On April 11-13, 2010, over 30 individuals from a range of sectors and perspectives met in Salt Lake City to provide thoughtful input on the enhancement of the national vaccine safety system. Named the “Salt Lake City Writing Group”, the meeting was convened by the Vaccine Safety Working Group (VSWG) of the National Vaccine Advisory Committee (NVAC). Invited attendees included Peter Bell, Autism Speaks’ executive vice president of programs and services, and Sallie Bernard, Autism Speaks board member and Executive Director of SafeMinds. For the purposes of this meeting, participants were asked to bring their experience and expertise to bear on this issue, but were not asked or expected to represent the official views of their organizations of affiliation.
The NVAC advises the U.S. Department of Health and Human Services (HHS) on issues of vaccine policy. In 2008, NVAC formed a Vaccine Safety Working Group (VSWG) with two charges: first, to review and provide comment on the Centers for Disease Control’s Immunization Safety Office’s draft Scientific Agenda; second, to review the current federal vaccine safety system. Specific to the second task, the VSWG is charged with developing a White Paper (for consideration and possible adoption by the NVAC) describing the infrastructure needs for a federal vaccine safety system.
As part of these efforts, NVAC committed to meaningful public and stakeholder engagement. For the VSWG’s second charge, that process includes both the recently concluded meeting in Salt Lake City and a meeting of a broader group of stakeholders is expected to take place in Summer 2010 in Washington, D.C.
The accompanying memorandum from the Writing Group provides some highlights of the discussion that took place on April 11-13.
Help sought locating missing man with autism (Venice, Fla.)
The Sarasota County Sheriff’s Office is asking for the public’s help in locating a missing man who suffers from autism. Read more.
Measured doses of fact, friction in ‘Vaccine War’ (Boston.com)
There are no bad guys in “The Vaccine War,’’ no hiss-worthy villains who make it easy to decide which side we’re on. Read more.
Psychiatrist says Odgren not delusional (Woburn, Mass.)
After weeks of gruesome testimony and assertions of insanity, a state-certified psychiatrist told jurors yesterday that John Odgren was well aware of his actions and the consequences when he fatally stabbed a fellow student in the boys bathroom at Lincoln-Sudbury Regional High School three years ago. Read more.
Student fights to overcome autism (The Rocky Mountain Collegian)
By all appearances, Patrick McCaffrey seems like your average CSU student. He has a girlfriend, is a freshman having fun in the dorms and is adjusting to college life. Read more.
Child Health Director Has Background in Genetics (NYT.com)
Dr. Alan Guttmacher, a Harvard-trained geneticist and pediatrician, is the new acting director of the National Institute of Child Health and Human Development, the federal agency that finances research into child and maternal health. Dr. Guttmacher, 60, previously worked with Francis Collins on the Human Genome Project and then as the deputy director of the National Human Genome Research Institute of the National Institutes of Health. We spoke for three hours in his Bethesda, Md., offices and then later by telephone. An edited version of the conversations follows. Read more.
Autistic Surfer Clay Marzo Masters Waves but Struggles on Land (ABCNews.com)
When pro-surfer Clay Marzo rides the waves off Maui’s coast, it’s hard to imagine that a man so gifted in the water could struggle so much on land. Read more.
This Top 10 Research Achievements of 2009 post comes from guest blogger Evdokia Anagnostou, M.D., a Clinician Scientist at Bloorview Research Institute and an Assistant Professor, Department of Pediatrics at the University of Toronto. Dr. Anagnostou leads a program of experimental therapeutics and neuroimaging in autism and is leading a series of clinical trials to study the efficacy of oxytocin, memantine, and other compounds for symptoms associated with autism.
The last decade has been fairly productive when it comes to research in psychopharmacology. Large scale multicenter studies have been conducted and more than one medication has shown benefit for the treatment of symptoms associated with autism. Still, our approach to pharmacology research has been relatively limited. We have examined the similarities between symptoms associated with autism and symptoms in other disorders, assumed that similar symptoms across disorders have similar neurobiology, and “borrowed” medications from other disorders with “overlapping “ symptoms to test in autism. The approach has been somewhat successful. We now have evidence from large multisite studies to support the efficacy of some atypical antipsychotics for irritability and aggression (risperidone (1) and aripiprazole (2)), and stimulants for the treatment of ADHD-like symptoms (3). This approach also has its limitations. An example may be the failure of large multisite studies to show effectiveness for the treatment of repetitive behaviors for serotonin re-uptake inhibitors (SSRIs). Although much remains to be explored and many questions still remain, one cannot help but wonder whether it is time for a paradigm shift in the way we approach pharmacology research. There are plenty of approaches that still remain to be tested in this population. Firstly, we have not yet done truly translational work. In other words we have not yet used the findings from genetics/ animal models/ pathology to develop treatments based on the neurobiology of autism itself, as it is revealing itself to us over the past few years. Secondly, we have not addressed what we really do in real life which is combine medications with psychosocial interventions. In fact, we have no data to date that any of the medications we use actually treat autism. Medications do not teach skills. It is the psychosocial interventions that treat autism. What we attempt to do with medications for the most part, is to enhance learning from such interventions either indirectly by reducing behaviors that interfere with learning ( e.g. irritability, aggression, hyperactivity, repetitive behaviors) or by directly facilitating learning processes (potential examples in trials: memantine, oxytocin). The question remains whether the combination of medications with psychoeducational treatment is favorable compared to medications alone or the psychoeducational treatment alone. Previous studies in other neurodevelopmental disorders, such as ADHD, (4) have taught us that when the effect of medication is large, it may be hard to show additional benefit from psychosocial interventions. As such both comparisons: combination treatment vs. medication, and combination treatment vs. psychosocial intervention are worth exploring.
Recently, the RUPP group published the first randomized controlled trial that tested the combination of a medication with a parent training curriculum based on ABA principles for the treatment of irritability/aggression (link to Top 10 story on combination therapy) (5). This was a 24 week randomized trial of combination treatment vs. medication only (risperidone/aripiprazole alone). 124 children ages 4-13 with frequent aggression, self injury and tantrums were recruited. The primary outcome measure was a modified for autism version of the Home Situations Questionnaire (HSQ), a 20 item questionnaire aimed to measure non compliance in every day circumstances. Secondary measures included the Aberrant Behavior checklist, the Clinical Global Impressions measure and the Children Yale Brown Obsessive – Compulsive Scale-PDD version. The parent intervention consisted of 11 sessions with a certified therapist, three additional optional sessions and up to 3 booster session for a total of up to 17 sessions, lasting 60-90 min and delivered individually to the families. The curriculum included teaching on visual schedules, positive reinforcement, compliance, functional communication and adaptive skills. The sessions were fairly individualized to the child’s level and needs. The medication was risperidone dosed by weight and was switched to aripiprazole by week 8 if the risperidone was ineffective. The study reported that combination treatment was more effective than medication alone as measured by the HSQ, irritability hyperactivity and stereotyped speech as measured by the ABC. They also reported that the mean dose of medication required in the combination group was less than that required in the medication alone group (1.98 mg/d vs. 2.26 mg / day respectively).
In summary, combination treatment was more effective at improving everyday outcomes than medication treatment alone. This Top 10 paper provides initial evidence that such trials are feasible and worth exploring. The authors argued that this study aimed at a different outcome (real life situation improvement) than the original risperidone studies, and as such, suggests that integrated trials can be successful when the outcome measure for the medication is somewhat different than that for the psychosocial intervention / combination treatment. In fact, as previously discussed, it makes sense that generalizability of the medication effect is accomplished by parent training given that the medication itself is not likely to teach the child or the family any skills. The question still remains in the blogger’s mind whether the effects of combination treatment should be tested against intensive parent training alone. Although I agree with the authors that the effect size of the risperidone is large, these medications are associated with a relatively unfavorable side effect profile and it would be of great interest to learn how much of the effect size observed with the combination treatment can be achieved by using parent training alone, given that decisions on the using a medication are not solely based on the efficacy profile of medications. Such studies may have implications for systems delivery and the generalization of results may be more difficult given the differential insurance coverage for medications vs. psychosocial interventions, but may have significant impact in the way we treat children with autism
The study is very important as it is the first such trial in autism and highlights the need for integrated medication/psychosocial intervention trials. Future studies will likely focus on integrated treatments targeting both decrease of maladaptive behaviors as well as skills acquisition.
1. Research Units on Pediatric Psychopharmacology Autism Network. Risperidone in children with autism and serious behavior problems. N Engl J Med. 2002;347:314Y321.
2. Owen R, Sikich L, Marcus RN, Corey-Lisle P, Manos G, McQuade RD, Carson WH, Findling RL. Aripiprazole in the treatment of irritability in children and adolescents with autistic disorder. Pediatrics. 2009 Dec;124(6):1533-40.
3. Research Units on Pediatric Psychopharmacology Autism Network. Randomized, controlled, crossover trial of methylphenidate in pervasive developmental disorders with hyperactivity. Arch Gen Psychiatry. 2005 Nov;62(11):1266-74.
4. MTA Cooperative Group. National Institute of Mental Health Multimodal Treatment Study of ADHD follow-up: 24-month outcomes of treatment strategies for attention-deficit/hyperactivity disorder. Pediatrics. 2004 Apr;113(4):754-61.
5. Aman MG, McDougle CJ, Scahill L, Handen B, Arnold LE, Johnson C, Stigler KA, Bearss K, Butter E, Swiezy NB, Sukhodolsky DD, Ramadan Y, Pozdol SL, Nikolov R, Lecavalier L, Kohn AE, Koenig K, Hollway JA, Korzekwa P, Gavaletz A, Mulick JA, Hall KL, Dziura J, Ritz L, Trollinger S, Yu S, Vitiello B, Wagner A; the Research Units on Pediatric Psychopharmacology Autism Network. Medication and Parent Training in Children With Pervasive Developmental Disorders and Serious Behavior Problems: Results From a Randomized Clinical Trial. J Am Acad Child Adolesc Psychiatry. 2009 Oct 23. [Epub ahead of print]
Nadia Bloom: ‘I Thought I Was Never Going To Be Found Out There’ (ABC News)
The 11-year-old girl who was missing for four days described how she survived the dangerous Florida swamp and said she was scared and worried no one would ever find her. Read more.
Class helps autistic kids learn to socialize (Mansfield, Ohio)
Several programs tackle educational or physical barriers, but the Friendly House and the Independent Living Center know there’s more to living for children with autism and attention deficit disorders. Read more.
Jury’s task is unenviable (Boston.com)
There’s an old, classic movie — “Twelve Angry Men’’ — in which the dozen members of the jury bring all their life experiences into the jury room. It makes for gripping drama. Read more.
Autism and its effects on siblings, family members and the community (Brownsville, Texas)
“Tommy” walked down the aisle at his favorite store, Target. He spotted what he was after, a small toy elephant. Tommy loves elephants. He turned to his parents and his sister “Jenny”. Read more.
Police say missing autistic teen has been found (Canada)
Toronto Police say a missing autistic teen who went missing from a home in Scarborough Saturday has been found. Read more.
Rodney Peete learns from autistic son (ESPN.com)
Last month I took my 13-year-old to the mall to buy jeans. Then he ate a burger, took a nap and now I need to buy new, larger jeans. Read more.
TUNE IN - “Growing Up with Autism” webinar
Tuesday, April 27, 1-2 p.m. EDT
Join a panel of scientists, parents, and individuals with an autism spectrum disorder (ASD) to learn what it is like “Growing Up with Autism.” Dr. Geraldine Dawson, Ph.D, the Chief Science Officer at Autism Speaks and Research Professor at UNC Chapel Hill will lead a discussion with Connie Kasari, Ph.D. (UCLA), Holly Robinson Peete, and John Elder Robison, to address the challenges that face individuals with an ASD and their families as they are initially diagnosed, navigate peer interactions and age out of services as they enter adulthood.
The panelists will also focus on the different needs and abilities individuals with an ASD have in the hope of generating acceptance and support in the community. This poignant webinar will combine professional experts with personal experience to offer unique insights and perspectives that will be valuable to all who are touched by this increasingly common spectrum of neurodevelopmental disorders.
To register for the free webinar, please visit https://www1.gotomeeting.com/register/563407008.
Stay informed about “This Emotional Life’s” on-going webcasting events with thought leaders in the fields of mental health and wellness by signing up for their bi-monthly newsletters.
If you miss the webinar, we will have information soon about how you can view it. Please stay tuned!
Tomorrow evening “Frontline” on PBS will present an episode called The Vaccine War. The show will address the controversy surrounding vaccines and the differing perspectives of the general public, scientists, and public health officials. Visitors to Frontline’s website can interact with medical experts identified by Frontline who will be responding to comments and answering questions. Visitors can also take a survey featuring five key questions about their attitudes toward vaccines, and find out how well their responses match responses from a nationwide survey.
Learn more about the episode and check your local listings here.
My name is Meghan des Groseilliers and I’m a sophomore at Ursuline Academy in Wilmington, Delaware. My 10-year-old brother Robby was diagnosed with PDD/NOS eight years ago. Over the years, living with autism has deeply impacted me. I have watched my brother both struggle and succeed daily in most everything he does. Because of this experience, I wanted to make a difference for children diagnosed with autism and their families. I have walked for Cure Autism Now and subsequently, Autism Speaks. So the choice of this organization, which is near and dear to my heart, as the recipient of a fundraiser was a simple one. For my “Sweet 16” birthday party on March 20, I invited 150 of my friends to a dance party at a local fire hall. Instead of receiving birthday gifts, I asked my friends to make a donation to Autism Speaks and we raised $3,200. There were three key reasons for doing this, the first of which was to help Autism Speaks help families like mine. But the other two reasons were just as important. First, the party helped raise awareness of autism with teens in my community. It was remarkable to see the number of raised hands when Christina Carty (Greater Delaware Valley Regional Walk Director) asked how many people had a family member or knew of somebody affected by autism. This is important because we need to know that there are others out there to talk to about our common feelings and struggles. The video and statistics shown at the party gave us a clear picture of the proliferation of autism and the limited funding it receives. Finally, this party was an incredible lesson in giving and I hope other kids will do the same with a charity of their choice. In the end, we all had a great time socializing and dancing for a wonderful cause. Even Robby danced and enjoyed the party as well, showing my friends that even though he’s on the spectrum, he’s no different than them – he’s a kid who wants to have a great time in support of a great cause.
Study shows extremely preterm children are 3 times as likely to have psychiatric disorder (Washington D.C.)
Significant advances in the neonatal intensive care have resulted in increased survival rates of children who are born at less than 26 weeks of gestation, so termed “extremely preterm children”. Notably, however, improved survival rates have been accompanied by a higher risk for later cognitive, neuromotor, and sensory impairments in these children. Read more.
Grandparents Often Help Support Kids With Autism (NPR.com)
Having a child with autism can turn parents’ lives upside down. But it can also profoundly affect the lives of grandparents, according to an online survey by the Interactive Autism Network (IAN). Read more.
Sirius XM To Broadcast Doctor Radio Reports: Understanding Autism (SiriusBuzz.com)
Ever wonder what that little blue puzzle piece is on Mel Karmazin’s lapel? It is his way of showing that he supports autism awareness. I myself have one, as do many people across this nation. Read more.
Attorney for parents of special needs kids accused of practicing without license (Washingtonpost.com)
Life for parents of special-needs children can be challenging on its best days and crushing on its worst, some parents like to say. The parents of kids with autism, learning disabilities and other problems band together to share stories of frustration and success, and to swap the names of the best schools, the best psychologists – and the best lawyers. Read more.
How, When Child Develops Autism May Determine Outcomes (U.S. News & World Report)
Children with autism whose social and communications skills regress around age 3 tend to have more severe autism than children who show signs of the neurodevelopmental disorder at younger ages, new research finds. Read more.
Man shares story about growing up w/ autism (Los Angeles, Calif.)
Growing up through your teenage years is hard enough, but for those with autism, those challenges are multiplied. But one young man showed me how he turned those obstacles into opportunities, and has a lot to share about growing up with autism. Read more.
Hope Network opens state’s 1st all-inclusive autism center; open house today (Kentwood, Mich.)
Hope Network leaders open The Hope Network Center for Autism today, the state’s first all-inclusive center devoted to treating the fastest-growing developmental disability in the U.S. Read more.
Son’s autism leads to innovation (BBC)
The father of a child with severe autism has developed technology to help him communicate. Read more.
Judge in Odgren case asked to explain insanity verdict details (Woburn, Mass.)
John Odgren’s lawyer asked the judge overseeing the teenager’s murder trial to detail to jurors the process that follows a verdict of not guilty by reason of insanity, saying that a general misunderstanding of the procedure could influence the jury’s deliberations. Read more.
Walk Now for Autism Speaks: Los Angeles (Los Angeles, Calif.)
Take an important step in the fight against autism and join ABC7 and Autism Speaks for Walk Now for Autism Speaks: Los Angeles, Saturday, April 24, at the Rose Bowl in Pasadena. Read more.
The boys and I were hanging out in Sean’s room, winding down from the day. Sean (my son who has autism) was getting into his covers and his brother was sitting at the end of his bed. I turned off the lights to get Sean ready for bed and he said sweetly, “Can you talk to me, Mommy?”
I sat down on his bed, the room dark, and he said quietly, “Sometimes I have good dreams.”
“You do?” I said, surprised. Most of the time, when I ask him what he dreams of he says quickly, “Nothing.”
“Yes,” he whispers.
His older brother, curious asked, “What do you dream about, Sean?”
He pulled the covers over his face and said happily, “Farms. And petting cows. And sometimes I am skydiving.”
His older brother laughed kindly and said, “Yes, Sean. Sometimes I dream that I can fly, too. It’s so awesome. Maybe you’ll have a dream that you are skydiving and you parachute down into a barn and you can pet the cows.”
“I love petting the cows in my dreams,” he said, his voice softened with the memory.
His brother said, “Yeah, I love the good dreams. I don’t like the bad ones. Sometimes I dream that someone is chasing me and I can’t scream for help. And one time I dreamed that a bad man took Sean and I couldn’t stop him.” his voice scared.
Sean said, “I have bad dreams about zombies.” his voice shaky. “I don’t like those dreams.”
I smoothed his hair and kissed him on the forehead, “No bad dreams tonight, pumpkin. Think of skydiving. Dream of the cows.”
I stood up and took his brother to his room, his hockey posters and medals hanging on his walls. I pulled back his NFL covers and tucked him in.
“What are your good dreams, mom?” he asks, burrowing his body into the blankets.
Do I dare tell him that everyday I dream that Sean will come to me, with promise and hope in his eyes, words like honey dripping from his lips, his conversations on-topic and his body free of the impulses and hopping and the strange noises that he often makes. That he will be the boy I have always dreamed of – a boy who can run and play easily with others, who can read books and comics, who doesn’t cry or scream when things don’t go his way and who can live in a world that doesn’t feel like it is swallowing him whole.
But I don’t. I tell him that my favorite dream is that I am flying, my arms stretched, scraping clouds and blue sky with my fingers, looking down over green hills and pastures of wheat below, and my heart beating electric.
And I don’t share with him the nightmares I have had either. The one where he and I are playing with Sean near a river, the water clear, cold and rushing with purpose. I look away for the briefest moment and when I turn back, Sean is falling into the river, his body disappearing, the river water turning muddy, almost black. I frantically reach my hands, my arms into the freezing water, searching for his little fingers, a shoulder, a hand but pull out only smooth rock and silt. I yell at my oldest to help me, his small arms, shaking and panicked, hot tears on his cheeks and his hands surface with nothing, nothing but river water and sticks and pebbles. And I cry, my fingernails digging into the earthy riverbed and yell until I am sitting up in my bed, a scream caught in my throat, my armpits damp and I finally wake. It’s not real. He is sleeping soundly in his bed. It is not real. I haven’t lost him.
But I cry anyway because this nightmare (and I have had it several times) seems too real to me. And because the metaphor of this dream, that I’m losing my child to autism, haunts me, not only during the daytime, during the tough moments, but also the fear stays with me at nighttime, penetrates my sleep and plays itself out in my dreams.
Sometimes this dream takes place at the ocean or a swimming pool, but it always ends the same, my oldest son and I are crying and searching for the little boy who has been stolen away from us, trying to touch his skin, hear his voice, trying so hard to keep him with us, in our arms, our relieved sighs against his sweet red hair.
I don‘t share this with my oldest. I am sad that he is even in this terrible dream, that he is standing next to me, frightened, doing his best to save his brother, doing all that he can to save me from such despair and not being able to do so.
Then I am reminded that my favorite dream is realized. It’s the luck of a good husband, of two little boys who teach us everyday that all we can do is just love them simply and kindly. So I try to push the bad dream out and replace it with the one where my beautiful boy is laying in the hay, the sun warming his shoulders, his cheeks and he is with his beloved cows, petting their soft, shiny coats. He is happy and he is laughing and he is safe. And yes, he dreams. My boy has dreams.
This week’s “In Their Own Words” is by Katie Bevins. You can read more of Katie’s writing at http://autism–tearsofaclown.blogspot.com.
Autism Speaks U, an initiative of Autism Speaks, focuses on engaging the young philanthropists of the world and connecting college students with the autism community. Autism Speaks U kicked off Autism Awareness Month with fundraising events led by college students nationwide.
On April 10, 2010 the fifth annual “We Are…Curing Autism Now” 5k race/3k walk presented by Beta Sigma Beta, Alpha Phi, Alpha Sigma Alpha, Pi Beta Phi and Sigma Delta Tau took center stage in State College, Penn. More than 1,200 participants joined in on the day’s fun. The event, co-hosted by Penn State football’s play-by-play announcer, Steve Jones, and Drew Shannon of 105.9 Qwik Rock, featured a performance by the Whiplash dance team. With nearly $100,000 raised this year, the event has raised more than $650,000 since its inception in 2006.
The following weekend, the second annual “Fear the Turtle, Find a Cure for Autism” 5k race/3k walk took place on at the University of Maryland. To start the event, PandemoniUM, the University’s most eclectic co-ed a cappella group, sang the national anthem. Presented by the brothers of Sigma Phi Epsilon and the sisters of Sigma Delta Tau, the event brought together over 220 members of the campus and community to help raise both funds and awareness for autism. Raising nearly $20,000, the event looks to break the $50,000 mark in just two short years.
Other recent Autism Speaks U events included New Mexico Highland University’s first run/walk, with 150 walkers raising approximately $2,200, and Curry College’s “Work Out for Autism” event which raised $1,300 with 50 students participating.
The team at Autism Speaks U supports students in planning and executing awareness and fundraising events. Together, we build awareness about autism and raise critical funds to help all those affected by autism. To get involved with Autism Speaks U, contact Sarah Caminker at firstname.lastname@example.org and become the next student leader at your school.
Check out photos from these Autism Speaks U events below!