A Life-Changing Diagnosis At 37 Years Old

Trying to reinterpret my life after almost four decades through a completely new lens.

Last summer, I met with a psychiatrist for five hours to talk about myself, my experience, and my life, then took some tests and performed some timed logic puzzles. That day will forever be etched in my memory.

My wife and I have struggled a lot recently in our relationship, and in particular, with our communication and our ability to understand each other. It had gotten so bad that, in January of 2023, after I got back from a solo scuba diving trip in Honduras, she had reached a breaking point and told me so.

“Ron, don’t take this the wrong way, but I’ve been reading a lot about relationships and personal styles, and I think you may have autism. I’d like you to get evaluated.”

Well, hmm… this was interesting. I’d never been told anything quite so bluntly before, and I wasn’t exactly sure how to respond.

What should I make of this? I wondered.

My wife thinks I’m autistic?

That was bizarre… but how was I supposed to feel about that?

Should I be hurt? Annoyed? Flattered? Insulted? I had no idea.

I could see that she was being serious and that it was important to her, so I agreed to the request.

I found a psychiatrist in my area and signed up for a Neuropsychological Evaluation to see if there was any merit to her suspicions. While I was at it, I signed up to take an “official” IQ test as well.

It was very expensive: over $2,000. But it would be worth it: I love my wife and I care about my marriage. It was clear that the way I communicate and respond to people—especially her—was causing problems, even after 18 years of being married.

When I booked my evaluation, I was surprised to find out that there was a HUGE waiting list: I’d have to wait for five months before I could be seen. So I submitted the form and made a partial payment.

Then I waited… and waited… and waited…

I first reached out to them in January when I got back from my diving trip, and it took until March to get a reply. When I did get a response, I was put on a list for an evaluation in June.

This meant that I had a lot of time to think about the whole thing.

Autism? I’d heard of autism before, but as far as I knew, I didn’t know any autistic people. Not openly, anyway. Maybe it was a secret thing that people were embarrassed by.

How would I even know? Do autistic people walk around saying, “Hi, I’m Bob, I’m autistic?” I didn’t think so, but I wasn’t sure. That had certainly never happened to me before.

I pondered all of this during the months leading up to my evaluation.

What even is autism? I wondered. What isn’t it?

I looked it up in the dictionary on my MacBook. It says:

autism | ˈôˌtizəm | 

noun

a neurodevelopmental condition of variable severity with lifelong effects that can be recognized from early childhood, chiefly characterized by difficulties with social interaction and communication and by restricted or repetitive patterns of thought and behavior.

Well, this was very interesting. I’ve certainly had difficulties with social interaction over the years, and definitely with communication. But did I have restricted or repetitive patterns of thought and behavior? I wasn’t sure.

Throughout my life, I’ve had a few quirks that I’ve found people find extremely annoying:

• I always watch videos with captions on.

• I wash my hands a lot and wear gloves when eating messy foods.

• I don’t like being in bare feet, and I wear socks and shoes religiously.

• I ask people to repeat themselves because I can’t understand them when they speak softly or very quickly.

• I HATE super cold drinks and don’t like it when people fill my glass with ice.

This has manifested itself in weird ways over the years:

• My childhood babysitter used to make fun of me for washing my hands in such a fastidious fashion and would say, “Are you a doctor? Are you going into surgery?”

• Sometimes, people shout angrily at me when I ask them to repeat themselves. “MAN, YOU NEED A HEARING AID!” one boy screamed at me during a conversation I’ll never forget when I was about 12 years old.

• People almost always forget when I order drinks without ice. Sometimes, they fight me on it. “No ice? What? Why? That’s weird.”

• I whistle on a regular basis and don’t realize I’m doing it, which some people find extremely aggravating.

• I have a collection of my own things, to my wife’s constant annoyance. I have my own vacuum, blender, hand towels, Kleenex, Windex, etc.

But these seemed like basic sensory issues, which a lot of people have. So I wondered about the “social interaction and communication difficulties,” and that seemed to make some sense.

For example, I’ve always been mystified by people who know something to be true but are too afraid to say it.

I remember seeing fat people as a child and wondering: “Why does that person keep eating food? Don’t they know they’re fat? Does somebody need to tell them to stop eating?”

I once told one of my dad’s coworkers who was smoking on the driveway at our house: “Smoking makes your lungs turn black and kills you.” 

I was completely confused as to why he didn’t already know this. Had nobody told him that cigarettes are bad for you? If nobody else would, I was willing to.

I often wonder: why do people care so much about what other people think? Of the world’s greatest mysteries, this puzzles me the most.

Why do some people let other people dictate how they should live their lives? And why do those people usually let the worst people they know have control over them?

For example, why do nice girls care what mean girls think? Why don’t they just stop caring about what mean people think? Why can’t they just ignore them and start caring about what nice people, like their friends and their parents—people who actually love them and care about them—think?

Why do people say things like “sorry” when they really aren’t sorry? Or when they shouldn’t be sorry?

Why do people—women especially—feel this weird social pressure to act a certain way or say certain things just because it’s “expected of them?” And how do they know it’s expected of them, anyway?

Why do some girls put on so much makeup that it makes them ugly? And why don’t their friends, if they really care about them, say: “Hey, that’s way too much makeup. You look like a monster. Tone it down a bit, and you’ll be prettier.”

The one question I’ve asked over the years, more than any other, is: “Why?”

I’ve learned throughout my life that most people seem to never—or rarely—ask that question about anything, ever. And this is very strange.

Many years ago, the first time I heard about the book “Fahrenheit 451,” I immediately asked: “Why is it called that? What does ‘451’ signify? And what does that have to do with censorship and government thought control?”

Yet, when I was talking about this very same book with my wife just a few months ago, I found out that she had also read it as a teenager. But she never once stopped to ask, “Why is it called that?” — she was content to read a book with a title like that without ever wondering what the significance of that very specific number meant.

How is that possible? How do people not go through life questioning everything? What is wrong with everybody? Why do other people just accept things as they are?

Before I went in for my evaluation, I filled out an intake survey with questions about my medical history, food allergies, problems sleeping, etc. When it was all said and done, I submitted 24 pages of notes about myself, my habits, my preferences, and particular moments from childhood that seemed relevant.

There were signs from an early age that I’ve always been different from other people, but that’s to be expected when you grow up as one of nine children in a conservative, homeschooled Mennonite family that wears weird clothes and drives everywhere in a giant van.

Everywhere we went, we stuck out from the crowd. Always. My parents seemed pleased with this: I wasn’t, but what could I do?

I can remember a few specific instances where, in years past, I’ve gotten into weird arguments with people where it seems we can’t understand each other at all even though we’re both speaking English.

There’s often been a communication barrier of sorts, but I couldn’t understand why, or how, or what to do about it.

I recall one argument at church during Sunday School. We were talking about how frequently different churches observe communion (also called “The Lord’s Supper.”) One of the boys (who was always a bully to me) said:

“At my grandma’s church, they have communion every other week.”

This confused me. I’d never heard this figure of speech before. I wanted him to clarify.

• Me: “Every week, other than what?”

• Him: “Huh? What are you talking about?”

• Me: “You said every other week. …every week other than what?”

• Him: “What?”

• Me: “What does that mean? …every week other than what?”

• Him: “Huh? Are you an idiot?”

The look of sheer disdain on his face, I have never forgotten.

I was asking a perfectly reasonable question about a very strange turn of phrase he was using that I couldn’t understand.

Yet he was glaring at me, speechlessly saying with his face screwed into a grimace of disgust: “You have got to be the stupidest person I have ever met in my life.”

I still never figured out what “every other week” meant. But what I learned from this was: “Don’t ask questions—people will make fun of you for it, and they won’t even answer your question.”

Another time during Sunday School, this same thing happened again.

We had a Valentine’s Day party, and the girls in the group were handing out candy hearts. One of them held out a heart that said “TLC” on it. I asked what that meant. I’d never seen that acronym before.

“Oh, it stands for… I can’t remember… it’s right on the tip of my tongue,” she said.

I looked at the letters and ventured a guess. What could “TLC” possibly mean in regard to love and holidays?

“True… love… counts?” I suggested doubtfully.

Once again, queue the face of glaring disgust and the awkward silence as everybody looked at me with contempt. 

Another girl nearly shouted at me: “It means TENDER LOVING CARE.”

Well, sheesh… how was I supposed to know? And why did everybody act like this was so obvious? The girl I initially asked couldn’t tell me what TLC meant because she’d momentarily forgotten an acronym that (apparently) not only stood for a phrase everybody else already knew of but was also the name of a girl band that everybody also knew of.

Everybody, of course, except me.

Why does everybody else except me seem to “know what’s going on” and “what’s expected of them” when nobody ever tells them?

Why does it feel like everybody except me is in a secret club, and they know all kinds of unwritten rules about what to do and say and what not to do and say?

How does everybody “just know” things, and why do they always act like I’m an idiot because I don’t?

Where’s the list of rules I can find and read, for once, so I can finally catch up to everybody else and understand what the heck they all know that I don’t?

And most of all—MOST OF ALL—why do people get so angry at me when I ask questions?

Why did my Grammy tell me, “It isn’t nice to ask a woman’s age,” when I asked her how old she was? She knew what my age was, and I wouldn’t have been offended if she had asked me anyway.

Why did Kim get so offended in the 8th grade when I asked her, “How much do you weigh?” I told her how much I weighed: what is there to be offended about?

Why did Sarah tell me not to talk about “Megan’s ten extra pounds” when it was Megan herself who told me she had ten extra pounds she wanted to lose?

Why did my wife tell me I said the wrong thing when my younger sister was in the back of an ambulance, and my other sister called me and said, “Please just tell me everything is going to be okay?” I told her: “I can’t tell you everything’s going to be okay. That would be a lie because I don’t actually know if that’s true or not.” How else should I have responded? Lie to her?

Why did Lindsey get so offended when I asked her, “Do you stuff your bra?” when we were playing Truth or Dare on the bus ride to Elitch Gardens in Denver? Everybody else was asking inappropriate questions—that’s the whole point of the game. But they were shocked when I asked mine and gasped at my audacity. Was it really so much worse than everybody else who had asked other questions like “How many boys have you kissed?”

Why did the boy in my neighborhood who invited me to play street hockey get mad at me when I accidentally hit him in the stomach with the ball, then told him, “You’re a big boy, you’ll get over it,” when he started yelping in pain? Is that why he never invited me to play roller hockey with him ever again?

Why does everybody not named Ron know that what I say or do isn’t okay? Where and when were they taught this? Who makes the rules? Who decides what’s offensive and what isn’t? And why does everybody act like this is so obvious? Like I should just know better, or that I do know better but I’m doing this on purpose just to annoy people?

Why would I purposely annoy people?

I recently talked to a man with autism who told me: “I feel like a kid in a classroom, and everybody else understands the assignment except me.” That is the single best definition of my experience going through life for as long as I can remember.

So, back to 2023 and my recent evaluation…

Here I was, mulling over these thoughts and memories from childhood and adult life, and I wondered if maybe I do have “difficulties with social interaction and communication” that are more than “normal.” And maybe there was a reason for this.

I went in for my evaluation and spent many hours talking to the psychiatrist. She asked me many questions, and I told her about my thoughts, my fears, my confusion, and my seeming inability to “be normal.” 

She asked me to summarize in one or two sentences: “Why I was there, in her office, and what I wanted from her.”

This was easy. I got right to the point.

“Am I just a stupid idiot? Am I brain-damaged? Why does it feel like there’s a secret code everyone knows about except me? My whole life I’ve felt like a sub-human, defective person because everybody else knows something I don't; they're all reading off a sheet of music that I never got a copy of and they always get angry at me because I can't sing in harmony with them. But when I ask them to explain, they refuse to, and just call me stupid instead. Why?”

Then I took an IQ test. I had to do all kinds of weird things like match certain patterns, guess the next shape in a sequence of objects, and repeat back to her strings of numbers backward without having time to memorize them and without writing anything down. This was all very difficult, but I enjoyed the challenge: it felt good to stretch my brain.

Afterward, I went home. And waited for the results. About a month later, I met with the psychiatrist for the results. And she gave me the news I wasn’t necessarily expecting but also wasn’t not expecting.

“Mr. Stauffer, you have Autism Spectrum Disorder.”

Wow. That’s crazy. It’s hard to describe just how impactful hearing this statement was stated out loud. It was made doubly strange by the fact that I was a well-functioning adult, with a successful business, a wife, and five kids.

I don’t know what you think of when you try to picture someone with autism. I had an image, and wrongly, or rightly, it didn’t look like me.

But here we were: right before my 38th birthday, at the request of my wife, I had now been diagnosed with autism.

Technically, I have “Autism Spectrum Disorder, Level 1” or “ASD 1,” as some people call it. In years past, it was called Asperger’s Syndrome, but it isn’t anymore since it’s now recognized as a “condition on the autism spectrum.”

So, here we were now.

Actually, here we are now.

That was nine months ago, and I’m still processing it all. I intend to do a lot of this processing out loud, writing about it in public, even though my normally very private self would never share something like this out loud.

Recent events in my life, like the suicide of a business associate and the death of my youngest brother, have gotten me to the point where I’m starting to feel like: “You know what? I have something important to say, and I don’t care what people think or how they respond.”

So, what does this all mean for me today, in 2024, as a business owner, a husband, and a father?

I’m not entirely sure.

I’m just taking it all one step at a time, and trying to process and understand what this means in terms of my daily life today, and also what it meant in years past, and how I got to where I am now.

Here are a few thoughts I have in general, though, about being diagnosed with autism as an adult.

#1: The terminology is a bit confusing.

Is it more proper to say, “I have autism?” or “I am autistic?”

This is an exceptionally complicated question, and it’s something I’ve thought about in terms of other disabilities throughout my work as a web accessibility consultant.

• Is a person “blind?” Or does a person “have blindness?”

• Is a person “deaf?” Or does a person “have deafness?”

• Is a person “disabled?” Or does a person “have a disability?”

This is an ongoing conversation that disability advocates have been debating for years, and I have yet to find a final consensus. Sometimes, I hear annoying do-gooders wag their fingers haughtily at people who “say the wrong thing” and try to correct them.

“It’s called ‘having a visual impairment,’” some busybody without that impairment might say.

But guess what? I also know people who are blind. They’re usually not so hung up about this.

One woman I know who is totally blind likes to playfully tease people a bit, while easing their nervous awkwardness when they meet her for the first time.

 “Nice to see you!” she’ll say, then wait for the inevitable pause when people aren’t sure what to say.

“Did a blind person just say ‘nice to see you?’” they wonder. “Was that on purpose? Is it okay for me to laugh at that?”

She’ll even take it further. “You look good,” she says. “Want to go see a movie?”

I find this approach delightful.

I’m considering this same kind of thing for myself now: should I tell people “I have” autism or that “I am autistic?”

I don’t know yet.

I do agree with people who say, “I am not my disability.” That’s fair. But at the same time, half of me wants to say, “Oh, get over yourself. That’s splitting hairs with ridiculously fine distinctions.”

I suppose I could also ask myself: “Am I an American?” Or am I “from America?”

Who cares?! Well, again, maybe I don’t care. Or maybe I do.

I’m not sure yet.

#2: This is a serious diagnosis.

One thing to keep in mind is that autism is a “disorder.” It’s not an attitude. It’s not a preference. It’s not a hormonal imbalance. It’s not a sickness. It’s not a disease. I know that’s confusing.

Autism is a developmental disorder — that means it develops in the womb. If you have it, you’ve had it your entire life, and there is no cure for it. There is no medication for it.

One thing I’ve found annoying since my diagnosis is just how flippantly some people take this. Some people seem to confuse autism with ADHD or other things like that.

I won’t get into this here, but while some people who have autism also have ADHD, people should know that THEY ARE NOT THE SAME THING. I know people with ADHD, and they drive me nuts: they are literally the opposite of me. Autism presents itself in many ways, but “attention deficit” is not one of them.

Another thing I find annoying is that some people will “self-diagnose” themselves with autism. This should be obvious, but you cannot diagnose yourself with a development disorder you’ve had since your brain first formed in utero. It requires a professional opinion from an actual doctor.

In my case, as I mentioned, I spent thousands of dollars to meet with a professional. I took this seriously. I waited months to get seen, did my homework when it came to the intake process and filled out the forms in great detail. I spent half a day in the office with an eminently qualified psychiatrist who specializes in this.

The psychiatrist I chose has:

• a bachelor’s degree in Psychology

• a master’s degree in Clinical Psychology

• a master’s degree in Clinical & Counseling Psychology, and

• a doctorate (Psy.D.) in Clinical Psychology.

Get my point? This woman is an expert. I am not. And people who “do research” online or read a lot of articles are not qualified to make that judgment for themselves or anyone else.

I wouldn’t trust anybody except an expert like that to diagnose me with a life-altering disorder, and I don’t trust anybody else who thinks they can.

I recently thought about joining an online group for people with autism and went to one virtual meeting when I found out it was “open to all people with autism, either diagnosed by a medical professional or self-diagnosed.”

Ugh. I left after one meeting.

This is a serious issue, and I didn’t want to open up in front of a group of people who do not have the same disorder I do, or simply think they do, or are pretending to.

If I had been diagnosed with cancer, I would have no interest in going to a support group with people who “feel” like they have cancer or who “self-diagnosed” themselves with cancer. That’s not real. What I have is real, and I need real help and support.

My advice to people who think they have autism is: don’t pretend to diagnose yourself. Hire a medical professional and do it the right way.

“The Autism Club” is not a cool club to join. It’s not a fun lifestyle choice. It’s a challenging reality that you cannot change about yourself and presents very real obstacles that stand in the way of making relationships.

#3: Being diagnosed with autism changed everything for me… and nothing at all.

Part of my reaction to this discovery was: “This changes everything.”

But another part of my reaction was the opposite: “This changes nothing.”

I’m still the same person I was before I knew this about myself. I’m the same Ron Stauffer I’ve always been, and having an autism diagnosis won’t change that at all.

“So why even go through with it?” one might wonder.

That’s a good question. For me, I’m fine with who I am, and despite the many haters I’ve had in my life, I’ve always been okay with who I am.

My wife and I currently disagree with why I got the evaluation in the first place. I tell her: “I did this for you,” because that’s the truth. She says: “I didn’t want you to do it for me. I wanted you to do it for yourself.”

But that’s just it: I didn’t do it for myself. I wouldn’t have. I did it for her. For us. For my kids. It sounds ridiculously repetitive to say this, but I will keep doing so: I am fine with who I am. I always have been, and always will be.

I’ve gotten a lot of hate, bullying, and criticism over the years, but that’s still not enough to make me want to change who I am.

I can’t, and I won’t. But getting an evaluation and diagnosis will, hopefully, prove to be valuable in that it will give us tools to work with. It will give me ways to understand myself and give my family members ways to understand me. It will give us a vocabulary to work with.

If it helps me live in peace with my wife and kids, it will be worth it.

#4: This time, I am afraid of what people will think.

For someone who (as I’ve stated) really doesn’t care what people think, this is actually something where I am genuinely concerned with what people think.

When I asked my wife “Should I tell people about this?” her first instinct was to go to the same question I did: “What will your clients think? Will people not want to hire you anymore?”

This is my greatest fear.

Will the people who currently hire me and pay me money get weird about this, or want to fire me, or treat me strangely because they think I have a mental illness or something? I don’t know. I am concerned about this (although, reminder: autism is not a mental illness).

When I recently went to a Meetup that is a local support group for adults with autism, one of the group leaders put into words what I’ve feared.

“When I was growing up, we didn’t even know about the word ‘autism.’ People just called me ‘retarded.’”

Ugh. This makes me sick to my stomach.

The awareness of autism has grown over the past few years, to be sure. But not entirely.

I am absolutely afraid that some people who find out I have autism will think, “Oh, he’s just retarded.”

Reminder: autism is not mental retardation. Even if the word “retard” wasn’t offensive (and it is: I certainly don’t want to be called that), it’s literally not true. I took an IQ test and scored very highly. I am not mentally retarded. My brain is very quick and functions just fine.

In fact, when I got my results back, the psychiatrist said: “You are well above average in your overall performance. Quite high. I don’t often see numbers this high.”

But even so, I think some people will hear the term “autism” and think twice before hiring me. I suppose there’s nothing I can do about that, so I’m not going to.

Here I am, world. Accept me, or don’t.

#5: I don’t exactly know how this is going to pan out in the future. It’s too soon to tell.

My wife still struggles greatly with my “emotionally absent” manner, and my having a piece of paper from a doctor to explain why this is only slightly relieved the pressure by giving us a name and an explanation for why I am the way I am, but knowing that I can’t and won’t change is harder to accept.

That’s all I know for now.