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Archive for the ‘Autism Awareness Month’ Category

By Peter Hotez, M.D., Ph.D.
Founding Dean, National School of Tropical Medicine, Texas Children’s Hospital Endowed Chair in Tropical Pediatrics

 

Today is the seventh annual World Autism Awareness Day, a day when organizations committed to autism research, advocacy, or policy promote awareness through events and public discussions.

As both a scientist and a father of four – one of whom is an adult child with autism (as well as other mental and physical disabilities) and a second who is actually doing her Ph.D. on the developmental psychology of autism – I am often asked to speak or provide public comment about the autism spectrum conditions, especially their causes.

Indeed, the fact that I lead a multidisciplinary team that develops neglected disease vaccines while also serving as President of the non-profit Sabin Vaccine Institute and Texas Children’s Hospital Center for Vaccine Development often places me front and center in the dialogue about purported links between autism and vaccines.

For me, the issue is completely straightforward.  From a scientific perspective, there is no scenario where it is even remotely possible that vaccines could cause autism. Instead everything I know both as a parent and as a scientist points to autism as a genetic or epigenetic condition.

new paper just published in the New England Journal of Medicine by Eric Courchesne and his colleagues at the University of California, San Diego, confirms that the brains of children with autism have distinct patches of architectural disorganization in their prefrontal and temporal cortical tissue.  Because the organization of the cortex begins in the second trimester of pregnancy, Dr. Courchesne concludes that the events leading to the malformation of the cortex must begin around this time or perhaps before then, certainly well before a child is born or ever receives a vaccine.

These new findings make a lot of sense.  Another term for autism is pervasive developmental disorder (PDD) and indeed I am often struck by how my child’s neurological deficits are indeed pervasive and that there is no plausible way a vaccine injection could cause such profound structural changes to the brain.

Sadly, there are still widely held misconceptions about vaccines and many parents still continue to attempt to withhold or delay urgently needed vaccines for their child.  For instance my colleague Anna Dragsbaek, who heads The Immunization Partnership, tells me that each year tens of thousands of children in Texas do not receive their full complement of vaccinesbecause parents opt out due to unwarranted fears of adverse side effects of vaccines.

The results of not vaccinating your child can be devastating, such as in a recent measles outbreak in Tarrant County, Texas, and another one in Orange County, Calif., that were both totally preventable.  I like to emphasize that measles is not a benign illness, and can cause pneumonia, ear infections, diarrhea and in severe cases, encephalitis.

My research group works closely with the Institute of Health Metrics and Evaluation at the University of Washington Seattle, which recently published findings indicating that worldwide 125,400 children died from measles in 2010, in addition to 81,400 from pertussis, 61,300 from tetanus, and almost one million from pneumococcal disease. We have safe and effective vaccines for each of these diseases and sadly, most of these deaths could have been prevented!

So on this day I hope to continue to educate the public both about our safe and effective vaccines, while focusing national attention on autism where it belongs, namely the urgent need for research on the autism spectrum disorders.

There are some excellent resources for the latest research on autism as and the lack of a correlation between autism and vaccines, as well as for parents to identify autism early, when intervention is most effective.

Here at Baylor College of Medicine and Texas Children’s Hospital there is some extraordinary work going on in our Department of Genetics and at the Jan and Dan Duncan Neurological Research Institute.  Our scientists are making extraordinary discoveries leading to the development of new and innovative interventions to combat autism.

As a parent and a vaccine researcher, it is my hope that we put all available resources towards finding the true causes of autism, while also continuing to fully fund the research of new and emerging vaccines that have already saved millions of lives and will save millions more in the next decade.  Both issues are critical to our long-term public health and economic prosperity.

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By Matthew Maenner

Early identification of autism spectrum disorders (ASD) continues to be an important public health objective.  Research has shown that ASD can be reliably identified in children by around 2 years of age, and public health campaigns promote the detection of developmental “early warning signs”  that may indicate ASD.  Despite these efforts, there is a considerable gap between the age ASD is detected in clinical research, and the age at which children are identified as having ASD in typical community settings.  Previous population-based studies have shown that the average age of ASD identification in the community is less than ideal (at 5.7 years), and there is little information about whether these “early warning signs” lead to earlier ASD identification in everyday practice.

Our new study uses data from the CDC Autism and Developmental Disabilities Monitoring (ADDM) Network to answer two questions about how ASD behavioral features are described by community professionals and whether these behaviors are associated with the age of ASD identification. The ADDM Network identified 2,757 8-year-old children that met the surveillance case definition for ASD (based on the DSM-IV-TR criteria) in 2006.

616 combination

First, we examined the frequency and patterns of diagnostic behaviors that lead to a child meeting the diagnostic criteria for ASD (based on the DSM-IV-TR).  There are many different ways to meet the diagnostic criteria for ASD.  For example, there are 616 combinations of the 12 behavioral criteria that fulfill the minimum number (6) and pattern needed for “Autistic Disorder” alone.  Although there was considerable variability between individuals with ASD, boys and girls had similar patterns of documented behaviors, as did black and white children overall.  Among the 2,757 children, the most commonly documented behaviors were impairments in emotional reciprocity (90%), delays in spoken language (89%), and impairments in the ability to hold a conversation (86%).  The least frequently documented behaviors were lack of sharing enjoyment or interests (49%) and lack of spontaneous or pretend play (57%).

Our second question was whether particular ASD behaviors (such as those highlighted by the CDC’s “Learn the Signs” campaign) are actually associated with earlier ASD identification in typical community settings.  We found that the both the total number and types of diagnostic behaviors in a child’s record were strongly associated with the age that they were identified as having ASD.  Children with all 12 behavioral symptoms were diagnosed at a median age of 3.8 years of age, compared to 8.2 years for children with only 7 of the 12 behaviors.  Additionally, children with documented impairments in nonverbal communication, pretend play, inflexible routines, or repetitive motor behaviors tended to have an earlier age at ASD identification than children who did have these features in their records.  Children with impairments in peer relations, conversational ability, or idiosyncratic speech were more likely to be identified as having ASD at a later age.

These findings give us a clearer understanding of how ASD diagnoses are made in the community, and help inform efforts to maximize early identification and intervention among children with ASDs.  It may be more difficult to detect ASD at an early age among children with fewer symptoms, or symptoms that are most apparent at later ages (such as getting along with peers or conversational ability). A recent national telephone survey reported an increase in ASD prevalence among young teenagers, and parents were more likely to describe their later-diagnosed children as having “mild” ASD.  It’s possible that increased awareness and intensified screening for ASD could lead to more individuals being identified at both earlier and later ages. Strategies to improve early ASD identification and interventions could benefit by considering the manner in which individuals may meet ASD criteria.

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AUTISM SCIENCE FOUNDATION and DANCE2BFIT

HOST ZUMBA MANIA on APRIL 6, 2013

Get Fit! Feel Fab! Raise Funds!

(April 1, 2013—New York, NY)  The Autism Science Foundation (ASF) and Dance2BFit will host their first annual Zumba Mania, a fun and fun-draising event for families and individuals affected by autism, on April 6, 2013 at Dance2BFit Studios in Mamaroneck.

The event will raise money to fund research to find the causes of autism and develop better treatments for children, teens and adults with autism. 1 in 88 children is currently diagnosed with an autism spectrum disorder, making it more common than childhood cancer, juvenile diabetes and pediatric AIDS combined.

Zumba Mania will run from 12:30pm – 3:30pm at Dance2BFit at 656 Van Ranst Place, Mamaroneck, NY.  Dance2BFit owner/instructor Gustavo Lopez, a Mamaroneck native and MHS graduate, will lead the zumba-ing. Dancers 12 and over, of all developmental and skill levels, are welcome to participate.

“Let’s face it; it’s stressful being the parent of a child with autism and zumba is a fabulous stress reliever,” said Alison Singer, president of the Autism Science Foundation. “Gustavo is the best instructor I’ve ever met. It’s just impossible not to be happy when you’re doing zumba with Gustavo.”

“Everyone can zumba,” said Lopez, who became a certified zumba instructor in 2009 and opened Dance2BFit in 2012. “Whatever your age, fitness level, or developmental level, zumba is a great workout and has great health benefits.”

Tickets are $25 and available online at http://asfzumbamania.eventbrite.com/. All advance ticket buyers will receive a free water bottle or size large t-shirt at the door. Tickets can be purchased at the door, space permitting.

Zumba is a dance fitness program created by Colombian dancer/choreographer Albert Perez. It involves dance and aerobic elements and incorporates hip-hop, samba, salsa, mambo and other dance moves.  According to Wikipedia, approximately 14 million people take weekly Zumba classes in over 140,000 locations across more than 150 countries.

100% of the proceeds from this event will benefit the Autism Science Foundation, a 501(c)(3) public charity. Its mission is to support autism research by providing funding to scientists and organizations conducting autism research. ASF also provides information about autism to the general public and serves to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism. ASF was founded by Scarsdale resident Alison Singer, who currently serves as president and Chief Zumba Officer.

To learn more about the Autism Science Foundation’s programs visit www.autismsciencefoundation.org.

 

–30–

Contact Information:

Casey Gold
Program Associate
Autism Science Foundation
212 391-3913
cgold@autismsciencefoundation.org

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Having fun with your child with autism is absolutely essential.  It’s a key to your emotional health, and to the relationship you’re building both with your autistic child and with your typically developing children.  Perhaps just as importantly, when you see your child with autism outside of the classroom or therapist’s office, you may just discover that (1) he or she has some talents you never noticed before and (2) your child with autism is actually a lot of fun to be with

Each Sunday in April we’ll featuring a guest post from Lisa Jo Rudy, the author of Get Out, Explore and Have Fun: How Families of Children with Autism and Asperger Syndrome Can Get the Most out of Community Activities.   She was the the About.com Guide to Autism for five years, and is now an inclusion consultant for community organizations and  museums, a writer for autismafter16.com, and (of course) the mom of Tom Cook, age 15, diagnosed with PDD-NOS.  Find her at www.authenticinclusion.org or at www.lisajorudy.com

Take TV to the Next Level!

Our kids are often sponges, who can learn almost anything by heart if it’s introduced through videos, TV or even music.  At first we were horrified by our son’s echolalia: he’d simply memorize entire scripts from his favorite TV shows, and recite them.  Later, though, we came to embrace certain TV shows and videos: they provided him with the tools he needed to engage with other kids, with the real world, and even with academics.

Like many parents, when our kids were small we allowed only “educational television.”  But kids watch an awful lot of shows on ad-heavy cable TV.  We didn’t want either of our kids getting seduced by ads, but even more particularly we didn’t want our son wandering around reciting ads for pop-tarts.  So we started borrowing videos and DVDs of kids’ shows from our library.  We could choose our time to watch together – and avoid the ads completely.

If you have a child who is mesmerized by TV, you may have started to use TV as an opportunity to get away for a little while.  Instead, try this:

  • Choose a TV show that your child really likes, and purchase a few toys (action figures, die-cast figures, etc.) that relate to the show.  Don’t worry too much if your child is “too old” for the show: grown ups still love the Muppets, and even grandparents love Disney
  • Choose a time to watch together, and talk about the show as you watch.  Ask your child questions; if he doesn’t reply instantly, try saying outrageous things that he knows are wrong (eg, Big Bird is purple with green stripes, isn’t he?).  Your child’s connection with and love of the show and characters may well prompt him to interact with you in new ways
  • Once the show is over, try using your new toys as puppets, acting out bits from the show.  Or use them in interactive play (Thomas the Tank Engine is ideal for this, since model train layouts are fabulous tools for sharing, creative thinking, role play, etc.)

You may find that your child is more verbally responsive to Thomas the Tank Engine or Elmo than he is to other human beings – or more fascinated by the tracks than by the people playing with them.  If that’s the case, you can build on that in the real world!  Your child might love attending puppet shows or going to TV-show oriented events (a Wiggles concert could be an ideal introduction to concerts and plays, even if your child is “too old” for the Wiggles).

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Having fun with your child with autism is absolutely essential.  It’s a key to your emotional health, and to the relationship you’re building both with your autistic child and with your typically developing children.  Perhaps just as importantly, when you see your child with autism outside of the classroom or therapist’s office, you may just discover that (1) he or she has some talents you never noticed before and (2) your child with autism is actually a lot of fun to be with

Each Sunday in April we’ll featuring a guest post from Lisa Jo Rudy, the author of Get Out, Explore and Have Fun: How Families of Children with Autism and Asperger Syndrome Can Get the Most out of Community Activities.   She was the the About.com Guide to Autism for five years, and is now an inclusion consultant for community organizations and  museums, a writer for autismafter16.com, and (of course) the mom of Tom Cook, age 15, diagnosed with PDD-NOS.  Find her at www.authenticinclusion.org or at www.lisajorudy.com.

Meet a Critter

My son’s first word was “cat.”  His best buddy to this day is his cat Dot, and his favorite recreational activity is bird watching.  Tom is not at all unusual among people with autism: many, in fact, are more comfortable with animals than with people.

Perhaps the best known example of an autistic adult with a strong connection to animals is Temple Grandin, who is a leader in the humane management of cattle.  But your child need not be a Ph.D. scientist to enjoy connecting with animals of all kinds.

If your child with autism is an animal fan, what’s the best way to help him pursue his interest in the community? A few possibilities include:

  • Horseback riding.  Hippotherapy or plain old riding lessons can open all kinds of doors for children with autism.  Riding builds physical strength and balance, communication skills, and even social skills when riding is done in a group setting or as part of an equestrian team.  Some people with autism become so engaged with their horse and stable that they volunteer and work for their local stable owner.
  • Bird Watching.  Alone or in a group, birdwatchers exercise their powers of observation, enjoy the natural world, and become part of a worldwide interest group.  In the long run, bird watching can even lead toward a career as a naturalist, nature educator, conservationist or scientist.
  • Animal Rescue Work.  The ASPCA and other animal rescue organizations are always looking for volunteer help. Children with autism can spend time with rescue animals, helping to socialize them or otherwise providing support to the rescue organization.
  • Visiting Zoos, Aquariums and Nature Centers.  While it can sometimes be tough to take a child with autism to a zoo or aquarium due to crowds and smells, nature centers are wide open and much less congested.  Some kids, though (like my son) are so motivated by their interest in the animals that they’re able and willing to overlook crowds, heat and smells to spend time with their favorite critter.
  • Animal Shows.  Whether you’re watching elegant Lippizaner horses from Vienna or local livestock, it can be fascinating to spend time at an animal or pet show. Kids with autism may not be able to spend a great deal of time at a show, due to sensory or behavior issues, so starting with low-cost options is probably the best choice.
  • Pet Stores.  Every mall has a pet store, and every pet store has at least a few adorable critters to observe.  Sometimes, pet store owners will even allow visitors to take a puppy into a small room where it’s possible to interact without risk to dog or child.

Whatever your child’s level of verbal ability or behavior, don’t pass by the possibilities provided by animals.  Non-verbal children are as capable as anyone of establishing a positive relationship with an animal . Your child may well surprise you with her compassion, connection and willingness to build a relationship with a non-human friend.

 

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Having fun with your child with autism is absolutely essential.  It’s a key to your emotional health, and to the relationship you’re building both with your autistic child and with your typically developing children.  Perhaps just as importantly, when you see your child with autism outside of the classroom or therapist’s office, you may just discover that (1) he or she has some talents you never noticed before and (2) your child with autism is actually a lot of fun to be with

Each Sunday in April we’ll featuring a guest post from Lisa Jo Rudy, the author of Get Out, Explore and Have Fun: How Families of Children with Autism and Asperger Syndrome Can Get the Most out of Community Activities.   She was the the About.com Guide to Autism for five years, and is now an inclusion consultant for community organizations and  museums, a writer for autismafter16.com, and (of course) the mom of Tom Cook, age 15, diagnosed with PDD-NOS.  Find her at www.authenticinclusion.org or at www.lisajorudy.com.

Take a Hike!

With so much on your plate, it can be hard to find the time or inclination to take your child with autism on a simple walk in the woods, a visit to a pond, or a trip to the beach.  Yet people with autism are often very much attracted to a connected with the natural world.  And, because there are few social or physical demands made by chirping birds, rippling brooks or cool green forests, you may find that your child calms down, relaxes, and enjoys himself.  You may just find that you do the same.

Start by choosing a nearby destination that is likely to be uncrowded and undemanding.  Before you go, take a trip on your own with a camera or video camera in hand, and create a preview of your plan.  Ideally, choose a location with a water attraction: a pond, lake, brook, river or beach.

Choose a day that’s not physically challenging (terribly hot, cold, or wet), and tell your child about your plan.  Show her your preview images or video, and discuss how long you’ll be out (no more than a couple of hours), what you’ll see and do, what snacks you’ll bring along, what you might see along the way, and so forth.

Then, get out and start enjoying.

Pay close attention to your child’s demeanor, her likes and dislikes, and her preferences.  Does she enjoy walking briskly for long distances, or get tired easily?  Is he bothered by bugs, or oblivious to them?  Is the woods a good choice, or would your child be happier in a meadow, a city park, or another type of natural setting?

What does your child notice?  Our son happens to be very interested in birds, and can spend a good deal of time watching birds on ponds, in marshes, and near harbors.  To make the experience more interesting and fun for all of us (his parents, sister, and family friends), we now go for nature walks and bring along binoculars and a field guide to birds of New England.

If there is water in your area, spend some time there.  Try skipping stones, or experimenting together by tossing in different types of objects (stones, pine cones, acorns, wood chips).  Is your child following your lead?  Can you follow his?


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Having fun with your child with autism is absolutely essential.  It’s a key to your emotional health, and to the relationship you’re building both with your autistic child and with your typically developing children.  Perhaps just as importantly, when you see your child with autism outside of the classroom or therapist’s office, you may just discover that (1) he or she has some talents you never noticed before and (2) your child with autism is actually a lot of fun to be with

Each Sunday in April we’ll featuring a guest post from Lisa Jo Rudy, the author of Get Out, Explore and Have Fun: How Families of Children with Autism and Asperger Syndrome Can Get the Most out of Community Activities.   She was the the About.com Guide to Autism for five years, and is now an inclusion consultant for community organizations and  museums, a writer for autismafter16.com, and (of course) the mom of Tom Cook, age 15, diagnosed with PDD-NOS.  Find her at www.authenticinclusion.org or at www.lisajorudy.com.

Get Splashy

You may feel it’s tough to enjoy sports with your autistic family member, but perhaps you haven’t considered swimming.  Kids with autism often enjoy water – and swimming may come very naturally.  The great thing about swimming is that it’s very versatile.  It’s easy to swim as a family – but it’s also possible to swim as part of a team, in a pool, lake or ocean, with other kids or on your own.

If you’re thinking about pool swimming, I can highly recommend the YMCA.  Most Y’s have pools, and most Y pools are intended for recreational swimming (meaning they’re warm enough to be comfortable).   Y’s offer daily passes, so you can give it a try without committing a fortune.  Many Y’s also offer special times for family swim, and even for special needs swim.  If your child turns out to be a natural swimmer, Y’s are always willing to include special needs kids in their lessons and teams.  If you enjoy swimming as a family, Y’s also offer financial aid so that you can join and come whenever and for as long as you like.

Start off shallow and easy: in the kiddie pool or in a pool where she can easily stand.  Make as few demands as possible; just enjoy floating around and having fun together.  If your child shows an interest, you can consider lessons or provide lessons yourself.   Of course it’s very important that your child build enough water skills to stay afloat – but excellent stroke skills and the ability to dive aren’t critically important.  If your child is really interested in going further with swimming, individual or group lessons may be in order. And if your child turns out to be a great swimmer, swim teams are a terrific option.

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Awareness of autism is no longer enough. We need to take action everyday in April. Click here to get a full size version of the  calender of to dos to take action for autism.

Follow all of ASF’s Autism Action Month Activities on Pinterest here where we’ll be pinning the to dos daily.

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