Archive

Archive for December, 2010

Are you finding that autism is increasing at the same/similar pace worldwide? I’ve read about pockets of increased autism in Silicon Valley, CA for example. Wondering if there’s data on a global rate of autism?

December 21, 2010 1 comment

“Got Questions?” is a new weekly feature on our blog to address the desire for scientific understanding in our community.  We received over 3000 responses when we asked what science questions were on your mind. We answered a few here and the Autism Speaks Science staff will address the other themes we received in this weekly post.

While we are seeing converging evidence in the research literature showing that autism prevalence is about 1% in developed countries such as the US and UK, there has yet to be published data on prevalence in low and middle income countries. Autism Speaks is actively trying to change that by funding epidemiologic research of autism prevalence in a number of low and middle income countries around the world including South Korea, Taiwan, Bangladesh, India, and South Africa. Conducting studies in countries where socio-cultural, environmental, and genetic factors may differ from those in the US can allow researchers to compare prevalence rates and examine how those factors may contribute to autism risk.

Autism in the News – 12.21.10

December 21, 2010 Leave a comment

Employers gain access to database to recruit workers with disabilities (United States Department of Labor)
The U.S. Department of Labor’s Office of Disability Employment Policy, in collaboration with the U.S. Department of Defense, today made available the 2011 Workforce Recruitment Program for College Students with Disabilities database. This resource is intended to assist federal and private-sector employers in identifying workers with disabilities. Read more.

Autistic Children Have More Trouble Searching for Items (My Health News Daily)
Children with autism may have a harder time than other kids searching for items, such as a particularfood in the grocery store, or keys inside a house, a new study suggests. Read more.

Hazleton Area teacher aide accused of abusing autistic student (Hazelton, Penn.)
Alex Shadie didn’t want to answer anymore questions. The boy – trapped within the limiting confines of autism and mental retardation – stuck his fingers in his ears and tucked his feet beneath his legs, sequestering himself from the rest of his 12th-grade special education class. Read more.

Exclusive school admits discrimination (Australia)
An exclusive Perth girls school has been forced to admit it discriminated against an autistic student who was denied a trained aide. Read more.

Manchester Supported Housing Boosted (UK)
Manchester has been granted £1.183 million to create a supported housing scheme for young adults on the autistic spectrum. Read more.

Advice for Parents of Newly Diagnosed Children

December 20, 2010 21 comments

We are so thankful for the outpouring of advice that has flooded in for us to share with the Autism Speaks Community. Who better to give advice than you all, the people that know best! We have heard from people on the autism spectrum, parents, siblings, teachers, therapists, and beyond. Your advice has been broken down into categories, and we will post accordingly!

Learn to celebrate every achievement, both large and small. –Liz

My advice is this: Loving persistence. There will be many, many times when you are trying so hard to connect with your child and you feel so frustrated because you believe that you are not getting through to them. Don’t stop. Your efforts in communication are not in vain, it is heard, it is cataloged in their mind, even though there is now outward sign of it. Be persistent, there will be moments that you will get feedback from a conversation that took place quite some time back, that’s how it clicked for us, the realization of “wow! He did hear me!” It’s worth every frustrating effort at those moments. Persistence is the key; you’re not being ignored, just not acknowledged… yet. –Thomas

Trust your instincts and your abilities to work with your child. Trust that you know your own child best and while the experts have a lot of training and can offer your child help, you still know your child best and you are going to be the most important therapist in your child’s life.

I wish I’d know that autism does not have to equal pain and suffering for parents and their children. It took me a few years to understand that autism can also equal joy and fun and laughter. –Kyle

Don’t be sad about what your child CAN’T do, really embrace all of the things he/she CAN DO! –Diana

Your child is not a diagnosis; they are always your child, a person, unique as any other child. –Courtney

As the parent of an autistic child, you don’t need to become an expert on Autism; you just need to become an expert on your child.  Watch them, study them, and learn what works and what doesn’t.  Then help those around them to understand. –Anita

It’s not about you. Put everything else, yourself, your pride, denial, any preconceived ideas, any fears of stigma aside and get to work as quickly as possible. Save your child with the same urgency as you would someone who is drowning. And then? Savor every small victory. As they begin to find themselves and you feel like you can breathe again, follow them wherever it is they take you and enjoy, enjoy, enjoy the journey. -Ken

These children have such a challenging time constructively processing feelings and emotions. My son at a young age started getting up at the end of movies and dancing during the credits, usually with what seemed to me like a large amount of emotion. This sparked an idea. When I would observe him having an emotional overload or getting frenzied I would turn on music and let him dance it out. He is 9 now and loves  to dance it out! We just make room and let him go. It is one of the small things that he has expressed to me that really helps him. –Ellen

1) Grief and self-pity are natural feelings when you first get the diagnosis – allow yourself to experience these emotions and forgive yourself for them. Once you get past it – and you will – focus all your energy on becoming the best advocate and teacher for your child.
2) Your child will be unique in the way he/she is motivated, responds, and takes in information – and you know them best. Share these “tips” with everyone who works with your child and work together to build upon your child’s unique qualities and strengths.  Always keep looking forward.
3) Appreciate your child for who he/she is including their unique personalities and perspectives. Accept them and take the time to fully connect with them.  He/she will bring so much joy to your life – more than you can. –Stacey

Establish a bond of trust between you and your child as soon as possible. -Clara

Remember not to get comfortable w/what you know…things are constantly changing & you must be prepared for many different obstacles to overcome!!! I wish you all the luck! & always try to have patience even when it’s so hard! –Brandye

The diagnosis does not change your child; it simply changes how you need to work with your child. Do not be angry at yourself or doctors, it does your child no good. Forget the past and the what ifs, look ahead and set the bar high for everyone, including your child. Keep hope alive!! -Amanda

Don’t fear the label.  The “diagnosis” will help you get the early intervention services that will change your world later on.  Don’t get hung up on the milestones your child is not meeting and find joy in your child each day. –Melissa

 

 

Combating Autism Reauthorization Act 2010 Introduced! Senators Dodd and Menendez Are Again Champions for Nation’s Autism Community

December 20, 2010 2 comments

We are pleased to announce that Senator Chris Dodd (CT), along with Senator Robert Menendez (NJ) introduced the Combating Autism Reauthorization Act (CARA) of 2010 (S.4044) late this past Friday. This new legislation would reauthorize the landmark Combating Autism Act of 2006 (CAA), significantly increasing both the depth and breadth of the federal response to the national and public health emergency posed by autism spectrum disorders (ASD).

As a result of the 2006 CAA, our community has made tremendous strides in federally-funded and directed research. It was the detailed surveillance by the Centers for Disease Control under the CAA that identified the increasing prevalence of autism: now a staggering 1 in every 110 American children – including 1 in 70 boys – is diagnosed with an ASD, making it the nation’s fastest-growing, serious developmental disorder.

Additional significant advances under the CAA have been realized, including:

  1. Improved ASD screening methods and universal screening recommendations;
  2. Development of effective early intervention methods for toddlers with autism;
  3. Creation of clinical networks aimed at improving physical and behavioral health;
  4. Identification of several autism susceptibility genes, leading to discoveries of new methods for diagnosis and treatments; and
  5. Development of best practice standards of care for co-morbid medical conditions including sleep and gastrointestinal disorders.

The Combating Autism Act of 2006 finally put us in the right direction toward formulating and implementing an effective research strategy to investigate the mysteries of autism. It is imperative that we continue to refine and intensify research into the potential causes of autism and determine ways we can improve the lives of people living with autism today, as well as their families.

Please support the CARA by taking action today! Your support on this issue is crucial in order to continue to address the public health crisis of autism and to help individuals with autism and their families across the country.

Here’s How You Can Help:

1) CALL AND THANK SENATORS DODD AND MENENDEZ! Call Senators Chris Dodd (CT) and Robert Menendez (NJ) and thank them for their leadership in introducing the Combating Autism Reauthorization Act.

Senator Dodd – (202) 224-2823
Senator Menendez – (202) 224-4744

2) CLICK HERE TO SEND AN EMAIL TO YOUR U.S. SENATORS AND URGE THEIR SUPPOR FOR CARA! Make sure to personalize the email and explain briefly why your Senators’ support for this bill would mean so much to your family.

3) SIGN UP TO STAY INFORMED! Check out www.AutismVotes.org/CARA for updated news and information on this bill and sign up to receive our email action alerts.

Autism in the News – 12.20.10

December 20, 2010 1 comment

Morris County, NJ: Technology helps autistic kids spread Christmas joy (Wharton, N.J.)
With an assistant supporting his hand, David Sierchio typed a special holiday greeting to cancer patients at St. Clare’s Hospital in Dover, said Lisa Romaine, the facilitated communication trainer at David’s school. Read more.

Preparing a child with Autism Spectrum Disorders for the holidays (The Brownsville Herald)
It was “Mario’s” first family Christmas in his new classroom. Mario was a beautiful little boy who became aggressive at times. However, Mario had grasped early on in his classroom that it was better to get rewards for good behavior. The boy didn’t like losing his choice time or the gummy bears he loved to eat. Read more.

Spirit of Santa is alive and well (Oakdale, N.Y.)
I had the pleasure of taking my 5-year-old son and my friend’s 18-year-old son, who has autism, to the Oakdale Mall to see Santa Claus. As they waited with the same sparkle in their eyes that only seeing Santa can bring, I waited, wondering what Santa would do as this 18-year-old young man stood before him with his Christmas list in hand. Read more.

School for ‘special-needs’ kids facing closure (Trinidad)
Although the Education Ministry has taken an interest in its plight, things are still very uncertain for the Agape Community College at Pro Queen Street, Arima. Read more.

Missing Falmouth boy, 10, found in closet (Falmouth, Mass.)
After another exhausting and traumatic search, 10-year-old Theodor Giosan was found early Saturday, hiding in a closet at a friend’s house. Read more.

What Does Autism Mean To You? – By Daniel Grieves

December 20, 2010 5 comments

Autism Speaks U, an initiative of Autism Speaks that works with college students across the country,  recently interviewed students about autism and the results were incredible. It showed that their involvement with Autism Speaks U is critical in spreading awareness on campus and in the community! Watch the video on What is Autism.

From this video, emerged our “What Does Autism Mean To You” series where college students share their perspective on autism. This post is by Daniel Grieves, a Senior at Towson University majoring in Strategic Public Relations under the feed of Mass Communication. Daniel has autism and is involved with the Center for Adults with Autism on campus and serves as a spokesperson for their organization.

I believe that autism is only a barrier. Students on the autism spectrum should not consider this barrier as a wall they cannot break down. They should consider it as something more easily penetrated.

What I mean is that a person with autism can overcome their shortcomings, no matter how large they may be. They are able to use their interests or goals to work beyond their problems and can do very well in certain types of subjects. An autistic student might do better with writing papers, working with computers, or solving math problems than many of his or her peers.

Daniel and fellow Towson students at the Walk Now for Autism Speaks event - photo courtesy of Karyn Bedell

People with autism still need support from people who care about them as well as services that are beneficial for them to achieve these goals. However, this is not easy to do especially with how most mass media forms treat the concept of autism and the fact that many people do not have a good understanding of what autism really is. By increasing awareness of what people on the spectrum are really like and what they are capable of, we can truly join together to take down that “barrier” that emotionally divides us people who have autism from people who don’t.

My advice for autistic students of all ages: Do not let your autism get the best of you. You can live your dreams as long as people are willing to help you get through and you try hard on all of your studies. If you think you will fail because of your autism, chances are you will fail. However, if you believe in succeeding and rising above your autism, you will have a better life.

Just remember my personal slogan: autism is only a disability if you make it a disability.

Happy Holidays!

If you are college student and would like your “What Does Autism Mean To You” story featured on the Autism Speaks blog, please send it to AutismSpeaksU@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.

Thanks to our Puzzlebuilder Scientist!

December 17, 2010 1 comment

Autism Speaks would like to express our gratitude to the amazing scientists who have participated in Puzzlebuilder!

A big thank you to:

Francis Collins M.D., Ph.D.

Craig Newshaffer Ph.D.

Ezra Susser M.C., Dr.P.H.

Roberto Tuchman M.D.

Stephen T. Warren Ph.D.

Eric Courchesne Ph.D.

For more information about Puzzlebuilder click here!


Autism in the News – Friday, 12.17.10

December 17, 2010 Leave a comment

Proximity to freeways increases autism risk, study finds (Los Angeles, Calif.)
Children born to mothers who live close to freeways have twice the risk of autism, researchers reported Thursday. The study, its authors say, adds to evidence suggesting that certain environmental exposures could play a role in causing the disorder in some children. Read more.

Autism Intervention Improves Social and Communication Skills in Toddlers (MedScape Today)
Early intervention aimed at teaching very young children with autism spectrum disorders how to interact socially can improve the core symptoms of the disorder, according to a new study published online December 8 in the Journal of Child Psychology and Psychiatry. Read more.

Elgin students step up to help autistic classmate (Green Camp ,Ohio)
Cataya Thornton, a behavioral technician who works with an autistic student at Elgin Junior High School, was originally seeking a few students who would be willing to interact with the student. Read more.

Elmer Smith: Students’ work with autistic kids has lasting impact (Philadelphia Daily News)
This is another in our series about people who see a need and work to meet it. If you know about people who make things happen, let me know and I will share their stories with our readers.Read more.

New guidance to improve health of adults with autism (UK)
Speaking at the National Autistic Society Conference, Mr Burstow will outline the publication of statutory guidance which sets a clear direction for how health and social care services should implement the autism strategy: `Fulfilling and rewarding lives´ and make improvements across areas such as. Read more.

New Trailblazer Awards fund innovative autism research

December 16, 2010 2 comments

Science advances in fits and starts. Part of Autism Speaks’ role as an advocacy and science funding organization is to find ways to identify and advance the science that could lead to improvements in the lives of those struggling with Autism Spectrum Disorders. New ideas bubble up frequently, however few mechanisms exist to support the exploration of unique and novel ideas.  The burden of evidence required to secure funding for a great idea is very high and often dissuades researchers from pushing for greater innovation and out-of-the-box thinking, resulting in research that is “safe” and moving at a pace that is slower than any of us would like.

To address this need, Autism Speaks has launched the Suzanne and Bob Wright Trailblazer Awards.  The Trailblazer Awards commemorate Autism Speaks’ fifth anniversary and honors our organization’s pioneering founders, Suzanne and Bob Wright.  We are grateful to the generous donors who have made contributions to support this special research innovation fund.

Trailblazer Awards provide seed funding to test out a novel idea or approach that has the potential to transform some aspect of autism research.  Importantly, applications for these awards are accepted and reviewed on a rolling basis so new ideas are evaluated quickly and those ripe for this mechanism meet with funding quickly.  The three funded projects summarized below will receive up to $100,000 for one year and each addresses a point of need as outlined in Autism Speaks’ Strategic Plan.

Mitochondria have been the focus of considerable buzz in autism research recently.  However, the reports on mitochondria’s control of cellular energy processes only scratch the surface of the complex web of cellular activities that these organelles orchestrate [see also mitochondrial and fever story]. Robert Naviaux, MD., Ph.D., (UCSD)  and his colleagues are grateful for the opportunity to pursue research on how mitochondrial metabolites may play a role in brain inflammation. “The Trailblazer award gives our lab the support to bring together 3 world-class groups to study the role of mitochondria in autism.  If successful, our results will provide the foundation for both fresh new therapies, but also for additional studies that clarify the role of mitochondria and the environment in the cause of autism,” said Naviaux.

The idea Dr. Naviaux brought to Autism Speaks focuses on a product of the mitochondria, called ATP, that is required for the development of brain cells and their communication with each other.  For cells to function properly, very specific quantities of ATP are required around the brain cells.   Naviaux will explore whether mitochondrial dysfunction, which can result in high concentrations of ATP in the space between cells, stimulates inflammation in the brain, and also alters connectivity between neurons.  Importantly, Dr. Naviaux and his colleagues will also test a compound that works against the effects of high concentrations of ATP as a potential therapy.  The effects of manipulating ATP and the pathways it tickles will be tested in a well-established mouse model for autism so the effects at both the cellular as well as behavior level can be compared before and after treatment. Read the grant abstract.

Phil Schwartz, Ph.D. (Children’s Hospital of Orange County) is building a unique resource that aims to bring personalized medical solutions to individuals living with autism.  The technology now exists to take a small sample of skin tissue and from that create stem cells that can be used to make personalized copies of any type of cell in the body.  Of interest to autism, of course, are brain cells. Schwartz and his colleagues have not only created neurons from skin cells, but they are also pioneering a method to incorporate them into living mouse brains so they can evaluate how these human-derived cells function as part of a circuit.  Dr. Schwartz is extremely enthusiastic about this research, saying “If this research is successful, we will be able to test, in animal model of autism based on human cells, novel therapeutic approaches and examine those putative therapies on bona fide human cells in an in vivo setting. This is about as close as we can get to clinical trials without actually using humans!”

Dr. Schwartz and his colleague, Dr. Diane O’Dowd, are aiming to build the largest bank of stem cells made from skin (called induced pluripotent stem cells) for autism research.  If these new techniques prove successful, there will be a unique new tool for individualizing autism research unlike any currently available today. Read the grant abstract.

Earlier this year, Antonio Persico, M.D. (Università Campus Bio-Medico di Roma) published results demonstrating that a class of viruses, called polyomaviruses, were found significantly more often in postmortem brain tissue of persons with ASD than in individuals with typical development.  The presence of these viruses presents a possible mechanism for the persistent immune activation seen in brain tissue of individuals with autism, originally reported by Vargas and colleagues in 2005.  How did the viruses get into the brains of these people and what does this mean?  Dr. Persico thinks that at least some forms of autism can be explained by the passing of a virus “vertically”, that is from parent to child, by incorporating itself into the genetic material in the sperm or egg.  The presence of this virus is unknown to the carrier without explicit testing (ie. these individuals do not appear to be acutely ill) and can remain quietly.

Polyomaviruses have been shown to cause autoimmune disorders, which have been correlated with the first degree relatives of individuals with autism. If an early and unresolved polyomavirus infection was present in children with autism, the researchers would expect to see evidence of persistent immune activation for these viruses outside the central nervous system. Indeed, children with autism had lower levels of certain types of polyomavirus in urine than did typically-developing children. These polyomaviruses result in common childhood infections and low levels of virus in children with autism is indirect evidence for immune activation against these specific viruses.  This clue led Dr. Persico and his colleagues to hypothesize that polyomavirus was likely passed from a parent and not acquired later in life.   “What is transmitted from parent to offspring may not be human DNA but rather a virus. This idea could explain high heritability as well as systemic signs and symptoms of ASD, such as overgrowth of the entire body, immune and biochemical abnormalities.  The translational potential of this project in terms of diagnostics, prevention and therapeutics is self-evident,” says Persico. Read the grant abstract.

Taken together, these new grants and the Trailblazer funding mechanism represent a bold new effort to attract and support the most innovative ideas that have the potential to transform our understanding of autism research.  We anxious await to hear from each of these researchers to learn what they discover.

Read a press release about all of the science grants announced by Autism Speaks in December 2010.

Reference:  Vargas DL, Nascimbene C, Krishnan C, Zimmerman AW, Pardo CA. Neuroglial activation and neuroinflammation in the brain of patients with autism. Ann Neurol. 2005 Jan;57(1):67-81. Erratum in: Ann Neurol. 2005 Feb;57(2):304.

Everyday Autism Miracles

December 16, 2010 20 comments

This guest post is by Shannon Penrod, the host of Everyday Autism Miracles.

I host a radio show called Everyday Autism Miracles – every week we do a live one hour show about positive things happening in the world of Autism.  Tomorrow I want to do a show showcasing real stories of HOPE from familes all over the spectrum – stories about what they’re grateful for, what the miracles are that are happening in their homes.  Part of this amazing journey through autism is appreciating the things that may seem small to others but are huge to us.

So I would love for people to write in short comments to tell us what they are celebrating, was Beth able to say a two word sentence for the first time?  Did Billy make great eye contact today?  Did Philllip pass his driving test, when 32 doctors said he would never be able to speak, let alone drive?  Whatever it is in each home. There is no mirace too small!  And then I will read as many of them on the air as I can manage.

The show airs live tomorrow (Friday) at 2pm EST 1pm Central, Noon Mountain Time and 11am Pacific on Toginet Radio.  People can listen at www.toginet.com and they can call in to the live show at 877.864.4869 during the  show if they want to comment on the air. A podcast of the show is available for free starting on Saturday on the showpage  www.toginet.com/shows/everydayautismmiracles and on iTunes by simply searching Everyday Autism Miracles.

Thank you, I am so looking forward to hearing what people have to say and sharing it with the world.

Leave comments on the Official Blog and Facebook. They will be passed along to Shannon! Thanks!!

 

Follow

Get every new post delivered to your Inbox.

Join 1,048 other followers

%d bloggers like this: