Archive
Got Sleep Questions? We’ve Got a Webchat for You
Please join us TODAY for a live webchat with neurologist and autism sleep expert Dr. Beth Ann Malow, M.D., of Vanderbilt University Medical Center, at 1 pm Eastern (noon Central; 11 am Mountain; 10 am Pacific).
Dr. Malow will be fielding questions on sleep issues affecting individuals on the autism spectrum and their families. This webchat is being held in tandem with the same day release of Sleep Strategies for Children with Autism: A Parent’s Guide, the latest free tool kit published by the Autism Speaks Autism Treatment Network (ATN) as part of its participation in the Autism Intervention Research Network on Physical Health (AIR-P). The tool kit will become available for free download on the ATN’s “Tools You Can Use” page the same day.
Joining Dr. Malow will be ATN Program Director Nancy Jones, Ph.D., who will be fielding general questions about ATN services and other Autism Speaks resources.
We hope you’ll join us:
What: Live “Sleep Chat” with neurologist and autism sleep expert Dr. Beth Ann Malow
When: Feb. 21, at 1 pm Eastern; noon Central; 11 am Mountain; 10 am Pacific
Where: Join via the Live Chat tab on left side of the Autism Speaks Facebook page.
Autism Speaks to Young Professionals Winter Gala a Success
Last night, more than 250 guests, including Miss New York 2012 Johanna Sambucini, packed the house at the ultra-cool Avenue lounge in New York City for the fifth Autism Speaks to Young Professionals winter gala. The annual event is designed to bring together young professionals from all industries to generate funds and awareness of autism. Co-chaired by Jesse Morris and Danny Ryan, the Autism Speaks to Young Professionals winter gala raised over $33,000 dollars for Autism Speaks’ research and advocacy initiatives.
A special thanks goes out to the sponsors who helped make the event such a special evening, including RBS, Brooklyn Brewery, Crop Organic Vodka, DonQ Rum, Farmers Botanical Organic Gin, Given Tequila Liqueur, Magner’s Irish Cider, and Tito’s Handmade Vodka. And finally, thank you to Lauren Colatrella of Bakari for the delicious and festive cupcakes!
Be sure to scroll through all of the great pictures below.
Tune-in to NBC Nightly News Tonight!
Tune-in to NBC Nightly News this evening, February 17, at 6:30 p.m., ET, for an interview with Geri Dawson, Autism Speaks Chief Science Officer. Dawson will discuss the Autism Speaks funded Infant Brain Imaging Study (IBIS) reported online today in the American Journal of Psychiatry. The new study suggests the changes in brain development that underlie autism may be detectable in children as young as 6 months of age, even before symptoms emerge.
For more details, here’s a link to a Science news item on the study.
Autism Speaks U “Light It Up Blue” LIVE Q&A Transcript
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.
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Did you know that Monday, April 2 is Light It Up Blue and World Autism Awareness Day?
Yes: ( 73% )
No: ( 27% ) |
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Did your school light it up blue last year?
Yes: ( 11% )
No: ( 89% ) |
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 UConn’s Wilbur Cross Building.
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UC Berkeley’s Campanile
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Colgate University’s campus chapel.
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Case Western Reserve University’s Peter B. Lewis building.
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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!
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Is your school planning to light up a building/monument blue this year?
Yes: ( 48% )
No: ( 52% ) |
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Comment From Brooklyn at ISU
I love that block party idea
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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% ) |
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Weekly Whirl – Autism Swag!
If anyone knows how hectic life can get – WE DO! That’s why we have created the Autism Speaks Weekly Whirl to fill you in on all of the highlights of the week! The last thing we want is for you to be left out of the loop! Please share with friends and family to spread the word about all of the exciting things going on in the autism community. Keep in mind, these updates aren’t limited to Autism Speaks — we will be featuring news from across the community.
This week we wanted to focus on autism swag! We all know that awareness is key and these awesome people show us how they do it!
Tracy R
Ruth Ann Luna
Nicole Persaud Settles
Julie McDonald Gilmore
Jenny March
Autism in the News – 02.17.12
Brain scans in infants shed light on autism onset (CNN)
New research provides evidence that wiring in the brains of children with autism differs from typically developing children as early as six months of age, according to a study published in the American Journal of Psychiatry on Friday. Read more.
Doctors “fire” patients who refuse vaccines for their children: Ethical? (CBS)
Won’t get your kid vaccinated? You’re fired. That’s the extreme step some pediatricians are taking when it comes to dealing with parents who won’t get their children vaccinated over concerns the injections cause autism or other side effects. Read more.
Playground crusader (Garland, Texas)
A 10-year-old Garland, Texas girl wants her city to make city playgrounds more accessible to students with disabilities. She took her fight to the city council. Read more.
Father-Son Venture (Harvard Magazine)
In the 12 years that Tom Fields-Meyer ’84 spent writing human-interest stories for People magazine, never did he consider writing about his own family. Only on the eve of his departure from People in 2007, when his editor approached him on the subject, did he think of writing that personal story. Read more.
Special Ed Teacher Hadn’t Completed Required Credentials Upon Hire (Redwood City Patch)
The school board waived the specific credential requirements to allow Alexia Bogdis to teach special education while she was working toward certification. Read more.
Autism Speaks’ daily blog “Autism in the News” is a mix of top news stories of the day. Autism Speaks does not vet the stories and the views contained therein do not necessarily reflect Autism Speaks beliefs or point of view.
My son has sleep problems. What can help?
Today’s “Got Questions?” response comes from two clinicians in Autism Speaks’ Autism Treatment Network (ATN). Neurologist and sleep specialist Sangeeta Chakravorty, M.D., is director of the pediatric sleep program at the Children’s Hospital of Pittsburgh; and psychologist and sleep educator Terry Katz, Ph.D., of the University of Colorado School of Medicine and co-founder of the Sleep Center at Children’s Hospital Colorado.
First, know that you are not alone! Many children with autism spectrum disorder (ASD) have difficulty falling asleep and staying asleep through the night. So Autism Speaks’ Autism Treatment Network (ATN) clinicians have been studying how to help them sleep better. One result of this research is the Sleep Strategies for Children with Autism: A Parent’s Guide, made possible by the ATN’s participation in the Autism Intervention Research Network on Physical Health (AIR-P). Starting next week (Feb. 21), this tool kit will become available for free download from the ATN’s Tools You Can Use webpage.
Here are some of the tips that we and our patients’ parents have found most helpful:
1. First, ask your child’s doctor to screen for any medical issues that may be interfering with sleep.
2. Prepare your child’s bedroom for sleep: Is the temperature comfortable? Does your child like the sheets, blankets and pajamas? A dark bedroom promotes sleep, but your child may need a night light for comfort. If unavoidable noises present a problem, ear plugs or a white noise machine may help. Keep the bed just for sleeping, not for playtime or time outs. And try to keep the environment consistent: e.g. If you use a night light, leave it on all night.
3. Maintain good daytime sleep habits: Have your child wake up around the same time each morning. Try eliminating daytime naps. Help your child get plenty of exercise and sunlight, but avoid vigorous physical activity within three hours of bedtime. Likewise avoid caffeinated food or drink (chocolate, cola, etc.) in the evening.
4. Prepare for bed: Keep bed time consistent, choosing a time when your child will be tired but not overtired. Develop a calm and consistent bedtime routine. Keep the lights low.
5. Consider using a visual schedule to help your child learn and track the bedtime routine.
6. Teach your child to fall asleep without any help from you. If your child is used to sleeping next to you, substitute pillows or blankets. If you can, leave the room. If this is too difficult, stay in the room without touching—for instance in a chair facing away from your child. Over a week or so, slowly move your chair toward the open door—until you’re sitting outside.
7. Teach your child to stay in bed. Set limits about how many times your child is allowed to get out of bed. Use visual reminders such as one or two bathroom and drink cards per night. Put a sign on the inside of the bedroom door to remind your child to go back to bed. If your child does get out of bed, stay calm and put him or her back to bed with as little talking as possible.
8. Reward your child for sleeping through the night, and remind your child of your expectations. Consider drawing a contract of expectations and rewards. Small rewards are best.
Helping Teens Sleep
Like young children, teens need adequate exercise and sunlight and consistent waking and bed times. However, adolescence brings hormonal changes that can delay the onset of sleepiness until late at night. Unfortunately, many middle and high schools start early! Find out if a later class schedule is an option. In any case, work with your teen to set a good bedtime. And teens who drive need to know NEVER to drive when sleepy.
Helpful steps include having your teen finish homework and turn off computer and TV at least 30 minutes before bed. Keep lights low. A light snack before bed can help growing teens sleep through the night. Finally, it’s probably a good idea to remove electronic devices, including TVs, from the bedroom.
Have more sleep questions? Join us for a live webchat with neurologist and autism sleep expert Dr. Beth Ann Malow, M.D., of Vanderbilt University Medical Center, on Feb. 21, from 1 to 2 pm Eastern. Join via the Live Chat tab on left side of our Facebook page.
Got more questions? Please send us an email at GotQuestions@autismspeaks.org.
New Findings Hold Promise for Revolutionary Pre-Symptom Screening
Posted by Autism Speaks Chief Science Officer Geri Dawson, Ph.D.
I want to share my perspective on an important new research finding released today. The study is headed up by Joe Piven, at the University of North Carolina, Chapel Hill. I am a co-author. The study followed the early brain development of 92 infant siblings, 28 of whom went on to develop autism spectrum disorder (ASD). Infants were imaged using MRI at 6, 12 and 24 months. Those who later developed ASD showed abnormal development of white matter fiber tracts by 6 months. White matter is the part of the brain cell, or neuron, that connects one part of the brain to another. (See our related news item here.)
This finding tells us that, very early and before the emergence of behavioral symptoms, the neural networks that connect different brain regions are not developing normally in infant siblings who go on to develop autism. Previous studies of both children and adults have repeatedly shown that autism involves abnormal connectivity between different brain regions. In fact, my colleagues at the University of Washington and I did one of the first studies to show this.
Now we are seeing that these changes are evident by 6 months of age. Future research is needed to help us understand what is causing these early brain changes.
Why is this finding important? First, it helps us understand why people with autism have trouble with complex behaviors such as social interactions. Even simple social behaviors involve coordination of many brain systems. For instance, when something catches a baby’s interest, the normal response is a combination of gestures, babbling and eye contact. This requires several brain regions to communicate efficiently with one another.
Even more important, these results offer promise of using imaging results or other “biomarkers” to flag risk of ASD before symptoms become evident. In other conditions such as Alzheimer’s disease and Parkinson’s disease, such early biomarkers are being used to identify those at risk and allow treatment to start before symptoms appear – to maximize benefits.
We can imagine the day when noninvasive brain imaging is available for babies at high risk for autism (such as infant siblings of affected children). When the imaging reveals tell-tale abnormalities, these babies can receive medical or behavioral treatments that stimulate normal brain development. For example, a recent study by Marcel Just demonstrates that certain reading interventions for children with reading disabilities produce positive changes in the children’s brain white matter, or neural connectivity.
So, it’s reasonable to consider that some of the changes we are seeing in 6-month-old infants might likewise be improved through early intervention. Just’s study suggests that such “rewiring” may possible even later in life with interventions that support the connectivity between different brain regions.
Parents who are concerned that their baby might be at risk for autism may be wondering whether they should ask their doctor to order an MRI. The results published today are too preliminary for that. We are not recommending MRI screening for autism at this point. The best way to screen for autism at this time is to look for early behavioral signs (see Learn the Signs) and use screening tools such as the M-CHAT.
The research published today was funded in part by Autism Speaks and would not be possible without our community’s passionate and continuing support. Thank you.
Disability Advocates Press Case for ABLE with Congress
Autism Speaks joined with advocates from the nation’s other leading disability organizations today to make the case before Congress for ABLE—a bill that would allow families raising children with disabilities to save tax-free for their future needs.
The briefing was organized by Reps. Ander Crenshaw (R-FL), Chris Van Hollen (D-MD), and Cathy McMorris Rodgers (R-WA) all cosponsors of HR.3423, the House version of the Achieving a Better Life Experience (ABLE) Act. A panel of disability experts, including Stuart Spielman, senior policy counsel with Autism Speaks, addressed the briefing.
The Achieving a Better Life Experience Act would level the playing field for individuals with autism (and other disabilities) and their families to save for disability-related expenses. Just as families can put away savings in tax-exempt accounts for children to go to college, the ABLE Act would allow such accounts for individuals with disabilities to cover their future education, housing, transportation and related expenses. ABLE Accounts would resemble existing 529 college savings plans and would supplement, not replace, benefits provided through Medicaid, private insurance or employment.
Spielman noted the 600 percent increase in the prevalence of autism over the past two decades and the financial hardship encountered by many families caring for loved ones with autism. The ability to plan for the future needs of loved ones with autism would offer another resource for some families, he said.
John Ariale, Rep. Crenshaw’s chief of staff, said the bill was drafted so that SSI and Medicaid benefits would not be negatively impacted by opening an ABLE account. If the account balance reaches $100,000, SSI benefits would be suspended, he said. SSI benefits would resume if the account balance drops below $100,000.
Crenshaw and Van Hollen said the bill enjoys strong bipartisan support in both the House and the Senate, and already has over 90 House sponsors.
Qualified disability expenses under ABLE would include: school tuition and related educational materials; expenses for securing and maintaining a primary residence; transportation; employment supports; health prevention and wellness costs; assistive technology and personal support; and various miscellaneous expenses associated with independent living. Eligibility would extend to any individual who is receiving supplemental security income benefits or disability benefits under Title II of the Social Security Act, or “who has a medically determined physical or mental impairment, which results in marked and severe functional limitations” that can be verified by a physician.
Spielman noted that he and his wife were able to establish a traditional 529 account for their typically developing son to save for his college expenses, but are unable to do so for their other son who has autism to save for his future life needs. The ABLE act would improve the quality of life for individuals with disabilities, he said.
In Their Own Words – Our Path to Diagnosis
This post is by Jennifer, a stay at home mom with two children. In 2009 her family started walking for Autism Speaks and since then, we have raised over $38k and are gearing up for another year. Our walk team is called Grape Jelly on Pizza because my son has a very strange appetite! You can check our her blog Grape Jelly on Pizza which was created to help others navigate through all the difficult questions and behaviors associated with autism and to also remind parents that they are not alone. Support – Compassion – Awareness.
It was not a simple path to his diagnosis. Realizing there was a problem was tough. Knowing where to start was hard and dealing with the fact that your child will have autism his entire life was horrible. I haven’t heard one story that was cut and dry yet about getting a diagnosis. Here is our story.
My son was born at 13:13 on January 7th. (13 happens to be a lucky number for me.) It seemed like everyone was there to welcome in the first born grandson from both sides. It was a happy occasion. We had many visitors for months to come. He was a squirmy little guy with a big smile. He didn’t like to stay still, ever. He was hitting all of his milestones and his gross motor skills were off the charts. He was climbing stairs before he could walk. Everything seemed normal.
We didn’t want to wait, so we had another baby. My daughter and son are 17 months apart. Oh, how our lives changed when there were two. Lack of sleep because my son still wasn’t a good sleeper and now a newborn. They would both be up every three hours and not at the same time. There were days that were just a blur.
A friend of mine had a son who was five months younger than B. She would bring T over to play often. That’s when I started to notice differences between the boys. T would talk to her, point at things, make eye contact, play appropriately with toys; the list went on and on. Now, I’m not big on comparing but it couldn’t be helped. Why was B so much different than T? At night I would tell my husband about all the differences and would end up crying at the dinner table. After a while he didn’t want my friend to come over anymore because of how upset I would get.
Confirmation bias is a tendency for people to favor information that confirms their preconceptions or hypotheses regardless of whether the information is true.
When we were alone he was fine. We were fine. It didn’t matter that he couldn’t talk. Kids throw fits. We could justify anything. We were good at explaining what was happening or not happening away. Confirmation bias.
Finally we heard the word autism. Two family members stepped forward at two different times to express their concerns. Unfortunately, they left it up to me to relay the information to my husband. It is sorta like when people keep asking the girl, “When are you going to get engaged?”……go to the guy to find out. It puts her in a bad spot.
At my son’s wellness visit at 2+ we asked if he could have autism. While I was holding my son on my lap, the pediatrician said his name. My son looked up at the doctor and the doctor told us, “No. He doesn’t have autism. If he did, he wouldn’t have looked at me.” OK. Again, confirmation bias. A doctor confirmed it, he didn’t have it. Sounded good. Everyone else is crazy. Instead he wrote a prescription out for a speech therapist. This we would do.
After the intake and he started therapy, his speech therapist suggested he had developmental delay. OK. No ‘autism’ word. We kept with the speech therapy. In the meantime I had contacted the county to get started on getting him evaluated for speech delay and developmental delay. Not autism. The papers were received in the mail, completed and re mailed that same day. I knew he needed help. I waited and finally got the appointment call.
So we went and of course he qualified for services. The report brought me to tears. I HATE reading those reports. Still do. Then I get a call from someone saying she was his teacher. I was like, what? Turns out he qualified for 1/2 days, 4x a week and he could ride the bus. He started when he was just 3. I had never been away from him with the exception of having my daughter. It was tough. Then a few months went by and I received a flier in his backpack advertising an Autism Awareness day at Sesame Place. Autism? He doesn’t have autism. Speech and developmental delay yes but not autism. I called the teacher to see if it was a mistake and she said, oh, I must have put it in his backpack by accident. See, every professional we had dealt with up to this point had never used the autism word. Since then we found out why. If a professional says ‘autism’ to you and you don’t have insurance, then they are responsible to pay for your services. Didn’t know that did you?
I also started going to a parent support group through the IU and after the second time a mom told me the truth……speech delay & developmental delay = autism. We now had to find a developmental pediatrician to get an official diagnosis then start with medical assistance. My head was spinning and I went into depression. I swear I lost days, weeks and months. Feeling completely numb and truly alone in my quest to get help. I tried my best not to show the stress. Like I was in control but I was falling apart.
Eventually, we went in to see the developmental pediatrician. We walked out with an official diagnosis of autism. For the first time I had a smile on my face. I knew what it was, it had a name and I was going to do everything in my power to help my son. Nothing was going to stop me and nothing has. We are a strong family unit out to do whatever it takes to not only help our son but to help others. We are not alone. You are not alone. We are all here for each other. We need to continue to reach out to others.
“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.
