Landing on the Spectrum: I’ve Always Been Autistic. I Just Didn’t Know It Until Now.

I’ve recently landed on the autism spectrum. Though I’ve always been here. I just didn’t know it. But now I do. And it’s made all the difference.

For those of you out there who actually know me, some of you won’t be at all surprised that I am autistic. Others will be very surprised. I suppose it comes down to which sides of me I’ve allowed you to see. How much I’ve let my guard down around you. How comfortable I’ve been in your presence. Last fall, when I told my sister of my suspicions that I was autistic, she said that that explained a lot about me during our childhood. Yup. I could almost see the light bulb turn on over her head. Erin, I adore you. Thank you for your life-long patience and tolerance. And I’m sorry that I was such a difficult sister.

So, I’m 45 and I only recently had it confirmed that I was autistic. This was world-changing for me, but probably not in the way it is for most people. For me, it was like I was focusing a camera lens and the world finally became clear. My entire life finally made sense. My weird behavior as a child. My awkwardness and rarely fitting in. My reactions to the world. My expectations of others. But the journey to reach this understanding was very long. And it was very short.

Like many women who find out in their 40s that they are autistic, it started with one of my kids.

The Start of My Path to a Diagnosis

Ever since I heard of Asperger’s, many years ago, the term seemed comfortable. It felt familiar and seemed to fit me, if only on a subconscious level at first, unlike its much more encompassing cousin, autism. I know that Asperger’s is no longer a separate diagnosis according to the DSM V, and that using the term is now thought of in a bad light by some (with good reason—see my note at the bottom of this post), but I’m telling my story as it unfolded, and, at the time, the term was part of my self-discovery.

When my son was little, he played in a way that was familiar to me. Orderly. Logically. I didn’t question it because it seemed so normal. It didn’t occur to me to have him tested for anything, because he played with toys the same way that I had. A couple of people close to me disagreed that there was nothing unusual, so I eventually took him in for testing. This was soon after the DSM V came out, but much of the testing material still had separate evaluations for autism and Asperger’s. My son didn’t make much of a mark on the autism scale—at least how we were interpreting it at the time—but the Asperger’s side was crystal clear: he easily qualified for that diagnosis.

Once he was diagnosed, I read and read and learned a lot about autism and Asperger’s. As an involved mom and a homeschooling parent, I felt it was imperative to learn how to best approach raising and teaching my son. But the more I read, the more it felt like I was looking into a mirror. The more things resonated with me. The more I felt that the books and articles were describing me. The me that didn’t quite fit in with everyone else. This realization, this gradual lifting of a weight, lifting of a veil from my eyes, caused me to keep digging.

I started taking notes, looking at what I was reading with myself in mind. I started re-examining past events in my life, actions I took, behaviors I exhibited, that I hadn’t thought about in decades. Things I was teased about, things I tried to hide because people thought they were weird. And I looked at plenty of other things from adulthood, too. All of these were described in the autism books I read.

I also started taking online autism tests. Some were pretty superficial, but others were more in-depth. They all basically said the same thing, that I have significant autistic traits but also a large amount of empathy. These were generally tests designed for males, so I did have to take it all with a grain of salt. But my hyper-empathy—along with my intelligence—is what has helped me mostly fit into the greater world.

I then started reading books on autistic women, specifically, and how females often exhibit different autistic traits from males. More light bulbs went off over my head. I had pages and pages of notes by this time, both from my readings and from my recollections. Very slowly, it felt like dawn was approaching. Like, wow, can this be for real? By the time the picture came into focus that I, too, was likely autistic, I felt so validated, and I finally felt free. It was such a relief to read about how I was probably not an anomaly in the world, that what I experience on a daily basis, and what I’ve rearranged my life to accommodate, isn’t rare. It’s common. It’s just been vastly under-recognized, especially for women, and especially for people of my generation and older. But I still didn’t have confirmation from a professional, so I held back.

My Childhood and Adulthood

I always knew I was different growing up, but I thought I was just uniquely weird. I attributed my personality to a combination of being intelligent and just being me. I didn’t know that some of what I was going through was a more common experience. And, though I never stopped being weird, as an adult I’ve been able to arrange my life such that my weirdness isn’t a handicap most of the time. By the time I got well into adulthood, I’d mostly learned to navigate this complicated world, though there were still lingering effects of not fitting in too well.

As a kid, I never quite fit in and rarely found anyone I completely clicked with. I probably seemed very awkward to other people. I acted strangely at times (which is only clear to me in retrospect), saying the wrong thing frequently, and having my motivations misunderstood (I didn’t even understand them). I was endlessly tormented in elementary school and junior high, but thank goodness for my super nerdy magnet high school. I never felt like part of a group. I always had a handful of friends, but never felt like part of something bigger while I was growing up. I was regularly excluded, often the last to be picked, even when I was good at something. I felt on the outside, almost constantly. I wish I could go back in time and explain to Little Jenny just what was going on in her/our head.

As I grew, I slowly learned to adapt, get along, and navigate the tricky world of the neurotypical. I’d long forgotten about some of the ways I used to be when I was younger because I’d found workarounds or had just suppressed those parts of myself. My good grades and constant friendships probably made teachers think that I was okay, if a bit quiet. (Almost every parent/teacher conference consisted of, “She’s doing great, with excellent grades, but I wish she’d participate in class more.”) But autism and Asperger’s weren’t something that kids of my generation got diagnosed with, so I doubt my teachers were really looking for it.

As time went on, I had to learn adaptations and accommodations for myself the hard way. I had no one to compare notes with. A book I read described it as going through life in hard mode. Society just wasn’t set up for people like me, but I had to make my way through it and figure out how to survive. And to thrive, if I could. In some ways I did thrive. In other ways, not so much.

Even as an adult I would be occasionally excluded for no given reason. Sometimes I found groups of people who included me and I felt at home with. But that was the exception rather than the rule. Especially socially. One time I formed a book club with some women I knew where we took turns choosing the book. A couple of books in, the club just stopped meeting, right after we read and discussed a book I had chosen. Or, at least, I thought the club had stopped meeting. In reality, they had just formed a “new” book club that didn’t include me. These weren’t my people. I would have to find my people elsewhere.

Even people who loved me didn’t understand me, but some of them tried, really hard. Others claimed to like or love me but were put off by my quirks and saw some of what I consider my strengths as faults. Some of them belittled me or tried to make me feel somehow less because of my autistic traits. They saw them as failings. One person even called me “broken”. But I’m not broken. This is just how my brain works. That told me more about the other person than about myself.

Fortunately, others recognize my traits as strengths and cherish me as a friend or family. Some even celebrate my weirdness. It is possible to be appreciated for who you are, 100%. I’ve had relationships before that didn’t nurture all sides of me. But for the past several years I’ve had a relationship where I am loved and cherished, precisely for my quirks and unusual traits. The same traits that annoy other people are appreciated and found useful now. I’ve never felt so validated in my life.

This complete freedom, support, and acceptance was what I needed to successfully re-examine my life, talk it out, and work to rediscover who I am, and to find all of the parts that may have been misplaced along the way. There is complete non-judgment for my mistakes and missteps, because they are all seen in the context of my life, experiences, and strengths. This allowed me to start seeing parts of myself more clearly than I ever had before, my reasons for why I do the things I do and feel the things I feel.

Now that I can see myself in an autistic context, I am working hard to remember who I was before I started hiding many of my traits from the world. It’s an ongoing process, but one which is already buoying my sense of self.

The Rest of My Path

All of this, my whole, weird, awkward childhood and adolescence, my continued struggles as an adult, made sense when I found out I was autistic. It should have been obvious to me sooner, but I never knew about autism when I was young, and at first the only types of autistic people I learned about were those that needed constant supports, not those who went to school, got jobs, and started families like I did. It even wasn’t obvious to me when my son got diagnosed. But soon the list of symptoms started stacking up and the pieces started falling into place. A larger picture was starting to form. I was autistic. Or, at least I thought I was.

I longed for an official diagnosis, though, not being content with self-diagnosis. Since one of my defining characteristics is not wanting to misrepresent myself, I had to have it confirmed by a professional. I didn’t feel that I could claim it otherwise.

But then I was paralyzed into inaction by not knowing where to start. I knew no one locally who had gotten diagnosed as an adult. I didn’t know which professionals to trust. Calling around to many of them and asking complicated questions on my cell phone that doesn’t get good signal was out of the question. Plus I had no idea what my insurance would pay for. Finally, it occurred to me that the affordable mental health clinic in town might have this kind of diagnostic service. So Rory called and confirmed that they did, and made the initial appointment. Because phone calls. And he gets better signal than I do.

I had my initial appointment with the psychiatrist in January of this year. She took down my health history, both physical and mental, and a mental health history of my family. We talked about my son and other family members who could also potentially be on the spectrum. We talked about my life-long anxiety. She read through my extensive notes in support of my possible diagnosis, which she said were extremely helpful. I had organized my traits into different categories, such as Social, Emotional, Brain Function, Sensory, and Family History. This single-spaced list spanned three pages at that point—but it’s even longer now.

The psychiatrist wondered why I would want a diagnosis, though, having gotten this far in life without one. I tried to explain to her my need to define things, to categorize things to make them make sense, and a diagnosis would help me understand myself and help others understand me better. It made the world of difference for my son to be diagnosed. It changed how I approached parenting and homeschooling him. And he benefited from that. I wanted the same for myself.

When trying to describe this to the psychiatrist, I likened it to me having very curly hair. I have curly hair regardless of whether I know that I do. Whether or not my hair is categorized as curly. But knowing I have curly hair helps me compare notes with other curly haired people, swapping tips of how to take care of it. I explained this to her, apparently to great effect, drawing this parallel to an autism diagnosis. She finally understood. She told me that it was her professional opinion that I am on the autism spectrum. I was to have a follow-up appointment in three months.

Three months later, I had the follow-up appointment, where we went over additional notes I’d made. The appointment was pretty uneventful, actually, but she reiterated her determination of my being autistic.

For middle-aged women who get diagnosed with autism these days, it’s pretty common to have a similar path to discovery that I had. You have one or more kids diagnosed, and then you start to question it for yourself. Since autism definitely has a genetic component, this isn’t a surprise.

How I’ve Coped

I’m what some call a high-functioning autistic, though many people in the autistic community are no longer using “functioning” labels now. But all this diagnosis means is that I’ve figured out ways to navigate society without most people noticing. Unless they look closely. It’s a ridiculous amount of work for me. I recently read an article that put this into words. I don’t self-harm, but it’s as if the rest of it was plucked right from my brain. Go read the whole article.

“Viewing disabilities—and mental disorders—through a lens of impaired functioning is very flawed. The fact that I am functioning does not mean I’m not impaired, or that functioning is not hard. That I can survive, day by day, does not mean that I am thriving, or that my life is as easy as it is for a neurotypical person. And the aspects of my life that are impaired are rarely visible to an outside eye.

We often don’t see a person at their lowest moments—when they are crying and nonverbal, or engaging in self harm, or refusing to eat, or isolating from everyone they love. We can’t always tell if someone is struggling to make it through the work day, or if their sleep and exercise habits have been disrupted. And we don’t know, from the outside, what a person has been forced to sacrifice in order to live a seemingly “functional life”.

A lot of us “function” because we have to.

A lot of disabled or mentally ill people are able to work a job, pay rent, and get by through an elaborate system of compromise and sacrifice. We may have abandoned career paths that were too demanding of our mental energy, or lost relationships that were too socially or emotionally taxing. We may neglect exercise or beloved hobbies in order to find the time to get work done and make the money we need to survive. We may devote ourselves to rigid schedules that allow us to be professionally productive, but make other life tasks impossible. Or we may be forced to isolate more often than we’d truly like, in order to recharge from the daily efforts of getting by.

Like many neuroatypical people, I have determined a system that works for me—and it is a system that requires letting certain things go. If I want to be able to keep the income-and-getting-fed-and-getting-sleep-and-being-happy balls in the air, there are balls I have to let drop.”

Navigating school, work, and social demands forced me to learn to compensate for many of my challenges without even knowing what I was doing. I couldn’t keep it up forever, though, so in the past decade or so I have worked hard to cultivate friendship circles and living and working environments where I felt comfortable and safe and welcome. This maximized my stronger skills and minimized the things that were more difficult for me. This has allowed me to save energy for interacting with the greater world, allowing me to occasionally mask to get things done like grocery shopping, phone calls, driving, and generally fitting into the world outside my carefully constructed bubble. I live on the edge of social difficulties, being able to be social when needed, but it’s a huge effort for me most of the time. Some social situations are worth that effort. Some are not.

When I was younger and was out there in the world more often, due to school and work, I got pretty good at masking. But it was exhausting. It still is, when I have to do it for long. But I’ve learned—without having the vocabulary for it or the foundational knowledge of what I was doing—to balance it all. It was such a relief when I had my daughter and could stay at home with her. I finally felt like I could breathe. I was barely holding it together having to work some weeks, and was definitely experiencing autistic burnout, though I didn’t know it at the time. Now I work at home, and that allows me to feel comfortable in my surroundings.

I’d never even heard of autism until I was an adult. I can’t remember when I first heard the term, but it might have been after I started having kids of my own. In many ways, I’m glad I wasn’t identified as autistic as a kid. It likely would have made my school life even more difficult. But I’ve been an adult now for 27 years, and it would have been helpful to have this context during much of that time.

Now My Life Makes Sense

As I re-examine events and thoughts and feelings and behaviors from my past, especially from when I was a kid, I’m seeing my life and my self much more clearly. My whole life up until now finally makes sense. Both the challenges I faced and the areas in which I excelled. It’s as if I have learned a new language, a language all about me. I can use this vocabulary to help others understand too. It’s so validating to know that there are words in existence to put to my experience. I feel free, and somehow lighter.

I’m not sharing my story because I want attention. I’m sharing it to be one voice among many in the autistic community who are talking about their experiences and advocating for themselves and others.

Happy Autistic Pride Day 2018!

Note: Though the term is no longer de rigueur, this post refers to the term “Asperger’s” in a few spots, because that term was part of my path. I won’t be using it again after this post. If you want to read more about why the term is no longer embraced by many, read about the recent article in Molecular Autism entitled “Did Hans Asperger actively assist the Nazi euthanasia program?“, Nature‘s article “The truth about Hans Asperger’s Nazi collusion“, and the LA Times‘s article “Hans Asperger’s complex Nazi history“.