POST2: Women and Autism; Past and Present

 Women and Autism: Past and Present

Being a woman on the autism spectrum can be incredibly difficult. Not only do they have to face all the challenges and difficulties that every person with autism experiences while interacting with a world that doesn't understand them or the way that they think, but they also have to deal with the fact that, historically speaking, autism has been perceived as a predominantly, if not exclusively, male phenomenon. The disorder was usually described in terms of how it presented in males, and girls tended to have to be more noticeably autistic than boys to even get diagnosed. As a result, understanding and acceptance of girls and women on the autism spectrum lags behind that of boys and men even today. 

A Brief History of Autism 

However, in order to truly understand the history of how women with autism have been treated, we must first look at the history of autism in general. The condition that we now recognize as autism was first described in the late 1800s and early 1900s by psychologists who believed that the condition was the earliest stage of schizophrenia. In fact, the Latin word autismus (itself derived from the Greek word autos, meaning self) was first used by Swiss psychiatrist Eugene Bleuler to describe what he believed were symptoms of childhood-onset schizophrenia. However, while Bleuler coined the name (which can be roughly translated to "the isolated self" or "the self alone"), the condition was first described in full by two doctors who worked independently of one another. One was an Austrian Jew, and the other was a Nazi.

Dr. Leo Kanner, the Austrian, immigrated to the United States in 1924, less than a decade before Hitler's rise to power, and in 1930, he developed the very first child psychiatry service. For this reason, he would go down in history as the founder of child and adolescent psychology. In his work with children, Kanner started to observe a number of children who displayed the same odd symptoms: apparent lack of interest in social interactions, limited speech, strange, repetitive movements, and and unusual, highly focused interests, and in 1943, he published "Autistic Disturbances of Affective Contact", one of the very first descriptions of autism as an individual phenomenon, rather than as an early form of schizophrenia. Unlike people with schizophrenia, these children had their condition-autism-from the moment they were born. Kanner continued his work on children with autism for the rest of his life, even serving as the editor of the Journal of Autism and Childhood Schizophrenia (now the Journal of Autism and Developmental Disorders) from 1971-1974, and fighting for the well-being of both children with autism and their families. However, for all the good he did, Kanner's research was still limited in a number of ways. First, Kanner refused to accept the idea that highly verbal children could be on the autism spectrum, leading millions of children, both boys and girls, undiagnosed. Second, although Kanner worked with girls who displayed symptoms of autism, most of his work was written under the assumption that almost all autism patients were boys. Due to Kanner's prominence, large numbers of autistic people, especially girls, were never diagnosed. 

The Nazi was Hans Asperger, who was also from Austria. In 1938,  and then again in 1944 (one year after Kanner published his paper), Asperger, who worked at the special education section of university children's clinic in Vienna, published his own articles, wherein he described what he called "autistic psychopathy", which bore a startling similarity to the condition described by Kanner...and which he himself seemed to have. Unsurprisingly, then, Asperger was fond of these children, whom he called "little professors", and noted that many children with autistic traits grew up to have successful careers as adults. Unfortunately, in spite of his obvious affection for these children, he, like most doctors at the time, was heavily involved with a political party that demanded the death of anyone who was perceived as being a burden on the state, which, naturally, included those who were seen as developmentally disabled. While Asperger appears to have tried to protect the children whose talents he believed would eventually benefit the state, he also sent numerous children to facilities where their deaths were almost assured, including many children who were themselves on the autism spectrum. While he was, by far, not the worst of the doctors who would have worked with autistic people at the time, he was nevertheless complicit in the deaths of vulnerable children, some of whom, ironically enough, were probably more like him than the doctors he was working alongside. 

Due to the fact that Asperger's works were published in Germany, they were relatively unknown in the United States until the 1980s and 1990s. As a result of the increased prominence of his work, Asperger's Syndrome was introduced into the DSM-IV in 1994, only to be merged with Autism Disorder (the condition described by Kanner) and a few other conditions under the broader banner of Autism Spectrum Disorder when the DSM-5 was published in 2013. Asperger does not appear to have been a good person, but his work did eventually bring awareness to the fact that people on the spectrum could be verbal and have high intelligence but still be on the spectrum and struggle with social interactions. However, like Kanner, he focused overwhelmingly on male patients, so, even when it was rediscovered, his research did little to help girls and women on the spectrum. 

In the late 1960s, autism was firmly established as a separate condition by the fact that it was life-long, distinguishing it from other conditions like intellectual disability and early-onset schizophrenia, and demonstrating the importance of keeping autistic children with their parents (rather than shipping them off to institutions, as was often done previously). While desinstitutionalization was a slow process, and by no means solved the problems faced by people on the spectrum, it was an important step forward. By 1990, disability advocates, who had been pushing for equal rights for people with conditions like autism for years, had made enough progress that the Americans with Disabilities Act was passed, preventing discrimination on the basis of disability and requiring that children with conditions like autism be integrated with their more "typical" peers in the classroom as much as possible. Furthermore, employers, public transportation, and schools alike were required to make sure that people with autism (and other conditions) were reasonably accommodated. Unfortunately, this law has been inconsistently enforced, but it has enabled people with autism to be educated and get jobs at a much higher rate than ever before. 

As autism became more broadly accepted in the psychological community, doctors and parents alike began searching for causes-and, more frustratingly, "cures"-for autism. Kanner, who seems to have influenced by the same line of thought that suggested that bad parenting lead to the development of schizophrenia, argued that autism was caused by unusually cold, self-absorbed parents, particularly mothers (which in turn led to the derogatory term "refrigerator mother"), which seems to have been the predominant theory until the mid-1960s. After the "refrigerator mother" theory was discredited, the focus shifted to potential biological or environmental causes. Among the environmental causes that have been suggested in playing a role in the onset of autism are certain foods, infectious diseases, brominated flame retardants, solvents, heavy metals, diesel exhaust, phthalates and phenols used in plastics, alcohol, drugs, prenatal stress, smoking, and, most infamous of all, vaccines. In 1998, a researcher named Andrew Wakefield published a paper in The Lancet that suggested that autism might be linked to the Measles-Mumps-Rubella (MMR) vaccine. From there, the story exploded, with Wakefield becoming an international celebrity almost overnight and the idea that vaccines cause autism (instead of one specific vaccine possibly being linked to it, as the article itself suggested) spread across the burgeoning Internet. This study has since been thoroughly discredited and retracted from The Lancet, with Wakefield himself losing his licence to practice medicine for misrepresenting data, lying about the symptoms of the children he studied, and for subjecting them to unnecessary medical procedures, but the myth that vaccines cause autism has frustratingly continued to spread. Most current psychologists, however, are agreed that autism has its roots in neurology. People with autism, it seems, are born with noticeably different neurology than their peers. 

The burgeoning Internet, as much as it was-and is-used to spread misinformation about autism, proved to be a boon for the autistic community. Not only could people on the spectrum gather to talk to one another about their experiences and problems at a rate that previously would have been unavailable to them, but people who struggled to communicate their thoughts or feelings in person had a much easier time doing so online. For many people on the spectrum, myself included, the Internet was the first place where they got to read about autism from the perspective of other autistic people...and it was revolutionary. The neurodiversity movement emerged in the late 1990s, primarily from these very sights. Autistic people began to demand that they be included in conversations about them and their future...and to insist that most autistic people did not want a cure for their condition, that people on the spectrum were incredibly intelligent and capable, and that they were not wrong just for being different. The Internet was also where women who had been diagnosed with autism really began to notice just how mis- and underdiagnosed girls and women on the spectrum are. 

Women on the Spectrum 

Since Kanner and Asperger, the two researchers whose work was most influential in the popularization of the concept of autism, focused their writings and work almost entirely on boys, girls with autism were overlooked for decades, not only because of the assumption that autism was primarily a male condition but also because all of the diagnostic criteria were based on autism as it appeared in boys. In fact, older literature sometimes described autism as something of an exaggeration of the male mind (operating under the troublesome assumption that all males, and all autistic people, are orderly, have excellent mathematic and spatial skills, dislike socializing, follow strict routines, and have extremely focused interests). 

As a result, most girls who did receive a diagnosis of autism were those whose symptoms were extremely apparent. Girls whose conditions were similar to the boys described by Asperger were almost completely overlooked, and for years, no one bothered to consider that autism might present itself differently in girls than in boys. As a result of this historical inequity, although in non-referred samples, there appear to be two to three men for each woman on the autism spectrum, in clinical samples the ratio is usually four-to-one or more. Furthermore, teachers underreport the levels of autistic behavior in girls. The end result is that they often go under the radar, especially if, like me, they are verbal. 

In addition to being underdiagnosed, girls are often diagnosed much later in life than are boys, running the risk that they will not receive the support and help they need to thrive. The gender ratio among adults on the spectrum is much closer than the gender ratio amongst children in large part because many women are not diagnosed until they are already adults. The average age of diagnosis for a highly verbal autistic woman (someone who, had they been male, might have once been given the diagnosis of Asperger's Syndrome) seems to be somewhere between 20 and 40 years old in spite of the fact that they have had their condition since birth. Most of them report realizing at a relatively young age that they were different from their peers, and the majority of them were bullied for their eccentricities-which were, of course, usually linked directly to the fact that they were on the autism spectrum (albeit undiagnosed). Many women and girls on the spectrum, in fact, figure out that they are autistic long before anyone else does. 

So, besides the fact that autism is generally perceived to be a condition that predominantly affects males, why do women on the spectrum get overlooked? The answer seems to be that girls present symptoms of autism differently than boys do, something that, as noted above, is not properly reflected in the current diagnostic criteria. The most prominent difference between girls and boys on the spectrum is that, on average, girls on the spectrum are better at "camouflaging". Girls, on average, develop complex social relationship at an earlier age than do boys, so girls on the spectrum are usually quicker to realize that they are different from their peers. As a result, many girls on the spectrum become quite good at imitating the social behaviors of others to avoid standing out, while others do what I did and stay on the social periphery, retreating into their own fantasy worlds but never acting out in such a way that would draw attention to their social difficulties. On average, girls who are quiet, do well in school, and don't misbehave (like most girls on the spectrum) are unlikely to be noticed and diagnosed. 

Other autistic traits that are particular to girls and women include an unawareness of trends or fashions, a dislike of things perceived as feminine (as a girl, I hated dresses, skirts, and the color pink, and to this day still don't like them), exhaustion due to having to play a role, high levels of anxiety when performing in social situations (I developed Social Anxiety Disorder by the time I was nine), and displaying different behavior at home than at school. (I was much more talkative and less reserved when I was with my family than I ever was at school.) Women also have different special interests than men, being more likely to focus on literature, the arts, environmental activism, animals, and other topics with relational themes than transportation, mathematics, or computers (two special interests that seem to be common in men on the spectrum). These differences can probably be attributed to the fact that men and women on the spectrum actually have brain differences from one another, differences that might well produce slightly different sets of behavior. 

In addition to how difficult it is for women on the spectrum to get diagnosed, they also have other problems that are unique to autistic women. Because our culture expects women to be better at social interactions than men, women who have difficulty with social interactions (so, basically all women on the spectrum) are received more negatively and judged more harshly than men who have the same problem. Women on the spectrum also tend to have more trouble forming friendships than men on the spectrum do, because female relationships are often based on complicated emotional and social exchanges that autistic people struggle to understand, while men often base friendships on activities, and are therefore simpler to understand. 

An additional problem, one faced by all people on the spectrum, is mental illness. Due to how difficult it is for people on the spectrum to fit in with their peers, they are at an increased risk for developing mental illness-and since women on the spectrum are more likely to go undiagnosed and less likely to be accepted than men on the spectrum, their rates of mental illness are particularly high, as the graph below suggests.

In short, women on the autism spectrum have faced discrimination throughout history, both because they are autistic and because they are specifically autistic women, and even today, autistic women have more struggles than autistic men. However, with the increasing awareness of both the voices of autistic people in general and autistic women in particular, great strides have been made, and I am confident that eventually, I will be able to be as accepted as a woman, as a person on the autism spectrum, and as an autistic woman. 

Resources

https://eds-a-ebscohost-com.northernkentuckyuniversity.idm.oclc.org/eds/detail/detail?vid=3&sid=c2395661-54fa-4110-bfab-228a11548714%40sessionmgr4008&bdata=JnNpdGU9ZWRzLWxpdmU%3d#AN=edsdoj.102ac5a1d4b642c69afb65b6128cfd27&db=edsdoj

https://eds-a-ebscohost-com.northernkentuckyuniversity.idm.oclc.org/eds/pdfviewer/pdfviewer?vid=3&sid=07c78fae-6f28-457b-96bf-808c304bce30%40sessionmgr4007

https://www.ada.gov/pubs/adastatute08.htm

https://www.aane.org/women-asperger-profiles/

https://eds-b-ebscohost-com.northernkentuckyuniversity.idm.oclc.org/eds/pdfviewer/pdfviewer?vid=4&sid=57f8ceda-6b8f-47f0-be53-7b8f05a6b2dc%40pdc-v-sessmgr03

https://eds-b-ebscohost-com.northernkentuckyuniversity.idm.oclc.org/eds/detail/detail?vid=2&sid=663ffe1a-d27b-447f-bed6-f4dc46cef11d%40pdc-v-sessmgr03&bdata=JnNpdGU9ZWRzLWxpdmU%3d#AN=edsgcl.640998686&db=edsgea

https://eds-b-ebscohost-com.northernkentuckyuniversity.idm.oclc.org/eds/pdfviewer/pdfviewer?vid=3&sid=f81c80bd-9f10-4c57-9146-4ab0db8083c8%40sdc-v-sessmgr02

https://www.google.com/url?sa=i&url=https%3A%2F%2Fpeoplesworld.org%2Farticle%2Fthe-invisible-oppression-of-the-autistic-female%2F&psig=AOvVaw25aQtQjRupDDUbm42W6BAn&ust=1615901889277000&source=images&cd=vfe&ved=0CAIQjRxqFwoTCIjy8-a1su8CFQAAAAAdAAAAABAD

https://www.google.com/url?sa=i&url=https%3A%2F%2Fwww.madisonhouseautism.org%2Fautism_in_women%2F&psig=AOvVaw2sDx5TYEuTZMIFzoaT8lRI&ust=1615949939710000&source=images&cd=vfe&ved=0CAIQjRxqFwoTCIC4me_os-8CFQAAAAAdAAAAABAD