On June 11, 2022, I was sitting in the balcony of Seattle’s Moore Theater with Dear Husband. On stage was Hannah Gadsby, one of my favorite comedians. (If you get Netflix, I highly recommend her specials called Nanette and Douglas.) I had no doubt that I’d enjoy the evening. What I didn’t realize was that she was also about to radically change my life.
One of the many things Gadsby talks about in her routines is the fact that she was diagnosed with autism in her late 30’s. Before that, she had absolutely no idea. She just thought she was “a little out of whack”.
The first time I heard her say that, it shocked me. How is it possible to be so different and not realize something is up? Did her family not see it? Her doctor? (And if you click on no other link in this post, click on this one: It’s Hannah’s description of her autism and how she’s come to terms with it.)
But I’ve come to realize that if your mind works in unique ways, you assume that everyone’s mind works that way, too. It doesn’t occur to you to say, “Hey, when this happens in the world, this is how I react to it on the inside.”
I actually had this thought not long ago: “You mean, not everyone perceives sharp corners as lunging straight at their eyes like I do?” Fascinating. But in my own defense, how would I have known this wasn’t normal?
In this live performance, autism came up quite a bit. It has caused a lot of really humorous misunderstandings with the people that Gadsby interacts with. She tends to take things literally. The subtle nuances, the role that body language plays in communication, and the whole “reading between the lines” thing eludes her.
When she said that, I thought, “My God, that’s me.”
She also talked about what I have always called “sensory weirdnesses”. She can’t handle being in noisy, chaotic environments. She prefers quiet places with very little stimulation. Her favorite sound is that of a tea cup finding its place in the saucer. She doesn’t like to hold bits of paper in her hands, and she usually throws those things away from her, rather forcefully, even if they happen to be the phone numbers of celebrities.
Again, “My God, that’s me.”
(Well, I don’t drink tea, but I do adore my solitude. One of my favorite sounds is a page turning in a dusty old library book. And I don’t throw things away forcefully, but I confess I can’t wait to put things where I decide they belong, and quite often that happens to be the nearest trash can. No, I’m not OCD. My life is full of clutter. But everything has a plan. Unfortunately, that plan quite often makes no sense to anyone but me.)
Hannah also talked about the importance of routines in her life. She likened herself to one of those granite stones they use in the sport of curling. She said she does just fine if she has a set destination, and is allowed to quietly and slowly glide there. But if anything throws her off course, she’s completely rattled. She actually married her show’s manager, and likens her to the person who scurries ahead of the gliding stone, sweeping the dust off the ice so that nothing blocks its way.
That sounds like the perfect relationship to me. At this point, I had to resist the urge to jump up and shout, “That’s me!!!!!”
As soon as I got home, I started doing research on autism, and in particular, diagnoses late in life. (And for what it’s worth, researching things extensively if they interest you is a trait that many people on the spectrum have. You can see that I have this tendency just by reading my blog.)
I went to websites, blog posts, YouTube videos, and I ordered several books on Amazon. In addition, I took several free online tests, and the results were always something along the lines of, “You have several traits that mean you might be autistic. We recommend that you see a professional for a formal evaluation.”
I spoke to my doctor, and she referred me to a local clinic that, thank goodness, takes my insurance and does autism diagnoses. I then contacted them, and they sent me a ton of paperwork to fill out. Then they put me on the waiting list for an evaluation. They told me to expect it to take at least 6 months.
That’s the frustrating thing about adult autism. We are low on the list of priorities compared to the children. That makes perfect sense, though. Kids have their whole lives ahead of them, and I’m sure that early intervention allows many of them to gain the coping skills that I wish I had. Whereas we adults have somehow managed to soldier on for this long, so making us wait for an additional 6 months isn’t exactly unexpected.
These waiting lists are extremely long because we older adults are the perfect age to be considered part of the “lost generation”. According to Wikipedia, even though autism was described as early as 1747, it didn’t even get its name until 1910, when severe cases were lumped in with schizophrenia. Despite all the time we’ve known about it, autism is still a complicated, amorphous disorder that is widely misunderstood.
ASD (autism spectrum disorder) was first studied closely in the 1930’s. At that time, they focused on the part of the spectrum that until quite recently was called Asperger syndrome. Now scientists include these patients in the spectrum without making distinctions. (Welcome aboard! We’re happy to scooch over and make room.)
But it’s really hard to get a handle on autism because there are so many traits that you can have, all at varying degrees of intensity. No two people will be exactly alike. It’s not like having something visible and consistent, like a missing limb. There’s a lot of fog surrounding ASD.
It has taken quite some time to determine what traits are common in autism. The first two common traits identified in the early 20th century were “autistic aloneness” and “insistence on sameness”. (I have the former trait to a strong degree, and as for the latter, while I enjoy going to new places and doing new things, what I can’t cope with is when there’s a set plan for any given day and it changes. That rattles my cage and throws the entire day off for me. Sometimes it even renders me unable to form a coherent thought, let alone articulate one.)
As proof of the foggy thinking related to ASD, in the 1950’s it was trendy to assume that it was caused by what they called “refrigerator mothers”, or emotionally frigid mothers who did not show warmth, love, or affection to their children. (When in doubt, blame the mother.) This theory was not backed up by any scientific evidence whatsoever. Still, I’m quite sure that it caused more than a few mothers to hesitate to bring their children in for evaluations. The guilt and the self-doubt must have been awful. And the stigma persists.
It wasn’t until the 1960’s, when I was born, that autism spectrum disorder was finally determined to be a separate disorder from schizophrenia. It took a while to educate the medical professionals, though. It would be another 20 years before that distinction was made official (more on that below).
As more and more professionals got up to speed with the concept, it led to a marked increase in diagnosed children in the 70’s and 80’s. People began to think that it was an epidemic of sorts. (And since cable TV also became more prevalent in those decades, and since kids do love to watch TV, there was also a silly theory floating around that autism was caused by watching excessive amounts of television.)
But many doctors, to this very day, hold outmoded beliefs about autism, and/or fail to spot potential autism in their patients. When I think of all the medical professionals who failed to spot the autism in me, it makes me weep for the person I could have been had I known. And don’t even get me started on psychologists. So many of those fine folks sent me down blind alleys that it became rather ingrained in me that I was so messed up that I could never be fixed.
It took until 1980 for the DSM-III to officially distinguish between autism and schizophrenia. By then I was in high school, and had unknowingly learned how to mask my symptoms enough to “pass” as almost normal. Kind of. I hid in the school library a lot.
Sure, I was considered an introvert, a drama queen, a manipulative brat who cried to get her way, a depressed and hormonal kid, a loner, a fidgeter, a weirdo, a brainiac, a teacher’s pet, and someone with very strong opinions and absolutely no filter whatsoever, but hey, that was just who I was, right? No big deal.
No big deal for anyone but me, that is. I was constantly crying out for help and being told I was making too much of my situation. (No, I’m not blaming loved ones. They were operating on the information available at the time. But I’m here to tell you it sucked to be me, particularly in my formative years and in my adolescence.)
I’ve learned that girls, in particular, are quite good at masking, and that the older we are, the better at it we become. We watch what other girls do, and then fake it as best we can. But it’s exhausting, believe me. (That’s a subject for an entire blog post of its own, as are so many other aspects of autism. Stay tuned.) So, in terms of anyone focusing on the autism in me and teaching me how to cope with it, that ship had pretty much sailed for me and much of my generation by the time we became adults. There are tons of us hiding in plain sight who don’t even consciously realize that we’re hiding.
The more we learn about autism, the more we are able to determine when someone is a member of this elite group. Because of this, there is this idea that autism is on the increase, and that helps prop up the many myths that claim that autism is an epidemic that is caused, intentionally or unintentionally, by Man.
One of the most pervasive myths is that autism is caused by vaccines. That destructive story was first created by Andrew Wakefield, and even he has since debunked it, but the conspiracy theorists of this world haven’t woken up to the incontrovertible fact that there’s absolutely no relationship between vaccines and autism. Nor is there a link between autism and the fluoride in water, or any of the other stupid conspiracy theories that are out there.
I suppose these theories abound because people want someone or something to blame. They also would like to entertain the possibility of a cure. And since neither of these things are being offered up on a silver platter, they’re perfectly happy to make something up. It isn’t helpful.
What all this history and misinformation has created is a massive logjam of adults who weren’t evaluated as children, and who have never felt like they fit in in a wide variety of ways. A proper diagnosis would provide them with the puzzle pieces they need to complete the picture of their lives and figure out what they want to do with this information moving forward.
Autistic people’s brains are “wired” differently from neurotypical people (which, my whole life, I’ve thought of as “normals”, and understood that I would never be counted in their number). A few of our differences, for some of us, might require certain accommodation and increased understanding, but the majority of autistic individuals aren’t longing for some kind of a cure. In fact, an increasing number of us think that autism actually has advantages. (Again, more in another post.)
But the crux of all of the above is that I was trapped in evaluation limbo for 6 months. I woke up every morning and checked my e-mail to see if I had an appointment yet. But meanwhile I continued to learn about autism.
When you talk about autism, the first thing that usually springs to mind for people is the movie Rain Man. That’s unfortunate, because no two autistic people are exactly alike. It’s called a spectrum for a reason.
(And before I get too far into the weeds here, I should point out that I’m very new to this community, so I don’t know all the vernacular yet, and I’m definitely not endowed with any expertise on this subject. If I were, I certainly wouldn’t have gone almost 6 decades without the answers I’ve so desperately needed. So I hope my fellow diagnosees will cut me a tiny bit of slack as I get up to speed.)
People seem to think that a spectrum is the same thing as a continuum. In other words, they imagine a straight line, and at one end would be “hardly autistic at all” and at the other end would be “so freakin’ autistic that you can barely function.” That’s not the case.
I can’t explain the spectrum nearly as succinctly as Rebecca Burgess, a comic artist who also happens to be autistic. You can see her entire strip on autism here, but this panel is particularly helpful:
So, if someone tells you that they’re autistic, please don’t go to that Rain Man place in your head, and only take that person seriously if she, he, or they fit the Rain Man mould. This diagnosis is fresh out of the box for me, and already a few people have said, “You don’t act/look autistic.”
Um. . . there’s a look?
But by far the most disappointing response has been, “Everyone is misunderstood. Why is it so bothersome that other people think differently than you? Isn’t that a bit of overkill?”
In other words, get over it. Snap out of it. Don’t make such a big deal out of it. I don’t take this seriously and don’t support you in any way in the face of this paradigm shift. I’m not willing to see you in a new light. Shut up and play the role you’ve always played, so no effort will be required on my part.
Why is this diagnosis so important to me? Because the more I read about the various possible symptoms of autism, the more I realize that I have so many of them that it cannot be a coincidence. Here are some of the traits that I possess that are not uncommon in people on the spectrum:
- Avoidance of eye contact.
- Difficulties in social interactions.
- Repetitive behaviors (I shake my leg when I feel stress.)
- Very narrow and intense interests.
- Resistance to changes in routine.
- Problems at work.
- Caring deeply about things that others don’t seem to care about at all.
- Difficulties obtaining or sustaining friendships.
- Reduced interest in others.
- A flat affect (in other words, my face is often blank, and people can find this to be disconcerting).
- Increased sensitivity (in my case, to noise, chaos, sharp objects, clothing labels, scratchy materials, and a whole host of other intolerances that most people find strange.)
- Picking at myself when anxious (a mild form of self-harming).
- Strong abilities in some areas and extremely weak abilities in others. For example, I can research anything under the sun and write you one hell of a story or report, but please don’t give me directions and expect me to arrive at your door without further assistance. (I lift up mine eyes to Google maps, from whence cometh my help. Otherwise I can barely navigate my own neighborhood.)
- I overshare, and I don’t realize when I’m boring someone to death. (Are you still with me?)
- I can have extreme and uncontrollable emotional meltdowns, often in inappropriate places, to the point where people think I’m unhinged.
- I can’t watch TV unless I’m doing other things at the same time.
- I tend to take everything literally and that’s how I communicate. (Say what you mean and mean what you say. That’s my policy, so I tend to assume that’s how everyone operates. This can make for a lot of misunderstandings.)
- I’m often accused of motivations that I’m incapable of having. Trust me, I’m not that nuanced. I’m devoid of subtlety.
- I’m usually the last person in the room to pick up on ironic humor.
- I’m easily distracted, but sometimes I’m so focused on something that I tune the rest of the world out.
- Often, I choose comfortable clothes over appropriate ones.
- I find it much easier to focus on the details rather than on the big picture.
So, I have at least twenty-two traits in common with people on the spectrum? If I’m not autistic, that’s a freakish amount of synchronicity. I should buy a lottery ticket.
After waiting anxiously for nearly 6 months to receive a professional evaluation, I was finally officially diagnosed with Autism Spectrum Disorder on 12/12/22, just a few weeks prior to my 58th birthday. I thought it would be a relief, and it is.
Finally, things make sense. I’ve been pressured to be more “normal” my whole life, and I’ve wasted a lot of energy trying, and failing, to do that. That has had a devastating impact on my self-esteem. Now I’m starting to realize that I wasn’t a massive failure, after all. I was being asked to do things that weren’t in my wheelhouse. It would be like asking a little person to reach up and grab something off a high shelf without providing the tools needed, or asking a whale to do the waltz.
But the things that I am capable of are pretty darned extraordinary. And now, with this diagnosis, I’m hoping to get the help that will allow me to expand my skill set. And maybe I’ll finally learn how to be comfortable within my own skin. That would be a freakin’ relief.
What I didn’t expect was that this diagnosis would also scare the hell out of me. It’s like I’m meeting myself for the first time. I’m seeing everything through a completely different lens. I’m still me, but… I’ve been autistic my whole life and didn’t know it. I’ve been a zebra amongst horses, but I never saw my stripes.
The herd has always pressured me to be more horse-like, and I’ve tried really hard, but in the end, I’m a zebra. There’s a reason why you don’t see zebras with saddles on their backs. They won’t tolerate it. It’s not in their nature. People who work in zoos don’t like dealing with zebras, because they’ll often bite you hard, and refuse to let go. That doesn’t make them bad horses. That makes them zebras who have entirely different purposes in life. They can’t conform to society’s requirements simply because that’s what we desire. But it’s nice to finally realize that there’s no shame in my zebradom.
People are already starting to treat me differently. There definitely is a stigma involved. It’s perfectly natural to be made uncomfortable by things that take extra effort to understand. I can be a lot. But I’m worth the effort.
I’m definitely more aware and appreciative of those people in my life who are true friends. They have been patient with me without even knowing why it was necessary. These friends are even more precious to me now.
I’m also realizing that there are at least a dozen people that I know and love who are most likely undiagnosed autistics, too. It’s not my place to push them towards evaluations. Some of them probably wouldn’t appreciate the massive life change that goes along with it. Some would be too afraid of the stigma to do anything about it. (And another thing I’m learning on this journey is that it’s not my job to solve every problem that I encounter, especially since not everyone agrees on what constitutes a problem.)
So for now, I’m focusing on me. I have a lot of work to do, dear reader. First of all, I have a lot of people to “come out” to. I intend to embrace my diagnosis and be proud of it, and this post will be a big help. That, and I’m terrible at keeping secrets, so I’ll find it a lot less stressful to just put it out there and let the chips fall where they may. (I bet that’s trait 23, but I’ll need to read up on it to be sure.)
Knowledge ought to be power. But it will be interesting to see if I get an increase or a decrease in blog followers after this disclosure. You’ll notice that I’ve changed my blog’s tag line to, “The random musings of an autistic bridgetender with entirely too much time on her hands.”
I am very excited for this coming year and the possibilities for personal growth that it will afford me. There are a lot of services and support that I need to link in to. There are a lot of coping skills that I hope to learn. I have so much to say about the many things I’m learning about myself and about autism in general that I’m sure I’ll be blogging about it quite a bit, mixed in with my usual random musings. I hope you’ll stick around for the adventure.
I’m also hoping that if anything I said above resonates with you, you will have a tiny bit more information to help you decide your next step on this journey of self-discovery that we call life. Some people choose to avoid discoveries because they link them to chaos. Others choose to embrace them. Personally, I believe that self-discovery is one of the many things that makes life worthwhile, so I intend to lean into this.
So off I go on a new adventure. Feel free to tag along, if the spirit moves you. Everyone is welcome. Even you “normals”.
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