Late Life Autism Diagnosis: Relief and Anger
Struggling to fit in socially gets worse in retirement
I’ve always known I think very differently, but I chalked it up to being “gifted.”
I always felt giftedness like a double-edged and heavy sword, but I was told I wasn’t trying hard enough.
We women are often told we aren’t trying hard enough.
Autism, now described as “autism spectrum disorder” (ASD) is massively underdiagnosed in girls and women. The ratio of boys to girls with ASD was officially 4:1. It’s been recently revised to 2:1.
I believe it’s much more likely half and half because women are experts at social masking and medicine doesn’t see us.
This ASD (autism spectrum disorder) thinking style focuses on analysis and finding errors, especially in spatial or language realms, while sacrificing non-verbal communication.
We don’t read body language well and don’t use or pick up on non-verbal cues naturally, but we see and feel (and endlessly analyze) our own social mistakes.
My lack of social savvy has been a source of extreme despair and frustration over the years. I experienced a big gap in how I communicate with words (writing) and in real life (my body, my tone, my pitch).
Whenever I made people laugh, I got a taste of human connection. Of course, I wanted more — so I became a performer.
Sometimes it feels like I only exist as a mascot, a child, or an actress, but I’ve rarely gotten the social feedback I needed: trust, reciprocity, warmth, and connection.
When I’m trying to learn something new, I look overly serious or intense. This is off-putting to others, but I’m continually trying to learn new things because I can’t shake the belief that maybe I’ll “crack the code” and get it right, one of these days.
That is the autistic style, to amass facts, then stitch them together to understand the big picture.
I’m always thinking, thinking, thinking — because if I stop, I’ll fall off the balance beam.
I’ve been chronically rejected by my peers but in denial about it because of the pain.
My go-to: “Well, life is just hard.”
ASD fully illuminates my lifelong struggle with intermittent depression, which is the result of social failure, loneliness, and being constantly misunderstood. The harder I try to communicate, the more confused others become.
The harder I try to succeed, the more it backfires.
Unfortunately, a lot of what I am reading online bolsters the narrative that autism is a social defect, not a separate thinking style for millions of people.
The current prevalence ranges from 1% to nearly 5%. ASD is much more common in boys and Asians, which makes it pretty obvious there is a significant social construct at play.
I’ve only managed to get through life so far because I’m highly intelligent in other ways, was born white, and married someone who likes me against all odds.
I have suffered significant bouts of depression and anxiety. For the majority of untreated ASD individuals, depression and anxiety are natural responses to social and workplace rejection, along with fatigue due to the mental toil of trying to speak a second language.
The Unpalatable Diagnosis
Society does not like people who are autistic, which is one reason for the massive success of the HSP (highly sensitive person) trait, and the book, “The Highly Sensitive Person,” which has sold half a million copies in its 25th Anniversary Edition.
The original sold over a million copies. The tagline is “How to survive and thrive as a highly sensitive person.”
It doesn’t quite deliver, but I’m grateful for the book because after plowing through the entire Self-Help section of the library, I found my first real clue.
When I learned I was HSP, I felt a little better. I had a trait shared with 15% to 20% of the population!
Great! Why do I still feel so alone?
The trait is found across at least 100 species!
Yep, still feeling isolated AF.
The problem is, I still can’t communicate in real-time. I am often misunderstood, sometimes to the point where people believe I am lying.
Meanwhile, I’m sprinting on a never-ending treadmill of conscientious, rule-following, perfectionistic, good-girl acrobatics.
I have three ways of communicating normally and effectively:
- Using humor
- In writing
- Scripted — as in a talk, speech, or reading a story
In informal settings, I have to pull all my energetic and intellectual resources together to make small talk. It’s exhausting, and I still fail to connect with people and form friendships. This is despite being raised by a diplomat father who drilled me in how to be more sociable.
I’m wary of my peers, and it doesn’t get better with age. In many respects, retirement is a lot like adolescence: big hormonal changes, plenty of free time, space to pursue individual interests, and more time to socialize.
‘Just Be Yourself’
I am caught in a perpetual triple bind.
If I act like myself, I am socially rejected, so I put on a mask, then I’m exhausted.
If I go back and forth, which seems like a good compromise, I’m not believed. I’m either too earnest or too sarcastic, always at the wrong time.
I want to be myself, but from an early age, I’ve known that people don’t like me (and sometimes actively hate me) for what they see as a willful refusal to follow unwritten social rules.
I literally cannot comprehend or see social rules. I have a terrible time grasping how social reciprocity works, and speaking in groups is an exercise in fruitless babbling.
I think I sound coherent; what comes out is closer to the sound of a squealing guinea pig.
Despite a lifetime of work and school, I am still blind to informal hierarchies and treat everyone as if they were all equal.
Pissing off people with power would be a gift if it ever paid off. [Sarcasm: it doesn’t].
Finally — An Answer to a Lifetime of Depression
I’m depressed because I’m always on the outside, always working hard while perceived as being lazy and lonely.
The loneliness is despite the fact that people seem to like me at first. They quickly figure out I’m not who I pretend to be. Then, they feel disappointed and betrayed.
I can never deliver on the initial promise of social aptitude.
I can make small talk like a pro, but I can’t keep it up. I want a genuine connection, but most people want me to keep faking it.
They tolerate and often trust me, but rarely like me.
Being lonely, frustrated, and angry despite constant work and high levels of conscientiousness is depressing. That not’s because I’m ASD — it would be depressing for anyone.
Depression among autistic people is often worse for adults than adolescents because desperately wanting friends and failing to make them becomes more discouraging with age. Isolation becomes more common with age.
Going Forward
I plan to be myself to the best of my ability, with the express intent of not trying so damn hard.
I will learn to never overexplain unless I am talking to someone else who is neurodiverse. I will not ask lots of questions, so I can grasp the topic.
All the times in life when I’ve collided with “Major Depression” have been either autistic burnout or depression caused by deciding I would “try harder.”
Fuck that.
I’m going to focus on maintaining social contact as best I can through activities that provide structure, rules, and a safe community like games, sports, and seeking out supportive groups run by and for autistic adults.
That’s my only hope. I’m tired of trying to be ‘normal’ and failing.
I’m not highly sensitive. I’m ASD or Asperger’s or autistic or whatever you want to call it, and I quite certain hundreds of thousands of women my age also never got the right diagnosis.
I have a feeling a lot of depression, anxiety, and bipolar disorder can be chalked up to neurodiversity. Why are the rates of those illnesses so much higher in women?
I have hope for the future — especially for women and minorities — now that the HSP can of worms has been opened.
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Jean Campbell is based in Hot Springs, Arkansas. She has been writing on Medium for years and recently published her first novel, Down and Out on the Road South, with Wings ePress.