You may have seen recent headlines generated by the controversial French film, The Wall, which highlights the persistence of inappropriate autism treatments in France. There, families with a child who has autism are often offered outdated psychoanalytical therapies based on the widely debunked Freudian idea that autism results from being raised by an emotionally cold mother (the so-called “refrigerator mom” theory of autism).
The persistence of such ineffective treatments and outdated attitudes reminds us of the need to continually educate the public and the world medical community of the effectiveness of modern therapies for autism—including behavioral interventions such as Applied Behavioral Analysis. For more information, please see the “How Is Autism Treated?” page of the Autism Speaks website and Autism Speaks’ 100 Day Kit, created specifically for newly diagnosed families to make the best possible use of the 100 days following their child’s diagnosis of autism.
Today’s “Got Questions?” answer comes from speech-language pathologists Cynthia Green, Kameron Beaulieu, and Jill Dolata (left to right in photo) of the Autism Speaks Autism Treatment Network (ATN). Their ATN work at the Oregon Health & Science University’s Child Development and Rehabilitation Center involves individualized parent training using a 24-week program that improves children’s social communication skills.
Today, parents and therapists have many new applications and devices that support a child’s nonverbal communication. First and foremost, however, we strongly recommend an insightful look at how your nonverbal child communicates—in other words, how he sends messages to others.
As you and other parents of children with autism know well, non-verbal does not mean non-communicative. So we always want to start with a good understanding of children’s current communication level before attempting to help them move to the next level.
We regularly use the Communication Matrix, a skills assessment designed to evaluate children’s communication abilities. This tool is unique in measuring all possible communicative behaviors, including: pre-intentional (involuntary actions, including crying when wet or hungry); intentional (actions such as fussing and turning away that are not primarily intended for communication); unconventional (tugging, crowding to get attention); conventional communication (head nodding, pointing, etc.); concrete symbols (pantomime, “buzzzzz” to mean “bee”); abstract symbols (single words, manual signs); and language (oral and written word combinations, American Sign Language).
To be successful communicators, children need to see that their actions influence those around them, and they must want to communicate. Sometimes, it’s difficult to determine when nonverbal children are sending intentional messages—particularly when they prefer to play by themselves, engage in self-stimulating behaviors or have difficulty sustaining interactions.
There are several programs designed to initiate positive interactions and increase communication in children with autism, including First Things First, Indirect Language Stimulation, DIR/Floortime, the Hanen program, the Early Start Denver Model, and the Autism Parent Training Program. These programs have many similar components including putting yourself at your child’s eye level, allowing your child to direct activities (following his lead), and imitating your child’s behavior. These strategies help forge a connection of interests between you and your child and can support your child’s desire to communicate.
Once children communicate using concrete or abstract symbols, they may benefit from having access to additional communication tools. It helps to remember that we all use a variety of communication methods, including eye contact, facial expressions, body language, tone of voice and gestures. So you might want to start with a system of gestures or sign.
Other low-tech tools include picture symbols and PECS . Some children seem to respond to tangible symbols such as an actual key for “let’s go outside” or a cup for “I’d like a drink.” From the use of tangibles, families can move to photographs of familiar items and eventually to more abstract symbols. Children at this stage may benefit from Tangible Symbol Systems.
Finally, parents and therapists now have access to a number of technological devices and options, from a tape player with simple buttons for playing prerecorded messages and keyboards for typing messages to sophisticated voice output devices and specialized iPhone/iPad applications.
We hope you’ll have fun exploring these options with your child, ideally under the guidance of a therapist well versed in the best evidence-based practices. And please stay tuned for the fall release of the new Autism Speaks ATN brochure on Visual Supports and ASD. We’ll be posting it for free download on the ATN’s Tools You Can Use webpage.
Readers are urged to use independent judgment and request references when considering any resource associated with diagnosis or treatment of autism or the provision of services related to autism. Autism Speaks does not endorse or claim to have personal knowledge of the abilities of references listed. The resources listed in these pages are not intended as a referral, or endorsement of any resource or as a tool for verifying the credentials, qualifications, or abilities of any organization, product or professional. The contents of this blog are solely the responsibility of the authors and do not necessarily represent the official views of Autism Speaks, the Autism Treatment Network and/or the Autism Intervention Research Network on Physical Health.
Nancy Jones, Ph.D., Director of the Autism Treatment Network and Clinical Trials Network
In one of the final sessions at IMFAR, several presentations provided updates in three important areas of intervention and treatment research.
Using technology to make interventions more accessible
Laurie Vismara, Ph.D. from UC Davis, MIND Institute reported on a new approach to make training for families on the Early Start Denver Model (ESDM) more accessible. Typically, families and clinicians attend training and coaching sessions in person at the clinic. Using web and DVD technology, Dr. Vismara and her colleagues have developed a program where families use web-based video conferencing for training sessions with a therapist. Families also had access to an interactive DVD including modules covered in training sessions that provide summaries of the key sessions, video examples, supportive videos, and feedback exercises. The study examined how this new web-based approach compared to in-person sessions. In a small pilot group of ten families, the researchers found that parents’ ability to implement the activities from the intervention was comparable to that found in families trained in-person. Improvement in the children’s word production and imitation skills were also comparable to children whose families had in-person ESDM sessions. A manual of this web-based approach is currently being developed. This approach holds promise to make interventions accessible to more families and to ensure children get timely intervention of the appropriate intensity.
Effectiveness of melatonin for sleep disorders in ASD
Many families and individuals with ASD report sleep problems. To alleviate these sleep problems, some individuals use melatonin, a hormone that is readily available and sold over-the-counter as a supplement. But despite melatonin’s easy accessibility and wide-spread use, there are not a large number of systematic studies of its use for sleep disorders in ASD.
Beth Malow, M.D., a neurologist and sleep specialist, and her team at Vanderbilt University Medical Center (VUCM), reported results from a pilot open-label study of melatonin for improving sleep onset. Many children suffer from sleep onset insomnia, which is a delay in their ability to fall asleep. The study examined the effectiveness of using melatonin to help children (ages 3-10) who have difficulty falling asleep (more than 30 minutes delay on more than three days a week). In addition to the melatonin, all families also were provided with sleep education on how to improve sleep. Twenty-four of the twenty-five children in the study showed an improvement at moderate doses that were well tolerated, decreasing the time it took them to fall asleep on more than three days a week. This study was an open label study, which means that families were aware of the treatment they were receiving. This study provides initial evidence for the potential effectiveness and safety of the treatment and also preliminary information to guide development of a planned multi-site, randomized controlled trial of melatonin.
Arbaclofen shows potential to treat social and communication problems in ASD children with high irritability
In a previous clinical trial on individuals with Fragile X, arbaclofen was found to lessen children’s tendency to withdraw socially and improved social behavior. The study reported at IMFAR examined the effectiveness of arbaclofen in improving social and communication skills in children with ASD. The children were 6-17 years of age, had a diagnosis of autism or PDD-NOS and also had high levels of irritability. The study was an 8-week, open-label study. Craig Erikson, M.D., of Indiana University School of Medicine reported the findings of the multi-site trial. Key improvements were noted for irritability, social withdrawal and communication. A double-blind, placebo-controlled trial is planned to begin early in 2011.
A New York Times’ article on autism highlighted the challenges of obtaining an early diagnosis and treatment for parents who are facing a second child who is at risk for ASD. The story follows a family who has a diagnosed 5 year old son and a 7 month old baby boy who is showing signs of departing from a normal developmental trajectory, especially his interactions with other people.
The story is an excellent portrayal of the challenges and successes of a family living with autism and features two scientists engaged in the Autism Speaks’ High Risk Baby Siblings Research Consortium, Sally Rogers, Ph.D. and Sally Ozonoff, Ph.D. The ability to distinguish autism from variations in development that lead to an otherwise normal outcome is limited at the early ages, but research is finding new ways to identify the earliest signs of autism risk. Since the best bet for a good outcome is early, intensive behavioral intervention, identifying these early signs are extremely valuable.
The story highlights the Early Start Denver Model, an intervention approach developed by Rogers and Geraldine Dawson, Autism Speaks’ Chief Science Officer. This intervention method, which was evaluated in a controlled trial, can be used with children at risk for ASD as young as 12 months of age.
While early intervention methods for toddlers with ASD are becoming increasingly available, there are still many families that have difficulty accessing early intervention services. Autism Speaks is working to disseminate research that has been established as best practices while simultaneously pressing for more research in needed areas. Our partnership with the Early Autism Risk Longitudinal Investigation (EARLI) has helped to broaden the participation and scope of this important study of early risk factors. In terms of intervention, Autism Speaks’ support of the Toddler Treatment Network is focused on both the dissemination and further research needs in young children identified with autism. At the same time, our continued advocacy for ending insurance discrimination for behavioral health services for children with autism (www.autismvotes.org ) is essential to our goal of providing every child with autism the services they need and deserve.
By strategically investing our scientific resources in areas of need and advocating for families, Autism Speaks seeks to improve the outcomes for those struggling with ASD today and to lessen the struggles for those who will be diagnosed tomorrow.