What is autism, and what is my experience with it?
This year I was diagnosed with high-functioning Autism Spectrum Disorder (ASD), but like everyone on the spectrum, I was born with it. High-functioning autism is defined as someone on the spectrum who is both independent and crosses a certain threshold of cognitive ability. Because it has no bearing on the qualitative experience of how an autistic person feels about their own existence, the term has been criticized heavily by autistic people. Growing up, I had a lot of problems both at home and with my classmates, so I did what many high-functioning autistic people do, I focused on school.
In retrospect I was very clearly autistic. Since I was young, evidence was present; from organizing my dolls to look aesthetically pleasing instead of playing with them like most other girls, to my reactive fears of knives and anything approximating the mention of sex. I learned social conventions by studying them artificially. I had the same breakfast every day, and if we didn’t have one of the ingredients from the correct brand needed to make it, I would skip the meal altogether. My teachers were my favorite friends for the longest time, and when I started dating boys, I got more interested in older intellectuals who had more time to reflect on social interactions, as opposed to taking their social skills for granted. All of these are classic examples of how ASD presents in girls.
The Screwed Up World of autismspeaks.org and Overall ASD Research Funding
Unfortunately, I was not diagnosed with ASD until I began university for many reasons, one being that there is very little research done on diagnosing ASD in women since most funding goes towards Autism prevention. Unfortunately many neurotypical people, even those with personal connections to the autistic community, still interpret autism as a disease that needs to be prevented. People who prioritize autism prevention research often hyperfocus on painful autistic meltdowns, which actually stem from being in a non-inclusive environment, rather than choosing to look at my strengths.
While I do not have all the textbook autistic qualities, autistic people often excel in tasks that are very difficult for neurotypical people, but rather than seizing this opportunity to integrate us, we are cast aside as disabled and broken. When donors treat autism as a disease to be prevented, it creates problems with allocating resources to diagnosing, managing, teaching about, and accommodating autism. This approach towards understanding autism ignores the ways in which the detail-oriented, solitary workflow, and innovative qualities generally attributed to autism have revolutionized the advancement of entire fields of study like math, physics, economics, computer science, biology, engineering, and chemistry.
How Failed Research Funding Disproportionately Fails Women
Despite the obvious problems in overall ASD research funding, autistic women suffer a double blow because their symptomsare understudied, leading to misdiagnosis and deprivation of access to proper accommodations. Very few psychologists have enough awareness and training around ASD to recognize the signs in women because it is considered a specialization.
Unfortunately many neurotypical people, even those with personal connections to the autistic community, still interpret my autism as a disease that needs to be prevented.
Even after getting my diagnosis, I realized that ASD- specialized therapists were much more expensive than general psychologists, especially those that understand how to support women, so I was priced out of proper treatment beyond pure diagnosis that I needed to get accommodations for school. I also have ADHD, so this makes school and treating me more complicated because my symptoms might be at odds with autism in some regards and compound in others.
If I need two types of specialized aid, how many doctors should I see every week? How do I get them to communicate efficiently? What can I afford? How do I get credit for my schoolwork when I am wired completely differently? What job will capitalize on my divergent outlook when my brain opposes almost all frameworks? How can I get to an autism- friendly atmosphere, like academia, when McGill’s grading systems are not reflecting my profound understanding of content?
If it is not caught early enough, girls will tend to be more successful in suppressing their needs in order to fit in. This can create huge problems down the line from developing an eating disorder, Obsessive Compulsive Disorder (OCD) and Borderline Personality Disorder (BPD) misdiagnosis, depression, and anxiety, only to realize after trial by fire, years of therapy, and thousands of dollars in hospital bills later that these conditions in their own right were in fact symptoms of a larger predicament not being properly addressed. Like many women, I was diagnosed because of the emotional toll that controlling my ASD took on my mental health in order to appear neurotypical. I was not diagnosed as a kid because of my female autistic traits.
The general path of diagnosis is one of being mistakenly or incompletely diagnosed with:
– BPD: Because our autism can make some of us put on a face for each social encounter as a part of our ability to conform and be mistaken for BPD.
– OCD: Because some of our autistic desires to live in a static, predictable environment can lead us to being misdiagnosed with OCD.
– Eating Disorders (ED): Because our autistic aversion to certain colors and textures can limit our diet so much that it gets mistaken for ED, or our autistic understanding of being a woman in society and following strict rules can lead us to seek out unrealistic and unhealthy body type standards.
– Depression/Anxiety: From living in a way which is not supportive of our needs and does not properly address our impairments.
Disclaimer: I am not a doctor, and I myself only identified with one of those four. I also have ADHD, so my experience mixes with my autistic symptoms.
What does media have to do with it?
Growing up I knew I wanted to end up in a social environment where people loved me and where I no longer felt stupid. Thanks to The Big Bang Theory, that social environment looked to me like academia.
The Big Bang Theory draws a lot of criticism for its portrayal of Dr. Sheldon Cooper, a physics genius demonstrating many stereotypical autistic traits such as insistence on following rules and routines, problems picking up on sarcasm, inflexibility, hyper-focus on one topic (such as trains), and being detail-oriented. Despite all of this, the writers refuse to admit any intention of writing Cooper as being on the spectrum or with any other “pathological” condition. For the purposes of this article, we will assume Sheldon has ASD.
Dr. Cooper’s character has gotten a lot of criticism, especially from people with close ties to the ASD community. Years before my diagnosis, I remember getting yelled at by my boyfriend at the time for liking the show. He had a brother who was low-functioning, and the portrayal of Sheldon was highly offensive to my boyfriend because of his experience with family. In retrospect, I realize now that his brother had ASD, and I only realized Cooper exhibited ASD symptoms after I got diagnosed with it myself.
When I got diagnosed with ASD, the world started to come together. On the specific topic of The Big Bang Theory, I realized that I loved the show because it portrayed a version of life where I could be surrounded by people that would live with me and support me despite my issues. I loved that whenever characters called Sheldon crazy he would reply “I’m not crazy, my mother had me tested.”
I believe this is a huge deal for people with ASD because it repeats and reconfirms the idea that autistic people are not crazy. Sheldon actively exists in a safe enough space where he can point out illogical neurotypical innuendo that non-disabled people take for granted.
What many people fail to understand is that another character on the show, Dr. Amy Ferrah-Fowler, is a classic example of how high-functioning autism presents in women. She’s awkward (she gave a massive painting of her and her friend Penny to commemorate their friendship), longs for connection, is detail- oriented and intense (such as when she was given a tiara and started jumping for joy), works very hard to fit in (her reactions to going to a bar for the first time and getting her first pair of heels), but she is private about her lesser- accepted hobbies such as basket weaving and playing the harp. Dr. Ferrah-Fowler, like many but not all autistic women, has low self-esteem and settles for romantic partners like Sheldon, who do not give her the attention she wants and deserves.
Unlike men with autism, women are often actively aware of their social ineptness, and it often makes us feel inadequate, whereas men with autism might not really care for interactions. Women with autism are masters at mimicry, so it makes sense that for the first episodes of being on the show, Amy adopted Sheldon-like communication strategies in order to better integrate into the group. Her research on ape brains informs her mechanical understanding of social phenomena. For example, Amy takes her lab observations of primates to inform her about human relationships, describing Bernadette as the “weak link” and easy target in the friend group because of her small stature and kind-nature, despite the fact that Bernadette has the most demanding voice of the whole group. This shows us the struggles that Amy has in her quest to decode and understand human interactions from the safety of her primate lab. All in all, if one were to go so far as to criticize the representation of autism in Dr. Cooper, they would also have to know enough about high-functioning autism to address how the show presents Dr. Ferrah-Fowler.
Unlike men with autism, women are often actively aware of their social ineptness, and it often makes us feel inadequate, whereas men with autism might not really care for interactions.
For me, Sheldon is also an example of someone who is able to do brilliant work and gain respect from society without any need for good social skills. Not once in the entire show did Sheldon ever have a characteristic meltdown aside from complaining. Both of these things were comforting to me before I had the information to understand the pathology I was relating to because it gave me the impression that if I continued to work hard in school, I would find my own circles where I would be valued for my labor. Sheldon represented the ideal of someone who has gotten to a point in his life where he was able to manage embarrassing meltdowns. For years, I was afraid that I would never get to the point where I could manage my feelings and feel like I had as much control over my life as “normal” people. Working a 9-to-5 job is still something I worry about.
One of the most meaningful episodes of The Big Bang Theory to me, “The Itchy Brain Simulation,” focused on Sheldon’s insistence that Leonard wear an itchy sweater until a long-overdue DVD rental was returned. “You wouldn’t make jokes if you could feel the way that I feel,” says Dr. Cooper, referring to his ASD tendencies. In the end, Leonard finds this out after developing a horrible rash from the sweater that the DVD issue had been resolved years ago, and Sheldon had orchestrated the entire situation to educate Leonard to have some empathy for the costs of living with ASD. Leonard has a tantrum, which might be the only time the audience sees Sheldon’s experience through neurotypical eyes. Sheldon admits in this episode to constantly having internal mental breakdowns which may come across as baseless complaining and nonsensical demands, but the fact that Dr. Cooper’s meltdowns are never depicted on a show demonstrates the progress he has made over the years in managing his reaction to triggers. For this reason, I consider Sheldon to be a badass.
In the end, I want to leave you with this thought. Of course ASD is underrepresented in film, and of course autism looks different for everyone. However, the discussion on representation has to include the real, diverse perspectives of actual autistic people, not just people who perceive and live with those with autism. Fundamentally, I don’t experience the world in the same way as most people do, which will lead me to other interpretations.
On the specific topic of The Big Bang Theory, I realized that I loved that show because it portrayed a version of life where I could be surrounded by people that would live with me and support me despite my issues.
Maybe part of my individual relationship to autism means that I need more visible, or what you might call obvious, symptom portrayals in media in order to access the purpose of characters and furthermore be able to relate to them. The point is that autism does not have to be disabling, because if progress is futile, why go to therapy for it or fight for accommodations?
Do autistic people need to adopt a neurotypical external presentation to be happy? Intuitively, the classic female experience with ASD shows us that pretending doesn’t help us live happier lives. I would argue that Sheldon and Amy would be worse off if their symptoms were concealed. Do autistic people need to learn to enjoy what triggers us to be happy? Not really. I am perfectly happy never putting a carrot in my mouth ever again and telling most people that I simply have allergies!
After all of this, try to look at professors through a different lens since academia has a high proportion of autistic people, especially in math-intensive fields. With regards to being uncomfortable with portrayals of Sheldon, critiquing a representation of neurodivergent people without properly understanding the way a neurodivergent person interprets the world might actually stigmatize someone’s positive relationship with their surroundings.