Sometimes I wonder what my life would have been like had I been diagnosed with ASD as a child. Would it have helped me? Would there have been a greater understanding for the seemingly odd things I do? Or would I have been labeled and pigeon-holed? I can never know, but I do know how things have changed for me since I was diagnosed in March of this year. I now have a word for my lifelong struggles. I know why, despite years of therapy to treat my anxiety, I never really got any better. I know why it hurts to look people in the eye. I know why I can comfortably sleep with someone who is only a friend but cannot handle kissing my husband. I have a lot of answers for things that I once thought were just evidence that I was an awful person who did not deserve happiness. But I also have a lot of doubts about my future.
Quite frequently, I hear that I don't look autistic or that you'd never be able to tell I have a "problem" if I didn't mention it. Even my parents have said something to this extent. While I do, for the most part, have low support needs, the main reason most people struggle to "see" the autism in me is because I'm a master of masking and performing normalcy. I wouldn't have made it this far had I not copied the mannerisms of others; I had no choice but to put on an act. While those statements about not looking autistic are problematic in and of themselves, the real issue at hand is that we, as a society, seem to have this idea that if someone can perform "normalcy," they are fine and don't need support. Or even worse, the person is just weak and not trying hard enough. I've found ways to navigate through life up to this point mostly unassisted, largely through masking (which is a topic for another post). But just because I can push myself and act neurotypical does not mean I am, nor does it mean I'm not suffering for it.
Trying to fit in and not out myself as neurodivergent is exhausting. It takes a lot of focused energy just to perform social expectations (eye contact and small talk, for example) and do without aids that would make it more comfortable for me to get through the day (i.e. headphones and an ample amount of personal space). When I cannot do those things and it causes me to have a meltdown (often presented much like a panic attack), I am looked down upon: I cannot regulate my emotions, I should have asked for help, I need to learn to deal with change, I need to learn to multi-task. Those are all things I've heard in response to my meltdowns, but they are all skills that do not come easily to individuals on the spectrum, particularly adults who never got a chance to work on them as children. The exhaustion of masquerading as a neurotypical or the shame of failing to do so often make me feel as if I'd be better off withdrawing from society. There is no need for someone like me-- too sensitive, too fragile, too unpredictable.
While there has been a greater push for autistic people not to mask their behaviors and still be accepted in society as they are, we are far from true acceptance. We are still, by and large, expected to blend in no matter how it hurts us. We are expected to comply and ignore the pain. In fact, that is the basic goal of ABA therapy-- often and unfortunately considered the gold standard of therapy for children on the spectrum. And I think that is partly because many people believe that if we just keep doing the things that make us uncomfortable we will assimilate and overcome the pain and anxiety. But autism doesn't work that way.
No matter how many times I go to a grocery store, I am always overwhelmed by the number of people, the bright lights, and the sounds. No matter how many times I go to a restaurant, I am terrified of eating in front of other people and talking to the server. No matter how many times I attempt to focus on multiple tasks at work, I always end up producing sub-par results on every task when I would have performed much better had I been given the chance to focus on one thing at a time. I can use coping mechanisms, such as my aforementioned go-to headphones, but those, too, are often viewed as unacceptable in a community or professional setting. I can't adapt the way I am expected to adapt; I can only pretend. And I am required to pretend because, if I don't, there is no place in society for me. But spending decades pretending to be someone I am not has wreaked havoc on me, and from most camps, I'm hearing that I'm just supposed to accept that and soldier on. It shouldn't have to be like this, not for me, not for anyone with any disability.
So now I am faced with another question I likely will be able to answer one day: will having a diagnosis change the way I am viewed? What happens when I tell a potential employer I'm autistic and do not possess some of the most common workplace skills such as multi-tasking? Will my diagnosis overshadow my education and experience? Will dealing with someone like me be deemed more trouble than I'm worth? I'm quite sure I already know the answer.
Knowing who I am and having a word for it is a double-edged sword. It has taught me a lot about myself and helped me cope in a world that produces so much fear and anxiety and pain for me, and for that and for those who helped me receive my diagnosis, I am grateful. Where I once felt that my deficits meant I just wasn't pushing hard enough, I know now they are a part of me that require some degree of support. On the other hand, it has brought me to the realization that my diagnosis means I can't always live up to the expectations set forth for me. There are some things I will never be able to do, some things I will never be able to comprehend because my brain works differently. I need support in a society that has little compassion for anyone who is incapable of total self-reliance, and that makes me feel pretty hopeless sometimes.
I don't know if sharing my experiences as a late-diagnosed woman on the spectrum will help bring forth greater understanding and acceptance and hope, but I've got to start somewhere. I've got to take off the mask so it won't be so hard for my children to do the same one day. So here goes: I'm Andrea. I'm a 31-year-old married mother of 2 boys and 3 cats living in Erie, PA. I have a B.A. in creative writing. I'm covered in tattoos. I play a shocking amount of video games and write essays about the characters in them. I'm a big fan of Goth culture but an even bigger fan of hockey. I enjoy listening to all sorts of metal and baking desserts. I am all these things, and I'm autistic-- let's, as the kids say, normalize that.
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