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Propranolol for Behavior Challenges: Not Yet Ready for Widespread Use
Posted by Autism Treatment Network Medical Director Dan Coury, MD
Considerable community and scientific interest has been raised by recent reports that the beta-blocker propranolol improved word use in adolescents and adults with autism spectrum disorder (ASD). It is important to emphasize that this small study does not provide sufficient evidence of effectiveness or safety to support this use of the drug, which is FDA approved to treat high blood pressure. Although we share excitement in seeing medicines evaluated in bona fide clinical studies, families should be strongly cautioned against over-interpreting media reports as endorsement to pursue this treatment for their loved ones–until larger studies show it is safe and effective.
First and foremost, treatment of autism spectrum disorders (ASDs) should include a combination of behavioral and educational interventions. Many children, adolescents, and adults with ASDs also need treatment of associated medical or psychiatric conditions such as gastrointestinal disorders, asthma, anxiety, and symptoms of attention deficit and hyperactivity disorder (ADHD).
While we have strong evidence that our behavioral treatments provide benefit, we need more research on identifying medicines that can help relieve the core symptoms of ASDs and associated behavior challenges. Interest in propranolol began over 20 years ago, with a small study (involving eight adults with autism) that suggested the drug could reduce problematic aggression. In addition, the researchers noted subtle improvements in language and social behavior. They wondered whether this might be related to the known ability of beta-blockers to reduce the symptoms of so-called overarousal. For instance, some musicians and public speakers will take a beta-blocker immediately before a performance to reduce shakiness from stage anxiety.
The authors of that first study called for further research. And the gauntlet was picked up by David Beversdorf, MD, and his associates at the University of Missouri, one of Autism Speaks Autism Treatment Network (ATN) sites. Their latest report enrolled 14 high functioning teens and adults with autism, all of whom used spoken language. They found that, when taking the medicine, some of the individuals used more words over a given period of time. That is, they had greater “word fluency.” On average, the participants showed 25 percent greater word fluency. However, some of the participants spoke fewer words while taking the medication.
What does this mean? These early studies are too small and too limited in their evidence of benefit for us to recommend that adolescents and adults with ASD begin taking this medicine. We know even less about the safety and effectiveness of beta-blocker medications in younger children. As the authors state, further study is needed to confirm both safety and benefits among a wide range of persons with ASD. And if these benefits are confirmed, we need to find ways to identify which people will respond positively to the medication and which will not. Certainly this is not a medication we want to be administering to everyone on the autism spectrum.
These early studies encourage us to pursue further research with propranolol, as we are doing with an increasing number of other medicines that could potentially help relieve the core symptoms of autism–including repetitive behaviors and impaired communication and social behavior. This exciting and encouraging research includes our study of the biological effects and behavioral benefits of both already approved medications and newly developed compounds.
Meanwhile, we have two FDA-approved medications for treating autism-related irritability that includes aggressive behavior and tantrums. They are risperidone and aripiprazole, both of which influence brain levels of the biochemical serotonin. Newer studies are looking at alternative medicines that affect other brain pathways. Early animal research with these compounds has been promising, and studies are now underway in people.
Bottom line: Studies such as Dr. Beversdorf’s are helping us better understand brain function in persons with ASD. This and related studies will ultimately lead us to new treatments and better outcomes. Until then, please stay tuned.
Autism and ADHD
Posted by Andy Shih, Ph.D., vice president of scientific affairs for Autism Speaks
As researchers and parents, we’ve long known that autism often travels with attention deficit and hyperactivity disorder (ADHD). What we haven’t known before is why that is. Also, few studies have examined how ADHD affects the quality of life of those with autism.
In the past month, two studies have come together to help connect our understanding of autism with behavioral issues such as hyperactivity and attention deficit. The first study looked at gene changes in ADHD and autism. The second looked at how frequently parents see the symptoms of ADHD in their children and how seriously these symptoms affect their children’s daily functioning and quality of life.
The upshot of the first study is that the genetic changes seen in children with ADHD often involve the same genes that are associated with autism. This finding helps explain why children with autism often have ADHD symptoms. In other words, if these disorders share a genetic risk factor, it’s logical that they often occur in the same individuals. Genetic insights, in turn, can help scientists understand underlying causes and, so, may improve how we diagnose and treat these issues.
The second study, described in our science news section, helps clarify both how commonly children on the autism spectrum are affected by ADHD symptoms and documents how this affects their daily function and quality of life. Perhaps the most notable observation was that, even though over half of the children in the study had ADHD symptoms that worsened both daily function and quality of life, only about 1 in 10 was receiving medication to relieve such symptoms.
Clearly, we need more research on whether standard ADHD medications benefit children struggling with both autism and hyperactivity and attention deficits. However, studies have long shown that these medications improve the quality of life of many children with ADHD alone. Autism specialists such as Dan Coury, M.D., medical director of Autism Speaks Autism Treatment Network (ATN), recommend that parents discuss with their child’s physician whether a trial of such medications could be of benefit. (Dr. Coury co-authored the second study.)
On a deeper level, this research raises a question: Why is it, given the same genetic changes, some children develop autism alone, some develop autism and ADHD symptoms, and some develop neither—or something completely different?
I and other geneticists have seen how a given genetic change can alter normal development in various ways—if it does so at all. We have good evidence, for example, that outside influences affect how and whether autism develops in those who are genetically predisposed to it. These influences include a variety of stresses and exposures during critical periods of brain development—particularly in the womb and around the time of birth.
Still, by better understanding how altered genes produce symptoms—be they hyperactivity or social difficulties—we gain important insights into how to develop treatments that can improve the daily function and quality of life of those affected.
Ultimately there’s no substitute for working with your child’s physician and behavioral specialist to address your child’s behavioral challenges and needs within the context of your goals and values. To this end, the specialists at Autism Speaks Autism Treatment Network have developed a medication decision aid—“Should My Child Take Medicine for Challenging Behavior?”—available for free download on our website. Please let us know what you think.
Family Services Office Hours – 09.28.11
Office Hours easily connects families to a wide variety of autism-related resources, including Family Services Tool Kits, and the Autism Speaks Resource Guide, an online national database of autism providers and resources searchable by state and zip code.
Family Services Office Hours is designed to quickly provide access to resources that are available and free to the entire autism community.
The Office Hours sessions are staffed by ART coordinators who are specially trained to connect families affected by autism to resources.
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Has anyone studied how to help toilet-train children with ASD?
This week’s answer comes from two of the clinicians who work within our Autism Treatment Network (ATN) and our Health Resources and Services Administration funded Autism Intervention Research Network on Physical Health (AIR-P). Both helped write the Autism Speaks Toileting Toolkit for parents, which will become available this fall.
Psychologist Terry Katz, PhD, of our Denver ATN Center
and
Psychologist Amanda Santanello, PsyD, of the Kennedy Krieger Institute ATN Center in Baltimore, Maryland.
Around half of all children with an autism spectrum disorder (ASD) learn to use the toilet later than other children. In the Autism Speaks ATN/AIR-P Toileting Tool Kit due out this fall, we talk about why your child might have trouble and provide tips for achieving success. Here are some important points:
Toileting Challenges with ASD:
* Physical: Talk with your doctor about medical reasons that may make toileting more difficult for your child. These can include constipation, and kidney, urinary tract, or bladder problems.
* Language: Language delay can make it difficult for a child to ask to use the toilet. Children may need other methods to communicate their needs.
* Fears: Your child may be afraid of sitting on the toilet or hearing it flush.
* Body cues: Some children with autism have difficulty sensing the “need to go” and may not realize that their clothes are wet or soiled.
* Dressing: Can your child easily pull up and down his or her pants? This may need to be addressed.
* Need for sameness: Your child may have developed a habitual way of toileting and, so, may resist doing so “your way.”
* Using different toilets: Your child may have difficulty toileting in new places—such as school vs. home.
Tips for Parents:
Sit for six: Set a goal for six toilet sits per day. Start out slow. First trips may only last 5 seconds. Encourage boys to sit to urinate until they regularly have bowel movements on the toilet.
Don’t ask, tell: Take your child to the toilet and tell them it is time to go. Don’t wait for them to tell you that they need to go.
Stick to a schedule: Take your child to the toilet at the same times each day. Track when they urinate or have bowel movements and use those times if possible. Otherwise plan toilet trips around your usual routine. And think ahead: Take your child to the toilet before he or she starts an activity that will be difficult to interrupt.
Communicate: Use the same simple words, signs, or pictures during each trip. Talk with other people who work with your child. Everyone on the team needs to use the same toileting communication plan.
Reward: Praise your child for trying. Give your child a favorite treat or reward right after going in the toilet. Be matter-of-fact when accidents happen.
Consider comfort: Your child needs to feel safe on the toilet, with feet supported for balance. Also address sensory difficulties your child may have with sounds, smells, lights, or textures in the bathroom.
These are just a few of the ideas we discuss in the forthcoming Autism Speaks ATN/AIR-P Toileting Toolkit.
Please remember: Toileting can be difficult for children with an ASD. One study found that they needed a year and a half of training, on average, to stay dry during the day and more than two years to become bowel trained. So don’t become discouraged. Be consistent. Build routines. Talk with your doctor. And look for the launch of the Autism Speaks ATN/AIR-P Toileting Tool Kit. We’ll keep you posted here in the blog and on the ATN’s Tools You Can Use section of the Autism Speaks science pages.
The Autism Speaks ATN/AIR-P Toileting Tool Kit is the product of on-going activities of the Autism Treatment Network, a funded program of Autism Speaks. It is supported by cooperative agreement UA3 MC 11054 through the U.S. Department of Health and Human Services (HHS), Health Resources and Services Administration (HRSA), and Maternal and Child Health Research Program (MCHB) to the Massachusetts General Hospital. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the MCHB, HRSA, or HHS.
$12M in Funding for Research and Treatment!
Autism Speaks’ Autism Treatment Network (ATN) has competed successfully for another round of federal funding—$12 million—to continue to serve as the Autism Intervention Research Network on Physical Health (AIR-P). Read more in science news at autismspeaks.org…
New Blood Work Tool Kit for Families and Practitioners
Posted by pediatric neuropsychologist Cassandra Newsom, PsyD, director of psychological education for the Treatment and Research Institute for Autism Spectrum Disorders (TRIAD) of Vanderbilt University Medical Center (Nashville, Tennessee), a member of Autism Speaks’ Autism Treatment Network.
On a daily basis, I interact with families and their amazing children with autism spectrum disorders (ASDs). Like my colleagues, I have seen many children with ASDs struggle with the routine blood work associated with their healthcare and participation in autism research programs. Parents, too, often become anxious as the time for blood work draws near. Nurses and phlebotomists, in turn, sometimes struggle ineffectively to communicate with and calm these young patients. Clearly, the resulting stress worsens the discomfort associated with blood work and creates negative associations for all involved in the process.
For these reasons, our team wanted to pool our knowledge about pediatric pain management—particularly techniques proven to help calm children with ASD. We wanted to improve everyone’s experience—that of the child, parents, and healthcare providers. And, so, we set about developing two of this month’s new ATN tool kits: “Take the Work Out of Blood Work: Helping Your Child with ASD” and “Take the Work Out of Blood Work: Helping Your Patient with ASD”
To help us, we recruited a talented group of graduate students and post-doctoral fellows from our Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program. Our LEND trainees set out across Vanderbilt’s campus—interviewing pediatric pain specialists, behavioral therapists, hospital-based child life specialists, and experts in developmental disabilities. They observed blood draws in a research clinic for children with developmental disabilities and scoured available research in the pediatric pain literature. Each team member made unique contributions to the final product based on their backgrounds in psychology, medicine, speech-language therapy, and developmental disabilities.
The resulting first draft of the tool kit focused on coping, distraction, and positive behavioral supports. We then solicited feedback from a parent advisory group at the Children’s Hospital Los Angeles, a fellow Autism Treatment Network site. As you would expect from such involved and dedicated parents, they helped us better envision the experience from the child’s perspective and provided insights into how we could encourage compassion and empathy on the part of the medical providers. They also reminded us that parents are the experts when it comes to their own child. So listen!
The team created colorful, engaging visual supports that tap into the strong visual processing abilities shared by many children with ASDs. In “test driving” the tool kits, we saw how these aids improved communication between medical providers, parents, and children. (Parents can even decide how much detail is appropriate for their child by selectively printing those visuals they feel provide enough—but not too much—detail.) Rewards are another important aspect of our guide, one that parents can tailor to their child’s interests. We also considered a child’s sensory needs in designing distraction activities and providing tips on setting up the clinic environment. Finally, both parent and provider tool kits actively promote collaboration between all treatment team members.
Our tool kits are now beginning to find their way into the hands of medical providers, researchers, and parents; and the response thus far has been overwhelmingly positive.
We hope you will download the parents or providers tool kit, give it a try, and share your experiences with us! Do you have tips for insuring successful blood draws or medical visits with your child or patient? Share your tips at atn@autismspeaks.org, and we will incorporate the best into our website at http://kc.vanderbilt.edu/asdbloodwork.
The Autism Speaks ATN/AIR-P Bloodwork Tool kits are the product of on-going activities of the Autism Speaks Autism Treatment Network, a funded program of Autism Speaks. It is supported by cooperative agreement UA3 MC 11054 through the U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Research Program to the Massachusetts General Hospital. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the MCHB, HRSA, HHS.
ADHD Symptoms in Children with Autism
The symptoms of attention deficit and hyperactivity disorder (ADHD) create significant problems for over half of all children with autism and may be both under-recognized and under-treated by pediatricians. These findings—from Autism Speaks’ Autism Treatment Network (ATN)—were presented Sunday at The Society for Developmental and Behavioral Pediatrics annual conference, in San Antonio, Texas. For more information see our news item here.
Autism Treatment Network LIVE Chat with Dan Coury, MD and Nancy Jones, PhD Transcript
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ATN Clinician Presents Webinar
Autism Spectrum Disorders Webinar
September 19, 2011 from 1 to 1:45pm (ET)
The American Academy of Pediatrics Pediatric Care Online is hosting a FREE webinar on autism spectrum disorders (ASD). This webinar will be presented by Autism Speaks Autism Treatment Network (ATN) clinician Patricia Manning-Courtney, MD, FAAP, associate professor of clinical pediatrics, pediatric developmental specialist, and medical director of The Kelly O’Leary Center for Autism Spectrum Disorders, our ATN site at the Cincinnati Children’s Hospital Medical Center.
Children with ASD are being recognized and diagnosed in increasing numbers. Early identification and treatment is key to maximizing outcome. Parents of children with ASD benefit tremendously from an informed and supportive Primary Care Provider. This webinar will focus on:
- Screening and diagnosis recommendations
- Overview of treatment approaches, including medication
- Review of current controversies
To view the webinar on Monday, September 19, please use the following URL and password:
- Webinar URL: www.talkpoint.com/viewer/starthere.asp?Pres=136861
- Password: pco0919
Additional information and resources related to autism can be found on the Autism Information page of the National Center for Medical Home Implementation Web site.
Join Our Webchat with Dr. Coury: Should My Child Take Medicine for Challenging Behavior? What Can Help My Child Stay Calm during Routine Blood Work?
Please join us Wednesday, Sept. 14 at 1 pm Eastern/10 am Pacific, for a live webchat with Dan Coury, MD, medical director of Autism Speaks’ Autism Treatment Network (ATN) and chief of developmental and behavioral pediatrics at Nationwide Children’s Hospital, in Columbus, Ohio. Dr. Coury will be answering questions related to the release of the ATN’s first two toolkits for parents and healthcare providers:
* “Should My Child Take Medicine for Challenging Behavior?” is a family decision aid that can help you work with your child’s healthcare provider to choose a treatment that matches your needs and values.
* “Taking the Work Out of Blood Work” is an aide for parents and healthcare providers who want to ease the process of routine blood work for children with autism.
You can download both of these toolkits here; and send us webchat questions in advance at sciencechat@autismspeaks.org. Thanks and chat with you soon…
