Participation in Social Activities among Adolescents with an Autism Spectrum Disorder

There’s a new study out this month on socialization in teens with ASD by Paul T. Shattuck, Gael I. Orsmond, Mary Wagner, and Benjamin P. Cooper:

Background

Little is known about patterns of participation in social activities among adolescents with an autism spectrum disorder (ASD). The objectives were to report nationally representative (U.S.) estimates of participation in social activities among adolescents with an ASD, to compare these estimates to other groups of adolescents with disabilities, and examine correlates of limited social participation.

Methods and Findings

We analyzed data from wave 1 of the National Longitudinal Transition Study 2, a large cohort study of adolescents enrolled in special education. Three comparison groups included adolescents with learning disabilities, mental retardation, and speech/language impairments. Adolescents with an ASD were significantly more likely never to see friends out of school (43.3%), never to get called by friends (54.4%), and never to be invited to social activities (50.4%) when compared with adolescents from all the other groups. Correlates of limited social participation included low family income and having impairments in conversational ability, social communication, and functional cognitive skills.

Conclusions

Compared with prior research, our study significantly expands inquiry in this area by broadening the range of social participation indicators examined, increasing the external validity of findings, focusing on the under-studied developmental stage of adolescence, and taking an ecological approach that included many potential correlates of social participation. There were notable differences in social participation by income, a dimension of social context seldom examined in research on ASDs.

The complete research report is available as a free resource online, here (pdf).

Having done a first reading of it, it confirmed my guess that a lot of the significant social impairment they noted was limited to those with more severe communication deficits and lower IQs. Indeed, their overall findings are likely to somewhat overestimate the extent of socialization problems in teens with an ASD because their sample was drawn from those who are classified for special education under the Autism category. As many of us know, students who are high-functioning (e.g., students with Asperger’s Disorder) are often not categorized under the Autism category and are categorized under “Other Health Impairment” or some other category. That said, if your child has severe communication deficits and an IQ <85, these results are likely to be applicable. Not surprisingly, perhaps, families with greater financial resources have children who participate in more social activities.

When thinking about why teens with ASD engage in less socialization outside of school, one factor that I want to mention here is that there are likely fewer opportunities in communities for youth with ASD than for youth with other challenges. As part of advocacy efforts, parents can help their children by working with community agencies to create more opportunities for socialization. Stuck for ideas? Try contacting the child psychiatry department at a large hospital and ask them if they will work with you to create some programs. And try contacting the special education program at a nearby university and see if you can get their staff and students to work with you creating a camp or outings or other opportunities for socialization.

As parents, we tend to spend a vast amount of our energy on dealing with schools and doctors/therapists, but there is much to be done in the community. When my son was young, I routinely went to camps I had picked out for him and arranged to train all the staff so that they could understand him and so that he could attend a regular camp. It was a wonderful experience for him and the camps would subsequently be more available to other children with similar problems.

As one of the overheads Sherry Pruitt and I use in our workshops says: Everything in Life is Social. If your child’s life outside of school is not providing enough socialization opportunities, network with other parents and reach out to agencies and programs in your area to see what you can develop. If your child needs it, there are probably at least 10 other children around who need it, too.

Training Peers Improves Social Outcomes for Some Kids with ASD

Children with autism spectrum disorder (ASD) who attend regular education classes may be more likely to improve their social skills if their typically developing peers are taught how to interact with them than if only the children with ASD are taught such skills. According to a study funded by the National Institutes of Health, a shift away from more commonly used interventions that focus on training children with ASD directly may provide greater social benefits for children with ASD. The study was published online ahead of print on November 28, 2011, in the Journal of Child Psychology and Psychiatry.

“Real life doesn’t happen in a lab, but few research studies reflect that,” said Thomas R. Insel, director of the National Institute of Mental Health (NIMH), a part of NIH. “As this study shows, taking into account a person’s typical environment may improve treatment outcomes.”

The most common type of social skills intervention for children with ASD is direct training of a group of children with social challenges, who may have different disorders and may be from different classes or schools. The intervention is usually delivered at a clinic, but may also be school-based and offered in a one-on-one format. Other types of intervention focus on training peers how to interact with classmates who have difficulty with social skills. Both types of intervention have shown positive results in studies, but neither has been shown to be as effective in community settings.

Connie Kasari, Ph.D., of the University of California, Los Angeles, and colleagues compared different interventions among 60 children, ages 6-11, with ASD. All of the children were mainstreamed in regular education classrooms for at least 80 percent of the school day.

These children were randomly assigned to either receive one-on-one training with an intervention provider or to receive no one-on-one intervention. The children were also randomized to receive a peer-mediated intervention or no peer-mediated intervention. The two-step randomization resulted in four intervention categories, each with 15 children who had ASD:

• Child-focused: direct, one-on-one training between the child with ASD and intervention provider to practice specific social skills, such as how to enter a playground game or conversation
• Peer-mediated: group training with the intervention provider for three typically developing children from the same classroom as the student with ASD; the affected student did not receive any social skills training. The participating children were selected by study staff and teachers and were taught strategies for engaging students with social difficulties.
• Both child-focused and peer-mediated interventions
• Neither intervention.

All interventions were given for 20 minutes two times a week for six weeks. A follow-up was conducted 12 weeks after the end of the study. After the follow up phase, all children with ASD who had received neither intervention were re-randomized to one of the other treatment categories.

Children with ASD whose peers received training—including those who may also have received the child-focused intervention—spent less time alone on playgrounds and had more classmates naming them as a friend, compared to participants who received the child-focused interventions. Teachers also reported that students with ASD in the peer-mediated groups showed significantly better social skills following the intervention. However, among all intervention groups, children with ASD showed no changes in the number of peers they indicated as their friends.

At follow-up, children with ASD from the peer-mediated groups continued to show increased social connections despite some of the children having changed classrooms due to a new school year and having new, different peers.

According to the researchers, the findings suggest that peer-mediated interventions can provide better and more persistent outcomes than child-focused strategies, and that child-focused interventions may only be effective when paired with peer-mediated intervention.

In addition to the benefits of peer-mediated interventions, the researchers noted several areas for improvement. For example, peer engagement especially helped children with ASD to be less isolated on the playground, but it did not result in improvement across all areas of playground behavior, such as taking turns in games or engaging in conversations and other joint activities. Also, despite greater inclusion in social circles and more frequent engagement by their peers, children with ASD continued to cite few friendships. Further studies are needed to explore these factors as well as other possible mediators of treatment effects.

The study was supported by NIMH, the Eunice Kennedy Shriver National Institute of Child Health and Human Development, the National Institute of Neurological Disorders and Stroke, and the National Institute on Deafness and Other Communication Disorders through the Studies to Advance Autism Research and Treatment (STAART)network program and received additional funding from the Health Resources and Services Administration (HRSA).

Reference

Kasari C, Rotheram-Fuller E, Locke J, Gulsrud A. Making the Connection Randomized Controlled Trial of Social Skills at School for Children with Autism Spectrum Disorders. J Ch Psychol Psychiatry. 2011 Nov 28. [epub ahead of print]

Clinical Trials Number: NCT00095420

Source: National Institute of Mental Health

Can oxytocin help social skills in individuals with autism?

Two studies out this month and next suggest that oxytocin inhalation may be of benefit.   Here are the abstracts:

 Andari E, Duhamel JR, Zalla T, Herbrecht E, Leboyer M, Sirigu A: Promoting social behavior with oxytocin in high-functioning autism spectrum disorders. Proc Natl Acad Sci U S A. 2010 Mar 2;107(9):4389-94.

Social adaptation requires specific cognitive and emotional competences. Individuals with high-functioning autism or with Asperger syndrome cannot understand or engage in social situations despite preserved intellectual abilities. Recently, it has been suggested that oxytocin, a hormone known to promote mother-infant bonds, may be implicated in the social deficit of autism. We investigated the behavioral effects of oxytocin in 13 subjects with autism. In a simulated ball game where participants interacted with fictitious partners, we found that after oxytocin inhalation, patients exhibited stronger interactions with the most socially cooperative partner and reported enhanced feelings of trust and preference. Also, during free viewing of pictures of faces, oxytocin selectively increased patients’ gazing time on the socially informative region of the face, namely the eyes. Thus, under oxytocin, patients respond more strongly to others and exhibit more appropriate social behavior and affect, suggesting a therapeutic potential of oxytocin through its action on a core dimension of autism.

Guastella AJ, Einfeld SL, Gray KM, Rinehart NJ, Tonge BJ, Lambert TJ, Hickie IB: Intranasal oxytocin improves emotion recognition for youth with autism spectrum disorders. Biol Psychiatry. 2010 Apr 1;67(7):692-4.

BACKGROUND: A diagnostic hallmark of autism spectrum disorders is a qualitative impairment in social communication and interaction. Deficits in the ability to recognize the emotions of others are believed to contribute to this. There is currently no effective treatment for these problems. METHODS: In a double-blind, randomized, placebo-controlled, crossover design, we administered oxytocin nasal spray (18 or 24 IU) or a placebo to 16 male youth aged 12 to 19 who were diagnosed with Autistic or Asperger’s Disorder. Participants then completed the Reading the Mind in the Eyes Task, a widely used and reliable test of emotion recognition. RESULTS: In comparison with placebo, oxytocin administration improved performance on the Reading the Mind in the Eyes Task. This effect was also shown when analysis was restricted to the younger participants aged 12 to 15 who received the lower dose. CONCLUSIONS: This study provides the first evidence that oxytocin nasal spray improves emotion recognition in young people diagnosed with autism spectrum disorders. Findings suggest the potential of earlier intervention and further evaluation of oxytocin nasal spray as a treatment to improve social communication and interaction in young people with autism spectrum disorders. Copyright 2010 Society of Biological Psychiatry.

This is not the first time that oxytocin has been suggested as a possible treatment for autism-related social skills deficits. The first suggestion was in 1992, and there have been almost 100 articles and reports since then discussing the possibility. While the results are encouraging, I do not mention the studies here as a suggestion that parents run out and start this treatment for their children. But if you’d like to know more or perhaps participate in clinical trials, see the federal government’s site for studies that are recruiting participants.

Will DSM-5 Contain Or Worsen The “Epidemic” Of Autism?

Allen Frances, M.D. has been an outspoken critic of the DSM-5 process and draft proposal.   In Psychology Today, he blogs about the proposed changes to Autism Spectrum Disorder, a topic I have blogged about here and here.   Dr. Frances writes, in part:

There has been an "epidemic" of autism in the last fifteen years. This used to be a very rare condition diagnosed less than once in every two thousand kids. Now it is diagnosed once in a hundred. We will elsewhere take up the foolish theory that this was cause by vaccination. Here we will trace the real causes.

People change slowly, if at all. In contrast, fads in psychiatric diagnosis can come and go in a fast and furious fashion. The autism fad resulted from changes in DSM4 (published in 1994) interacting with a strong societal push.

There were two DSM4 contributions:1) the inclusion of a surprisingly popular new diagnosis, Asperger’s Disorder; and, 2) much less importantly, editorial revisions meant only to clarify the criteria for Autistic Disorder, but which may have inadvertently lowered the threshold for its diagnosis.

[...]

The DSM5 proposal is highly controversial both within the professional community and among the advocacy groups- with strong supporters and equally strong critics and probably about an equal weight of argument on both sides. When it comes to labelling, the heat of the argument is often a direct reflection that there are no clear right answers. The major point is to ensure that DSM5 not provoke a further misleading "epidemic" of autism. The criteria set should retain and enhance items that will reduce the risk of false positive diagnosis. Proposed changes and alternative wordings need careful field testing in nonspecialist settings to determine their likely future impact on rates. Even small wording changes can have a profound impact on who is, and who is not, diagnosed.

Ultimately, there will not ever be a clear right verdict on the DSM5 proposal to unify autistic disorders within one rubric. The scientific evidence is not overwhelming either way and is subject to different plausible interpretations. The stigma question cuts both ways. The services issues will have to be dealt with whether there is one diagnosis or two.

Read more of his commentary here.

Extraordinary Perception

There’s a fascinating piece in the March issue of Scientific American by Wray Herbert about some research that looked at whether people with Autism Spectrum Disorder (ASD) are really more distractible or if it is more likely that they just have a greater than normal perceptual capacity.

Herbert starts with an anecdote from Pulitzer Prize–winning music critic Tim Page’s childhood, relating an assignment Page wrote in the second grade after a field trip. His writing exhibits what many of us have seen time and time again — an extraordinary amount of detail about things that we might not think important, and little mention of what most children would have written about – and what the teacher thought he should have written about.

Herbert uses Page’s story and his memoir as a jumping off point to pose the question:

What’s going on in the autistic mind that makes the details of bus routes infinitely fascinating? Why are people like Page so easily distracted from the main act? Psychologists at University College London think that it might be a mistake to consider such distractibility as simply a deficit. To the contrary, Anna Remington and John Swettenham and their colleagues speculate that people with ASD might have a greater than normal capacity for perception, so that what appears as irrelevant distraction is really a cognitive bonus. They decided to test the idea in the lab.

Read more

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