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Archive for March, 2011

Catching Up with Dr. Ricki Robinson

March 28, 2011 4 comments

We were so excited with the chance to sit down and have a chat with Dr. Ricki Robinson, author of Autism Solutions: How to Create a Healthy and Meaningful Life for Your Child. Dr. Robinson is co-director of Descanso Medical Center for Development and Learning in La Canada, California.  She is a Clinical Professor of Pediatrics at the Keck School Medicine of USC and Senior Attending Physician at Childrens Hospital Los Angeles.  She has been in private pediatric practice for over 30 years, specializing in children with developmental delays for over twenty years.

Autism Speaks: Dr. Ricki thanks so much for giving us a chance to catch up for an interview! How did you start your career in autism?
Dr. Ricki Robinson: I was a practicing pediatrician for 20 years before I met my first patient with autism. There was so little out there and something had to be done. This group was so medically needy and the medical institution wasn’t paying attention. So I thought ‘who can I pull in to get these people help?’

AS: What is a common myth about people with autism?
DR: One of the biggest myths is that kids with autism have no empathy. That is so false! These people have more empathy because they know how hard it is.

AS: What advice would you give parents that just received a diagnosis of autism for their child?
DR: First, get to know your child. The key to autism is that yes, it is a label, BUT that doesn’t say who your child is! We can get a very specific treatment plan based on your own child’s needs. Get to know your child. Without a relationship, we can’t grow and develop the right treatment plan.

AS: Is there a specific treatment you favor?
DR: The key to treatment, is to pull the right treatment off the shelf at the right time. Think of it like a library, and every book is a treatment. You have to be dynamic, flexible, and observant. Ask yourself, ‘Have I matched the program with my child’s needs?’ Keep tweaking!

AS: How do you guide the siblings of individuals with autism?
DR: I ask what was the hardest thing you ever had to learn? Let’s say it was a cartwheel. I say, ‘You know how hard you worked, how you were in tears and frustrated while trying to figure it out? Well that’s how your sibling feels when they have to perform a ‘mundane’ task. Your sibling has to work that much harder. Autism doesn’t mean that they can’t accomplish things, it just means they have to work harder.

Be a partner, not a boss. If it okay to get mad. Siblings need to be siblings.

Don’t be afraid to have your own dreams and your own life. You need to be there for your siblings, but in order to do that in the best way possible, you need to be there for yourself.

AS: The ‘system’ can be very complicated. Any tips on navigating through it?
DR: Families and children must understand how to be your own best advocate. That starts with knowledge and understanding. Once you figure what your rights and needs are, you can get things accomplished.

AS: What is one thought you can leave with us until the next time we catch up?
DR: Children with autism, are children first.

Autism in the News – 03.28.11

A chance to raise awareness of autism (Brighton Pittsford Post)
This is an open letter to all homeowners and business owners. April is Autism Awareness Month. To start the month off, Autism Speaks will celebrate the second annual Light it Up Blue (for autism) Campaign. To celebrate World Autism Awareness Day, more than 500 buildings and landmarks will be shining blue in support, in more than 125 cities in 25 countries. Read more.

Create Autistic Child’s Theory of Relativity (Business Area)
Child Autism 12-year-old makes a scene in the world ofeducation. The reason is, this kid has an IQ higher than Einstein. In fact, hedeveloped his own theory of relativity. Read more.

Camp Pa-Qua-Tuck Reminds Everyone That April is Autism Awareness Month (Center Moriches, N.Y.)
Camp Pa-Qua-Tuck is reminding everyone that April is Autism Awareness Month. The camp is also having its Open House on April 2, which is World Autism Day. Read more.

Autistic teenagers get vocational training to make them employable (Dubai)
For the first time, teenagers enrolled at the Dubai Autism Centre have been offered the opportunity to undergo vocational training that enables them to be more independent and self-reliant. Read more.

Four films for autism families are ‘sensory friendly’ (The Ridgefield Press)
The Ridgefield Playhouse will support April Autism Awareness Month with “movievents” April 3, 10, 17 and 23. Read more.

Autistic Individual Speaks to Senator Robert Menendez about Autism Reform

March 28, 2011 4 comments

This guest post is by Autism Speaks staffer Kerry Magro. Kerry, an adult who has autism, is a rising senior at Seton Hall University, majoring in Sports Management. He started the club Student Disability Awareness on campus to help spread awareness and raise funds for those affected by autism. Autism Speaks U is a program designed for college students who host awareness, advocacy and fundraising events, while supporting their local autism communities.

Kerry Magro and Senator Robert Menendez

I’ve had several surreal moments that have happened in my life. One of them happened last week when I got to spend the day at the Capitol in Washington DC speaking to New Jersey Senator Robert Menendez about several autism related topics. As someone on the spectrum, I have been advocating for Autism Rights for the past several years by sharing my experiences along with doing consulting work for families with individuals on the spectrum. This however was a new test for me as this was the first time I was speaking to a U.S. Senator. To say I was nervous would have been an understatement.

When I arrived to his office in Washington, Senator Menendez let me in with open arms. Senator Menendez   is considered by many people, “The Champion of Autism” because of his close work with Autism Reform in regards to his recent sponsorship of the Combating Autism Reauthorization Act (CARA), he helped establish in December of last year, with former Connecticut Senator Christopher Dodd. Overall, he came over as warm and very caring about the needs of awareness of autism in not only New Jersey, but throughout the United States. I was very impressed as at the end of our conversation he was able to quote a majority of one of my recent blogs I did for Autism Speaks found here.

Some of the main discussion items we discussed were:

  • The Light it Up Blue Campaign-> Autism Speaks is currently doing a campaign to try and encourage The White House to be lit up blue for April 1st and 2nd in celebration of World Autism Awareness Day. We discussed this item and also how we can get prominent buildings in New Jersey lit up blue (we are still on talks about this item).
  • New Autism Reform Acts-> when we can expect a new Reauthorization Act (such as CARA) and what will it look like.
  • What impact will the financial constraints being felt around the country have on full funding of (CARA), and the importance of  hearing from the Autism community to have Congress make it a priority
  • How can Autistic individuals get more involved in Autism Related Topics (Groups such as Advancing Futures for Adults with Autism)?

The main goal for me from this meeting was to just get the opportunity to start a dialogue. As most of us are aware, a great deal of Autism litigation and reform is a tedious process. One thing that Senator Menendez mentioned which I found very interesting was, “It’s difficult sometimes to spread awareness of Autism and get funds pushed towards Autism when many individuals on the spectrum can’t relay the importance of why it’s needed”. We both understood how unfortunately even though this may not be fair it’s a reality. That’s why hearing from other autistic individuals, especially those that are verbal becomes vital because even though some people can see how some with autism act  and behave, it’s something entirely different to understand what they are experiencing and feeling on the inside.

This was a bit of an eye opener as it makes me understand the importance of continuing to get the word out and understand that Autism needs to speak sometimes in order to make people aware of  its need. I would like to thank Senator Menendez officially on this blog for giving me the opportunity to speak to him as it has made me better  advance my understanding of The Disability Movement going on right now and what I can do to self-advocate.

I hope the journey to Washington was the first of many and that I will be able to continue the dialog with Senator Menendez in the months and years to come.  What an amazing individual!

5 Days Left Until Light It Up Blue

March 27, 2011 6 comments

The countdown is on to April 1st! World Autism Awareness Month is in reach and we are so excited to Light It Up Blue! Every day, leading up to the big day we’ll post highlights, a special interview and much more!


Who’s Lighting It Up Blue?

More than 500 buildings and communities are lighting it up blue! Christ the Redeemer in Rio de Janeiro, Brazil. Christ the Redeemer is considered the 2nd largest art deco statue and is among the New Seven Wonders of the World.
 

Visit www.lightitupblue.org to get pledge your support and get involved!

 


Community Spotlight 

Today’s virtual interview is with Vicki D. from Nebraska. 

Autism Speaks: What are you Lighting Up Blue?
Vicki D.:
The Nebraska State Capitol Building

AS: Why is this campaign important to you?
VD: My son has autism and I knew when he was diagnosed that I had to be his voice.  I want to help give awareness to the public that people with autism want the same as everyone; to have friends, to be included and have respect.

AS: Getting the State Capitol to light up is a huge accomplishment! How did you do it?
VD: I wrote the Governor of Nebraska and sent information about Light It Up Blue.  I asked him to not only do it for my son but for everyone in Nebraska touched by autism.

AS: What other buildings would you like to see lit up?
VD: The White House.

Are you lighting up blue too? Take this quick and easy survey to tell us how!

 

Dr. Geri Dawson Gives Us an Update!

In this blog post, Dr. Geri Dawson shares how the University of North Carolina will be celebrating World Autism Awareness Day. Several scientists at the University of North Carolina are currently conducting Autism Speaks-funded research on topics ranging from infant screening to animal models to clinical trials that are assessing new behavioral and medical treatments.

6 Days Left Until Light It Up Blue

March 26, 2011 7 comments

The countdown is on to April 1st! World Autism Awareness Month is in reach and we are so excited to Light It Up Blue! Every day, leading up to the big day we’ll post highlights, a special interview and much more!


Who’s Lighting It Up Blue?

More than 500 buildings and communities are lighting it up blue! Niagara Falls will be lighting up blue again!
 

Visit www.lightitupblue.org to get pledge your support and get involved!

 

 


Community Spotlight 

Today’s virtual interview is with Janelle V. from Bloomington, Ind. 

Autism Speaks: What are you Lighting Up Blue?
Janelle V.:
We are lighting our chapter house blue to show Alpha Xi Delta’s support for World Autism Awareness Day to the rest of the greek community near by! We will be passing out blue ribbons leading up to this day and want the community to help us recognize World Autism Awareness Day.

AS: How are you going to light your chapter house blue?
JV: We will be placing blue spot lights in our front lawn and lighting up the front of the house!

AS: What would you like to see lit up next year?
JV: We would love to see buildings in downtown Bloomington lit up!

Are you lighting up blue too? Take this quick and easy survey to tell us how!

 

Blue Website Builder of the Day

Tara Currence is our Blue Website Builder of the Day! Check out her page! She has built this website for her son, Jack, who has been diagnosed with autism. She has already surpassed her fundraising goal! 

You can build a Blue website too! Just visit this link and get started!

Take the Pledge to go blue and help us shine a light on autism!

A Toy Story: Toddler Treatment Network finds an effective treatment strategy for some young children with ASD

March 25, 2011 10 comments

It is now possible to screen for autism spectrum disorder in toddlers as young as 18 months of age and ways of screening even earlier are being tested.  When a parent learns that their young son or daughter is showing symptoms of autism,  it is important that they be offered intervention strategies that can help their toddler at risk for ASD have the most positive outcome.  To address this need, in the summer of 2006, Autism Speaks began an initiative to support research on early intervention targeting toddlers with autism spectrum disorder (ASD) from 18-24 months of age.  There are many questions that need to be addressed:  Who should deliver the intervention?  How many hours are required? What strategies should be used?  Are these strategies effective?  Research funded by  Autism Speaks is addressing these questions.

At the time the initiative was started, many clinicians were already referring children to birth to three  services in their communities and developing their own programs using techniques that could improve communication, social behavior, and language in toddlers. However, very few randomized clinical trials – the gold standard for determining whether a treatment is really effective – had been performed in toddlers with ASD. Of the randomized clinical trials that did exist for this young age, the number of children participating was low, so it was not clear how well the results would generalize to other children.

To solve this problem, Autism Speaks  provided resources to clinicians and researchers who were working with children with ASD as young as 18 months of age to determine what types of interventions were effective, what made them beneficial, and how symptoms improved over time. As a result, 7 projects involving multiple sites around the US and Canada began in 2007 and the Toddler Treatment Network was born.

Each project is unique in the type and style of the intervention, but all the projects shared a common link: they all included parent training for delivery of interventions at home. This model is attractive because parents or other caregivers are able to deliver the intervention through the day in familiar settings. This model offered more time in intervention and wascost-effective.  Members of the Toddler Treatment Network came together to share ideas, best practices, and a plan to combine their data at the end of their studies.  As a result, over 250 toddlers have been recruited to participate in these studies, and a meta-analysis combining data from all studies will be completed in 2012.  Full descriptions of the projects can be found here:  http://www.autismspeaks.org/science/research/initiatives/toddler_treatment_network.php

Recently, one of these research groups published their first set of findings in the Journal of Child Psychology and Psychiatry.  At study sites in Miami, Boston and Tennessee,  children with ASD were enrolled in the Hanen More than Words program, which is focused on developing language and communication skills in toddlers.  The comparison group of children with ASD were enrolled in local early intervention programs, support groups, and other behavioral interventions.  Children and parents were assessed at the beginning of the study, during the study, and 4 months after the intervention ended.

At the beginning of the study, a number of behaviors were examined, including the number of toys or objects a child played with. While the Hanen intervention was not effective for all children, it was particularly effective for children who did not play with many toys before the program started.

Why?  The researchers speculate that during the intervention the toddlers who were less object- focused may have been more easily engaged with their parents during the intervention and thus spent more time learning appropriate responses.  These results suggest that as toddler interventions are developed it will be important to understand which kids are most likely to benefit from each type of intervention.

This study adds to the body of evidence showing that early intervention in autism can lead to meaningful improvements in social, behavioral, and communication outcomes.  However, one type of intervention strategy is not going to work for all children affected with ASD.

With this in mind, studies that are part of the Toddler Treatment Network focus on different programs and different methods for promoting development.  A higher-intensity program may be needed in some children.   For other children, however, the Hanen style of intervention strategy, which allowed parents to deliver the intervention in different settings, resulted in significant improvement in outcome compared to traditional methods.

Wendy Stone, Ph.D., study co-author and director of the University of Washington Autism Center described what she saw as a successful result of early intervention for autism:  “Our ultimate goal is to catch the symptoms early and find effective preventive interventions so that these children can attain their full potential.”  Autism Speaks is looking forward to the findings from all these studies, and will keep you updated when they are published.

UNC to Light It Up Blue

March 25, 2011 1 comment

By Geri Dawson, Ph.D., Chief Science Officer, Autism Speaks, and Research Professor of Psychiatry at UNC Chapel Hill.

 

UNC employees team up in blue for autism awareness: Autism researchers, clinicians, and hospital staff posed to show their support of World Autism Awareness

One out of 110 school-age children in the US is diagnosed with an autism spectrum disorder (ASD).  Given these numbers, it is likely that you know someone who is affected by autism.  Please join me and thousands of others around the world in shining a bright blue light on autism by wearing blue on April 1st and 2nd.  This is one way you can show your support and increase awareness of autism.

People with ASD have difficulties in social interaction and communication and tend to have restricted interests and repetitive behaviors.  Autism is not one condition; rather, it is many conditions with many different causes, which include both genetic and environmental risk factors. When autism is identified at an early age and appropriate early intervention is provided, children with autism can make substantial gains and learn to communicate and interact socially.  With appropriate intervention, many children with autism are able to attend a regular classroom, learn to speak, and develop friendships. ASD affects each person differently.  Some individuals are highly verbal and experience mostly social challenges, while others are nonverbal and unable to live independently. Some people are affected by medical conditions such as seizures or sleep disorders.  Although most people think about autism as a condition affecting children, the challenges are typically life-long.  A half-million adolescents with ASD will be entering adulthood over the next few years.

New research on the biology of autism is pointing toward novel treatments, including medications that could help address the core symptoms of ASD. Each year, Autism Speaks provides $25-30 million in research funding to discover autism’s causes and effective interventions (www.autismspeaks.org).  In fact, several scientists at the University of North Carolina are currently conducting Autism Speaks-funded research on topics ranging from infant screening to animal models to clinical trials that are assessing new behavioral and medical treatments. This research offers hope for the many families struggling with autism in all of its forms.

The diversity of the presentation of ASD is just a part of the awareness we hope to raise this year on World Autism Awareness Day by shining a light on autism.  We want more people to appreciate the lives of those living with autism, both in terms of the daily challenges and the celebrations of special abilities and milestones achieved.

Saturday, April 2nd is World Autism Awareness Day, dedicated in 2007 by the United Nations to raise awareness about autism throughout society and to encourage early diagnosis and early intervention.  On Friday April 1st and Saturday April 2nd, we will light the world up blue to raise awareness and show support. Landmark buildings, hospitals and schools around the world will change their lighting to blue. Please join us at work and at your home by wearing blue, changing your porch light and hanging a sign to show your support. For more information on how you can light it up blue, please go to www.lightitupblue.org.

Only a Week Until Light It Up Blue

March 25, 2011 2 comments

The countdown is on to April 1st! World Autism Awareness Month is in reach and we are so excited to Light It Up Blue! Every day, leading up to the big day we’ll post highlights, a special interview and much more!

Light the White House Blue

Today Laura Shumaker writes this letter asking President Obama to turn the White House blue! She asks that The White House is lit for her son Matthew, who wants so desperately to be ‘a regular guy.’

Who’s Lighting It Up Blue?

More than 500 buildings and communities are lighting it up blue! The Rock and Roll Hall of Fame in Cleveland, Ohio has signed on to Light It Up Blue! The Rock and Roll Hall of Fame and Museum, Inc. is the nonprofit organization that exists to educate visitors, fans and scholars from around the world about the history and continuing significance of rock and roll music. 

Visit www.lightitupblue.org to get pledge your support and get involved!

 

 

Community Spotlight

Today’s virtual interview is with Jennifer R. from Dothan, Al. 

Autism Speaks: What are you Lighting Up Blue?
Jennifer R.:
The Burger King in Dothan, Alabama where I work.

AS: Why was the ‘Light It Up Blue’ campaign important to you?
JR
: I feel so lucky that my place of employment is so supportive of my son’s condition.

AS: How did you get Burger King on board?
JR: We are displaying blue lights! I went through my manager who talked to our district manager about making this happen! Next year I hope even more buildings in Dothan sign on.

Are you lighting up blue too? Take this quick and easy survey to tell us how!

Check Out These Amazing Photos

Have you downloaded the new ‘Light It Up Blue‘ App on iTunes? You can participate virtually by taking photos and lighting them with 5 different frames! They are then added to the Official Light It Up Blue Photostream!

Take the Pledge to go blue and help us shine a light on autism!

An Afternoon at the Mattress Warehouse

March 25, 2011 5 comments

Mattress Warehouse, Serta, and Autism Speaks have joined together in the fight against autism! For every Serta Naturale Comfort Autism Speaks mattress sold from now until December 31, 2011, SleepHappens.com will donate $100 to Autism Speaks! For more information, please visit here!


This is a guest blog post by Miranda Gibbons, who has a brother with autism.  She is a student at Georgetown University in Washington D.C. She kindly stopped into the Mattress Warehouse store in Bethesda to learn about their new promotion for Autism Speaks.  She spoke with Carlos Sotelo, the store manager.

Miranda:  My brother has autism and I wanted to stop into the store and ask about your new Autism Speaks Serta mattress.
Carlos:  Yes, it comes in a soft top and a firm top style.  It’s a great product, comparable to much more highly-priced mattresses you see on the floor here.

M:  Have you ever done anything like this before?
C: Yes, once before we did a Serta breast cancer awareness mattress and it did very, very well.

M:  Do you know anyone with autism?
C:  No.

M:  What do you think of this promotion?
C:  I think it’s a great promotion.  It’s a beautiful mattress and it’s a great value.

M:  How does this promotion help people with autism?
C:  It makes people more aware of the seriousness of the problem.  I wear the pin on my suit jacket every day.  And it raises money for research.   From now until the end of the year we will donate $100 to Autism Speaks for every mattress purchased.

M:  Okay, great.  I am going to come back with my mom and buy a new mattress when I move out of the dorm in June.  When I buy the mattress, can I get one of those stuffed-animal Serta sheep?
C:  Absolutely.  I will make that happen.

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Are you a college student interested in getting involved? Check out Autism Speaks U -it could be just the thing for you! Autism Speaks U is a program designed to engage college students across the country in autism awareness, advocacy and fundraising efforts. Its new website offers a wide range of tools to empower students to establish Autism Speaks U chapters, organize events, and encourage their peers to get involved. College students, faculty and alumni can get involved with Autism Speaks U by visiting www.autismspeaks.org/u.

Autism in the News – 03.25.11

March 25, 2011 1 comment

Kate Winslet to raise autism awareness in new book (CBS News)
Oscar-winning actress Kate Winslet is shining a light on autism by publishing a book. Winslet’s book, titled “The Golden Hat,” will come out in November, Simon & Schuster announced Thursday. Read more.

Autism talks raise awareness, hope (The Rocky Mountain Collegian)
Professor Temple Grandin said that autistic kids need to be pushed in order to succeed.“Now, you don’t push to panic –– no surprises,” the world-renowned expert on the subject explained to a small group of individuals speaking with her after she presented to around 100 university students and Fort Collins residents on the disability. Read more.

Dangerous Wandering a Lesser Known Side of Autism (HealthDay)
Many parents know that heart-stopping feeling of being at the park or the mall, and suddenly losing track of their child. For the parents of autistic children, those concerns can be even more intense. Read more.

Autism Awareness Day recognized April 2 (The Inquirer and Mirror)
April 2 marks the fourth annual World Autism Awareness Day, as designated by the United Nations, which speaks to the worldwide growing concern of the autism epidemic. There are only two other health-related United Nations World Day events: for diabetes and AIDS. April is also National Autism Awareness Month. Read more.

Families, staff vow to fight (JC Floridan)
A new weariness and worry has settled over the features of Elizabeth and John Greer, as they fight the possible privatization of Sunland. Their developmentally disabled son has lived, worked and learned there for the past 10 years. Read more.

CBU going blue to battle autism (Your Midtown)
Mid-South residents are invited to view an historic first for Christian Brothers University. The University is joining the global community for “Light it up Blue” in honor of the 4th annual United Nations-snactioned World Autism Awareness day. Christian Brothers University’s Recognizable bell tower on East Parkway will be lit blue on Friday and Saturday, April 1 and 2. Read more.


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