I just got diagnosed at age 25
So i went to the doctor for a separate issue a couple months ago and decided I'd ask what the procedure would be to get tested. This wasnt out of nowhere, as id been suspecting for a while now but I find it difficult to make appointments and take initiative like that.
Let's turn back the clock
I grew up in deep Texas following a brief time in upstate New York in small, extremely religious, communities. My early life was punctuated by frequent delayed milestones. My first words were both late and in complete sentences, walking was late, I never did well riding a bicycle and I'm still not great, and my social life was never really on-par with anyone around me. In the first grade my parents were told by my teacher she wanted to hold me back to better develop my social skills. They objected vehemently, both because my marks were excellent and because the teacher was known to be kind of a dick. They believed i would become bored if I had to repeat, and I believe they were correct. They did, however, not take any action whatsoever afterward to look into why I was withdrawn.
As I aged I learned how best to mask my difficulty, but my best was never all that good. I have a distinct memory of my father talking to me very early on and I was just sitting there listening, he got upset at me for not making eye contact. I didnt understand why he was upset, so i just did as he said and stared right at his eyes, breaking eye contact only occasionally to give myself a small break. Then he got very upset at me for just staring at him and not interacting, which confused me even more. Why was he not able to tell i was listening? He eventually told me to nod or shake my head or say something like "yeah", or "okay".
I took this extremely literally and almost continuously alternated between them, which upset him the most, believing i was now not ignoring, but dismissing. Instead of learning how to talk to his son, I was forced to go through trial and error to learn the precise ratio of head nods, "mm hmm"s, and non-constant eye contact. It never came up again but its a constant effort to this day to maintain that ratio consciously.
Fast forward and this all continues into high school. We had to move every 2-3 years so I had never known anyone more than 3 years except my family, EVER. I had nobody to tell me I was a little off, but I could still tell I was at least a little "weird". I thought that was it, just weird. So combine chronic isolation with undiagnosed and unacknowledged autism, I was not vibing and I had no idea why.
One extreme difference moving to high school made was that we left the American South and the extreme religious indoctrination that I had never fully identified with. We moved to the American North-East, and my high school had nearly 1000 people in my graduating class alone. We stopped moving, and i finally made friends.
Things chugged by, I didnt feel nearly as much bullying as I used to, and I even started dating the girl im now married to. But my circle remained small, I had no desire to go do extra stuff together, and I masked a lot of little idiosyncrasies about my brain that I didnt even acknowledge until very recently.
I always did well academically, even more so than my neurotypical brother, so I went to college and got the first Masters degree in any of my family. I wasnt able to keep the friendships I made in high school, I find keeping those relationships very difficult when they arent right in front of me. Still I had my now wife and I didnt feel lonely. I did very well in quarantine and got very good at baking.
It was at the end of college that I began to suspect something was wrong. It became apparent just how much more easily other people made relationships with each other, and i became frustrated with myself, but one thing in particular gave it away.
I was horribly, TERRIBLY clumsy. I can walk and drive just fine, though I got my license late, but throwing? Impossible. Catching? Good luck. My handwriting is like a drunk monkey, I often knock things over, and I grew accustomed to constantly making myself aware of my surroundings, to avoid messing up. Sometimes when im writing my hand will just randomly put down the wrong letter. Im not dyslexic and I can read perfectly fine, but my hands would not do what I told them. I looked back and thought to finally look it up (like my parents should have done a decade or more earlier) and found that it was very strongly associated with ASD. The final straw, fairly recently, was when I went to a coworker's birthday party, and his extremely pushy family basically dragged me to play to corn hole with them. I accidentally threw the hackey-sack onto his porch roof not once, but twice. It was one of the most embarrassing things ive done in recent memory.
I dug into the actual symptoms and saw the threshold for diagnosis, and noticed that it would be faster to list the symptoms i **didn't** have. Rampant hyperfixation, poor working memory but a very good memory for seemingly random things, no social intuition, delayed milestones, sensitivity to strong smells or sounds, strong sense of routine and stress when its disturbed, low social battery. I could go on but I dont want to break out the written list I made. I brought it up with my wife but she didnt seem convinced.
So eventually when I brought myself to making a doctor's appointment for an unrelated breathing issue, I wrote it all down and brought it up during my appointment. After I went on my multiple-minute description of my written list, she paused for a moment and made a referral to a place i could get tested. I asked her what she thought my chances were, and she told me I have a "very strong case", apparently her husband is on the spectrum and she noticed a lot of the same mannerisms from the moment she met me.
Eventually the appointment is over and I start questioning, if she could tell instantly, was everyone else constantly aware and i was too oblivious to notice? I ask my mom and she's blandly supportive to the point of unhelpfulness, and my brother essentially said "no shit dude". My wife still didn't believe me, but if ill be honest most of her family is way deeper in it than I am, and they're not gonna get diagnosed.
I do all the tests and talks, all at age 25, and yesterday I was told by my doctor that the results are "very definitive". I should receive my full report Monday.
My thoughts:
Im relieved I finally have a name for what I've been dealing with my whole damn life
Im kinda upset the people around me (except my parents) didnt bother to tell me.
Im very upset my parents didnt bother to even pay enough attention to my needs that they didnt notice their son had Autism strong enough to be immediately detectable. What could my childhood have been like if I was told about this and had a little more understanding? Would it have made it easier to make friends and understand myself? Probably?
My wife came around to my suspicions before I got diagnosed but I was disappointed she didnt believe me.
All in all, im upset im the one that had to, on my own, notice and look up my symptoms, investigate, ask questions, and get diagnosed. Again, all on my own.
Anyone else have a similar story?
Im just feeling alone with this.