My parents never went to college. As a result, the expectations placed on me as a child were high—so much so that those same expectations directly contributed to my failure to meet them.
These days, I work as a freelance writer, author, and game developer. But, this wasn’t the path that was plotted out for me as a child, irrespective of the struggles that I was facing at the time and to this day. Like most autistic women, I was not diagnosed as a child. Unfortunately, this is true for far too many of us, with a whopping 80% of women and girls with autism going undiagnosed before the age of 18. The diagnostic criteria for autism were designed with the needs and behaviours of young boys in mind, not taking into account that women sometimes present differently, and are also expected to act differently as well.
I was always told that I was a smart kid. And boy did it show. By the age of two, I was reading and, in kindergarten, I would awkwardly approach my peers to lecture them at length, not letting anyone else get a word in, about what I read, whether they cared about what I had to say or not. I would walk on my toes, flap my hands, and twirl my hair obsessively. When others yelled at me for this behaviour, I would get so stressed out that I’d do it even more. I now know that this was, and is, stimming and a common autistic behavioural profile.
In a girl, this behaviour is seen at best as “quirky”, and at worst annoying and something to target for bullying. In a boy, while it may have caused bullying as well, it also would have been taken more seriously as a warning sign to follow up with a paediatrician.
I did not have an easy time in primary or high school so I threw myself into my special interests as a way to cope. Unfortunately for me, one of my special interests was medicine. It was decided for me that I would therefore pursue medicine as an adult, starting with nursing school, so that I could work while achieving a “real” goal. My other interests were seen as unworthy of even consideration for a career.
A disaster waiting to happen
Looking back, having a passion for my special interest alone was never going to be enough. Knowing what I do now, it was almost comical to send someone with the clear social deficits that I have into one of the most socially and emotionally demanding fields in the entire healthcare industry. And truth be told, my heart was never in it. I bore an intellectual interest in the subject, but I had little to no desire to interact with actual people – a key aspect of any role in medicine that didn’t involve confinement to a lab.
I remember joking at the time that I would be much happier as a lab technician if I had to go into healthcare at all, but all those around me wouldn't have it. I was either to become a nurse and then a physician, or nothing at all. It was presented to me as a dichotomy, one that with my more rigid ways of thinking I was unable to find any way out of.
The trouble began for me almost immediately. Nursing is a socially demanding profession. You need to connect with patients from all walks of life, deal with an ever-changing and high-stress environment, and demonstrate an ability to bounce back from setbacks of all kinds. These are all things that most autistic people struggle with. It's even worse when you walk into that situation, as many women do, without knowing that you're autistic.
Much like in my childhood, the difficulties I experienced in nursing school weren't seen as understandable aspects of my neurodevelopmental condition, but as personal moral failings. Even though my grades were fine, I found everything to be an uphill battle. I didn't understand why practical instructors would get upset with me seemingly at random, though I didn't believe I was doing anything offensive. At one point, an angry instructor even asked me point blank if I had a mental health condition or autism. I answered no, at the time. After all, no one had ever diagnosed me with one.
It's often said that autistic women mask better than autistic men. I don't believe that to be true. I think it's more so that we're expected to mask more than autistic men are, so we're treated much more harshly when we don't. Instead of something innate, I believe that it’s a result of female vs male socialisation and expectations. It's a big contributor to why autistic women experience more depression, anxiety, and internalising behaviours than autistic males.
Unlike regular classes, clinical rotations are pass or fail. And whether or not you make the cut depends largely on the discretion of your instructor. Your ability to connect with your patients, navigate challenging situations, and understand subtext, plays a large role in whether or not you make the cut. And because of issues that I didn't even understand at the time, I ultimately did not. Failing a clinical rotation, even if your grades in the course overall were exemplary, results in a failure of the course and the semester as a whole. Even after an appeal, there was nothing that I could have done to absolve the social deficits I displayed in my rotation or progress in the program.
For a long time after I left nursing school, I struggled with my failure. I couldn't understand why, no matter what I did and for my entire life, people just didn't like me. I couldn't help but blame myself for it. After all, everyone else seemed to.
Reflecting on experience led to answers
Some parents weigh the pros and cons of getting their child assessed while they're young, not wanting to slap them with a “label” that will affect the course of their development and follow them for life. There is a certain logic to that. But it's based on false assumptions. Like any late-diagnosed autistic person will tell you, not receiving the “label” in childhood doesn't make you less autistic. It simply deprives you of necessary support. It leaves you feeling like your struggles with social connections are because you're inherently a bad person, rather than because of a difference in the way your brain is wired.
I don't know if my childhood would have been that different if I'd been diagnosed young. I probably still would have been bullied without mercy. But I do know that I would have had the self-knowledge to choose a field that was better suited to me. I would likely have had better coping skills to manage the demands of a college degree as well.
When I was 25 years old, more out of fractured self-esteem than anything else, I decided to pursue higher education once again. This time, after self-reflection and being free of my family, I chose something with far fewer social demands: software development. It wasn’t my first choice; I wanted to go into graphic design to supplement my interest in web development. However, the chance to add application development to my freelance skills repertoire made it appealing. All the same, I soon noticed some of the same struggles yet again, namely difficulties communicating with my instructors and classmates. By that point, I suspected that I may be autistic due to long-standing social and sensory issues, along with others in my life pointing out the possibility, and within a year, I sought out an assessment as an adult.
In the words of my diagnostician, you “could have seen it from space”.
The power of the right supports
Some will say that there's little benefit to pursuing an autism diagnosis in adulthood. I disagree. Not only did it put a concrete word to a lifetime of struggles, but it also opened some doors. With the correct disability accommodations, I was able to get needed additional time on tests. My instructors were aware of the reason for my communication difficulties, and we were able to work around them with more patience and understanding. My differences were taken into account, not as something I was doing to make others angry, but simply as a difference in my brain that we needed to work with, and not against.
There's a certain grief to late diagnosis. It's a grieving of the life that you could have lived differently, had you only known why you felt so different to everyone else around you. Had you only known why what works for others didn't work for you, no matter how hard you tried.
But, it's sometimes better late than never at all. If I hadn't sought out a diagnosis, I don't doubt that I would have burned out on my second attempt at a degree out of frustration. With it, I was able to achieve my goal of higher education and feel better about who I am as a person.