Autism Speaks has built.

John Elder Robison, Author of “Look Me in the Eye,” to Speak in N.J.

February 23, 2010 1 comment

John Elder Robison, author of bestselling memoir, ”Look Me in the Eye,” is appearing tomorrow (Wednesday, February 24) at 5:30 p.m. at Drew University, in Madison, N.J.  The event, which takes place in room 107 of the University Center is free and open to everyone.  He will be speaking and answering questions from the audience, followed by a book signing. Robison, who has Asperger’s Syndrome, will be talking about life on the autism spectrum, growing up and finding acceptance, and the latest research he is involved in at Harvard Medical School and Beth Israel Deaconess Medical Center in Boston.  

This event should definitely be worth your time if you are in the area. Either way, be sure to check out “Look Me in the Eye” – it is a fun and compelling read.

In Their Own Words – All You Need is Love

February 18, 2010 1 comment

I guess she is just depressed because her overbearing sister steals all of the attention. That’s why she doesn’t smile, run, play and laugh like a normal toddler. If I plan to home-school this child I have got to figure out why she hates to practice her ABCs and manuscript. She doesn’t care if she gets a sticker or not. I know she knows how to do it; she is just refusing. Her head is down in her arms on the table. Is it really possible for a 3-year-old to be this stubborn? She won’t even come out for a cookie!

My mom used to get motion sickness; maybe that’s why my daughter gets sick every time we get in the car. But why does she spin herself in circles in the backyard for what seems to be hours at a time without even getting dizzy? That just doesn’t make sense. It is strangely funny and weird that she likes to throw herself backwards on the floor over and over and over again as her father and I sit and watch completely bewildered and entertained at the same time. What two-year-old does that?

“I did. I asked the doctor again. She said it’s just her personality,” I tell her father.

Why won’t she get dressed? There is no reason for her to be so difficult about getting dressed. Just put on the jeans and shirt with the cute little design and let’s go already! I am going to be late to work again! She’s four years old. Her sister has been dressing herself and changing numerous times a day, much to my dismay, on her own since she was at least two. What is the problem? This child doesn’t seem to want to wear anything except pajamas or sweat suits. She can’t wear sweat suits everyday.

How did she get that math problem? She’s not even in school yet. Was she even listening to us? She was in the other room. She just blurted out the answer like it was nothing to her.

Why is she overreacting? I am just brushing her hair. I am being so gentle. It would look so cute if she would just let me put this pony tail in.

I read an article on autism. Eva doesn’t have autism. It is an interesting subject though. I’ll read it and think that thankfully my child does not have autism!

Okay, she’s five. It’s time to learn to ride a bike. Oh my goodness, she’s going to hurt herself if I let go. Why can’t she get this?

Look both ways when crossing the street. Hold my hand when we walk in the parking lot. You have to watch where you are going. Stay close to me. Be aware of your surroundings. Don’t wander in the store. Now I understand why parents have leashes for their kids. I have to physically have a hold on my child or she will disappear. Don’t talk to strangers. Yes, the store clerk is still a stranger. Please don’t tell everyone we meet such personal family information. It is a good thing I don’t get embarrassed easily. Just smile, take her hand so you don’t lose her and walk away.

Big girls take showers, not baths. What is the problem? Why is she crying? Outright refusal. It has been twenty minutes and she still hasn’t turned the shower on. I don’t even take that long of a shower. It has been an hour since she got in. Okay, she’s finally done. Did you wash your hair? It’s not even wet. What were you doing in there for an hour? Okay, you have to get back in. More crying. I will come in with you and wash your hair for you.

I justify my actions. “I do not spoil her! How outrageous! No, I don’t make excuses for her!” I know, although I can’t understand it, she cannot do it by herself. So I do it for her.

Back to the doctors. It’s a different doctor and this time, I insist. “There is something wrong. She is seven. She cannot ride a bike. She would trip over a blade of grass. She’s awkward.” She has my compliant daughter do a few minor gross motor activities and tells me she is not where she thinks she should be and sends us to a physical therapist that does some more in-depth testing with her and finalizes that she has Sensory Processing Disorder. Phew! That explains it! That’s why she won’t wear jeans. That’s why she hates showers. That’s why she begs for back rubs. That’s why she falls so much. Eva spends a year in physical and occupational therapy. I notice most of the other children in therapy definitely have autism, yet I brush off the thought once again.

Two years later we are doing homework. I’m sitting right next to her, keeping her on track the whole way and trying to be patient. I am explaining everything in a way she can understand.

“Wow! Did she just re-write that entire paragraph word for word after only reading it once? I can’t do that. I’m going to Google that.” And so I do because I am so intrigued. Every site it takes me to mentions autism.

At the age of nine, I take her to see a neurologist. I am convinced there is more to my child’s strange and intermittent brilliance, odd ways and sensory issues. How can I understand her? How can I help her, and how can I have a relationship with my child if I don’t know what is going on inside that mind of hers? After a few checklists and hour-long sessions of questions regarding Eva’s social interaction and behavior and we have a diagnosis! Asperger’s Syndrome. Tears form, but they are tears of relief. The relief of finally knowing.

For nine years, her father has insisted that something was just not right. When he suggested autism to me a few years back I told him I was on top of it. She had sensory issues, but I knew. My gut and my instincts told me daily that she just was not “normal.” I wanted to believe her doctor. It is just her carefree personality. So she’s different? She’s just innocent and naïve. That can be a good thing, right?

When I called her father to tell him about the diagnosis, he responded, “I told you. No one ever listens to me. She is to stay in a normal classroom. She is not stupid. I think she’s a genius. Do you hear me? Don’t let them dump her off.” I promise him that I won’t. I read every piece of information I can find on Asperger’s Syndrome and high functioning autism and I am convinced he knew because he had it, too.

My daughter is now going to be 11 years old. She is possibly the coolest person I know. She attends a regular school, is in a regular classroom and is on the honor roll. Her teachers, therapists and IEP team are extremely cooperative and proactive. She is in several social skills groups and she takes showers now. She has friends, attends sleepovers and although not gracefully, she rides a bike, dances and roller skates. She makes us laugh and makes us wonder. She thinks life is a bowl of cherries. She doesn’t sweat the small stuff. She is patient, faithful and so forgiving. She is forgiving of the world for not always understanding and not always being so kind. Forgiving of my ignorance at what she is talking about sometimes. Forgiving of the ever-confusing way us atypicals go about things. Eva continues to be kind though, to everyone she meets. She is incapable of being mean or malicious or untrue.  

“All you need is love, mom” were the words of my three-year-old-Beatles-fan daughter who has Asperger’s Syndrome.

 This “In Their Own Words” essay is written by Launa M. Taylor of Willoughby, Ohio.

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.

A Single Diagnostic Category for Autism?

February 10, 2010 6 comments

Today the American Psychiatric Association announced plans to change autism diagnostic categories in the newest version of the Diagnostic and Statistical Manual (DSM).  Notably, it has been proposed that the diagnoses of Asperger syndrome and Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) be removed from the manual.  A broad category of Autism Spectrum Disorder has been proposed instead.

These proposed changes are certain to be met with a wide range of reactions, and such reactions will depend on one’s perspective.  From the scientific perspective, research conducted over the past decade has shown that there is no strong scientific rationale for distinguishing among autism, Asperger syndrome, and PDD-NOS.  For example, research has shown that these subtypes are not linked to specific etiologies (causes) or specific treatment recommendations.  Studies have shown that autism and Asperger syndrome can show up in the same familes and that specific autism risk genes don’t aggregate neatly within diagnostic categories. Treatment recommendations for Asperger syndrome versus high-functioning autism or for autism versus PDD-NOS are not different.  So, from a scientific point of view, the changes in the DSM make sense.  The new classification system recognizes that autism is a spectrum disorder that varies quantitatively in symptom severity and expression.  The changes will allow us to look at the the landscape of autism broadly and focus on clusters of symptoms and seek etiological commonalities in disrupted signaling pathways that promise to tell us more than we have learned from considering each diagnostic category separately.

People in the community living with autism spectrum disorders may have a very different viewpoint, however.  For some individuals who have been diagnosed with Asperger syndrome or other subtypes of the ASD spectrum, the change in the DSM will be very disruptive and distressing. Many individuals personally identify with the diagnostic label they have been given and grown up with.  They may participate in support or advocacy groups that identify with a specific label, for example “Aspies”.  Thus, although the scientific and professional communities may institute a change in the diagnostic criteria, many may choose to use the original labels despite the changes in the DSM.  And there is nothing wrong with this.  In fact, there is precedent for this.  For example, “sensory integration disorder” and “nonverbal learning disability” are examples of labels that have been used by the clinical community, but are not specifically part of the DSM.

One potential positive impact of the proposed changes to the DSM is that they may help increase access to services to those individuals with Asperger syndrome and PDD-NOS who previously were denied access to autism-related services. From the perspective of a parent who is struggling with their young or adult child’s symptoms, it hardly matters what name is given to the collection of their symptoms. Increased access to services can help ease the burden of symptoms for those struggling to manage them.

We need to be respectful and compassionate about what a diagnostic change might mean for individuals with ASD and their families.  We invite you use this space to share your thoughts about this change and what it means to your family.  We will be listening and look forward to hearing your perspective.

In Their Own Words – Getting From There to Here

January 27, 2010 4 comments

My son, Justin, is a child with a medical and an educational diagnosis of Asperger’s Syndrome.

My wife and I have struggled to obtain educational services that would allow him to go onto higher learning and/or independent living to the fullest extent possible. An ongoing denial of a Free and Appropriate Public Education resulted in the public school paying for a private school placement for my son’s junior and senior years of high school.

We recently got my son’s high school transcript and his class ranking is #9 out of 424 seniors in the public high school that he is administratively enrolled in.

My son is a living reminder to parents of kids on the spectrum that you can get there from here. 

This “In Their Own Words” is written by David B. Cockrell.

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.

This Emotional Life – Tune In!

December 29, 2009 Leave a comment

This is a guest blog post from our friends at Vulcan Productions and NOVA/WGBH…

On the eve of a new year, as millions of Americans search for more meaning in their lives, Vulcan Productions and NOVA/WGBH have teamed with Harvard psychologist and best-selling author of Stumbling on Happiness, Professor Daniel Gilbert, to produce This Emotional Life.

This Emotional Life is a two-year outreach campaign anchored by a three-part, national broadcast series on PBS (airing Jan. 4-6, 2010) that examines the science behind our emotions, the challenges to our well-being and the keys to leading happier lives. We are so excited to engage the Autism Speaks community in our campaign. Everyone who lives with autism understands what an emotional journey it can be. This campaign aims to provide individuals with resources to make that journey a little easier.

Spearheaded by Microsoft co-founder Paul Allen’s Vulcan Productions, the project includes the PBS series – which features compelling personal stories and cutting edge research, along with revealing insights from celebrities including Larry David, Alanis Morissette, Robert Kennedy Jr., Chevy Chase and Richard Gere – a dynamic and content-rich website, a national outreach campaign and educational toolkits created to support topics within the series.

The first show focuses on relationships – how they’re built and why they’re important to human happiness. One of the stories in this first show is about Jason, a 29-year old man with Asperger’s syndrome. Jason discusses his constant struggle reading others’ emotions and signals, making it difficult for him to form relationships. He shares his daily struggle to be successful in social situations, a common issue for people with autism spectrum disorders. His story offers viewers a glimpse into the difficulties and frustrations those living with autism often face in their everyday interactions. You can take a look at some of Jason’s story here:

The campaign will continue on for two years post-broadcast. Through our website, the distribution of our early childhood attachment and military family toolkits, and several other initiatives, we will continue to promote the mission of this project. We are partnering with great organizations such as the National Alliance on Mental Illness, the Depression and Bipolar Support Alliance, Mental Health America, the Mayo Clinic and the Substance Abuse & Mental Health Services Administration.

You can view the trailer and learn more about the program on the “This Emotional Life” web site.

It is our hope that this campaign will offer you and your families support – whether it is through relating to stories like Jason’s, or visiting our website and finding information, resources in your area, or support from people just like you.

For more information, go to www.pbs.org/thisemotionallife.

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