Response to NIH Questions
Question 1: What aspects of communicative, social, and/or emotional function/dysfunction are specific and perhaps universal to autism spectrum disorders (core deficits)?
There is strong evidence that the capacity to share attention and emotion with others is specifically and universally impaired in autism. This is manifested in less joint attention and social referencing in young children with autism, less understanding of the feelings and thoughts of others in older children with autism, and less initiation of social behaviors and responsiveness to others’ feelings at all ages. Simple recognition of facial expressions is intact in many individuals with autism. However, understanding that requires the person with autism to take the perspective of another is generally limited. This deficit is also manifested in serious difficulties in the functional use (pragmatics) of language by those individuals who acquire language skills. Understanding and assessment of these deficits raise particular problems in research with nonverbal children.
Question 2: What is known regarding the developmental trajectories of these communicative and social behaviors in persons with autism spectrum disorders?
Only a few longitudinal studies of children with autism have been conducted. From cross-sectional studies, it is clear that some of the problems with joint attention and social referencing improve as children’s cognitive abilities develop. However, the deficits are manifested in higher level social and language abilities. Longitudinal studies suggest that the capacity for joint attention is linked to language acquisition but the child’s sociability predicts to gains in language skills. There is stability in individual differences in responsiveness to other’s emotions and this is independent of level of intelligence. Additional longitudinal data are needed for most aspects of these children’s verbal and nonverbal communication and socialization.
Question 3: What is known about the specific contributions of biological and environmental factors to these behaviors?
Very little is known about how biological and environmental factors contribute to these deficits although emerging interventions in this area show promise of demonstrating environmental impact on outcome.
Question 4: By examining other neurodevelopmental disorders that have autistic-like behaviors (e.g., temporal lobe lesions in early childhood; certain seizure disorders that involve behaviors reminiscent of autism which disappear with treatment), what can be learned about the nature of autism and its core deficits?
Most studies of children with autism compare their behaviors to those of heterogeneous groups of children with mental retardation or children with language disorders. These children do not share the social deficits of the children with autism. Some of the same methodologies have been used to compare children with seizure disorders and children with autism. In studies of samples with more serious seizure disorders, the children with seizures but not autism are equally impaired in all forms of nonverbal communication. Children with autism are the most impaired in joint attention and the least impaired in gestures used to regulate the behavior of others. The overlap of autism with seizure disorders, particularly seizure disorders that result in regression after normal development, is an important area of research. In general, onset of autism after apparently normal early development is poorly understood and underresearched. The literature on frontal and temporal lobe lesions in both animals and humans is informative regarding the timing and type of lesions that affect social development. Preliminary data from animal studies also suggest the possibility of recovers’ from early brain injury with treatment. This research has implications for understanding plasticity and the efficacy of early interventions but is not yet directly applicable to autism.
Question 5: Are there new models, methodologies, and/or statistical/analytic techniques that show promise in answering these questions?
These are proposed in the following section of Recommendations.
Recommendations of the Working Group on Communication/Social/Emotional Development
Four types of studies are recommended by the working group to address the gaps identified above.
- Longitudinal Studies Which Follow Children from Early Childhood to Middle Childhood and Then on to Adolescence. Studies that assess either identical communicative and social behaviors over time or different measurements of the same constructs are needed. It would be interesting to do these in tandem with measures of the child’s relationships with family members as well as measures of neurological, sensory, and motor functioning. Groups of children should be followed who meet diagnostic criteria for autism as well as those who fit into the spectrum even if they do not meet all the diagnostic criteria. Outcome measures should be broadened to include social understanding, competence, and relationships assessed in a variety of ecologically appropriate situations such as home and school. Studies could be designed to address the following questions: (a) How persistent are early deficits? (b) What are the consequences of these deficits? (c) What are the mediators of variation in development? (d) What are the best predictors of which children will develop speech and of which children will lose speech and develop autism after apparently normal early language development (up to one third of children with autism)? (e) Is there secondary deprivation (i.e., because children are not biologically prepared to respond to and interact with their environment, their initial deficits are worsened because they do respond normally to the usual, growth-promoting experiences in their environments.)? How do different families, schools, and treatment facilities act to prevent the deprivation that results from the child’s communicative and social deficits? Are there different outcomes in these cases? (f) Can communication/social subgroups be identified and how stable are these subgroups? (g) How do relations between specific deficits and neurological and cognitive functioning change with age? These studies could be linked to family studies so that the severity and persistence of deficits could be assessed in light of the characteristics of the families.
- Studies of Early Diagnosis. Measures of early social and communicative functions (like imitation, joint attention, and social orientation) could be administered either to children with suspected developmental difficulties by parents, pediatricians, or day-care workers or to the infant siblings of children with autism. These children could then be followed to age 3-4 to validate the diagnoses.
- Training Studies. Focused experimental interventions aimed at targeting abilities identified as specifically deficient in children with autism or predictive of later language and social skills could be carried out. These focused training studies would be short-term, intensive efforts to alter the child’s communicative and social skills in a particular domain. They would supplement existing intervention or educational programs in which both experimental and comparison subjects are enrolled. Baseline measures would be made of neurological, sensory, motor, and cognitive functions. Training studies should be instituted during three age periods: Early childhood—Focus of intervention would be communicative skills, imitation skills, and/or affiliative behaviors. A multichannel approach (more than one type of sensory input, e.g., visual and auditory) could be used. Middle childhood (nonverbal children)—Preliminary research is needed to specify target behaviors since so few studies have attempted to identify deficits in communicative and social abilities in this age period. Middle childhood to adolescence (verbal children)—Focus of intervention would be understanding of the knowledge, beliefs, and feeling of the self and others.
- Many individuals with autism lack speech and have limitations in gestural communication and in the use of augmentative communication systems. These problem areas may be caused or complicated by specific sensory difficulties and/or general motor or more specific motor/speech impairment. There is almost no systematic research in this area.
- Multidisciplinary/Multicenter Studies. In some cases, multidisciplinary or multicenter investigations would be most effective. For example, in longitudinal studies of nonverbal and verbal communication skills, such investigations might allow examination of both biological and psychological development. This would make the research far more meaningful since continuity and change could be examined not only in each domain but also in the relations across domains. Longer term, multidisciplinary/multicenter investigations would also be necessary for linking family studies to longitudinal follow-ups of the autistic proband. Multicenter investigations would also be necessary when large samples are needed or to permit studies of specialized populations, for example, an early diagnosis study using a high-risk sample, such as the infant siblings of children with autism, because of the small samples at any site.
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