…can live fulfilling lives. Or, so say researchers in Utah, according to a recent news story. (study abstract here)
I thought it worth blogging again, though. Not because of the good-outcomes nature (although that is a good thing to hear). But, as one of the researchers put it:
Adults with autism haven’t received the attention from researchers that children have…
It is beyond good to see research on adults with autism. It is vital. Even if you are in the “most people with autism are children” camp, learning from today’s adults just plain makes sense.
The adults studied were part of a joint UCLA/University of Utah study in the 1980’s. In this followup, the researchers interviewed people who had IQ’s > 70 in the 1989 study. As Kev noted in his blog post, these are not people with PDD-NOS or Asperger’s, they met DSM-III criteria for autism.
The authors found about half of the study subjects had “very good” or “good” or “fair” outcomes:
By these measures, the researchers found that 24 percent of the participants had a very good social outcome; 24 percent had a good outcome; 34 percent had a fair outcome; and 17 percent were rated in the poor social outcome category. No one’s social outcome fell into the very poor category.
Some of the details include:
About half of the 41 study participants were employed in full- or part-time competitive jobs. Six were living independently, including three who owned homes. Three were married with children, and one person also was newly engaged to be married. Eleven of the participants have driver licenses and the same number had a higher IQ than when assessed 20 years earlier.
IQ was not the main predictor of good outcomes. Instead, independent living skills were key.
The most important factor in whether study participants had a better living outcome was their degree of independence in daily activities—being able to take care of themselves, hold employment, live on their own or at least semi-independently, and take part in meaningful social relationships, according to Farley. Although IQ significantly influences social outcome, daily independence plays an even greater role in determining how well people with autism function, the researchers said.
To me, this seems to be somewhat circular reasoning: if the people are more independent, they have better outcomes. I need to read the actual study and see how they measure outcomes.
It is worth noting that “can live fulfilling lives” is not the same as “will live fulfilling lives”. A large fraction of the adults had “poor” outcomes. Also, we would all like to see fewer people even with “fair” outcomes.
About half the participants could not live or work independently, and the majority lived with their parents, although many of them had a high level of independence in their daily activities. Social isolation is a serious problem as well—44 percent of the group has never dated. In addition, 60 percent of the study participants, even some of those who had achieved independent living and working, were prone to anxiety and mood disorders and worried about a social stigma attached to autism. The IQ of eight participants declined since they first were evaluated 20 years ago.
One question I would have about the study is whether there is any bias in the selection of the study subjects. Out of 241 subjects in the original 1989 study, only 41 were reported on in this recent study. How they were selected for the followup could make a big difference.
Also, I will add that some will characterize this as “Look, another post saying we don’t need to offer any treatment for people with autism”. All I can say is, those of you saying that either have major reading comprehension problems or you have an agenda.
The big question in my mind is to find out what differentiated those who had good outcomes. One suggestion made by recent news sources–the support system of the Latter Day Saints (Mormon) religion/culture which predominates in Utah. According to one story:
And the LDS Church community may play a role in their success, researchers suggest.
“We wouldn’t be surprised if a lot of what contributed to those folks’ better outcomes is the unique social structures in Utah,” said Megan Farley, research associate at the Utah Autism Research Program and lead author of the study, published online Wednesday in Autism Research journal.
“While kids are still made fun of here and they face stigma … there’s this really strong network of multi generational support that are able to foster these kids’ development,” she said.
My first reaction was to brush this off as self-congratulatory. But, they aren’t saying it is the religion. Instead, it is the social structure.
Perhaps the most intriguing statement in the above news story was given a very short comment:
All but six of the adults in the study were still considered autistic.
Wow. 6 out of 41 no longer have autism diagnoses? I really need to get this paper and see if they have PDD-NOS or AS diagnoses. But, consider a 15% “recovery” rate. Begs a lot of questions. As Kev noted in his blog post, it seems unlikely that any of these individuals received biomedical interventions. For that matter, few if any may have received ABA.