Sorry if this seems stupid. My kid was diagnosed with type 1 autism, formerly asperger’s. We weren’t even testing them for that (it was adhd), but the doc pointed out a lot of behaviors that are classified as autistic. I never thought of those behaviors that way, because I did a bunch of that stuff when I was a teen, too. I just learned I was weird and figured the rest was due to my super dysfunctional family. I’ve learned to cope. I keep my weirdness to myself and pass for a normal person pretty well. No one would ever guess I’m autistic (again, I’ve no diagnosis but it’s implied).

So, with that context, would there even be a point to getting a diagnosis? What would it benefit me? I’m middle aged, so I don’t need educational accommodations. I’ve learned to adapt, so idk if I’d even be diagnosable.

Idk. I’m still just messed up learning that my kid, who I thought was neurotypical and a LOT like me is considered autistic. How different would my childhood have been if I had been evaluated when I was younger?

  • @[email protected]
    link
    fedilink
    English
    102 years ago

    The partner is thinking about getting evaluated after getting recently recommended. One of the more important factors for them is that they can potentially be prescribed medication that suits their needs better for their anxiety than the one they’re already using.

    It probably could be extended to other types of medication too.

    • @[email protected]OP
      link
      fedilink
      English
      42 years ago

      they can potentially be prescribed medication that suits their needs better for their anxiety than the one they’re already using.

      Oh? Can you explain this more? I am on anxiety meds. They’re good, but the side effects are not great. DM if you need to.

      • @[email protected]
        link
        fedilink
        English
        5
        edit-2
        2 years ago

        (Au/ADHD) My experience was that anxiety meds didn’t work as well as vyvanse. I can process information at a consistent rate, instead of being at the whims of my brain shutting down when overwhelmed by random factors (mostly having to consciously monitor and interpret peoples emotional states). I admit that I got it from my ADHD diagnosis, but the struggles were absolutely rooted in my autism.

  • @[email protected]
    link
    fedilink
    English
    112 years ago

    Im glad you’ve asked this, OP. Because I’m in my 40’s and I have the same question. I have a beautiful and intelligent child, and my lovely wife keeps seeing her do things that she says are signs of ASD, and I keep having to say “No, that’s normal, I do that all the time…”

      • @[email protected]
        link
        fedilink
        English
        42 years ago

        Since making my comment, my wife and I have started researching the subject of autism in adults, and it’s wild. I wish I’d been able to get this information 35+ years ago.

  • @[email protected]
    link
    fedilink
    English
    7
    edit-2
    2 years ago

    I’ve wondered that myself. I don’t have kids but after looking at all the symptoms a lot of them fit, and a couple of friends have told me they “just assumed I was on the spectrum” when I brought it up recently. I had no idea, but I don’t see much use in getting diagnosed now I just turned 40…

    • @[email protected]OP
      link
      fedilink
      English
      42 years ago

      a couple of friends have told me they “just assumed I was on the spectrum”

      I’m slowly asking people if they thought I was autistic, lol. I’m getting a lot of, “now that you mention it.”

  • BeautifulMind ♾️
    link
    fedilink
    English
    6
    edit-2
    2 years ago

    Sorry if this seems stupid.

    It’s not stupid. It’s where I was for a while (I’m in my 50s now) figuring a d/x would tell me what I probably already knew but would also carry a bit of a stigma with it. Like you, I’d learned to adapt, but the thing I didn’t see for myself was how hard I’d been working to hide that there was anything to adapt to.

    At my wife’s urging, I sought an evaluation and in retrospect I’m very glad I did. The results came back mostly telling me things I already knew (I’m super-smart in specific ways, distinctly average in particular ways) but the thing I didn’t see coming was that a d/x would put my marriage in the context of my Autism, and that means my wife gives me grace she didn’t before when it comes to my hyperfocus and attention deficits, for when I need to leave social situations because I’m out of my social-energy budget, stuff like that.

    Things that used to annoy or embarrass my wife (that when a social situation became too much for me I’d ghost, that I’d struggle in circumstances where unfairness feels intolerable, etc.) now show up to her as me responsibly doing self-care, or as me living my values as my identity- and instead of bending herself to fixing those broken parts of me, she understands that these are just me doing my best job of peopling in the face of how my brain works. Long story short, being understood in this light gets me better understood, I’ll never regret it. Not feeling like I’m an imposter with broken parts that must be hidden is sooooo good.

    After recognizing the value of this dynamic in my marriage (and in my relationships with my wife’s friends) I made it a project to recreate it in my workplace- and it happens that as my co-workers re-contextualized my foibles and eccentricities into that light, it became a lot easier for me to ask the kinds of questions I’ve long not asked for fear of looking dumb- and they’re more than happy to answer and so much has gotten so much easier. Not feeling like I have to mask is a great big relief.

    Along the way, freeing myself up in the contexts of my marriage and in my career, I’ve found ways to be a better parent as well as be a husband and co-worker. It’s as if masking doesn’t work.

    Of course, like any good denizen of the spectrum™, I’ve made unpacking my own neurodiversity into a special interest. It explains soooo much. (there’s too much to pithily explain, I’ll spare you the info dumping in this thread)

    Perhaps non-intuitively, recognizing all the ways I’ve been living life the hard way (masking, avoiding social interactions I’ve been thirsty to participate in for fear of being too weird) brings quite a bit of grief with it- why did I do all that the hard way when it’s easier not to? Processing all of that is quite a bit of work, but it’s oh so liberating.

      • @[email protected]
        link
        fedilink
        English
        32 years ago

        I was diagnosed just this summer, at 60. BeautifulMind says everything that I wanted to, but better. I am learning to unmask among family/friends and am finding it leaves me so much extra energy to do things I WANT to do.

  • @[email protected]
    link
    fedilink
    English
    182 years ago

    I’m 34. I got tested earlier this year so I could better understand myself. Somebody quoted something at me that I’m not remembering properly but it was something like “it’s better to be a normal zebra than a strange horse” and I’m happy knowing I’m a zebra.

    • @[email protected]
      link
      fedilink
      English
      122 years ago

      “Why do you need a label? Bc there is comfort in knowing you’re a normal zebra, not a strange horse. Bc you can’t find community with other zebras if you don’t know you belong. And bc it’s impossible for a zebra to live a happy and healthy life feeling like a failed horse.”

        • @[email protected]
          link
          fedilink
          English
          5
          edit-2
          2 years ago

          It’s an older tweet, you can find it here

          I love it as well, it explains it so well. Labels are there so you can find the community and the help that you need.

  • @[email protected]
    link
    fedilink
    English
    172 years ago

    On a “meta” level, the more adult diagnoses we have in the medical records around the world, the more data health services have to understand that a) diagnostics in children are full of holes, and b) yes hello ASD people don’t evaporate at age 18

  • @[email protected]
    link
    fedilink
    English
    192 years ago

    First let me welcome you to the “hey wait that was autism!?” phase. It’s a trip.

    As this thread as a whole states, it depends on what value that diagnosis brings to your life. Weight against how much that diagnosis will cost you. Research autism for yourself and your kid, review your own history and talk with people who know you.

    In my region of the US there is one licensed human doing adult diagnosis, on an 18 month waiting list for about $2k. He would also require a 4hr interview with at least one parent in addition to the 8hrs with me. At a time when my family was still angrily listing all the reasons my son’s diagnosis was wrong. So my son has a diagnosis, i likely will never bother.

    When i started asking close friends for thier opinion, most responded with “duh”. I was not infact, as good at masking as i’d assumed. Though it’s not an uncommon experiance to find a few people extremely attached to their own image of you. Those relationships tend to end poorly when you open up about your actual lived experiance. So be aware of that cost while you’re exploring this. You’ll likely be better for their absence but the process can still hurt. The end of one of my oldest and closes friendships resulted in me paying $600 for a full genome sequencing, followed by months of learning how to read the raw files from that. So i could understand the one genetic study thats been done on tactile defensiveness. Having the report put me in the 80th perentile for autism was kinda meh at that point, so i don’t believe an offical diagnosis would do much for my piece of mind either. Finding the GABRB3 mutations identified in that tactile defensiveness study also in my genome though. Having that specific answer was worth the time and expense.

    Like most people here, i’m a lot kinder to myself now that i have some understanding of how my brain proceses things. I let most of my masking fall away. And was shocked to discover most people don’t go through life with every muscle in their body tensed up like they’re constantly hearing nails on a chalk board.

    • @[email protected]OP
      link
      fedilink
      English
      132 years ago

      First let me welcome you to the “hey wait that was autism!?” phase. It’s a trip.

      LOL that is happening at a hilarious pace right now.

      • @[email protected]
        link
        fedilink
        English
        102 years ago

        I’m right there with you. Going through all of it right now. I have been considering getting an official diagnosis, but I’m 100% sure I’m on the spectrum, so I’m not sure if there is a point.

  • @[email protected]
    link
    fedilink
    English
    62 years ago

    I’m in the same boat. When it comes to diagnosis I suppose it depends how secure you are. If you’ve made your peace with the behaviours, adapted and possess a healthy self awareness then you probably also have the right people around you. A diagnosis is just gonna confirm what you already know and the benefits are limited to advice about accessing educational resources and perhaps a network of fellows. Maybe it’s better to focus your time, attention and resources on helping your kid if you’re happy in your life. On the other hand, if money were no object I would seek a professional opinion. I don’t see any downsides other than the cost.

  • @[email protected]
    link
    fedilink
    English
    82 years ago

    First of all I’m sorry that you’re struggling with this. As a parent, I’m sure it must be difficult to see so many things reflected in your kid, but in an entirely different context of autism.

    A couple pointers:

    This is rather semantic, but the modern understanding of autism is that it’s a spectrum. Asperger’s is no longer an official diagnosis, but using the word can clarify what type of autism you’re dealing with. Autism comes in a myriad of forms.

    I also want to say, I think an adult diagnosis can help in understanding yourself, and understanding your own relation to the world. It can re-contextualize your experiences you’ve had. And it can help you deal with current and future challenges. You may not need educational help, but many people who are diagnosed with anything like adhd or autism struggle with something in their lives, a struggle that mostly stems from being neuro-atypical. Educational, vocational or professional challenges are not the only things people with autism can struggle with. I struggle with human contact, intimacy, connection and black and white thinking, for example.

    Lastly, and I know this may be hard to read. And please don’t take this personally. This isn’t your Kids fault. I only say this because it is something that happens sometimes. A parent learns about their own struggles, their own challenges, through their kid’s diagnosis and care, and sometimes parents can’t separate the kid from their own challenges anymore. This isn’t necessarily directed at you, OP. But they need you right now, no matter how much you may be hurting yourself. Being diagnosed as a kid can be terrifying. My first question when I was diagnosed at 9 years old was ‘Am I gonna die?’

    I hope you have people to lean on. Truly do. You need to decide if you need a diagnosis for yourself. If that’s gonna help you make life easier, understand yourself and your place in the world better. Maybe talk to people who went through that when they were older. I know some people who had a late diagnosis and even though it messed them up for a few days (I mean, you put your entire life in a different context, it’s not nothing) it ultimately helped them.

    Hope it helps. Wishing you and the kid the best. Take care.

  • @[email protected]
    link
    fedilink
    English
    7
    edit-2
    2 years ago

    Personally as someone who snuck through too I don’t think I’d ever get a dx. I’ve had deep moments of closure and certainty and they did not come from medical settings. However these moments require you to be looking for the right things, having the knowledge to know what you’re looking for and the perception to judge yourself and your past through a neutral, almost clinical, lens. My not-professional advice to some in your position would be just do a lot of research(you’ll probably be doing this anyway), let it sit, and if after a while you don’t feel like you have any more certainty, ask yourself again if you want to get a diagnosis. Just as a caveat I wanna write that this advice is not for anyone who is eligible to receive benefits that would improve their quality of life if they got a diagnosis. The field I work in is related enough that I feel compelled to say that.

  • @[email protected]
    link
    fedilink
    English
    212 years ago

    I’m grateful for my adult diagnosis (at age 35) because all of a sudden things made sense. I wasn’t being lazy - people liked to call me that, because on a good day with a topic that interests me I will outperform most people. The logical conclusion was if I can do it once, i can do it all the time, and when my performance is subpar it must be because I’m lazy.

    The diagnosis has become my shield and armor. I’m not lazy, my brain just refuses to engage on things that do not interest me. There’s no way I’ll ever get economics, and it’s not because I’m lazy.

    It helped me be kind to myself and adjust my plans and choices to my nourology. I may be shitty at economics and in being tactful with people, but I’m a great softwaretester, because I do care about people and want to help avoid making people cranky with dumb mistakes in software. The helpless rage I get from a piece of malfunctioning software is something I want to minimize.

    Instead of struggling I enjoy my work now, and having a diagnosis allows me to communicate to people what to expect. I can’t read between the lines - if you want me to do A, tell me so. Don’t mention to me that B and C need someone that needs doing, because I may or may not get you want me to do that - but I sure as hell won’t get that you also want me to do A, even if it is a prerequisite.

    I’m able to say that I work better with a dark, quiet place, so please don’t seat me next to the person who has meetings all day. I can probably work without these accomodations, but I’ll be miserable and my work quality will be poor.

    Coming back to your question: you don’t need a diagnosis per se. I know people that I suspect are autistic but they would probably feel worse knowing it. But what I think you should do is read up on autism like crazy. For your kid, but also for yourself. Read accounts from autistic people, look for autistic spaces. There’s plenty of organizations that care for profit and not for actually helping autistic people.

    What you will gain is insight into how autistics manage life, what helps them, and youecaneuse that knowledge to help your kid and maybe even find ways to improve your environment. Even if you feel well-adjusted, maybe understanding why something works for you and how youecan make it better can help.

    The benefit in the diagnosis for me was understanding myself and the ability to adjust my environment to my needs. For me, the diagnosis is incredibly helpful, but for you and your unique situation, it may not. I heard from people in other places that an official diagnosis has negative legal effects on them. Go research, take away what you need, and once you digested the idea and feel you understand more about it ask yourself again if a diagnosis could benefit you.

    You’ve lived so long without, a year or two probably won’t make a difference. If anything, hopefully more doctors are aware of autism and able to successfully diagnose you.

  • @[email protected]
    link
    fedilink
    English
    262 years ago

    tl;dr: My formalized autism diagnosis has been very valuable to me because it has guided me to an autism-specialized psychotherapist, who has then provided me with a wealth of understanding and therapeutic techniques that center around autistic behavioral traits.

    I’m a 54yo male who was diagnosed with autism (mild) last year. I (and many people I know) have suspected that for a while, but I wanted to find out exactly where I stand on the spectrum. For my interests and needs, the diagnosis was very much worth it. I have gotten a lot of value out of it.

    I went to a psychologist who specializes in autism testing for all age groups. Autism testing is all that she does, so she doesn’t do ongoing therapy with any clients. The diagnosis process involved a 4-hour session with an interview portion, and then a number of different computer-based tests (I believe there were 5). After reviewing all of that, the psychologist wrote up a 13-page document that had the details of my test results, a section on the types of behavior traits that I have which are likely due to my autism, guidelines for continued autism-centric psychotherapy, and even guidelines for non-autistic people on how to communicate with someone with autism. It is a very thorough writeup.

    As someone else mentioned in this thread, I also wanted to do this for closure. I wanted to know for sure where I stand on the spectrum, and I got a lot of information about that. By learning the language that is used to describe autistic behavior traits, I have found that it is now a lot easier for me to communicate with others about how autism affects me.

    The biggest benefit from being diagnosed with autism is that I was able to find a psychotherapist who specializes in doing cognitive behavior therapy with autistic people. Working with her has been very eye-opening. I have worked with about half a dozen therapists over the past 25 years, but I never felt like any of them ‘got me,’ and I never felt like I benefitted much from their therapy sessions.

    With my new autism-centric therapist, I finally feel like I can talk to a professional who really understands what it’s like to be me, which is quite refreshing. This is important because I have learned that people with autism will often respond better to certain types of cognitive therapy, and worse with other types. Having a good diagnosis can help a therapist hone in on appropriate types of therapy that are more effective with autistic people.

    She has helped me immensely with understanding things like how I respond to trauma situations (which can be amplified in an autistic person). She helps to bring clarity to my internal thought processes when I deal with stressful problems in my personal life. She regularly talks about scientific studies that show correlations between autism and other health-related issues, like nutrition and medication sensitivities. Apparently, due to the genetic makeup of many autistic people, there are certain medications that will perform differently in an autistic person than someone who is neurotypical. This is especially true with medications that affect neurotransmitters, like antidepressants or anti-anxiety meds.

    Everyone is different, and any individual would have to weigh the pros and cons of getting a formalized autism diagnosis. I just wanted to offer up what I believe has been a very positive experience with getting diagnosed as an adult.

    • @[email protected]
      link
      fedilink
      English
      152 years ago

      I just re-read OP’s original post. Particularly this:

      How different would my childhood have been if I had been evaluated when I was younger?

      There are many times in the sessions with my new therapist where we have talked about things that have happened in my childhood that were very difficult for me to deal with, and that were sometimes traumatizing. I desparately wish that I would have been diagnosed at a young age and had the resources that many autistic kids have these days. I am convinced that having a childhood autism diagnosis would have helped me to better handle situations that I have experienced which have left deep wounds in my psyche.

    • @[email protected]
      link
      fedilink
      English
      52 years ago

      Wow, you just clarified something for me I didn’t realize was part of the autism. Drugs like Valium that are supposed to calm you down have the opposite effect on me.

  • @[email protected]
    link
    fedilink
    English
    42 years ago

    I got a diagnosis partly because I needed accomodations at work. Light sensitivity and sound sensitivity are a bitch in an auto dealer showroom.

    How different would my childhood have been if I had been evaluated when I was younger?

    I have the same question, and I’m working through it with my therapist. I’m not sure there will be an answer that makes everything “better”, but it does help to realize that I have been this way my whole life, and that I can make my life easier now that I’m an adult in ways I couldn’t as a child.