Personal: Growing Up Undiagnosed

My story of growing up undiagnosed for autism is one that many AFAB people face, especially in the United States where we have privatized healthcare. I made my way through the mental health care system, including being hospitalized more than once, but I was not diagnosed with autism until 2019 when I was 20 years old.

At one point my active diagnoses were: social anxiety, generalized anxiety, auditory processing disorder, depression, and ADD. If you have experience with AFAB autistics, it does not come as a surprise that autism was overlooked. It took my pressuring a psychologist for them to consider that, rather than having each of these different conditions, I might have one condition that encompasses all of my symptoms. 

Healthcare in the United States does not have an effective form of interdisciplinary communication, so it is often up to patients and their families to request a review of their diagnoses. Treatment is often expensive, and being diagnosed as an adult is even more difficult than diagnosis as a child. This is why I support self-diagnosis in the neurodivergent community. 

I plan on writing about my experience getting a diagnosis, but growing up undiagnosed contributed to my severe mental health issues to this day. I grew up feeling like an alien amongst my peers, because I knew I was fundamentally different from them but never knew the reason. If I had known I was autistic earlier, I could have accepted my diagnosis and it would have saved me countless sleepless nights researching to find a label that fit my specific version of “quirky”. 

I don’t write this to place blame on any one person. I, and countless other AFAB autistics, were failed by the education and healthcare systems and fell through the cracks. This is part of what inspired me to create this organization, to try to make diagnoses easier to access.