The Problem of Late Diagnosis for Girls with Autism

More and more research continues to show that females with autism are getting the short end of the stick. Autism has frequently been thought of as a disorder that affects mostly boys. As it turns out this way of thinking is leaving many girls underdiagnosed and stuck in the shadows. Every year more boys are diagnosed with autism, and according to the Centers for Disease Control (CDC), boys are 4.5 times more likely to be diagnosed with autism than girls. However, more recently evidence is starting to show that this gap may not be as large as we have been thinking.

There is no denying that males and females are different. Throughout history, medicine and physiology has always been studied from the context of the male mind and body. As a result of this, many normal physiological functions of the female body have been stigmatized and seen as abnormal, in addition to not being well understood in the medical community.

With autism, we are seeing a similar phenomenon. Evidence is now indicating that girls might not show the same symptoms as boys with autism.

Less obvious symptoms

Dr. Louis Kraus a psychiatrist at Rush University Medical Center in Chicago, who specializes in autism has explained that one of the reasons for the under-diagnosis of girls with autism is that the symptoms that girls present with are not as obvious as the symptoms that boys present with. He explains that girls with or without autism tend to prefer socializing and being a part of group, whereas boys tend to move more towards isolation.

Since one of the hallmarks of autism is difficulty in social situations, these girls often get overlooked because of their social interactions. This results in either a complete lack of diagnosis, or diagnosis at a much later age. As a result, girls are not receiving the same interventions early on as boys are, which thus limits their opportunities in the world.

Haley Wittenberg’s story

This is what happened with one young woman from Los Angeles. Haley Wittenberg is the youngest of four and at the age of 19 (one year ago), she was diagnosed with autism. Whereas many might be upset by this diagnosis, for Haley it was a relief. After years of feeling different from her peers, but not knowing why, she finally had an answer. "I would always play sports with the boys when I was little, because it was easier for me and they didn't talk as much," Haley says. Her mother Lonnie reports that she noticed signs early on as well but always just attributed them to quirks. As a baby Haley never wanted to be cuddled and also did not make eye contact. She detested noisy and crowded places. When most kids would leap for joy at the thought of Disneyland, for Haley this was a nightmare.

Haley’s situation is quite common for girls with high functioning autism. Girls tend to be better at blending in than boys. This is commonly referred to as “social camouflaging.” Amanda Gulsrud, clinical director of the Child and Adult Neurodevelopmental Clinic at University of California, Los Angeles explains how, in a study looking at boys and girls with autism on the playground, the behavior of the boys was much more noticeable than the girls. They tended to be more isolated and could be found wandering around the perimeter of the schoolyard by themselves. In comparison, the girls with autism stayed close to other groups of girls. Even though they might not truly be interacting with them, they gave the appearance that they were. Gulsrud says that, “They were not having deep, meaningful conversations or exchanges.” They were moving in and out of the social circle without really engaging.

Clear gender differences in symptoms

Boys with autism are typically thought of as being louder and more disruptive than boys without autism. Girls with autism tend to be quieter and have more socially “acceptable” behavior. Marisela Huerta, a psychologist with the Weill Cornell Medical College, co-authored a survey of clinicians who specialize in autism. This publication revealed that 70 percent of the clinicians identified clear gender differences in autism symptoms. One such difference was that boys tend to engage in more repetitive behaviors, fixated interests, and are less likely to be involved in social situations. Girls on the other hand are more socially and verbally active, even at a young age. It is likely because of these differences that teachers do not pick up on female symptoms early on.

Kraus also identified gender differences in the characteristic compulsive behavior in autism. The amount of fixating that boys may do, such as carrying around items and talking about them endlessly, limits their ability to be social. This kind of behavior is not easily accepted into the social circles of children. Girl’s fixations are viewed differently. If they collect shells or obsess over a new toy, this may be much more socially acceptable than the fixations that boys have.

A new study to help further understand the differences

Since these differences have started coming out of the darkness, researchers are trying to understand more about the differences between autism in boys and girls. Child psychologist Kevin Pelphrey, director of the Autism and Neurodevelopmental Disorders Institute at George Washington University, is working on a study that is looking at genes, brain function, and behavior through childhood and adolescence in girls with autism. This is an issue that is dear to his heart as he is also the father of two children with autism.

Initial findings of the study are showing that there are differences in the brains of boys and girls with autism. Girls appear to have less disruption in the part of the brain that deals with processing social information. This means that girls may be more likely to understand social situations even if they have a hard time interacting in them. Pelphrey says that late diagnosis for girls can be a huge disadvantage to their social development. "You can always make up academics. That's never a huge worry if you fall a little behind with academics. What is much, much harder to do is make up social development,” he says.

Final thoughts

If you are concerned about your daughter or son for that matter, do not be afraid to seek more than one professional opinion. There are so many resources available to people with autism. If girls can start to be more accurately diagnosed and diagnosed earlier, they can take advantage of these resources that will help them lead more fulfilling lives. Every year more academic and community programs geared towards adolescents with autism are being developed to help them catch up socially.

Haley is currently involved in one at UCLA where she is learning how to approach people who she wants to get to know. This program is also helping her learn how to start and continue a conversation. So far, she says that the experience has been positive for her and that it is helping her have a social life. If your child was diagnosed late with autism, research what community groups are available to help him or her catch up socially. It is never too late.