One of the problems with understanding the natural history of autism is the lack of well-designed outcome studies in the disorder. Outcome studies tend to be expensive and grant agencies commonly do not fund studies longer than a few years. However, given the increased interest and funding in autism, I suspect there will be more research in this area.
An example of how outcome studies help in understanding the natural history of autism is a study published ahead of print by the Journal of Developmental and Behavioral Pediatrics. Dr. Gregory Liptak and colleagues from SUNY Upstate present a four year follow up of 725 adolescents with autism. The average age at intake was 15.4 years with average age at follow up 19.2 years.
The study examined some key global items in function and social interaction. I summarize some of the factors related to three key areas of function (% with this variable):
Being employed (48%) or in postsecondary education: This two-option level of achievement was positively correlated with higher family socioeconomic status (above the poverty level), not needing prescription drugs to control symptoms, good general physical health and having a parent who was involved in the school. Negative correlations for this level of achievement was associated with conversational difficulty, a history of being teased and lower IQ.
Obtaining a driver's license (4.5%): Few adolescents or young adults in this sample had a drivers's license. Again this achievement was associated with higher socioeconomic status, caucasian race, a two-parent household and parental involvement in school activities. A negative correlation with obtaining a driver's license was higher number of required school services.
Getting together with friends at least once in last 12 months (44.6%): A positive correlation was noted with communication ability and good general health status. A weak negative association was noted with non-white race status and male gender.
The authors note that this group of young adults with autism showed persistent differences in academic achievement and social behavior compared to age-matched adults without autism. In the young adults with autism 83% were living with their parents and 75% never used instant messaging, a chat room or e-mail.
The authors noted that their study did not examine whether young adults with autism (or their families) wanted more social interaction. We often assume the more social participation the better, but this may not be the same for all.
Even prospective studies have some limitations on interpreting causal contributions to outcome. However, this study supports several components to planning services for children with autism. These include reducing effects of poverty, reducing teasing/bullying in the environment, encouraging parents to be active in the school setting, early social and speech therapy and management of physical and mental co-occurring conditions.
Photo of Female Cardinal Courtesy of Yates Photography
Liptak GS, Kennedy JA, & Dosa NP (2011). Social Participation in a Nationally Representative Sample of Older Youth and Young Adults With Autism. Journal of developmental and behavioral pediatrics : JDBP PMID: 21285894
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