I’ve been diagnosed!

[leehart]

I’ve been lurking here on and off for four years, asking questions and reading things, I recently decided to go ahead for assessment and last month I was diagnosed as autistic! Still processing it and slowly getting my head around things. How did folks here react to their diagnosis, what did you do the first few months afterward?

 

[Judge]

I've seen enough folks like yourself to come through here who suspect they are on the spectrum, who go on to verify it through a formal medical diagnosis. Stands to reason, much like one knowing they are LBGTQ+, etc.. You just know. Though it helps to spend time here to interact with your own kind. Giving a person some real perspective about being autistic.

I've never sought a formal diagnosis, but then I have no real need to validate what I already know. However the process of coming to grips with being autistic was a bumpy ride for me, with so much denial at first. Some 12 years later, I'm fine being who and what I am. Hope you will be as well.

 

[Neonatal RRT]

I’ve been lurking here on and off for four years, asking questions and reading things, I recently decided to go ahead for assessment and last month I was diagnosed as autistic! Still processing it and slowly getting my head around things. How did folks here react to their diagnosis, what did you do the first few months afterward?

I took a deep dive into the literature of "all things autism", mostly from a genetic, neuroanatomy, and physiological perspective. Basically the "medical model" of autism. There's so much information on the behavioral aspects, traits, etc. that may be used to identify someone with autism, but these are secondary to the anatomy and physiology. I wanted to find out everything I could about the core reasons for it, what makes an autistic brain different, etc.

Beyond that, there has to be a period of acceptance. For myself, it is a sense of relief to finally have an answer to why my life turned out the way it did. Retrospectively, there must have been some reason why I "should have, would have, or could have", but didn't. We all go through our lives being judged by neurotypical standards, and sometimes feeling like a failure. When I found out I was not neurotypical, but autistic, a lot of emotional baggage was lifted off.

 

[tazz]

How did folks here react to their diagnosis, what did you do the first few months afterward?

Relief. Understanding. Going a bit easier on myself instead of berating myself all the time. Lots of research. Reaching out for specialist help from local healthcare services and autism support groups. Followed by some significant changes in my work and home arrangements - to help avoid the things that were causing me distress and give me some space to work on my depression.

There were a few moments when I wondered whether my life would have been better if I'd known years earlier (I was diagnosed this year at age 50ish). A little bit of anger that the world doesn't seem to make any accommodation for my needs.

But... on the whole, getting diagnosed was good.

10 months later I'm still in the process of completing the changes and things are going ok so far.

 

[chincey_james]

I was diagnosed in May, but I pretty much repressed the implications of it until just recently. To my partner, it was immediately the biggest relief ever. He said he suddenly realized the things I did that annoyed him weren't malicious, they were just aspects of my autism.

Now that I'm accepting the reality of my being autistic, the biggest shift is that I am much better at protecting myself from overstimulation and burnout. I am trying to reduce the intensity of the masking I do in public. For example, a photo was recently taken of me at a public event. Instead of forcing an artificial smile, I merely relaxed my face and let my eyes show my positive mood. Odd example, but it helped.

 

[leehart]

However the process of coming to grips with being autistic was bumpy ride for me, with so much denial at first. Some 12 years later, I'm fine being who and what I am. Hope you will be as well.

I think it’s a bit bumpy for me at the moment too, still trying to process things and work out who to tell etc. glad you are more sure of yourself now, I am going on a post dx course soon, I hope that helps me some.

 

[leehart]

I took a deep dive into the literature of "all things autism", mostly from a genetic, neuroanatomy, and physiological perspective. Basically the "medical model" of autism. There's so much information on the behavioral aspects, traits, etc. that may be used to identify someone with autism, but these are secondary to the anatomy and physiology. I wanted to find out everything I could about the core reasons for it, what makes an autistic brain different, etc.

Haha yeah doing this - have been for a while reading etc, recently I’ve been obsessing about if different neurotypes are potentially linked to the early human subtypes which homosapians erased by breeding with them. No idea if it has any legitimacy or how such a thing could ever be proven but it is fascinating.

 

[leehart]

Going a bit easier on myself instead of berating myself all the time

This I hope to do, i dont cut myself any slack and know I have so much internal ableism. Changing that is going to be work! its great your doing that!

 

[leehart]

Now that I'm accepting the reality of my being autistic, the biggest shift is that I am much better at protecting myself from overstimulation and burnout

im trying to look at this and make wee changes that can help me. The issue I have is that I need to learn more about what actually helps me - I’ve masked so deeply im not really aware of who I am. I know I’m always close to burn out and it doesn’t take much to make me spiral to very dark places, I’m trying to find ways to boost that some.

 

[Dagan]

A lot of second-guessing practically every choice made, things said, questioning what were mistakes or being mistaken, etc. It was almost like the five stages of grief processing it...for me. You will have a lot of "what if" moments, but you have to eventually just accept you have been on a path that you perceived as correct for you (and not saying that it hasn't been - just saying that you will question much of it probably), and if anything needs remedy, revision, correction or such...then you have knowledge for your better path here on.

 

[chincey_james]

im trying to look at this and make wee changes that can help me. The issue I have is that I need to learn more about what actually helps me - I’ve masked so deeply im not really aware of who I am. I know I’m always close to burn out and it doesn’t take much to make me spiral to very dark places, I’m trying to find ways to boost that some.

I've been saying this a lot lately. I don't know who I am. I know who I am when I'm alone or with my partner. But when I leave my home, I wonder how much of me is an actor and how much is the real person. It's complicated and not at at all black and white (much to my dismay).

As for avoiding burnout, I'm constantly looking for strategies too. This forum is an excellent resource.

 

[leehart]

I've been saying this a lot lately. I don't know who I am. I know who I am when I'm alone or with my partner. But when I leave my home, I wonder how much of me is an actor and how much is the real person. It's complicated and not at at all black and white (much to my dismay).

As for avoiding burnout, I'm constantly looking for strategies too. This forum is an excellent resource.

Yeah that’s one of the things that got me looking into autism for me - realising I didn’t know who ‘I’ was. I really don’t know how to unpick all that lol but I had a free coaching session the other day and they said write things regarding the 5 senses that feel good - use those things and build in more, it reconnects to the body and begins the process of self identification. I dunno if it works but I’m going to try it!

it might also help with burn out….though I’m always right on that ledge, I don’t think that is unique for autistic people tho. I’m finding music really helps me so I’m trying to use that more, a lot of Bon jovi lol.

 

[VictorR]

Lots of learning through reading books, blogs, and websites. It took me several months before I was comfortable joining my first community (here), and I've since joined several others both virtual and in person.

 

[DaisyRose]

I was very happy to be diagnosed because it helped explain a lot of things that happened in my life. For example, processing difficulties, poor coordination, sensory issues, and more. I always had a hard time at school because of my disability, even though I was not diagnosed with autism until I was an adult. It helped me understand myself and how I was able to get through the hard times.

 

[BobbiSueEllen]

I'm glad you got it carved-in-stone! I hate to hear how much it cost...everyone I know who got diagnosed as an adult said it cost them around $5,000 to get done. And I'm broke so I run with a tentative...

In my intro, I stated my discovery was a very strange, Twilight-Zone-ish occurrence: on December 14, 2018, I was flying from Boise to St. Louis and I ended up in Minneapolis-St. Paul for a 5-hour layover. Arrived in the terminal in my wheelchair, got to the next gate, sat...

...but not for long: within minutes, an older, professional-looking male sat a couple seats over in the near-empty terminal with some college-age-looking young adults in tow, who all sat around on the floor and began a discussion. After several minutes, the older guy initiated contact with some small talk; at first I tried to defer it, be brief...but he had this way of drawing me out. And since I was bored, I decided to talk with him. After some talk, he noted that I was uneasy and asked if everything was okay so I told him I'm not very social. He said he'd seen some interesting qualities and asked if we could talk more...why not? So we talked more...

After some talk, he asked if I was depressed or something...and introduced his credentials as a professor of psychiatry. Just my luck, I thought...but decided to keep on. I told him I have transient depression, including seasonal, plus anxiety/panic disorder. As I talked, it seemed he was analyzing me and I grew a bit leery; he sensed it and assured me everything was okay. Being civil, it continued: he asked if I'd been diagnosed with something else and I replied Bipolar I in 1994. Some thought, more talk...oddly enough, the young troupe which was with him started closing in, listening in. He introduced them as students; they were all leaving for Christmas vacation with their families. He asked if I'd taken any kind of IQ, SAT or other tests; I told him all I'd taken was ASVAB: one category score was 89...the rest were in the 97-, 98- and 99-percentile ranks. This really got his attention and he asked more about it: I told him that Army, Navy and Air Force all showed up at my door to court me into recruiting and that I consulted my recruiter about why this was going on and he told me my ASVAB scores were among the highest in Washington state history...and that I was stunned. The commander of the unit which did my ASVAB projected my IQ at 150. The professor was a bit stunned, too.

He then asked other stuff: hobbies, relationships, school years, work/family/financial issues, others. I answered. The next question was one which struck my awareness: "Is there a history of autism in your family?" Yes: a nephew, a second cousin, other relatives...and I have two granddaughters with autism (one slight, the other marked impairment). And then more Q&A...

Not long before my next flight was approaching, he told me he believed I was misdiagnosed as Bipolar; instead, the traits he analyzed passively as we talked, plus the other things I told him he strongly believed I had high-functioning autism; the group largely agreed.

What got me was that at first, I thought it was a gag or something but he gave me his card as his and the group's flight was ready to board...and off they went. Within minutes, my flight was called as well. I left the card there and boarded the plane for St. Louis.

All during the visit and the trip back, I thought about it with no real bother, which continued through the Holiday season. It was the first week of January, after the hubbub died down, that it hit full-force. It made sense...and I went online and scoured the internet for clues, information. It just made perfect sense. Everything lined up.

What began after that was an 8-month odyssey of skullfoofery: my past came back in very vivid 3-D, memories would come in tidal surges, like hallucinations. I became very withdrawn, very dour, unapproachable. The more I tried to dodge it, the harder it hit. For years, it felt there was a Shadow-Person in my life, looking at me, into me, from my youngest years to after the diagnosis...always eluding me, staying out of plain view.

Then, one day...it ended. Just like that. Over. Done. And the Shadow-Person revealed itself: autism. It took to my side and has been there ever since, no longer a shadow. We're companions now, wherever we go. But I suspected there was more to it...and after some time ago, I found I was right. And it took a recent Star Trek episode to find out...

The episode was "The Enemy Within", where during a transporter incident Captain Kirk is split into his two halves...two Kirks. Very much looking alike, ever so different in nature. And the two of them observing, struggling cat-and-mouse against one another until the crew fixes the matter after retransporting both Kirks back into one.

It finally occurred to me and I learned a little more: my Companion, the former Shadow-Person, is more than just autism...it's me with autism. I was my own Shadow-Person, curiously, somberly trying to learn about myself from the outside looking in, trying to understand with every new observation, every new day. There, but apart, day after day, into the tens of thousands of days, darting out of my own view lest I be found out.

And so I accepted it. Nothing else fits. The mystery is over. Getting the official nod seems very pricey...and I'm poor, living on Social Security Disability. $5,000, the price others told me their diagnoses cost, is out of my reach. So...I run with what I got.

And add two diagnoses from the '90s into the mix: an abnormal EEG centered in the frontocentral region...and paroxysmal dyskinesia, which I thought were nonepileptic seizures, which manifests itself as ascending paralysis episodes lasting 15-30 minutes. I've had 12 episodes.

In summary, ya just gotta muddle through it, whether you have any form of support or not. And I had none whatsoever. So I held on tight for the ride and managed to get through it and onto a clearer path. So...just gotta live it out now, with one less mystery on my mind. It was a mix of relief and turmoil.

 

[leehart]

In summary, ya just gotta muddle through it, whether you have any form of support or not. And I had none whatsoever. So I held on tight for the ride and managed to get through it and onto a clearer path. So...just gotta live it out now, with one less mystery on my mind. It was a mix of relief and turmoil.

HI I am so glad you have worked this out and that life makes more sense! I think so many of us go through these journeys.

Yeah, getting dx can be so costly, here in the UK in theory you can get it free on the NHS but that requires convincing and fighting with the GP that I could be autistic (I couldnt do that!) then waiting around 2-3 years for an assessment. I decided to go private which thankfully here there was a company - adultautism.ie which is an autistic run assessment agency that is way less (about $1000) I would think, and was able to do that. I will be paying that back for a good while though!

 

[leehart]

I was very happy to be diagnosed because it helped explain a lot of things that happened in my life. For example, processing difficulties, poor coordination, sensory issues, and more. I always had a hard time at school because of my disability, even though I was not diagnosed with autism until I was an adult. It helped me understand myself and how I was able to get through the hard times.

I am slowly getting to that kinda place, I am starting to understand more about my past, the issue is so much of my childhood is repressed memories so I cant remember much really. Its great that the dx has helped you in that way

 

[Suzanne]

Amazed and excited, that at last, something I suspect came to be true. But, then panic set in. No back door. I have ASD level 2 and it began to frighten me. I have no idea why though.

Was formally diagnosed in 2019.

 

[Gift2humanity]

I’ve been lurking here on and off for four years, asking questions and reading things, I recently decided to go ahead for assessment and last month I was diagnosed as autistic! Still processing it and slowly getting my head around things. How did folks here react to their diagnosis, what did you do the first few months afterward?

I was relieved as I'd had failed diagnoses prior. It's thanks to the mental health team that I got reassessed.
I talked about it a lot. I wanted people not to expect of me what they expect of neurotypicals.
I'm only just getting to know how little I understand about autism.
I'm only just getting to know how backwards society still is about autism. We now know it exists but we still associate it with mental illness.