I wrote this piece to give women in particular practical steps on what to do when they know they are Autistic, but can’t get a diagnosis. The good news is, the general consensus in the Autistic community is that self-dx is completely valid, and this is true more so now than when I realized I was Autistic 2 years ago.
The interesting thing is that if you tell people that you “realized you were Autistic” in an interview, they will, in fact, print that you were “diagnosed as Autistic” anyway since it’s hard for neurotypicals to believe that anyone would self-dx anything and tell people about it. I get that. Web MD tells a lot of people they have conditions they do not in fact have. However, this is different. This is something we do in the Autism community not because we looked up “symptoms” and decided we had them. Instead, we realized we didn’t fit into society and wondered why that was. We started talking to others who were like us, and realized we had more in common with those “others” than we did with people we’d known our whole lives.
We pieced together that if many of them had formal diagnoses of Autism and we were so very like those people (and yes, our “symptoms” might be a little different from each other, but we know them in such a way that it was impossible to shake the idea that we were, in fact, like them), we simply had to be Autistic, too.
We had to be.
And some of us went to doctors or psychologists who said we weren’t Autistic. And some of THOSE doctors had never seen an adult female presenting, so they didn’t know what one looked like when one did, and others knew that we were Autistic and hid it from us because they believed it wouldn’t help us to know.
Instead, we learned, over time, that we were Autistic by being accepted by the people with-and-without formal diagnoses as being part of the group.
We shared our common stories and realized that even if what, specifically can “set us off,” we all had meltdown variants and/or had learned how to avoid them, over time.
And we all took refuge in rules, so sometimes we fight amongst ourselves because the rules we, ourselves, internalized, do not allow us to be open to other perspectives. As a Catholic Autistic, I get a LOT of flak from people because of my beliefs about abortion, contraception, and marriage. They believe it’s because I’m rigid, however, I am open to their perspectives being different than mine and want to chat and learn because even if we disagree, I care about them as people and want to learn about what they find important to them. They, however, rarely are interested in hearing my perspective, so we just don’t talk about those things and sometimes they blow up at me and block me because I said something I believe they disagree with. We can be a touchy bunch.
Regardless, we are a community and we are very alike in the ways that matter, even if we don’t like each other all that much sometimes. It’s like when you get a bunch of people together at church and they gossip and fight with each other constantly, but if you add a new person into the mix, they’ll keep gossiping and fighting, and yet all come together to “get” the new person.
So, here’s what I wrote about what to do when you can’t get that diagnosis.
Sometimes I have a hard time entering into discussion with fellow Autistics.
I notice a trend, especially with women who insist they must be Autistic, but can’t get a diagnosis. They rant and rave about this lack of diagnosis and how they know they are, but they can’t get it.
It’s as if their lives got put on hold because they can’t get the diagnosis.
Here’s the thing, though: there’s an assumption that they must get a diagnosis in order to BE or to DO or to even EXIST. They give the psychological and/or medical establishments the power.
So, what do you do when you can’t get a diagnosis? Here are my top 5 alternatives to obsessing over a lack of diagnosis.
1. Read Works by and for Female Autistics
To be honest, most of us start here anyway, and it’s the logical choice. Authors to look for that can help you to learn if you “belong” are Samantha Craft, Cynthia Kim, and Tania Marshall. There are others, but these three are women-focused and tend to have lists. They’re great gateways for you to discern whether you belong or not. Many of these authors can be somewhat inspirational; yes, a lot of women get diagnosed eventually. But if you look at Marshall’s works, some never do, yet they have with them a commonality to the women who have the paperwork. The threshold, remember, for getting into the female Autistic guild (and yes, other people use tribe, but it makes me uncomfortable because it makes me feel like we’re co-opting a word reserved for use with First Peoples) isn’t to get paperwork; we’re born Autistic, and some of us are simply better than others at “passing” when it’s time for diagnosis or presenting as if we’re exhibiting other conditions. That doesn’t mean we’re not Autistic (if we are, we are); rather, it simply means that for whatever reason that practitioner didn’t see it and/or actively hid the diagnosis. And yes, sometimes they will hide a diagnosis “for your own good” and I blogged about that here. This is why we cannot allow the gatekeepers so much power because some will abuse it. Focus on whether your childhood was similar to or dissimilar to those who came before you. They are the real experts.
2. Sit with the Autistic Kids in the Cafeteria
You are not alone. Beverly Daniel Tatum’s Why are All the Black Kids Sitting Together in the Cafeteria? is a phenomenal book. Go read it (it should be common in libraries). This book does a great job of looking at the Black experience (and she tries to talk about other cultures, but admits she doesn’t know as much) which may sound “backward,” but as she does it, you can consider also how your experience of being Autistic can be similar (an different from) the experience of being a minority based on race. A pivotal image I have is how the Black kids in the title sit together because there is a time in our lives when we have to be with people “like us.” And if we don’t do that in high school, where it is common, we’ll probably do it in college or when we hit the workforce. Does sitting with the “Autistic kids” online help you to live your day better? Do we learn tips and tricks in navigating a neurotypically-designed world by sitting at the Neurodivergent table? Absolutely. You don’t need a ticket to learn executive function strategies.
3. Read Alternative Histories
Everyone told you to read Neurotribes. You did that (if not, go do that; it’s on Audible, too, so that’ll help if reading longer books is hard). Don’t stop there. Howard Zinn’s The People’s History of the United States (there’s a teen version if you do not want to read the big book, of course) is a great place to start. I personally like The American Indians in Children’s Literature blog by the amazing Debbie Reese (https://americanindiansinchildrensliterature.blogspot.com/) because I’m into children’s and YA literature. What I like about reading about First People’s voices is that they have the perspective that they’re not a minority per-se, but they are a group of sovereign nations located within the United States. In other words, they’re like immigrants who never left their native countries. At the same time, they have the reality of living within the borders of another nation that doesn’t “get” them and has been outwardly hostile to them. I think this can be comforting to Autistics who can’t get a diagnosis because there’s a reality you function within, and people who accept you as one of them, and yet, certain gatekeepers actively thwart your efforts to really uncover your identity and those gatekeepers shouldn’t even matter, and yet they have unspeakable power. If anyone gets that, it’s Indigenous cultures. The more you learn about efforts to “gaslight” minority cultures, races, and religions, the more you can see you’re not alone. The more you see that, the easier it gets to take the power back from the gatekeepers.
Start writing. Start your own blog if you want. Record your thoughts in audio or video and share them or not. The more you write, concretely, about how you see the world, the more chance we get Autistic voices like yours into the universe. Why is this important? Think back to Samantha Craft or Tania Marshall, both of whom write extensively about what fellow female Autistics are like. The more we amplify their work in our own voices, the more we can break through the barriers for others. We ourselves may never get a diagnosis, and that’s okay (really!). This is a long game. If we can’t get for ourselves, we want to get for the future generations. That is what being part of a minority culture is (and, if you’re Neurodivergent, you’re in a minority culture, specifically a subset of Disability culture…surprise!). So tell your story. Amplify the stories of those with whom you identify. We will not be silenced! The more we write about our culture, the easier it will be for those outside of our culture to identify us.
5. Be Creative
Part of being Autistic is being creative. So you can’t get services without a diagnosis. To be fair, a lot of us are too “high functioning” for services anyway…seriously. Your house falls apart, they can theoretically take your kids because you’re Disabled (HAH, not having the label can help there!), and you can be chronically underemployed, but…you will still be deemed as too functional for services even with the label in many cases. Many of us have been experts in figuring out how to get by without help; we’ve had to because we didn’t know we were Autistic. Check in with adult Autistics and keep abreast of all the new research starting to come out as the first recognized generation reaches old age. We all must learn from them because we’ll be there, too, some day. Learn tips and tricks, like how Temple Grandin and Cynthia Kim talk about exercise as the only thing that really kept the anxiety away for them, or various systems that work for executive function.
And know, too, that if they “give you services,” they own you. If you WERE to qualify for Disability-supports, they can limit your income, restrict how many cars your family can have, and look into every aspect of your life. When you choose how to live your life, you are in control. You can be as quirky as you want to be…because you’re calling the shots. So if diagnosis is only about perceived “helps,” know that those helps can actually Disable you, not empower you. I am not saying do not take services and/or funding if you need them; however, if you have been able to live your life without them, you may well be better off continuing to do that, even if it seems easier to “go on Disability,” it is not. It is a very hard path; it is just a different path from NOT being “on Disability,” no matter what you hear from politicians and on Facebook.
However you diagnose, welcome to the community! We Neurodivergent females are sisters, and if we are there for each other, then it doesn’t matter whether there’s a label or not. We define who we are. Never forget that. And if you find other communities you belong to within the neurotypical population (or, at least, the general population, where you do not feel “Disabled” for being different), hold onto those places. For me, it’s the Catholic educator community (at least, the subset of people who are religious and love being able to share the joy of Jesus and Mary with others; not those who were there because it was “easier” than public schools). I fit in there and feel more authentically myself. For you, it might be a group that’s, say, passionate about Spanish-style cooking (or whatever your “thing” is). Be with that group, too. That’s where you’ll find the neurotypicals who will help you when you have questions that the Neurodiverse community can’t answer, and they’ll answer them readily because they care, not because some government bureaucracy paid them to “fakecare.”
Don’t ever, ever let the medical and psychological “industries” define you.
One last thing: I’m not saying you should take medical malpractice (and hiding a definition or not knowing what Autism in females looks like is malpractice) as being A-Okay. I’m all for fighting the good fight and working through the complaint channels (etc.)…but don’t think the diagnosis is magic. Be authentically you with or without the medical community stamp of approval. There…there is where the magic is.