Relief and Grief in Equal Measure': Readers React to The Doe's Autism Series

Editor’s note: After The Doe published our series on late-in-life autism diagnoses, we received an outpouring of feedback from readers who’d had similar experiences. These are just a few of the compelling stories that were shared with us.

I'm 37. I got diagnosed three weeks ago. I've been sucked into a whirlpool of recollection, reconciliation, and relief. I can't begin to describe how humanizing it has been. I have always, always felt like an alien. Now I know I am an alien, and not just... broken.

—Uhbeep

I felt great about it and so relieved after a late diagnosis at 35. Then I started telling people, and their reactions were so overwhelmingly negative that it hurt badly. There is so much stigma. Half of the people I considered friends aren’t in my life now, or they just aren’t talking to me anymore.

Anyone who makes it through a late diagnosis is a hero. On top of negative reactions to something that felt joyous to me and like a beautiful discovery, there’s almost no support for adults.

—Luuxedeluxarts

Whenever my childhood would come up in conversation, I used to tell people my mother was a sociopath, and my father was a pedophile. That shut people up real fast when they didn't understand why I'd gone no-contact in 2015 at the age of 34. Both of my parents are undiagnosed autistic, as are my sister and most of my relatives on both sides—small-town Hoosiers who don't trust doctors. Some on my father's side even believe autism doesn't exist.

Sadly, like many, my own journey to diagnosis came with the loss of my entire family because it meant breaking abuse cycles in a large family with multiple narcissistic-type personalities. Like toxic family systems do, mine was all too eager to make me the black sheep when I became too physically disabled by the progression of my then-undiagnosed rare genetic diseases (and subsequent autistic shutdown) to withstand the abuse. Mom had already convinced everyone I was a liar when I was in kindergarten after I outed our father for molesting us, which made it easy to convince them my disability was an act as well, and they withdrew their support entirely.

My mother and her siblings were put into an abusive group foster home when she was eight years old because their mother was institutionalized under a diagnosis of paranoid delusional schizophrenia. Treatment at the time for schizophrenia included electroshock therapy, and my poor grandma Vivian was ruined by it. I only ever saw her twice in my life, and she was terrified and mute the entire time. Knowing what I do now about not just my own autism but also my other genetics, I can't help but suspect Vivian might have actually been autistic with adrenal issues like me. If she'd had a proper assessment, diagnosis, and supports, maybe she could have been the loving woman and mother she wanted to be, and the decade of abuses my mother endured in foster care wouldn't have made a monster out of her.

That's where part of my moxie comes from—vindication for Vivian. If I can help anyone avoid the kind of path my maternal bloodline laid out for her, her children, and her grandchildren, then I will have made this world a better place.

—TwiggyJenLandia

My son was just diagnosed and he is 14. The diagnosis explains so much. My husband, on the other hand, was just diagnosed with ADD at 48 and he feels like he was cheated in life. Had he been diagnosed and treated as a kid, his life could have been so different. He has struggled so much with job loss because of his lack of focus and feeling like he is worthless when he was fired. He always felt like he was giving each job his all. He is still struggling to this day [because] his doctor won’t give him the proper medicine due to previous drug abuse.

—Jjillwalls

"It's like having a key for the locked door that has always been in front of me."

[I was also] diagnosed with ADHD and autism at 47, added to my previous diagnosis of depression and anxiety. [I’m] finally pursuing and getting treatment. It's like having a key for the locked door that has always been in front of me. One of the things that isn't said in mental health is that if you have a co-occuring disorder, and you treat some and not the other, they will all become worse. We need insurance to recognize mental health care as health care. We need testing, treatment, and medication covered by health care. We need all of those costs to stop being so prohibitive that people wind up where people like us are today. It isn't our fault. It isn't our parents’ fault for living in a world where these conditions were not public knowledge and were spoken of as threats rather than care. Make no mistake that we are here because of the greed of others.

—Onelettername

I grew up with multiple diagnoses: borderline personality disorder, anxiety, depression. Those diagnoses answered some of the questions I had about why I move through the world the way I do, but not all of them. It wasn't until I finally figured out that I have a combination of autism, ADHD, and complex PTSD that I fully understood who I am. I thought I couldn't possibly be autistic because all the representations of autism I saw were the stereotypical “Good Doctor” or “Rain Man,” and that wasn't me. I was lucky to have autistic friends who taught me how differently autism can present in different populations. 

Finally finding that combination of diagnoses immediately ticked every single box as to why I have issues with canceled plans, sensory issues, fear of abandonment, and crippling inability to keep up with “adult” tasks like cleaning and budgeting. My whole life, it felt like everyone else was handed a how-to manual, and someone forgot to give me one. A classic square peg in a round hole. Finding out my brain is literally wired differently brought relief and grief in equal measure. Relief that there was an answer that made sense, and grief that I was battling uphill my entire life, more than 35 years, before I finally understood what caused my issues, and what accommodations I could make in my life to alleviate many of the symptoms. 

The more I talk to other late-diagnosed folks, the more I hear the same story repeated back to me by so many women and AFABs [people assigned female at birth]: Autism is critically underdiagnosed in female and minority populations, and we are being failed by the medical community at large, forced into diagnoses that explain some but not all of our issues. And more often than not, we find ourselves masking and forcing ourselves into decades of uncomfortable situations, which leads to burnout that can take years to recover from and overall lowers our quality of life. 

—joyhobbit