There is a tsunami of adult autistic trauma out there. We need your help.
I was just diagnosed with ASD (Autism Spectrum Disorder) in December of 2022, a few weeks before my 58th birthday. I wrote about what caused me to seek this diagnosis here. I’m rather new at this stuff, and I’ll be blogging quite a bit about various aspects of it as I go along, reading and learning and wondering what this means for me, as I suspect that quite a few other people are experiencing a similar thing.
Check out my autism category for a list of relevant blog posts, and never forget that 1) I’m just one person, writing about my personal experiences with a thing I only just learned I had. 2) No two people on the spectrum are alike. 3) I am not a medical or mental health professional. 4) I’m not attempting to write a one size fits all autism advice column.
Recently discovering that I have been walking around for nearly 6 decades with autism has given me a completely different perspective on my past, present and future. At first, my ASD diagnosis had me feeling euphoric. Finally! Answers! Vindication!
But the more I learn about my condition, the more reality is setting in for me. I don’t think I realized how profoundly everything in my life would be impacted by this new understanding. I wish I had more support, but services for adult autistics are very thin on the ground.
That really surprises me, because there are an estimated 5.4 million autistic adults in America alone. Despite searching online for hours, I couldn’t find a breakdown as to how many of those were diagnosed as children, how many were diagnosed as an adult, how many suspect but aren’t pursuing a diagnosis, and how many of us are wandering around feeling broken and confused and clueless about autism, like I was a month ago.
Naturally, I feel for that last group the most. Not understanding the why of things can be really isolating and upsetting. Having answers is such a relief, but it’s a bit of a double-edged sword. The majority of us who have managed to fly under the radar this long are most likely highly intelligent and relatively functional, so it would be easy for mental health professionals to assume we don’t need help. But I’m here to tell you that I really, really need help. Here are some of the issues that I’m dealing with.
I’m finding the acceptance process to be similar to that of mourning. I have good days and bad days. There is anger and depression for sure. I haven’t exactly experienced denial or bargaining, but I have no idea how I’m going to feel from one moment to the next.
Sometimes I feel joy because I’m finally finding my tribe, and the more I read about autism, the more I understand about myself. Other times I feel the harsh reality of the prejudices people have about autism, and how those prejudices affect me on a daily basis. One loved one no longer speaks to me, and I’m guessing that’s because she is not willing to discard the drama queen lens through which she has always viewed me. It’s a shame, because she’s the only person left who might be able to give me answers about things that I’m wondering about from my childhood. So in that way, it really does feel like I’m mourning someone I love.
It also feels like I’m meeting myself for the first time. I’m not sure who my authentic self is anymore. After a lifetime of masking my symptoms in an unconscious attempt to fit in, I’m no longer sure what is real. All of that is a lot to unpack, and I am mostly having to do it all alone.
Dear Husband has been extremely supportive and willing to listen, though. In that I’m extremely lucky. He has read quite a bit on the subject, too. But this is essentially one of those you-had-to-be-there scenarios, and I’m happy to say that he’s never had to be there before. I’m having to deal with a lot of guilt because of the extra burden this places on him, too, although he’s never said so. He’s willing to go there with me, but I’m sure it wasn’t in his original 5 year plan.
Looking back at my childhood through the lens of autism is clearing up a lot of confusion for me. The extreme effort my mother put into trying to get me to make friends felt like torture to me at the time, and ultimately it didn’t work, but I can understand why a mother would want her daughter to be more “normal”. To be clear, she never made me feel like I was weird. Society needed no assistance on that score. I just wish she had been able to talk to me honestly about how atypical I was, because then the “what’s wrong with me” battle that raged within me wouldn’t have felt quite as lonely, and maybe I wouldn’t have felt like such a failure at life. But little was known about autism back then, and I’m sure she did the best she could.
Services for autistic adults are, as I said, practically non-existent. I was on a waiting list for 6 months before I was finally evaluated, and now I’m on yet another waiting list to get help from the University of Washington’s Adult Autism Clinic. They told me it would probably take a year. Meanwhile, I’m barely sleeping because wave upon wave of new perspectives about my past keep crashing over me, and I feel like I’m having to tread water.
The need for these services are not going to go away. As autistic children “age out” of the services they now receive, what then? Do they get to fall into this crack with the rest of us? And the more adults get diagnosed, the more they’ll talk to others, many of whom will attempt to seek a diagnosis as well. You might say that adult autism is a growth industry.
From a capitalist perspective, it stuns me that there is such a potentially lucrative unmet need out there, and no one appears to be making an effort to fill it. Hence my desperate plea to future mental health professionals. We need you so badly.
I’ve seen so many therapists who did not spot my autism and sent me on wild goose chases that did not result in any healing or answers. I am trying to find a counselor who takes my insurance and has experience with autism. But so far they’re either not accepting new patients, or they don’t take insurance and want to charge anywhere from $150 to $250 per session, which makes them well out of reach to the majority of us. I’ve also looked for support groups, and they are, indeed, out there. For an equally high fee.
I know I’ll get hooked into the system, however flimsy it may be, eventually. But I’m struggling right now, and crashing into brick walls at every turn. Advocating for myself is stressful and exhausting. I cannot imagine how someone who is even less functional would be able to handle it. I’m sure many give up in despair.
There is a tsunami of adult autistic trauma out there. If you don’t believe me, check out this YouTube video by Orion Kelly about Autism and Self Hatred. It’s heartbreaking to hear this man suffering so profoundly. He does videos about autism on a regular basis, and they’re raw and vulnerable and honest and enlightening. But this one, in particular, is gut-wrenching.
Even if you don’t have time to watch his video, I urge you to scroll down on its page and read some of the 1,442 comments that it has garnered at the time of this writing. Being autistic can come with a lot of baggage. Spending so much time trying to be something you’re not while trying so hard not to be a burden is stressful and exhausting. That in turn causes health issues.
So much pain and loneliness, frustration and anger, confusion and depression is out there. We as a society shouldn’t be wait-listing all this trauma. If we want our communities to be mentally healthy, we need to meet these needs.
Speaking only for myself, I wouldn’t want to be cured even if I could be (and by the way, I can’t). What I want is coping skills and support. I want to feel less alone and more capable. I believe I can achieve that and still be me. But I need help.
I have this fantasy that someday there will be a clinic without a waiting list. This clinic will provide counseling, even to those who are self-diagnosed, and especially to those who cannot afford it. This clinic would provide prompt evaluations and teach life skills to those who need them. It would provide and/or host support groups, and, since we’re dreaming, here, it would even have a quiet, warmly lit café/library to hang out in when you’re feeling misunderstood and overwhelmed. Perhaps it should be called an adult autism community center, which leaves room for all sorts of services and opportunities.
Those of us who find ourselves in the lost generation of adult autistics have been neglected our entire lives. On the whole, this neglect was unintentional. Nevertheless, it happened. Imagine how devastating it is to discover that, even after a diagnosis, that neglect will continue.
We need you. Please don’t forget us yet again. We still have a lot of living to do. Most people, whether they’re on the spectrum or not, just want to live their best lives.
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To say that the dust has yet to settle is putting it mildly.
I was just diagnosed with ASD (Autism Spectrum Disorder) in December of 2022, a few weeks before my 58th birthday. I wrote about what caused me to seek this diagnosis here. I’m rather new at this stuff, and I’ll probably be blogging quite a bit about various aspects of it as I go along, reading and learning and wondering what this means for me. I suspect that quite a few other people are experiencing a similar thing.
Check out my autism category for a list of relevant blog posts, and never forget that 1) I’m just one person, writing about my personal experiences with a thing I only just learned I had. 2) No two people on the spectrum are alike. 3) I am not a medical or mental health professional. 4) I’m not attempting to write a one size fits all autism advice column.
I’m barely one month into my Autism diagnosis, and to say that the dust has yet to settle is putting it mildly. As a friend of mine said, this is a major sea change in my life. I naively expected the waters to be more calm, but I’m learning that sometimes they can be very stormy indeed.
So many of my friends and loved ones have been accepting and supportive. I’m really grateful for that. And I have a newfound appreciation for them, because I can be a lot sometimes. I always knew that, but I don’t think I fully comprehended the extent of my “differentness” until now. Being around me probably requires more patience than I care to admit.
I’ve been observing myself closely this past month. I’ll do something, and then I’ll ask myself, “Do other people do that? Have you ever seen anyone else do that?” And more often than not, the answer to both those questions is no. “That” could be anything from farting with impunity in public to running my hands through my hair when I’m nervous. It could be laughing when others don’t, and not laughing when they do. It’s definitely being bothered or delighted by things that other people don’t even seem to notice.
I guess I thought that the diagnosis would be The Answer. The answer to everything. And yes, it has provided me with a lot of pieces to the puzzle that I wish I had gotten decades ago, but it’s not as if anything has been “solved”, as in, “Okay, we’re done with that thing. Now we can move on.” Diagnosis does not equate to closure.
I can understand why so many adults don’t bother getting an official diagnosis. Much of the autistic community seems to accept people who self-diagnose, so why bother? There are plenty of books to read and groups to join, so many of us can still figure a lot of this out without professional intervention of any sort. And, I mean, we adults have managed to muddle through for this long, so it’s not like a diagnosis is mission-critical.
But for me, this diagnosis has helped me figure things out. For example, I’m starting to accomplish more, because I’m breaking tasks down into smaller pieces. I still plan out the entire task, but then I focus on the first step, then the second, and so on. I’m not as likely to be overwhelmed to the point of paralysis that way. That’s a good tool to have in my toolbox.
I wanted an official diagnosis because, silly me, I thought having something in writing would make the more hesitant people in my life believe in its authenticity. “See? Here’s proof. I haven’t been having tantrums all this time! I haven’t been acting confused to somehow manipulate you.”
But no. Not so much. I now realize that the hesitant people are heavily invested in the lens through which they’ve always viewed me, and just as with Trump supporters, no amount of facts are going to make them see the light. It makes me sad, but I don’t know why it has come as such a shock.
Another thing that I didn’t expect was how uncomfortable it makes people to talk about my diagnosis. If I bring up the subject, then clearly I’m comfortable talking about it, and I am hoping people will ask questions. But most people seem to squirm, especially if I’m talking to them face to face. That, too, shouldn’t have surprised me, because I now realize that I would have reacted the exact same way prior to my diagnosis.
The unknown makes people very nervous. And it’s astounding how few people know anything about autism. It’s a hard disorder to define, because there are so many potential aspects to it, and so many degrees of intensity for each of those aspects. No two autistic people are alike. Since that’s the case, autism doesn’t fit into a neat little box. It can’t be described in an elevator speech.
And I’m having to confront the fact that I’ve carried around my own prejudices about autism. I thought that most autistic people were incapable of empathy or emotion. I can’t speak for everyone, but it’s more like I feel so much more than most people that it often overwhelms me. I’m not some automaton. It’s as if my nerves are jangling so rapidly that their motion can’t be seen with the naked eye, but believe me, I feel them. I’m here. And there’s a lot going on beneath the surface. I’m only just now realizing that not everybody feels this way.
I’m thinking of making a t-shirt that says, “Autism. It’s complicated.” Hmmm. Maybe I could sell them.
I’m only now starting to realize how few services are available for autistic people who have only just discovered this about themselves late in life. Naturally, the focus should be on autistic children who still have their whole lives ahead of them. I get that. But I’m not done with my life either, and I sure could use some support. I’m still working on that, but I can’t imagine how someone on the spectrum who is less verbal would be able to get past all these hurdles. It’s not easy.
I was utterly unprepared for how much of my life would get stirred up by all of this. I’m an autistic person. I don’t need to be fixed. But now that I know so much more about the how and the why of me, I’m setting firmer boundaries with people, and I’m getting mixed results.
I’ve been struggling my whole life to seem “normal.” Now, I’m saying things like, “All this noise and activity is overwhelming for me, so I need to go off and have some alone time for a while.” And, “I know you want to go to this party, but I’d rather not. Please have fun without me.” And, “I really enjoy hanging out with you one on one. Let’s do more of that.”
An exciting aspect of all this insight is that I’ve got a stronger sense of what makes me comfortable in any given environment, and what really, really bugs me. It will be interesting to see if I begin to feather my nest in a different way due to this knowledge.
Now that so many people know this fun fact about me that I’ve only just learned about myself, I can sense them watching me. I don’t think they’re worried that they’re going to “catch” autism as much as they fear that I will stop being me. Am I supposed to bulk up and turn green like the Incredible Hulk? I don’t know.
I’m still me. Yes, I’m an autistic person, but I have always been that. It’s just that I didn’t know it until now. I feel increasingly authentic. I can stop trying so darned hard. I can maybe cut myself a little slack.
Breathing room is a very precious commodity. It’s nice to have that. A door has been opened wide, and the fresh air is coming in. I’m sure I’ll have good days and bad days. But at least I finally understand that the ability to breathe is out there and within my reach. I may not breathe the way you do, I may not yet breathe the way I’d like to or the way I should, but, yo, I’m breathin’ here! That counts for a lot.
I’ve been a zebra amongst horses, but I never saw my stripes.
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”.
Not all grownups are adults. It’s such a disappointment.
When I was little, I longed to be an adult, because I figured that would mean I could do whatever I want. Boy oh boy, but I had no idea what I was talking about. Not a clue.
It’s true that grownups can do whatever they want. They can commit crimes. They can be selfish. They can be greedy and thoughtless and cruel. They can abuse the planet. They don’t have to pay taxes even though they take advantage of the infrastructure that’s provided by taxes. They can make idiotic decisions. They can disrespect their elders. They don’t have to think ahead or consider consequences or feelings or take any responsibility whatsoever.
Grownups can get away with that stuff. And since 2016 I’ve been seeing more and more grownups doing just that. It really makes me weep for the future of this planet.
But what I’m beginning to realize is that even though all adults are grownups, not all grownups are adults. It takes integrity and conviction to be an adult. It takes maturity. It requires that you realize that the world does not revolve around you. It is all about understanding that your actions effect other people.
One simple, straightforward example is the wearing of masks during a pandemic. Doing so may not be fun, but it says that you care about the people around you, whether you know them or not. And yet I’ve heard so many “grownup” excuses.
For some reason people think getting tested is some get out of jail free card. Testing negative only means you haven’t been positive for COVID-19 up to that moment in time. You can test negative and contract the virus 5 seconds later. You still need to wear a mask unless you’re selfish. And unless 100% of the people you are spending time with are getting tested every 5 seconds, the risk remains. “Some of us get tested” is just not good enough.
Another convenient excuse is, “Well, I tested negative after my risky behavior, so what’s the big deal?” To that I say congratulations and thank God. But do you want a cookie for that? Because you gambled with your life, and the lives of everyone you come in contact with. This time you won. But that doesn’t mean you always will.
People also think that if their job puts them in a high risk situation, then there’s no reason not to engage in high risk experiences while off the clock as well. That’s like saying, “I’m exposed to radiation all day at work, so I may as well get irradiated when I’m home, too.” In contrast, an adult is even more cautious at home, to reduce their odds of shortening their lifespan as much as humanly possible.
We are all under an enormous amount of stress right now, so some people believe that a little self-care by socializing with friends every once in a while is worth the risk, because it improves their mental health. Poppycock. One person dies of suicide every 12 minutes in America. That’s horrific. But one person dies of COVID-19 in America every eighty seconds. So you’re 9 times as likely to die of COVID than you are of suicide. I’d rather be alive and mentally disturbed than sane and run the risk of killing off another human being.
And what’s wrong with socializing with a mask on and 6 feet apart? Why do people have to be all up in each other’s faces, taking selfies cheek to cheek? I know it feels like you’ll live forever, but no. Death comes for us all. No need to flirt with it.
Yes, self-care is vital. But your right to self-care stops right at the line where your actions can potentially harm others, especially the more vulnerable amongst us. Adults know that. They understand that the golden rule isn’t a suggestion. They have a moral compass.
Adults also realize that other people love them and worry about them and they make decisions accordingly. Adults realize they have responsibilities and obligations. And adults know that they have to set an example for others who look up to them.
I don’t know how so many of us were never taught the importance of being an adult, and the importance of taking care of others. It’s a serious failure of society at large. I think, perhaps, that was why societies were invented, though. Societies are meant to protect us from the grownups who refuse to be adults.
We all live within a societal contract. There are rules we are meant to follow in order to experience society’s perks. It’s not supposed to be a tug of war. The contract isn’t supposed to be null and void every time you get a wild hair to cut loose. It’s supposed to be common sense.
In my county, we’re not supposed to gather in groups of more than 5. We’re supposed to wear our masks. We’re supposed to remain 6 feet apart. It’s not fun and it’s not fair and some people view this as judgmental or political or controlling rather than a matter of life and death. Those people are not adults.
Humanity is becoming more of a disappointment with each passing day. And we’re all going to pay the price. It’s all so senseless. I’m becoming so scared that I’m practically blind.
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These books first came out to induce submission in children.
I must confess that I have adult coloring books. And that really does feel like a confession to me. Isn’t coloring the stuff of children? I’m slightly embarrassed by this activity, but I find it very comforting at the same time.
In a world that feels increasingly out of control, coloring is wonderfully predictable. There are established boundaries. And while these boundaries do exist, I still get to choose how pretty to make the spaces within them. It’s my way of feeling creative without actually expending too much mental energy on it. I can get lost in the patterns and set my anxieties aside for a brief, colorful moment.
So when I came across an article entitled, “The Dark, Forgotten History of Coloring Books”, I didn’t want to read it. I didn’t want my multicolored bubble to be burst in any way. But, as is so often the case, curiosity got the better of me.
It seems that coloring books first came out as a way to induce submission in children. They were used to teach them how to behave. It’s part of the reason so many of us are loathe to color outside of the lines. Them’s the rules, after all.
The first coloring book was called The Little Folks Painting book. You can see it here. It includes lessons which are really warnings about not being disobedient. Don’t play tricks on people. Don’t be selfish. Don’t oversleep. According to the article, one of the lessons is,
“Never be discontented, never wish for anything you cannot have.”
Well, now, isn’t that creepy? By coloring, we’re being compliant. We’re being contained. We’re learning to accept the things we cannot control. By killing time in this way, we’re also not being trouble-makers. And John Lewis reminded us how important it is to make good trouble.
Even more chillingly, the article says,
“To color is to inhabit a world designed by others, to dwell in an environment where you are left with no options but to memorize what is already there… After days of coloring these diminutive dreams, I came to see the energy I spent on it as dimming my capacity to imagine how a future can be conceived and built.”
Shades of 1984.
So will I stop coloring? Probably not. Sometimes you just need to shut off your brain. But it’s crucial to remember to turn it back on.
Maybe I’ll have to come up with even more ways to make these designs my own, besides simply choosing which colors go where. Perhaps I’ll use the designs as wrapping paper for a gift. Or maybe I’ll fold them into Christmas ornaments. Maybe I’ll take the author’s suggestion and tear them up and make a collage. Or I’ll create a tattoo.
I’ve always been rather noncompliant. I don’t suspect that will change any time soon. I do believe in certain rules and regulations, simply in order to live without chaos. But I hate the idea of being manipulated in any way. So yeah, I’m apt to color outside the lines of life.
But every once in a while, it’s nice to let others make the choices for you, if only on the page of a coloring book. As with any habit, though, moderation is key. I don’t want to turn into a Stepford colorer. That would not be good.
While relaxing on my back porch the other day, with my dog in my lap and the sun in my eyes, I allowed my mind to drift in lazy spirals. Talk about the epitome of privilege. Doing nothing. If this were the 1800’s, I’d be out there chopping wood for the winter. Anyway.
Following that tangent, it occurred to me that someone had to be the first person to utter a word. Who was it? And what distinguishes a word from a grunt? For my purposes, let’s define a word as a name for something or someone or a concept. (I know that’s overly simplistic, but hey, it works for me as I bask in the sun.)
So, did some adult suddenly realize there was value in being able to name things, or was a baby’s first word the first word? If it was a baby, the word was probably some form of Ma, as it usually is. Ma is kind of the sound you make when enjoying mother’s milk. Ma is the source of food, after all, and food is critical to survival. So that’s a possibility.
But what if the first word came from an adult? What would it be? What could have been so important that it would cause one to bridge that societal gap? Perhaps some simplistic form of “Saber Toothed Tiger.” Or simply, “Run!”
Whatever the word was, I wonder if its speaker realized that this was a huge deal. By making that sound he or she was destined to change the world. Even this humble blog wouldn’t have been possible without that person.
Given our inherent selfishness, especially when faced with survival, the word could have been “mine,” or “give”. I doubt it would have been anything as complex as “love”, because how could you possibly be sure that love meant the same thing to you as it does to the next person?
Just for today, I’m going to leave my dirty dishes sitting in the sink. I’m going to eat things without worrying if they’re healthy. I’m not going to run my errands. I’d say I’m not going to exercise, but who am I kidding? I never do anyway. And yes, my laundry will remain in a big jumbled pile on the chair.
I plan to sit in the sun, if there is any, and read a book. Or take a nap. Or take a bath. Or watch Star Trek reruns on Hulu. Or all of the above.
I’m not going to watch the news. I’m not going to answer my phone. I’m not going to reach out. I’m not going to ask questions. I’m going to let the world take care of itself.
No doubt it will all be there, waiting patiently for me, in the morning.
Did you ever have a slumber party as a child? Just thinking back on them gives me butterflies in my stomach. It was always so exciting to change your routine, stay up late, giggle with friends, eat unhealthy stuff, gossip, bond, play… Seriously, why did we ever stop?
I think it would be great fun to have a slumber party as an adult. The biggest hurdle would be finding adults to invite who wouldn’t think you were completely off your nut. I think this is one of the reasons we go camping and sleep on the cold, damp ground. We aren’t willing to admit that what we really want is a slumber party.
So this week I did a little thought experiment. Every night I had a slumber party with my inner child. I indulged myself. I got comfy, cozy, ate stuff that wasn’t exactly good for me. I watched movies, snuggled with my dogs. Stayed up late. It was kind of nice, actually. You should try it.
“When I became a man I put away childish things, including the fear of childishness and the desire to be very grown up.” ― C.S. Lewis
I seem to have stumbled upon a new fad: coloring books for adults. These are books of very elaborate line drawings that you can then color with pencils or crayons. I even heard on National Public Radio yesterday that it’s become so popular that there’s currently a worldwide shortage of colored pencils!
I discovered it the other day because oddly enough, my local library was having a coloring for adults get together on one of my days off and I thought it would be fun. Now I’m hooked.
What appeals to me so much is that it’s a chance to live the childhood that I didn’t really get to live the first time around. It’s a rare opportunity for my inner child to come out to play. And yet the pictures are detailed enough so that my adult self doesn’t get bored. And it’s relaxing. I’ve always found creativity to be relaxing. Anything that causes me to focus and not think so freakin’ much is relaxing.
So here’s my very first creation.
I had planned to bring it home and put it on my refrigerator door (where else???), but then I realized that today is the 90th birthday of my very favorite aunt, so instead I sent it to her. (Waving hello to Aunt Betty, and apologizing that the picture won’t get there on time for her big day.)
I think she’ll appreciate it. I get both my sense of humor from her and also my tendency to neglect my playful nature. If it makes her smile, giving her my first coloring in 40 years will have been worth it. Aunt Betty, I hope you get to play today! I love you!
Recently I was talking to my niece, who is in her late twenties, the mother of two boys, and is working on her Bachelor’s degree. I was telling her how nicely I thought she had turned out, and that not that many years ago she really had me worried.
I’m so proud of the woman she has become. When I asked her what had triggered such a profound turnaround, she said, “I don’t know when it happened. One day I just woke up and it was like, ‘Crap, I’m an adult.’”
I’ve had those moments. I still have them. I’m kind of having one right now. I’m about to make a major change in my life, and although I want it really badly, it’s not going at all smoothly.
I want to throw a tantrum. I want to get fetal and suck my thumb. I want to hit someone with my pail, take my marbles and go home.
Most of all, I want someone to help me. I want someone to fix this. Several people have stepped up and done what they could, still others have given some really good advice, but as far as a source for a total resolution, I’m it. That is not inspiring confidence. Sometimes I feel like a little kid playing dress up.
Now is the time for me to look in the mirror and say, “Are you a man or a mouse?” My response would probably be tart and barbed, because I’m neither of those things. So I guess I’ll just have to make the best of it. That’s what adults do.
The View from a Drawbridge 