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New Technology Enhances Autism Research and Therapy

Wed, 19 Jun 2013 11:39:17 GMT

Gadgets that provide insights into behavior are guiding the development of improved interventions

Posted by Shanise Owens, project manager for Autism Speaks Autism Genetic Resource Exchange (AGRE)

Some pretty amazing little gadgets are bringing new insights into how children respond to therapy and how we can improve our methods to really make a difference in the homes of our families.

One intriguing tool is a sensory wrist band that collects information on a person’s movement, heart rate, temperature and other body responses. Researchers at the Massachusetts Institute of Technology have been using it to follow what’s happening inside a child with autism in the hours and minutes before he or she acts out in a classroom. That’s powerful information that can help guide a teacher in anticipating – or better, avoiding – meltdowns. It also provides insights for behavioral therapists working with a child to better deal with the sensory issues and frustrations that lead to overload.

This is just one of the impressive gadgets I learned about when attending a recent talk – “Computational Behavioral Science: Developing Innovative Technology to Enhance Research and Practice in Autism Spectrum Disorder” – by Matthew Goodwin, the co-director of MIT’s Autism Communication Technology Initiative.

Dr. Goodwin explained the challenges researchers face when studying the effectiveness of behavioral therapies. After all, every individual with autism presents with unique symptoms, strengths and distinct behaviors. His research interests focus ways to overcome these challenges through new technologies. In particular, he’s interested in gathering objective information on changes in behavior related to autism interventions.

Already, his research team has used the sensor wrist band to better understand what triggers challenging classroom behaviors such as self-injury, tantrums, wandering, destructiveness and aggression. The researchers share this information with the children’s teachers and therapists. The payoff: A better learning environment and social experience for everyone.

Candid camera in the home
Dr. Goodwin’s “Speechome Project” involves using a kind of home candid camera in the home to gain insights into how to help non-verbal children with autism build language. MIT engineers developed a sophisticated audio-video recorder that looks like a large hanging lamp. (See image at left.) It captures a panorama of home activity that allows the MIT team to track how nonverbal children with autism communicate their desires in their home environment.

What kind of interactions encourage them to use speech or some form of vocal communication? What interferes?

Already, this study is providing glimpses into the social cues – verbal and nonverbal – that contribute to language development in children with autism.

I came away from Dr. Goodwin’s lecture excited about the potential for technology to improve research in natural environments such as home and school. These studies, in turn, promise to pave the way for new and more effective interventions for children and adults with autism.

Autism Speaks has long had a special interest in harnessing technology to help individuals with autism live more fulfilling lives. Please see this website’s Innovative Technology in Autism page and our Autism Apps page.

In addition, Autism Speaks is currently funding a number of related studies. Here are a few of particular interest:

* Pragmatic language and social-emotional processing in autism, fragile X, and the FMR1 premutation

* Making words meet: Using computerized feedback to facilitate word combinations in children with ASD

* Innovative technology for mapping social engagement in children with autism: Adaptive physiological profiling in real time

* Neural correlates of social exchange and valuation in autism

* Telemetric assessment of movement stereotypy in children with ASD

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Autism Comes to Capitol Hill

Mon, 17 Jun 2013 18:50:00 GMT

Internship program for young adults with disabilities growing 'like wildfire'

Members of Congress and Americans with autism are getting to know each other a little better every day on Capitol Hill.

Through an innovative program launched four years ago by Rep. Gregg Harper (R-MS), interns with developmental disabilities have been placed in Congressional offices to perform staff work while rubbing elbows with the nation's top elected officials. In the process, they are helping change attitudes among key decisionmakers about what people with developmental disabilities can do in the workplace.

The program has proven so successful that House Speaker John Boehner (R-OH) has just brought in two interns with disabilities to work in his personal office and the Majority leadership office, according to Salley Wood, deputy staff director for the Committee on House Administration, which manages the internship program.

Harper (left), whose son Livingston was diagnosed with Fragile X at age 4, started the program after visiting George Mason University's Mason LIFE program shortly after being elected to Congress. Mason LIFE has provided 47 interns who have worked with 66 Congressional offices. About 40 percent of the interns have autism, said Dr. Heidi Graff, the program director.

Wood said participation in the program has been bipartisan and now includes some Senate offices. The interns perform office work, such as collating, copying, mailings and assisting with constituent relations. She credited Mason LIFE with helping get the program off to a strong start and that the House committee wanted to expand the internships to other academic programs nationally.

"It's growing like wildfire," Wood said. "We started with three interns and now we have 12 to 15 each semester. Now you can walk into the Speaker's Office and be greeted by a young woman with a disability."

Wood and Graff said they work together to match the particular skills of interns with the needs of specific Congressional offices. Graff said the interns have proven popular because of their reliability and skills once they master a job. The HSC Foundation is funding stipends for the interns so that they are paid for their work.

Graff said it not uncommon at the start of the internships for Congressional staff to speak with the intern's job coach rather than directly to the intern. The Congressional staffers are advised to speak directly with the intern. Fairly quickly, the interns become a productive part of the office routine and blend in.

"They're getting lost in Rayburn like everyone else," joked Wood.

"We've changed some attitudes on the Hill," Graff said. "Some people had a bias towards people with developmental disabilities. We are gradually working one office at a home, showing what our students are able to do."

Graff and Wood agreed that the most pervasive hurdle was simply a lack of exposure to people with developmental disabilities and awareness of job placement programs.

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Celebrate the Victories

Mon, 17 Jun 2013 12:00:00 GMT

Keri Michaelis shares her sons feat on how he became the 2013 National History Bee Elementary School National Champion!

This guest post is from Keri Michaelis. She is the mother of W. Foster Michaelis, a 11-year-old boy with Aspergers who just earned the title of 2013 National History Bee Elementary School National Champion.

At 14 months, our oldest son, Foster, mastered a shape sorter unlike any other toddler I’ve ever seen. His favorite activity was to sit patiently in my lap for hours while I read book after book to him. He was obsessed with letters and numbers. At 18 months, he started asking which letters spelled certain words and began sight reading. By the age of 2, he began reading books aloud to me. I was thankful to have been blessed with a smart little boy who always seemed hungry to learn more.

Foster was a happy baby; engaged, silly, a great eater and a great sleeper. At seven months we giggled at his first word – “apple.” As a toddler, he was curious, very busy and a good big brother to his baby brother, Luke. He loved to take his toys apart to see how they worked. We knew we had a very curious child on our hands.

After our family moved across the country, Foster reached the height of his frustration and his words simply could not keep up with his brilliant mind. His baby brother required more of my attention and the world Foster had previously known had been completely turned upside down. He did not seem to enjoy playing with other children his age, only older children or adults who could read with him or teach him something new. He was easily upset by changes in his routine.

We met with our new pediatrician and I expressed my disappointment with Foster’s inability to demonstrate flexibility with his daily activities. I was so happy to have a child with such an intense desire to learn, yet my husband and I found it very hard to discipline Foster in a traditional way. No matter what we tried, it seemed that we just couldn’t keep his irregular tantrums under control. I was desperate to help make him a happier toddler. I scoured the internet, unaware of what I was looking for, but determined to discover a label for what my son was going through with no concrete results. I placed my son’s name on the waiting lists of several Atlanta-area developmental pediatricians and clinics and filled out mountains of paperwork in preparation for our visits. And then I waited.

On one August afternoon before our baby turned three, after a battery of tests and questions and exercises, our new developmental pediatrician delivered the definitive diagnosis: “Your son has Asperger syndrome. He will live with this developmental disability for the rest of his life.”

It was gut-wrenching. My sweet blue-eyed baby boy was not a typical toddler - I knew this - but he had a developmental disability? Autistic, seriously? This couldn’t be.

I went through a period of mourning for Foster’s future. I stayed up night after sleepless night worrying whether or not he would ever attend school with typical peers, go to a birthday party, have his first sleepover, experience the joy of a best friend, play on a sports team, have a girlfriend, go to college, enjoy a career, experience marriage, and even become a parent himself.

Then one morning I stopped feeling sorry for my son and for myself. Asperger’s was our new path. He wasn’t going to die from it. Yes, the path ahead was going to be harder than most, but he was still the same sweet, smart kid and he needed me to make some decisions to make his life the absolute best it could be. I wasn’t the first parent of a kid with Asperger’s. There had to be others out there going through what we were going through. Surely something had to have worked for other kids before him. And if not, I was going to figure it out with some help from the professionals. I dried my tears, took my family members up on their offers to help us in many ways, rolled up my sleeves and got to work.

I worked closely with our developmental pediatrician to develop a therapy plan for our son. At one point, he was involved in twelve different therapies a week – from physical therapy to speech therapy to occupational therapy to hippotherapy to social skills therapy. We met so many amazing therapists along the way who challenged me to think in a different way and helped me understand how to help my son live with his Asperger’s. I got frustrated when our insurance company told us these therapies were not covered by insurance because he hadn’t been in a tragic accident - although he was born with autism. I worked tirelessly to educate his teachers, specialists, friends and family members on how to bring out the best in him, take care of him and set him up for success.

Over the years, Foster has worked so hard to understand how to better succeed with Asperger syndrome. People with Asperger’s are characterized by deficits in social interaction and communication. While he has experienced his share of challenges along the way, he has come so far since his initial diagnosis on the autism spectrum. We have celebrated many victories since his diagnosis, both big and small.

I celebrated when he finally got the hang of potty training, which took him a lot longer than most other boys.

I beamed with pride when Foster graduated from our church preschool, where I was originally told they didn’t support children with autism. His teacher even thanked me for allowing him in her classroom because he taught her so much.

I did a happy dance when he finally got the hang of tying his own shoes and writing his name, which came much later than his other friends at school because of challenges with his fine motor skills.

I was joyful when he held his baby sister for the first time and told her that he would always protect her.

I smiled when he scored his first two-pointer on the basketball team with typical peers.

I was elated when he hugged my Dad for the first time without having to be prompted to do so.

I jumped up and down when he mastered the motor skills necessary to ride his bike without training wheels, despite his physical limitations.

I celebrated when his peers elected him Secretary of Student Council in the 4^th grade. He wrote a speech, made posters and the other children voted him into office.

I cheered when he won the Geography Bee for the whole school in 4^th and 5^th grade and went on to the state finals two years in a row, competing against other typical peers through middle school.

I beamed with pride when he returned from his first week of Boy Scout sleep-away camp and the counselors told me how independent he was.

I cried when he captured the title of 2013 National History Bee Elementary School National Champion. During the competition, students were asked to share an interesting fact about themselves. Foster proudly answered, “I have Asperger’s.”

While we still have a long road ahead with middle school, high school and college, I am proud of my son and his accomplishments. Celebrating his victories up until this point in his life has helped inspire me to look ahead to his future, which looks very bright.

If your child is newly diagnosed, have faith and roll up your sleeves. It is not an easy path, but it is possible with early intervention and a clear plan of action to help your child succeed in many ways, big and small. Take your friends and neighbors and family members up on their offers to help out in any way possible. Educate those around you on how to help your child succeed. Get involved in your child’s life. And celebrate the victories along the way.

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15 years of the Celebrity Golf Challenge at Winged Foot

Sun, 16 Jun 2013 15:01:11 GMT

15 years ago a celebrity golf event was our first step of many towards finding answers to the many debilitating aspects of autism.

This is a guest blog post from Kevin Murray, the Winged Foot Celebrity Golf Challenge co-chair.

With his son at the 2012 event.

15 years ago a celebrity golf event was our first step of many towards finding answers to the many debilitating aspects of autism. Why have so many suffered and continue to? What can we do to help now and for tomorrow? Where are our governments in this crisis? We have had the help of so many along the way who have toiled and battled despite incredible personal challenges. We are forever grateful. Because all of you have joined hands progress is being made It would be impossible otherwise. Autism Speaks is by far the best chance we have to change the lives of these cherished children. While we have come an incredible way in science, awareness, education and living options since the first step 15 years ago please know we are in no way complacent. We continue to fight alongside you and always will! Today will be another step in the quest- A celebration at Winged Foot for sure but also an announcement that our commitment is enduring and focused.

Read a recap of the Fifteenth Annual Celebrity Golf Challenge here.

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Celebrating Fathers Recap!

Sun, 16 Jun 2013 13:00:00 GMT

Check out this recap of some great Father's Day content we've received this week!

Happy Father's Day Everyone!

This past week we have been sharing some great content with you all via our blog! Here's some blogs for you to check out....

Happy Father’s Day Autism Dads

I Wish I Knew

Watch Rodney Peete, Former NFL Star and Autism Dad’s, Live Chat

Legends

Lou Melgarejo’s Beautiful Video Tribute to his Daughter Bianca

What I Know About Fatherhood Now That My Son’s on the Spectrum

As an added bonus…

Make sure to check out our "Celebrating Fathers” Facebook Album for some great photos of Dad’s within our community.

Also on our “Community Connections” page this month we are sharing resources from and for Father’s which you should definitely check out!

Happy Father's Day!!!

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What I Know About Fatherhood Now That My Son's on the Spectrum

Sun, 16 Jun 2013 12:00:00 GMT

When I learned we were going to have twins, I knew my journey as a father would be a little different.

This post is by Michael McWatters and was originally posted on the Huffington Post, as 'What I Know About Fatherhood Now That I Have A Son On The Autism Spectrum,' here.

When I learned we were going to have twins, I knew my journey as a father would be a little different. As if to prove the point, our boys arrived ten weeks early and spent over two months in NICU. While there, Martin developed a protein allergy that caused a life-threatening perforation in his intestines. Two weeks after Colin came home, all his systems shut down and I had to revive him with CPR. And there we were, in our apartment, two frightened parents with two tiny babies attached to heart monitors.

Yet this was just the beginning of our medical odyssey: Colin developed a very rare pediatric lung disease, and has spent the majority of his life with an oxygen tube slithering down the back of his shirt and trailing behind him. Then, when he was 2 years old, he was diagnosed with autism.

This last bit -- autism -- has proven to be the most challenging experience of all. It has also proven to be the most rewarding and the most enlightening.

Here are some of the things I've learned about fatherhood now that I have a boy with autism:

Worrying what other people think is a waste of time.
Before becoming a father I worried too much about the opinions of others. Then I went out in public wearing a backpack carrying an oxygen tank attached to my son's nose via a long plastic tube. Add to this picture standard toddler tantrums and autism-fueled verbal outbursts, and suddenly I began to think of myself and my family as a veritable freak show. That feeling lasted a short time, until it dawned on me that this is my life, this is my family, and I'm damn proud of us all. No one has to walk in my shoes, nor I in theirs, so worrying what they think of me -- of us -- is pointless.

My child is more than a diagnosis.
If I told you my son had cancer, you would think of him as a boy with an illness. When it comes to developmental issues, however, there is a tendency to define the child by the condition. So while it's true that Colin has autism, it's not the entirety of his being: there is the boy who loves to clomp around in my shoes and laugh at his feet; there is the boy who loves to give nose kisses and hug the cats and tell us that his favorite letter is Z; and there is the 3-year-old who asks us how to spell the words "elephant" and "yellow," and sees the letters "CUXW" on an electrical box and proclaims, "Sounds likes saxaphone!" These things define Colin just as much, if not more, than his autism.

To continue reading, visit here.

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Lou Melgarejo's Beautiful Video Tribute to his Daughter Bianca

Sat, 15 Jun 2013 12:00:00 GMT

Check out this moving video created by Lou, about his daughter affected by autism.

Lou Melgarejo is a married father of three whose eldest daughter Bianca (7) is autistic. In 2011 he started Lou’s Land, a blog from an Autism Dad’s perspective. A television director by trade, Lou used what he knew to create the autism awareness video “Fixing” Autism for which her received the “Speak Out” award from Autism Speaks for going above and beyond in raising autism awareness to the public through the media. Lou recently released an open letter to his employer, Comcast/NBCU pleading with them to elect meaningful autism healthcare benefits for their self-funded employee health benefits. Lou’s Land is syndicated on Autisable.com and Lou also blogs for Huffington Post. In his spare time, Lou enjoys spending time with his family and filling his house with love and laughter.

He recently participated in our Twitter Chat with Katie Couric which you can find out more about here!

In 2011, Lou Melgarejo won the first ever 'Speak Out Award' for this moving video he created for his daughter Bianca.

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Will the Supreme Court Gene Patent Ruling Affect the Autism Community?

Fri, 14 Jun 2013 19:34:34 GMT

Perspective from Dan Smith, Autism Speaks senior director for discovery science.

Posted by Dan Smith, PhD, Autism Speaks senior director for discovery science

On Thursday, the U.S. Supreme Court ruled that simply isolating a human gene does not give an individual, company or organization the right to patent its use. This is a ruling that most researchers and clinicians welcome.

The crux for us is that prior to this ruling, companies held exclusive rights to many genes associated with specific diseases. This included a growing number of autism-related genes. Being able to test for these genes is important for guiding diagnosis and treatment.

But if a company wanted to put together a diagnostic panel of autism genes, it would have to seek permission and pay licensing fees to each company owning one of those genes. This slowed down development and raised the price of gene testing. It also had the potential to slow and increase the cost of important research into the causes and treatment of autism.

However, the Supreme Court also ruled that a company could hold a patent to a type of synthetic gene called complementary DNA, or c-DNA. Many gene tests use this modified form of DNA. So the effect of the Supreme Court ruling remains less than clear cut.

In addition, while the Supreme Court ruling may reduce costs for existing diagnostic gene tests, it may reduce the incentive for companies to develop new gene tests. They may find themselves facing a less certain return on their research investment

As many of you know, Autism Speaks has taken a leading role in the discovery of genetic risk factors for autism. This includes our ground-breaking collaboration with BGI to sequence the complete genomes of 10,000 individuals with autism. We are doing so to better understand the genetic causes of autism and help guide research and treatment. We want you to know that we do not seek to patent or limit the use of these findings. Our sole purpose is to develop a database that will serve researchers, physicians and the entire autism community.

Read more about Autism Speaks Genetics and Genomics programs here.

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Can exercise improve behavior? Help encouraging a child who has autism

Fri, 14 Jun 2013 13:51:25 GMT

Practical advice from Daniel Coury, MD, medical director of Autism Speaks Autism Treatment Network

“Can exercise improve our son’s autism-related problem behaviors? What can we do to increase his activity?”

This week’s “Got Questions?” answer is from by Daniel Coury, MD, medical director of Autism Speaks Autism Treatment Network (AS-ATN) and a developmental-behavioral pediatrician with Nationwide Children’s Hospital, in Columbus, Ohio. Nationwide Children’s Hospital is one of 17 AS-ATN centers across the United States and Canada.

Parents know of the health benefits of exercise. It promotes healthy weight and strong bones, reduces stress and improves cardiovascular function. Less familiar are exercise’s mental health and behavioral benefits.

Consider what the body is doing when exercising: The heart beats faster, circulating more blood through the body, including the brain. You breathe faster and deeper, increasing oxygen to your brain as well as your muscles. Finally, exercise increases the release of several brain chemicals called neurotransmitters. These include endorphins and dopamine, which affect our brain’s functioning. Clearly, exercise can help the entire body, including the brain, function at its best.

Does this have any measurable benefit for individuals with autism and other neurodevelopmental disorders? Definitely. Several studies have looked at the effects of exercise in children and adults with attention deficit hyperactivity disorder (ADHD). They show clear evidence that exercise improves attention, concentration and organizational skills. All are problems for individuals with ADHD.

Encouraging research
One study found clear improvements in these areas after just 30 minutes of aerobic exercise. Another study showed improved behavior, thinking skills and school performance after 20 minutes of exercise in children with or without ADHD. In the second study, the children with ADHD also showed improved self-control and decreased impulsive behavior.

Certainly, improvements in attention, concentration and self-control would help individuals with autism spectrum disorder (ASD). And we have good evidence that exercise can provide similar benefits for children and adults on the spectrum.

In particular, studies have shown that exercise reduces problem behaviors such as repetitive behaviors, off-task behavior, mouthing, self-injury, disruptiveness and aggression in those with autism. We see these benefits last for several hours during and after exercise. These benefits can even produce a kind of positive feedback, making it easier for parents and therapists to encourage exercise.

Encouraging exercise in those with autism
So how can parents encourage their children – or any loved one with autism – to exercise daily?

First, it’s important to consider your child’s preferences. Does he prefer jogging, riding a bike, swimming? Tapping into enjoyment and preferences is an important first step to motivation.

While many people exercise for the sake of a goal such as losing weight, many individuals with autism need more immediate reinforcement. Your child may simply enjoy running or swimming. However, you may need to offer some additional motivation. If so, I suggest a little “pay to play,” as in holding off time at the computer or television until after the day’s exercise.

Finally, it will probably help if you join your child in the exercise activity. This way you provide a role model while he learns a new activity. The simple truth is that you’re almost certain to benefit from the daily exercise as well. So I encourage you to review your family’s daily schedule and set aside 30 minutes a day for shared exercise. You have nothing to lose (but maybe extra weight) … and a lot to gain.

Editor’s notes:

* Autism Speaks Autism Treatment Network is a collaboration of medical centers dedicated to providing families with state of the art, multidisciplinary care. The AS-ATN was established to provide a place for families to go for high quality, coordinated medical care for children and adolescents with autism and associated conditions.

* Dr. Coury will be one of several featured speakers at this year's Autism Speaks National Conference for Families and Professionals. Read more about this year's conference in this blog by Clara Lanjonchere, Ph.D., Autism Speaks vice president for clinical programs.

* Autism Speaks is currently funding a number of research and family service projects related to the benefits of exercise. Explore these studies and more using this website’s Grant Search. Also see our Family Services portal to “Health and Fitness.”

Got more questions? Send them to GotQuestions@autismspeaks.org. Subscribe to Autism Speaks Science Digest to get “Got Questions?” blogs and all our research news and perspective delivered to your inbox.

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I Wish I Knew

Fri, 14 Jun 2013 12:00:00 GMT

Michael Rosen shares a great post about his 25-year-old nonverbal son for Father's Day.

This guest post is from Michael Rosen, Executive Vice President of Strategic Communications at Autism Speaks.

On this fathers day I am thinking a lot about my 25 year old nonverbal son.

I think by now I understand him better than perhaps anyone. Still, there are so many things I wish I knew…

What it is that he most wants to say when he phones three times a day?

What is it that he’s trying to say when he looks at me and opens his mouth without words coming out?

Why does he want to listen to Raffi day after day?

And why does Michael Jackson get him dancing in the car?

Why is it that some days he can’t stop staring at me and nodding while I talk to him, while on others he keeps his finger in his ear and won’t look my way?

Why is it that he can so easily nod to say yes, but can’t learn to shake his head to say no and instead gives a push?

How does he so quickly pick up on who loves him and who is uncomfortable when he’s around?

Why do certain family photos transfix him in such an obsessive way?

Will he ever again say the word Dad that he said one day in a hospital bed?

And was his only spoken word by accident or design?

Why is it that sometimes he tries to hold back that huge smile when I show up for our date?

And why does just one smile from my Nicky so make my heart soar?

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