The Ladybird Way

So, you’re here. Welcome, and I’m sorry, and it is really hard, and it’s also you’re not alone.

From my perspective, as a 45-year old autistic woman not quite 5 years into my diagnosis, looking both back and ahead and at today, my autism is both a strength and a disability.

When I say my autism is a strength, I mean that I love being supersmart, and hyper-focusing on things I love, and basically being a genius at pattern recognition, and being able to learn anything (like about my own autism) from reading books, and having lots of hobbies, and being independent, and having a home that’s been carefully decorated to represent me.

When I say my autism is a disability, I mean that I always feel like I’m on the outside looking in at get-togethers, can’t make friends to save my life even though I want to, am exhausted by the pace of work (meetings and emails and so much task-switching between clients and projects), always have a medical or mental health issue to deal with, can’t sleep, and wind up shacking up with abusive partners because no matter how many times I do it I’m still naive to being manipulated.

During the work week, I’m busily holding down my job, shuttling my son to and from school and activities, and trying to stay on top of house chores. Every other weekend when my son is at his dad’s is when I catch up, meaning that I climb into my “nest” (imagine an L-shaped sofa that’s been disconnected at the corner so that the two halves can be pushed together to create an enclosed super-cushion) and watch Deadloch.

I’d love to make friends, but I just can’t (shrug). I go to events where there are other moms, and hover on the edge trying not to look at any one person for too long (my son says I stare), and smile and say “Hi, how are you?” when people make eye contact with me, but nothing ever happens. I make friends with kids, grannies and men more easily, but none of those are socially appropriate friendships. So I have my hobbies to keep me company, and art and writing classes when I have extra money.

It was my therapist who first told me I was autistic, about four years ago. It was during the last 2 minutes of our weekly session when she blurted out, “Oh by the way, I think you’re autistic.” And then she told me to read the book “Unmasking Autism,” by Devon Price. She left me shell-shocked, honestly. I had asked year several times over the years if I was autistic and she’d always say No Way! You’re not autistic. Because, until she read Unmasking Autism, she’d had the classical presentation of autism in her mind. In her defense, most mental health and medical professionals still think of the classical presentation of autism if they think of autism at all, which is unfortunate because it means that all the rest of us get missed.

I’ll tell you something about being diagnosed as an autistic woman in my 40’s—I felt/feel heartbroken. Yes, finding out I was autistic gave me an explanation for why (why did my life go the way it did) that wasn’t “I’m just a failure”, and that was validating and a relief—for about a month. Then the depression set in, and it hasn’t left. The biggest problem with being autistic in my opinion, is that there’s nothing I can do to be non-autistic. I can’t take a pill, take a class, grow out of it, or even learn my way out of it. It’s like this—I could tell that my coworkers were misunderstanding me before I knew I was autistic. Just because I now know I’m chronically understood because I’m autistic (because I provide the wrong amount of context, don’t pick up “social breadcrumbs”, don’t “grease the wheels” with chit-chat) doesn’t make me understood. It means I’ll forever be chronically understood. There has been at times a sense of hopelessness about my autism diagnosis, particularly around friends.

The classical outdated understanding of autism is of the minimally verbal, socially awkward, emotionally volatile child who requires full time care. While autistic individuals can be impacted this way, this is only one of the spectrum of ways that an individual can be impacted. You might say that there are as many unique presentations of autism as there are autistic individuals.

The updated understanding of autism reflects our knowledge that autism is a nervous system disorder that makes navigating things that require “sensing” (existing in a loud and bright world with lots of other people) difficult. Autism includes a spectrum of traits, most of which have to do with how our brains process the world around us, which means that our symptoms—and our autistic diagnosis—are invisible. In that respect, autism is for many of us a hidden disability.

Tools for Self-diagnosis

So…how do you know if you’re autistic? You must have an inkling that you’re different in some way, or you wouldn’t be here. And the experience of being different, but not knowing why, is a big clue in and of itself. A “perk” of being autistic is that we’re smart and can learn anything from reading, which means we can become amateur autistic experts and diagnose ourselves.

I’ll walk you through it—ready? I’m going to present my favorite books on autism (in women) along with autistic traits that are mentioned by the authors.

The books that most clearly describe autistic traits as they manifest in women are Aspergirls written by Rudy Simone and Is This Autism? A Guide for Clinicians and Everyone Else by Donna Henderson and Sarah Wayland. In the back of Aspergirls, Rudy Simone includes a self-diagnosis guide specifically geared towards women, and when I read it I was like—”OMG, that’s MEEEEEEEE!”

Rudy Simone—List of Female Asperger Syndrome Traits pgs. 230-231 of Aspergirls.

Aspergirls by Rudy Simone is sweet and brutally honest at the same time, and written as a survival guide for autistic teens and women. Rudy compiled a self-diagnosis guide based on her observations of autistic girls and women. It’s the most relatable way of laying out women-specific traits that I’ve come across. To support Rudy and her advocacy efforts, please obtain the full list by reading her book. To give you an idea of what to expect, the traits I identified with most are:

Related to my own sense of self and personal style—I dress how I want, and prioritize being comfortable, being “me”, and not spending a lot of time looking good for other people. I’ve never felt like a “real” woman, and don’t care about traditional woman things like hair, make-up, dresses, attention. In fact, I hate attention. My daily uniform of jeans and a hoodie accomplishes all of the above, and I like the way dressing like a teenaged boy helps me fly under the radar.
Books play a huge role in my life. I taught myself to read when I was very young, and have been reading every since. I read as an escape from life, as a way to experience things that are hard or impossible for me (romantic relationships, being a male FBI or CIA agent), as a way to get advice since I don’t have a partner or close friends (parenting advice, work advice, health advice), and as a way to learn. I love collecting books, and seeing them displayed on my bookshelves. They’re like old friends.
I’m supersmart but take more time to process things, especially when it’s new information or involves someone’s feelings. When I don’t get enough time to process something that happened or was said before I have to go right into the next thing or the person keeps talking, I get overwhelmed and shut down. This is made worse by what must be a verbal processing disorder. I can’t track a conversation when it’s verbal only and I need to take notes to understand things, which takes a lot of time and annoys the other person. I find I have blanks spots in my understanding of the world, especially when it comes to people and relationships. It feels like somebody will say something, and my brain lacks the code to process it so I come up blank (and this is reflected in a blank expression on my face.)
I’ve never been able to make close friends as an adult, and I don’t know why. I had lots of friends growing up, but I lost my childhood friends when I went to college and never made new ones. Part of the problem is that I don’t relate to “girly” women. I get along easily with kids, men and people older than me, but none of those are appropriate friendships. I want to have friends, but I always just get the feeling that I’m different, and potential friends can sense this difference, and are put off by it. I don’t know, it’s not something you can ask someone. when I do chat with people, at work or at my son’s school, I can tell that I say things that are slightly “off” because my intention is misunderstood. I’m not sure what I’m saying wrong, though. The whole situation with relationships and friendships make me feel pretty hopeless.

If you like this, read next: 22 Things a Woman with Asperger’s Wants her Partner to Know.

Donna Henderson and Sarah Wayland—Is This Autism?

Is this Autism by Donna Henderson and Sarah Wayland was originally written to educate clinicians on the updated view of autism, which includes the myriad less (visibly) obvious ways autism presents in women, who have been socially trained to camouflage our traits. But then the authors realized that everyone needs this education, and expanded their audience to all of us—including us autistics and those around us. Part I walks through autism’s role in reciprocity, nonverbal communication, relationships, repetitive or idiosyncratic behavior, flexibility, intense or atypical interests, and sensory differences. Yo support the authors and their advocacy efforts, please consider reading their book. To give you an idea of what to expect, the insights I identified with most are:

What makes autism so dang hard isn’t so much that it limits us from doing things—having friendships, having relationships, holding down a job, raising kids—but that it takes away our ability to do these things intuitively, meaning we spend SO MUCH MORE EFFORT doing the same things as our allistic peers because they’re doing things instinctually while we’re analyzing our way through them with our prefrontal cortexes. And because brain processing differences are invisible and difficult to explain, we can’t convey how hard it is to other people. So we feel burned out, isolated, and misunderstood.
It’s depressing and a huge blow to a person’s self-esteem to know that they are different, but not know exactly when or what they are doing that’s different, and know there is nothing they can do about it. The chapter on reciprocity—all the little things allistic people do to build connection with each other—gave me some important clues. With people I love, I’m sensitive and observant, overly so my ex-boyfriend and son would say, and pick up on the slightest change in demeanor and immediately ask ‘what’s wrong’ or ‘what happened?’ But if you’re not in my inner circle, my brain has no idea what to do with you. Honestly, no clue. The whole business about chit-chat and social breadcrumbs just feels so…inefficient and pointless. Apparently for allistic people, going back and forth about meaningless things is part of the build-up to friendship, but I’ll tell you I get nothing out of that except tired and annoyed. Those exchanges always fizzle out for me. Why can’t we just agree to be friends and launch right into a discussion of something mutually interesting to both of us?
My facial expressions are confusing to other people because they’re often not reflecting what’s going on in the current moment. When the pace of life is slow enough for me to keep up, and I’m hanging out with someone I’m close to, and nothing is too intense, my face is “normal”. When something is funny, I laugh and smile, and it’s genuine and I don’t have to think about it. When something hurts my son, I feel sad and frown, and that too is genuine and I don’t have to think about it. But if there’s a lot going on and I can’t keep up, or I can’t understand something, or I get overwhelmed then my brain takes over trying to process everything and the face for that is blank face. Sadly blank face can be really hurtful to other people, who perceive it as cold and uncaring.
I suck at mental flexibility. Even though I pride myself on being a creative thinker, about my own problems, especially emotional ones, I am a black & white thinker in that I try to find the perfect solution and if there isn’t one, then I think there’s no solution. Accepting an imperfect solution would never occur to me (hence the reason for developing the “best value” approach to solving unsolvable problems) and so I get stuck in loops of this doesn’t work / there’s no way to change it. Of course I need routine in my life because this makes life predictable, which means I can prepare for it (the illusion of control), and one of the types of predictable routine I like is having a set of rules that we all agree to follow. Unless I’m reading literature, which I know includes figurative language by definition, I interpret the things people say literally. My ex-boyfriend used to get upset at me for something, then say “I can’t do this anymore,” and I would (helpfully) say, okay then do you want me to help you pack? This was incredibly painful for him, because he took it to mean I didn’t care about him. I felt like I was just respecting what he’d asked for.

Donna Henderson and Sarah Wayland—Is This Autism?

What makes autism so dang hard isn’t so much that it limits us from doing things—having friendships, having relationships, holding down a job, raising kids—but that it takes away our ability to do these things intuitively, meaning we spend SO MUCH MORE EFFORT doing the same things as our allistic peers because they’re doing things instinctually while we’re analyzing our way through them with our prefrontal cortexes. And because brain processing differences are invisible and difficult to explain, we can’t convey how hard it is to other people. So we feel burned out, isolated, and misunderstood.
It’s depressing and a huge blow to a person’s self-esteem to know that they are different, but not know exactly when or what they are doing that’s different, and know there is nothing they can do about it. The chapter on reciprocity—all the little things allistic people do to build connection with each other—gave me some important clues. With people I love, I’m sensitive and observant, overly so my ex-boyfriend and son would say, and pick up on the slightest change in demeanor and immediately ask ‘what’s wrong’ or ‘what happened?’ But if you’re not in my inner circle, my brain has no idea what to do with you. Honestly, no clue. The whole business about chit-chat and social breadcrumbs just feels so…inefficient and pointless. Apparently for allistic people, going back and forth about meaningless things is part of the build-up to friendship, but I’ll tell you I get nothing out of that except tired and annoyed. Those exchanges always fizzle out for me. Why can’t we just agree to be friends and launch right into a discussion of something mutually interesting to both of us?
My facial expressions are confusing to other people because they’re often not reflecting what’s going on in the current moment. When the pace of life is slow enough for me to keep up, and I’m hanging out with someone I’m close to, and nothing is too intense, my face is “normal”. When something is funny, I laugh and smile, and it’s genuine and I don’t have to think about it. When something hurts my son, I feel sad and frown, and that too is genuine and I don’t have to think about it. But if there’s a lot going on and I can’t keep up, or I can’t understand something, or I get overwhelmed then my brain takes over trying to process everything and the face for that is blank face. Sadly blank face can be really hurtful to other people, who perceive it as cold and uncaring.
I suck at mental flexibility. Even though I pride myself on being a creative thinker, about my own problems, especially emotional ones, I am a black & white thinker in that I try to find the perfect solution and if there isn’t one, then I think there’s no solution. Accepting an imperfect solution would never occur to me (hence the reason for developing the “best value” approach to solving unsolvable problems) and so I get stuck in loops of this doesn’t work / there’s no way to change it. Of course I need routine in my life because this makes life predictable, which means I can prepare for it (the illusion of control), and one of the types of predictable routine I like is having a set of rules that we all agree to follow. Unless I’m reading literature, which I know includes figurative language by definition, I interpret the things people say literally. My ex-boyfriend used to get upset at me for something, then say “I can’t do this anymore,” and I would (helpfully) say, okay then do you want me to help you pack? This was incredibly painful for him, because he took it to mean I didn’t care about him. I felt like I was just respecting what he’d asked for.