Growing up as a queer person, I always heard a lot of accusations of “faking” being thrown around by my peers. I always felt like I needed to defend myself, like I needed to prove I wasn’t faking mental illnesses or dysphoria, or else I would be considered “invalid” and a liar. I never liked to step on toes or offend anyone, I hated attention drawn to myself, so I would just try to be careful not to make any bold statements about my mental health without consulting a doctor first in case I offended anyone. I’ve noticed more recently that many people in the neurodivergent community are pushing back against this oppression, and I always found that very inspiring and powerful because I never had the strength or inspiration to do that when I was a teenager exploring my gender identity and discovering my neurodivergence. I decided to write about this because more people need to know why some people may consider self-diagnosis. After all, it is becoming more and more common, and no one deserves to feel oppressed by the judgement of neurotypical individuals who don’t understand that struggle.

I want to start by addressing this prevalent movement when I was a teenager. I remember seeing on Tumblr a lot of discourse about teenagers glamourizing dysphoria and mental illness to seem cool or unique. At the time, I assumed that there were these terrible evil people who were out there doing this. Still, as an adult, I have started to question if anyone was doing this or if we were all just lost teenagers grasping at some explanation as to why we felt like shit all the time. I don’t think anyone was excited about mental illness. I believe people were just excited by the prospect of a solution to their suffering, only to be met by judgement and criticism. I don’t see this discourse as often now on social media, but it has affected the thought process of how we talk to people who openly talk about mental illness. We expect proof of others’ suffering before we provide any sort of sympathy and support, and it makes me question what right we have to this information? Why must others provide confidential medical information to us to prove that they are worthy of support?

Before addressing why some may not want to get a diagnosis, I want to clarify I have been diagnosed professionally and why I chose to get a diagnosis while still advocating for those not seeking a diagnosis. I was very indecisive at the beginning about getting a diagnosis, my Provincial healthcare coverage doesn’t cover psychologists, but I was very interested in seeking out a diagnosis for my application for disability. While I don’t personally see autism as a disability, my social skills, dyslexia, and dyscalculia made it very difficult to find a job, so I decided it was time to get a formal diagnosis. I was also at the time going through a gender identity crisis (for lack of a better word). I was on testosterone for three years before realizing that my gender identity was something I wasn’t done experimenting with being feminine, and I wasn’t comfortable presenting strictly masculine anymore. After years of insisting to my family, I was a man, I would never be a woman, and I would never go back. I felt humiliated. While I now understand that gender is fluid and changes, I was very hard on myself because of how my family reacted to the announcement. I felt like my family would never accept my autism without a diagnosis because how could they trust me when they thought I was confused and or lying about my gender identity this whole time? I now recognize these thoughts are attributed to emotionally abusive reactions to my transition. The diagnosis helped validate my struggles and allowed me to begin the journey of being able to trust my instincts rather than question them to satisfy my family.

One of the main reasons most don’t get diagnosed is financial constraints. 9.6% of Americans lack health insurance. For those with insurance, in many cases, psychological assessments aren’t covered or have a hefty copay. On average, an autism assessment costs roughly 2000$. Autism can’t be treated or cured, and there is very little therapy catered to autistic adults. Hence, there is no benefit to the individual other than confirmation of what that person already knew. Because of this, there is very little reason to make the out-of-pocket expense for diagnosis. Even if it is fully covered, there are other reasons one may choose to avoid an official diagnosis.

I’ve met a number of undiagnosed individuals who have given me many non-financial reasons why they chose not to get diagnosed. While I am listing multiple reasons why someone might not want to be diagnosed, I want to disclose that everyone has their reasoning for their decisions. Everyone’s reasoning for decisions about their own physical health decisions is equally valid, and not everyone owes you an explanation or even a reason why they made that choice if they’re not comfortable.

Without further ado, let’s move on to why individuals might not want to get a diagnosis. The first reason I want to touch on is that many neurodivergent people fear the loss of freedoms. In many conservative places or dealing with ignorant government/health care professionals, there’s always a risk of losing independence or rights. While this discrimination may not always be legal, there is a lot of injustice which happens to disabled people regardless. I’ve met people scared to get a diagnosis out of fear of losing their job, licence, or children. For some, the risk of losing these things far outweighs the benefit.

There is also a significant lack of trust in the medical field. There is always a risk of misdiagnosis, gaslighting, aggression, and medication pushing in getting a diagnosis, especially within minority groups such as BIPOC, female, queer, and or trans. This process can be mentally draining and dangerous for many and not worth the risk. For this reason, many don’t even get to the stage of seeing a psychologist because they recognize their doctor will not advocate for them, and they don’t want to put themselves through that strain of self-advocating when they feel that there is not that much at stake.

Another common thing I have heard within the autism community is that they feel there is a lack of need for diagnosis. Unfortunately, some people can go years without recognizing their autistic traits, not even questioning their neurotype until they meet someone with autism or until their child is diagnosed. This doesn’t make their autism less valid. It just means they weren’t afforded the educational resources to help them to recognize their autism. They could have been misdiagnosed and assumed they were taking the wrong medication their whole life or thought their struggles were neurotypical struggles. Whatever the reason, an assessment might not be valuable at their age. They’ve reached an age where they’ve found their own coping mechanisms that have worked for them, so diagnosis no longer feels worthwhile, and they feel no need to overwhelm an already overloaded medical system just for the sake of confirming a diagnosis.

Diagnosis can be a helpful tool when seeking resources. Still, many don’t find a diagnosis helpful and don’t feel like they need it to feel validated in confirming their autistic identity. And while it might feel frustrating, you must remember that these decisions are this person’s decisions and theirs alone and, in the end, do not affect the wellbeing of the more significant autistic population. Providing support to those you care about is essential because building healthy relationships relies on unbiased support. To question the identity of your loved one can risk rifts in your relationship, which is not worth being right, so we must respect our loved ones’ decisions regardless of personal beliefs. It is also detrimental to the well-being of autistic folx to make resources and safe spaces available to those who self-identify as autistic. Often those who self-identify as autistic are lower-class minority groups who can benefit from these safe spaces the most. In the end, exclusion because they may receive unbeneficial support or advice ends up causing more harm than good to minority groups who are barred access to safe spaces, which is why educating on the validity of self-diagnosis can help save autistic lives.