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

The Hidden Potential of Autistic Kids

Rose Eveleth has an article in Scientific American that begins:

When I was in fifth grade, my brother Alex started correcting my homework. This would not have been weird, except that he was in kindergarten—and autistic.

She goes on to discuss how more attention is now being paid to what autistic individuals can do and not just what they can’t do. Discussing the failures of commonly used tests to provide accurate assessments of autistic children, she provides an example from her brother:

… the woman delivering the questions asked him, “You find out someone is getting married. What is an appropriate question to ask them?”

My brother’s answer: “What kind of cake are you having?”

The proctor shook her head. No, she said, that’s not a correct answer. Try again. He furrowed his brow in the way we have all learned to be wary of—it is the face that happens before he starts to shut down—and said, “I don’t have another question. That’s what I would ask.” And that was that. He would not provide her another question, and she would not move on without one. He failed that question and never finished the test.

A test does not have to be like this. Other measures, like Raven’s Progressive Matrices or the Test of Nonverbal Intelligence (TONI), avoid these behavioral and language difficulties. They ask children to complete designs and patterns, with mostly nonverbal instructions. And yet they often are not used.

Read more of this fascinating article on Scientific American.

Children on the autism spectrum and meltdowns in public places

Sara Ryan conducted a qualitative study where she interviewed parents of autistic youth about their experiences taking their children out in public. The study, “‘Meltdowns’, surveillance and managing emotions; going out with children with autism,” was published in Health Place in the September 2010 issue [16(5): 868–875].

Here’s the abstract of the report:

The qualitative study from which the data reported here are taken, explored the experiences, support and information needs of parents of children diagnosed with autism spectrum disorders. 46 parents were interviewed either individually or in couples. Thematic analysis of the data revealed the complexity involved for the parents in taking their children out in public places. The emotion work parents conduct in public places both to make their children more acceptable within the space and to reduce the discomfort that others experience, helps to preserve the orderliness of public places. However, the special competence that parents developed over time also masks their turbulent feelings in public encounters.

The article is copyrighted, but with their permission, I’ve uploaded it to this site so that you can read the full article (pdf format).

Carousel image:  Sophy Kozlova, Dreamstime

Brain Scans Detect Autism’s Signature

An autism study by Yale School of Medicine researchers using functional magnetic resonance imaging (fMRI) has identified a pattern of brain activity that may characterize the genetic vulnerability to developing autism spectrum disorder (ASD). Published November 15 in the early edition of Proceedings of the National Academy of Sciences, the study could eventually lead to earlier and more accurate autism diagnosis.

[...]

The team identified three distinct “neural signatures”: trait markers — brain regions with reduced activity in children with ASD and their unaffected siblings; state markers — brain areas with reduced activity found only in children with autism; and compensatory activity — enhanced activity seen only in unaffected siblings. The enhanced brain activity may reflect a developmental process by which these children overcome a genetic predisposition to develop ASD.

Read more on Science Daily.

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