Study: Adults with Autism…

19 Mar

…can live fulfilling lives. Or, so say researchers in Utah, according to a recent news story. (study abstract here)

The news story is basically an echo of one that came out last Fall. Kev blogged it then.

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.

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15 Responses to “Study: Adults with Autism…”

  1. Joseph March 19, 2009 at 15:14 #

    Do you know if they said whether the autistics with poor outcome had been institutionalized and when, if so?

    Social isolation is a serious problem as well—44 percent of the group has never dated.

    That percentage was actually lower than I expected. Maybe I’ve been reading Jon Mitchell too much.

  2. Robert Estrada March 19, 2009 at 17:06 #

    Once again I am reminded that when I was a child that children with trisomy 21/Downs syndrome were referred to as mongolian idiots and considered as uneducable. They were squirreled away in “institutions” and only rarely talked about. It was a sort of muffled violence. I remember the heretical parents, doctors, and therapists who refused to buy into that solution. I am happy that we have made progress in accepting and integrating our society more than in the past. It is a small step.
    I am most likely neuro-typical, whatever that is, and I love being alive. I prefer that it be in a world where the only forms of violence are those of unavoidable raw nature and that we work to remove it form our own actions.
    Robert Estrada

  3. Patrick March 20, 2009 at 22:45 #

    … comment:
    All but six of the adults in the study were still considered autistic.

    Wow. 6 out of 41 no longer have autism diagnoses?

    Read a bit slower? I read this as 35 out of 41 are no longer considered autistic.

    I wonder where I could get some of that Utah type social support system in Spokane, Wa. Considering I would class myself with the poor social outcomes as things currently stand.)

  4. Patrick March 20, 2009 at 22:47 #

    (HAHA) I re-read that and now I see what you mean, 35 are still considered autistic.

  5. Tina Hillson April 1, 2009 at 20:29 #

    All these studies are great, but they seem to leave out a large and suffering population: Autistic adults who did not get diagnosed until they were over the age of 30. My sister, who has Asperger Syndrome, is one of these people. These autistic adults are suffering from everything the younger folks suffer from and more. Many autistic adults are underemployed, unemployed and homeless. It is time to shine a light on this population. Most of them are extremely bright and could live independently if only the authorities, counselors and employers could get educated about ASDs. Employers especially need to be educated, so that they will give people like my sister – who has two college degrees – a chance to earn a living. My sister Elizabeth Avery is an accomplished public speaker on the subject of autism. (Understanding Our Differences.) Adults with ASDs CAN be productive independent members of society if given the chance.
    Thank you. Sincerely, Tina Hillson

  6. Sullivan April 1, 2009 at 21:16 #

    Tina–

    I can’t add or comment other than to say, thanks for reading and responding.

  7. Billy Cresp April 2, 2009 at 00:15 #

    Tina, why do you have to validate what you say by saying that most autistic adults are extremely bright and could live independently? Why don’t you prove that most of them are that way? If most of them are, why are so many of then unemployed and homeless?

  8. Tina Hillson April 2, 2009 at 13:56 #

    I am referring to high-functioning autistics such as my sister, who has Asperger’s Syndrome. The reason for the underemployment / unemployment / homelessness is that nobody is giving these people a chance. My sister has an IQ of 140 and two college degrees, but she needs to be allowed to do things a little more SLOWLY because she thinks slowly. Like Albert Einstein, who is also widely thought to have been an Aspie. Employers need to understand this.

  9. Billy Cresp April 2, 2009 at 16:44 #

    Why didn’t you point out that you were referring to high-functioning ones? I don’t understand why nobody would let them have a chance. How can someone with a high IQ think slowly?

  10. tina hillson April 2, 2009 at 16:46 #

    Very easily, if they are on the autism spectrum. Clearly, you’re fortunate enough to be neurotypical, so you wouldn’t know about that firsthand…

  11. Joseph April 2, 2009 at 22:11 #

    @Billy: It is well known that autistics simply don’t have the employment status that non-autistics of the same intelligence would tend to have. There might be some exceptions.

    I’m surprised you seem to think it’s sufficient for someone to be extremely bright to be given a job. It doesn’t work that way. A lot of jobs explicitly require “good communication skills,” just to take one example.

  12. Billy Cresp April 2, 2009 at 23:04 #

    Joseph, if someone is extremely bright, how couldn’t they have communication skills alongside that?

  13. Dedj April 2, 2009 at 23:12 #

    Because there are several modalities of ‘brightness’ and intelligence Billy, with different parts of the brain responsible for different executive and intellectual function.

    Excellent function in one area does not always carry over to another, dependant on acquired or traumatic injuries (and location), pscyhogenic effects and development of performance and schema through habitutation, as well as other things.

    Very, very elementary neurology and psychology basically.

    You know Billy, all the questions you ask here could be answered by your local autism services, if you were to ever ask them.

  14. Joseph April 3, 2009 at 01:39 #

    As has been pointed out to Billy several times, his conception of the general intelligence construct is simplistic and mistaken. Think Stephen Hawking; extremely bright, can’t talk, can’t feed himself, can’t move at all.

  15. David N. Andrews M. Ed. (Distinction) April 3, 2009 at 15:03 #

    i could explain a lot about intelligence to billy the crispy-head.

    he wouldn’t understand it though.

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