This summer brought the completion of the first round of Dennis Weatherstone Pre-Doctoral Fellowships, funded by the Stavros Niarchos Foundation in memory of Sir Dennis Weatherstone, the former chair and CEO of J.P. Morgan, to encourage promising young scientists to chose autism research as their career.
In this blog post, Meaghan Parlade, the first Weatherstone grad to complete her fellowship, reflects on her experience and the program’s importance to future autism research.
The life of a pre-doctoral student can be intense and taxing, to say the least. However, the training and experiences I have garnered during the past (dare I say it?) seven years have been invaluable in positioning me to achieve my ultimate goal: to further the scientific understanding of autism in a way that improves the lives of affected children and families. Families affected by autism are some of the most steadfast, passionate, and deeply devoted people I have ever encountered. No doubt, they will continue to inspire my work.
Looking back at my training, one experience stands out above the rest as the most formidable in shaping my development as a clinician and scientist: The Dennis Weatherstone Predoctoral Fellowship awarded by Autism Speaks. I am honored to be the first to complete the program.
With the support of Autism Speaks and in collaboration with my graduate advisor Jana Iverson, PhD, at the University of Pittsburgh, I have been investigating the development of communication skills in infants who have an older sibling on the autism spectrum. These skills include gestures, smiles, eye contact and sounds.
In conducting this research, our hope is to identify behavioral indicators of autism at a much earlier point than is currently possible. This, we further hope, will allow earlier diagnosis and treatment and lead to improved outcomes. In addition, by studying the development of social difficulties during infancy, we hope to improve our understanding of social communication difficulties in older children on the spectrum—and, in turn, hasten the development of tailored interventions.
Fellowships such as mine are highly coveted by my classmates because the financial support allows us to focus intensely on our research instead of taking on such time-consuming jobs such as teaching and working in faculty labs. The Weatherstone Fellowship allowed me to devote the majority of the past two years to my scientific research, clinical goals, and professional development. It also allowed me to meet regularly with other Weatherstone fellows and their advisors (all of whom are leading scientists in autism research) and to participate in national autism scientific meetings—opportunities that will enable me to develop future collaborations.
Finally, I believe this experience played an instrumental role in helping me secure a predoctoral internship in clinical psychology, the final step in my training to become a child psychologist and practice independently in clinical and research positions. Starting Sept. 1st, I will begin my internship at the Mailman Center for Child Development at the University of Miami’s Miller School of Medicine—as the program’s first autism intern.
As I look forward to this new exciting step in my career, I continue to reflect on my experience as a Weatherstone fellow. I appreciate how it has helped prepare me for a career dedicated to excellence in both research endeavors and clinical work, ultimately allowing me to better serve the unique needs of children and families affected by autism.
Parents of a child with autism are understandably concerned about the likelihood that their subsequent children will be affected. Autism Speaks and its legacy organization, the National Alliance for Autism Research, have been funding research on younger siblings for nearly 15 years– to help us better understand their development.
In 2003, we began organizing and co-funding a very special collaboration—the High Risk Baby Siblings Research Consortium—in partnership with Eunice Kennedy Shriver National Institute for Child Health Development.
This week, we announced the results of the consortium’s largest ever siblings study. The researchers followed younger brothers and sisters from infancy through the preschool period, when autism diagnosis becomes possible. The study revealed a markedly higher risk among younger siblings than had been previously reported.
As the autism community absorbs the news, let me give you some background on the quality and importance of this research—and what it means for parents.
Our “Baby Sibs” researchers are an international network of clinical researchers who have been pooling information from studies of affected families in 21 sites in the US, Canada, Israel and the UK. Alycia Halladay, Autism Speaks director of research for environmental sciences, and Andy Shih, vice president of scientific affairs, have led the consortium from the start and continue to coordinate its activities.
In the study making headlines this week, the consortium researchers assessed 664 infants. Each had at least one older sibling diagnosed with an autism spectrum disorder (ASD). They found that 1 in 5 babies with an older sibling on the spectrum will likewise be affected—more than double previous estimates. The rate was higher among younger brothers—1 in 4, versus 1 in 9 for younger sisters. And autism affected nearly 1 in 3 infants with more than one older sibling on the spectrum. (Previous estimates came out of much smaller and sometimes less reliably conducted studies.)
So what does this mean for parents?
If you have an older child on the spectrum and you are concerned about your infant, talk to your pediatrician about your baby’s risk and your desire for close monitoring. And if you have any concerns about your child’s development, don’t wait. Speak with your doctor about screening.
Here are links to a number of helpful resources:
* Recent research funded by Autism Speaks shows that a one-page baby-toddler checklist can be used effectively as early as 12 months as an initial screen for autism and other developmental disorders. The screener is available here.
* As a parent or caregiver, one of the most important things you can do is learn the early signs of autism and understand the developmental milestones your child should be reaching. You can see the Learn the Signs guidelines on our website, here.
* Finally, families with one or more children on the spectrum can contact their nearest “Baby Sibs” consortium researcher if they would like to participate in this important research. The list is on our website, here.
By monitoring your infant closely and promptly beginning intervention if signs of autism appear, you can ensure that your child will have the best possible outcome.
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Autism risk ‘high’ for kids with older sibling with the disorder. Autism Speaks’ Alycia Halladay, Ph.D., provides perspective of NPR’s All Things Considered. To listen to the segment, visit here.
By Geri Dawson, Chief Science Officer, Autism Speaks
Last week, a paper was published in Pediatrics that argued against the routine screening for autism by pediatricians. Three investigators who are part of the Autism Speaks Baby Siblings Research Consortium and I submitted a letter to the editor in response to this paper, which has now been published. The link to the original article and the letter are provided below. Our letter provides a strong rationale and empirical evidence to support the American Academy of Pediatrics recommendations that all children be screened for autism at their 18 and 24 month checkups.
This exchange highlights the important role of the scientific research in directly influencing policy and clinical practice. We were able to cite research, much of which was conducted by Autism Speaks Baby Siblings Research Consortium investigators, to counter the inaccurate statements by the authors of the Pediatrics paper.
By: Alycia Halladay, Ph.D., Director of Research, Environmental Health Sciences
As the average age at which early signs and symptoms of autism and diagnosis moves becomes younger and younger, methods for intervening at autism at the earliest possible ages are becoming more widely used. At this year’s IMFAR meeting, several clinicians and researchers addressed differences in design, methods, and identified challenges and potential solutions for delivering intervention from individuals with ASD as young at 10 months of age. Since this is when very early symptoms of ASD can be detected, but not yet diagnosed, many are considering this as a method of prevention rather than intervention. A feasible and cost-efficient way to provide interventions to infants and toddlers is to engage parents and train them to use behavioral techniques to improve development. What works for adolescents and adults does not apply to infants and toddlers. Instead of spending time working on specific tasks and skillsets, clinicians work with parents and provide ongoing support to engage children in social, communication and motor skills during playtime activities. But does this prevent ASD?
The simple answer is that it is very complicated. As reported in an earlier report, one size does not fit all. There may be a number of variables that affect outcome. In addition, last year, a report out of the UK last year reported that parent-mediated interventions did not result in a change in diagnostic status in young children. This same group showed new data at IMFAR this year showing that the intervention was effective in some ways – infants showed increased attention and gestures as well as improved shared interest. These early improvements are thought to lead to a higher level of functioning later on.
Children with ASD suffer from impoverished social interaction, and parents can be instrumental in providing stimuli to their children to change behavior. Most interventions now focus on encouraging parents to actively engage the child using evidence based strategies, in natural environments. Other types of interventions that were used included promoting behaviors and responsiveness in the context of everyday routines.
Given that published research don’t actually prevent ASD, but improve long-term outcomes, is the goal of early interventions to reduce the incidence of ASD? Alice Carter, member of the Autism Speaks Toddler Treatment Network noted that earlier screening and delivery of parent interventions which improve joint attention, and coordinated attention between parent and child – may prevent symptoms down the road, but may not always lead to a change in diagnosis. She stated “working with parents can make a huge difference in many children’s lives.”
Improved outcome measures which are more sensitive to improvements over time on a number of domains need to be developed to better describe these differences. In addition, working with a young child at home is difficult in any situation, and especially for families affected by ASD. Therefore, methods and techniques to maximize the amount of time parents deliver effective interventions are considered a priority. Autism Speaks is proud to sponsor this network in thinking about these important issues.
This post is by guest blogger, Samuel L. Odom, Ph.D. Dr. Odom is the director of the Frank Porter Graham Child Development Institute and professor in the School of Education at the University of North Carolina. He is the author or co-author of many refereed journal articles and editor or co-editor of seven books on early childhood intervention and developmental disabilities.
Many efforts exist now to locate practices, intervention approaches, and treatments that improve the development, functioning, and well-being of individuals with Autism Spectrum Disorders (ASD) and their families. Inspired by the model established by the Cochrane Collaboration (http://www.cochrane.org/ ) in evidence-based medicine, investigators from a variety of organizations (i.e., the National Autism Center, National Professional Development Center on ASD, What Works Clearinghouse) have conducted and are continuing to conduct systematic reviews and evaluations of the research literature to discern approaches with sufficient scientific evidence of efficacy to support their use. Such reviews have practical importance because they guide practitioners, physicians, and family members in their selection of practices to use with individuals with autism. They also have social policy implications in that they may guide the selection of services that received funding from social service agencies.
A research group at the Vanderbilt Evidence Based Practice Center has just published three such reviews in Pediatrics that contribute substantially to the growing literature on evidence-based practice. Following a standard and rigorous evaluation process, this research group reviewed the literature from 2000 to 2010 and reported their findings for Early Intensive Intervention (Warren et al., 2011), Medical Treatments for challenging and repetitive behavior (McPeeters et al., 2011), and one additional specific medical treatment, Secretin, thought to have generalized effects (Krishnaswami, McPheeters, &Veenstra-VanderWeele, 2011)
Early intensive interventions for children with ASD are behavioral or developmental in nature. Such interventions focus on improving the intellectual, communication, social, and adaptive functioning of young children with autism. In their review, Warren et al. (2011) examined the evidence for three comprehensive treatment approaches as well as a set of other approaches for which less research had been reported. The Lovaas/UCLA model has the largest set of research literature, with one study being judged of good quality, and a set of other studies being of lesser quality but documenting strong effects for the model. The Lovaas/UCLA approach is an intensive, individualized behavior therapy model that emphasizes application of applied behavior analysis principles and discrete trial training. The Early Start/Denver model also had one randomized study and a second supportive study documenting efficacy. The Early Start/Denver Model also employs applied behavior analysis principles within a functional developmental conceptual framework. The third set of intervention practices focused on training parents to deliver primarily applied behavior analysis interventions in the home and community to promote communication skills, IQ, and adaptive behavior. Three studies of fair quality substantiated this intervention approach. Warren and colleagues concluded that the early intensive interventions, as a group, have promising outcomes but the evidence of efficacy is at this point modest. They noted that such interventions have “significant potential” but require further research to establish efficacy more strongly. To quote the authors of the review, “At present, a paucity of research leaves us with individual studies that suggest promising outcomes but a critical need for replication, extension, and controlled studies of the factors that moderate treatment outcome. Thus, the low and insufficient strength of evidence reported in this review should not be interpreted as evidence that the interventions are not effective but, rather, as encouragement for additional research.”
In their examination of medical treatment, McPheeters et al. (2011) note that prescribing medication for co-morbid symptoms associated with ASD (e.g., challenging behavior, stereotypic behavior) is a common practice but reviews of evidence for outcomes have been limited. They examined the literatures for antipsychotic, Selective Serotonin Re-Uptake Inhibitors (SSRIs), and stimulant medications.
Two antipsychotic medications studied most often, risperidone and aripiprazole, targeted challenging behaviors and repetitive behaviors. Randomized studies of sufficient but varying quality documented the positive effect of both medications on ratings of targeted behavioral outcomes for children with ASD, but these studies also consistently documented adverse side effects such as weight gain. McPheeters et al. proposed that the reports of such consistent side effects might limit the use of such medications for all but those “individuals with significant impairments or risk of injury.”
Less or weaker evidence were found for the latter two forms of medication. One acceptable randomized study did document the effects of the SSRI Fluoxetine on repetitive behavior and a second randomized study of fair quality documented the effect of SSRI citalopram on challenging behavior. McPheeters et al. concluded, however, that the overall evidence for the use of SSRIs was insufficient. Similarly, although the RUPP Autism Network study of the effects of methylphenidate (a stimulant) on challenging behavior did reveal some positive effects, albeit with side effects, McPheeters et al concluded that the evidence for stimulants was insufficient. As a general conclusion, the authors proposed that literature addressing the use of medications for children with ASD lacks sufficient quality, studies has often been funded by pharmaceutical companies (without independent replication), and medications have not been compared with, or assessed in combination with, behavioral interventions that have the same targeted outcomes.
In a third review, Krishnaswami et al., (2010) examined the research on the use of Secretin for the treatment of communication impairments, symptom severity, and social deficits for children with ASD. Secretin, a medication used to treat gastrointestinal disorders and pancreatic functions, is also theorized to affect the central nervous system and act as a neurotransmitter. Its proposed use for treatment of ASD was based on an uncontrolled case series of three children. The Krishnaswami et al. literature review identified eight studies meeting their inclusion criteria, with quality of the studies ranging from good to fair. Across studies, no positive effects for use of Secretin were found. This was the most unambiguous finding of the three reviews by this group.
The three reviews conducted and reported by the Vanderbilt Evidence-Based Practice Center contribute to the ongoing knowledge about the “state of the art” in interventions and treatment for children with ASD. Their rigorous and conservative evaluations highlight the practices that are beginning to come forward as efficacious for individuals with ASD (e.g., some early intervention models, antipsychotic medications), the implications of employing some efficacious treatments (e.g., severe side effects), and treatments applied in the past that now have strong evidence of non-effects (i.e., Secretin). Importantly, these reviews speak strongly to the importance of future, high quality research in both the behavioral and medical treatment areas.
Zachary Warren, Melissa L. McPheeters, Nila Sathe, Jennifer H. Foss-Feig, Allison Glasser, and Jeremy Veenstra-VanderWeele. Pediatrics published online April 4, 2011 (10.1542/peds.2011-0426).
Melissa L. McPheeters, Zachary Warren, Nila Sathe, Jennifer L. Bruzek, Shanthi Krishnaswami, Rebecca N. Jerome, and Jeremy Veenstra-VanderWeele. Pediatrics published online April 4, 2011 (10.1542/peds.2011-0427).
Shanthi Krishnaswami, Melissa L. McPheeters, and Jeremy Veenstra-VanderWeele. Pediatrics published online April 4, 2011 (10.1542/peds.2011-0428)
A Toy Story: Toddler Treatment Network finds an effective treatment strategy for some young children with ASD
It is now possible to screen for autism spectrum disorder in toddlers as young as 18 months of age and ways of screening even earlier are being tested. When a parent learns that their young son or daughter is showing symptoms of autism, it is important that they be offered intervention strategies that can help their toddler at risk for ASD have the most positive outcome. To address this need, in the summer of 2006, Autism Speaks began an initiative to support research on early intervention targeting toddlers with autism spectrum disorder (ASD) from 18-24 months of age. There are many questions that need to be addressed: Who should deliver the intervention? How many hours are required? What strategies should be used? Are these strategies effective? Research funded by Autism Speaks is addressing these questions.
At the time the initiative was started, many clinicians were already referring children to birth to three services in their communities and developing their own programs using techniques that could improve communication, social behavior, and language in toddlers. However, very few randomized clinical trials – the gold standard for determining whether a treatment is really effective – had been performed in toddlers with ASD. Of the randomized clinical trials that did exist for this young age, the number of children participating was low, so it was not clear how well the results would generalize to other children.
To solve this problem, Autism Speaks provided resources to clinicians and researchers who were working with children with ASD as young as 18 months of age to determine what types of interventions were effective, what made them beneficial, and how symptoms improved over time. As a result, 7 projects involving multiple sites around the US and Canada began in 2007 and the Toddler Treatment Network was born.
Each project is unique in the type and style of the intervention, but all the projects shared a common link: they all included parent training for delivery of interventions at home. This model is attractive because parents or other caregivers are able to deliver the intervention through the day in familiar settings. This model offered more time in intervention and wascost-effective. Members of the Toddler Treatment Network came together to share ideas, best practices, and a plan to combine their data at the end of their studies. As a result, over 250 toddlers have been recruited to participate in these studies, and a meta-analysis combining data from all studies will be completed in 2012. Full descriptions of the projects can be found here: http://www.autismspeaks.org/science/research/initiatives/toddler_treatment_network.php
Recently, one of these research groups published their first set of findings in the Journal of Child Psychology and Psychiatry. At study sites in Miami, Boston and Tennessee, children with ASD were enrolled in the Hanen More than Words program, which is focused on developing language and communication skills in toddlers. The comparison group of children with ASD were enrolled in local early intervention programs, support groups, and other behavioral interventions. Children and parents were assessed at the beginning of the study, during the study, and 4 months after the intervention ended.
At the beginning of the study, a number of behaviors were examined, including the number of toys or objects a child played with. While the Hanen intervention was not effective for all children, it was particularly effective for children who did not play with many toys before the program started.
Why? The researchers speculate that during the intervention the toddlers who were less object- focused may have been more easily engaged with their parents during the intervention and thus spent more time learning appropriate responses. These results suggest that as toddler interventions are developed it will be important to understand which kids are most likely to benefit from each type of intervention.
This study adds to the body of evidence showing that early intervention in autism can lead to meaningful improvements in social, behavioral, and communication outcomes. However, one type of intervention strategy is not going to work for all children affected with ASD.
With this in mind, studies that are part of the Toddler Treatment Network focus on different programs and different methods for promoting development. A higher-intensity program may be needed in some children. For other children, however, the Hanen style of intervention strategy, which allowed parents to deliver the intervention in different settings, resulted in significant improvement in outcome compared to traditional methods.
Wendy Stone, Ph.D., study co-author and director of the University of Washington Autism Center described what she saw as a successful result of early intervention for autism: “Our ultimate goal is to catch the symptoms early and find effective preventive interventions so that these children can attain their full potential.” Autism Speaks is looking forward to the findings from all these studies, and will keep you updated when they are published.
On Saturday, March 5th, over 100 researchers, scientists, NY state advocates, professionals, service providers and parents gathered in NYC for a public policy roundtable on the challenges of enhancing early intervention services for toddlers with ASD. It is estimated that over 1300 children between 18 and 30 months living in NYC will be diagnosed with ASD, however, it’s likely that not all of them are receiving the services they need. When it is delivered, early intervention can lead to improvements in outcome (http://www.pbs.org/pov/bye/)
What then, are the barriers? In some cases, pediatricians may not be implementing screening tools to find toddlers with ASD. Also, parents don’t know what to do even if they are told that their child has screened positive. Interventions themselves may be inaccessible or nonexistent. How then can scientists who are developing and determining effectiveness of interventions work with pediatricians and service providers in their communities? How can state agencies and advocacy organizations help their efforts? What needs to be done to build upon or improve existing systems?
First, CAPACITY should be built to train specialists working with the children in both medical and non-medical settings to identify those with ASD early on. This includes working with nurses, day care and child care providers, and family members to learn to identify early signs of ASD. Its important when identifying and referring individuals with ASD to early intervention is to be mindful of CULTURE. In the ethnically diverse New York City, there are neighborhoods that speak dozens of languages. Instead of screening tools used in doctors offices, there is a need for alternative, observational tools that can be used in a variety of settings. Screening should be implemented in a family friendly way, and speakers and participants provided examples of ways they have been working with pediatricians and other professionals to make the most of a very short 18 month well child visit.
Once children are identified, service providers unanimously agreed that there should be CONSISTENCY and COORDINATION across teams of service providers, parents, and clinicians. At the core, better COMMUNICATION is needed. Communication always sounds like a good solution, but more specifically, communication with the parent in helping families find the help they need was highlighted as a need. Also, those who are working with the child on an intervention should have the opportunity to communicate with each other to develop the most effective and feasible treatment plan.
Parents with children with ASD also need COACHING to use time at home to deliver interventions. The internet is a valuable tool for helping parents promote the same skills that clinicians are using, and can do so in a variety of settings. This improves behavior in different CONTEXTS. Gary Mesibov, from UNC stated “rather than simply looking at efficacy, which is the scientific evaluation of whether a treatment works, psychologists should be examining the generality of effects across patients, therapists, culture, settings and especially the feasibility of delivering the treatments in real world settings”. Of importance, early intervention services should be CUSTOMIZED. The challenge is finding the right service or intervention for the right family at the right time in the right setting. Different children will respond to different therapies. What are the right ingredients to an effective intervention?
What does this all come down to? COST. Health economist Michael Ganz presented some theoretical models which showed that while initial cost of early intervention service would be high, the long term savings in cost of therapy over a lifetime, decrease in special education services and increase in lifetime earnings would make this initial investment worthwhile from a financial perspective as well. Currently, service eligibility and reimbursement is based on a diagnosis. If they were based on a risk of diagnosis from very early markers, the outcomes of children at risk for a number of disorders could be very different.
Those were the challenges. How about the solutions? Autism Speaks is CONTRIBUTING on a number of levels:
- Randomized control research on the efficacy on different early interventions which all use a parent-mediated component (http://www.autismspeaks.org/science/research/initiatives/toddler_treatment_network.php)
- Advocacy for insurance coverage of screening, diagnosis, treatments as well as support for future federal and state funding (www.autismvotes.com)
- Fostering training in different communities, including low-resource countries, to improve the availability of services both within and outside the United States (http://www.autismspeaks.org/science/research/initiatives/gaph.php)
- Resources and tools such as the Autism Video Glossary that help parents and professionals learn more about autism’s early signs and diagnostic features and the 100 Day Kit that assist families in getting the critical information they need in the first 100 days after a child’s is diagnosed with autism.
What else is needed? Let us know what you think – while we may not be able to answer every comment we do read them and appreciate your thoughts. More information on the roundtable can be found here: http://www.hunter.cuny.edu/autismroundtable/home