Guest post by Connie Kasari, Ph.D., Center for Autism Research & Treatment, UCLA Semel Institute
ABC 20/20 recently aired a tragic story that brings up anew the controversy surrounding the intervention called Facilitated Communication (FC). Faced with a lack of success with prior efforts, the family reached out to include FC (an intervention involving a “facilitator” who physically supports the arm of the individual as they use a keyboard to type). As the story is told, the facilitator, trained for only one hour, assisted the child in making salacious sexual abuse allegations against her father. As the investigation evolves, the case against the father falls apart. FC and the facilitator become the focus of scrutiny, while the family is torn apart.
This story will undoubtedly strike many chords with families and researchers alike. As a tragic case in point, the story highlights the desperation families feel in trying to find an intervention that can help their older, nonverbal person. Multiple research studies have rejected the benefits of FC, mainly because the purported effects of the therapy are often the thoughts of the facilitator and not the child, as was discovered in the 20/20 story (Jacobson et al, 1995). Professional organizations have not supported the use of FC with consistent position statements from the American Academy of Child and Adolescent Psychiatry (1993), the American Academy of Pediatrics (1998), American Association on Intellectual and Developmental Disorders (1994), the American Psychological Association (1994), the American Speech Language and Hearing Association (1994) and the Association for Behavior Analysis (1995). Yet parents still reach for disproven therapies, and even compel their schools to provide the therapy despite the research evidence.
Part of the issue here, is that there are few evidence -based communication interventions that have shown benefit to older, school aged children. This situation gives rise to the adoption of less effective interventions and should continue to call on researchers to pay greater attention to this group of individuals with autism. Indeed, the Interagency Coordinating Council for Autism, the National Institutes of Health and Autism Speaks have all placed a high priority on the development of innovative interventions for nonverbal individuals with autism.
While early intervention has decreased the numbers of nonverbal individuals, estimates are that between 30% and 40% of children with autism spectrum disorders remain minimally verbal, even after receiving years of interventions (NIH workgroup, 2010). Having access to communication is critical for all children. Augmentative systems can provide children with a voice, and some children have developed verbal abilities via typing or other communicative systems. Thus, the culprit in the intervention described in the 20/20 story was not the use of a keyboard but the methods used to help the child communicate. Teaching a child to use a keyboard often involves a period of physical prompting to teach the act of typing, but eventually the child should type independently, using little or no physical prompts. The addition of augmentative and alternative communication systems can have a profound effect on children’s ability to communicate, and indeed there are many cases of children who are able to type their responses or to use other augmentative systems. Witness the explosion of the iPad and speech generating applications for children with autism. These augmentative systems can result in improved communication and even increases in spoken language, although the evidence to date is anecdotal or limited to single case designs (Schlosser & Wendt, 2008).
High quality research studies are beginning to address this population of children who are school aged, and minimally verbal. Autism Speaks has funded a High Risk, High Impact intervention study on this population. The Characterizing Cognition in Nonverbal Individuals with Autism (CCNIA) intervention study is conducted at three sites: UCLA, Vanderbilt and Kennedy Krieger Institute and will finish this year.
CCNIA Intervention Study (Kasari, Kaiser, & Landa, 2009): Participants include children who are 5 to 8 years of age, produce fewer than 20 functional words, and who have already had at least two years of intensive intervention but are still not “talking”. The study utilizes an innovative design called a SMART (Sequential Multiple Assignment Randomized Trial) design (Murphy, 2005). This design recognizes the importance of consolidating early successes in treatment such that children are re-randomized to increased intensity of intervention or to the alternate intervention if they are not responding to the initial intervention to which they were randomized.
The interventions involve the merging of two evidence- based communication therapies JASPER (Joint Attention, Symbolic Play, Engagement & Regulation, Kasari et al, 2006, 2008, 2010); and EMT (Enhanced Milieu Training, Kaiser et al, 2000) with children randomized to JASPER/EMT only or to JASPER/EMT with the addition of a speech generating device. Children receive intervention twice per week for three months. Progress towards the initiation of socially meaningful communication is then evaluated. If children have met the defined criteria for improvement in communication, they stay the course for another three months. If they have not progressed they are re-randomized to receive increased intensity of the same therapy or to receive the speech-generating device if they received only the spoken language intervention initially. Children are followed up for three months after the six months of intervention.
While we won’t know the benefit of these interventions until the study is completed later this year, we believe that minimally verbal school aged children require an intervention approach that simultaneously (a) consolidates their early successes in intervention, and (b) adapts interventions to maximize their effects if there are early indications of non-response to the interventions. Sequential adaptations of intervention protocols may be needed to place all minimally verbal individuals on a positive, long-term course toward developing expressive language.
Interagency Autism Coordinating Committee (2011). 2011 IACC Strategic Plan for Autism Spectrum Disorder Research. http://iacc.hhs.gov/strategic-plan/2011/index.shtml.
Jacobson JW, Mulick JA, Schwartz AA. (1995). A history of facilitated communication: Science, pseudoscience, and antiscience: Science Working Group on Facilitated Communication. American Psychologist, 50, 750-765.
Kaiser, A. P., Hancock, T. B., & Nietfeld, J. P. (2000). The effects of parent-implemented enhanced milieu teaching on the social communication of children who have autism. Journal of Early Education and Development [Special Issue], 11(4), 423-446.
Kasari, C., Freeman, S., & Paparell, T. (2006). Joint attention and symbolic play in young children with autism: A randomized controlled intervention study. Journal of Child Psychology and Psychiatry, 47, 611-620.
Kasari, C., Gulsrud, A.C., Wong, C., Kwon, S., & Locke, J. (2010). A randomized controlled caregiver mediated joint engagement intervention for toddlers with autism. Journal of Autism and Developmental Disorders, 40, 1045-1056.
Kasari, C, Kaiser, A., & Landa, R. (2009). Developmental and Augmented Intervention for Facilitating Expressive Language. Sponsored by Autism Speaks, Grant 5666.
Kasari, C., Paparella, T., Freeman, S., & Jahromi, L.B. (2008). Language outcome in autism: Randomized comparison of joint attention and play interventions. Journal of Consulting and Clinical Psychology, 76, 125-137.
Murphy, S.A. (2005). An experimental design for the development of adaptive treatment strategies. Statistics in Medicine, 24, 1455-1481.
Schlosser, R., Wendt, O (2008). Effects of augmentative and alternative communication intervention on speech production in children with autism: A systematic review. American Journal of Speech-Language Pathology, 17 , 212–230.
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.
Usually an older sibling looks after younger ones, but all my life I have cared for my brother, who has lived away from home since he was six years old.
Phillip is severely autistic. He is able to dress himself and enjoys looking good. He is unfailingly kind, endearing and loves to be helpful and busy.
But people with autism face real challenges in the areas of communication and social skills—and Phillip is no exception. He doesn’t speak. He understands when you talk to him about subjects with which he is familiar—although his responses can seem disconnected at times.
He communicates through a limited knowledge of sign language and sometimes uses a book of symbols, pointing to images that express his feelings and needs.
Like others who suffer with autism, Phillip has Obsessive Compulsive Disorder (OCD). When, many years ago, he was given the job of marking off the current day on the school’s calendar, it became a necessary daily ritual which he carried out even if he interrupted meetings taking place. Realizing that marking calendars was one of Phillip’s obsessive needs, I gave him several pocket calendars so he can now mark off each day with focused intensity.
An inspired educator once introduced Phillip to needlepoint. In the 21st century, needlepoint, a form of canvas stitchery, is often regarded as a tedious craft with anachronistic overtones. This is not surprising, considering that it goes back to the small, slanted stitches of Egyptian tent-makers thousands of years ago.
Since Phillip is meticulous and revels in repetitive tasks, he immediately immersed himself in this craft. I am an abstract painter and we often collaborate on projects. In fact, our creative collaboration provides a very special connection between our worlds: I design—creating colorful images on a needlepoint canvas—and Phillip stitches in a cornucopia of colors.
Needlepoint gives him a sense of security in and control over his limited universe. He feels empowered in sharing his latest creations and, like all artists, he is very proud of them. I would like to think his efforts would have made famed Bauhaus teachers and color theorists, Johannes Itten and Joseph Albers, proud as well!
Another window into Phillip’s world is a method developed in Australia in 1977 called “facilitated communication.” Phillip can communicate by typing with one finger as a trained facilitator holds his wrists in a comfortable leverage position.
There is some controversy about facilitated communication. Those who support this method believe that it reveals a literacy and a previously undisclosed, higher intellectual functioning in those with autism, and that autistic people exhibit a capacity for symbolic communication.
However, critics claim that the facilitator may influence the response. To avoid this, our family would ask Phillip questions to which the facilitator did not know the answers. Since his responses were accurate, we knew that the facilitator could not be manipulating Phillip’s responses.
Although Phillip spells phonetically, what amazed us was that they were organized sentences written in a rather formal structure (e.g. “I am very fortunate to have Lena as my sister. She is my best friend.”) Perhaps most importantly, this gave us an awareness of the depth of Phillip’s understanding. We already knew, from personal observations, that he was capable of conceptual organization and were relieved that Phillip, in this small way, could finally make his voice heard in the world.
Sadly, his voice is not always heard. Many people feel uncomfortable around individuals who are mentally challenged, and I have become aware that families who struggle with the challenge of disabilities face social isolation. People may perfunctorily inquire about Phillip but then quickly move on to another subject; very few go beyond polite questions to discover that Phillip is a person with strengths and weaknesses that extend beyond the label of autism.
Still, there are friends, who not only acknowledge Phillip but respect him and take note of his interests. They often send him cards, yarn and calendars—gestures of thoughtfulness that deeply move me.
Phillip is unaware of the great influence he has exerted on my own life. Through helping him develop skills and observing his creative process, I have developed patience, endurance and a depth of compassion I never knew I possessed as well as an acceptance of both the limitations and vast possibilities inherent in each of us. All of these qualities play such an important role in my personal and professional relationships.
And while I sometimes wish I could look inside his brain to understand the complexity of his world, I think of Phillip, my little older brother, as my personal gift. But like Phillip, I can’t put what he means to me into words.
This article first appeared on Guidepost.com and is reprinted here with permission.
This “In Their Own Words” essay is written by Lena Rivkin of Los Angeles, Calif.
If you have a story you wish to share about your personal experience with autism, please send it to email@example.com. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.