How Has Diagnosis Helped You?

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For those of you who were diagnosed as being on the spectrum in your adult years, how helpful was the diagnosis?
I am finally taking the steps to see if I am on the spectrum. It has been on my mind for years, but I never went through with it because I figure that it wouldn't help me much. I have learned how to disguise certain behavior and can get through life without too much trouble.
What are some behaviors you exhibited that convinced you to get an official diagnosis?
I apologize beforehand if any terminology I used is not the most modern/politically correct term as I am new to this, but I would love to learn the best way to phrase them.

Some past/current behaviors:
- nail, nose, and lip picking (to the point of bleeding)
- This is TMI and absolutely WEIRD, but I will pluck my pubic hair lmao. I'm embarrassed by this, but I'm trying to be open so that I can see whether or not this is "normal" behavior
- I suspect that I have ADHD. I always struggled in school. As an adult, a physician put me on Adderall and it helped me focus tremendously. I am seeking an official diagnosis for this, too.
- I used to pace around a lot. But now that I have my own house to clean, I'm constantly walking around cleaning and I don't really pace anymore.
- I love spinning, like in a computer chair.
- I rock back and forth when standing.
- I have no clue if I exhibited hyperlexia as a child, but I was told that I was always fascinated with books even before I could read. I always did above average in English, but horribly in other studies.
- I have issues with knowing what people want unless they are very direct and to the point. I hate when people can't just say what they want or need.
- Eye contact has always been awkward for me.

This is not an exhaustive list, but it's the more prominent behaviors.

Welcome to Wrong Planet

I was diagnosed almost 10 years ago well into middle age and look at the day I got my diagnosis as my second birthday of sorts. I finally found out who I am. It made me go through my life with this new understanding. For the mistakes I made in my life, it provided a different explanation, it was not that I made them out of weak character, but I was born this way. Being born this way is why Autism is considered a developmental disability. During my life look back I finally figured out that the decisions I made were mistakes and negatively affected my life going forward, not so pleasant. Nowadays it helps me recognize and avoid situations that are not right for me and helped me recognize my strengths. It is not possible to avoid situations that are bad for you. In those situations, it has helped me at times mentally prepare for them, and find coping mechanisms to make them less bad.

In conclusion, it has helped my self-esteem.

Texasmoneyman300 has had a very different reaction. There is no right or wrong way to react to a diagnosis.

As you are in the assessment stage I would advise your goal should not be an autism diagnosis per se but the correct diagnosis.

Good luck, and let us know either way.

It helped me to understand why I was vulnerable to trauma, and allowed me to stop shaming and gaslighting myself.

It was a huge step in PTSD therapy.

Welcome to WP.

I suspected I had inattentive type ADHD as soon as I read about it in 1996. Then I finally got diagnosed in 2011. It's helped me be more accepting of mistakes I've made and be more positive in general. Meds haven't helped so I'm stuck with my crappy brain for life.

Welcome to WP.

I'm ambivalent about getting a formal diagnosis, especially now at my age. For one thing I suspect it would take a considerable amount of time and hassle to get a formal diagnosis in the UK and secondly I'm now comfortable living in my own skin so not sure a diagnosis would be of much benefit. When I lived in France my GP said it was very likely I had Asperger's syndrome; but of course that isn't a formal diagnosis.

I was just diagnosed last year. I had come to a point in my life where I was trying to understand myself and some of my oddities better. There are things like motor tics, tactile over-sensitivity, social cluelessness and other things that I wanted an answer to. Also, the big realization that I have never really felt like I fit in anywhere. I stumbled across the notion that it may be autism and it seemed more and more plausible as I continued to look into it. I'm sure that most of us would agree that imposter syndrome is a very real thing and I wanted to know for sure if I was on the spectrum or not.

Since the diagnosis, I feel like I understand myself better. I understand why I get so deep into my hobbies, why I can focus on something and completely loose track of everything else, why I'm so socially clueless, why my emotions are so different from others (pretty sure I have alexithymia). Also, I can start to understand other comorbidities that I've experienced but have never been officially diagnosed with like the motor tics, sensory issues, OCD, anxiety and depression. The autism diagnosis was the big important one to get. It is the key to accepting why I have so many other issues. Now that I know I have autism, I can easily reason that these other things are just related to the autism and that is good enough for me.

On the social deficiency side, I now have a way to explain to the people that I choose to accept into my life why I'm so different. They will notice my oddities eventually and now they can either accept me as being a bit different from the beginning or go away - I don't much care which because I have no use for anyone who can't accept me as I am. Also, I have noticed that it is easier for me to at least try to go along with invitations for social occasions. When someone invites me along and I feel irritated that my routine will be interrupted, I understand why my routine is so important to me, why I feel that irritation for things that will interrupt my routine and I can at least try to tell that part of my brain to shut up. With the autism diagnosis, I know going into a social situation that I will be socially awkward and may likely fail at the social interaction entirely but at least I know the reason and I don't have to feel bad for failing at this anymore. At least I tried and maybe was able to learn something new for next time.

So far the autism diagnosis has been a positive influence on my life. The best thing is that I understand me better. This feels wonderful.

Officially diagnosed 21

Now 39

Diagnosis disclosure has not had any significant impact on work or school

Socially, only affected a few relationships, but nobody demanded the diagnosis report

Disabled bus pass

Nothing consequential

One way it has helped is that I'm not stressed anymore over failing to appear normal (I don't even try anymore). Also it helped me understand myself better.

My diagnoses of ADHD and autism helped me get the disability pension which I was (and am) grateful for because otherwise I'd be pressured into looking for a certain number of jobs every week and providing proof of that. As it is, I have a small cleaning job that is just enough for me. I'm left alone about it apart from reporting my earnings and that's ok.

If it weren't for my diagnoses, however, I'm pretty sure I wouldn't have co-morbid conditions like depression, schizoid PD, bipolar and motor tic disorder to deal with. I take a lot of medication for these things and at times am frustrated by it.

My inability to communicate normally with the public (people I've never met before) also frustrates me but I know now that there's a reason for it and my diagnoses has certainly helped me there.

Thought I was ASD and could well be, but was found to have have NVLD. It has only explained a few things and given a name to differences I noticed about myself; that is all.

It's been one more medical lens to look at my life through. Occasionally helpful.

I also know a bunch of people locally who have accessed government funding pretty much via having a diagnosis. There's a national disability scheme here which is annoyingly complex and inconsistent, but one of the things they do lay out plainly is that if you have an autism diagnosis L2 or L3, you're pretty much guaranteed a place in the system - it's listed on their "A-list" of conditions, which are near-guarantees. (Whether you can then get access to anything actually useful is debatable, but at least you can get on the books and a foot in the door, a hurdle many people have had trouble clearing.)

Admittedly, that's a fairly narrow circumstance, and only in one country, but it's possible there are similar items in other countries' health/disability systems, or part of private services' classification processes.

It put a lot of things into context and helped check certain paranoid traits, among ways.

Essentially, Stop the World! I want to get off (Also the Title of a Leslie Briscusse Broadway musical from 1961.

Why, you may ask do I want to get off? Because I’ve always been classified as a fool, an idiot, and a jackass, no matter what I try to do to improve myself. The hit song from this show, What kind of fool am I, which eventually became a hit for Sammy Davis, Jr., describes me to a T.

Sadly, music was, and still is, the only means of expression I know. Unfortunately, people don’t give a damn, so just Stop the world, I want to get off!

I don't think there were any specific behaviors that encouraged me to get assessed. Part of what had me so confused for most of my life is that I thought everybody dealt with the exact same issues I did, only everyone else seemed to handle them better whereas I struggled significantly more for some mysterious reason.

My husband suggested I might be on the spectrum and I initially dismissed the idea because I had a fairly ignorant view of what autism "looks like" in people and figured that if I was autistic, it would be obvious and I would've been assessed when I was a child. After learning a little more about ASD and finding out that I have multiple family members who have ID and/or are on the spectrum (particularly on my father's side; unfortunately, I'm not close with that side of the family, so this info was fairly new to me), I took the idea of getting assessed more seriously but still doubted whether it would be much help as I'm already an adult.

I'm really glad I decided to get assessed anyway. I was diagnosed with ASD (Level 1) and when I told my family, every reaction was some variation of, "Oh, that makes sense!" Social relationships with my family are so much easier: I don't feel as pressured to get every interaction "right" or to engage in every activity I'm invited to. I also notice my flatter affect and tendency to be more quiet are taken less personally now, too. But best of all, there's a lot more direct communication, and I feel more comfortable asking questions when someone says or does something that seems confusing to me. Overall, I feel closer to my family, especially my parents. (This benefit doesn't extend outside my immediate family, though. In general, I prefer not to tell people I'm autistic.)

I'm also glad I got assessed/diagnosed because now I can piggyback off of the experience of others like me in regard to social and sensory issues. I've bought myself a nice pair of reusable earplugs, for example, now that I know I'm hypersensitive to sound and that reusable earplugs are a thing that exist. In the past, I would've just told myself to suck it up and deal with the pain/confusion "like everyone else." I'm more kind to myself about my limitations these days now that I know they're not a personal failing.

I want to add that getting diagnosed was not all positive; I've definitely experienced sadness and anger about it, too. But overall, I'm very glad to finally understand that I'm not a worse version of everyone else, just disabled, and now I can begin to accommodate for that.

I'm actively pursuing a re-evaluation because the previous one was kind of a mix. The official result was inconclusive due to other conditions that I had been diagnosed for. But, the way the woman doing the evaluation was talking to me, it was pretty clear that she thought that there was a very high likelihood that I was AS, but there wasn't enough evidence to dictate that she ignore the diagnoses that had already been placed in my file by doctors that had worked with me for longer. She started out asking very genuine questions about why I thought different things and what my experience was, doing various diagnostic tests. But, by the end, she was very direct and a lot of eye contact in a way that I now realize would be professional and appropriate if you've got somebody that you think is autistic and have just one chance to communicate the information without it being in a written record.

Whether a formal diagnosis is necessary or helpful is really going to depend. I don't know what the full result will be when I get it, but I do know that it can't possibly be worse than when I had that schizoaffective disorder listed on my medical record. I could just see how they'd look at me and start talking, but the moment they saw that I was possibly psychotic, they pretty much stopped listening entirely.

Most of the benefits are going to come in terms of it being harder to discount our lived experience and having a somewhat firmer ability to ask for accommodations at work as necessary. Most of the rest is about what we do for ourselves. Even without the formal diagnosis, I just spend my entire breaks stimming with one of those calming jars and F anybody that has a problem with it. I'm certainly feeling better now.

Ultimately, like anything else, it's going to depend a bit on the people around you and what you choose to do with it. You can still have an F-ed life and be slightly outside the spectrum, and have a wonderful life and be slightly inside. Being inside or outside doesn't necessarily say anything useful about the degree to which your autistic traits are impacting your life. And if you're as masked as I am, you might not even notice apart from being drained most of the time.