Breaking the Link: PCOS and Autism

BREAKING THE LINK: PCOS AND AUTISM

A Swedish study released this month gained media attention for linking polycystic ovarian syndrome (PCOS) with autism spectrum disorder (ASD). The authors concluded that children of women with PCOS have a 59% higher risk of developing ASD compared to children of women without PCOS (0.7% vs. 0.4%) because of increased exposure to androgens (male hormones) before birth. This risk was further increased in obese women with PCOS. What does this mean for women who have PCOS? Let's go behind the numbers to provide reassurance. 

What does this mean if I have PCOS?

Probably nothing. Autism is complex and we know very little about the underlying causes. Autism is also relatively rare, affecting 1 in 68 children in the U.S.  The 59% increased risk of ASD cited in the study was calculated by comparing the percentage of children with ASD in the non-PCOS group (0.4%) to the PCOS group (0.7%). Note that ASD was a rare finding in both groups. Unfortunately, media outlets often bypass these details to generate attention-grabbing headlines that result in “clickthroughs”. This study is the first to find this connection, and should not raise concern. Rather, it should prompt more studies to look at this possible association. This study does NOT suggest that PCOS causes autism.

I have PCOS but I don’t have high male hormones. Does this study affect me?

The women in this study were not separated based on whether or not they had elevated male hormones. Instead, the authors looked at a large group of Swedish women who had PCOS, regardless of their hormone levels or other criteria used to make the diagnosis. This is one of the weaknesses of the study. Again, this study should not raise concern but rather provide a suggestion for further research.

I am obese with PCOS. Should I be concerned?

The study found that the risk of ASD was further increased in obese women with PCOS compared to normal weight women with PCOS. Again, this was still a rare outcome. However, obesity can contribute to other health complications both before and during pregnancy, so you should continue to follow the advice of your primary care doctor or obstetrician to lessen these risks.

Do I need to have my child checked for ASD?

If you are a woman with PCOS, you do not need to have your child evaluated for ASD because of this study. You should continue routine appointments with your child’s pediatrician, who will continue to monitor for normal developmental milestones. If you have specific concerns about a particular developmental delay, speak with your child’s pediatrician.

Do I need to worry about ASD with my next child?

No, this study should not change your expectations or concerns about future pregnancy. Autism is rare, and much more research will need to be done before we can say whether PCOS has any impact on ASD.

Autism is a rare and complex diagnosis with a poorly-understood cause. A single study showing an increased risk in women with PCOS means that more research should be done to give us more information. In the meantime, this study will not impact how we counsel or manage our patients with PCOS who are planning pregnancy. 

Author Information

Dr Jennifer Stockburger, MD is a Resident Physician at BJC/Washington University School of Medicine

Dr Kenan Omurtag, MD is an Assistant Professor of Reproductive Endocrinology and Infertility at The Fertility and Reproductive Medicine Center at BJC/WASHU in St Louis