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Posts Tagged ‘autism spectrum disorder’

Exciting Times in Early Diagnosis and Treatment

November 15, 2011 21 comments

Posted by Brooke Ingersoll, PhD, clinical psychologist, Michigan State University, East Lansing, and the recipient of an Autism Speaks 2011 Treatment Research Grant

We now diagnose autism spectrum disorders (ASDs) between the ages of 2 and 3 years, when symptoms become obvious. But over the last five years, we’ve been actively studying how to identify ASD symptoms in younger children, with the hope that earlier intervention can produce greater improvements in outcomes.

I was recently invited to write a review of these research efforts for the scientific journal Current Directions in Psychological Science. I’m excited to relate these findings to our families and friends as well:

In essence, the evidence is strong that many children who go on to a clear diagnosis of autism are already showing fewer early social and nonverbal communication skills at 12 months than do typically developing babies. These “missing” behaviors including imitating, showing objects to others and pointing to objects or events in the room.

My review of the research also showed clear evidence that targeted therapies can improve these early skills in young children with ASD —and might also produce improvements in other, later-emerging skills such as language and more mature social interactions. Despite these advances, much remains unknown about the early presentation of ASDs and the best way to intervene to improve these children’s outcomes.

While it is wonderful to see that we can identify and help very young children, I feel strongly that we must also increase research and improve therapies for older children with ASD. My current work, recently funded by an Autism Speaks treatment research grant, is evaluating the benefits of an intervention called reciprocal imitation training, designed to increase social engagement in adolescents with ASD and limited language.

With this intervention, we encourage non-verbal social behaviors such as imitation, gestures and eye contact. The intervention is adapted from social communication therapies that have shown success with young children with ASD who have not yet learned language. The early results have been encouraging, and we are very excited to continue this work in an effort to identify appropriate social interventions for older, nonverbal individuals with ASD.

Read more news and perspective on the Autism Speaks Science page.

Autism TV… Sort of.

May 24, 2011 8 comments

I recently left my longtime career as a local TV news anchor in Baltimore.  I was there for 21 years and during that time my daughter was diagnosed with an Autism Spectrum Disorder (PDD-NOS).  So,  I thought…hey, wouldn’t it be a natural fit if I could take what I know about telling stories and create a   television show with kids who are all over the “spectrum.”  Programming  that shows children and families, from all walks of life, dealing with the challenges and uniqueness of autism.  And maybe we could give them some help or ideas along the way. And maybe we could educate a mass audience about what makes autism special and why we all should care about these individuals who are all around us.

Well, the big cable channels weren’t biting.  The production companies I contacted weren’t going for it either. I mean, in theory, they liked the idea, but in reality they just couldn’t see it being very appealing for the long haul. Of course, I find the subject incredibly appealing and compelling!

Eventually I thought why not do it myself?  With the help of a very talented videographer, a guy who knows his way around the web, and many supportive friends…we created Real Look Autism. My version of Autism TV.

Real Look Autism is a video resource for anyone touched by autism.  We tell focused and beautifully shot and edited stories about therapies and strategies that are working for children on the spectrum. We look for even the smallest measure of success. Our slogan goes like this: “You tell us something that’s working for you…and we’ll show everyone else”.  So, because we look for what is “working”, our short videos have an element of optimism. And how can you not LOVE these kids, their parents, and the teachers and therapists who are so committed.  We keep it real and we aim to spread some hope and understanding.

Real Look Autism.com, thanks for visiting and watching! We hope you LIKE US on Facebook, spread the word and sign up to find out when we premiere another new video.

And besides… we don’t even run commercials… at least not yet!

-Mary Beth Marsden, Founder of Real Look Autism

In Their Own Words – Ten Things That I Wish You Would Accept, No Questions Asked

July 30, 2010 47 comments

This “In Their Own Words” essay is written by Lydia Wayman. Lydia is a 22 year old who “resides somewhere on the autism spectrum.”  Her three favorite things are her service cat, Elsie, her best friend and her mom. She recently wrote and published a book, “Interview with Autism,” for parents and caregivers about life on the autism spectrum.

I started blogging almost exactly a year ago as a way to process my circumstances better, as I always process better in writing, and hopefully as a way to demystify autism to parents and caregivers of those on the spectrum. I realized long ago that some people seem to have a knack for handling my quirks, while others … don’t.  This list, “Ten Things That I Wish You Would Accept, No Questions Asked,” arose from considering the things that the most positive people in my life have always done, while also thinking about what some not-so-positive people consistently do that causes a problem. I can’t speak to the truth of these statements for everyone on the spectrum, but I am guessing that there are many commonalities amongst us when it comes to these matters.

1. I can be surprisingly good at one thing (say, remembering conversations precisely as they happened many years after the fact) and surprisingly bad at another thing that you might think should be so much easier (like keeping track of receipts or remembering the procedure for filling a prescription).

2. Just because I have the words to type it does not mean that I have the words to say it.

3. I really do hate to melt down, especially in public. If there were another way out, I would always take it.

4. I never play stupid. If I ask a question or say I don’t get it, it means I don’t get it. Please don’t make me feel dumber by saying that I’m faking it, just because it seems straightforward.

5. What may be slightly bothersome to you, like the waistband on a pair of pants, can cause me to be a witch all day … or at least until I change clothes. If I’m crabby, it’s because something is physically uncomfortable in the sensory realm of things. Until that thing changes, I will continue to be crabby.

6. I can’t control my excitement over cats. So if you mention cats or point out a cat, realize that I’m going to get excited. Let me enjoy it. A little happiness never hurt anyone, eh?

7. I am often completely unaware of self-injurious behaviors. I scratch, hit, bite, and pick often, and much more frequently when I’m agitated for some reason. In the moment, I don’t know that I’m doing it; if made aware, it’s so compulsive that I almost physically can’t stop myself. But using my head, obviously I don’t like the results of it.

8. I am exactly the same person inside regardless of how engaged (or disengaged) I am with the environment and others in it. Yes, you might have to change some things based on how I’m reacting in that moment, but please continue to treat me like the same person that I am.

9. Engagement and happiness do not depend on one another! I can be just as happy off in my own world as I am fully engaged with you. However, a lot depends on you, here. If I’m disengaged and you’re forcing me to “act normal,” then no, I don’t feel very happy. If you’re interacting with me in a way that I can in that moment, then I can be as happy as I’ve ever been.

10. While autism does mean that I am absorbed within myself (aut means self, after all), that doesn’t mean that I don’t want you around. If you can come to me, rather than forcing me out of my world to come to you, then I’d love to let you in. There’s a whole world in here; maybe you should check it out.

“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 – Focusing on the “Cans”

June 27, 2010 6 comments

This “In Their Own Words” essay was submitted by Teresa Greenwood of Hays, Kansas, who has a daughter with autism.

This was my first celebration of World Autism Awareness Day. A year ago I didn’t know that April 2 was anything other than another day on the calendar.

Did I ever think about autism before my two-year-old daughter was diagnosed – no. Sure, I’d heard of it, and I sympathized with families that “had to deal” with a child with a disability. I did not know anyone with a child with autism, however. And I never would have thought it would affect my family, but it has.

Morgan’s diagnosis, and her progress since then, has changed my life for the better. I have more patience than ever before, and more understanding that we have to cherish every blessing we have. I am blessed to have Morgan in my life, and I would not change her in any way. Also, I am blessed with three other children who love their sister and embrace her diagnosis.

Of course, I grieve for the child she could have been without autism, but I also recognize the amazing child she is with it. When I drop her off at daycare and another two year old says “Hi, what’s your name?” I am reminded that Morgan only occasionally says “Momma” and mostly babbles without words. I know that she may never be fully verbal and will probably be in special education classes in school. The odds are she will never live independently. When she becomes excited or upset she will flap her arms uncontrollably. She easily becomes overwhelmed to where she has to drop to her knees and suck on her fingers. She is an extremely picky eater, like most people who have autism, and she has trouble sleeping at times. But I do not dwell on the “can’ts” and the “nevers.” I focus on the “cans.”

Morgan transformed from completely nonverbal with little eye contact to a bright child who babbles constantly. She will hold a pig and say “oink oink.” She will hold a cow and say “mooooo.” She also has a sheep, which says “baaaa.” She holds these animals to a toy hay bale to make them eat. She now waves bye-bye on occassion, and she has used some of the sign language she has learned. She will make a spider sign when she wants to sing “Itsy bitsy spider.” And she will pull her sisters’ hair if they get too close. She will run to her daddy when it is time to pray, and she will come crawl in bed with us in the middle of the night.

Morgan thrives in her therapy and learns quickly. And I can’t thank her therapists enough for taking the time to work with her, to help her become the person she was meant to be. Early intervention is key to successfully living with autism, and Morgan was fortunate enough to be able to experience that.

I watched a video of a speech by Temple Grandin, who has her doctorate’s degree and is a published author … and who also has autism. HBO recently made a movie about her, which I have yet to see. Watching the real Temple give a speech about her life with autism – and her successes since her diagnosis – gives me such hope that there is a place in this world for my daughter’s beautiful mind.

I sympathize with the people glaring at us in church because Morgan is holding her toy cow in the air and yelling “moooooo!” But I am not sorry, because to me there is not a more beautiful sound in the world than my autistic daughter finally finding her voice and saying words. Even if it’s barnyard talk.

On World Autism Awareness Day,  remember autism, and the millions of families affected by this spectrum disorder. Research is continuing so that hopefully, someday, more can be understood about this mystifying disabiliity. Until then, I will continue to grin at my daughter while she talks to her farm animals, being extremely proud of all she has accomplished at such a young age.

“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.

PBS’ This Emotional Life and Autism Speaks Present: “Growing Up With Autism”

April 26, 2010 7 comments

TUNE IN - “Growing Up with Autism” webinar
Tuesday, April 27, 1-2 p.m. EDT

Join a panel of scientists, parents, and individuals with an autism spectrum disorder (ASD) to learn what it is like “Growing Up with Autism.” Dr. Geraldine Dawson, Ph.D, the Chief Science Officer at Autism Speaks and Research Professor at UNC Chapel Hill will lead a discussion with  Connie Kasari, Ph.D. (UCLA), Holly Robinson Peete, and John Elder Robison, to address the challenges that face individuals with an ASD and their families as they are initially diagnosed, navigate peer interactions and age out of services as they enter adulthood.

The panelists will also focus on the different needs and abilities individuals with an ASD have in the hope of generating acceptance and support in the community.  This poignant webinar will combine professional experts with personal experience to offer unique insights and perspectives that will be valuable to all who are touched by this increasingly common spectrum of neurodevelopmental disorders.

To register for the free webinar, please visit https://www1.gotomeeting.com/register/563407008.

Stay informed about “This Emotional Life’s” on-going webcasting events with thought leaders in the fields of mental health and wellness by signing up for their bi-monthly newsletters.

If you miss the webinar, we will have information soon about how you can view it. Please stay tuned!

Being One of the 3%

March 17, 2010 4 comments

How Cool is That?

This is a guest post by Cheryl Cohen, who is the Online Community Director of IAN Project at Kennedy Krieger Institute.

A few weeks ago, in northern Maryland, we received the gift that kept on giving: two back-to-back blizzards that delivered nearly four feet of snow. Housebound for several days, I began to gain a better understanding of the phrase stir crazy, and I turned, like many people, to the Internet for solace.  Next time you are snowed in, stir crazy, or even simply curious about what families are saying about autism spectrum disorder (ASD), you should know about the Interactive Autism Network (IAN) and IAN State Stats, in particular.

IAN State Stats is a tool that shows you how families have responded to questions administered by IAN Research, the largest online autism research project.  IAN State Stats summarizes data on complex issues to indicate the overall status and trends in autism treatment, diagnosis, and expenditures. People involved in policy and public health decisions use these tools to compare state performance against national performance and to signal key issues to be addressed through policy interventions and other actions.  The data used for analysis reflect the current IAN Research data. 

Here is one of the charts from IAN Stat Stats:

This graph shows the mean (average) amount of time in months between the time that parents first felt that something was wrong with their child’s development to the time that the child was first diagnosed with an ASD. It compares the data reported by research participants in Maryland (the state that I selected) to the U.S. as a whole. Considering the vital importance of early intervention, this lag time (gap) between the time parents of children with ASD recognize that something is wrong and when they are able to get a diagnosis is of interest to policy makers and advocates.

The information presented is based on an analysis of responses from the questions:

  • How old was this child when you FIRST became concerned that something was wrong with his/her development? (Choices include a range of ages)
  • What was this child’s FIRST autism spectrum disorder (ASD) diagnosis?
  • When did this child receive this FIRST ASD diagnosis?

You can see that the lag time is very long, and that it varies widely by ASD diagnosis. You can also see that the lag time in Maryland is not very different than that in the U.S. as a whole.

If you look at a state in which people have less access to care, such as Louisiana (below), you can see that the lag time for most ASD diagnoses is much longer there than for the U.S.

Though these results are discouraging, exploring the IAN data is a pretty cool way to spend a snowy day.

Find out more about IAN State Stats and how you can participate in the IAN Project.

New Clues to the Earliest Signs of Autism Spectrum Disorders

February 17, 2010 2 comments

In Their Own Words: Welcome to the Community

January 22, 2010 1 comment

“Is your son on the spectrum?”

The question was slightly jarring to me. My son and I had just walked into a gymnastics class for kids with autism. We had received his diagnosis only three weeks before, and we hadn’t shared our news with anyone except for close friends and family. It was the first time we had been anywhere that was just for kids like mine and I wasn’t really ready to talk to a total stranger about it.

“Yes,” I answered, trying to keep the conversation short.

“Hi, and welcome! That’s my son over there, and my name is Sandy. How old is your son? Do you live in town? How long have you known your son was on the spectrum? What was his diagnosis?”

I really didn’t want to answer her. I wasn’t even sure we belonged at this class, and all I wanted to do was pay attention to my son to see how he was responding to the class. I watched the other kids as they came in – six boys and one girl – and my first instinct was that we were in the wrong place. One little boy was crying, another was spinning in circles, and another one was running in all different directions. My son‘s not like that, I thought to myself. This isn’t us.

And then I looked at my Henry. I watched him hold tightly to his one-on-one helper’s hand as they walked on a low balance beam, but he wouldn’t look her in the eye when she talked to him. I watched him try to run away to jump into the comfort of the sensory foam blocks and become so focused on that foam pit that he couldn’t move onto anything else. I listened to him babble while he swayed back and forth on the rings, and saw the terror in his face when the noise level got up too high. The tears welled up in my eyes. We did belong here. This is the right place for him. We had found a safe place for him to exercise and develop his muscles in an environment that understood his special needs. For so long we had avoided the “regular” gym classes, music classes, and playgroups because of his behavior. No one here was giving me the usual disapproving looks we get when we’re out places and Henry starts to act up.

I took a deep breath and turned to the mom.

“Hi! My son Henry was diagnosed with PDD-NOS a few weeks ago. We do live in town. In fact, I’ve seen your son at the preschool that my son attends. How long has your son attended classes here?”

It took everything I had to have that conversation, but it was such a relief. This other mom was reaching out to make a connection – to find someone else who struggles on a daily basis like she does – something I myself had been desperate to do for weeks and months. I was instantly welcomed into a community of people who “get it.” No one batted an eye when Henry buried himself under the foam blocks at the end of class so he didn’t have to leave. I got comforting looks of understanding from all the parents and teachers when he had a major meltdown leaving the gym, and big thumbs up from everyone when we finally got our shoes on and went out the door. These were moms and dads who shared my daily difficulties of just getting out of the house. Finally we were somewhere that felt like we belonged.

“Will we see you next week?” asked the mom.

“Absolutely,” I replied.

This week’s “In Their Own Words,” is written by Alysia Butler of Hopedale, Mass.

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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