I wasn't diagnosed as being on the spectrum until after my second child was born and my life fell apart. Why are so many autistic women misdiagnosed or not diagnosed at all? Hear my story.
How I Was Not Shocked to Learn I Was Autistic As An Adult (In My 30s!)
As someone who's neurodiverse, I believe that we need to be talking to our communities, to folks with the same diagnoses as us. We are the ones who have the inside info on how to work with our strengths or those of our families, and we can help each other.
Talking to other people who are like me gives me a broader understanding of what's possible, what works and what doesn't, and maybe most importantly, seeing other people who are just like me can go a long way toward making me feel less alone.
I really want to offer that to you, to be of some help and support to you, wherever you are in your personal journey. We're in this together. Welcome.
So this is still early days, but my first episode was all about neurodiversity. If you're new to the concept, you may want to check that one out because it's good groundwork for my general approaches to life and parenting and organizing myself and everything.
But today I thought it might be helpful to tell you more about my own personal journey and what kinds of issues I deal with as an autistic person. Like many women my age, I wasn't diagnosed until pretty well into adulthood after my kids were born.
I grew up in a pretty quiet rural area with my parents and my two sisters, and I was loved and supported but largely left to my own devices. I was really introverted, liked reading and horses and watching science fiction and nature shows on TV and spending time outside watching wildlife and learning plant names.
And I went to school and I was a decent student. I got good grades, but I had a bad habit of doing assignments at the very last minute. Like I was constantly working during lunch for my English assignments, which was like the next period after lunch. That kind of thing.
And I was super disorganized. I kept trying to do planners and just couldn't carry them around with me. I would lose them, I would lose papers, I never developed any systems that worked for me through all of high school. Also I had a really hard time finding friends that I really clicked with and I was way better with adults. I was fine with teachers, I could not handle my peers hardly at all.
I was super awkward. I didn't really understand how fashion worked - I still don't really understand how fashion works, does someone want to explain to me how fashion works? Didn't do super well in free play situations where I had to choose like who to play with or what I was supposed to be doing.
There were a lot of places where I did not excel. I had a lot of challenges as a child, but in retrospect I think I slid under the radar because, well I was a girl and girls are like notoriously underdiagnosed for autism spectrum, for ADHD, for tons of neurological differences. But also I was really lucky to be able to self-select how much sensory input I got at home.
And I was allowed a lot of access to things that I found calming, like reading and being outside. And even though I didn't love the school environment, I really loved learning and I thrived on routine.
I was smart enough to fudge most of my work and get an okay grade. And again, in retrospect I was often exhausted and burnt out, but it seems like it read to my parents as like an anxious or a pessimistic streak rather than like a neurological difference or what turned out to be a set of neurological differences.
So then you know, I got through school and I moved to Philadelphia for college and honestly I did really well there. I could select topics to study based on my own sort of obscure interests and I could create a schedule that worked with my own needs.
So I wasn't constantly overtired or stressed out. Grocery stores and entertainment was open almost all the time so I could adjust all my errands to like my abilities that day.
Because my abilities vary day to day. Like a lot of neurodivergent people, there are days when I kind of look normal and then there are days where I can't, I just can't, nothing happens. I can't do anything.
So it was nice to live in a city where everybody's routines varied because everybody, you know, worked different shifts or whatever. And so there was always stuff open and if I needed to go out at one in the morning, I could just go do that.
It wasn't like something that was difficult, access to things like groceries weren't, wasn't as difficult. And I also loved how many different kinds of people there were in Philadelphia.
It was the first place where I met people I clicked with. And later I found out that a lot of them were neurodivergent like me, but at the time that wasn't something that I was really aware of. But it was the first time I really made friends that I wanted to spend time with as opposed to feeling like I was supposed to want to spend time with people.
So it was a huge, a huge step. And you know, my, I, like I said, my interests can be obscure. I am not ashamed of that. I ran through a ton of different liberal arts degrees before I landed on the one I stuck with. And some of the ones that I like took semesters in or really got a lot of courses done in were things like English, history, religious studies, anthropology.
I was really interested in Classics, I did a lot of German and Latin. I was really interested in people and it's kind of funny to me now, but my, you know, my go-to response when people asked me about my degree or about my courses or why I kept changing my mind was that I was really interested in understanding how people create community around self identity.
And there's tons of different ways to do that. Like tons of different study tracks, I mean, to do that. So I knew that I didn't understand how most of the people I talked to everyday worked at all. It was something I was aware of, though I didn't really have a good sense of why I didn't get it.
So anyway, I lived in Philly for, I don't know, eight years or something. And then I started dating the man who is now my partner and we moved to Colorado so that I could go to grad school. Our first baby was born about a month before I graduated from my program.
And since my partner was lucky enough to have a good job and since childcare costs in Boulder are I think like way up in terms of the most expensive in the country, (they're really, really high), we decided it would make more sense if I stayed home with the baby until I made a final decision about my career path.
My son was really wonderful as a baby. He was so cute and happy and I loved him so much, but he was, he didn't sleep at night. He slept really well for naps, but he did not sleep at night.
I was nursing, I was exhausted all the time. I had trouble leaving the house because I got kind of overfixated on like the sleep schedule and the nap schedule, trying to make his night sleep better. And I just kept us in the house all the time because I was so tired and I didn't want to miss his nap or make his nights worse and I had a lot of anxiety about whether I was parenting the right way.
This was more when he got a little older, when he was a little goofy baby, I didn't worry so much. But the older he got and the more I had to start looking at basic, very basic discipline strategies and teaching strategies, I was really anxious about what's the right way to do this? There must be, you know, how do other people know how to do this?
And then around a year-old we had a series of really significant ear infections that we could not kick. We also started noticing some definite developmental delays. And I was pretty sure relatively early on that he was autistic.
But because of the ear infections, we couldn't really tell if some of those delays were because he couldn't hear us. Because he still has, he had really significant speech delays and he still has some articulation issues because he couldn't hear anything for like a year.
And he missed all this kind of development opportunity because he couldn't hear the words we were saying. So right around the same time I got pregnant again, when my son was about 13 months old, and this pregnancy was hard. I was sick, I was nauseous all the time.
I was taking care of my son and trying to, you know, grow a new baby. And I was like, I just wasn't doing great. Then when I had my daughter again, she was a pretty happy baby, but I was just doing terribly. Like it really started to kick in.
When I had trouble with my son, I just thought, you know, the first year is going to be hard and then he's going to be a toddler and he won't be nursing as much and sleep will get better and it will just get better.
And then when I had my daughter and I was still having trouble parenting my son and I was just like, this is not getting better. Like, what am I doing wrong? This is not getting better. I was constantly overwhelmed, I was exhausted. I had more meltdowns and shutdowns and mutism than I'd ever had in my life before.
And I didn't know what these things were because previously in my life they'd come up occasionally but not with any kind of frequency like I was seeing now. My partner and I had no idea what was going on with me. And we started to have a lot of trouble in our relationship and I felt like maybe I was just a bad parent. Like maybe I was just not cut out for this parenting thing.
And then finally when my son was about two and a half, we were able to get him diagnosed as autism spectrum disorder. I want to do another podcast about that part of our journey in more detail because I think the diagnosis process is kind of mysterious and often a mess, honestly.
But I was not surprised at all by the diagnosis and I kind of sought it out so that I could get him into speech therapy, which he really needed after his ear infections.
Even before his official diagnosis, I really thought that he probably was autistic. At that time had started reading everything I could about autism and the autism spectrum.
Like a lot of people, I had previously thought of autism in the context of a person with a certain set of characteristics, like someone who was nonverbal or had limited verbal abilities, someone who had a lot of repetitive motions or movements, restricted interests, sometimes limited self care abilities, or being like kind of cold or not emotional, like all the stereotype types you hear about autism.
A lot of that was just because I didn't know anyone at the time who was autistic or who was out about being autistic. I'm sure I knew autistic people who are not like “obviously” autistic, but I just didn't know that.
And anyway, the more I started reading and especially once I found resources from people who actually are autistic as opposed to from doctors in medical professions who are citing studies that were like done in the 70s or the 50s. It's like we know a lot more than we did in the 50s. Can our understanding of autistic people evolve too? Like that would be great.
Anyway, once I started finding more resources, I realized that the phenotype was a lot broader and there are huge ranges in what symptoms have here and how often and to what degree. And there was just a lot of diversity among the autistic people.
I know. Right. What a shocker. It was a shock for me at the time though, I just didn't have the background to have realized this. Like I said, I didn't know anybody who was obviously autistic and out about it at the time.
Doing this research for my son really blew open some doors for me. Once I felt like I had a handle on characteristics of autism and boys and just how I could best support my kid, I was seeing more and more research about the genetics of autism.
I started thinking more about my family and my relatives, especially older relatives. Then I started to think about myself and I had a lot of the characteristics my son had, but certainly not all of them.
But I had a lot of trouble in areas of my life that didn't seem to be sources of trouble for other people. Like all these things my whole life that I had been like, why can other people do this and I can't figure out how to do this. And it was like, ah, I could be on the spectrum too.
Could I be on the spectrum too? The vast majority of research we have on autism at this moment in time has been conducted on boys. And usually on white cis boys in America and Europe to be super clear. So that's, a lot of it is very good research, but the populations they're looking at are limited populations.
I also just want to note really briefly that I'm using the word autism here as a shorthand, but in this case I'm using it to encompass autism spectrum disorders and Asperger's, which may or may not be similar enough to be lumped together. There's a lot of controversy. That's a whole other thing.
So just for this moment, I'm not trying to make a judgment on whether autism and Asperger's are the same thing or not. I'm just sort of trying to refer to the research that is in existence because a lot of it did lump those things together. And current diagnostics do as well. Whether that's a good idea or not, again, is up for debate, a lot of debate.
But anyway, we're getting more information about how autism presents in different communities and different kinds of people. But as of this minute, there still isn't a ton of research on autism in girls and women especially, not research with a large population.
All the, a lot of the research is like 10 people, which is great but is not a, yeah, a diverse population. There is more research now than there was even five years ago when I was looking at this. And hopefully by the time you're listening to this there's even more research.
So I was really interested to find out that there are a ton of autistic women who are roughly my age in their early thirties who weren't “caught” in their school years because we don't look autistic by the standards you use to identify autistic boys.
Experiences vary widely, but a lot of us are highly sensitive to external stimuli or have other sensory difficulties, which is certainly one of my main kind of features personally. And a lot of us are diagnosed with depression or, and or anxiety really before realizing we're autistic. A lot of us are, are misdiagnosed early.
I was, and I think almost every autistic woman I've ever met in real life got either a depression or an anxiety diagnosis before somebody looked at autism as a possibility.
And sometimes the misdiagnosis can be really damaging, just depending on the person and what's going on. And a lot of us, especially women who are autistic, can memorize social scripts and deploy them sort of correctly, but we're a little off and neurotypicals notice it is hard to make friends.
And a lot of times like we can tell from your reaction, the neurotypical's reaction that we did something wrong, but we do not know what it was.
And since we don't get kind of literal feedback, it's hard for us to learn where we were inappropriate or incorrect or whatever happened. Stuff that's a much more direct and kind of less complex for neurotypicals is, is stuff we have to mimic as opposed to do automatically. If we're, if we mimic wrong, you know, you guys notice. So it's just, it can be really hard to make friends.
A lot of us also just become exhausted in social situations because we're constantly trying to mimic a lot of social situations don't allow us to be our kind authentic cells. And I don't just mean parties. I mean things like hanging out with one friend for a couple hours or working a shift in a busy store or having to go to the mall to buy pants, real life example and shutdown afterwards.
I just like totally shut down, it looks different to different people, but I just totally cease to function appropriately after that. And shutdown is something I think I would like to do another thing on in the future, but depending on the person, it can look like zoning out or napping, even falling asleep from the outside. So it's not always obvious as a sign of autism as it should be.
Like even professionals will often not like ask you how often you're napping and think that that has anything to do with anything except maybe how much sleep you're getting a night. But like lots of napping can be a sign of like shutdowns and that could be a sign of autism. So it can just be tricky to find us, I guess if you don't ask exactly the right questions.
This is a general sense, as they are in boys. So again, just a different set of kind of diagnosis criteria for most girls versus most boys. And we still don't have a great sense in the scientific community and the medical communities don't really have a great diagnosis criteria for catching autistic girls.
They definitely catch some of them. I think they catch more of them now than they did when I was a kid.
But there's still a lot of kids kind of slipping through the cracks anyway. The more I looked into it and read about the experiences of other autistic women many of them found out they were autistic after a family member was diagnosed.
And the more I realized, wow, I'm probably autistic too. It explained so much about why the stress of having young children affected me in the specific ways it did.
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It exacerbated specific types of symptoms like meltdowns and shutdowns. Honestly, it's not like I figured out what was going on and it fixed everything. But just knowing what was going on and that I was autistic gave me the ability to look back at my life and no longer feel like someone who just didn't have a clue.
My brain works fine. It just works differently. There's a reason I can't do all these things that everybody else can do. It doesn't mean I'm lazy and stupid and all these other unkind words that we call ourselves in bad moments.
I learned all about sensory processing disorder, which was like a huge light bulb moment. Just knowing it existed and how it worked helped me improve my life almost immediately. So I just want to say this is part of the reason I wanted to start this podcast.
Finding people like me who are like neurodiverse, people sharing their own stories, it brought me so much relief and help and support during this time of my life. Medical websites with lists of symptoms did not help me personally. Hearing from real people in the community did. And I really, really hope that this story can be helpful to somebody out there going through a similar situation.
I think that I'm going to be moving on to more sort of informational episodes in the future. I don't want this to be like my personal stories all the time, but I think that knowing where the voice is coming from can be really valuable and you know, just getting a sense of, of what I've been through to get here.
Also just how much knowing who you are and that your brain is different can really make you a healthier person. It doesn't fix things, but it changes your outlook in a way that can be hugely beneficial. I can't really overstate how much just knowing has helped me.
Thank you so much for listening and being here with me Neurodiverging. As always, I welcome any feedback or questions and I love to hear your stories, if you're willing to share. Show notes and a transcript are available on my website, which is neurodiverging.com. I'm also on Patreon at patreon.com/neurodiverging and if you would like that is a way that you can support this podcast and my ability to work more on it. Thank you for listening today.