Autism: Women and the Struggle for Diagnosis

Autism Spectrum Disorder (ASD) is a complex developmental disability; signs typically appear during early childhood and affect a person’s ability to communicate and interact with others. ASD is defined by a certain set of behaviors and is a “spectrum condition” that affects individuals differently and to varying degrees. 1 out of every 68 children has been identified as being on the spectrum.

Autism is generally thought of as a “boy disorder.” This is because statistically, 1 out of every 42 boys has been diagnosed, versus1 out of every 189 girls. Why is this?

Some people like to throw a “we hide it better” answer on this question. The truth is, you cannot hide what you do not know. This answer, then, does not cut it. The truth is, autism in girls is harder to diagnose for several reasons, including the fact that most of the criteria they use, when looking at girls, was developed specifically based on boys. Unfortunately, as girls were/are looked at, examinations often result in predominant and not completely accurate diagnoses of OCD (obsessive-compulsive disorder), ADHD, ED or anorexia.

Girls, for reasons not yet understood, tend to be more socially able and happy as infants. These girls go through most of life’s stages without ever getting an accurate diagnosis. As autism is becoming better and better understood, we will see more girls finally get their diagnosis.

Decades ago, if you acted differently, had meltdowns, panic attacks, could not vocalize your thoughts or speak in general, people were put into mental institutions. They were deemed not worthy of society. Women were no exception. This begs a look at social norms over the past couple of centuries.

What was considered education for women? Music, dance, art, stitching. Girls were taught to be homemakers and teachers. Some were lucky enough to become teachers. For the most part, education was not a primary concern for girls. It makes sense that a High Functioning girl would be overlooked. Eventually, society pulled opiates and other medications into fashion, and thus social anxieties and communication skills began to be relaxed. Autism, in women, would just not be seen. At the worst, women who were not able to be the sociable delight of the party would end up being a spinster. (As I write this, I am wondering about my favorite author, Jane Austen. I cannot help but wonder if she was HFA).

Autism itself was not a “thing” until the beginning of the last century, in 1908. They looked at it as a form of Schizophrenia. Then, the first actual patient was dubbed Autistic in 1943. Again, only boys were truly paneled and screened. Why? Most likely because, as in generations before, their position in society as they grew up was considered a more detrimental one. They were, in the majority of the ones that hold office, the police officers, doctors, etc. It was more important to discover why there were problems.

As it stands now, those studying Autism are still trying to define the root cause, so they can more clearly diagnose ASD in all sexes. Unfortunately because of society, even now in 2017 as I write this article, even High Functioning boys are misdiagnosed. The myths that have been thrown into public opinion have even extended their reach into general medicine. What I mean here is that pediatricians, who are not deeply educated on every aspect of the Spectrum, will deny the possibility that a child is autistic. (This is the case with Educators as well, perhaps even more so). Therefore, misdiagnosis is frequent. Of course, this means that girls are being nearly completely overlooked if they do not hit those myth markers. It may not be to the extent of the last century, but it is happening.

It is my hope that, as we continue to move forward, and more adult women embrace their quirks and look into getting diagnosed, that we can better educate society. The more the world is educated that not all autistics fit their Mythological Mold, the more we might be able to help little girls, so they can receive the help and tools they deserve and need to lead a full, healthy life.

God bless you.

For a look at how I discovered my own Aspieness, click here.