Image: Jenny Bristol

Image: Jenny Bristol

Happy Autistic Pride Day!

Last year, at the age of 45, I finally got professional confirmation that I’m autistic. I’d wondered seriously about it for a year or so, and had fleeting thoughts for years before that. But, once diagnosed, I could almost feel all the pieces drop into place. Everything made sense. Finally.

Some people that I know or whom I meet might be surprised that I’m autistic, since, other than being socially awkward and never knowing what the heck to do with my hair, most of my traits aren’t outward ones. I don’t flap my hands, I’m good at eye contact, and I don’t fit a lot of the autistic stereotypes that exist. But I’m a good example of how not everyone fits that mold. In fact, most autistics don’t.

I’ve struggled with how often to talk about this, and how much to say when I do; I’m a very reluctant public voice about most of my personal experiences. But I know how helpful it is when I read others’ personal experiences, so I felt like I should go ahead and keep writing about it. At least occasionally.

For this year’s autistic pride day, and on the one year anniversary of my “hey, guess what, world, I’m autistic” post, I thought I’d share some of my thoughts and observations about myself from the past year, about how being diagnosed has helped me and changed my point of view.

How has my life changed in the past year? Fundamentally, very little has changed. Though Geek Club Books did interview me about the books I’ve written (including the one I finished last summer!), and they invited me to write a post about why we should do away with Autism Awareness (replacing it with Autism Acceptance). But behind the scenes, in my own understanding, acceptance, and celebration of myself, and being more unapologetic for who I am as a person and how I present myself to the world, it has been quite different.

For my diagnosis and since then, I’ve closely examined my reactions and behaviors, and I’ve been able to dissect myself, understanding myself so much better, and forgiving myself for being the way I am, giving myself permission to just be me and not be so apologetic about it. It helps that I no longer spend time with people who make me feel like I have to apologize for myself. I’ve become very picky about whom to spend my energy on.

I’ve spent this time reframing my whole life, reassessing it and re-experiencing it through this new context. I’m realizing that sometimes people thought there were certain things wrong with me, but those things were totally normal for me, they are part of me, and they are often my biggest strengths. Unfortunately, some people haven’t recognized them as strengths; instead of seeing how valuable these traits could be, they tried to make me feel bad for having them. And it worked for a while, too. But not anymore.

I’ve always felt a bit out of step with most people. It was rare as a kid to find someone I clicked with. I did find a few people, but we or they moved away eventually, and I had to start over. I ended up finding more people in high school, thanks to my science and tech school that was full of nerdy misfits like me. That made a huge difference during my adolescence.

But, at last, learning as a middle-aged female that I’ve been autistic all along, I finally have words for how I feel, how I act, and who I am. Labels can be so freeing and eye-opening; having the vocabulary to put my feelings into words, and to explain why I am the way I am, has been so empowering.

From here on, it gets a bit rambly and disjointed, but I’m out of energy to polish this perfectly.

Some snapshots: The trauma I felt as a kid as I was bullied daily in elementary school and junior high. The gaslighting and emotional abuse in romantic relationships. The being told I was broken when I knew I wasn’t. The knowing that my traits which are odd and sometimes inconvenient are also invaluable strengths, both in interpersonal relationships and in the greater society. My need to control my environment and being particular means I know how to make myself feel more comfortable, so I can thrive. My compulsion to tell you why your plan won’t work means I can think through a plan incredibly quickly, almost instantly seeing the inevitable result. But instead of being affronted and thinking I’m putting your ideas down, perhaps try to see it as an opportunity for you to save money and effort, improve your plan, and end up with a better result.

I’ve said for many years that I’m an all or nothing person. Why wasn’t this a clue? Probably because I didn’t know enough about autism. I only knew vague ideas from what popular culture and my internet comings and goings told me. It was only when I started reading #ActuallyAutistic #OwnVoices that I discovered more shades of grey, more details, more examples. Especially from women.

On Masking: I’ve always masked, since at least 3rd grade, which is when the bullying started at school. But I didn’t know that I was masking. I had no idea what that was. Now, I can almost audibly hear and feel a click when I put the mask in place. But I no longer use it to try to fit in anywhere, exactly. I might use it to not draw attention to myself, but only as a tool to benefit me and those I care about. I use it for work sometimes. I use it out shopping. I use it at the doctor’s office. I use it when I don’t feel like dealing with what happens when I’m 100% myself, so I just put on my “public face” and avoid awkward situations. I use it to tap into my set of public skills that I’ve worked so hard to have. But I am in control of my mask. It is no longer in control of me. Sometimes I only put it on halfway. I use it for my own convenience, not for the convenience of others. I used to use it so often, it was exhausting. So I’ve had to work hard to relearn how to be my complete, authentic self, sans mask.

I used to think that maybe I was half autistic, half not (as if that were such a thing). Now I realize that I’m all autistic, but only have the energy or mental clarity to get by in our world about half the time. The other half I just can’t keep up the mask or the effort, since it’s so exhausting. This is when I’m especially grateful to work at home and have the family I do.

Embracing my true self: Rather than think I’m unusual for liking some things or not liking others, I am embracing my love of certain things, realizing that my style and preferences are part of what makes me me, what makes me different from others, what makes me interesting, and helps me provide added value to the world. I don’t need to be like anyone else; we don’t need two of someone else. We need original ideas and styles. I am actually enjoying my interests more and reveling in my own combination of tastes. When something really moves me, grabs me, inspires me, I take a moment to revel in it instead of letting it pass. It is helping me be more me. What must it have been like to have this experience your whole life? I feel a bit like parts of my life were robbed, or at least a huge missed opportunity. But in reality, even if I’d had this diagnosis before, I wouldn’t be having the revelations I’m having now or the appreciation for what I’m now appreciating. I had to be not diagnosed for there to be such stark realizations, so many “aha!” moments. Things happened the way they happened, and this is what I have to work with.

Autism is not a disorder. It’s just a different order. Just because we don’t fit in with the mainstream doesn’t mean there’s something wrong with us, something out of order. It just means that the mainstream was designed for other types of people, and we just have to find a way to exist within it. Or not.

I still feel like being autistic fits me. Being able to be myself and having good and specific reasons for standing up for myself lowers the walls that I’ve put up and that others have put up for me.

I stopped making excuses for or apologizing for my needs. I instead have learned to stand my ground for having these needs (and because those I live with are 100% supportive, I’ve been able to help those around me understand my needs too). Here’s an example: I’ve always been the type to just talk about whatever I need to, to talk through things, complain, work through them. It’s part of my process. I get to the end and then I’m at the end. It needs to be done out loud with my designated person (Rory) who listens dutifully and interjects when necessary. Even if what I have to rant and rave about is a complaint about him, he knows that I’m just going through my process and he just takes it in, makes me feel heard, addresses my concerns, and then we deal with any issues that come up. He never takes offense at my tone, which is good because, if I have to moderate my tone greatly, I don’t feel comfortable enough to actually let it all out and be myself. He takes it all in the context it’s meant to be in, and then we’re done. Things are good.

I wonder how my life would have been different if I’d been diagnosed as a kid, or even as a young adult. Would I have known myself better my whole life, or would I just have been pigeonholed and emotionally abused by The System? I’m still grateful for not being diagnosed younger, but I am so grateful for my diagnosis now. I’m glad to have gotten to know myself in a vacuum of vocabulary and labels before seeing myself through the autistic lens. This way I can see the decades of my behavioral and thought patterns and see how it all makes sense now. These kinds of labels wouldn’t have been helpful to me, during the time I grew up, the way the educational system treated those with labels during those times. Though I’d actually never heard of autism until I was an adult. Instead I was labeled as gifted, along with a bunch of other people, many of whom were probably also autistic, and was put in some gifted classes where I thrived.

I know I’m fortunate to have not had many mental health problems relating to remaining undiagnosed. I’ve had anxiety my whole life, but that would have been there regardless. I’ve always had at least one person in my life, at any given time, understand me and love me unconditionally. That made all the difference (thanks, especially, to my mom!).

But it would have been helpful to have the diagnosis after I graduated from college, to help me understand why I struggled so much with a conventional 9-to-5 job. Working 40 hours a week, in any job, is so difficult for me; my mental health suffers. I can feel myself being dragged down. Working at home helps immensely, but it’s only a help.

With an earlier diagnosis, I also might have learned about autistic burnout and why it ends up being “all too much” periodically. But maybe I wouldn’t have learned that. It’s only been recently that various amazing people have written articles and books that I’ve found helpful to understand myself. If I’d been diagnosed before these existed, I think I would have felt it was a misdiagnosis, since I don’t fit the stereotypical mold.

But knowing I’m autistic helps me recognize it in my kids, and it’s helped them understand themselves at a much younger age than I did. They’re so much better at identifying and dealing with emotions and putting words to it all, because I’ve been able to recognize where they struggle and why, and have given them a safe space where there haven’t been value judgments on their own sets of traits. Self-understanding is one of the keys to success, I feel.

Sensory issues are a thing that comes along with autism for many people. I used to think, “Oh, I don’t have any,” and then I thought about it. I actually have a lot; they just aren’t all the regular ones. Sure, tags in my clothes bother me, and especially did when I was a kid. But I also have issues with stickers, aged stickers, wet paper, previously wet paper, and sticky things in general. Then there is my intense discomfort when I spend much time under fluorescent lighting; my vision goes black. There’s my picky eating. My inability to be around bad smells. I just thought all of these were just me being me, a weird and unusual person. But I’m not that weird nor that unusual, it turns out.

I finally feel like myself. I’ve always liked myself quite a bit. But now I like myself even more, if that’s possible. With my diagnosis, there’s nothing to grieve. I didn’t lose someone I used to be. I’ve been this same person all along, only now I have vocabulary to understand myself. That’s one of my traits (superpowers?): I can only be myself. This means I’m a horrible actress, but also a horrible liar. You get what you see with me. So people know they can trust me, they know they can rely on me. I’m pretty much WYSIWYG embodied.

I can’t wait to see what I do with this next chapter of my life. I know it’s going to be good.

A few articles I’ve found within the past year are interesting and might be helpful to some of you out there (this list isn’t comprehensive, just a few I made a note of):

  • “Autism doesn’t have to be viewed as a disability or disorder” by Nikki Stevenson, published on The Guardian website. This one makes some generalizations (such as talking about “the gay community” which erases many groups under the LGBTQIA+ umbrella), but it makes a lot of great points about autistic people.
  • “If Not ABA, Then What?” by Maxfield Sparrow. ABA (Applied Behavioral Analysis) is a commonly-used “treatment” for autistic kids. When compliance-based training is used, it’s extremely harmful, leading to lifelong PTSD in some cases. This article talks about how to accommodate your child’s needs rather than teach them to ignore them and suffer through. It’s a useful read for parents of autistic kids even if they have not encountered ABA, though, because it gives some wonderful strategies for connecting with and effectively helping your kids.
  • “ABA” by Max Sparrow. This is an essay about ABA and how harmful it is. Definitely one-sided, but if everything you read is pro-ABA, this is a valuable counterpoint.