Understanding the Research: Undiagnosed Autism Spectrum Disorder in Women



This years International Meeting for Autism Research, organised by INSAR, took place in Baltimore earlier this month. I was fortunate enough to have my most recent work presented there and as part of my ‘Understanding the Research Series’ will attempt to explain some of our pretty exciting findings.

What we did:

The aim of our work was to look at how common undiagnosis of autism was in females in higher education (more data from more general settings to be presented at a later date). We surveyed 3361 students from universities across the UK. The heads of every department in every UK university were contacted and asked to send out the survey, which did not inform participants of the exact purpose until the debrief at the end of the survey. We used the Autism Quotient (AQ) to screen participants, as well as the Empathy Quotient, and asked participants if they had any another other psychiatric or learning disability diagnoses. From this data three groups were formed to be examined. Scores on the AQ of 32 and over meet the criteria for potential autism diagnosis. The first of our groups were students who scored above this criteria and already had a diagnosis of autism, the second group were those who scored above the criteria but who didn’t have a prior autism diagnosis, and the third group were students who scored below the criteria without a diagnosis.

What we found:

Lots of females who scored above the criteria but who didn’t have a diagnosis! More specifically about 8.7% of the females we tested, compared to 6.5% of the males. If we look at the empathy scores then we have a possibility as to why so many females have been missed. For both groups without a diagnosis females had significant higher empathy scores. However, for the group with a diagnosis empathy scores between males and females were pretty similar, they were both equally as impaired compared to the other two groups. What this tells us is that females who score above the criteria for diagnosis but who haven’t been identified appear to keep their empathy advantage. Could this possibly be why so many females are missed? Could females higher empathy abilities result in their hiding of impairments and ability to camouflage in society?  Our last finding presented was the number of other mental health diagnoses. Again a similar pattern was found. Females had significantly more mental health conditions in both undiagnosed groups, but not in the diagnosed group. This could be because females are more likely to be misdiagnosed or that the stress of having an undiagnosed condition and hiding impairments is greater in this population.

 

What can we conclude:

  1. There are potentially a high number of potentially undiagnosed females
  2. Empathy advantages are present in females scoring above the criteria on autism screening but who do not have a diagnosis
  3. Undiagnosed females appear to be more susceptible to other mental health compared to males.

 

What’s next:

Hopefully this research is the start of lots more examining why females often get misdiagnosis or not identified for diagnosis at all.

 

Belcher, H.L., Stagg, S.D., and Ford, R. (2016) The hidden disorder: Undiagnosed autism spectrum disorder in women. Presented at International Society for Autism Research International Meeting, May 2016, Baltimore, USA

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