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Archive for May, 2011

Dining Out and Autism

May 31, 2011 71 comments

Welcome to this installment of ‘Topic of the Week.’ These topics stem from submissions from our community. If there is anything in particular that you would like to see featured, please contact us!

The idea of dining out for a person with autism is often daunting. How do you prepare yourself or your child for going to a restaurant? Can you share some positive/negative dining experiences? What strategies do you employ to ensure the best experience possible for you and your family?


Autism in the News – 05.31.11

Study Suggests Special MRI Might Help Diagnose Autism (HealthDay)
At the moment, a diagnosis of autism is based on subjective evaluations, but a new way of using MRI might be an objective way of spotting the disorder, Columbia University researchers report. Read more.

Finish line gives kids with Autism new start (Australia)
Raising a child with autism is a real challenge for many Queensland families. Early intervention services can make a real difference to the quality of life of children with autism and their families. Read more.

Autistic children may need lifelong financial plan (Columbus, Ind.)
Moms and dads plan for family trips, college and weddings, but life sometimes throws a curve called autism. And it’s hitting more and more families. An average of one in 110 children in the United States has an autism spectrum disorder. Read more.

Driving with Autism (St. Louis Park Patch)
I have finished my tests and graduated. I am done with high school. So what’s next? I am going to be doing college classes during the summer, but I have a bigger goal in mind. I am going to get my driver’s license. Read more.

Education reversal over funding for autistic boy (The Age)
Six-year-old arraville boy Oscar French was denied funding for an integration aide at his mainstream school because he knew too many big words, such as ”flexible.” Read more.

Autism in the News – 05.27.11

May 27, 2011 1 comment

Rye Brook mom, son press for autism services, awareness (Rye Brook, N.Y.)
As the mother of an autistic son, Doris Perez aims high in her efforts to raise awareness — as high as the Empire StateBuilding. Read more.

Leaving (an Adult) Child for the First Time (The New York Times)
Liane Kupferberg Carter is leaving for Paris this afternoon. Probably. Almost definitely. Read more.

Complexities of Autism Extend to Its Treatment (HealthDay News)
Parents of children with autism often find themselves struggling to make sense of their child’s behavior. Read more.

Living With a Child With Autism (HealthDay News)
Julie Wismann knew her young daughter was troubled. The girl had been diagnosed with epilepsy at age 1 and put on medication, said Wismann, 34, of Centennial, Colo. But then the youngster, Kara Reno, began losing her words. Read more.

Ed Husar: Kathy Schwartz bids tearful farewell to special education career (Whig.com)
Kathy Schwartz has spent 29 of the last 38 years working with special education students in the Quincy School District’s early childhood program. 
Much of Schwartz’s effort was focused on kids with autism — the developmental disorder that affects social and communication skills. Read more.





The Latson Case in Virginia: A Danger Signal That We Can’t Ignore

May 27, 2011 57 comments

Teresa Champion is an attorney admitted to the bar in Kentucky and Washington State.   She has two children; Sydney and James, who has a diagnosis of autism.  She is a long time civic and community activist, who works with the Fairfax Autism Network (FAN) and the Virginia Ability Alliance (VAA). Champion is a member of the Council of Parent Attorneys and Advocates (COPAA). Currently, Teresa is volunteering for the Virginia Autism Project (VAP) as the Northern Virginia Regional Director.  

The Cry for Help:

I sat in the courtroom and sobbed.  I had never met this young man and I had just met his mother in person that morning.  Even though we were essentially strangers, I viscerally felt the anxiety and fear of this family.  Reginald “Neli” Latson has Asperger’s Syndrome, an Autism Spectrum Disorder (ASD) and was on trial for injuring a school resource officer.  I too have an 18-year old son with autism.

The evidence showed that Neli, in resisting arrest, had severely injured the officer, but only after an interchange that magnified his inability to process verbal input and significantly increased his sense of uncertainty and apprehension.  The officer had been alerted to look for an African American teenage male carrying a gun.  Neli had been sitting waiting for the library to open.  He had no gun.  Although initially cooperative when the officer approached him, Neli stopped cooperating when the police officer asked him for his name.  He had done nothing wrong.  The “rule,” he knew, was that police officers went after people who had done something wrong.  Since Neli knew he had not done anything wrong, to his concrete way of thinking, he didn’t need to obey the police officer.  So he didn’t comply with the police officer’s request that he identify himself and attempted to leave the scene.  It is undisputed that Neli did not possess a gun or any other weapon.  Until he encountered the officer, he had committed no crime.  The basis for the arrest was a county ordinance that makes it a crime to refuse to identify yourself in response to a request from a law enforcement officer.

Neli was found guilty of charges associated with an assault and the jury recommended a sentence of 10 ½ years.  In Virginia, the jury recommends a sentence and the judge imposes the sentence at a later date.  In Virginia, there is no parole.  He will serve every day of whatever sentence he is given.

Many ASD families who read about this case thought, “that could be my son/daughter.”  If the autism community doesn’t do something quickly, similar outcomes could face many more of our young adults.

How do we stop this from happening again?  We must educate and train the community at large about autism.  How do we help this young man and his family? Try to explain autism to the Judge and ask for treatment not punishment.

Helping the community at large:

During the pre-trial interviews of prospective jury members only one person was aware of Asperger’s Syndrome.  He did not make it into the jury box.  When Neli was being interviewed at the police station after the tragic event, he was asked if he had any sort of disability.  When he said he had Asperger’s, the police officer interviewing him said, “What’s that?”  That is too late.  Although the injured officer in this case has a disabled son, he didn’t recognize someone with an ASD when he encountered him, nor was he trained to deal with the likely consequences of Neli’s disability.

As this population with an ASD ages and those individuals, like Neli, who didn’t have access to adequate treatment and therapy become adults, we must explain autism to the community at large.  Just like we had to do for our children’s teachers, caregivers, and family members when they were younger.  We worked for acceptance and training everywhere they went.

We have to be one step ahead of our adults with an ASD in the community.  We must talk honestly about the hallmarks of someone with an ASD and also educate our young adults on how to interact with someone in law enforcement. We have to show our disabled adults how to be interviewed and possibly arrested by the police.  Statistics show they are seven times more likely to encounter law enforcement than the general population.[1]

The legal system is not equipped to deal with individuals that can’t respond appropriately and/or control their response because of a disability.  We have a lot of work to do to educate and train the judicial and legal systems and the community at large.

Helping Neli and his family:

Helping Neli and his family is a more complicated issue.  Funding supports in the community so that someone can be supported and live with a disability safely is a long-range goal that can’t be ignored.  A more immediate goal is let this 19- year old disabled man (who likes to read Goosebumps books) and his family know that he is treasured and they are cared about.  Most importantly – support the attorneys and professionals working to present a sentencing report to the judge that will explain the side of autism that the jury never got a chance to hear and understand.  He should be given rehabilitation and treatment not further incarceration.  Neli has been in jail since this incident happened in May, 2010 but he has been trapped inside the cell of autism his whole life.

Pay attention to this case and pray.

The Autism Safety Project provides First Responders with information and guidelines for communicating with individuals with Autism Spectrum Disorder (ASD) in emergency situations.

Here is a letter submitted to Judge Sharp from Gary Mayerson, the Director of Autism Speaks Federal Appeals Project.


[1]  http://www.autismriskmanagement.com/,  Dennis Debbaudt citing FBI Law Enforcement Bulletin,  April 2001.

 

 

Don’t Let the Sun Go Down on Combating Autism Act

May 26, 2011 5 comments

The landmark Combating Autism Act (CAA), signed into law by President George W. Bush in 2006, gave all of us in the autism community a foundation on which to build. But key provisions in the law are scheduled to sunset September 30. Unless Congress acts quickly to renew the law, the funding we need to continue vital research will vanish. The progress we have made over the past five years will grind to a halt. There simply is no more important or immediate issue for us today at the national level.

Autism impacts not just the people with the disorder themselves, but their immediate families as well as taxpayers who will have to pay higher taxes to care for people with autism if treatments and therapies are not developed to help them live independent lives. Fortunately, bills have just been introduced in both houses of Congress – the Combating Autism Reauthorization Act of 2011 (CARA) – to continue the momentum we have built since 2006. These bills have the support of both political parties, a rarity in Washington these days, but need the support of the entire autism community. The original 2006 act passed Congress with near unanimous support – it is time again to make sure your voice is heard with your Senators and Congressmen. Sign up to receive alerts from Autism Votes.

Why was CAA so important? For the first time, the U.S. government recognized the specific impact autism spectrum disorder (ASD) has on a significantly large portion of the American population. Nearly $1 billion in federal investment was authorized for biomedical and treatment research for autism. The law also required the development of a comprehensive, strategic plan requiring all federal agencies that have anything to do with autism, whether in health, education, or social services, to coordinate their efforts and, for the first time, communicate with each other through the Interagency Autism Coordinating Committee (IACC). This is important because it is easy for each agency to work in isolation without ever realizing how their work or study could impact another agency’s efforts.

One billion dollars is an extraordinary amount of money. But the fact that one in 110 children, including one in every 70 boys, is now diagnosed with an ASD is also extraordinary, an alarming testament to the growing crisis of autism in the U.S. It is easy to understand why our community is coming back to Congress to reauthorize this legislation for vital research. The newly introduced CARA bills would continue federal funding at current levels for another three years. The need for even more funding is obvious; but the concerns within Congress over the size of the federal deficit must be respected if we are to move forward.

The CAA has given us the foundation on which to continue to build. Some of the bricks in that foundation include:

  • Development of standards of care for medical and behavioral health, clinician guidelines and training
  • New treatments for commonly associated medical conditions, such as sleep and gastrointestinal disorders
  • Improved methods for autism screening and recommendation for universal screenings at well baby check-ups
  • Development of effective early intervention methods for toddlers
  • Detailed surveillance by the federal Centers for Disease Control and Prevention (CDC) of the increasing prevalence of ASD
  • Identification of several autism susceptibility genes leading to drug discovery and earlier detection in infants at risk for ASD

And what do we lose if CAA is not renewed?

  • A requirement holding the federal government accountable for its efforts to improve the lives of persons with ASDs through research
  • Two intervention networks – physical and behavioral health – that support the development of clinical care practice guidelines, clinical training and research on effective treatments
  • Augmented support for the University Centers of Excellence in Developmental Disability (UCEDD) to promote training and dissemination of best practices in ASD screening, diagnosis and treatment
  • The mandate requiring that a strategic plan for autism be updated annually
  • A shutdown of the IACC – the special team that has come together to share any and every advance that has emerged to help combat autism

One day, we will put a roof on autism – find the causes, effective treatments and, ultimately, answers for all those seeking a cure.

In the coming months we will need your help to contact your United States Members of Congress, both in the House and the Senate. Please sign up to receive alerts from Autism Votes. We make it easy for everyone to get involved. To speak your mind. To tell legislators what you want. To make Congress listen.

The FedEx 400 Benefiting Autism Speaks delivers

May 26, 2011 1 comment

It’s been a couple of weeks since the “FedEx 400 Benefiting Autism Speaks,” but we’re still feeling the love from our friends in NASCAR community.  The race weekend, May 13-15, was an overwhelming success thanks to our partners at FedEx, Dover International Speedway and Dollar General.  Here’s a recap in case you missed all of the excitement on TV.

On Friday, May 13, Autism Speaks rolled into Dover International Speedway ready to raise funds and spread autism awareness.  Autism Speaks President Mark Roithmayr kicked off the day with a live interview on the SiriusXM radio show “The Morning Drive.”  Roithmayr and host Mike Bagley discussed Sunday’s Sprint Series race and the ways NASCAR fans can help raise autism awareness.  Later in the day, Mark was joined by FedEx No. 11 Toyota driver Denny Hamlin for a press conference at the speedway’s media center.  In addition to featuring a special Autism Speaks puzzle piece logo schemed car, FedEx would donate $100,000 Autism Speaks if Hamlin won the race.  Following the press conference,  Red Horse Racing Competition Director Terry Cook treated everyone to a tour of the truck series team’s trailer.  Terry and his wife are wonderful autism advocates within NASCAR community.  A special thanks to Terry and the Red Horse Racing team for featuring theAutism Speaks puzzle piece logo on the hood of their No. 17 truck.

Saturday began with another Mark Roithmayr radio interview on SiriusXM radio, followed by a check presentation ceremony with our friends at Dollar General prior to the start of the Nationwide Series race.  Rick Dreiling, CEO of Dollar General, Reed Sorenson, driver of the Dollar General No. 32 Chevy and his crew chief Trent Owens, who is a parent and autism advocate, presented Autism Speaks with a check for an amazing $1,193,256.  In an effort to raise funds for the autism community, in April, Dollar General partnered with Autism Speaks for a month long fundraising campaign and Reed’s No. 32 Chevy was adorned with theAutism Speaks puzzle piece logo, helping to spread autism awareness from racetrack-to-racetrack throughout Autism Awareness Month.  Late Saturday afternoon, Jacob Boenizi, a special guest of FedEx and Autism Speaks arrived in Dover.  After his mom posted o nAutism Speaks’ Facebook page that Jacob, an 11 year old on the spectrum from Mesa, AZ, was a huge NASCAR and Denny Hamlin fan, he was invited by FedEx to serve as the Grand Marshal for Sunday’s Sprint Series race.

Sunday…Sunday…Sunday. Sprint Cup Series race day!  All of the families who were guests of Autism Speaks received a special treat courtesy of FedEx.  They met with driver Denny Hamlin in the FedEx suite prior to the start of the race. Denny took time out of his busy schedule to sign autographs and take pictures with all of the kids, including his biggest fan, Jacob.  In addition to hanging out with Denny, Jacob went on a tour of pit row and met NFL legend Joe Gibbs.  Shortly thereafter, Denny joined Mark Roithmayr for a live pre-race interview on the SPEED channel to talk about NASCAR’s commitment to autism awareness.  While walking back from the interview, it was wonderful to see almost every car lined up in pit row featuring an Autism Speaks puzzle piece logo  —  a heartfelt show of support from the NASCAR community.

Time for the start of the big race.  Jacob joined Mark onstage for driver the introductions, where they met NASCAR hall of famer Bobby Allison, and greeted the likes of Jimmie Johnson, Jeff Gordon and Dale Earnhardt Jr.  Denny Hamlin also presented Autism Speaks with a check for $50,000 from FedEx to goes towards vital research and advocacy initiatives.  As grand marshal, Jacob was given the special honor of announcing “gentleman start your engines” prior to the start of the race.  Standing before thousands of fans and on live national television, the young fan from Mesa nailed it, spurring a huge ovation from crowd.  It was truly an inspiring moment for everyone in attendance to hear Jacob says those words with such determination and confidence. He was the perfect ambassador for the autism community. Be sure to see for yourself:

Although Denny Hamlin didn’t win (Matt Kenseth finished first), the Sprint Cup Series race was a huge success thanks to FedEx, Dover International Speedway and all of our friends at NASCAR who worked hard throughout the weekend to bring attention to the needs of families and individuals affected by autism.  Thanks to everyone’s efforts, a message of understanding and hope prevailed in Doverand was broadcasted by FOX on televisions across the country.  In addition, a young NASCAR fan on the spectrum was given the experience of a lifetime.  You couldn’t ask for a better finish when the checkered flag finally waved, signaling the end of a memorable weekend.

We snapped plenty of pictures from the FedEx 400 Benefiting Autism Speaks. To view them, visit the Autism Speaks Facebook page.

Early maternal prenatal vitamin intake associated with reduced risk for autism

May 26, 2011 23 comments

This post is by Guest Blogger Rebecca Schmidt, Ph.D., Assistant Professor, Department of Public Health Sciences, UC Davis and first author on the research described below.

UC Davis researchers conducted a study comparing children with autism to children without autism, all aged 24-60 months, to see whether their mothers differed in terms of taking prenatal vitamin supplements before and during pregnancy. Combined effects of maternal vitamin intake and genotypes affecting a key metabolic pathway known as one-carbon metabolism were also examined.

In this retrospective study, mothers of  children with autism were significantly less likely than those of typically developing children to report having taken prenatal vitamins during the three months before and the first month of pregnancy. Prenatal supplement use was similar across the other months of pregnancy. Maternal education and the child’s birth year were accounted for; however, because the mothers were asked about their vitamin use years after their pregnancy, and after their child’s developmental status was known, recall bias could have influenced the results.

The researchers postulate that folic acid, the synthetic form of folate or vitamin B9, and the other B vitamins in prenatal supplements, are probably protecting against deficits in early fetal brain development. Folate is known to be critical for proper neurodevelopment and studies have found that supplemental folic acid has the potential to prevent up to 70 percent of neural tube defects.

Interaction effects were also observed between periconceptional prenatal vitamin intake and maternal and child genotypes. When a mother did not report taking prenatal vitamins and she or her child had genotypes associated with less efficient folate-dependent one-carbon metabolism, the child was at much greater risk for autism. These findings demonstrate gene/environment interactions in autism.

Maternal genes involved in significant interaction effects included the well-studied methylenetetrahydrofolate reductase (MTHFR) folate metabolism gene and vitamin B6-dependent cystathionine-beta-synthase (CBS), which is an enzyme involved in metabolizing protein building-blocks that contain sulfur. The child’s catechol-O-methyltransferase (COMT) gene was associated with more than seven times the risk for autism when in combination with no maternal periconceptional prenatal vitamin intake, compared to children with other genotypes whose mothers did report periconceptional prenatal vitamin intake. The COMT enzyme, responsible for the degradation of the neurotransmitter dopamine and well-known for its association with schizophrenia, is active during early neurodevelopment. Structural and functional brain differences have been described across COMT genotypes, particularly in the hippocampus and prefrontal cortex, regions previously shown to be affected in individuals with autism.

These findings are the first to suggest a concrete step women can take that may reduce the risk of having a child with autism. Future research is warranted to replicate these findings and enhance understanding of potential mechanisms.


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