Is this diagnosis story like yours?

Post Reply New Topic

Hi, everyone! For decades I've wondered if I maybe had autism (dad & grandpa clearly were with all the stereotypical stuff like hand flapping, inability to engage in 2-way conversation, etc.)...and I have my oddities. (Please note that I did not yet understand that autistic people experience empathy, can certainly engage in normal conversations, and don't all do "hand stuff," etc.)

So about 3-4 years ago I called around my city to see if I could get screened somehow. That's when I learned the wait could be TWO years here to get seen & get results and it would cost thousands (at least 3k).

But I found a counselor/psychologist (licensed and specializing in autism services) who said, "Let's talk." So I went to see him. He said everyone seems to be wondering if they're autistic now, but he does not take diagnosis lightly and not to expect him to say he thinks I have autism just because I may think so or if I took an online test, which I didn't. (That sounds harsh, but he was really gentle about it.)

I told him great, I don't think I am anyway. I figured my empathy automatically ruled it out, but it still weighed on me.

So after 20+ years of wondering, I finally talked to a therapist to put it to rest once & for all.

At the end of the session he said, "Well, I have a conclusion. Would you like to hear it?" I figured he'd say I don't have autism, have a nice day.

I was stunned when he said that to him I present a very clear case of "level 1 autism with hyper empathy tendencies."

He told me sure, I could go on for formal, medical diagnosis. But he explained that it would yield the same results--yet put me thousands in debt, offer no particular services because I run my own successful (very small) business, own a house, do not appear to be "at risk," etc., and the real kicker--my state requires all formal medical diagnoses to be registered in a state database and that my state is particularly aggressive about disclosure.

He said it's up to me ultimately, but unless I want to apply for services, need workplace accommodations, or really need that documentation for personal reasons, he explained that his diagnosis is based on decades of experience and various credentials. He said he's 100% certain of his conclusion, but of course it's up to me to decide how/if I want to proceed.

I decided not to do the formal, medical diagnosis.

Then I spent the next 3-4 years not wanting to face what he told me and figured maybe I'm just weird. lol

But something happened in the last 2 weeks and I can't run from it anymore.

I am very active in the community doing music. I've seen plenty of pics & videos of me performing. But for some reason, in all the years I've worked, no one's sent me videos of times I was not quite presenting/performing but just milling about. I've only ever seen me performing when my hands are playing or holding a mic.

And because I was just involved in some large-scale community events, I was sent lots of videos from folks (figuring I'd want to see because I was tagged on social media).

These videos showed me before and after the music when my hands weren't playing...when I was just hanging out, packing up, zipping my coat, nothing major.

I was mortified. The hands said it all. The posture. The mannerisms. I won't go into detail because I know not all autistic people have the same mannerisms and I don't want to sound like I'm stereotyping. However, there are just some things...and when you see them, you know. It was noticeable in every, single movement and even non-movement.

I don't take video of myself in public when I perform. I don't need to see it; I'm right there! And to protect privacy, I simply don't take footage of me or the audience when I perform (I often play for vulnerable populations, so I just don't film).

So after seeing these long clips, I started being more mindful of my general mannerism, my conversation style, everything. And omg. It's not just habitual movements or learned gestures. It's...everything.

I'm a huge mix of mortified, embarrassed, relieved, proud, panicked, more at peace, and even wanting to make something good of all of this.

I've suffered a long time with the stuff you're all familiar with, too. I'm in my very late 50s. As I process all of this, I am driven to work to try to heal from a lot of pain by doing things I should've known about/been doing for decades.

If only the services that exist now existed when I was a kid...

I used to hide in school because I couldn't handle the people, noise, lights, commotion. They finally approved a plan for me to do 2 days at home. Home school in my state didn't exist then, but that's how bad it was. There was much, much more. Yet services and diagnostic screening didn't exist for kids testing above grade level and who weren't aggressive, etc.

So I'm playing catch-up.

It's pretty f'n scary, actually.

Anyway, feel free to say hi or something. I'm fine but this is pretty intense right now!

BTW, my screen name has no affiliation with anyone else who may use that name in music. I do not use it online anywhere and not for my work in music; it's an affectionate name some folks call me because I like rain and being outside lol.

Welcome to Wrong Planet Jane

It is very common when people realize they are autistic to have strong sometimes contradictory emotions. Since you spent decades under the assumption you are not or probably not autistic you it will take time to catch up.

The natural tendency is to suppress these emotions because you have been doing it all your life. My advice is to not fight these and let your autistic brain do what it needs to do.

As the therapist said the ultimate decision to seek or not seek a formal diagnosis is up to you. You were given perfectly valid reasons not to do it. I would add this consideration. You have been successful in life. There are no guarantees in life. It might be better to do it now then later when you are in crises and your financial situation is poorer. That your school allowed you to stay home in an era when almost no schools were doing that should be strong evidence to an assessor that you are autistic, that you are not just another person wondering if they are autistic. That your dad and grandfather had autistic traits is further evidence.

Those of us older adults who muddled through most of our lives not knowing we are autistic are survivors.

Thank you so much for your thoughtful reply...very helpful!

I think part of it for me was that underneath it all, I figured/knew I was autistic but didn't understand that I could feel empathy and emotions deeply, that I could connect with people (at least on some level)...and still be autistic.

You've got me thinking--it's true that as a young child, I could've benefitted from help and adaptations if they'd been available for kids like me.

And then later, when it was clear that although I'd been tested repeatedly and found to have high intelligence (like many of you!), I found that the regular, adult world was one that I could not navigate, especially workplace environments...too loud, busy, full of interpersonal stuff I was supposed to navigate, etc....so I started my own small business out of my home so I could still make some money/survive but in ways that I could handle.

And like many of you, at first when people meet me, I seem like a regular person. I may even seem kinda cool...I'm respected and recognized in the community etc etc.. When I'm doing my work in the community, I'm smiley, warm, personable, etc. It comes from an authentic place, but it's all performative in terms of my presentation.

but then if you spend time with me, you'll see that although I'm not weird in a creepy/bad way at all, but I'm found to be...unusual at best and mostly just "weird."

Like...if I go on a walk in nature or kayaking, I don't want any talking. I want to listen to birds. People don't like that. I don't go kayaking with the group here because for them it's social time. So they think I'm stuck up.

I don't like any kinds of parties or really any social events (although if I must go, I mask well).

I prefer to live with my cat and dog vs. humans.

I don't have kids.

I have intense and socially odd interests for my gender and age, like I track the behavior of certain harmless spiders in my house. I am a weather fanatic and track weather info to make predictions.

My house is not like most people's houses because I don't care about cutesy stuff.

I'm not the usual things that people my gender do or like (but it's not a gender issue). I'm just...me (you get it).

So what you're saying makes sense to me...that considering all of the above (and much more) when I get older (which is happening right now lol), I actually may want an official diagnosis if I do end up wanting or needing help and support.

That gives me a plan.

Without getting political, where I live, the current administration of the country has said and done (and has proposed) some very damaging things about autism and autistic people. There's even a desire to create a national "database" of diagnosed autistic people.

There's NO way right now that I'm going to get diagnosed with this brewing.

But if things improve with the next administration and if those ridiculous and harmful narratives, executive orders, and plans are revoked and/or denounced, I think it would be wise to get the formal diagnosis.

I think it's probably not uncommon for people like me to eventually figure it out and seem like we're doing well.

My dad did that. He was very well-respected through his 40s. He accomplished amazing things in his field and had the world at his feet.

But he couldn't keep up the masking and eventually lost everything with some bad incidents. We all had to pick up and move across the country to a small town where no one had heard of him.

He's just declined since then and now sits alone in his house rejecting all contact and is super odd. It didn't end well for him. If he'd just agreed with his doctor to get formally diagnosed to get help, he could've had a much better life, especially now in old age.

So thank you for listening/reading all of that. I now have a plan, thanks to your kind and thoughtful input.

Welcome to WrongPlanet Jane and thank you for sharing your story with us!

I started feeling "different" when I was about ten. I was not diagnosed as Autistic, however, because the DSM had no diagnosis for me until I was 40. I was just going through life feeling different...and over time I became increasingly convinced that I was not the one who was messed up, it was everyone else who was messed up.

The DSM-4 added Asperger's Syndrome when I was 40...but I was not looking for a diagnosis because I didn't know one might apply to me.

I did reasonably well in life without a diagnosis. It took me awhile to find a bride but I finally found a gal and married her in 2000. I retired comfortably in 2011, when I was 56. And while I felt different I did not know of any medical diagnosis that would've fit me.

One of my sisters works as a nanny for special needs children and in 2018 she had one with her when she visited our then-still-alive Dad. And the reports I got said that several times Dad said the kid was like me! My sister likes that kid so I'd heard of him...his parents suspected he might be Autistic.

I knew virtually nothing about Autism except I'd seen commercials for Rain Man and it didn't seem to match me. But, I had no other explanation and Dad thought that possibly Autistic kid was like me so I started reading about Autism on the Internet. And it sounded like me!. So I got my bride involved and, after reading about Autism, she agreed that it sounded like me.

We were completely unqualified to make any such assessment, and I knew it, but then I discovered AQ and it said I was probably Autistic. Then my bride took AQ on my behalf, answering the questions the way she thought I should answer them...and the result was still that I was probably Autistic.

That convinced me I was very likely Autistic but I wanted to be sure so I hired a psychologist to do an Adult Autism Assessment of me. She made it official! I got my diagnosis. I satisfy the criteria for Autism Spectrum Disorder, Level 1 (Mild), and I also satisfy the criteria previously associated with Asperger's  Syndrome. (By the way, the assessment was kind of fun!)

So, now I know that I am Autistic. And, even though that knowledge doesn't do me any good, I am glad to know.

I was already retired so the knowledge doesn't do me much good but:
1. Now I know what is wrong with everyone else—and that it's not my imagination!
2. Wrong Planet!
3. When my bride bumps up against one of my Autism traits I get to say: I have a Doctor's note for that!

I'm now 71 so I have an increasing number of interactions with medical professionals. I wish telling them about my diagnosis would get them to make some adjustments for my Autism...but no such luck. I find them to be frustrating.

But, welcome to Wrong Planet and I hope you will be comfortable and happy with your autism.

Welcome to Wrong Planet!

Thanks for the replies and the welcome!

Also, thanks for the tip that there's a political forum (when I mentioned that my state requires a database of diagnosed people and my country is floating the idea of a database, too). I didn't want to say any more than that because I wasn't intending to make it political...it was just about my apprehension to go beyond my "clinically identified autism level 1" status.

About my dad and the silent generation--I'm afraid it's far more than that.

He was very well-known & respected in his work until he did something horrible (he was horrible to us at home, but no one knew that).

He was arrested, immediately fired, and became national news. It was a big story regionally because of how respected he had been.

People wrote to the editor in local papers expressing their disgust and disappointment; I remember my mother reading them in a panic.

I was already a flaming little autistic child by then, but my problems were typical for an undiagnosed level 1 kid in the early 70s. Otherwise, I had friends, did well academically, enjoyed my life in general. When this happened, it was utter chaos and I really suffered.

My family was driven out and forced to move thousands of miles away where the general public had not heard of him.

He continued to treat people terribly, including & especially the rest of us in the family. Not saying he didn't try in many ways. But even with him cleaning up his act in some ways, in others he was an abusive nightmare.

He's retired and very old now, but he'd been fired from every job he's ever had. He's a very educated man and had lots of potential.

But after every incident, he steadfastly refused to get help. It can reach a level where he has a meltdown somewhere and people call the ambulance. He's been in the ER I don't know how many times because of this...he collapses, becomes nonverbal, does involuntary repetitive motions, and cannot speak sometimes for hours.

They do all the tests, find nothing, and then his doctor(s) beg him to get a formal diagnosis so at the very least, when these things happen, they can offer additional treatment that is more suitable to what's going on. And they said that his family really needs him to do that (true).

But he refuses. He refuses at the time, the next day, month, or year. He refuses when he's settled down and rational. Year after year, decade after decade, no matter what it does to him or us (I'm most affected because of my proximity and needing to go to the ER or deal with his financial records, etc.).

It's beyond "silent generation" stuff. He's not a nice person and he's very self absorbed. He has never cared how his actions hurt someone--and autism alone doesn't make someone like that, not exclusively anyway!

In his better days, he was charming, articulate, charismatic, and successful in everything he did. But he simply refused to get the help he needed.

Just wanting to clarify that his is not a typical "my dad is just stoic" type of story.

I hadn't been thinking that I "need" a formal diagnosis. That's if you want services or accommodations. I don't. So why spend money I don't have and get put in a database?

But when I think of my father refusing to face things and get help, I don't want to be like him even a tiny bit (when it comes to any sort of denial or refusal to get/accept help if needed). So I'm contemplating looking into Prosper Health some more or some other more affordable telehealth option. In person is not an option.

Thanks for listening/reading! You've all been very helpful.