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Archive for March, 2011

To Mainstream or Not to Mainstream?

March 30, 2011 43 comments

To Mainstream or Not to Mainstream? That is the question in this week’s Parenthood episode, ‘Taking the Leap.’

Fearing the worst, Adam and Kristina meet with Dr. Robertson, the principal of Footpath, Max’s school. But the news is good, great even. Max is doing so well, they’re having to look for new ways to challenge him in the classroom moving forward. In fact, Adam and Kristina might want to consider transferring Max to a school where he can reach his full potential both academically and socially – i.e. mainstreaming.

Have you mainstreamed your child? What has your experience been? Did your child grow academically and socially?

To watch the full episode please visit here!

The Story Behind Autistic-Like

March 30, 2011 2 comments

This is a guest post by Erik Linthorst is a 13-year veteran of the film business. An award winning documen­tary filmmaker and a produced screenwriter.  Erik founded Pergé Produc­tions in 2006 to make films aimed at helping families with children with special needs.  In his advocacy work, Erik travels worldwide, present­ing his film and advancing the issues it raises.

Throughout April, PBS stations around the country will air a documentary film Erik Linthorst made about searching for the right help for his son, Graham, who doctors called “autistic-like”   Check your local listings for airtimes, or www.autisticlike.com.

Autistic-Like:Graham’s Story started as a project for me, but I now realize it has become something more like a community. Many people have told us our story sounds so familiar, and that’s really why I made the movie: I felt like it shouldn’t be so hard to find the right help for our children.

Our story began in 2005, a very hard year for our family.  Our seventeen-month old son’s quirks were blooming into full-fledged obsessions.  We had experts on one side saying he was clearly and possibly severely autistic.  We had experts on the other side saying he was most likely not autistic. Still others insisted he was too young to diagnose.  We had family and friends on both sides giving us advice that was by turns helpful, misguided and sometimes downright bad.  My wife and I were in an emotional tailspin, alternately propping each other up and freaking each other out with our anxious thoughts.

Then we began the slow process of digging out:  discarding this expert for that one, this treatment for that, this book for that, this piece of advice for another.  And we grew in strength.  Once I was back on my feet, and feeling armed with new understanding, I felt the desire to reach out to families just beginning their hard year.  I felt like sharing our story might help them dig-out faster.  So, being in the film business, I decided to make a documentary about our journey.  I brought out my camera, began to chronicle our lives, and recruited journalist Jody Becker to help investigate the issues, elevating an intimate family story into what we aimed to make a thoughtful report from the edge of the autism epidemic.

Then I sent the film, Autistic-Like: Graham’s Story, out into the world and planned to be done.  But then the emails started coming in.  And they kept coming.  Then the trickle became a wash, several a day, coming in from all over the U.S., and then Canada, and then from all over the world.  And they all had questions.  What did I think about this therapy? that biomedical approach? This doctor? That organization?  I took the time to respond to all of them, because the truth is it helped me feel no so alone, too.

I heard from professionals, as well.  Many told me they use the film as a new parent orientation tool. They shared that they were teaching workshops, and seminars with it.  Schools were holding movie night fundraisers.  But they had questions too:  How could they see the extended interviews from the film?  Did I have an update on Graham’s progress?  workshops?

After much consideration, both for Graham’s sake as well as my wife and my own, I decided to say ‘yes’ to all of the above.

So this month our little movie hits a milestone: the PBS broadcasts include an 8-minute update “Where is Graham Now”; we have translated the film into Spanish to reach more families, and now more insights from the experts are available in a  2 DVD Box set that includes a full-color 12 page guidebook for facilitating professional and community conversations. I’ve traveled with the film, met hundreds of parents and professionals, and like the slowly dawning realization that supporting Graham is a project with no end for me, I see the film that way, too. More families, more conversation, more resources. The story continues.

Autism in the News – 03.30.11

March 30, 2011 2 comments

Mom’s Talk Q & A: Could It Be Autism? (Half Moon Bay Patch)
The word autism when mentioned in connection with your child can send an emotional torrent through the most steadfast parent. In the past few years the word has taken on new meanings and has been brought forth into the public interest with the recognition of an increasing rate of both identification and prevalence of autism and autism spectrum disorders. As rate of identification rises, services for those diagnosed with autism should rise correspondingly. Read more.

Nevada legislators consider autism programs (Carson City, Nev.)
Three programs to help Nevada’s autistic children would merge under a proposed law. Read more.

Moose Jaw woman photographs children with autism to change people’s perception of the disorder (Canada)
Photographer Jodie Goodison uses her camera to focus attention on the abilities children with autism have — not on the negatives of their disorder. Read more.

FAU students holding surf clinic April 2 for kids with autism (The Palm Beach Post)
The Florida Atlantic University chapters of Phi Delta Theta and Alpha Xi Delta are holding a surf clinic for kids with autism April 2 from 8 a.m. to noon at the Deerfield Beach pier. The clinic is free and open to all kids with autism. Read more.

Autism Awareness, Academy of Finance Fundraiser, Class of ’91 Reunion (Fort Lee, N.J.)
April is Autism Awareness month, and Friday is Autism Awareness Day. About Town has been contacted by quite a few Fort Lee families asking for our help in raising awareness about autism in our community, and because we also live daily humbled by the presence of autism, we are happy to comply. Read more.

Categories: Autism in the News

3 Days Left Until Light It Up Blue

March 29, 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!

White House, Light It Up Blue!

Today Mrs. Sergeant Major, who is a military wife and autism mom, makes an appeal to President Obama to light The White House blue. Please leave your comments on the blog, time is running out!

Who’s Lighting It Up Blue?

We are thrilled to announce that Autism-Europe will be participating in World Autism Awareness Day again this year. There are several buildings and landmarks lighting up and we are so glad they are partnering with us to light it up blue! 

Europe also came together to talk about brain banking and creating plans for sharing this most precious resource, just in time for World Autism Awareness Day! Read more about it here.

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


 

 

Clérigos Tower - Porto, Portugal

Community Spotlight 

Today’s virtual interview is with Jennifer B. from Rocky River, Ohio  

Autism Speaks: What are you Lighting Up Blue?
Jennifer B.:
Bonnie Bank ‘Blue-evard!’

AS: Why are you lighting up Bonnie Bank ‘Blue-evard?’ We love that!
JB: My 9 year old daughter Madeline was diagnosed with PDD-NOS when she was 4 years old.  As she gets older, the gap is beginning to widen between Madeline and her peers.  I believe it is so important to educate children and the community about autism.  By lighting our street blue, not only are we showing our love and support of Madeline, we are also getting people to ask questions.  I believe as people become aware and seek answers to their questions, the more they will understand…and understanding leads to friendship.

AS: How did you go about lighting up your block?
JB: B-3, as we residents affectionately refer to it, consists of 48 homes.  This past Saturday, I knocked on doors, and spoke to each of my neighbors about Autism Awareness month, Madeline, and the Autism Speaks Light It Up Blue campaign.  I told them of my desire to turn Bonnie Bank Blvd. into Bonnie Bank ‘Blue-evard.’  I was truly amazed by the response!  What I had thought would be an hour long walk along the street turned into an eight hour journey.  By the end of my ‘walk’, not only did I learn about the compassionate nature  of my neighbors, I also achieved my goal of lighting up the ‘Blue-evard!’

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

Take the Pledge to Light It Up Blue!

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.

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