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?
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.
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.
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.
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.
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.
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.