Struggling with a recent diagnosis

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I received a formal diagnosis as an adult about a month ago, and... it's been a lot to process. I think most of it comes from the diagnosis not feeling right. Evaluation found Level 1 Autism and ADD/ADHD, inattentive form.

I just don't feel like my experiences "match" those of other Autistic people. I'm good at understanding metaphorical language, non-verbal communication, I'm the one making jokes, I look at people when they're talking to me and make agreement noises to help encourage them to go on (apparently this was interrupting; I always learned that it was good active listening). Can't tell you what a "special interest" of mine is to save my life (apparently I was speaking about them at length during my evaluation; I can't think of a specific instance. MAYBE about how my partner and I gave all the ducks at our local pond names and backstories, but that was an incidental comment when asked about hobbies). I like having a routine, but sometimes it shifts and I'll adapt. I like being able to work in a distraction-free environment, but I can adapt if there's an interruption (always a little jarring when I'm watching a high drama TV show and a "happy" commercial comes on, but it doesn't take away my enjoyment of the show).

I don't even have the "Autistic traits" of my family members: I don't need to mute the TV because a food commercial has "mmmm" noises in it, like my mom, or panic when someone I've just met tries to bring me into a conversation, like my dad. It wasn't a weight off my chest like so many other people after they've received a diagnosis; it was "oh, I never realized this was a difference."

I've been reading the report my evaluator provided, and it all just seems subjective. "Lack of eye contact"... because it's difficult for me to talk about traumatic experiences related to childhood bullying and I'll generally look away to try and shift the topic? "Rigid postures" ...because I still have the straight posture from ballet (I'm also trying to reconcile "rigid postures" AND "fidgeting"; I always thought they were opposed to each other by nature)? "Minimal engagement with evaluator"... because it was a four hour evaluation, not a social call? "Atypical speech patterns"...and the examples listed were filler words? "Highly technical speech patterns"...I have a background in scientific research and work in an adjacent field, technical speech is part of the job description; you're also the fourth therapist I've spoken to in the past six years, I've picked up some terminology in that time, sorry I'm including it, I thought you liked things like that. Almost all questionnaires all came back as "below Autistic threshold;" met criteria on the CAT-Q, but something like 101 where 100 is the minimum. If the questionnaires didn't show anything, than that means I have no objective measures; no objective measures means it's not a "real diagnosis."

I just feel like there's no way to win; I'm obviously not able to fit in with neurotypical people, but it doesn't seem like Autistic people will be much better. The resources my therapist has been suggesting to me all feel condescending; I've managed to make small talk and express my emotions appropriately in public for the past 30-or-so years, +/- being a young child who just doesn't know what to do with "big emotions." I don't know if I'm trying to rationalize everything to cope with my own internal biases, I don't know if even my second opinion was wrong, I don't know if I'm putting too much weight on everything and I should just sit back, trust the professionals, and accept everything. I'm talking with my therapist about everything, but I don't want my friends treating me differently because "oh god you have AUTISM now!" I know there's nothing "wrong" with me and nothing "needs to be fixed," but being confused isn't "neurodiversity affirming" so it's been difficult to even find support online.

Mostly just needed everything off my chest; maybe this gets deleted, maybe it gets responses. I don't know. I don't know anything anymore.

Welcome to WP!

Autistic people are welcome here; suspected-Autistic people are welcome here; not-Autistic people are welcome here; and so are confused people.

We might not be able to resolve your confusion but we can welcome you, nonetheless!

Welcome to WP!

As an autistic mother who raised two children, one also ND and one NT, I would offer the thought that growing up with one or both parents being autistic can affect how you see yourself, and how you interact with others outside of your family. You think of yourself as normal, or at least not as affected, because you've been surrounded by it your whole life. And as we always say: if you've met one autistic person, you've met ONE autistic person. So your manifestations aren't like your parents'....yeah, same with my daughter.

You are you. Knowing yourself is important. But also, knowing that you might have a tendency toward various co-morbid medical conditions is also important. So, be yourself, but know that there might be some challenges. Forewarned is forearmed.

Women often fail to get properly diagnosed because it is easier for females to mask or appear normal than males.
But, it can take a lot out of you to do that. Social encounters can be exhausting for those on the spectrum.

A common mistake is to over-compensate for your weaknesses.
Many can't hold a job for a long time. It isn't because they can't do the work.
What happens is they do too much, raising the bar for everyone else!
The lack the social skills to realize that this is a serious problem.
Ever watch those "survivor" reality games. If you are way too successful they vote you out!
If you work too hard your co-workers find a way to get rid of you!

Take twenty older simpler computers such as Commodore 64's and have every one complete with printers, disc drives, monitors etc. Lets use them to symbolize autism.
Autism is brain connections which do not connect, so we get twenty random people who know nothing about electronics and tell them to open the computers up and cut just one elctrical track from the computer each one has opened up.(Leave them decide which electrical track to cut).
We ask those people to put the computers back together again.

Now we get twenty new people who know how to use these computers, and we give them all the same computer program to run that has been stored on floppy discs, and give them a disc each and tell them to select a computer each, run the discs and the programs are designed to give both a visual display on the screen and one asks them to give a printout via the printer.

Now all 20 people select a computer each and go to turn them on.

Six computers don't even turn on! (These resemble those who don't survive at birth).
The rest turn on but four display screen faults so one can't even get to see the program evsn if it loads up. (These represent the blind since birth who have everything vision wize in place, but their brain connections do not work visually due to autism).
Two do not load up their discs (Representing those who have their physical bodies functioning but they are unable to think for themselves).
Three load up the programs, but when one goes to type, hardly any letters on their keyboards work. (This represents those who are unable to speak).
Another three go so far on their programs before they start printing out full on seemingly random colours without ceasing and the screen display does the same with the sonud full on.. (Represents those who have a meltdown).
One seems to do everything right, but when one typed letters D and A they type P and K instead. (This represents those who seem to be normal average people but somehow react differently and don't fit in!)
Still the last one runs fine until it is asked to print something and it shuts down and the computers switch themselves off! (This represents a shutdown).

Now I have just made these senarios up just to give a rough idea that we may not of ourselves see where we are effected by autism. It can be for some, others looking in that knkw what to look for that we may not realize anything wrong.


I am not explaining this well, but I hope it may give one an idea of what can happen... That every person on the autism spectrum is different from the next. Some can share the same traits. Of course. But generally everyone is different.

I am in a similar boat though I think, except I think I'm a bit less confused than you are. Didn't show up as autistic on any test except the CatQ. The diagnosis was pretty categorical but I'm still digesting it.

I'm honestly still confused so I'm going to meet up with other people on the spectrum and see if I learn anything. There are usually local groups in most places I think (I imagine it's easier around big cities).

I'm not sure if I can be useful except to share my experience and maybe you won't feel so alone, or you'll notice some things that might be similar to your experience.

My family aren't on the spectrum but have some traits (mostly sensitivity to sound, which I don't have). This is kind of common in families of autistic people from what I hear, but to be diagnosed you need enough of "the whole picture". I've seen nephews/nieces line up toys, throw tantrums past the normal age where they seemed to lose the ability to speak all but one or two words, not respond when talked to, have very well defined, very strong interests (which is mostly encouraged in my family) and my parents took communication classes as adults to better interact socially, etc. But overall most don't have enough issues to be diagnosed and are quite typical people who don't have social disabilities or rigid patterns of behavior. For clarity the traits I listed aren't all from the same person and are from my point of view, and I'm not a professional.

It's super confusing because it's a spectrum so other people are affected differently. Being ADD (ADHD without the H) means it can manifest differently. For instance while I have several strong interests over my life, it's not the lifelong fascination some people seem to have. There's a few similarities (slower video games, sci-fi/fantasy, various interests around critical thinking). Because I'm gifted, I'm also better able to work around my problems or mask. This might also be your case thought typically they test for that as well (anxiety can hide it however from what I hear). And then I see examples like my friend that just seemed normal to me (but he's been diagnosed after his kid was). And then most of what I hear from people on social media will have a few things that make me go "this sounds way more intense than anything I've experienced".

I'm also seeing more symptoms over time, that I didn't necessarily understand before could be autistic. Like processing delays when spoken too, or to really understand social situations. And "running out of words" mid-sentence even though I know the idea I want to put in words. And others I've been hiding from myself to essentially facilitate masking. Like stop thinking about behaviors that I do "well enough". Or not being exposed to new people much. Dealing with people in a task-oriented manner at most times (which lets me make those people more familiars. My social issues go down significantly when people are familiar). I'm not sure if that's a symptom, but I think it would make sense. When what I'm trying to do justifies how I'm interacting with people so I have to second guess myself a lot less than if I was just trying to socialize with unfamiliar people.

I also arranged my life to not have to see my symptoms too much. A lot of staying at home doing my own thing. Hanging out with mostly neurodiverse friends (though not necessarily autistic and frankly, only one is actually diagnosed). Mixed in with some controlled forays to try to develop social skills.

It's still very confusing what is a symptom or just a quirk or even normal. It's also very annoying to me that all those questionnaires don't include metrics to at least some extent (the sound of a motorcycle?!? At what range? Next to the bus I'm on, it's pretty bad, on the other side of the road, already a lot less bad). The sound of a balloon can potentially damage your ears regardless of whether you are autistic or not. So range matters. Etc.

Thanks all. I think this entire rant or whatever was a meltdown. I think everything has just been a lot, and I want everything to be a lot more straightforward with less shades of grey than it actually is. Gotta love when you think you're done learning about yourself and then the script changes... in the middle of the show, when you've already learned one version.

A voyage of diselfery. (Discovery about oneself).

Awesome_Centurion, like pugmom2013, are welcome here. I hope you both find it a comfortable place to frequent.

I was 64, nearly 65, when I learned I was on the Spectrum. Since I'd been on the Spectrum my whole life before that, even though I didn't know it, I can't say the new knowledge harmed me. It did benefit me, however. First, when my bride bumps up against one of my Autism traits I can now say:

I have a doctor's note for that!
And I found Wrong Planet!

Hi!

I read your post a few days ago and it's kind of got stuck in my head.

I'm Swedish, so I'm gonna try my best English:
I was diagnosed by bipolar II about 12 years ago and I have eaten medicine for it since.

But I have always questioned the diagnose as I don't feel I have had the manic episodes where I lose control, only the depressions. After studying the diagnosis and several other ”disorders” I more and more feel that I have some autistic traits.

So a few months ago, I contacted psychiatrist and now the evaluation is final. I am autistic and not bipolar.

The depressions come from exhaustion of masking and with trying to be ”normal”.

I'm highly functioning and most people could not tell, as I am exceptionally good at ”acting” normally.

I run my business and it's going well, I can be outgoing, stand on stage and talk to several hundred people - no problem. Speaking to neighbours at the same time out on the street I find very exhausting and difficult.

So - maybe you're right. Maybe you're not autistic.

My experience is that if you give the psychiatrist a hint, it's likely to find evidence for your suspicion.

(Also - how many people don't actually show autistic traits?)

Anyhow, I was right in the end. It may be due to my ability and tendency to question almost everything, always.

Welcome to WP