Autism Assessments Are Male-Centered: Why?

Gender inequality comes in many forms. While there have been large strides in the right direction over the past couple centuries, there is much work to be done as a society. The medical field has their own gender inequality issues with patients. Historically, all health assessments and measurements of what is normal have been based on male anatomy and physiology. In recent years, female anatomy and physiology has certainly been studied, but many normal female conditions are still seen by the general public as abnormal, or at least have a stigma attached. Autism diagnoses are no different.

Treating people as individuals and recognizing the differences in experiences among various people with the same condition is an important part of providing patient centered care. Women and men are different, and therefore their experiences, perceptions, and reactions to situations are different. Throughout life, men and women face different challenges as a result of their gender. This holds true for men and women with autism as well. Unfortunately, the way in which some organizations currently define the diagnostic criteria for autism does not address the specific challenges that women experience.

The male to female ratio

Autism has been discussed for a long time as being primarily a male phenomenon. More boys are diagnosed with autism, and the thought is that boys are genetically predisposed towards autistic behaviors compared to girls. The ratio is often said to be 4 boys for every 1 girl with autism. A recent study has shown that this ratio is actually closer to 3 to 1. And this is just in diagnosed cases. The National Autistic Society addresses discrepancies with this ratio a bit. They report the ratio as being about 5 to 1 with some studies showing a 3 to 1 ratio, but they make it clear that autism is underdiagnosed in girls. The prevalence of autism in males and females is likely closer to equal than previously thought.

One article discusses how females face a unique set of challenges during the diagnostic process. Females are less likely to be believed by friends, family, and coworkers even after they are diagnosed. This type of discrimination and lack of understanding can be isolating and make coping with autism more difficult for females.

Lorna Wing, an English psychiatrist, has been a pioneer in the field of childhood development disorders. She has helped spread the understanding of autism throughout the world. She has been particularly helpful in bringing to light how autism and gender interact. Like other medical conditions, the way in which health care professionals diagnose and look at autism has been based on the way that males with autism present. This leaves thousands of girls and women in the dark.
Women cope with and adjust to the challenges of autism differently than men. Research has shown that girls have learned to mimic tasks to hide their autistic characteristics.

The DSM-V criteria for autism explains that for an autism diagnosis an individual must have difficulties with “social communication and social interaction” and meet all of their listed criteria for this category, either currently or in the past. Additionally, they must meet two of the four criteria for “restricted, repetitive patterns of behavior, interests, or activities” currently or in the past. The last requirement for diagnosis is that they must have had the symptoms early on in development and they must cause clinically significant impairment in social, occupational, or other important areas of current functioning. The final piece of the diagnosis is that the previously mentioned symptoms cannot be better explained by another diagnosis.

The problem with these diagnostic criteria is that frequently, the special interests that girls on the spectrum have are similar to those of girls who do not have autism. This makes autism in girls a little less obvious to providers and the general public. Additionally, girls of all developmental abilities are often more social than their male counterparts.

Training providers

A recent article makes a good point that with heightened social abilities, girls may simply be better than boys at masking their autistic characteristics. This could be in a way one of the repetitive interests that is a part of the diagnostic criteria. The lack of diagnosis for girls does not mean that medical professionals are sexist and ignoring girls. This just means providers need better training so that girls do not continue to slip through the cracks. This starts with making the diagnostic criteria clear about differences that girls with autism will exhibit.

Patient-centered care that accounts for individual differences is key. Providers need to understand that there is more to a diagnosis than just seeing if a person meets the criteria on paper. Being a provider means that you are also an investigator. People should be thoroughly investigated and treated like the individuals that they are to ensure that they are being diagnosed accurately. Part of this thorough investigation involves taking a detailed history and observing females in various situations.

What are also needed are better diagnostic tools and better training for mental health professionals. Health professionals must be trained in what is being called the camouflaging effect, where females adapt and are able to hide their autistic characteristics in order to blend in.

Trascare is a “specialist, outcome focused provider of support to people with autism, mental health needs, learning disabilities and acquired brain injuries.” This UK-based organization hold conferences on autism that are often raise awareness on female autism and the latest diagnostic research. Trascare also shares personal experiences that people have with autism. One such experience is that of Pamela Hirsch who was diagnosed with autism in her forties. Being diagnosed this late means that she had spent her whole life without resources that could have helped her cope and lead a fuller life.

A social media trend to raise awareness picked up in 2016. The twitter hashtag #SheCantBeAutistic raised awareness by showing people on social media that thousands of women had been misdiagnosed or just ignored due to the prevalent stereotypes that women face. Now, in 2017, people are still using the hashtag and waiting for changes to diagnostic criteria. Changing the way that providers look at and identify women with autism will hopefully prevent future cases like Hirsch’s from occurring. Since autism is present at an early age, it is important that it be diagnosed early on so that all children and future adults are afforded the same opportunities in life regardless of their gender.

By identifying more women with autism correctly and diagnosing them sooner, these people will have access to the same resources as their male counterparts. They will not have to go through the stresses of hiding their condition because they will be better supported by the people around them. Most providers enter their field because they want to help other people live full and healthy lives. Providing them with more accurate tools for diagnosing can help them do their job more thoroughly. When women start being diagnosed accurately and stop slipping through the cracks, this will have a positive effect on society as whole. When more awareness is spread about the different challenges that women with autism face, communities will be able to be more accepting of these differences and be stronger as a result.