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Posts Tagged ‘Autism Awareness Month’

Autism Speaks U “Light It Up Blue” LIVE Q&A Transcript

February 17, 2012 2 comments

On Thursday, February 16, our Autism Speaks U team hosted a LIVE Facebook Q&A for college students across the country. We discussed Light It Up Blue, World Autism Awareness Day, awareness/fundraising event ideas and shared links to awareness and promotions resources. If you were unable to join,  read below for the full transcript. Visit www.AutismSpeaks.org/U for more information.

4:59
Hi everyone, thanks for joining our LIVE Q&A! We’ll begin in 2 minutes.
5:02
This Q&A is intended for college students, faculty and staff.
5:02
It is text only – you’ll interact with us via the live chat client that you are logged into now. When you submit a question or comment there will be a delay from when it appears on the chat client.
5:03
Moderating this Q&A will be Sarah Caminker and Jaclyn Renner from Autism Speaks U.
5:03
Let’s do a roll call, so we know the schools that are being represented.Enter your school name and if you’re an undergrad, grad or staff.
5:03
Comment From Amanda

NYU

5:03
Comment From Theresa

SUNY Albany- undergrad

5:03
Comment From Rosalie

Seattle Pacific University, undergrad of psychology department

5:04
Comment From John

National Univ. San Diego

5:04
Comment From Elisse Bachman

Elisse Bachman, Graduate Student (’13): Bloomsburg Univ of PA (Bloomsburg, PA)

5:04
Comment From Guest

Liberty University – Undergrad

5:04
Comment From sharon moreno

VCU, Richmond, VA – parent of undergrad

5:04
Comment From Jessica

Appalachian State – undergraduate

5:04
Comment From Guest

University of Texas at Austin – undergrad

5:04
Comment From Guest

San Joaquin Delta College undergrade in early child development

5:05
Comment From Rob and LK @ Gettysburg

Co-founders and -presidents of Autism Speaks U Gettysburg College

5:05
Comment From Lori – staff

Bridgewater State University, MA

5:06
Comment From Aspen

Arizona State University Undergrad

5:06
Comment From Susan

Remington College of Nursing, faculty

5:06
Comment From Guest

Smith College, undergrad

5:06
Looks like we have a diverse group here! If anyone comes on later, please post your name and school.
5:07
Comment From Brookie

Meredith College Raleigh NC

5:07
Comment From Katrina Mesina

Chicago Autism Speaks Office

5:07
For those new to Autism Speaks U, it is a program that supports students who
-host awareness, advocacy and fundraising events
-start chapters
-become campus ambassadors.We have 50 official Autism Speaks U Chapters across the country and work with hundreds of students who host events!
5:07
Get more information at www.AutismSpeaks.org/U or email sarah.caminker@autismspeaks.org
5:07
This Q&A will include the following:
-Explanation of Light It Up Blue & World Autism Awareness Day.
-Overview of how to get your campus to participate.
-Event ideas and links to resources.
-Question and answer session.
5:08
Before we dive into our first topic, we’d like to ask….
5:08
Did you know that Monday, April 2 is Light It Up Blue and World Autism Awareness Day?
Yes: ( 73% )

No: ( 27% )

5:09
Thanks for the feedback.For those who answered no, Light It Up Blue is Autism Speaks 3rd annual awareness campaign, where iconic buildings, landmarks and schools across the world are asked to change their lights from white to blue on April 2nd in Honor of United Nations-sanctioned World Autism Awareness Day.
5:09
April 2nd also kicks off Autism Awareness Month which is all throughout April.
5:09
So what does this mean?April 2nd is a BIG deal, and we need your help to turn everything blue!
5:09
Last year, 150 colleges and universities across the country participated in Light It Up Blue by illuminating a building or structure or by hosting events on campus.
5:10
Did your school light it up blue last year?
Yes: ( 11% )

No: ( 89% )

5:10
Here are few images of buildings that went blue in 2011
5:10

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UConn’s Wilbur Cross Building.
5:11

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UC Berkeley’s Campanile
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Colgate University’s campus chapel.
5:11

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Case Western Reserve University’s Peter B. Lewis building.
5:11

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The Great Buddah at Hyogo in Kobe, Japan. – We know it’s not a school, but this is one of our favorite pictures!
5:12
Other incredible monuments that lit it up blue last year include the Empire State Building, Niagara Falls, Sydney Opera House, Christ the Redeemer Statue, Tokyo Tower and more!
5:12
A new question for everyone…..please vote!
5:12
Is your school planning to light up a building/monument blue this year?
Yes: ( 48% )

No: ( 52% )

5:13
If you answered no, here are 5 easy ways to get your school to participate in Light It Up Blue.
5:13
1. Decide what building you want to light up blue. Determine this BEFORE you ask your school to participate, so you’re prepared when meeting with faculty and staff.
5:13
2. Contact your school’s President and Student Activities Director to ask them to participate. Do this via email or by making an in-person appointment.
5:13
Download a sample letter template that you can modify and send to your school athttp://bit.ly/liubletter.
5:14
3. See if there’s an Autism Speaks U chapter (http://bit.ly/chapterlist) or one of our national philanthropic partners (Αlpha Xi Delta http://bit.ly/azdlistings & Theta Delta Chihttp://bit.ly/tdxcharges) at your school. If so, contact them and work together!
5:14
4. Ask different academic department heads (Psychology, Education, Communication, Speech & Hearing, etc.) to work with you and the school administration to light up your campus blue.
5:15
5. Explain to your school WHY it is important to Light It Up Blue.
5:15
For example, 1 in 110 individuals are on the spectrum and a new case is diagnosed every 15 minutes. All the more reason to educate your campus about this prevalent disability.
5:16
Your campus will also be aligning themselves with prestigious schools, such as Cornell University, Johns Hopkins University, Northwestern, UC Berkeley and Penn State who lit up their campuses blue last year.
5:16
Now….HOW do you actually light up the building blue? There are 2 ways.
5:16
1. The school purchases blue bulbs from a hardware and lighting supply stores and replaces the white bulbs with blue ones.
5:17
Contact your school’s facilities manager for specific details on what type of lights you will need.
5:17
2. Place gels, filters or blue cellophane over the existing lights. These can be purchased from a local lighting supply store.
5:18
A few tips about the gels/filters…
5:18
If the installed lights are very bright white light, then it is recommended to use Roscolux #80 Primary Blue.If the lights have a medium intensity or the surface isn’t highly reflective, use Roscolux #68 Sky Blue.
5:18
The school’s facilities manager will be able to discuss this in more detail, but it’s helpful to have this information on hand.
5:18
If unable to light up a building blue there are other ways to have your school participate.
5:19
If there is an electronic marquee on your campus ask them to display the Light It Up Blue logo and announce that it is World Autism Awareness Day.
5:19

5:19
Encourage students, faculty and staff to all wear blue on April 2, or on another designated day in April. Gather everyone together, take a picture and send it to us!
5:19

5:20
Get a banner hung cross campus or near student housing to let everyone know that it’s World Autism Awareness Day.
5:20

5:20
Does your school have a well-known statue, monument or mascot? If so, decorate it with Autism Speaks U banners, gear and blue balloons!
5:20

5:20
Deck out the campus in blue. See how one school got approval to paint their campus’ tunnel.
5:21

5:21
There are SO many different ways to light up your campus blue! Be creative, think outside the box and don’t forget to send us pictures!
5:22
Now for a QUESTION….please submit a response
5:22
What building(s) or monuments are you planning to light up blue?
5:22
Comment From Caitlyn

The student center

5:22
Comment From Guest

Library, student center, and quad

5:23
Comment From Guest

Dorms

5:23
Comment From Lori – staff

I would love for the University to light up the main administrative building ~ Boyden Hall.

5:23
Comment From Rosalie

Demaray Hall Clocktower

5:23
Comment From Jessica

Mascot statue and our university’s main sign

5:23
Comment From Kimberly

Hey something I haven’t seen … let’s try and get towns or cities lite up blue that day

5:23
Comment From Rob and LK @ Gettysburg

Our main historic Building, Penn hall

5:24
Comment From Guest

I would like to light up College Hall here at Smith College, MA. It is very visible.

5:24
Comment From Theresa

I requested my school to light of the University Hall which is the first building you would see if you walked onto campus or the Campus Center

5:24
Comment From Kasia

We have a building that is a historic building here that just got new led lights so the building is always lit up and they can make them change different colors.

5:24
Comment From Susan

Will encourage everyone to wear blue April 2nd

5:24
Comment From Guest

Main building

5:24
Comment From Jasmine

The preschool I work for, the quad at the college and my house!

5:24
Comment From Kasia

Possibly our Mountaineer statue as well

5:24
Comment From Theresa

University Hall or the Campus Center

5:25
Comment From Guest

We are planning on having a block party on April 2nd. We’ll be having blue bracelets that light up, so we can do a countdown for sunset and have students light theirs up then.

5:25
Comment From Mike

We’re lighting up all the dinning halls on campus blue

5:26
Comment From Brooklyn at ISU
I love that block party idea
5:26
In addition to lighting up a building blue, host an event on April 2, or throughout the month of April!
5:26
To start, download our Light It Up Blue cards at http://bit.ly/liubcards.
5:26

5:27
Print these out and distribute the cards outside the buildings that are lit blue. They are a great way to raise awareness!FYI….we’ll be listing all available materials in a few minutes.
5:27
Event ideas can include, but are not limited to:
5:27
Bake sales
Autism Speaks wristband sale
Blue cupcake eating contest
Walk/run
5:27
Blue hair extensions booth
Spare change campaign
Zumbathon
T-shirt sales
Blue flower sale
5:28
One of our favorites….a blue cake pop fundraiser!
5:28

5:28
They’re easy to make and a big hit. Download the cake pop recipe at http://bit.ly/bluecakepops.
5:29
Or try a puzzle piece campaign.
5:29

5:29
Set up a table on campus and sell puzzle piece cards to students, faculty and staff. Whoever purchases the card, signs his/her name and display the cards in your Student Center.
5:30
Attach fact cards to blue flowers and sell them on campus throughout April. It’s a great way to raise awareness and brighten someone’s day.
5:30

5:31
For more event suggestions, download our “A through Z Event Ideas” guide athttp://bit.ly/q4Ex0w.
5:33
Another QUESTION for everyone….what awareness and fundraising events are you planning for Light It Up Blue & World Autism Awareness Day?
5:34
Don’t be shy….what events are you planning on April 2nd?
5:34
Comment From Rob and LK @ Gettysburg

trying to get the entire campus to wear blue, trying to light up a couple buildings, facts will be written throughout the ground in crayon, and we will be passin out info cards as well as wrapping trees up in blue tape

5:35
Comment From Mike

We’re having an all blue relay race on campus. $20 a team to register. The team with the most creative uniform wins a gift card which was donated.

5:35
Comment From Guest

We are getting shops around the university to post facts, make donations, and decorate their stores blue throughout the month of April.

5:35
Comment From Caitlyn

I was thinking a run/walk race and if that wasn’t possible an Autism Awareness BINGO night where the prizes would be blue

5:35
Comment From Jasmine

I plan on baking blue treats, cupcakes, cookies, cakepops and getting crafty by making blue flower headbands. Also, I plan on wearing blue as much as possible through out April! My 4 yr old son has autism and he makes my whole world a better place!

5:35
Comment From Lori – staff

My hope/plan is to get the involvement started at my campus! I love the ideas people are posting though!!

5:36
Comment From Susan

Blue Sidewalk chalk might be cool

5:36
Comment From Anna

We’re setting up a blue hair extension booth from April 2-6 on campus.

5:36
Comment From Lakesha

A scavenger hunt using puzzle pieces as clue cards, having students and faculty wear blue and having a walk.

5:36
Comment From Theresa

Aside from having a building lit up blue, we are trying to get everyone to wear blue and I was having trouble coming up with an idea but I really love the idea of the cake pop fundraiser attached to fact cards. And Sunday April 1st is our walk.

5:37
Comment From Caitlyn

Also I was thinking of painting a bunch of puzzles blue and hiding the pieces around our student center and the library and the person with the most pieces got a prize

5:37
Comment From Vicky Cid

we will be wrapping trees in blue ribbon, posting fact puzzle pieces into the ground with stakes, chalking facts onto the ground, lighting up a building blue, teaming up with our student body to hold awareness events like a blueberry pie eating contest, trivia bowl, etc… and teaming up with a local bar to raise funds

5:37
Comment From Rosalie

Will try to light up the buidling, blue ribbons around trees, mass emails to student to wear blue, and a fundraiser

5:38
Comment From Kasia

We are celebrating the entire week. We’re going to get a banner and have people sign but I’m liking the puzzle piece campaign better. Selling blue or puzzle piece printed ribbon. Selling wristbands. Giving out prizes to people we see wearing blue in support. Try to do a walk and have a game night. Having a guest speaker. On the 2nd we are also having a party (if the weather is nice) out by the building that we are lighting up blue.

5:38
Comment From Jasmine

My house will be decorated with Light It Up Blue and blue decor inside and out!

5:39
Comment From Michelle

We’re having a powder-puff football game with a few different sororities on campus. All the funds raised go to Autism Speaks! We’re getting the Greek Council & Student Government Assoc. to encourage everyone to attend.

5:39
All awesome ideas! There is one GREAT way to promote your events and that is through texting.
5:39
How many emails do you open? 1 out of every 10.How many text do you open? ALL
5:40
Send a text to 10 people. Include the event info. and ask them to forward the text on to 10 of their friends.
5:40
Create a text messaging campaign to increase attendance and funds raised!
5:41
Comment From Will

That’s a great idea! I never thought of that.

5:41
We’re excited for all you have planned.
5:41
Please remember to send pictures to autismspeaksu@autismspeaks.org of your events and campus lit up blue!FYI, since photos tend to be large, only send one photo per email.
5:42
Once your event is confirmed, we’ll send out awareness materials and a banner. Email autismspeaksu@autismspeaks.org your name, mailing address, event name/time/date/location.
5:42
A few additional tips….
5:42
1. Distribute awareness materials outside the building being lit up, so students connect the color blue to autism and Autism Speaks U.
5:42
2. Remember to take pictures! Contact your school’s newspaper or photography club and ask them take a high resolution picture of the building being lit blue and of your events.
We promote all of the schools that we receive pictures from.
5:43
3. Don’t start from scratch…use our promotional materials to get the word out!
5:43
Click the links below to download the items and print them off.
5:44
Side note: We’ll be posting the transcript from this Q&A later on the Autism Speaks U Facebook (www.facebook.com/autismspeaksu), so you’ll be able to access the links again.
5:44
Customizable Light It Up Blue Posters
• 8.5 x 11 poster- http://bit.ly/liubposter1
• 11 x 17 poster- http://bit.ly/liubposter2
5:44
•How To: Light It Up Blue Flyer- http://bit.ly/liubflyer
• This offers ideas for how you can get your campus involved.
5:44
Light It Up Blue Fact Cards – http://bit.ly/liubcards
5:45
These cards were just made for Autism Speaks U & Light It Up Blue, so use them!
5:45
Autism Speaks U Quarter Cards – http://bit.ly/quartercards
5:45
Fact & School Cards – http://bit.ly/vefknD
5:45
Autism Speaks U Handout – http://bit.ly/xfp6fq
5:46
Remember to email autismspeaksu@autismspeaks.org when your school CONFIRMS what building will be lit up and/or you have a confirmed event planned for Light It Up Blue.
5:47
We promote all the schools that participate in Light It Up Blue and want to include your campus!
5:47
We have a few minutes left, and wanted to take one more poll, before we open it up to questions.
5:47
Do you prefer attending a monthly Facebook Q&A or would you rather have a monthly conference call?
Conference call: ( 11% )

Facebook Q&A: ( 89% )

5:49
Good to know that we all love Facebook!
5:49
Now, please ask any questions about what was discussed or about the Autism Speaks U program.
5:50
We’ll share these questions, so everyone can learn from each other. If you have tips/suggestions please provide those as well.
5:50
Comment From Kim

If I’m having trouble getting my school to Light It Up Blue, who should I contact?

5:50
Kim, please contact your school’s president and/or student activities director. Download a sample letter template that you can modify and send to your school at http://bit.ly/liubletter.
5:51
Comment From Mojdeh

How long does it take to start an Autism Speaks U chapter?

5:51
Mojdeh, it can take some students 1-2 months, while 6 months+ for others. It depends on your school’s process, and if you finish all the required Autism Speaks U paperwork.
5:51
Comment From Isabel

If we’re having an event can we use the Autism Speaks U logo on our flyer?

5:52
We have a specific Autism Speaks U logo that is used for people hosting events. Please email jaclyn.renner@autismspeaks.org, explain your event and we’ll provide the correct logo.
5:53
We do ask that you submit a proof to us of ALL items using the Autism Speaks U logo before it gets printed/distributed.
5:53
Comment From John

To Kim, I have found that getting the Local TV station involved can sometimes push things in the right direction.. Be Nice…

5:53
Comment From Lakesha

I am having trouble getting my school to light it up. The presidents secretary is not letting us get through, and other faculty are not showing up to meetings we have scheduled to talk about plans

5:54
We have had students email the school President directly and explain WHY it is important to light it up blue. Explain to them what this day/campaign means. You can also CC other school administration on the email, so they are appear about it as well.
5:54
Comment From Jasmine

If I host an Autism Awareness/Light It Up Blue party at my house, will you still be willing to send banners and additional materials?

5:55
Absolutely! Email us the details.
5:55
Comment From Kasia

As far as selling t-shirts are we allowed to sell the shirts from the website or does it have to be designed that we created to sell?

5:56
You can sell shirts from the website or from other places that you purchased them. Completely up to you!
5:56
Comment From Kim

John- That’s a great idea. I was thinking of contact our school and local news paper and TV station to see if they would publicize what we’re trying to do.

5:56
Comment From Mojdeh

How to you go about getting sponsors for events? My school has said that once my chapter is approved I am given $200 for the year.

5:58
Contact local businesses, restaurants, shops, etc. Stop by stores close to campus and explain to them what a sponsor for your event/chapter would entail.
5:58
Access our sponsorship guide at http://bit.ly/o2REod.
5:58
It’s a great resource!
5:59
We’re just about out of time. Thank all of you for participating in our Q&A!
5:59
It’s fantastic to see college students so involved in raising awareness and advocating for the autism community.
5:59
Remember to check out www.AutismSpeaks.org/U for more information!
5:59
If we didn’t get to your question or you have a few more, email us at autismspeaksu@autismspeaks.org.
6:00
Thanks, and have a great night!

LIVE Facebook Q&A for College Students on Light It Up Blue!

February 13, 2012 2 comments

The Autism Speaks U team will be hosting a LIVE Facebook Q&A for college students, on Light It Up Blue and Autism Awareness Month this Thursday, February 16 at 5pm EST/2pm PST. 

RSVP at http://on.fb.me/rsvpfeb or join the chat directly at http://on.fb.me/febchat.

Our team will discuss how to get started and ways to get your campus to Light It Up Blue. Plus, you’ll have the opportunity to share ideas with other students from across the country.

We look forward to chatting with you!

To see how you can get involved with the program, visit www.AutismSpeaks.org/U.

Understanding Autism: Autism Speaks Co-hosts New Jersey Seminar with the Autism Society and CDC

May 5, 2011 1 comment

In recognition of Autism Awareness Month, Autism Speaks co-hosted a seminar with the Autism Society and Centers for Disease Control (CDC) to reflect on advancements made in understanding Autism Spectrum Disorders (ASDs) since the creation of the CDC’s National Center on Birth Defects and Developmental Disabilities (NCBDDD) a decade ago. The seminar, Autism Spectrum Disorder: Understanding an Urgent Public Health Concern, was held in collaboration with the New Jersey Department of Health and Senior Services, and the state’s leading autism research and advocacy organizations at Children’s Specialized Hospital in New Brunswick, NJ.

Designed as a learning experience for partner organizations, the seminar provided a forum to evaluate the progress made in understanding autism during the past decade and future challenges at the community, state and national levels. In addition to representatives from locally based advocacy groups, speakers included Congressmen Frank Pallone, Jr. and Chris Smith, New Jersey Department of Health and Senior Services Commissioner Mary O’Dowd, NCBDDD Director Dr. Coleen Boyle, the Autism Society’s Vice President of Public Policy & General Counsel Jeff Sell, and Peter Bell, Autism Speaks’ Executive Vice President of Programs and Services. Bell provided background on Autism Speaks’ ongoing research and the role science has played in shaping our perception of ASDs. Discussions also covered a variety of issues facing individuals with autism, such as public health approaches to ASDs and ways to make a difference in the lives of families affected by this public health crisis.

This slideshow requires JavaScript.

Click here to view the slideshow presented ‘Autism Spectrum Disorders: Understanding an Urgent Public Health Concern.’

Prince George’s County Council Recognizes Autism Awareness Month

April 27, 2011 5 comments

On April 19, 2011, Council Chair Ingrid M. Turner, Esq. presented a proclamation in honor of Autism Awareness Month. Here are the opening remarks by Stacy Wiseman, Pink DREAMS TEAM Leader, to commemorate Prince George’s County Council’s recognition of Autism Awareness Month.  

Stacy Wiseman


“RAISE your hand if you know someone affected by Autism or have a family member on the spectrum.

Keep your hand up if you know what Autism is?

What is Autism?
Autism is a term used to describe a group of complex developmental brain disorders known as Pervasive Developmental Disorders (PDD).  Some of you may have heard the terms Asperger’s Syndrome, Rett Syndrome and Childhood Disintegrative Disorder. Many parents and professionals refer to this group as Autism Spectrum Disorders or (ASD).

How common is Autism?
Today, it is estimated that one in every 110 children is diagnosed with autism, making it more common than childhood cancer, juvenile diabetes and pediatric AIDS combined. An estimated 1.5 million individuals in the U.S. and tens of millions worldwide are affected by autism. Statistics suggest the rate of autism is increasing 10-17 percent annually. Studies suggest boys are more likely than girls to develop autism and receive the diagnosis 3 to 4 times more frequently. In the United States alone, one out of 70 boys is diagnosed with autism.

What causes Autism?
The simple answer is we don’t know…I want to thank  the Prince George’s County Council for recognizing  Autism Awareness Month today and say that there are many families, friends, neighbors and strangers who are affected by Autism each day.  While no child or adult with an Autism Spectrum Disorder is alike, we all have a civic duty as a community to be AWARE of this disorder and take ACTION by visiting www.autismspeaks.org  to donate toward current research in finding a cure, participate in a Walk or Run and find out more. Thank you!”

Prince George's County County Council Member Karen Toles, Council Chair Ingrid M. Turner, Stacy Wiseman and son, Council Member Leslie E. Johnson, Dr. Kara Libby and son

Holly’s Gift to the Autism Community

April 26, 2011 19 comments

This is a guest post by Peter Bell, the executive vice president for programs and services at Autism Speaks. He oversees the foundation’s government relations and family services activities and also serves as an advisor to the science division.

Peter Bell, Debra McElwain, Jason McElwain, Holly Robinson Peete, Zev Glassenberg, and Justin Kanew


For many of us in the autism community, April has become our holiday season. This year, one of the many gifts we received was extensive autism coverage on the popular CBS day time show “The Talk.” It’s probably no secret who played Santa Claus for us behind the scenes. It was none other than Holly Robinson Peete, co-host of “The Talk,” co-founder of the HollyRod Foundation and Autism Speaks Board Member. Holly and her husband former NFL star Rodney Peete  are also the proud parents of four beautiful children including RJ who is 13 years old and has autism. “Santa Holly” started planning the autism series months in advance which is obvious when you see all the segments they produced for the show’s Autism Awareness Month.

Holly and her co-hosts kicked off the month on April 1st with a beautiful video about the Peete family’s personal journey with autism. After an emotional chat with her fellow cast members, Holly invited me to talk about what families can do following a diagnosis. We discussed the basics of autism, what it is, what causes it, and what resources are available to families including Autism Speaks’ 100 Day Kit. At the show’s conclusion, audience members were given special blue t-shirts from “The Talk” and many were brought up on stage. After Holly and co-host Julie Chen urged President Obama to light up the White House blue, the ladies of “The Talk” did a countdown which culminated in transforming the set to blue in honor of Autism Speaks Light It Up Blue initiative.

The second installment of “The Talk’s” Autism Awareness Month took place on April 8th and featured an Autism Daddy Roundtable with “Criminal Minds” star Joe Mantegna and Holly’s husband Rodney Peete. The conversation about a dad’s perspective on autism continued with Jimmie Smith, a single father from Baton Rouge who raising two children on his own. He described coming to terms with his son’s autism diagnosis. Although mothers are most often the parent who takes primary responsibility for caring for a child with autism, Holly wanted to shine a light on the important role that fathers can and should take, a view not often portrayed.

On April 15th, Holly introduced us to two amazing teenagers who have overcome the challenges of autism to show the world their remarkable talents. Carly Fleischmann shared her remarkable story that captured the world’s attention when, after never speaking a word, she found her “voice” through the keypad of her computer. We then met 19 year-old Winfred Cooper and his father who shared Winifred’s incredible story accomplishing a 67 yard touchdown in high school football game. The show’s autism segment ended with pediatrician Ricki Robinson, MD offering real and practical solutions about transitioning through the teen years. Dr. Robinson is the author of Autism Solutions: How to Create a Healthy and Meaningful Life for Your Child and serves as a member of the Autism Speaks Scientific Review Panel.

The fourth and final autism segment took place on April 22nd.  “Amazing Race” teammates Zev Glassenberg and Justin Kanew joined Holly and Julie to chat about doing another season as well as the triumphs and challenges they faced with Zev having Asperger’s Syndrome. The next segment featured YouTube sensation Jason McElwain (J-Mac) who shared his inspirational story from 2006 when a high school basketball game changed his life forever. Accompanied by his mom Debra, Jason talked about his life today and his hopes for the future as an adult with autism. Finally, Holly and Leah invited me back to talk about the services adults will need and what society can do to help people with autism and their families lead more fulfilling lives. This afforded me the opportunity to highlight the recently introduced Autism Speaks Transition Tool Kit.

Perhaps the best segment of the month is one that most people haven’t seen. After the third show featuring the amazing teens with autism, Holly shared her gratitude with the studio audience while the cameras were still rolling. Throughout her “autism journey,” Holly has always taken a strong stand for autism. She genuinely believes in those who live with autism and wants to shine a bright light on their special talents and skills. She believes in listening to people with autism and helping their families care for them as best as possible. In addition to being remarkably talented, Holly is one of the most compassionate and generous celebrities in Hollywood. On behalf of the autism community, thank you “Santa Holly” for giving us the greatest gifts we could ever ask for – believing in our children and advocating for their futures.

Holly Robinson Peete and Peter Bell

Advances in treatment research: summary of the NIH/HHS videocast

April 22, 2011 8 comments

In honor of Autism Awareness month, the National Institutes of Health in conjunction with the Department of Health and Human Services held an hour-long lecture and live videocast with two seasoned autism researchers.  The talk series was titled “Advances in Treatment Research” and addressed the current state of treatment research in autism including promising new areas and the barriers to getting to effective treatments faster.

Susan Swedo, M.D., a board-certified pediatrician and the Chief of the Pediatrics & Developmental Neuropsychiatry Branch at the National Institute of Mental Health (NIMH), spoke about empirically-supported treatment options in autism, including behavioral and medical treatments. She noted that methods of behavioral intervention have been the most studied. A recent review published in Pediatrics highlighted the positive effects demonstrated in randomized controlled trials of early intervention, including the UCLA Lovass model and the Early Start Denver model of early intervention.

For medical interventions aimed at addressing core symptoms of ASD, such as social and communication impairments, the challenge of evaluating treatments has been greater.  Objectively measuring improvements in social and communication is challenging because these impairments differ widely across individuals with ASD.  For example, for some the difficulty may be establishing eye contact whereas for others it might be learning how to carry on a conversation.  Thus, defining what makes a treatment successful has been surprisingly elusive.  For medical conditions where someone became acutely ill, a return to that individual’s former health status would be considered a success.  However, autism spectrum disorders are developmental in nature, and difficulties in meeting milestones and acquiring new information about the world tend to compound.  For these reasons, it is not clear what the “baseline” is or could be for each individual and that makes the definition of success less clear-cut.   This is an even greater concern when considering the costs of treatment, including monetary and potential side effects.  For an intervention with a high probability of unpleasant side effects, the likelihood of substantial gain in function must be greater than for an intervention with little risk of negative effects.

Secondly, there appears to be a surprisingly strong placebo effect in autism studies.  For some individuals, the psychological effect of receiving “treatment”—even if it is not an active substance– is beneficial in some way.   For this reason, small and uncontrolled trials of interventions can be misleading.   Large, randomized, controlled trials are considered to be the gold standard method for evaluating effective treatments.  Another challenge is that, given that ASD is not one condition but a group of different conditions, what will work for one person may not work for another.  When individuals are studied in groups, such as in clinical trials, it might obscure the positive effects of a treatment for a small subgroup of people with ASD.

Dr. Swedo offered the historical example of secretin as a case-in-point.  Secretin is a hormone that was claimed to be a successful treatment for autism in many “open label” (ie. uncontrolled) trials.  The hormone was both very expensive and difficult to administer.  When placebo-controlled trials were completed, it was clear that there weren’t beneficial effect of the drug, but valuable treatment time and dollars were spent on something ineffective in the interim.

Dr. Swedo collaborates with Autism Speaks’ Autism Treatment Network, a group of 17 hospitals offering a comprehensive model of medical care for children on the spectrum.  The well-organized network of sites offers an excellent platform for studies of medical effectiveness where the children’s medical needs are well-attended and followed over time.

Dr. Swedo’s talk ended by discussing some new data from her research group at NIMH showing that the sleep EEG patterns of children with autism are different in a surprising way.  Young children with autism in her study spend much less time in rapid eye movement (REM) sleep and much greater time in slow wave sleep instead.  This is an interesting finding because REM sleep has been hypothesized as important for consolidating memories made during waking hours. Dr. Swedo’s group is currently engaged in the beginning phases of a study using a low dose of Aricept, a drug indicated for dementia associated with Alzheimer’s disease that has the side effect of increasing REM sleep.  Autism Speaks is currently funding a study that is examining the relationship between REM sleep and other aspects of sleep and memory in children with ASD.  We look forward to hearing the results as they emerge.

Rebecca Landa, Ph.D., CCC-SLP, is an Associate Professor of Psychiatry and Johns Hopkins School of Medicine  and Director of the Center for Autism and Related Disorders and of the REACH research program at the Kennedy Krieger Institute. Dr. Landa explores the early signs and interventions for autism during the infant-toddler period.

Dr. Landa views early intervention as “an investment of a lifetime”, because it is during this early time that children set expectations and learn what they are capable of, and the dynamic of the parent-child relationship is established. Her objective in all interventions is to “thwart the spiraling effects” of developmental disorders by improving functioning as quickly as possible.

“I like to think of intervention experience as nourishment for the brain”, says Dr. Landa.  New experiences help young children learn how to functionally interact with the world.  As young children, the sensory and motor abilities are primary and help set up more complex cognitive and social skills.  A good example is in the ‘sticky mittens’ Dr. Amy Needham uses to help young infants learn to grasp.  With the special mittens, the young infants had success at a motor skill that they could not previously perform, and this provided a scaffold for building other behaviors. Dr. Landa’s interventions are influenced by the perspective that the mind develops in a manner compelled by the physical abilities and actions of the body.

Dr. Landa also described a randomized controlled behavioral intervention for 16 month old children who have autism or were at high risk for developing autism.  Some of the children were randomized into an intensive parent education class to help the parents have more effective interactions with their infants. Other children were enrolled in a full experimental treatment group, involving a classroom-based gathering of one year olds and their parents twice a week.  In the experimental group parents learn to observe and implement strategies for engaging their children socially, with toys, and in adaptive routines that help parents generalize to the home through weekly home visits.  The children in the experimental group made substantial improvements in their gaze behavior, spending more time engaged in the sort of joint attention interactions that precede more complex social interactions. Meeting these early milestones offer the scaffold for the development of later and more complex social and communicative behaviors.

In addition to their prepared talks, both investigators answered questions from the live audience.  The videocast will be archived and available for viewing in the next few days.

It’s Not Too Late To Light It Up Blue with The Home Depot

April 21, 2011 2 comments

There is still time to celebrate Autism Awareness Month and Light It Up Blue! Join in the festivities and head to The Home Depot to purchase your very own blue light bulbs and lanterns while they are still available!

Autism Speaks and The Home Depot® have partnered to shine a light on autism during Autism Awareness Month in April. The Home Depot is selling blue Coleman LED lanterns and blue light bulbs, offering people across the country the opportunity to raise autism awareness through Autism Speaks’ Light it Up Blue initiative. A portion of each sale will go to Autism Speaks to fund research, advocacy, family services, and awareness for families struggling with this disorder.

For more information about our partnership, visit here!

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