Positive autistic outcomes in Utah
I have commented in the past on inflated figures for the costs of autism across the lifespan. These figures are sometimes used to justify calls for mandatory financial coverage of treatments and therapies that are supposed to normalize behaviour. The alternative is an alleged economic meltdown as the putative autism epidemic places an intolerable burden on the economy.
Recent research suggests that adult outcomes do not necessarily match this doom-laden scenario. A study from the University of Utah has looked at what happened to young people from an earlier study now they are all adults. They followed up 41 of the original 241 autistic Utahns. All had a measured IQ in childhood that was greater than 70. According to the press release
For the follow-up study, the researchers assessed the participants’ overall social outcome by their ability to maintain paid employment, the existence of meaningful social relationships, and their degree of independence in daily life. From these criteria, an individual’s overall social outcome was assigned to one of five categories: very good, good, fair, poor, and very poor:
- Very good meant the person held paid employment without extra support to perform job duties, had important social relationships, and a high independence in daily life.
- Good indicated the individual had a generally high level of independence at work and in daily life, requiring some extra support, and also had a friendship or some acquaintances.
- Fair reflected the need for regular support at work or home, but the person did not have to live at a special residential facility. The participants in this category had acquaintances through special activities but no particular friends.
- Poor showed the need for a high level of support, such as a residential living facility and planned daily activities for people developmental disabilities. Those in this category had no friends outside their residential living arrangements.
- Very poor meant the individual required a high level of care in a hospital setting with no autonomy and had no friendships.
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.
The original study, published in 1989, used DSM III diagnostic criteria. DSM III used very narrow criteria based on Kanner’s descriptions of autism and excluded many of those who would qualify for a diagnosis of autistic disorder using modern DSM IV criteria along with all those who currently meet DSM IV criteria for PDD-NOS and Aspergers disorder. So, even though the follow up looked at outcomes amongst the most able subjects of the original study (those with IQ >70), it is reasonable to surmise that all would be regarded by today’s standards as severely autistic.
Yet nearly half of them enjoy good or very good outcomes, requiring very little support. If the researchers had followed up the entire cohort, including the two thirds with an IQ < 70, no doubt there would be many more with a poor or very poor social outcome. However most people identified with autism today are at least as able as the subjects of the present study. So how did they achieve such positive outcomes in Utah?
My thanks to Dora Raymaker at autism.change.org for linking to a possible explanation. I had forgotten that Utah is home to the Church of Latter Day Saints (LDS). LDS culture is supposed to be inclusive of people with disabilities and fosters close knit communities with supports that bridge the generation gap. This is not to say that there is no downside to being autistic in Utah. According to the Salt Lake Tribune
Still, about half of the adults in the study are on Medicaid, live with their parents and need a lot of help from family or social service agencies with jobs, relationships and personal care. A sizeable number have had trouble with the law or have other medical disorders, from anxiety and depression to trouble sleeping.
And in another story the same reporter writes of a family where an adult son is still dependent on elderly parents.
At ages 68 and 62, Carl and Valerie Jensen have asked another son to care for their youngest when they die.
The Jensen family are the son’s main source of social contact, along with a group of friends he made in special education classes in high school. The social support he once had through his LDS ward is largely gone now that his peers have moved on and married.
Despite these caveats it does seem that if society can be organized in an autism friendly way then autistic people can live fulfilling lives without bringing the economy crashing down. We still need to make proper provision for vulnerable people. In doing so we should be guided by a desire to improve their quality of life rather than seeking answers through prevention and cure.
Comment by Joseph | March 25th, 2009
I have a copy of a recent outcome study that is *not* of HFA only: Eaves & Ho (2008). Half had verbal IQs above 50, half below.
They find that 52% had good or fair outcome and 46% poor outcome.
It’s interesting that none had “very poor” outcome. That would’ve been a common outcome, say, when Kanner was still around. It turns out that in British Columbia (where the study is from) institutional care is not available. Some did live in group homes, though.
Comment by RAJ | March 25th, 2009
Deborah Fein also reported that normal outcomes are becoming more prevelant (up to 25%). The best predictors are a PDD/NOS diagnosis and average or above average IQ scores and early behavioral interventions.
http://www.ncbi.nlm.nih.gov/pubmed/19009353?
PDD/NOS is also the one subcategory of ASD most closely associated with unfavorable events in the pre, peri and neonatal period.
http://pediatrics.aappublications.org/cgi/content/full/107/4/e63#T1
Stella Chess whose article on Rubella Autism was the first to show that ASD was an organic brain disorder rather than a psychogenic disorder also did a followup on the children in her study. A followup of the children also showed a high rate of recovery from autism symptoms.
http://www.springerlink.com/content/j25pqu8546115m47/
http://www.springerlink.com/content/x1xq336510810m61/
Mike;
your statement:
“We still need to make proper provision for vulnerable people. In doing so we should be guided by a desire to improve their quality of life rather than seeking answers through prevention and cure”.
No one disgrees with your statement of improving the quality of lives of autistic people, but your statement that this should be the only strategy rather than seeking answers through prevention and cure is insulting and demeaning to parents, family members, special educators, speech therapists, occupational therapists and other professionals whose hard work to remediate the autistic symptoms in ever increasing numbers, therapies that can lead to recovery and yes, normal outcomes.
You should note that the only preventions in place has been the development of an effective rubella vaccine and withdrawing Thalidomide from the marketplace for treatment of morning sickness in pregnancy. Untreated phenylketonuria has also been associated with disruption of early brain development leading to a high incidence of mental retardation and high rates of ASD. All newborns in Western societies are routinely checked for PKU and when test results are positive, the newborns are immediately placed on a phenylalinine-free diet that has resulted in prevention of mental retardation and autism.
What’s wrong with research that results in prevention? Or interventions demonstrated to effectively remediate autism symptomolgy. Nothing, just as there is nothing wrong with parent advocacy groups lobbying the US government for insurance coverage for autism treatment or for federal funding to make the lives of autistic people as you say living productive lives in an autism friendly way.
My daughter was diagnosed with PDD/NOS, lost her diagnosis and has had normal outcome, she has no sympathy for the ND crowd who would claim autism is genetic, cannot be cured and any claims for normal outcomes is just ‘recovered’ autistic people trying to pass as normal just as in the 1950’s in the US the racist view was that the only key to successful African Americans was to try to pass as white people.
Comment by Joseph | March 25th, 2009
RAJ’s studies are not about adult outcomes. Those are about loss of diagnosis of children diagnosed at an early age, typically age 2. It’s well known that the earlier the diagnosis, the less stable. That’s completely different to adult outcomes of children who were obviously autistic at, say, age 8.
“My daughter was diagnosed with PDD/NOS, lost her diagnosis and has had normal outcome, she has no sympathy for the ND crowd who would claim autism is genetic, cannot be cured and any claims for normal outcomes is just ‘recovered’ autistic people trying to pass as normal just as in the 1950’s in the US the racist view was that the only key to successful African Americans was to try to pass as white people.”
The proper analogy is a black person who is successful, and subsequently claims they are no longer black because of this, e.g. Barack Obama claiming he’s not black because his outcome is unexpected for a black person.
Comment by Mike | March 25th, 2009
RAJ,
my statement We still need to make proper provision for vulnerable people. In doing so we should be guided by a desire to improve their quality of life rather than seeking answers through prevention and cure is neither insulting nor demeaning. Though it may benefit from a fuller explanation.
If our primary motivation is to improve quality of life for autistic people that does not necessarily rule out investigating means of prevention and cure. It does not necessarily rule them in either. My point is that most clinicians and researchers take it for granted that, of course, our primary concern should be to seek prevention and cure and that this will unquestionably lead to improvements in quality of life.
They make two a priori assumptions.
1. That all autistics would have been happier if they had been born non-autistic.
2. All autistics would be happier if we could cure their autism.
In challenging these assumptions I do not dispute that we should intervene in the lives of some people who need assistance, therapy or treatment of some kind. I do believe that the ethical basis for such intervention is often overlooked. There is an interesting, if ultimately unstatisfactory (IMO) discussion of these questions in The Ethics of Autism by Deborah Barnbaum which I hope to review here eventually.
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[...] Someone I’ve heard of placed an interesting blog post on blog-thing : Positive autistic outcomes in UtahHere’s a brief overviewAnd in another story the same reporter writes of a family where an adult son is still dependent on elderly parents. At ages 68 and 62, Carl and Valerie Jensen have asked another son to care for their youngest when they die. … [...]