Why Was My Autism Missed?
In an earlier episode, I told my own story of being diagnosed autistic as an adult in my 30s, after my young son was diagnosed. I received many questions about how I didn't know I was an autistic girl when I was younger, and why no one at home or school realized.
Being diagnosed as an adult is actually really common, and many people are diagnosed much later than I was. It can be hard to see autism sometimes, especially with autistic girls, and even more so in the 1990s when I was at school.
Read to find out more about why I think my autism was overlooked for so long, and what families and schools can look for now to make sure no autistic girls are going without support.
If you're interested in learning more about neurodiversity in general, or in reading more about autism, ADHD, or sensory processing challenges specifically, here are some of my favorite books!
Why Was My Autism Missed? Being an Undiagnosed Autistic Girl in the 1990s
Today, I want to do a little bit of a different post from what I've been doing recently. I want to talk a little bit more about why I wasn't diagnosed until I was an adult.
Why This Topic?
I did a podcast pretty early on in Neurodiverging's life, I think it was like my second podcast. That was about how I found out that I was autistic in my early 30s after my first child was diagnosed autistic.
I got a lot of feedback on that episode and a lot of it centered around this question of, "Why didn't anybody notice you were autistic until that late in life?" and, "How could I not know, personally, that I was autistic until that late?"
I just want to say, early 30s is not that late to be diagnosed autistic. Plenty of people are diagnosed in their 50s or 60s or 70s. But, obviously I wasn't diagnosed as a child either. And I think there was a lot of feedback regarding, well, how was I missed as a child?
So today I would like to talk more about that, about why I wasn't diagnosed as autistic until I was in my 30s and just how that happens.
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My Son Was Diagnosed at 2. I Was Diagnosed at 31.
If you haven't had a chance to listen to my earlier episode about being diagnosed as an adult, by the time my son was diagnosed, he was just a little over two years old.
My diagnosis at that time was not a surprise to me. I had felt that I was different from a lot of people for most of my adult life. I was also pretty sure my son was different.
Pretty early in his life, around when my son was two years old, I was pregnant with my daughter and I was really starting to fall apart emotionally. I think I talked about this more in that other podcast.
My son was difficult to parent. I was exhausted all the time from the pregnancy and I had no real internal resources left to deal with anything else going on. And I was just falling apart.
I had done a lot of research on autism in the process of figuring out what was going on with my son. And the more I read, the more I was pretty sure that I was autistic as well.
Why Did I Seek A Diagnosis?
A lot of the problems I was having in my day to day life were based in my autism. The more I read stories of autistic people, their blogs and their information online, the more sure I was that this was the case.
I also felt like personally, for myself, that it would have been irresponsible to just assume autism based on my own research without through a professional, who had seen more autistic folks than I had met in my life.
Other people might not want to do that, but I just felt like I wanted to be sure that it was autism before I just assumed and went forward with that.
One I went forward, I was diagnosed as autistic. I was not surprised by that. But, I did find that a lot of my family was surprised. And a lot of people have since asked me why I wasn't diagnosed earlier. I think I've thought about this a lot. I think there are a lot of reasons.
Why Wasn't My Autism Caught Earlier?
It's hard to know exactly why I was missed over, but I thought today I could talk about a couple of possibilities for why I wasn't caught as a child or even as a teenager, and maybe what folks today might be able to do better to catch children and autistic girls who are not being served by current screening tools and medical tools.
The first thing that I think that is the most important about my specific case is my family. Without going into too much kind of personal detail, I am 85% sure that we have undiagnosed autism and undiagnosed ADHD in my immediate family, and also in my extended family.
There's always a chance that I am wrong about this. I am not a medical professional. I am just a lay person. But I do think that there's autism in other folks in my family.
2. Family Culture
I also think when you have a bunch of people together who all fit the same neurotype, even if it's a less common neurotype like autism, it's easier to view the way you think and your strengths and weaknesses as neurotypical, because you just don't see real neurotypical strengths and weaknesses in your life.
You see what your family is doing, right? They are your basis of of comparison for everything else you're seeing.
I saw a lot of what's normal for ADHD and autistic brains while I was growing up, but I don't think that I necessarily saw a lot of what's normal for neurotypical brains.
With that context, it was really hard for me to notice that I was "different." And, it was harder for my immediate family to notice that I was "different," because I wasn't different from them. I was just different from other people. That's not as obvious.
I think in that context, I got along fine with my parents and my siblings and with most of my extended family, I'd say about as well as anybody gets on with their extended family.
But I did have trouble making friends at school and in the community. If anyone else in my family had been diagnosed with ADHD or autism, my weaknesses might have been more obvious to my parents and my teachers, and maybe some testing or some other interventions would have been considered.
But because I believe my family is neurodivergent in a couple of different ways, my weaknesses didn't particularly stand out to us. They were similar to what the rest of my family was doing. In some ways, I feel really lucky that I wasn't the odd one out in my family, but I still felt like I was the odd one out in school.
Growing Up as an Undiagnosed Autistic Girl
That feeling of not fitting in grew as I got older. I still sometimes feel like that today, even knowing myself so much better than I did 20 years ago. Especially, the more complicated the social situations I was put into became,the more trouble I had, the harder it was for me.
When I got to college, I managed to basically luck my way into a group of women who were just amazing oddballs, and I just clung to them. We were such a group. If I hadn't bumped into those people, I don't think I would have made any friends in college.
I had a lot of trouble creating friendships once I got out of college, and I still have trouble making and maintaining friendships today, except with other neurodivergent people. That goes on fine, but I have trouble with neurotypical people.
The longstanding neurotypical friends I have put up with a lot of my stuff really well. But, I don't know that we're as close as we could be just because I am bad at neurotypical social cues, and I miss a lot.
What About School?
One major reason that no one caught me earlier is because I didn't particularly stand out as having a different neurotype to my parents. Another huge reason is that I didn't particularly stand out in school.
Nowadays, I think that most kids who are neurodivergent, who are autistic or ADHD especially, are caught in the school context. That is, if you're lucky, and you're in a good school with enough funding, and all the privilege that goes into a good school.
You have special educators who are familiar with what ADHD and autism look like. You have teachers who are noticing when students are struggling and are better able to connect the dots about why that student is struggling and what might be going on.
I understand that is not this way for a ton of people, but in a kind of an idealized school environment, you know, you do have those resources that were not available.
When I was growing up in a public school system, I didn't particularly stand out in school. I did well, I got good grades. I did not pick fights or cause trouble. I was a rule follower.
Nobody had any reason to pick me out as somebody who was struggling, outside of the fact that I had difficulty with social cues, which was obvious to everyone. (I'm so much better at it now and it is still obvious to everyone. So think about how much of a deficit I had twenty years ago!)
I just looked like a weird nerdy kid, as opposed to a struggling kid. There are always a couple of weird, nerdy kids, right?
It it is kind of frustrating that nobody could see where I was struggling, and so I've thought about why people couldn't see that I was struggling.
I think there are a couple of potential reasons no one could tell I was struggling. One of those is my masking skills.
One thing that the research has come to realize is that women with autism and autistic girls are either better at masking, because of what women's social circles tend to look like versus men's, and how women are trained to socialize differently and to talk to each other differently than men are trained.
But also, I was really good at masking from pretty early on, and I wasn't doing it on purpose. I just knew that some of what I thought or said didn't go over well. I didn't know why, necessarily, but I knew that I could alter my approach, and how I went into social situations to get better results.
So, that was what masking was for me. It was, "How do I approach this situation to get what I need out of it without alienating people?" It was never, "Let me go make a friend." It was, "Let me let me attempt to talk to this person without them getting mad at me for something that I don't understand!"
Focusing on the Work
I held it together pretty well at school. Like I said, I was a rule follower. I did my work. I kept my head down. I was social when needed, but I was very much focused on work, and I'm like this to this day.
When I'm working, I'm working! I'm going to do the job. Any interruptions to that are going to disrupt my work.
I'm not good at that socializing at work. I just can't do it. It's interrupting the whole reason I'm at work! And I was like that at school too.
If I was working, I was working, and I didn't really want to participate in some of the social stuff that other kids wanted to do. That was weird for other people. I get that. But, being at school was hard for me to do, unless I could mask and I could just put my head down and do the work, and hope to not be rude, or what was perceived as rude.
That got me through the school day.
Sensory Meltdowns and Shutdowns
When I got home after school, I would go outside and I could get some quiet alone time, climb a tree or go in the garden or walk around. I would watch TV and chill out and reorganize myself.
After all of the input at school, I had some tantrums and meltdowns that I remember as an early tween and teenager. But, I don't think they were obviously related to sensory overload at the time.
I didn't connect it, personally, myself, as a 13, 14, 15 year-old, that some of the bigger emotional load I was feeling when I got home was because I had been suppressing at school.
My parents were often not home right when I got home, so I don't think they saw it either. Even if they had, I don't know that they would have connected the dots, because I hadn't connected the dots. The meltdowns weren't obvious meltdowns to myself or my family.
As a younger teenager, I was often depressed and disorganized. But, I think we all just put it down to hormones and growing. We didn't manage to link it to anything else. That was normal at the time, and maybe even normal now, that a lot of teenage emotional issues are hormonal.
Those hormones are real. They affect different people differently. My family could have done a better job in linking some of that stuff together if we had the resources we have now. But ,at the time, I really don't think that anyone overlooked anything in that kind of sense.
I don't think it was like a cry for help that was missed. I think it was thought to be pretty normal for a teenage girl to sometimes be depressed, or go on crying jags, or just have trouble managing emotions.
I still don't even know: Was it because of being an autistic girl? Or, were my meltdowns just because I'm especially sensitive to sex hormones? Who knows?
Hiding My Vulnerabilities
I was also really good at hiding things that I had trouble with. Not in a sneaky way, but I wanted to follow the rules and I wanted to do a good job.
I still, to this day, am one of those people who has to be talked out of following the rules, even if the rules are useless and don't help anyone. I want to do a good job. I want to work to my capacity. I know that I'm able to do a good job in most situations, so it hurts when I can't do as good a job as I want to be able to do.
However, even when I was a kid, I knew I had trouble organizing my own tasks. I procrastinated so much. I had trouble getting started on schoolwork, and I wanted to do well. So, I did enough work to get by.
I was often doing school work in the cafeteria before class started, or on the bus on the way to school in the morning. I was also one of those people who stayed up really late the night before a project was due.
In retrospect, I obviously had (and continue to have) a ton of executive dysfunction issues, but nobody recognized them for what they were at the time. I don't really know how common the understanding of executive dysfunction was at the time - this was in the late 1990s.
I was at high school then. People knew what ADHD was, but did they understand enough about the brain in that time period to understand executive dysfunction in that context? I really don't know!
But, I know that I didn't recognize it as executive dysfunction. That wasn't a term that came into my knowledge until about 15 years later. So, I don't know that teachers were particularly well versed in that either at the time.
What all this led to was that, instead of understanding that I had a different brain and some executive dysfunction issues, instead I internalized the idea that I was lazy, and not trying hard enough, because I knew that other people didn't have as much trouble getting started and maintaining focus as I did.
It wasn't an issue of me not being smart enough, or not understanding the material. I understood the material really well. I was often in advanced classes, especially for English, writing, and reading.
I participated well enough in class. I had good ideas. I was just really bad at turning in good work consistently and on time. I lost papers all the time. I didn't know when things were due.
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This will not surprise anyone else if you're listening, if you're an autistic girl: I had a couple of special interests as a teenager that took up a ton of my time and energy. And I had a lot of trouble redirecting energy away from those interests and towards boring things like schoolwork.
I still, as a grown adult with children, have trouble remembering on certain days, especially if I'm having a bad day, that I have other tasks to complete. If I'm in a project, I'm in that project until you come drag me away.
My kids will come and be like, "Mom, it's lunchtime, come get us lunch," because they're wonderful children, and because otherwise, they know that I might just sit there for another half an hour working on the thing I'm working on.
When I was younger, it was the same. It was really hard to redirect energy away from whatever I was interested in and towards schoolwork.
Who cares about schoolwork? Really?
A High School Book Worm
One of the special interests I had was that I really loved to read when I was a teenager.
I still love to read. I usually have about four books going at once, and when I was younger, I would routinely read 2 or 4 young adult books a day.
Remember the Boxcar Children books, and Nancy Drew, and Trixie Belden? I would churn through those. When I was in the thick of a reading spurt, I would just blast through them.
I read almost everything that I was interested in our very small town library by the time I was in high school, and I got my mom to start taking me to the larger regional library, which is a little farther away, but it had a larger science fiction and fantasy section. It was just so much better!
I would very happily spend four or five hours a day reading. I read on the bus at school. I read on the bus on the way home from school. I read during my lunch hour and then during class, if we had free time. I often read for a couple hours before bed.
So, focus, in general, was not an issue for me. Focus, in general, is still not an issue for me. Focus on the thing I'm supposed to be doing, over the thing I'm interested in doing, has always been an issue for me.
Structural Reasons Women Autistics Aren't Diagnosed
Now we've discussed some of the personal reasons that I wasn't caught earlier in life. But what about the structural issues?
I was in high school in the late 1990s, and although there was some movement towards autism awareness at the time, it was pretty small. Here are some common myths, still pervasive, that impeded my diagnosis as a young adult.
Autism Means Intellectual Disability
Autism in 1999 basically meant Rainman: having some obvious oddities in your social interaction, stereotyped speech patterns, having some kind of savant ability, a developmental delay or an intellectual disability.
Nowadays, we know that only 40 to 50 percent of autistic folks have a form of intellectual disability, but about half of autistic adults are of average or above average intelligence. And, most autistic adults don't have any savant ability.
Of course, there are some who do, but I've never met one, so I don't believe that they're very common. It's much more common that there are people like me, who are pretty smart, and can mask well enough to get along in most neurotypical social situations, even if it's not ideal for our mental well-being.
We're verbal or hyper verbal, but we suffer from a lot of executive dysfunction, sensory overwhelm and trouble with neurotypical social skills.
Autistics Are Boys or Men
In the 1990s, the vast majority people diagnosed autistic were men and boys. When I was growing up, no one was looking for a relatively intelligent, rule-following, nerdy, little white girl when they were looking for autistic traits. So, no autistic girls were diagnosed. Diagnosticians weren't even looking for people struggling with basic executive functioning skills.
A lot of students who weren't successful with executive functioning skills, like time management, handing in work in on time, remembering to bring lunch or lunch money, remembering which days were gym and which days were health, were considered either lazy or daydreaming, head in the clouds, depending on how generous the teacher in question was.
I remember when I was in middle school and high school, people kept trying to get me to use day planners. I would immediately lose them or not bring them with me because I didn't like carrying extra stuff, or I would not write in them when I did bring them with me. Or I would bring them and not have a pen to write with, etc.
There was no backup to the day planner. If you could not remember to do the thing, and you couldn't keep a day planner to tell you to do the thing, there was no other intervention to help you with time management.
I hope this is all conveying how little understanding there was of neurodivergence being a part of you and how you're built, as opposed to something you're doing wrong, in opposition to the neurotypical people.
So Many Autistic Adults Are Still Undiagnosed
In the past couple of years, as I've met more and more autistic people in my own community and online, I find that my experience is not that rare among people my age. There are so many people in their 30s, 40s, 50s or 60s who are just finding out that they're autistic, and just realizing why they've felt different for their entire lives.
Usually, like me, the autistic traits that caused them the most trouble in their lives were well-hidden, or not recognized by larger society as being problems or concerns. I wouldn't be surprised if there are a lot of ADHD women around my age, too, who have only recently been diagnosed.
Of course, there are men who have slipped under the radar, especially, nonwhite men. But it's only so recently that the medical communities have accepted that women can be autistic, and that women's autism can look very different from men's autism, that there are still a lot of women undiagnosed.
Plus, we still know very little comparatively about how autism presents in women and nonbinary people, since most of the studies that have been done have included almost completely male participants.
Then and Now
So there are personal reasons that my specific case was overlooked by myself and my teachers and my family. But there's also a lot of structural things going on that caused me to not even be considered as a potential autistic girl when I was a kid.
I'm not going to say that nowadays is better for everybody, because obviously it's not. There are still tons of autistic kids and autistic girls who are not getting the resources and the interventions that they want or need, who are not getting support, whose families are not getting the support that they want.
But, I do think that there is generally, in America, a better understanding among more people of what autism is, and the diversity within autism. I think a lot more people are outspoken about their autism.
We have like more "out" celebrities with autism. When I was growing up, there was Temple Grandin, and that was it. Now I can think of 10 people off the top of my head who are autistic and out about it. And that's huge.
It's still not enough, but it's a huge difference. And some of them are women, too, which is great!
I also think that teachers are better educated about autism than they were able to be when when I was younger. Teaching is a completely different profession now than it was when I was in high school, in terms of what kind of education you have, and what you have to specialize in to teach - that's a whole different conversation.
However, there's a better chance that someone like me would be picked up in a school system nowadays, if it was a good school system with special education teachers, funding, etc. But I still don't know for sure, honestly, because it did take me a really long time to figure it out myself.
Autism is so diverse. And, the way women are trained in a lot of ways prevents us from being noticed when we have issues in school like autism, ADHD, executive dysfunction issues, etc. A lot of women, a lot of girls, are taught to be quiet, put their heads down, do their work, and that's changing, too. I'm certainly trying to do better with my kids.
Autistic girls are less likely to be noticed in the classroom than boys are when boys have more "traditional" autistic traits. I hope that's changing. I think that people are more aware of it as a problem than they were when I was a kid anyway.
I hope this helped you think through what it's like to be diagnosed as an adult, and what you can be doing in your community to support younger children, especially autistic girls and non-binary youth who may not be noticed as they're struggling.
Please remember we are all in this together. We all have to do the work to make this world a better place for everybody with a neurodivergence.