Texas strategy reduces prescriptions without compromising care, Rutgers study finds
Rutgers researchers have found that a Texas strategy to reduce anti-psychotic medication for children can serve as a model for other state Medicaid programs.
The study was published in the Journal of the American Academy of Child & Adolescent Psychiatry.
“Youth in the United States foster care system are about five times more likely to take antipsychotic medications, a class of medications to manage their mental and behavioral health, than children in the general public,” said Thomas Mackie, assistant professor at Rutgers School of Public Health. In response, over 31 state Medicaid programs nationally are experimenting with different oversight strategies to ensure safe and judicious use of antipsychotic medications. These Medicaid programs are challenged to address these concerns while also ensuring access to antipsychotic medications in cases where these medications are clinically optimal, especially for those youth with psychosis, autism and other U.S. Food and Drug Administration–approved clinical indications.
An antipsychotic medication oversight strategy implemented in Texas included four elements: a mental health screening administered within 72 hours of the child being removed from the original caregiver; a health passport drawing on claims-based data; a psychiatric consultation line for child welfare staff, caregivers and judges; and a retrospective review of whether prescribed psychotropic medications met state best practice parameters after the antipsychotic medication was prescribed and dispensed.
The study, sought to examine whether the Texas program was effective in reducing the number of youth in foster care prescribed antipsychotic medications off-label to manage symptoms of conditions such as conduct disorders or attention hyperactivity disorders, while not decreasing use for disorders with FDA indications, such as bipolar disorder or autism spectrum disorders.
After the strategy started, the Rutgers researchers found the program resulted in roughly a 5 percent to 8 percent reduction in antipsychotic use for youth treated off-label for conditions like conduct or attention hyperactivity disorders, whereas no significant changes were found for youth treated for FDA-indicated conditions.
These findings show that the Texas program effectively reduced use of antipsychotic medications for off-label conditions where clinical concerns are greatest while not reducing antipsychotic medications for FDA-indicated conditions where stronger evidence exists for antipsychotic use among youth.
“Although the Texas model enrolled only youths in foster care, similar innovations are increasingly being extended to the general population of Medicaid-insured youth,” Mackie said. “This study provides important new evidence suggesting that states continue to incorporate or renew the inclusion of these additional behavioral health services into Medicaid-managed care arrangements.”
Breakthrough research demonstrating that children with autism as young as 18 months can vastly improve their language, cognition and social skills with an early intervention developed by UC Davis Professor Sally Rogers has been replicated in a major new study.
Rogers, a professor of Psychiatry and Behavioral Sciences at the MIND Institute, began work on a novel developmental approach to autism in Denver in 1981, and in partnership with her colleague and co-author Geraldine Dawson developed an approach to improving long-term outcomes for very young children. The Early Start Denver Model has since become a method used throughout the U.S. and around the world.
But until now ESDM had not been tested in the most rigorous fashion − a multi-site randomized trial, comparing the approach with community-based autism interventions. The study, which appears today in Journal of theAmerican Academy of Child and Adolescent Psychiatry, began in 2007 at three university sites around the country. The new research replicates an ESDM study published in 2010. Rogers emphasized that replication studies are rare and costly but critical to validate novel scientific findings.
The new study found that children receiving intensive ESDM in their homes for an average of 15 hours per week made significantly greater language gains than did children in the community interventions, and this was true for both children with more severe delays and those with less.
In addition to validating the efficacy of ESDM for language development, the study also found that children receiving services in the community settings made large gains in several areas.
“The idea that little children with autism who are getting good treatment can make this much IQ and language gain means we should expect this from quality early-intervention experiences,” Rogers said. “These findings should raise families’ hopes a whole lot.”
Pioneering autism treatment was a new idea
What distinguishes ESDM from the more traditional, behavioral interventions used with children with autism is that it combines developmental and behavioral approaches and is carried out within in everyday routines. ESDM is built on moment-to-moment interactions that young children typically have with other people, especially their parents, and uses children’s interests and favorite activities to assure that social interaction is interesting and fun.
“Unlike other approaches popular at the time that the Denver Model began, we used a typical preschool physical environment and focused on the learning opportunities that existed in social interactions between children and adults to accelerate children’s development,” Rogers said. “This was a new idea at the time.”
In 2012, TIME magazine named ESDM one of the top 10 medical breakthroughs because their work demonstrated that brain function among young children with autism can normalize with effective early intervention in profound, enduring ways.
For the current study 118 children with autism, ages 14 months to two years, were enrolled and randomly assigned to either ESDM or community interventions for 27 months. Children assigned to ESDM intervention received three months of weekly parent coaching followed by 24 months of one-on-one treatment about 15 hours per week in homes or daycare settings from supervised therapy assistants. Parents received coaching four hours monthly from a certified ESDM therapist. In the community setting, hours of treatment varied by site.
What researchers found was that at two of the three sites, children receiving ESDM had significantly more language improvement than the children in the community interventions, and there was no significant difference in language gain at the third site between the two modalities. When results from all three sites were pooled, there was a significant advantage for the children in the ESDM group overall.
“Language is the bridge to learning,” Rogers said. “Language is the door that opens up social communication and education and interactions with people in your community. It’s how you share with people. It’s a main vehicle for social interaction once you pass infancy.”
Autism treatment in the community greatly improved over time
The study also found that in terms of cognition and social skills, both the ESDM and community treatment groups made significant gains. Fortunately, Rogers said, laws requiring insurance coverage for early autism intervention and new knowledge about effective treatment have greatly improved community options for families seeking help for young children diagnosed with autism.
Rogers said families with a child diagnosed with autism should take some comfort knowing that the early treatments now widely available do make a difference.
“It says the autism scores at the time of diagnosis are just a starting point,” she said. “It says that the developmental paths and learning capacity of young children with autism are more plastic than we knew, and there are many ways to get learning opportunities to them.”
In addition to Rogers, UC Davis authors on the study were Marie Rocha, Laurie Vismara and Meagan Talbott. Other co-authors on the study included: Annette Estes and Jessica Greenson of the University of Washington; Catherine Lord and Jamie Winter of Weill Cornell Medicine, Cornell University; Costanza Colombi of University of Michigan; Geraldine Dawson of Duke University, and Gerhard Hellemann of UCLA.
This study was supported by individual Autism Speaks grants to Annette Estes and to Sally Rogers and by NIMH/NICHD award number R01 081757 as part of the Autism Centers of Excellence (ACE) Treatment Network, clinicaltrials.gov identifier NCT 00698997.
In recent days there has been significant coverage surrounding the Boca Raton native becoming the first openly autistic person to be admitted to the Florida bar. This accomplishment being widely accepted is a huge stride for those diagnosed with autism and autism professionals working hard to create inclusive workplaces.
To help others understand why inclusivity and supporting those with disorders is so important, I’d like to offer Arianna Esposito, Associate Director of Adult & Transition Programs at the Kinney Center for Autism Education and Support at Saint Joseph’s University. She is able to offer tips to help employers create an inclusive workplace. These tips are not only helpful for individuals with autism, but can benefit all employees. Please see a sampling of her advice below:
Fluorescent lights can be extremely bothersome for someone with sensory challenges. Offering dimmer lighting options or access to natural light are good alternatives. Odorless office supplies, cleaning supplies and other products are recommended to have in a supply closet or open areas. Designated, private quiet rooms for employees to take a call in or do work are a great option.
Providing clear and specific feedback is important for an inclusive structure. Try putting a positive spin on code of conduct by turning “do not” rules into “can do” rules.
Being flexible with needs such as accepting requests to wear specific clothing items and seating locations (not near crowded areas) will help individuals navigate the social world.
Ten Signs of Possible Autism-Related Delays in 6- to 12-Month-Old Children
Though autism is often not diagnosed until the age of three, some children begin to show signs of developmental delay before they turn a year old. While not all infants and toddlers with delays will develop autism spectrum disorders (ASD), experts point to early detection of these signs as key to capitalizing on early diagnosis and intervention, which is believed to improve developmental outcomes.
According to Dr. Rebecca Landa, director of the Center for Autism and Related Disorders at the Kennedy Krieger Institute in Baltimore, Md., parents need to be empowered to identify the warning signs of ASD and other communication delays. “We want to encourage parents to become good observers of their children’s development so that they can see the earliest indicators of delays in a baby’s communication, social and motor skills,” says Dr. Landa, who also cautions that some children who develop ASD don’t show signs until after the second birthday or regress after appearing to develop typically.
For the past decade, Dr. Landa has followed infant siblings of children with autism to identify red flags of the disorder in their earliest form. Her research has shown that diagnosis is possible in some children as young as 14 months and sparked the development of early intervention models that have been shown to improve outcomes for toddlers showing signs of ASD as young as one and two years old. Dr. Landa recommends that as parents play with their infant (6 – 12 months), they look for the following signs that have been linked to later diagnosis of ASD or other communication disorders: 1. Rarely smiles when approached by caregivers2. Rarely tries to imitate sounds and movements others make, such as smiling and laughing, during simple social exchanges3. Delayed or infrequent babbling4. Does not respond to his or her name with increasing consistency from 6 – 12 months 5. Does not gesture to communicate by 10 months6. Poor eye contact7. Seeks your attention infrequently8. Repeatedly stiffens arms, hands, legs or displays unusual body movements such as rotating the hands on the wrists, uncommon postures or other repetitive behaviors9. Does not reach up toward you when you reach to pick him or her up10. Delays in motor development, including delayed rolling over, pushing up and crawling
“If parents suspect something is wrong with their child’s development, or that their child is losing skills, they should talk to their pediatrician or another developmental expert,” says Dr. Landa. “Don’t adopt a ‘wait and see’ perspective. We want to identify delays early in development so that intervention can begin when children’s brains are more malleable and still developing their circuitry.”
About the Kennedy Krieger InstituteInternationally recognized for improving the lives of children and adolescents with disorders and injuries of the brain and spinal cord, the Kennedy Krieger Institute in Baltimore, MD serves more than 16,000 individuals each year through inpatient and outpatient clinics, home and community services and school-based programs. Kennedy Krieger provides a wide range of services for children with developmental concerns mild to severe, and is home to a team of investigators who are contributing to the understanding of how disorders develop while pioneering new interventions and earlier diagnosis. For more information on Kennedy Krieger Institute, visit: www.kennedykrieger.org.
Paula Ong will chat away about her childhood, dropping out of college and the 13 jobs she has held in the past two decades. But ask how she “feels” about living with Asperger’s syndrome and she will give you a lengthy pause.
“Feels” is not a concept she can verbalize clearly.
“Feeling is abstract and at times broad,” she explains. “Many people with Asperger’s syndrome have a hard time grasping and verbalizing abstractness.”
Asperger’s syndrome is a developmental disorder on the autism spectrum that causes impairment in social and communication skills. It is sometimes thought of as being a high functioning form of autism because “Aspies,” as they call themselves, are people of average or higher intellectual level.
Symptoms include repetitive routines or rituals; peculiarities in speech and language; socially and emotionally inappropriate behavior; difficulty interacting successfully with peers; problems with non-verbal communication; and uncoordinated motor movements. They also may have limited interests or an unusual preoccupation with a particular subject to the exclusion of other activities.
“They are high on systemizing and low on empathizing,” says Katherine Loveland, PhD, professor of psychiatry and behavioral sciences at The University of Texas Health Science Center at Houston (UTHealth) Medical School, which has just opened a new clinic for patients with Asperger’s. Changing Lives through Autism Spectrum Services (CLASS) will serve intellectually able people age 16 and older with Asperger’s or another autism spectrum disorder. “Systemizing is the kind of thinking we do when we organize things, solve concrete problems and think in terms of how things work as opposed to empathizing, where we are attuned to and concerned with the feelings of other people.”
It wasn’t until 1992 that Asperger’s was recognized as a distinct disorder by the World Health Organization and not until 1994 that it was included in the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV), the American Psychiatric Association’s diagnostic reference book.
So like many people who have Asperger’s syndrome, Ong’s ability to put a name to her idiosyncrasies didn’t come until she was well into adulthood. Ong, 41, was diagnosed with Asperger’s in 2006 during treatment for a mood disorder and attention deficit hyperactivity disorder (ADHD). Although current DSM criteria do not permit the diagnosis of ADHD together with an autism spectrum disorder, recent research including a major study at UTHealth has revealed that a majority of people with autism spectrum disorders have some form of ADHD as well.
“We’re only now getting good at detecting Asperger’s in young people and there is a cohort of adults from when we were not so good at detecting it,” says Loveland, director of the CLASS Clinic.
“Either it’s never been diagnosed or it’s been misdiagnosed,” Loveland says. “One of the reasons it might be missed is because they are intellectually able. They are bright and verbal and good at school work, but they have continuing social problems, such as forming relationships with peers, being accepted, and dealing with emotions.”
Ong is a good example. She is sharp with a keen sense of humor. She made As and Bs in school and excelled in history and science, the subjects that most interested her. She admits she wasn’t as good in math, which led to her decision to drop out of college, a decision her parents weren’t happy about. Her mother has degrees in journalism and business; her father is an aerospace engineer.
“My mom always suspected that I had something like autism despite what the schools told her when I was growing up,” says Ong, whose good grades disguised the severity of her disorder.
As she grew older, Asperger’s syndrome affected Ong’s ability to sustain a career. The longest job she held was from 1997 to 2006. She began the position working in a parking booth and the limited contact with customers played to her advantage. But when parking tickets went electronic and the booths went away, she had to interact more with customers and sometimes it didn’t go well. She was written up after chasing down a car and banging on its rear window because the driver followed another car through the gate arm without paying.
“Some Asperger’s people don’t think and feel at the same time,” she says. “With some Aspies, you think and then you feel or you feel and then you think. My thinking is visual. I’m impulsive. Customer service is not my thing despite the fact I’ve been doing it for more than 20 years. The only time my experience in customer relations comes in handy is when I’m ‘translating’ for other people with Asperger’s. I have to know body language and stuff and I think I have a good idea of what others are expressing.”
Ong has been under a doctor’s care since she was in her mid-20s for stress management and mood disorders, which includes depression.
“There are emotional issues… if people think you are odd, it affects how they treat you, and so you have a lot of stress,” Loveland says. “People on the autism spectrum have more trouble regulating their emotions. Their resources for coping with stress are less developed and they can become upset very easily. Over time, the stress and the emotional upset can lead to anxiety and depression. That’s not good for the developing brain and as a result, they often develop secondary psychopathologies.”
Specialists such as those at the UTHealth psychiatry CLASS Clinic can determine whether the problems an individual is experiencing are related to Asperger’s syndrome. Co-existing conditions such as depression and anxiety can be treated with medication or psychotherapy.
“I really feel there is an unmet need in the community. There are people out there who are struggling and need a place to go. We want people to access the support they need,” Loveland says. “They will be able to meet people on a similar journey and know they are not alone. Group and individual training will help them develop skills that they need to feel successful in stressful situations.”
Ong has learned many skills, including using her favorite stuffed animal, Boo, to help her through stressful situations.
“I had to make presentations about Asperger’s in Corpus Christi and Fort Worth and Boo came. I didn’t know any of these people or what they would think of us. Boo takes away my fears. He handles my emotional burden,” Ong says.