Welcome back to Reading the Research, where I trawl the Internet to find noteworthy research on autism and related subjects, then discuss it in brief with bits from my own life, research, and observations.
Today's article focuses on quantifying the quality of life for autistic people. Essentially, the researchers wanted to know peoples' demographics (age, race, household income, etc), exact diagnoses, medications, activities and employment statuses, type of insurance if any, and various other kinds of info.
You can look at the data yourself by going here and opening the two Word documents listed under "Supporting Information." Some of the results were sobering, like the fact that 71.8% of the surveyed autistic adults' households make less than $30,000 a year, and 65.9% of them had comorbid psychiatric diagnoses (depression, anxiety disorders, and other mental health issues except for seizure disorders).
I was pleased to see the researchers did apparently make a point to talk to autistic adults as well as parents of autistic children, both in designing their survey and when acquiring their data. That's sadly abnormal in the history of autism research, but these folks, at least, took a step in the right direction.
It seems the researchers did a decent job putting together the survey and data, but it somewhat surprises me, when reading the questions (also found at the second link above), that they seem so... basic. Many of the questions are basic demographics. There's some interest in IQ, sleep, religiosity, relationships status, and living situation, but in general the questions are quite simple. They're multiple choice, Likert scale, or closed-ended questions, for the most part.
I guess I'd kind of hoped autism research would have gotten further along than this, by now. I've been alive for three decades, and the concept of Asperger's Syndrome/HFA/those of us who blend into the neurotypical population better has been known in the United States for more than two and a half decades. That's a lot of time and money wasted looking for a nonexistent cure and a lot of time pointedly ignoring the needs of families and autistic individuals.
Better late than never, I guess? Hopefully this measure can be used widely to help autistic people and families develop healthier, happier, more meaningful lives. Perhaps better, more in-depth measures can be developed as well.
(Pst! If you like seeing the latest autism-relevant research, visit my Twitter, which has links and brief comments on studies that were interesting, but didn't get a whole Reading the Research article about them.)
Today's article focuses on quantifying the quality of life for autistic people. Essentially, the researchers wanted to know peoples' demographics (age, race, household income, etc), exact diagnoses, medications, activities and employment statuses, type of insurance if any, and various other kinds of info.
You can look at the data yourself by going here and opening the two Word documents listed under "Supporting Information." Some of the results were sobering, like the fact that 71.8% of the surveyed autistic adults' households make less than $30,000 a year, and 65.9% of them had comorbid psychiatric diagnoses (depression, anxiety disorders, and other mental health issues except for seizure disorders).
I was pleased to see the researchers did apparently make a point to talk to autistic adults as well as parents of autistic children, both in designing their survey and when acquiring their data. That's sadly abnormal in the history of autism research, but these folks, at least, took a step in the right direction.
It seems the researchers did a decent job putting together the survey and data, but it somewhat surprises me, when reading the questions (also found at the second link above), that they seem so... basic. Many of the questions are basic demographics. There's some interest in IQ, sleep, religiosity, relationships status, and living situation, but in general the questions are quite simple. They're multiple choice, Likert scale, or closed-ended questions, for the most part.
I guess I'd kind of hoped autism research would have gotten further along than this, by now. I've been alive for three decades, and the concept of Asperger's Syndrome/HFA/those of us who blend into the neurotypical population better has been known in the United States for more than two and a half decades. That's a lot of time and money wasted looking for a nonexistent cure and a lot of time pointedly ignoring the needs of families and autistic individuals.
Better late than never, I guess? Hopefully this measure can be used widely to help autistic people and families develop healthier, happier, more meaningful lives. Perhaps better, more in-depth measures can be developed as well.
(Pst! If you like seeing the latest autism-relevant research, visit my Twitter, which has links and brief comments on studies that were interesting, but didn't get a whole Reading the Research article about them.)
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