Tag: Autism and families

Signs of Autism

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New Policy Reduces Anti-Psychotic Medications in Foster Children

Photo by Michał Parzuchowski

Texas strategy reduces prescriptions without compromising care, Rutgers study finds

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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.

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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.

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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.

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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.

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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.”

Early Intervention in Autism Improves Language, IQ and Social Skills

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Credit: UC Davis Health
Sally Rogers, PhD works with a child.

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.

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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 the American 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.

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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.”

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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.

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“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.

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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.”

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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.”

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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.

Black Children Tend to be Diagnosed with Autism Later than White Children

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Photo by Zach Vessels
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The rate of diagnosis for autism spectrum disorders (ASD) is the same among all racial groups — one in 110, according to current estimates. However, a study by a Florida State University researcher has found that African-American children tend to be diagnosed later than white children, which results in a longer and more intensive intervention. The reasons for later diagnoses include a lack of access to quality, affordable, culturally competent health care, according to Martell Teasley, an associate professor in Florida State’s College of Social Work who has conducted a comprehensive review of researchliterature on autism and African-American children. In addition, the stigmaattached to mental health conditions within the black community contribute to misdiagnoses of autism, and underuse of available treatment services.

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“There are no subjective criteria for diagnosing autism. Only brain scans can truly provide appropriate diagnoses, because we are dealing with biological and chemical imbalances in the brain,” Teasley said. “Not every child is going to have access to this kind of medical evaluation, particularly those who are indigent and don’t have health care funding.”

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Teasley examined ASD diagnosis and treatment strategies, and their effect on African-American families, in “Autism and the African-American Community,” a paper published in a special issue of the journal Social Work in Public Health (Vol. 26, Issue 4, 2011) that dealt with health-care policy issues in the black community related to the human genome.

Credit: FSU Photography
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Associate Professor in Florida State’s College of Social Work

Teasley co-wrote the paper with Ruby Gourdine, a professor of social work at Howard University in Washington, D.C., and Tiffany Baffour, an associate professor of social work at Winston-Salem State University in North Carolina. Because of the social stigma, Teasley says that some African-American families might be resistant to accept a diagnosis and treatment. “Less discussion about autism among African-Americans or between African-Americans and health care providers leads to misdiagnoses, a lack of treatment and a lack of services,” Teasley said.

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“This will lead to greater challenges for families — more stress and anxiety, and poorer developmental outcomes.” African-Americans also might resist a diagnosis and treatment because of a mistrust of mainstream health care providers over past discrimination. “African-Americans are well versed in going to a doctor who might have biases or discriminatory practices, so they may not readily accept what a doctor says,” Teasley said. In addition, a cultural divide between African-Americans and mainstream health care providers can hinder a timely and correct diagnosis.

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“There are not enough health care professionals who understand the cultural norms and attributes of the African-American community,” Teasley said. African-Americans live in all types of settings, but the majority live in urban areas, which have seen a decline in the number of mental-health care agencies since the 1980s. “This lack of accessibility causes a problem for some African-Americans,” Teasley said. Once a child is diagnosed with ASD, Teasley says both the child and the members of his or her family needs to receive appropriate training and counseling. “The children need behavioral counseling so they can develop the skills to live as independently as possible,” he said. “The families need to learn how to work with children who are autistic. “Intervention for any autistic child needs to start around age 3, so we can get the child to begin to learn how to eat right and develop normal, healthy routines, which will result in a better developmental outcome,” Teasley said. “Later intervention will result in a poorer developmental outcome that can have a lasting impact on the child’s and family’s quality of life.”

Martell Teasley, College of Social Work(850) 644-9595; mteasley@fsu.edu

“Could My Child Have Autism?”

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Ten Signs of Possible Autism-Related Delays in 6- to 12-Month-Old Children

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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.

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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.

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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

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“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 Institute Internationally 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.

Parents Left in the Cold When It Comes to Kids with Autism

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First-line health professionals must vastly improve their communication and engagement with parents if they are to help address the growing prevalence of autism among children, say researchers from the University of South Australia.

Undertaking a meta-synthesis of 22 international studies, researchers consolidated the voices of 1178 parents advocating for their children with autism, finding that parents feel ignored and dismissed by medical practitioners as they navigate initial concerns for their child, further investigations, and finally, a formal diagnosis of autism.

Researchers say that medical practitioners need to adopt a family-focused approach to ensure that parents’ concerns, perspectives and observations are taken seriously so that their child has appropriate and timely access to early intervention services.

Autism spectrum disorder (ASD) is a persistent developmental disorder characterised by social difficulties, restricted or repetitive patterns of behaviour, and impaired communication skills. The symptoms can range from mild to severe, with early signs often evident from early childhood.

Autism is one of the most prevalent developmental conditions among children, with one in 70 people in Australia on the spectrum, an estimated 40 per cent increase over the past four years. Internationally, statistics are higher with one in 59 children on the spectrum.

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UniSA lead researcher, Dr Kobie Boshoff, says the parent advocacy role is critical and must be taken more seriously by medical practitioners.

“Parents are natural advocates for their child, making them an invaluable source of information when it comes to complex diagnoses for invisible disabilities like autism,” Dr Boshoff says.

“Yet parents are increasingly finding the diagnosis process overly stressful and complicated.

“In this study, parents commonly reported their concerns for their child were not being heard or taken seriously by medical professionals. They said they felt confused, stressed and frustrated at the lack of support and understanding.

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“They also reported lengthy delays in receiving a diagnosis for their child, as well as a variety of unsatisfactory explanations as alternatives to autism. As access to early intervention services is essential for improving the development outcomes of children with autism, this too is unacceptable.”

Dr Boshoff says first-line medical professionals and service providers must recognise both the role of parents as advocates for their child, and the importance of the parent-practitioner role, which can significantly impact future relationships with other professionals.

She says to build trust medical practitioners must reassess the way they talk and engage with parents.

“First line health professionals and diagnostic services must ensure emotional support is provided to parents throughout the diagnosis process, engaging parents as partners and taking their concerns seriously,” Dr Boshoff says.

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“Autism spectrum disorder is a lifelong developmental condition. A positive experience in the early stages of diagnosis can deliver better relationships with future professionals, and most importantly, secure better outcomes for the children.”

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Media: Annabel Mansfield: office +61 8 8302 0351 | mobile: +61 417 717 504 email: Annabel.Mansfield@unisa.edu.au Lead Researcher: Dr Kobie Boshoff office: +61 8 830 21089 | kobie.boshoff@unisa.edu.au

NOTES TO EDITORS:

Dr Kobie Boshoff will also be presenting this topic at the Healthy Development Adelaide event ‘Research and Developments in Autism: A SA Perspective.’ On Wednesday 30 October 2019, rom 5:30pm – 8:00pm. This is a free event open to everyone.