Late Not Less: Autistic Adults Are Frequently Misdiagnosed

Megan Flamand (she/they) from Surrey, BC, is an Indigenous Child and Youth Care Worker for Surrey Schools and an autistic adult. Her story shows how bias in the medical system can lead to being misdiagnosed and how barriers in the healthcare system can limit access to care.

Trigger Warning: This conversation includes references to mental health, childhood neglect, addiction, and the struggle of being undiagnosed as an autistic individual.

Realizing that I’m autistic

I had many moments growing up where I questioned possibly being autistic, but the moment I really realized I was autistic was about two years ago. I have been dealing with a mental health diagnosis for four or five years, and two years ago, I had a very hard time with my mental health. I started questioning my Borderline Personality Disorder (BPD) diagnosis after spending some time in an inpatient facility with people diagnosed with BPD and other mental health disorders. This led me to think I did not have BPD after being around people who really struggle with it. I then started researching similarities between BPD and autism, and it made a lot of sense to me and the things I struggle with. I spoke to my mother about how I behaved as a child, and she let me know my parents did try to get me diagnosed with autism at age two and were unsuccessful.  

An undiagnosed childhood

I was very particular as a child, starting very young. If my buttons were not done up in a certain way, I would become super agitated and have a meltdown. I would get sensory overload very easily. I rocked back and forth repeatedly for hours when I was overstimulated and to self-soothe when I was tired.  I was aggressive very young. I did not like to be held, even as a baby. I did not like physical touch, and when my family tried to touch or hold me, I would bite and scratch them. I had specific interests and hobbies; I liked role-playing with my toys in peculiar ways, and I was a social kid but liked playing alone. Until high school, I was placed in alternative programs in school for behavioural issues, including lashing out when I was overwhelmed. I think all the behaviours I exhibited were less behavioural issues and more a reaction to my environment as an undiagnosed autistic kid. I struggled to grasp a lot of different topics in school. I am a visual person and always have been, so creative classes were more suitable for me. 

I think I was never diagnosed because I was the youngest of four children, and when my parents did try to have me diagnosed, they were told I would outgrow the strange rocking and behavioural issues I was exhibiting. Girls in the 1990s and 2000s were not often diagnosed with autism, and there was little research about autistic traits in females. My parents were pretty neglectful in my childhood, and what I was displaying was blamed on my having an ‘attitude problem’ or being a ‘problem child.’ 

I have always struggled with relationship building. I am able to be social and make friends, but I was unable to manage my relationships effectively. Although I did maintain them growing up, they were often toxic and unstable. Because I was labelled as a problem child so young and known to be reactive, I struggled with my self-worth and maintained the “bad kid” persona. Eventually, I fell into a bad crowd that led me into alcohol and drug use very young. I also had family members who struggled with this, so I wasn’t punished. Rather, it was invited. I started working in retail and moved out when I was still in high school because living at home was not good for my well-being. My parents did not take care of my basic needs, so I had no choice but to work and take care of myself. I did graduate on time with my peers, but I had to grow up quicker than them. I struggled with addiction for quite some time. I didn’t go to college until my mid-20s. I decided to become a social worker because I was good at helping others who faced adversities, as I knew that experience well. I have always been resilient and determined, which helped me on my journey. Although it was not easy, I am now a successful adult, and I work with youth in schools who have similar experiences to the ones that I had growing up. Some of those kids are autistic, and I see my young self in them. 

What’s changed?

Now that I am aware I am autistic, I am less hard on myself. I have always been really hard on myself. I always wondered why things were so much more difficult for me than for my peers, and it always came down to the fact that I was “crazy” or so reactive, making it very hard for me. But now I know I wasn’t crazy and that I’m not crazy and that things are more difficult for me because I am neurodivergent and I grew up in a world that is neurotypical amongst peers that were neurotypical, and knowing that now I am proud of myself and how far I’ve come despite the labels I was given and the harshness I experienced.  

Seeking diagnosis

I have not gotten a diagnosis as an adult for a number of reasons. Firstly, I was diagnosed with a significant mental health disorder based on symptoms very similar to autism. I also have not received a diagnosis because it is costly, and I do not have the funds to pay for a private assessment. I face systemic barriers because I am an aboriginal female, and the system of medical care for mental health—and autism as a whole—were built on studies on white men. My symptomology is not comparable to a white man’s experience as an Aboriginal female. I don’t think I sought out a diagnosis because I have had poor experiences as an Aboriginal female regarding healthcare and mental health for as long as I can remember. My experience has really been vilified. That has stood in my way of seeking the diagnosis until recently. I have been in therapy on and off for six years and have done consistent therapy for two years. It has helped me deconstruct some thoughts about my mental health and presumable autism. 

I think the most important change to come from a diagnosis would be my own perception of myself, knowing I’m not crazy and that the presumptions I have faced have always been inaccurate. And that would improve my self-perception. 

I would hope more counselling and therapy would become accessible, but that may be a pipe dream. There is a lack of resources for people with autism and mental health in Canada, and I do not see changes anytime soon, especially around women with autism. But, the more women and girls come forward seeking out the diagnosis, the more I hope to see change and understanding.  

As an advocate for youth and a previous social worker for vulnerable populations, I may be able to evoke some change when it comes to advocacy and awareness around autism diagnosis. I think I would build more personal drive and motivation toward this.  

What more people should know about autistic adults

I would encourage my younger self to seek out diagnosis way younger and not buy into stigma. If I had sought out a diagnosis in high school, that may have led to much less struggle and adversity. I would tell myself to treat myself with kindness and the gentleness I would have wanted from my parents and the adults in my life. And that all of the hardship I went through will eventually lead to me making changes in the lives of young people in the future. Although that might have seemed impossible to me then, I am doing exactly that. 

I want people to understand adults with autism don’t look a certain way, they don’t always have the same symptoms, and they can do hard things and be functioning members of society. They can live independently, work, and get married, and you would never know unless they told you they were autistic. You may not know, but the person next to you could be autistic. The autism spectrum is not a severity level. It is a very fluid spectrum, and there are a lot of misconceptions. You don’t need to treat people with autism differently, just treat them with dignity and respect like you would anyone else.