Graduate College students Uncover Critical Error in Autism Screening Tips
It is common for the first step in diagnosing a person with autism to be a simple screening test done by the person’s regular doctor. Screening can help determine if a person has characteristics and behaviors that are common to people with autism. After that, the doctor will refer the person to a specialist for a better diagnostic assessment. But if the person passes the screening test, they will likely not be referred for further evaluation.
So you can imagine the importance of these early screening tools being accurate and easy to use so that people can make their correct diagnosis. But recently, two PhD students discovered a flaw in the NICE screening guidelines for the Autism Quotient 10 test (AQ-10), which can cause some people with autism to go undiagnosed.
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Two PhD students Lucy Waldren and Rachel Clutterbuck are attending the National Institute for Health and Care Excellence (NICE) in the UK as students of Punit Shah, Associate Professor of Psychology at the University of Bath in England. They discovered what, at first glance, appears to be a fairly small discrepancy between interpreting the rules of the Autism Quotient-10 (AQ-10) screening test.
The original paper stated that people who score a 6 or higher should receive another rating. The other paper (from NICE) said people who are above a 6 should receive another rating.
“We thought that was really weird,” says Lucy. “So we dug through the rationale for how they got their cutoff score and we couldn’t really find a reason why they picked 7 out of 6. So we believe that you made a mistake somewhere. “
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At first the students thought that they must be mistaken in their discovery. But the more they went through the details of each newspaper, the more they realized that something was wrong.
“At first we just checked it over and over and checked it twice and three times. We must have checked this a dozen times and thought, ‘Well, are we safe here?’ ”Says Shah. “When we were academically convinced that these mistakes could happen, and Lucy did a really good job of scrutinizing all the appendices and the essence of what the NICE guideline group looked at, we have the choice at this point hit. “to write something about it and send it to a scientific journal as soon as possible just to try and get people’s attention.”
Whether or not you give a score of 6 may seem insignificant … until you are one of the people who got a 6. If your doctor follows NICE’s guidelines, they may not refer you to a specialist even though you may actually have autism.
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“We don’t know how many people could be affected. If people miss another exam and diagnosis as a result, they will not have access to the same care and support, including financial support, ”says Lucy. “This will have an impact on their mental health due to the lack of support. They also don’t have the confirmation to get the diagnosis they think is correct. So it could have had a really serious impact on people’s lives over the years.
“From a research perspective, the key figure serves as a cutoff for the participants. So data could also have been lost because people used the different cutoffs. “
The students published their results in The Lancet Psychiatry. Fortunately, NICE wasn’t too proud to admit and correct their mistake. The school issued a statement promising to fix the problem.
“We were concerned that the guidelines would not be changed,” said Shah after the announcement. “We were therefore very pleased to see that NICE took the topic seriously and dealt with it in such a timely manner.”
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Shah says this is not the first time mistakes have been made in autism screening guidelines. “Other characteristics of autism spectrum traits have been used quite loudly or in a messy manner in the literature. We found a couple of publications where they used the wrong cutoff to include or exclude people from their studies, ”he says. “I think at some point these researchers will have to rethink their data, or consider trying to replicate its basic effect. Some people have been receptive to this idea and have checked to see if they implemented the wrong cutoff. But in general people weren’t so open about their mistakes. “
Lucy, Rachel and Dr. Shah will continue to look into the use of autism traits in research to find out what changes need to be made to improve their accuracy.
In the meantime, this can be helpful information for some people who believe they or their loved one has autism but have not been diagnosed. It is worth getting a second opinion or talking to your doctor about the possibility of a mistake in the screening process, because doctors and researchers make mistakes too.