I Sacrificed my Health for Other People’s Comfort

I may never stop grieving the years I’ve lost and the poor health I’ve acquired from not having an autism diagnosis for most of my life

They failed us because they didn’t care to study us. Plain and simple, no one cared about us late-diagnosed autistic adults when we were growing up. The blame is on patriarchy and white supremacy. Same story, a different song.

For decades white cis males were the only children studied for autism. Despite Soviet autism researcher Grunya Sukhereva studying autistic girls in the 1920s, few autism researchers in the last 90 years have included females in their autism studies. Until the last six years.

The “Lost Generations of Autism” weren’t simply missed as we like to say, we were purposefully and willfully stepped over as we fell down before the mental healthcare system, emotionally dying and many times literally dying from years of masking.

As we masked the decades away, we were gathering personality disorders, autoimmune disorders, major depressive disorders, anxiety disorders, eating disorders, addictions, CPTSD, and becoming victims of physical and sexual abuse at an alarming rate.

No matter how you slice it, masking is catastrophic to the overall health of us autistic adults who were missed and grew up hiding our “weirdness" because we believed we were broken neurotypicals.

My health is deteriorating fast. I am struggling every day. I am only able to write this because writing is a passion for me and even in times of crisis and poor health, I vitally need my special interest to keep me sane.

I am going to be evaluated for a major autoimmune disorder, that if it exists, will have gone unchecked for decades. I see a rheumatologist soon, but I worry I will end up in the hospital before I make it to my appointment.

I am seriously struggling to stay hydrated despite drinking the proper ratios of water and electrolytes and my blood sugar readings are weird and all over the place. I have a laundry list of symptoms but I will spare you all of the details. My blood pressure is elevated often and there are a host of test results that are leaning toward an autoimmune disorder.

I already have 15 different medical conditions: Postural Orthostatic Tachycardia Syndrome, Neurally Mediated Hypotension, Hashimoto’s thyroiditis, Multinodular goiter, reactive Hypoglycemia, GERD, gastroparesis, Irritable Bowel Syndrome, hiatal hernia, uveitis, endometriosis, interstitial cystitis, fibromyalgia, Mast Cell Activation Syndrome, and a cavernous malformation in the brain (of course not all of these conditions were acquired).

The grief I feel over a late autism diagnosis isn’t just because people bullied me or abused me.

It isn’t just about the CPTSD that I acquired due to continued sensory trauma no one acknowledged or cared about and social trauma over repeatedly losing friends and not knowing why.

It is about the years I lived with chronically high cortisol levels and actively hated myself. Both did a lot of damage to my body.

It is most definitely about the damage to my health. It is about the fact that my life expectancy is shortened due to being autistic because capitalism and neurotypical culture is killing us. Literally.

If autistics don’t die by accident or commit suicide before the age of 36, we will likely live 10–15 years less than our neurotypical peers. For those of us who masked for decades, we may die from the autoimmune disorders and mast cell disorders that have been triggered by the high cortisol levels we get from masking.

I am not just sad, I am livid.

I thought my grief was largely behind me until I found out recently from my doctor that I could have a major autoimmune disorder. Now, I am back crying and raging about the lost years and worrying that my time left might be briefer than I originally thought.

Four days ago, I saw a trailer for a tv series called A Kind of Spark, starring a young autistic actor in the part of an autistic girl in a show based on a novel by an autistic author.

When I saw that trailer and how the young protagonist knew she was autistic at such a young age, I cried so hard for the younger me that never knew.

The younger me that was so confused by people, never measured up, and would grow up to be a miserable, poorly functioning undiagnosed autistic adult who was judged by everyone so harshly including herself.

Some days the desire to time travel is agonizing and I cry over the pain of it not being a reality. I long to go back and have a do-over in my life.

I know that my life would have still been hard and perhaps not even better, but I would have known and perhaps I could have given up the masking that has devastated my body.

I may never stop grieving despite my best efforts to put it behind me. I have gained self-love post-autism diagnosis and that is a precious gift, but the price paid to survive was too high.