Archive
Autism Speaks U Spotlight: UC Berkeley Chapter President
This guest post is by Caroline McCloskey, a sophomore at UC Berkeley. She is the president and founder of her school’s Autism Speaks U chapter and is a true ambassador for our cause! Autism Speaks U is a program designed for college students who host awareness, advocacy and fundraising events, while supporting their local autism communities.
Helping those with autism has always held a place in my heart. My older brother Joey was diagnosed with autism at a very young age, and has always been my big “little brother.” Joey has a considerably severe case of autism and is often misunderstood because he has difficulty communicating with others. He lives in the world of a six-year old and still watches Disney movies (his favorite being Peter Pan), Sesame Street and Winnie the Pooh. One of the truly amazing things about my brother is his ability to complete a 500-piece puzzle in twenty minutes – something I would never be able to do. He will never fail to impress me with his unique gift and now that I’ve gone to college and live 6000 miles away from home, I miss him dearly.
Caroline hikes to the big Campanile to raise autism awareness.
Coming to the University of California, Berkeley was by far the best decision I have ever made. As soon as I got here I knew that I wanted to get involved on campus, so I looked into various student organizations and tried to find one that promoted autism awareness or raised money for scientific research. No such club or organization existed. I thought to myself: of all the hundreds of student organizations that Berkeley has to offer, how is it that not a single one addresses the problem of autism, something that affects 1 in 110 people?
Consequently, some friends and I took the initiative and our chapter of Autism Speaks U at Berkeley was officially founded on March 9th2011. Now we have over 30 active members and have begun to establish a firm presence on campus as of this academic year. The UC Berkeley community has been very supportive of our efforts and during Autism Awareness Month this year we held an awareness campaign and small-scale fundraiser in the Unit 2 Residence Halls. Our biggest achievement so far has been lighting up the Campanile blue on Autism Awareness Day, which we hope to do again in April 2012.
Campanile Lit Up Blue.
Right now we are in the process of planning a benefit concert to be held on November 19, of this year. We are also trying to establish a mentoring program with the Berkeley Unified School District, where members of our chapter would volunteer with children and young adults on the spectrum. Furthermore, we are in the early phases of planning a large-scale walk event on UC Berkeley’s campus, which will be held on April 72012, during Autism Awareness Month.
This year we have a very strong team of officers who are all contributing incredible amounts of time and effort to our cause. It means so much to me that my friends have been so supportive of what I am so passionate about, and I honestly appreciate their help and support more than they will ever know. I know that this year we’re going to go far and it’s all because of them: thank you, guys.
To get involved with Autism Speaks U and/or the UC Berkeley collegiate chapter, contact autismspeaksu@autismspeaks.org.
Twizzles, death spirals, and throw triple-loops – all in the name of autism.
This is a post by Suzanne Lanthier, the Executive Director of Autism Speaks Canada.
In my role as Executive Director of Autism Speaks Canada, I get to meet a lot of inspiring people. It is the best part of the job.
From the families who walk, cycle and run with us from coast to coast in Canada to help raise funds to support our mission, to the service providers and teachers and aides and support workers who are so dedicated to what they do with our kids. From the rock-star researchers who work so hard to find the missing pieces of the puzzle to the incredible corporate partners who have stepped up big tim - check that – HUGE TIME for the autism community here in Canada – Toys”R”Us & Babies”R”Us, KRG Children’s Charitable Foundation, Spin Master Ltd., Mega Brands, Home Restaurants, Scotiabank, Tennis Canada, Peoples and Mappins Jewellers – to name just a few.
Let me tell you about two incredible people who have been my inspiration over the past 3 weeks.
Brad May and Anabelle Langlois.
Brad (“Mayday”) May is a Stanley Cup Winning hockey player – a 19-year veteran of the NHL where he was known as an ‘enforcer’ – you know, one of the tough guys who steps in to, well, enforce. Brad was drafted by Buffalo in 1st round, went 14th overall in his draft year and played for a number of teams in the NHL including the Anaheim Ducks and the Toronto Maple Leafs.
Anabelle – along with her pairs skating partner – Cody Hay, won Canadian pairs title in 2008 and placed 9th in Vancouver Olympics and over her wonderful competitive career has finished in top 10 at Worlds six times.
Anabelle is petite, tiny – you might say the complete opposite to Brad the tough guy. Well, looks are deceiving. Despite being maybe 4 foot nothing and maybe 70 pounds soaking wet (a bit of editorial license here) Anabelle is as fierce and as tough and as passionate as hulking hockey star. Truth be told, Brad is really a big teddy bear (but you didn’t hear that from me!).
In Canada, it could be said that we are a bit hockey-crazy. So, our version of the popular US-based show “Dancing with the Stars” is “Battle of the Blades,” where a hockey player is teamed with a figure skater to develop and perform routines with lifts, spins, throw and jumps and win money for their charities. (Not to diminish what Emmitt Smith, Jerry Rice and Donny Osmond have accomplished on DWTS but think of their training and then picture them doing the same thing but on skates.)
Not surprisingly, “Battle” draws over 3 million viewers each week from across Canada. Brad and Anabelle have selected Autism Speaks as their charity, guaranteeing us to win at least $25,000 for just stepping on the ice.
But they are not ones to just step on the ice. They are IN IT TO WIN IT. There is a $100,000 at stake for the winning couple.
So.. let’s do the math. $25K guaranteed, $100K possible, 3 million Canadians each week seeing the blue puzzle piece and hearing the word Autism.
To get there, they are working so, so, so hard. I have been lucky enough to see them at practice a few times. Let me tell you, I’m glad it’s them out there and not me.
It is hard. There are falls, bruises, bumps, blood.
But with Brad and Anabelle, there are also lots of laughs and hugs and cheering each other on.
There is a combined twinkle in their eyes that should melt the ice they skate on, and a fierce competitive spirit that will, with the support of the autism community, put them on the winning podium on November 14.
The first skate is this Sunday, September 25 with a 7 hour voting window from 7 PM to 2 AM EST – a Toll-Free phone in vote can be cast as many times as one person can get through by calling 1-877-844-8157. Online, during the 7 hour window, you can also vote by clicking at www.cbc.ca/battle/vote.html
every 5 minutes through a special Facebook application.
Voting is restricted to Canadians by phone and on Facebook but we do know that many of our friends in the US and around the world have friends, families, contacts in Canada, so please reach out to them – ask them to vote! More information can be found at www.autismspeaks.ca
Thank You Grandparents!
In recognition of National Grandparents Day, on September 11th Autism Speaks is celebrating the grandparent connection in families affected by autism. During the month of September, we are asking grandparents to share your experiences, so that other grandparents across the country can benefit from your knowledge and the road you have traveled.
We extend a special thank you on behalf of your grandchildren and your adult children for being a part of their lives. You have and will continue to make it easier for them to do what they need to do and provide for the best future possible for their family.
Autism in the News – 09.23.11
Startup company succeeds at hiring autistic adults (New Zealand)
The software testers at Aspiritech are a collection of characters. Katie Levin talks nonstop. Brian Tozzo hates driving. Jamie Specht is bothered by bright lights, vacuum cleaners and the feel of carpeting against her skin. Rider Hallenstein draws cartoons of himself as a DeLorean sports car. Rick Alexander finds it unnerving to sit near other people. Read more.
California leads U.S. in measles cases (Los Angeles Times)
California has outpaced every other state this year, with 28 reported cases. Most of the patients were unvaccinated or likely to lack the vaccination, health officials say. Read more.
Standoff threatens autism research funding (Washington Times)
House lawmakers Wednesday implored their Senate counterparts to break a logjam they said is endangering federal support for autism research and funding. Read more.
Doting dad plans daredevil plunge to raise autism awareness (UK)
A doting dad dad will take to the skies to raise awareness of autism after his three-year-old son made great progress coping with the condition. Read more.
Birmingham autism charity gets £500,000 lottery windfall (UK)
A Birmingham autism charity is celebrating after being handed a near-£500,000 lottery windfall. Read more.
In Their Own Words – Hope Found in the Light
This post is by Tara Washburn, an adult with Asperger’s Syndrome. She says, ‘I was diagnosed with Asperger’s Syndrome at age 28. I have spent the last 5 years coming to understand where I am now and what was happening inside of myself when I was a moderate-low functioning child. This is Autism from my perspective – Autism from the inside out.’ Visit Tara’s Blog, ‘Hearts that Feel‘ for more.
Autistic individuals are often put into a spectrum. This spectrum is an indicator showing how well your loved ones are able to adapt in society. I also have a spectrum, but it has a different meaning.
Everyone is on my spectrum. There are many that are on the low end of your spectrum that are on the highest end of mine. There are many who are successful (according to the world) who use manipulative means to make circumstances suit them. These people are on the low end of my spectrum. My spectrum measures function in lies or truth. It measures from despotic darkness to liberating light.
I do not pretend to be, or comprehend, the light. But I’d like to share my understanding of it and how it relates to individuals that are placed on your spectrum.
The light of truth is blinding when we are not used to seeing it. For example, imagine that you are outside on a dark night and suddenly a brilliant flash of lightning streaks across the sky. Initially you flinch and are filled with both fear and wonderment. So much is determined in that flash of light. Either you cling to the fear of the lightning, so brilliant, powerful and scary, or you cling to the wonderment, so new and somehow enticing.
Likewise, in the end, we either choose the fear that leads to hatred and suffering, or we choose the courage that leads to love and healing. There is no other path, really. All choices ultimately end in either place: we cling to the darkness or we embrace the light.
There are several ways that the world can harm to your loved ones. There are selfish people who take advantage of others, evil people who molest and make afraid, misguided people who unintentionally harm, clumsy and careless people who maim by mistake. Yet, focusing on situations that bring harm, and the individuals responsible, will not bring light to those who are seeking it. It may “take down” one more institution or individual, but it will not stop the abuse, lies, greed and corruption at the heart of the matter. If you fight them using their own weapons, you lose. Period. You cannot experience a victory for light using darkness.
I have often seen homes that cling to fear – the pain and anguish never seem to vanish out of their lives. I have seen homes that embrace truth – the healing and light seem to permeate not only those who live there, but all who enter. When I enter this kind of home I leave feeling as though I am in Heaven for a moment. I have seen other children on the “spectrum” who are likewise affected.
If you truly want to help your child, forgive those whom you feel have wronged your precious one, no matter the motive and reason. Forgive, love and you will see your child light up. The next time he begins to rock and cover his ears, running from darkness, look inside, find light and show him that there is a safe space in you.
Has anyone studied how to help toilet-train children with ASD?
This week’s answer comes from two of the clinicians who work within our Autism Treatment Network (ATN) and our Health Resources and Services Administration funded Autism Intervention Research Network on Physical Health (AIR-P). Both helped write the Autism Speaks Toileting Toolkit for parents, which will become available this fall.
Psychologist Terry Katz, PhD, of our Denver ATN Center
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Psychologist Amanda Santanello, PsyD, of the Kennedy Krieger Institute ATN Center in Baltimore, Maryland.
Around half of all children with an autism spectrum disorder (ASD) learn to use the toilet later than other children. In the Autism Speaks ATN/AIR-P Toileting Tool Kit due out this fall, we talk about why your child might have trouble and provide tips for achieving success. Here are some important points:
Toileting Challenges with ASD:
* Physical: Talk with your doctor about medical reasons that may make toileting more difficult for your child. These can include constipation, and kidney, urinary tract, or bladder problems.
* Language: Language delay can make it difficult for a child to ask to use the toilet. Children may need other methods to communicate their needs.
* Fears: Your child may be afraid of sitting on the toilet or hearing it flush.
* Body cues: Some children with autism have difficulty sensing the “need to go” and may not realize that their clothes are wet or soiled.
* Dressing: Can your child easily pull up and down his or her pants? This may need to be addressed.
* Need for sameness: Your child may have developed a habitual way of toileting and, so, may resist doing so “your way.”
* Using different toilets: Your child may have difficulty toileting in new places—such as school vs. home.
Tips for Parents:
Sit for six: Set a goal for six toilet sits per day. Start out slow. First trips may only last 5 seconds. Encourage boys to sit to urinate until they regularly have bowel movements on the toilet.
Don’t ask, tell: Take your child to the toilet and tell them it is time to go. Don’t wait for them to tell you that they need to go.
Stick to a schedule: Take your child to the toilet at the same times each day. Track when they urinate or have bowel movements and use those times if possible. Otherwise plan toilet trips around your usual routine. And think ahead: Take your child to the toilet before he or she starts an activity that will be difficult to interrupt.
Communicate: Use the same simple words, signs, or pictures during each trip. Talk with other people who work with your child. Everyone on the team needs to use the same toileting communication plan.
Reward: Praise your child for trying. Give your child a favorite treat or reward right after going in the toilet. Be matter-of-fact when accidents happen.
Consider comfort: Your child needs to feel safe on the toilet, with feet supported for balance. Also address sensory difficulties your child may have with sounds, smells, lights, or textures in the bathroom.
These are just a few of the ideas we discuss in the forthcoming Autism Speaks ATN/AIR-P Toileting Toolkit.
Please remember: Toileting can be difficult for children with an ASD. One study found that they needed a year and a half of training, on average, to stay dry during the day and more than two years to become bowel trained. So don’t become discouraged. Be consistent. Build routines. Talk with your doctor. And look for the launch of the Autism Speaks ATN/AIR-P Toileting Tool Kit. We’ll keep you posted here in the blog and on the ATN’s Tools You Can Use section of the Autism Speaks science pages.
The Autism Speaks ATN/AIR-P Toileting Tool Kit is the product of on-going activities of the Autism Treatment Network, a funded program of Autism Speaks. It is supported by cooperative agreement UA3 MC 11054 through the U.S. Department of Health and Human Services (HHS), Health Resources and Services Administration (HRSA), and Maternal and Child Health Research Program (MCHB) to the Massachusetts General Hospital. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the MCHB, HRSA, or HHS.
Autism America Radio Presented by Verengo September 24
Autism America Radio presented by Verengo Saturday, September 24 will air at a special time 2-4 PST!
Special guests Eileen Sweeney of The Motorola Mobility Foundation and Senator Katherine Clark! Join hosts Matthew Asner and Nick Geber for two hours of talk and interviews this Saturday 2-4 PM PT on KTLK 1150 in Los Angeles.
Want to participate? Call in studio 877-520-1150! Listen online and as podcast on iTunes! You can also visit Autism America Radio Presented by Verengo Solar on Facebook!
Fourth Annual World Focus on Autism
(Back, L to R) Mr. Hassan Ali Bin Ali – Qatar, Mrs. Emine Erdoğan – Turkey, Mme. Raymonde Goudou Coffie – Côte d’Ivoire, Mrs. Valeria Toribiong – Palau, Dr. Pentti Arajärvi – Finland, Mrs. Barbara Miklič Türk – Slovenia, Mrs. Sandra Thomas – Grenada, Dr. Liri Berisha – Albania, Mrs. Natalia Gryshchenko – Ukraine, Mrs. Eloise Gonsalves – Saint Vincent and the Grenadines, Prof. Saima Wazed Hossain – Bangladesh, Dr. Cecelia McCarton – The McCarton School, Mme. Ilham Hussain – Maldives, Mrs. Elsie Christofia – Cyprus, Mrs. Rosella Nestor King – Saint Lucia, Ms. Sue Herera – CNBC (Front, L to R) Mrs. Penehuipifo Pohama – Namibia, Mrs. Sarah Wescot-Williams – Saint Martin, Mrs. Shiranthi Rajapaksa – Sri Lanka, Mrs. Ban Soo-taek – Wife of the Secretary General of the UN, Mrs. Suzanne Wright – Autism Speaks, Mrs. Lorna Golding – Jamaica, Dr. Patience Faka Jonathan – Nigeria, Mrs. Hannah Jurelang Zedkaia – Marshall Islands, Mrs. Ingrid Bouterese – Suriname
For the fourth year in a row Autism Speaks brought together first spouses and esteemed dignitaries, including ministers of health, from more than 30 countries around the globe for the Fourth Annual World Focus on Autism. The event, held on Tuesday, September 20, 2011, was part of an ongoing effort to raise global awareness and share best practices for countries, communities and families struggling with this non-discriminative disorder.
Mrs. Ban Soon-taek, wife of the U.N. Secretary-General, Ban Ki-moon, in her fourth year of attendance joined event hosts Suzanne and Bob Wright of Autism Speaks. Additional distinguished guests included event Co-host Dr. Cecelia McCarton, executive director and founder of The McCarton Foundation and the McCarton School, and emcee Sue Herera of CNBC’s “Power Lunch.”
Attendees convened at The McCarton School, which provides an educational program for children with autism by using an integrated one-to-one model of therapy grounded in Applied Behavioral Analysis (ABA) combined with speech and language therapy, motor skills training and peer interaction. “This school has given so much to our children with autism, and we wanted each of you to experience it firsthand today,” said Suzanne Wright. “It’s here under this roof that the meticulous work to connect with our children with autism takes place.”
United in a global cause, a record number of dignitaries attended, including the first spouses of Albania, the Republic of Cyprus, Finland, Grenada, Jamaica, the Republic of the Maldives, the Republic of the Marshall Islands, Namibia, Nigeria, the Republic of Palau, Saint Lucia, Saint Vincent and the Grenadines, Slovenia, Sri Lanka, and Turkey.
Guests toured the school and met with students, who made glass bead necklaces for the visiting first spouses. Later, the dignitaries assembled to learn about Autism Speaks’ global initiatives – including the annual World Autism Awareness Day celebrated on April 2 and Autism Speaks’ Light it Up Blue campaign; as well as Autism Speaks’ Global Autism Public Health (GAPH) initiative. GAPH initiatives championed by individual countries, as well as regional efforts including the South-East European Autism Network (SEAN) and the South Asian Autism Network (SAAN) were highlighted during the event.
In her opening remarks, Mrs. Ban Soon-taek welcomed the international group on behalf of her husband U.N. Secretary-General Ban Ki-moon stating, “autism touches so many in the world, no matter where they live, no matter how much money they have, no matter their religion, no matter their gender. And like a pebble in a pond, the effects of autism ripple outward to parents, siblings, and caregivers. Autism is at once deeply personal and truly global.”
Speakers at the event included distinguished guests Dr. Liri Berisha, spouse of the Prime Minister of Albania; Dr. Ante Zvonimir Golem, Croatia’s State Secretary for Health and Social Welfare; Professor Saima Wazed Hossain, daughter of the Prime Minister of Bangladesh; and Professor A.F.M. Ruhal Haque, MP, F.R.C.S, Bangladesh’s Minister of Health and Family Welfare; as well as Autism Speaks Vice President of Scientific Affairs Dr. Andy Shih. Each speaker offered remarks on the significance of fostering global partnerships in combating the global public health crisis of autism.
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‘World’s First Ladies Take on Autism’ in the The Wall Street Journal.
Autism Speaks U “Back to School” LIVE Q&A Transcript
On Wednesday, September 21, our Autism Speaks U team hosted a LIVE Facebook Q&A for college students across the country. We discussed topics like how/why to start a collegiate chapter, what events to host, recruiting strategies, and how to secure event funding. If you were unable to join us last night, please read below for the full Q&A transcript. You can also visit www.AutismSpeaks.org/U for more information.|
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What is your involvement with Autism Speaks U?
I am part of an Autism Speaks U chapter. ( 38% )
I have hosted an awareness and/or fundraising event for Autism Speaks U. ( 6% )
I have just registered on the Autism Speaks U website. ( 6% )
I have just attended a Walk Now for Autism Speaks. ( 0% )
I have not done anything yet, but would like to! ( 50% )
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What is your connection to autism?
My family member has autism. ( 35% )
I work with or educate those with autism. ( 31% )
My friend’s family is touched by autism. ( 8% )
My child has autism. ( 27% )
I do not personally know anyone touched by autism. ( 0% )
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 Players sported puzzle piece jerseys and lit up their rink blue!
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If you are part of an Autism Speaks U chapter, have or will you participate in your schools fall activities fair?
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Autism Speaks U chapter at UNC at Chapel Hill tabels on campus to raise awareness!
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Various Autism Speaks U materials
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Do you know how to contact members of your alumni association?
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Autism Speaks U chapter at UC Berkeley gather together to GO BLUE!
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Will you submit a photo for our “GO BLUE” Facebook photo contest?
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I already have ( 14% )
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Dr. Ricki Robinson to Host a Family Services Q & A
On Monday, September 26 at 3pm EDT, Dr. Ricki Robinson, will discuss ASD and the Family on a Family Services Live Chat.
Having a child with ASD can and will have an impact on your immediate family and extended family. While it is easy to be distracted by your child’s often overwhelming needs, it is important to carve out time for your family and friends. Often they can be your best support. Additionally you may need help dealing with many concerns, including those that are emotionally charged, such as how to tell others about your child, whether to have more children, how to incorporate siblings into his program, and practical ones such as financing respite care and just organizing your life and family, as well as getting your own job at work done.
