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?

  • BOMBSMEnglish
    25•1 year ago

    I was diagnosed at 40. It was life changing. No more guessing what was going on, and no more gaslighting from people telling me how to think or feel. I can’t count how many times a doctor or mental health provider would tell me that I wasn’t experiencing what I was experiencing. I’ve even had doctors imply that I was substance-seeking or creating drama for sympathy because I shouldn’t be seeking medical care for what I was reporting, so they would purposefully deny medical treatment to prove a point. I have gone to the doctor with friends so they can see what it’s like and talk to the doctors so that they wouldn’t treat me like shit. I’m not kidding. The last time I went to the ER, I had my friend that’s an ER doctor take me. Surprisingly, once I got the autism diagnosis in my charts, the doctors started treating me with compassion. It was truly surprising.

    After diagnosis and learning about autism, my entire life started to make sense. I finally had a term for my difficulties that people couldn’t seem to figure out. All those ER visits for ridiculous injuries and ailments made sense! I have gotten more out of YouTube channels ran by autistics than I have in 10 years of mental health services treating me as allistic. More importantly, I could develop a plan on how to adjust. No more tolerating over-stimulation because I’m supposed to. No more pushing myself beyond my physical limits because that’s what’s expected of me. No more having to mask all the time!! My life could be divided into before and after diagnosis.

    I haven’t used it for anything like disability or work accommodations. I have yet to come out at work, though I’m almost certain they at least have their suspicions. However, I’ve used it to learn about myself and what would be helpful. I also learned that the people I’ve been looking for weren’t associated with a specific nationality, ethnicity, hobby, occupation, or movement. My people were those that had a similar nervous system. It’s as if allistics and autistics are two different species with the same appearance, the world is tailored for the allistics, and we don’t know who is who until we develop this insight. Interestingly, once I found out I was autistic, I realized that the vast majority of my long-term friends were autistic as well. I remember calling friends to tell them I was autistic. Most said they already figured that and told me they were autistic. Until then, I just thought they were cool, calm, smart, and unique people. They still are, but understanding that it is because our nervous systems work differently was insightful.

    There were two major benefits specific to the autism assessment itself. One, I didn’t wonder if I was autistic anymore. Once I started having my hunches and people telling me that I’m likely autistic, I would still doubt it. It’s as if I thought, “Here I go again. Making up another excuse for all of these issues.” The actual thorough evaluation put that obsessive thought pattern to rest. I had convincing confirmation that I am autistic. Two, the results of the evaluation were specific to me. Autism isn’t one spectrum. It’s a bunch of spectra, so every autistic person is autistic differently. Working with an autism therapist and using the results of the evaluation was helpful in tailoring my life to meet my neurological design. For example, I am terrible at identifying malicious intentions in others. It’s just really hard for me to be aware that people will pretend to be caring and amazing just to take advantage of people (especially autistic people 😠), and the methods allistics use to identify people that do that don’t function for me. So, we’re working on a system to help identify that with the capacities of my neurological capacities.

    In summary, the benefits have been life changing. The medical system treats me with more compassion. I treat myself with more compassion. I can work on developing social circles that are healthy. And I can make adjustments to my life to be happier. It’s like I’m learning to live again, but this time, rather than with misguided and purposeful allistic gaslighting or blind trial-and-error, it’s with helpful and healthy guidance, much of which is provided by the autistic community that are pioneering the path and some by helpful allistics that are compassionate.