Autism Speaks Official Blog

Today’s “Got Questions?” answer is from Autism Speaks Chief Science Officer Geri Dawson, Ph.D.

Earlier this week, the LA Times ran a provocative article under the questioning headline above. It suggested that autism’s twentyfold increase over the last generation may be “more of a surge in diagnosis than in disease.” In fact, scientific evidence suggests that autism’s dramatic increase is only partially explained by improved screening and diagnosis.

Some of the clearest evidence of this increase comes from research documenting a 600 percent jump in autism caseload in California between 1992 and 2006. In related studies (here and here), Peter Bearman estimated that around 42 percent of the increase can be explained by changes in diagnostic methods and awareness with another 11 percent possibly due to increases in parental age at the time of conception (a known risk factor).

Taking into account all the factors that have been studied, this leaves approximately half of the increase due to still-unidentified factors. Through research, we’re increasing our understanding of these influences. For example, we now know that prematurity and extreme low-birth weight increase autism risk in babies. Certainly survival rates for premature and very low birth weight infants have increased considerably over the last twenty years.

While no single factor is likely to explain the marked increase in autism’s prevalence, researchers agree that a number of influences likely work together to determine the risk that a child will develop an autism spectrum disorder (ASD).

Bottom line: It is undeniable that more children are being diagnosed with ASD than ever before. The need for increased funding for autism science and services has never been greater. Autism costs society is a staggering $35 billion per year. And with more cases, that figure is likely to increase. Fortunately, there is clear evidence that earlier identification and intervention and supports throughout the lifespan can improve outcomes and quality of life.

If you are concerned about your child’s development, please see the “Learn the Signs” page of our website. If you are an adult struggling with issues that might be related to autism, please follow the hyperlinks to our resource page for adults and our page on Asperger Syndrome.

Got more questions? Send them to GotQuestions@autismspeaks.org. And join our next live webchat with Dr. Dawson and her co-host, Autism Speaks assistant vice president and head of medical research Joe Horrigan, MD on January 5^th. More information on their monthly webchats here.

This is a blog post by Dennis Debbaudt, the father of a young man with autism and founder of Autism Risk & Safety Management (link to www.autismriskmanagement.com)

Whether living on the autism spectrum or not, we’re all part of the human condition. As humans, we all need the essentials of everyday life. We all need to work, play and love. We need work that we take pride in. We do our best and reap the rewards of doing so. We need to take a break from work and have some fun. Sports, the arts, taking a walk in the park, playing a game, reading a book. We find activities we like and get a chance to smile and relax while doing so. We need to make friends among family, neighbors, classmates, co-workers and the people we meet along the road of life. And we need to feel safe and secure while pursuing these activities.

Addressing safety and risk can be accomplished by making a plan that meets our unique needs, then making that plan a part of our daily routines.

The ultimate plan will be yours to design with people that you love and trust. The goal? That everyone can work, have fun and friends in a safe and risk free environment!

This month, Autism Speaks has updated the Autism Safety Project and released new information on safety in the home, safety in the community, and sexual abuse and other forms of mistreatment. The Autism Safety Project also includes information for first responders and other professionals who may interact with children and adults with autism. Please consider the information here as a starting point for discussion!  Visit www.autismspeaks.org/safety to learn more!

Help Autism Speaks reach 1,000,000 fans and enter for your chance to win an HP Pavilion dm1z with a custom Autism Speaks logo!!

TO ENTER:

1. LIKE the Autism Speaks Facebook Page
2. SUBMIT your entry by filling out the entry form.
3. POST “I just entered the @Autism Speaks 1,000,000th Fan Notebook Sweepstakes”

See Official Contest Rules and Prize Details

Dana Fialco collaborated with her sister Tara, who has autism, and their parents to create the “Starabella” three-book audio series. Visit her online at www.starabella.com.

Every sibling relationship is unique, but having an autistic child in a family can impact the entire family dynamic. While much attention is paid to the challenges and difficulties faced by parents and siblings of autistic children, growing up with an autistic sibling also offers many advantages and hidden treasures that can help shape an individual’s life and character. Here are five benefits of growing up with an autistic sibling:

1. Perception. Having an autistic sibling means growing up alongside someone who sees the world in a unique, individual way – a way that is often different from the mainstream population. It also means living day-to-day with someone who behaves somewhat-to-very differently than the general population. The sibling without autism learns very early on that the world we live in is not black and white; there is not necessarily a right and wrong way to do all things. With solid parental guidance, siblings come to learn that individuality is not scary or wrong, but valued and beneficial to society. The neuro-typical siblings go into adult life with open minds and the ability to see the world from many views. Not only does this shape an individual with compassion, empathy, and acceptance of differences, but it also inspires innovation and creativity. The siblings can become real thinkers who see beyond face value, as well as diplomats who can navigate and reconcile conflicting points of view.

2. Perspective. Growing up with an autistic sibling means watching your sibling face each day with more courage and strength than most of us can fathom. Whether facing ridicule and cruelty from others or simply trying to get by in a world that was not built to accommodate their needs and way of thinking, kids with autism experience constant challenges. It’s difficult to witness this on a daily basis and not grow up with great perspective about what actually constitutes a problem. Granted, a pitfall of some siblings is to decide that their own real problems or feelings do not warrant attention or concern. However, with maturity and proper guidance from caring adults, the siblings can grow into adults who can balance experiencing their feelings with not overreacting to trivialities or falling prey to self-pity. This perspective allows them to remain calm during difficult situations, and to be thoughtful rather than reactionary.

3. Leadership. Siblings of autistic children often have to mature very early – arguably, earlier than should be required. By necessity, siblings often must assist their parents in helping, providing care, and teaching. These households can be chaotic, and siblings must develop a real inner strength to deal with the chaos, emotions, and frequent uncertainty. In families, siblings often collaborate – working on projects, carrying out chores, or playing together. Siblings often see each other’s capabilities and way of thinking from a different perspective than their parents or teachers. Whether older or younger, the non-autistic siblings naturally gravitate to leadership roles in the sibling relationship. They learn to stand up for their sibling to others, and advocate for their sibling’s potential to be seen and met with proper challenges for growth and success. Whereas this can present difficulty for some, in the end, it shapes strong adults with tremendous potential for leadership. They can grow into leaders who are comfortable navigating uncertainty and still delivering results; they become comfortable leading and motivating others, and they learn to see and foster the potential in those they lead. They see differences in working styles and ways of thinking as welcome attributes rather than frightening, difficult to manage, or unacceptable. The siblings become strong, compassionate leaders who are natural innovators, protectors, and advocates.

4. Courage. By necessity, growing up with an autistic sibling teaches a child to have the courage to stand out. Venturing into society with someone who does not necessarily conform or can have unfiltered reactions means there will be moments when the entire family stands out, whether they like it or not. For children and teenagers this can sometimes cause embarrassment. However, it is an important part of their development that will yield rewards their entire lives. It helps the siblings learn to be themselves and express their ideas, and not be swayed by the crowd. It helps them see public perception for what it is, and to know when to take or leave an outside judgment or opinion. A lifetime of developing strength and compassion provides the courage and pride to face the world head-on.

5. Creativity. Many of the other listed benefits have underlying tones of creativity, or produce creativity as a byproduct of the other attributes achieved. Siblings often have a unique way of communicating – sometimes even developing a shorthand or symbiotic relationship. Learning to communicate effectively with an autistic sibling takes a great deal of creativity. Autism manifests differently in each person, and there is a broad spectrum. However, communication and social awareness are almost always affected in some way. Siblings grow up learning how to organically communicate, reach, and connect with their sibling. Because those with autism often have unique and varied ways of thinking and seeing the world, their neuro-typical siblings often benefit from a very creative point of view. Simply being so intimately engaged with a person lacking the tools to benefit from a very creative point of view. Simply being so intimately engaged with a person lacking the tools to temper individuality through conformity stretches the mind and creativity of a sibling. Many people with autism also have some extraordinary abilities. Not all are creative, but some do have creative talent, be it visual arts, music, writing, or simply expressing a worldview that is unique and insightful. An added benefit to creativity is when a sibling grows up in a house filled with this art. Even a non-creative interest exposes the siblings to aspects of the world that they would not normally delve into, and can feed creativity. If the siblings happens to share a creative interest, both or all the siblings’ creativity and awareness grows together. Some siblings even apply their creativity to solving scientific and sociological puzzles, including the puzzle of autism.

Of course, all family dynamics and ways of growing up present their own challenges as well as benefits. Siblings of autistic children naturally develop the tools to see the challenges thrown their way in life for the gifts they can be. They develop the strength and creativity to use those gifts towards compassionate, collaborative, individualized success.

“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.

Autism And Blinking Patterns Examined In New Study (The Huffington Post)
Eyes may be the key to the soul, but the act of opening and closing them — and the rate at which children do it — may provide clues to the mind. According to a new study, “blinking patterns” might contain new insights into how children with autism think. Read more.

New MIT center to fund autism research (The Boston Globe)
A new center at the Massachusetts Institute of Technology will focus on unraveling the neuroscience behind social behaviors, helping to push forward research and, the scientists hope, to advance diagnosis and treatment of autism spectrum disorders. Read more.

A mother writes asks for help for autistic son and a daughter (The Boston Globe)
Having a child with a neurological disability can be so overwhelming that all other day-to-day aspects of living fall by the wayside. That is the case for a single mother who recently wrote to Globe Santa to ask for gifts for her 11-year-old daughter and her 9-year-old son this holiday season. Read more.

Families cling to hope of autism ‘recovery’ (The Los Angeles Times)An autism treatment called applied behavior analysis, or ABA, has wide support and has grown into a profitable business. It has its limits, though, and there are gaps in the science. Read more.

Author Raises Autism Awareness With “Chicken Boy” (Bloomfield Patch)
Each and every Wednesday night, Gregory G. Allen engages in the same cherished ritual with his godson, Gabriel. They bond over a trip to T.G.I. Friday’s, where the youngster faithfully orders his favorite foods: chicken fingers and french fries, side of ketchup, followed by a slice of red velvet cake. Read more. 

Today we launched a consolidated grant search engine on autismspeaks.org that contains all of the research and community grants that we have funded since 2006. This comprehensive search gives our community and staff a complete picture of the impact that Autism Speaks has on the community and around the world.

Here are the top 6 features that this updated site includes:

1. Both Science and Family Services grants, with icons to distinguish them
2. Attachments! Contributors to the database can now add attachments describing the outcomes of the grants. This will include research papers and/or links to publications available online.
3. Advanced search that allows for multiple terms and criteria.
4. Customized search and export for offline and presentation use
5. Behind the scenes goodness: Including a “data bridge” to keep the grants up to date

You can find all this goodness here.

Autism America Radio welcomes special guests,  Los Angeles Times Reporter- Alan Zarembo and Education Lawyer and advocate- Valerie Vanaman.  Join hosts Matthew Asner and Nick Geber for two hours of talk and interviews this Saturday 6:00 to 8:00 PM ET on Sirius/XM Family Talk Channel 131! 

People wishing to participate should call 800-679-7650 During the show or Tweet their questions to @Autismamericar. Listen online at http://www.live365.com/stations/autismamerica?play or as a podcast on iTunes! You can also visit Autism America Radio on Facebook!

The Patient Protection and Affordable Care Act (ACA) signed into law in 2010 by President Obama enables parents to carry their children on their health insurance policies up to age 26. How will this impact children with autism? Autism Speaks Government Relations intern Sara Baldwin offers an assessment.

As children with autism become young adults, many parents have concerns and confusion about their child’s health insurance coverage. The ACA will further change the landscape as its provisions are implemented over the next few years.

The age at which adults living with autism are no longer considered a “dependent” on their parents’ health insurance policy can have significant impact. Traditionally, once children reached the age of 19 they were no longer considered a “dependent” on their parents’ health insurance plan and coverage terminated. The only exception was for children who remained full-time students. For children with autism, though, traditional post-secondary education often might not be their next step, thus eliminating their ability to remain on their parents’ policy.

The ACA provides for young adults in any state to be covered on their parents’ health insurance until the age of 26 – and there is no requirement that the child remain in school or even live at home. But as the language of the ACA continues to be interpreted and applied, it is still important for parents to know what is available in their home state.

Prior to the enactment of the ACA in 2010, many states had already recognized the need to cover young adults and amended their laws to require that state-regulated health insurance plans cover dependents past age 19. While the ACA is a great advancement in addressing uninsured young adults – particularly those struggling with intellectual disabilities such as autism – some states provide more favorable coverage. Under the ACA, states are required only to change their laws to be in line with its requirements. Put another way – the ACA represents the minimum of what states must provide, but states can still provide coverage that is more favorable.

While most state laws establish a top age that is equal to, or slightly younger than, the ACA’s requirement, at least four states have more favorable coverage (with some restrictions):

Policy owners should be aware that state regulations apply only to fully funded insurance plans. If your company has a self-funded insurance policy, dependent coverage requirements will be governed by the ACA rather than state law. If you are unsure which type of policy your employer provides, you should contact your human resources department.

Disabled Dependents

Nearly all state laws allow dependents to remain covered indefinitely as long as they remain mentally or physically dependent, regardless of age. When looking into your state laws, you may find one of the following statements:

1.       The most common version, found in over 30 states, includes something similar to the following:
“…attainment of limiting age shall not operate to terminate the coverage of the child if at such date the child is and continues thereafter to be both (1) incapable of self-sustaining employment by reason of mental or physical handicap, as certified by the child’s physician… and (2) chiefly dependent upon such employee or member for support and maintenance.”
See, e.g., Con. Gen .Stat. Ann. § 38a-515.

2.       Other states include the following language within the statutory definition of a “dependent:”
“…an unmarried child of any age who is medically certified as disabled and dependent upon the parent.”
See, e.g., Colo. Rev. Stat. Ann. § 10-16-102.

3.       Yet another simpler (and vaguer)version lists the limiting age and requirements for young adults and then says that coverage will also be extended to:
“…any other person dependent upon the policyholder.”
See, e.g., Del. Code Ann. Tit. 18, § 3303.

To whom, and how far, this “any other person” language extends is unclear. And despite the inclusion of “disabled dependent” language, the statutes alone do not tell parents how this language is interpreted or how the polices are implemented.

 If you have questions about coverage of your adult child with autism, contact your human resources department.  If they cannot answer your questions or if you lack confidence in their answers, call your state department of insurance.

We are thrilled to announced that Theta Delta Chi, one of the nation’s oldest college fraternities, has selected Autism Speaks as its national official philanthropy.  The partnership between Autism Speaks and Theta Delta Chi will engage the thirty-three Theta Delta Chi chapters on college campuses nationwide in autism awareness, advocacy and fundraising efforts as part of our Autism Speaks U college program. Autism Speaks U is an initiative that engages college students in their efforts to support Autism Speaks.  Since its inception in 2008, Autism Speaks U events have raised over $1 million for Autism Speaks research and advocacy efforts. There are more than 45 Autism Speaks U chapters on college campuses nationwide.

We are extremely grateful to Theta Delta Chi for partnering with Autism Speaks.  With the support of its members, autism awareness will continue to grow on college campuses throughout the country.  Theta Delta Chi is the second collegiate society to partner with Autism Speaks through its Autism Speaks U program. In 2009, Alpha Xi Delta sorority selected Autism Speaks as its national philanthropic partner. Since the partnership was established, Alpha Xi Delta’s 120 collegiate chapters have raised over $625,000 for Autism Speaks.

For more information, click here to read the press release.

Buckley autism centre closure bid prompts anger (UK)
A specialist centre for children with autism is set to close in Flintshire despite protests from parents. Earlier this year, more than 300 people joined a online campaign to retain Buckley’s Applied Behavioural Analysis Unit at Westwood primary school. Read more.

Children with autism thrive in program founded by teachers (Star News Online)
When you walk into the OASIS center on Kerr Avenue, you hear children playing games and laughing. Just a bunch of typical elementary school kids. They let each other take turns, jump up and down, shout with glee when they win and smile when they don’t. Yes, typical kids. With one difference: They have autism. Read more.

Autistic man focuses on future with camera (STL Today)
Daniel Talbot is thinking of upgrading from his small digital camera to a bigger one. ”This takes good photographs, but it might be time for something new,” said Talbot, 25, sitting at his kitchen table and holding it up. “I haven’t made up my mind, yet.” Read more.

Autism battle: At last, west to have P-12 school (Brimbank Weekly)
An autism school catering for children up to year 12 in Melbourne’s west has been approved by the state government. The P-12 school will be located next to Laverton P-12 College, Education Minister Martin Dixon announced today. Read more.

New Jersey Independent Bookstore Honored as Role Model for Disability Employment and Training (Maplewood, N.J.)
[words] Bookstore in Maplewood, N.J., was recently recognized as a role model for Corporate America because of its initiative to help the disabled community, the largest and fastest growing minority segment today. Read more.