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What now?

Well I think I might be autistic, I've wondered why I feel so different from other people, why it feels like I am taking my entire life, why when I lose focus, or am not being focused on i become completely silent and struggle to make even simple comments, and why I have had to watch and learn from others to become remotely social. I guess those are all signs of autism. I took that RAADS-R test and got a score of 141, which is slightly above the mean for autistics, I also took a few other of those quizzes.

But my question is what happens now? What do I do? I don't feel comfortable asking my parents if I can get examined, I can't really afford to do it myself, but I guess I could try. I don't want to just start saying that I'm autistic, and have to mention that it's self diagnosed because I think we all know the stigma around that.

Heck I'm still in the stage (or I assume it's a stage because it matches that one post here where they talked about their stages of realizing they have autism, and I related completely to it) where I'm not sure if I am not just faking this whole thing. So what do I do now?

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  • This has turned out to be a huge wall of text, sorry.

    Most autistic communities recognise that an official diagnosis is hard to get and not always helpful/necessary, so while it's wise not to say as much out in the rest of the world, it's completely valid to self-identify within an autistic space.

    Feeling like you're faking the whole thing is so normal. I didn't have a self-identification journey before being diagnosed as an adult, and for the first two years after that diagnosis still felt like I wasn't actually autistic and the assessors made a mistake, or not autistic enough to "count" and give myself accommodation. It comes from a lifetime of learning that your experiences are "wrong", that you "can't trust" your own interpretations of the world around you, that you could do anything a neurotypical person can do if you just try. We late-identified are raised to doubt ourselves. It's often no one's fault, but it still takes a lot of unlearning.

    What you do now is start regularly checking in with your senses. Are you feeling tense because you've been ignoring a too-bright light or an irritating noise or an uncomfortable piece of clothing? Removing those kinds of subconscious distractions is a huge relief, whether that's with headphones, earplugs, sunglasses, baseball hats, whatever works. Are you hungry/thirsty/sitting in a really uncomfortable way and haven't realised it? Solve those needs.

    Then look into stimming. Physical or mental actions that you feel an urge to do and find calming. They don't have to be "weird" or socially unacceptable - spinning a pen, fiddling with a paperclip, chewing gum, twisting bracelets/wristbands/rings, squeezing a stress ball, wearing clothing that puts pressure in certain places (e.g. I wear dresses with a waist belt for pressure on my abdomen) are all possible stims. Even if it sounds completely unnecessary, try a bunch of thing and see what makes you feel safe and calm.

    Chances are that if you're autistic you'll have a lot more mental energy after discovering your sensory sensitivities and stims, because it's not all going into trying to ignore all the discomforts.

    The social side is less straightforward, and to be honest I've not figured it out yet. People say masking is damaging and should be avoided at all costs, but those costs can be significant. I've tried to go the route of not masking stims (having found subtle ones that work) and unapologetically wearing sunglasses indoors, but still put on the mask when it comes to communication, tone of voice, facial expressions and the like. Because my aim is to be understood, not to take a stand for all autism-kind, and the relief of meeting my sensory needs frees up a lot of the mental energy for it. Maybe that's the wrong approach, but it's the one that poses the least risk to my comfort.

    • Thank you, a wall of text is fantastic, it's so weird to see issues and problems I've been having that have felt like they were just something I experience just written out by someone I don't even know yet.

      That first comment on not feeling like your Autistic enough hits home so hard. I've felt that ever since I started wondering if I was autistic. It's definitely not a struggle I'm over but having someone else even mention it is amazing. Thank you.

      And for stimming, I've learned to spin just about any object across my palm, I had no idea that's what I was doing. This whole time I just though I was just fiddling. That's so cool that there's a word for that. Thank you for your wall of text and advice, I guarantee you I'll be competing back to this comment over and over.

      • I'm so glad you're feeling validated, it's so miserable to be adrift in thoughts of "what's wrong with me"!

        Stimming is one of those things that everyone does to an extent, since it's basically just "doing things that feel nice". The difference for neurodivergent folks is that it helps us emotionally regulate in a way that neurotypical folks don't need, so we tend to do it a lot more often (or feel extra stressed/anxious/irritable).

    • Spinning pens is stimming behavior? Your telling me NTs don't do that?

      • Sure they do, NTs do a lot of stim activities, the difference is that they don't need to stim in order to remain calm and centred, they can just do it because it's fun.

      • Is it normal to pull up grass while sitting in a grassy area and just run it through your fingers?

  • The "imposter syndrome" phase is completely expected. Experience tells me that most people that would take the time to make such an assessment of their self and come away with the assumption that they are autistic, and also follow that up with questioning whether or not they're faking it, most likely are autistic. The imposter syndrome is a byproduct of masking. We're so used to having to present an image for others that we still assume we're doing it when we discover our authentic selves because we're so discouraged from just being ourselves that we have difficulty recognizing the authenticity of who we are when we aren't masking.

    Welcome to the community, by the way. This is always a safe place to take the mask off, and nobody here will judge you for your questions or your experiences.

    • Well I am glad to hear that. I know it won't solve my problem but when I'm feeling like I'm faking it, it'll be great to have this comment to remember and grasp on to. Thank you

  • Self-diagnosis is valid. If you feel alright in your current environment, but think that autism might explain some of your experiences, then I would not prioritize getting a real diagnosis.

    Learn about autism and how it affects you specifically. Autism is not just a linear spectrum from "low functioning, infantile autism" to "high functioning, Asperges" as some stereotypical explanations would put it. Learning about autism in general helps, but what matters most is learning what it means to you: What you can do without getting drained, what you shouldn't do, what kind of support that would help you.

    As part of this journey you might realize something your parents does unknowingly to support you (or worse hinder you) or realize why you drifted apart from former friends. Some of this might be hard to accept, other things might be light-bulb moments, where things suddenly makes sense. Take your time.

    At some point a diagnosis might be useful. Either to get the support you need from a bureaucracy or to get acceptance from your surroundings. But as long as you are alright, I would have a specific goal before seeking a diagnosis.

    "If you are alright ...", I've said this twice. If you are experiencing stress (and not just the "I so busy..." kind), depression, or other mental issues then I would seek an evaluation for your autism. Treating mental issues as an otherwise neurotypical might do you more harm than good.

    And finally, make sure you have a space where you can be you.

    • I should add that getting a diagnosis before being able to process having autism is valid too. But that's not the vibe I get from Sketchpad01.

      I'm all for getting a diagnosis, when it serves a goal also as part of self-realization. I'm just sad when I see diagnosis as a sort of entrance exam to the autism community.

    • Thank you! I guess I have prioritized a diagnosis more than needed. It really won't do more good for me than just allowing me to say I've been diagnosed. Which I guess I could lie about, but I think I'd rather not do that.

  • Man people are really rude, downvoting you when you're just trying to seek help...

    I'm learning about this myself. What helped and what I understand:

    • Find a non-judgmental community open to self-diagnosed Autistics where you can talk and make friends. I recommend something real time (Discord, Matrix, IRC) or something where there is more community even if it's slower paced (Forums)
    • Learn about Autism. Deep dive. Learn about it's history, masking, the spectrum, those who have high and low support needs, how Autism manifests, Autistic and Neurodiverse communities, the relationships we have with other disability communities and the LGBTQ+ community, injustices against us, the misguided communities seeking to "cure" our condition and Autism Speaks, ABA therapy, the difficulties we face in the workplace and relationships, etc.
    • Self-examine and determine how Autism affects you, your mind, your body, your relationships and circumstances. Re-examine your past with a kind and forgiving eye now that you know better.
    • Seek a therapist and/or Autism assessment if it suits you, helps, and you can afford it.
  • Honestly? Just keep living your life. It can come as a real shock to discover you are autistic, but you have to remember that you have been your whole life and have made it this far. It will take time to come to terms with - if you need help processing, that's exactly what therapy is for. Many health insurance plans these days cover a few sessions a year. If you're still on your parent's health insurance plan and are worried about asking them, you can just say you're working through some stuff happening at work/school/friends/whatever. Or that a lot of your friends have benefited from it and you want to try it and see.

    With time you'll come to accept that this is just part of who you are. It doesn't define you, and it's not a new thing that's going to throw your life off course. In contrast, it will likely actually improve your life over time. Understanding this about yourself will help you see and understand a lot of feelings and behaviors you've been unable to explain in the past. And now that you know about these things, you can seek to improve yourself or set healthy boundaries depending on what's appropriate. It's a journey for sure, and there will be parts that bring new meaning to "ignorance is bliss". But in the long run you will be a better person for it, more comfortable in your own skin.

    • Thank you, finally knowing why I do things is fantastic. I'm excited to continue to learn about what autism is and what it'll mean for me, even if it's painful at times. Thanks for the response

  • Hey!

    ADHD person stumbling in here from whatever lemmys equivalent of r/all is.

    So I was diagnosed with ADHD about 20 years ago and nothing was really done about it on the professional medical side after I had a bad time with Ritalin and I've been mostly just working it out as I go along, though I've started trying medications as I get into my 30s because it was starting to really disrupt my career.

    I'm no expert with ADHD, and even less so with autism, so take this with a grain of salt. It's just how I think of it, and how it's gone for me. Please correct me if I give a bad take, I would love to get more information and different options.

    I read something awhile ago (I think in the book Driven To Distraction) that really stuck home with me. I don't recall the quote but it basically said that the disorder is the negative aspects that are experienced.

    Which I liked, because at the time I felt like ADHD was just who I was, and that the issues were because of who I was. If that makes any sense.

    By isolating and focusing on mitigating the negative aspects, I could be my weird gremlin of a self, but also be happy and succeed in what I wanted to do.

    So if you feel that the symptoms you are experiencing match that of autism, you can look up what (non-medical) solutions work for people with autism. Lifestyle changes and intentionally learning skills that seem like you should already have but dont made a much larger difference than medication did, at least for me. I always felt like I was born without the user manuals everyone else got and had to learn it manually.

    For me medication does something more like lowering the gears when biking up a hill, now it's less of a struggle, but I still need to ride the bike. Again, that's just me.

    Finding the right medication, or combination of medications is also a journey that took me many tries. It's messing with brain chemistry, it takes a few attempts, you aren't bothering your doctor or anyone if you want to try different things.

    I bounced back and forth between Strattera and Vyvanse like 5 or six times, it can be hard to tell what's working and what's less effective, or the side effects are too disruptive. And all of the medications will have side effects that need to be weighed against the benefits.

    I don't recommend trying to self medicate (obviously), and if you are currently doing any drugs consider if you are using them to self medicate and could be more successfuly and sustainability helped by professionals. Just wanted to mention it because a friend of mine had done lot of coke because it was the only way he could work, turns out he had severe ADHD and actual medications worked way better for him and didn't destroy his body.

    You never need to justify any problems you feel you are having by telling people you have autism. However I've had lots of success when setting expectations with teachers and employers by letting them know that I have ADHD and that I can work best if we do XYZ things, as long as it's reasonable and not very disruptive I've had zero issue with it so far, that said I work in an artistic industry that's generally pretty chill, milage may vary.

    So that's my experience I guess! Sorry if it's disorganized haha, but maybe something in there will help you.

    To answer your questions more directly, and again this is my opinion:

    "What happens now?" Nothing that you don't want to do, I'm not saying you shouldn't seek diagnosis and treatment, but you have the time to do it on your terms.

    If it ever seems like the struggle isn't worth it, and you are considering suicide, seek immediate help, your brain is lying to you and you will need help to counter it, there's no shame in that. The struggle is always worth it, there's so much cool shit in this world that makes living out the time we have absolutely worth it.

    "I don't want to just start saying that I'm autistic" You don't need to tell people you may be autistic, you don't need to use it to justify issues you may be having. However if you want to, you can use it as context to start conversations on how things could work better for you to let you succeed where you may be struggling.

    It's not a moral problem to struggle, it's a moral problem to not seek solutions. Paradoxically it's also not a moral problem to struggle to seek solutions... That one took me a while to work out.

    If anyone tells you that having problems is because you are lazy or stupid they are incorrect and not helpful. If you care about their advice, or it's important as part of a job or something, try to look past their poor criticism or bad advice and see how things might work better for you, in a way that works with how you work. Some people are jerks and won't work with you, but the majority will do whatever is reasonable to let you get what you need done.

    Get help and support where you can and support others in turn, forgive yourself where you fail, and don't stop trying to intentionally seek happiness in life.

    You will likely live with this your entire life, it may change a bit as you age, your brain is just wired up a bit differently. The negatives can be mitigated, and the rest is what makes you, you. And even though I don't know you, I think you are great.

    Sorry for the wall of text, I just really resonated with this post haha, young me had all these same questions and I just dumped what I wish I had known decades ago.

    • I always felt like I was born without the user manuals everyone else got and hat to learn it manually

      Preach, I feel that every day.

      Thank you for the essay! Jokes aside I ready do appreciate it. Its good advice, especially finding concrete ways that others can use to work around autism. I hope your ADHD journey continues to go well. Thank you

  • Took that test too. 154. Still don't get it, but I relate to so many things. The lines between what is what are blurry. But, hey, tomorrow is doctor time. You should do the same! Mental health is important!

    • Nice man! I think I'll just have to man up and talk to a doctor, I don't know if I'll be able to do that anytime soon, but I appreciate it.

      also seems like I should have put less ephasiss on the test, that has just been one of the many things on the road to thinking I might have autismz but doubting online tests is a very really and good thing to do, so I can't blame folk.

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