I want to share with you the excitement I felt at this week’s strategic planning meeting for our new Move the Needle Initiative. Autism Speaks brought together experts in the field of early detection and intervention for autism spectrum disorder (ASD), with representatives of federal agencies such as the U.S. Health Resources and Services Administration, the Centers for Disease Control and Prevention and the National Institutes of Health to create a national plan for lowering the age of diagnosis for ASD and improve access to high-quality early intervention services for all children with autism.
While researchers have made great progress in developing screening and diagnostic tools, the average age of diagnosis remains stubbornly close to 5 years, even higher among some ethnic minorities. Even after their children are diagnosed, many families lack access to the best early intervention therapies.
Our meeting was a great opportunity for exchanging ideas between disciplines. We heard from family members, pediatricians, policy makers, clinicians and researchers who are evaluating the best ways to put effective strategies and tools into pediatrician offices and the broader community. Representatives from all part of Autism Speaks attended to help us identify ways to harness our powers together to “Move the Needle.”
Experts from outside of autism, including one from the field of breast cancer, shared their knowledge of effective ways to improve early detection and access to services. On the first day of the meeting, we heard about the latest findings on screening, diagnosis, early interventions, access to services in underserved communities and innovative technologies that have the potential to improve access among underserved children and their families.
On day two, we split into working groups to develop solutions to the barriers that have interfered with the delivery of earlier diagnosis and treatment in our communities. This included taking the first steps toward creating a new agenda for collaboration between public and private organizations. We brainstormed ideas on how this could be done as soon as possible by building on the tremendous progress of recent years.
Though I have only begun to pull together our thoughts and ideas, I want to share a few important issues that floated to the top of the conversation:
- Family empowerment was a common theme. Studies clearly show that greater engagement and empowerment on the part of families decreases parental stress and increases satisfaction with services. Likewise, we know that children who have the best outcomes tend to be those whose parents are actively engaged in treatment. We discussed several strategies to empower families.
- We explored a concept we call task shifting, to help address service shortages in many communities. We recognize that, through training, we can tap professionals such as nurses, “birth-to-three” service providers and community volunteers to provide services such as screening and family follow up. This approach can provide families with more professionally delivered services than, say, the typical pediatrician can offer.
- We agreed that we must harness the potential of technology. Smart phones, iPads and video conferencing are all ready to be developed as tools for improving access to services – especially important for underserved populations such as children in rural areas.
- Recognizing that pediatricians play a central role in autism screening, we discussed many ideas for enhancing pediatrician awareness and skills, including their ability to connect families with the services they need.
These are just a few ideas that came out of this inspiring meeting. It provided a great start to realizing our long-term vision of creating a national agenda through private-public partnerships that focus our investments in research and services in ways that will lower the age of diagnosis and improve access to quality early interventions for all children.
Your feedback means the world to us. Please leave a comment and send us an email to ScienceChat@autismspeaks.org.
In December 2010, Autism Speaks joined the Albanian Children Foundation and the Albanian Ministry of Health to develop a regional partnership that can advance autism services and research in South-East Europe. At that meeting, members of five ministries of health (Albania, Bosnia and Herzegovina, Croatia, Macedonia and Slovenia), the Albanian Children Foundation and Autism Speaks pledged to collaborate with support from the World Health Organization (WHO).
Specifically, the newly formed South-East European Autism Network (SEAN) pledged to:
- Raise public and professional awareness in the region
- Provide information resources for parents and professionals
- Collect public health data on the locations of individuals with autism
- Conduct professional training in the areas of diagnosis, clinical management and early intervention
- Provide evidence-based services for both children and adults
- Support the establishment of a regional committee to meet biannually with the goal of developing guidelines and recommendations on public health and autism
Over the last 12 months, Autism Speaks has been working with our partners in the region to ensure that the network is properly organized, identify national coordinators and grow the SEAN membership. Bulgaria, Kosovo and Montenegro recently signed the pledge; and Greece and Serbia may also soon join.
Last week, I and Andy Shih, Ph.D., Autism Speaks vice president for scientific affairs, attended the first official SEAN network meeting, held in Ljubljana, Slovenia with the support of the Slovenian Ministry of Health and the Institute of Autism Spectrum Disorder. Over 300 people attended this conference for national coordinators, local professionals, researchers and families.
Among the speakers was Antonio Persico, M.D., from Campus Bio-Medico University in Rome, who talked about the importance of multi-disciplinary approaches to help identify persons with autism. Connie Kasari, Ph.D., from University of California Los Angeles, presented on current models of early intervention and evidence for its delivery in schools. Lynn Brennan, Ph.D., an independent Applied Behavior Analysis (ABA) consultant, introduced a new video-based parent training ABA program she is developing in collaboration with Deborah Fein, Ph.D., from the University of Connecticut.
The conference was followed by a meeting for the national coordinators, the SEAN secretariat (Albanian Children Foundation) and technical advisors from WHO and Autism Speaks. Andy delivered the welcome alongside representatives from the Slovenian Ministry of Health and the Slovenian Ministry of Labour, Family and Social Affairs.
The national coordinators made short presentations on the state of autism care and research in their country. Though these countries vary greatly in the degree to which they’ve addressed autism, all face common challenges. In many cases, for example, diagnostic services are not available outside of a country’s capital city. Many countries simply lack the resources and manpower to diagnose the increasing number of children with autism who are being referred to their clinics. In addition, all the national coordinators spoke of the need to have more diagnostic, screening and awareness materials translated into their national languages. They also described a general lack of information on how many children are affected by autism within each country and a lack of public health infrastructure to identify undiagnosed children and adults.
In prioritizing SEAN’s first projects, we agreed to design a survey to assess baseline public health data from each country. This will help each country assess what it needs to improve clinical practice and measure future progress.
The network will also work together to translate Autism Speaks tool kits and other awareness materials and to increase national and regional awareness through World Autism Awareness Day and Light It Up Blue.
The network’s training priorities will revolve around diagnosis and early intervention. Autism Speaks will organize a training workshop at the Regional Centre for Autism in Albania later this year. The network also agreed to explore ways to work more closely with the WHO South-East European Health Network.
SEAN members plan to meet again in April 2013 in Sarajevo, Bosnia and Herzegovina. At that time, the national coordinators will report on the progress they have made in improving awareness and services for families within the region since these first crucial meetings.
Our efforts in South-East Europe are an important part of our Global Autism Public Health Initiative (GAPH). GAPH embodies Autism Speaks’ commitment to the global mission of improving the lives of all individuals with autism. Our international partners include families, researchers, institutes, advocacy groups and governments in over 30 countries. By working together, our partners contribute significantly and collectively to a greater understanding of autism.
Today’s “Got Questions?” answer comes from clinical psychologist Jeffrey Wood, Ph.D., of the Center for Autism Research and Treatment at the University of California, Los Angeles. The recipient of three Autism Speaks grants, Wood has extensively studied anxiety in elementary school and adolescent children with autism.
Anxiety is common among children and adults with autism spectrum disorder (ASD). Research suggests that at least 30 percent of children withASDalso have an anxiety disorder such as social phobia, separation anxiety, excessive worry/rumination, obsessive compulsive disorder or a phobia such as extreme fear of spiders or loud noise. Indeed, many of the children involved in our ASD research suffer multiple anxiety disorders.
It’s important to remember that anxiety can range from fluctuating, mild and completely understandable to unremitting, severe and irrational. Most people experience some form of anxiety on a regular basis, and this generally involves some degree of physical discomfort as well as negative mood.
Moderate levels of anxiety can actually be a positive, motivating force to increase one’s level of effort and attention when working or socializing. However, research on how children adapt to different settings (academic, athletic, social, etc.) suggests that high levels of anxiety can interfere with academic and social success.
Several types of cognitive behavioral therapy (CBT) have been developed to address anxiety in children with ASD, with promising results from several clinical research centers. Techniques include challenging negative thoughts with logic, role-play and modeling courageous behavior, and hierarchical (step by step) exposure to feared situations.
We and others have developed programs using modified versions of CBT that was originally developed for typically developing youth. These directly address problematic levels of anxiety in children with ASD. Several of these programs incorporate “special interests” to motivate children to engage in treatment activities during weekly sessions. For example, the therapist may use favorite cartoon characters to model coping skills, or intersperse conversations about a child’s special interests throughout the treatment sessions to promote motivation and engagement.
Depending on the program, these treatment sessions usually last 60 to 90 minutes each and extend over a course of 6 to 16 weeks. Most treatment plans also require parent involvement and weekly homework assignments.
Results from our randomized clinical trial, case studies and related reports indicate that most children with ASD who complete such programs experience significant improvements in anxiety as well as some improvement in social communication skills and other daily living skills. 1-9
We and others continue to conduct research on these and related behavioral interventions for relieving anxiety. At present these intensive and scientifically studied treatment programs are available primarily at a small number of autism treatment centers. We hope that further research and dissemination efforts will make them become more accessible to families throughout North America and elsewhere.
1. Wood JJ, Gadow KD. Exploring the nature and function of anxiety in youth with autism spectrum disorders. Clinical Psychology: Research and Practice. (In press)
2. Wood JJ, Drahota A, Sze K, Har K, Chiu A, Langer DA. Cognitive behavioral therapy for anxiety in children with autism spectrum disorders: a randomized, controlled trial. Journal of Child Psychology and Psychiatry. 2009;50(3):224-34.
3. Sze KM, Wood JJ. Enhancing CBT for the treatment of autism spectrum disorders and concurrent anxiety: a case study. Behavioral and Cognitive Psychotherapy. 2008;36:403-9.
4. Chalfant AM, Rapee R, Carroll L. Treating anxiety disorders in children with high functioning autism spectrum disorders: a controlled trial. Journal of Autism and Developmental Disorders. 2007;37(10):1842-57.
5. Lang R, Regester A, Lauderdale S, Ashbaugh K, Haring S. Treatment of anxiety in autism spectrum disorders using cognitive behaviour therapy: A systematic review. Developmental Neurorehabilitation. 2010;13(1):53-63.
6. Reaven JA, Hepburn SL, Ross RG. Use of the ADOS and ADI-R in children with psychosis: importance of clinical judgment. Clinical Child Psychology and Psychiatry. 2008;13(1):81-94.
7. Scarpa A, Reyes NM. Improving emotion regulation with CBT in young children with high functioning autism spectrum disorders: a pilot study. Behavioural and Cognitive Psychotherapy. 2011;39(4):495-500.
8. White SW, Albano AM, Johnson CR, et al. Development of a cognitive-behavioral intervention program to treat anxiety and social deficits in teens with high-functioning autism. Clinical Child and Family Psychology Review. 2010;13(1):77-90.
9. Sofronoff K, Attwood T, Hinton S. A randomized controlled trial of a CBT intervention for anxiety in children with Asperger syndrome. Journal of Child Psychology and Psychiatiry. 2005;46(11):1152-60.
Read more autism research news and perspective on the science page.
The international journal Autism released a new podcast in its Autism Matters series. Sven Bölte, Ph.D., director of Sweden’s Karolinska Institute Center for Neurodevelopmental Disorders, discusses his research on gender differences in cognitive function among high-functioning persons with autism spectrum disorder. Autism Matters podcasts are hosted by University of London psychologist Laura Crane, Ph.D.
The series is designed for a broad audience and aims to showcase the latest research published in the journal with an emphasis on real-world relevance.
Posted by Elizabeth Shick, DDS, MPH, assistant professor at Children’s Hospital Colorado and the University of Colorado School of Dental Medicine, one of 17 Autism Speaks Autism Treatment Network (ATN) sites across North America.
As a dentist, I can only hope that when I say “open wide,” that’s exactly what the person sitting in my dental chair does. When I see children in my practice, I know I won’t get my wish every time. Many children with autism spectrum disorder (ASD) have difficulty following directions during routine dental cleanings. Nonetheless, I love working with these kids and their families. So I’ve adapted my practice so that everyone involved with these wonderful patients gets the most out of each visit.
A few years ago, for example, I had a visit I will never forget. The family had not one but two sons with autism. My receptionist greeted the family and after consulting with the parents, we decided it would be best for me to see the six year old first, and then see his eight-year-old brother. He came into my small examination room with his mom and immediately began pacing and staring at the floor as if looking for something he had lost. I asked him to sit in the chair. He didn’t respond or look up. It was clear that the bag of tricks I learned in dental school wasn’t going to get him to cooperate.
To coax him into my examination chair, I asked his mom to hold his hand and help steer him into the chair. She continued to hold his hand during the entire visit. I made sure not to rush through with my typical routine. Instead, I showed him the mirror and toothbrush I was going to use and explained to him, each step of the way, what I was going to do next.
After a while, he began to make eye contact with me. He even smiled. He didn’t do everything I asked, and he struggled through certain parts of the appointment, sometimes trying to sit up or jump off the chair. But we got done what we needed to—a dental cleaning, a thorough dental exam, and a fluoride application. Then his dad came in with his older brother, and we did it all again.
During dental school, few students practice treating patients with ASD. For this reason, many dentists may feel uncomfortable when caring for patients with autism, and it can be difficult for families to find a dentist who understands their child’s needs.
I have been fortunate to work with some wonderful autism specialists here at Children’s Hospital Colorado. With support from Autism Speaks’ Autism Treatment Network (ATN), we created Treating Children with Autism Spectrum Disorders: A Tool Kit for Dental Professionals. It is designed to help dental professionals like myself understand autism and work with parents to help make office visits successful. I often use the recommendations in the tool kit in my own practice.
With autism on the rise, it’s becoming more and more important that dental providers—including dental hygienists, dental assistants and even front desk staff—have the most current information about autism and know how to interact with families affected by it. It is our sincere wish that more dentists will be empowered by our tool kit to welcome these children into their practice and help make their visits a positive experience. We hope you will share the new Dentist Tool Kit with your dental care providers. You can download for free, here. Also see Autism Speaks Dental Tool Kit for families, here.
Please join us TODAY for a live webchat with neurologist and autism sleep expert Dr. Beth Ann Malow, M.D., of Vanderbilt University Medical Center, at 1 pm Eastern (noon Central; 11 am Mountain; 10 am Pacific).
Dr. Malow will be fielding questions on sleep issues affecting individuals on the autism spectrum and their families. This webchat is being held in tandem with the same day release of Sleep Strategies for Children with Autism: A Parent’s Guide, the latest free tool kit published by the Autism Speaks Autism Treatment Network (ATN) as part of its participation in the Autism Intervention Research Network on Physical Health (AIR-P). The tool kit will become available for free download on the ATN’s “Tools You Can Use” page the same day.
Joining Dr. Malow will be ATN Program Director Nancy Jones, Ph.D., who will be fielding general questions about ATN services and other Autism Speaks resources.
We hope you’ll join us:
What: Live “Sleep Chat” with neurologist and autism sleep expert Dr. Beth Ann Malow
When: Feb. 21, at 1 pm Eastern; noon Central; 11 am Mountain; 10 am Pacific
Where: Join via the Live Chat tab on left side of the Autism Speaks Facebook page.
Today’s “Got Questions?” response comes from two clinicians in Autism Speaks’ Autism Treatment Network (ATN). Neurologist and sleep specialist Sangeeta Chakravorty, M.D., is director of the pediatric sleep program at the Children’s Hospital of Pittsburgh; and psychologist and sleep educator Terry Katz, Ph.D., of the University of Colorado School of Medicine and co-founder of the Sleep Center at Children’s Hospital Colorado.
First, know that you are not alone! Many children with autism spectrum disorder (ASD) have difficulty falling asleep and staying asleep through the night. So Autism Speaks’ Autism Treatment Network (ATN) clinicians have been studying how to help them sleep better. One result of this research is the Sleep Strategies for Children with Autism: A Parent’s Guide, made possible by the ATN’s participation in the Autism Intervention Research Network on Physical Health (AIR-P). Starting next week (Feb. 21), this tool kit will become available for free download from the ATN’s Tools You Can Use webpage.
Here are some of the tips that we and our patients’ parents have found most helpful:
1. First, ask your child’s doctor to screen for any medical issues that may be interfering with sleep.
2. Prepare your child’s bedroom for sleep: Is the temperature comfortable? Does your child like the sheets, blankets and pajamas? A dark bedroom promotes sleep, but your child may need a night light for comfort. If unavoidable noises present a problem, ear plugs or a white noise machine may help. Keep the bed just for sleeping, not for playtime or time outs. And try to keep the environment consistent: e.g. If you use a night light, leave it on all night.
3. Maintain good daytime sleep habits: Have your child wake up around the same time each morning. Try eliminating daytime naps. Help your child get plenty of exercise and sunlight, but avoid vigorous physical activity within three hours of bedtime. Likewise avoid caffeinated food or drink (chocolate, cola, etc.) in the evening.
4. Prepare for bed: Keep bed time consistent, choosing a time when your child will be tired but not overtired. Develop a calm and consistent bedtime routine. Keep the lights low.
5. Consider using a visual schedule to help your child learn and track the bedtime routine.
6. Teach your child to fall asleep without any help from you. If your child is used to sleeping next to you, substitute pillows or blankets. If you can, leave the room. If this is too difficult, stay in the room without touching—for instance in a chair facing away from your child. Over a week or so, slowly move your chair toward the open door—until you’re sitting outside.
7. Teach your child to stay in bed. Set limits about how many times your child is allowed to get out of bed. Use visual reminders such as one or two bathroom and drink cards per night. Put a sign on the inside of the bedroom door to remind your child to go back to bed. If your child does get out of bed, stay calm and put him or her back to bed with as little talking as possible.
8. Reward your child for sleeping through the night, and remind your child of your expectations. Consider drawing a contract of expectations and rewards. Small rewards are best.
Helping Teens Sleep
Like young children, teens need adequate exercise and sunlight and consistent waking and bed times. However, adolescence brings hormonal changes that can delay the onset of sleepiness until late at night. Unfortunately, many middle and high schools start early! Find out if a later class schedule is an option. In any case, work with your teen to set a good bedtime. And teens who drive need to know NEVER to drive when sleepy.
Helpful steps include having your teen finish homework and turn off computer and TV at least 30 minutes before bed. Keep lights low. A light snack before bed can help growing teens sleep through the night. Finally, it’s probably a good idea to remove electronic devices, including TVs, from the bedroom.
Have more sleep questions? Join us for a live webchat with neurologist and autism sleep expert Dr. Beth Ann Malow, M.D., of Vanderbilt University Medical Center, on Feb. 21, from 1 to 2 pm Eastern. Join via the Live Chat tab on left side of our Facebook page.
Got more questions? Please send us an email at GotQuestions@autismspeaks.org.