All Children Deserve Access to Communication
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.