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Archive for March, 2011

International Brain Banking

March 29, 2011 1 comment

We still know very little about the human brain.  With an estimated 100 billion neurons (nerve cells) in the human brain, scientists grapple to understand what these neurons do, how they interact with one another and how they make us who we are.  It is therefore not surprising that we are still some way from fully understanding the human brain, and more significantly the autistic brain and why its development is altered.  There are many scientific approaches that can be used to visually inspect the human brain, such as magnetic resonance imaging (MRI), but only one way of directly studying the human brain – and that is by looking at post-mortem brain tissue.  For this very reason, brain tissue is a critical element in the process of neurological scientific discovery.  Unfortunately, tissue donation remains rare, hindering the very research that will help us to understand autism.

The Autism Tissue Program (ATP), a Scientific Program of Autism Speaks, is dedicated to supporting scientists worldwide in their efforts to understand autism, autism related disorders and the human brain.  The ATP is a tissue based repository (bio-bank), among only a few worldwide, that makes brain tissue available to qualified scientists in order to advance autism research.

In an effort to improve the worldwide availability of tissue-based resources in autism research, Autism Speaks has been seeking to expand its efforts by establishing sister programs in other countries.  In 2009, Autism Speaks partnered with UK charity Autistica in creating a 2nd bio-repository based at the University of Oxford in the United Kingdom (UK). There are already 15 brains that have been donated to this tissue bank and, in addition, awareness of the importance of brain donation for autism research within the British autism stakeholder community and general public has increased enormously.

The Medical Research Council (MRC) – the UK’s equivalent of the NIH – has recently formed a network of UK brain banks, including the Oxford autism bank as a key member. This new infrastructure will be a vehicle for facilitating the awareness of the need for autism tissue collection as well as the donation of tissue from controls (individuals who have no underlying neurological or psychiatric disorder) and related neurodevelopmental disorders (e.g. Fragile X syndrome). By encouraging international collaboration and the establishment of a bio-bank network, we can increase the numbers of donations of this precious resource and build the capacity needed for research in this field.

Autism Speaks’ staff recently visited the brain bank in the Netherlands to explore new collaborative opportunities. Due to their geographical size and national organization, the Netherlands have a unique resource in that all brain donations are sent to a single bank based in Amsterdam.  This streamlined system enables a higher rate of tissue donations and the administration is relatively straight forward.  With the support of the Dutch autism research community and our partners at the Netherlands Autism Society we are hoping that the Netherlands Brain Bank could soon begin collecting  autism tissue. Similar opportunities are also being explored in Sweden and Canada.

We are making great strides in scientific discovery and the last few years have seen significant advances in the genetics of autism.  More than ever this highlights the importance of using autism tissue collections to explore how genetic differences in people with autism affect the cellular and molecular development of the brain.  In turn, these research investments will guide the development of new pharmacological treatments for people with autism to alleviate some of the core and secondary symptoms. With more than 100 research publications resulting from the efforts of Autism Speaks, The Autism Tissue Program, Autistica, and most significantly the brains generously donated by families, we are off to a promising start.

To learn more about brain donation please visit the ATP at www.autismspeaks.org (1-877-333-0999) and UK Brain Bank for Autism & Related Developmental Research at www.brainbankforautism.org.uk (44 0800 089 0707).

The National Concert Hall - Dublin, Ireland

 

Join Us For a LIVE Facebook Chat with Dr. Ricki Robinson

Join us on April 5th at 3pm EST to have a live chat with Dr. Ricki Robinson! Dr. Robinson will be at the Autism Speaks headquarters answering questions. All you have to do is head over to the Autism Speaks Facebook Page and join the conversation!

For a little background on Dr. Ricki Robinson and her new book Autism Solutions: How to Create a Healthy and Meaningful Life for Your Child, check out our interview here.

Autism in the News – 03.29.11

March 29, 2011 1 comment

Light It Up BLUE for autism awareness April 1st & 2nd (Living Lake County)
On the evenings of April 1 and 2, 2011, prominent buildings across North America and the world — including the Empire State Building in New York City and the CN Tower in Toronto, Canada — will turn their lights blue to raise awareness for autism and to commemorate World Autism Awareness Day on Saturday, April 2. Read more.

Mother sets out to buy iPads for other autistic children (Times Reporter)
Tara Oathout couldn’t believe it. Her son, Grady Oathout, who will turn 4 in August, was asking for fruit after just getting back to grandma’s house after lunch at a restaurant, where he had eaten more than anybody at the table. Read more.

For those with autism, documentary offers new hope (Montpelier, Vt.)
A new documentary about autism is making unlikely stars out of two Vermont men who don’t speak much but still have a lot to say. Read more.

McDonnell seeks to amend bill providing insurance for autistic children (The Washington Post)
Virginia Gov. Bob Mc­Don­nell will propose a series of amendments to a bill that would require businesses to provide insurance coverage for children with autism, according to several legislators with knowledge of the changes. Read more.

Quake looter says police beat him (New Zealand)
Police have been accused of assaulting an autistic man who looted an Addington home after the February 22 earthquake. Read more.

Wind gust blamed for fatal SD capsize (San Diego, Calif.)
A sailing accident in San Diego Bay that killed the uncle and grandfather of a special needs child on a charity boat trip was caused by a gust of wind that caught the jib, the only sail that was raised at the time, the president of the charity’s board said Tuesday. Read more.

 

Australia to Light It Up Blue

We are so excited to share with you all what is going on ‘Down Under’ for Light It Up Blue and World Autism Awareness Month. Nicole Rogerson, a Director at Autism Awareness, has said, “It’s all about awareness. It is amazing to add Australia to this great global campaign.” Autism Awareness is an Australian-based not-for-profit organization, which was founded in February 2007. Since then, it has grown into the Australia’s largest autism education and advocacy organization, dedicated to increasing awareness and understanding of Autism Spectrum Disorders (ASD) in the community. For more information, please visit here.

Banners Hung Around Sydney, Australia

Autism Awareness will be running two events for World Autism Awareness day. They will be hosting a reception to see the Sydney Opera House light up blue! People are encouraged to head down to Sydney’s Harbor and join in the festivities and celebrate World Autism Awareness Day. Check out these banners that have been hung all around Sydney!

For those who can’t attend but who would like to be part of it all, they can go to the Autism Awareness website and light their own virtual light bulb. Head over and light your own bulb!

Autism Awareness will be hosting Australia’s first ever National Autism Summit on April 1st, where 30 of Australia’s leading experts in autism research, medicine, education, and public policy will develop a united action plan for autism in Australia.

Visit Autism Awareness on Facebook and Twitter to get information and updates regularly!

Check out this commercial that has been airing on Australian television. It has generated a lot of interest and discussion throughout the country.

 

 

 

4 Days Left Until Light It Up Blue

March 28, 2011 15 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!

White House, Light It Up Blue!

Amy Gravino, self-advocate, writer, and Asperger’s Syndrome College Coach, wrote this letter to President Obama urging him to light The White House blue.Please leave your comments on the blog, time is running out!


Who’s Lighting It Up Blue?

Prudential Joyce Realty is spearheading a month long community initiative with the dual goals of increasing  autism awareness and raising money for Autism Speaks in Rockland County. Autism touches many Rockland County families, including several real estate agents at Prudential Joyce.  Nationally, 1 in 110 children are diagnosed with autism.The campaign began in Pearl River, where at least 25 local stores have very generously agreed to donate up to 5% of their net monthly proceeds to the Light It Blue Rockland campaign. We hope the interest continues to increase and that this Light It Blue Rockland campaign will grow exponentially.The Light It Up Blue Rockland website will list all the sponsors and any events planned during the month.  The town of Orangetown has agreed to put a blue chalk line down on Central Avenue for our April 1st kickoff. 

For more information, like their Facebook Fan Page!

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

 

 


Community Spotlight 

Today’s virtual interview is with Shawna H. from Bolingbrook Ill.

Autism Speaks: What are you Lighting Up Blue?
Shawna H.:
We are lighting up Schoenherr Avenue.

AS: Why are you lighting up Schoenherr Avenue?
SH: My son has a chromozonal deletion and was diagnosed with PDD-NOS and is on the autism spectrum. it is important that my neighbor and community understand about autism and show love and support for my son and our entire community.

 

AS: How did you go about lighting up your block?
SH: We have 26 houses that have 3 or 4 lights on their house. I went to Home Depot and bought 90 Blue lights. I will give the lights to my neighbors for free. I will also encourage them to make a donation to Autism Speaks! I am looking forward to seeing all the houses on the street LIT UP BLUE!

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

Social Skills and Autism

March 28, 2011 36 comments

Welcome to this installment of ‘Topic of the Week.’ These topics stem from submissions from our community. If there is anything in particular that you would like to see featured, please contact us!

People on the autism spectrum often have issues with social interactions. Often, a person on the spectrum has difficulty with basic social skills. How do you work on your social skills or the skills of your child? What tips do you have and what strategies do you use to improve this skill set?

For more information on social skills, including information from experts, teachers, and families, along with useful resources to help enhance your family member’s opportunities to be part of the community please visit this installment of Community Connections.

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.

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