Interesting information in this press release:

It’s still unclear what’s different in the brains of people with autism spectrum disorders (ASDs), but evidence from genetic and cell studies points to abnormalities in how brain cells (neurons) connect to each other. A study at Children’s Hospital Boston now provides visual evidence associating autism with a disorganized structure of brain connections, as well as defects in myelin — the fatty, insulating coating that helps nerve fibers conduct signals and that makes up the brain’s white matter.

Researchers led by Mustafa Sahin, MD, PhD, of the Department of Neurology, Simon Warfield, PhD, director of the Computational Radiology Laboratory, and first author Jurriaan Peters, MD, of both departments at Children’s, used advanced magnetic resonance imaging (MRI) to image the brains of 40 patients (infants to age 25) with tuberous sclerosis complex and 29 age-matched, healthy controls. Tuberous sclerosis is a rare genetic condition often associated with cognitive and behavioral deficits, including ASDs about 50 percent of the time.

“Patients with tuberous sclerosis can be diagnosed at birth or potentially before birth, because of cardiac tumors that are visible on ultrasound, giving us the opportunity to understand the circuitry of the brain at an early age,” explains Sahin. “Our ultimate goal is to use imaging in infancy to find which tuberous sclerosis patients are at high risk for autism so we can intervene early. This may have implications for autism in patients without tuberous sclerosis as well.”

The team used a relatively new MRI technique called Diffusion Tensor Imaging to trace the pathways of nerve fibers by measuring the diffusion of water in the brain. In the January issue of the journal Academic Radiology, they report findings in the corpus callosum, the brain’s largest white-matter structure that acts as a highway transferring signals between the left and right cerebral hemispheres.

Of the 40 patients with tuberous sclerosis, 24 had clinically significant developmental delays or intellectual disability, and 12 had ASDs. ASDs were diagnosed clinically by a pediatric neurologist, and, in most cases, by the Autism Diagnostic Observation Schedule (ADOS).

In general, compared with controls, patients with tuberous sclerosis had higher radial diffusivity values, a measure of water diffusion out of (perpendicular to) the nerve fibers (axons). Radial diffusivity is an indirect measure of how well insulated the axons are: Having higher radial diffusivity means axons are poorly insulated with myelin, suggesting abnormalities in the white matter (which is partly made up of myelin.

Patients with both tuberous sclerosis and ASDs not only had increased radial diffusivity — compared with both non-ASD patients and controls — but they also had clearly disorganized axon pathways.

As shown in the images, axons in the control subjects followed well-defined directions in organized bundles (left panels), while the ASD patients’ axons (right panels) tended not to orient together in common directions (referred to in the paper as having lower fractional anisotropy). Tuberous sclerosis patients without ASDs (middle panels) showed only slight disorganization compared to controls.

“This study shows that we can use diffusion tensor imaging to differentiate tuberous patients with autism from those without autism,” says Sahin.

“Our advances in imaging and in image analysis are enabling us to identify and quantitatively characterize alterations in brain development that are not readily visible in conventional imaging,” adds Warfield.

The findings add to previous human imaging studies by Sahin and Warfield showing similar differences in the brain’s visual cortex, and are consistent with brain MRIs in older, high-functioning individuals with ASDs, showing abnormalities in connectivity in the corpus callosum and in areas of brain involved in language and social skills.

The findings are also consistent with studies in Sahin’s lab using mouse models of tuberous sclerosis. The neurons in these mice grew multiple axons (normal neurons grow just one), causing too many connections being made, and axons originating in the retina failed to land in the right places in the brain and did not respond to navigation cues.

Additional studies showed that the axons in these mice had less myelination, identified the biochemical pathway causing these defects, known as the mTOR pathway, and showed that the pathway and the myelination defects could be reversed in mice with the mTOR-inhibiting drug rapamycin.

Armed with these data, Sahin has launched a Phase II clinical trial of a rapamycin-like drug called Afinitor® (everolimus; formerly RAD001), sponsored by Novartis, the Tuberous Sclerosis Alliance and Autism Speaks. The trial will enroll 50 patients with TSC to test whether Afinitor improves neurocognition, autism, seizures and sleep disorders. “Specifically modulating neurocognition with a small molecule is only starting to be done,” says Sahin. (For more on this trend, see this related blog post. )

“Ultimately, imaging will play a crucial role in identifying who may benefit from treatment, and in seeing the changes in the brain in response to treatment,” says Warfield.

For information on enrollment in the TSC and Neurocognition Trial, visit http://www.tsclinic.org/participate-in-a-research-study.php.

The imaging study was funded by the National Institutes of Health with additional support from the John Merck Fund and the Children’s Hospital Boston Translational Research Program.

Photo: everyone’s idle/Flickr

Five years ago today my youngest child and only daughter was diagnosed with autism. It is hard to believe that it has already been five years and in that time she has gone through some amazing periods of growth. The picture above was taken yesterday, at her birthday party. For the first time ever she invited classmates to her party and 7 of the 8 she invited showed up; I’d say that was a pretty successful first non-family birthday party.

Her actual birthday isn’t until tomorrow. That’s right, my daughter’s first third birthday gift was an autism diagnosis. It caught us all by surprise but certainly didn’t sour her birthday celebration. We bonded together as a family and I got about the business of finding out what services she could qualify for and what services would be the most beneficial for her. That intense focus on advocating for her is what got me through the first year. It is also what pushed me to launch The Autism Education Site.

Thank you to everyone who has stuck with me over the years and to my new readers as well. I’m not the biggest autism site out there (by far) but this site has helped me cope with the ups and downs over the years and for that, I have you to thank.

~ Melissa ~

“Are We There Yet?”
Traveling with a Child with Autism
By Pamela Levac
Autism Asperger’s Digest,Nov-Dec 2007 issue (www.autismdigest.com)

Special Travel Options Arranged Specifically for People Who Live with Children or Adults with ASD

More and more families are enjoying the comfort and familiarity of travel options arranged specifically for people who live with children or adults with ASD.

One such venue is a cruise run by Autism on the Seas (http://www.alumnicruises.org/Autism/Autism_Home.htm). Director Michael Sobbell decided to offer these cruises as a simple business venture, but he says the overwhelming positive response from parents has been heartwarming.

The cruise ships have an Autism Group Specialist on board and even cater to a child’s special dietary needs. There are opportunities to dine with other families or children with autism. Activities for the whole family, such as bingo, are adapted so everyone can have fun together. Sibling celebrations offer the brothers and sisters of spectrum children a chance to socialize and maybe share some of their highs and lows. There are social gatherings for teens with autism, and even respite time for parents. It’s a supportive environment where families can build new friendships and feel comfortable.

Sometimes it might be necessary to consider traveling without your spectrum child. Peggy has two adopted daughters from China who do not have autism. She would like to travel with them to their birth country unencumbered by the significant adaptations they would need to make for Eric. Peggy fears the long distance, the very unfamiliar sights, sounds and food of China will be too much for Eric to handle. She doesn’t want her girls to be stuck in a hotel room watching TV on a once in a lifetime trip. So, even though it is a difficult decision to divide the family, she and her husband will travel to China with their daughters. As for Eric, he’ll spend time with favorite relatives while they are away, and Peggy plans to take him on a special train trip to Vancouver when they return from China.

Finally, if at all possible, don’t skimp on those fundamental things that will make or break your vacation. It’s worth paying a few extra dollars for a seat in first class or a nicer hotel room with free movies, if this will make your child’s (and therefore your family’s) trip easier and more enjoyable. Anticipating vacations is often half the fun. With spectrum children, a month or two (or three) of anticipation, careful planning and preparation can make all the difference. Bon voyage!

Travel Tips

• create a story book about your trip to read to your child beforehand
• choose an appropriate destination (quiet, somewhat familiar)
• call ahead to ask about special services, meals and accommodations
• consider a vacation rental instead of a hotel, so you can prepare your own meals
• if you are driving, map out stops ahead of time, and prepare for delays
• carry with you a “sensory pack” containing plenty of familiar food, toys and other essentials
• brainstorm possible problems and create a contingency plan
• talk to other families who have traveled for real-world ideas and advice
• plan structured activities for every day; don’t abandon using visual schedules just because it’s vacation!
• make sure to include some activities for everyone, including parents and other siblings
• travel at quieter times of the year
• bring a copy of your child’s diagnosis to show personnel if necessary
• be flexible, and try to keep your sense of humor

Helpful Resources
Making Peace with Autism: One family’s story of struggle, discovery and unexpected gifts by Susan Senator. Trumpeter Books, December 2006.
“How to Plan a Vacation with Your Autistic Loved One” by About.com’s autism guide, Lisa Jo Rudy. http://autism.about.com/od/copingwithautism/ht/vacationstep.htm
UK Guardian’s website has a helpful travel section: http://travel.guardian.co.uk/article/2005/jan/08/userstraveladvice1

BIO
Pamela Levac lives in Canada where she writes, paints and mothers her children. She is fascinated by the workings of the brain and has a keen interest in Autism Spectrum Disorders. She welcomes email at pamela-246hotmailcom.

Dear Sensory Smarts,
My five-year-old is such a picky eater! There are only a few foods she’ll eat: pasta, pizza, and ice cream. She wants to eat macaroni n’ cheese almost every meal, but it has to be one particular brand. If the store is out, she will not eat another brand. My parents and in-laws think it’s because I spoil her. They all say I should serve her what everyone else is having and if she doesn’t eat, then tough. I did try it once and she simply did not eat. Help!
From,
Mac n’ Cheese Maven’s Mom

Dear Maven’s Mom,
Kids with oral sensory issues and food aversions will not eat foods they find repulsive and may wind up with nutritional deficiencies. Your child did not become an extremely selective eater because of something you did. It may help to consider the underlying factors that may be impacting your child’s inability to tolerate a wider variety of foods.

Oral Sensory Problems
Kids with sensory challenges, especially those on the autism spectrum, often have sensory issues in and around the mouth. Remember that the lips, tongue, inside cheeks, and throat are lined with skin. A child may be exquisitely sensitive to textures, and unable to tolerate foods that are lumpy, slippery, chewy, crunchy, or a combination of textures, like yogurt with granola. Some kids are particular about flavors, and may only eat foods that are bland, sweet, or even highly spiced. Some kids are particular about temperatures and insist on or refuse foods that are cold, hot, or lukewarm. Some kids stuff their mouths to feel there’s something in there. Other kids object to the way food looks or when items touch each other on a plate.

Some problem feeders have oral-motor weakness, and lack strength and stability in the lips, tongue, and jaw for nursing and later for eating solid foods. Jaw weakness makes chewing difficult while tongue weakness makes it hard to form a bolus (round food mass) to swallow. High or low muscle tone in the mouth can also be an issue. A child may have a hyperactive gag reflex and avoids eating and gagging. At its most extreme, a child may throw up when an offending food is tasted, smelled, or simply mentioned.

Most kids on the spectrum crave predictability. Your daughter may insist on exactly the same brand of mac n’ cheese cooked exactly the same way as a form of control in a world that sometimes feels out of control. If she has successfully eaten that one type of mac n’ cheese in the past, it’s got to be the very same kind in the future.

It sounds like your daughter sticks to “the white diet,” consisting of carbs and cheese, a common diet among kids with sensory issues. These foods are relatively soft and have an easy “mouth feel.” Unfortunately, these foods consist of gluten and dairy, which many kids with autism do not tolerate well. Gluten is the main protein in wheat and other grains and casein is a protein in cheese and other dairy products. The theory is that these proteins trigger immune responses in some kids, resulting in a pleasurable, druglike response. Gluten and casein sensitivities are worth exploring with a nutritionist or allergist.

When a child has a significantly limited food repertoire, do not withhold the few foods that are acceptable. If you take away that one brand of mac n’ cheese, you’re taking away one of the few sources of nutrition for your child, even if it is a poor one. Pizza can be healthy if you buy or make it with high-quality ingredients.

I start by identifying one food the parent would like to add to a child’s diet, typically a fruit or vegetable. If possible, the child selects the particular fruit or vegetable.

Got a question? I’d love to hear from you. Please email questions to Lindseysensorysmartscom.

The following press release may be of interest to readers in the Washington, D.C. area.

Best Buddies International , a nonprofit dedicated to creating opportunities for friendship, employment and leadership training for people with intellectual and developmental disabilities (IDD), is pleased to announce that Johan de Nysschen , President, Audi of America, will serve as Chairman of the Audi Best Buddies Challenge: Washington, D.C. More than 1,200 people are expected to participate in the Challenge – a charity walk, run and ride to benefit Best Buddies International – on October 22.

“I am deeply honored to serve as Honorary Chair of this year’s Audi Best Buddies Challenge: Washington D.C.,” said de Nysschen. “And I am particularly proud of the extended level of connection our company has established with Best Buddies since the inception of the partnership. This year, with over 100 employees, dealers, partners and their friends and families joining the Audi team, our participation once again reflects this commitment.”

Additionally, Ted Leonsis, Owner, Washington Capitals, Washington Mystics and Washington Wizards, and his buddy Ken Holden, a Best Buddies participant, will join de Nysschen as Honorary Co-Chairs.

US Senator Jeff Bingaman (D-NM), US Senator Roy Blunt (R-MO), US Senator Richard Burr (R-NC), US Senator Tom R. Harkin (D-IA), US Congressman Gregg Harper (R-MS), US Senator Barbara A. Mikulski (D-MD), US Congressman Jim Moran (D-VA), US Congresswoman Eleanor Holmes Norton (D-DC), US Congresswoman Nancy Pelosi (Democratic Leader), US Senator Jim Risch (R-ID), US Senator Marco A. Rubio (R-FL), and US Senator Mark R. Warner (D-VA) have also graciously agreed to join the Challenge’s Political Ambassador Committee to help promote not only the event, but also inclusion for individuals with IDD.

“I personally know how much people with intellectual and developmental disabilities have to offer if just given the chance,” said Senator Harkin. “I have always worked toward creating a world where all people, including those with intellectual and developmental disabilities, have meaningful opportunities for participation and inclusion. Best Buddies works every day to achieve this goal, and I am so proud to support their work.”

On Saturday, October 22, hundreds of cyclists will take to the starting line at the base of the Washington Monument on the National Mall for a 100K (62-mile) or 20-mile ride through our nation’s capital. The Challenge, which is open to participants of all ages and abilities and is designed to showcase the Best Buddies mission in action, also features the Carl Lewis Challenge , a 5K run/walk led by the Olympic gold-medalist himself, and the Celebrity-Student Fun Run , a 5K run/walk for high school and college students led by “Glee’s” Lauren Potter, who is also serving as Honorary Chair of the Fun Run.

“I am looking forward to leading the Celebrity-Student Fun Run, because I want to help raise awareness about Best Buddies,” said Potter. “Best Buddies is very important, because it helps makes everyone – especially kids and young adults with intellectual disabilities – feel included! I hope that people who watch me on ‘Glee’ will want to join me in supporting this amazing organization!”

Several other celebrities, professional athletes and special guests are also expected to participate in the Challenge, including pop artist Romero Britto ; Miss Teen USA Danielle Doty ; American cycling legend Bobby Julich ; and American Olympic cyclist Bobby Lea and his brother Syd Lea , a Special Olympics gold-medalist in cycling, all of whom will be encouraged to compete in Friendship Races on tandem bicycles. This year, there will be a special Friendship Race in honor of the late Eunice Kennedy Shriver and Sargent Shriver called the Family Challenge, during which participants will be invited to compete with their mothers and fathers for gold, silver and bronze medals.

The Challenge will be capped off by a luncheon and private musical performance by Kool & The Gang.

In addition to Title Sponsor Audi, Challenge sponsors include: May Liang & Jim Lintott, the Capital Trust Group, Gerry Klingman & Associates, the Leonsis Foundation, Bosch Diesel Systems, Rosetta Stone, Perfect Sense Digital, Niche Media, and NBC.

I’ve added the Center for Autism and Related Disorders’ 11th Annual Autsim Conference to my list of 2011 autism conferences. The event, Autism Through the Lifespan, will be part of CARD at Kennedy Krieger Institute’s offerings. Conference information follows:

Conference Dates: October 20-21, 2011
Conference Location: Timonium (Baltimore), Maryland
Conference Venue: Crowne Plaza Hotel
Conference Speakers:

• Peter Gerhardt, EdD
• Rebecca Landa, PhD, CCC-SLP
• Jennifer Accardo, MD
• Maureen Van Stone

Conference Information:
This year’s conference brings together nationally recognized experts to address critical topics for autism professionals, educators, and family members, including early diagnosis, the latest intervention strategies, and issues for management across the lifespan.
Conference Website: http://www.autismconference.kennedykrieger.org/
Contact Email Addresses:
Dr. Elizabeth Stripling – striplingkennedykriegerorg
Joy Johnson – johnsonjoykennedykriegerorg

It’s been a crazy few weeks for me but I have a lot of exciting things in the works. In the interim, check out this new free online autism webinar from Rethink Autism – Key Components of an Effective School-Based Autism Program.

An estimated 637,000 children ages 3-17 in the U.S. (or 1 in 91) had a current Autism Spectrum Disorder (ASD) diagnosis in 2007 according to a widely accepted study(1) published in Pediatrics. That represents a 67% increase from a previous estimate by the Autism and Developmental Disabilities Monitoring (ADDM) Network, which reported autism rates of 66 per 10,000 children (or 1 in 150) in 2002.

With such an alarming growth in the prevalence of autism, it is no surprise that public school districts nationwide are struggling to keep pace with the complex needs of a growing autism population. Students’ needs are usually addressed through the Individualized Education Plan (IEP) process, where educators propose specific programs and services while parents advocate for what they believe is best for their children on an individual basis. Often this puts schools and parents in an adversarial relationship, missing the “big picture” and the opportunity to create a program structure of best practices that have been proven effective in supporting students with autism.

As part of its commitment to the autism community, Rethink Autism (http://www.rethinkautism.com) is offering a free online webinar, “Key Components Of An Effective School-Based Autism Program,” for school district leaders, teachers and parents on Wednesday, Feb. 2 at 1p EST / 12p CST and Tuesday, Feb. 8 at 3p EST / 2p CST, presented by Jamie Pagliaro, who is the Executive VP at Rethink Autism and Founding Executive Director, NY Center for Autism Charter School.

The webinar will identify seven key components that research and practitioners agree are necessary to effectively support students with autism. It will provide a framework for district leaders to allocate resources, for teachers to coordinate direct services, and for parents to advocate, in a collaborative effort to improve supports for students on the autism spectrum.

This free online webinar is open to anyone with Internet access – parents and professionals – but capacity is limited so registration is required to attend (at http://www.rethinkautism.com). In its Expert Access webinar series, Rethink Autism connects the autism community with leading experts to share knowledge and perspectives on a variety of important topics.

Rethink Autism’s unique web-based program provides teachers with a comprehensive evidence-based curriculum through 1200+ video-based teaching steps, parent and staff training modules, an assessment tool, and progress tracking features. The curriculum, endorsed by leaders in the field of autism treatment and research, spans the entire autism spectrum and covers a broad range of skills, including academics, language, social, motor, daily living, and behavior managements.

Imagine my surprise when I went to log in to my blog tonight to prepare a post for tomorrow and I receive an error message stating that my database cannot be found. After a brief freak out moment (I have backups!) I logged in to PHP MyAdmin and repaired the database tables and the blog is back online. I know that it was working early this morning but somewhere mid-morning, at least I’m guessing based on traffic trends, it went offline. Sorry about that!

Here’s a press release of interest:

Autism Support Network Grows Autism Resource Database, Now Lists Service Providers Across 58 Countries

Autism Support Network (ASN) announced the growth of its free global autism resources database that now covers 58 countries around the world, found at http://www.AutismSupportNetwork.com. One of the leading autism support communities available online, ASN connects families and individuals touched by autism spectrum disorder (ASD) with each other, provides support and insight, and acts as a resource guide for autism treatments and therapies, news and information, services, grants, and strategies.

“Autism is a global condition, growing explosively,” said Brian Field, co-founder of Autism Support Network. “With members from over 200 countries, we continue to augment our service provider directory listings so as to better help those seeking therapeutic assistance. We are proud that we are able to serve as many people as we do, and continue our mission to connect and provide aid to those seeking answers, connection and support.”

Autism Support Network has a roster of partners both in the United States and internationally, including: Autism Hangout; Aid for Autistic Children, Inc; Parenting Special Needs Magazine; Spectrum Magazine; Beijing Stars and Rain; Autism South Africa; Hagar International; and the Israeli Society for Autistic Children.

Today 1 in 110 children is diagnosed with autism, with a new case diagnosed every 20 minutes and is the fastest-growing developmental disability in the United States. More children will be diagnosed with autism this year than AIDS, diabetes and cancer combined. Autism is characterized by impaired social interaction, problems with verbal and nonverbal communication, and unusual, repetitive, or limited activities and interests. Other ASDs include Asperger syndrome, Rett syndrome, childhood disintegrative disorder, and pervasive developmental disorder not otherwise specified (usually referred to as PDD-NOS). Males are four times more likely to have autism than females.

When I first created my Autism Conferences in 2011 list in October 2010, several conference dates for 2011 were not yet announced. Today I have updated my list to include the dates for the following conferences:

• Generation Rescue’s Autism One Conference in Lombard, Illinois (May 2011)
• National Autism Conference in St. Pete Beach, Florida (November 2011)

Thanks to my great readers for keeping me updated as new conference details are released. I’m a one-woman show here and so I appreciate the help.