So, this week, we had some “shocking” news about how Elon Musk has Asperger’s. I mean, basically the entire internet assumed as much already, but the context in and of itself was pretty tragic.
“Sorry that I’ve been a right ass, y’all, but it’s because I’m autistic”. Which, honestly, just seems like a fake apology.
I won’t really get into the love him or hate him (I suppose its obvious from the above how I feel about him, but that’s really beside the point). I keep reading about how we should be thrilled because some generally well-regarded famous billionaire is autistic and it might change people’s perspectives on autism.
Alright. So, Anthony Hopkins wasn’t good enough? Hannah Gadsby? There are plenty of famous autistic folks out there. And this particular form of autism is neither shocking nor really that great a vision of autism.
I think most autistic people can handle someone else knowing more about them about things well outside of their areas of expertise without calling them a pedophile repeatedly, afterall.
But, really, yet another socially inept, white, tech-driven, arrogant, asshole. Is that really a “positive” association with autism? Yeah, socially inept is definitely a trait of autism, and it shouldn’t be frowned upon as hard as it is, but you can be socially inept without your ineptitude mostly coming from a place of arrogance.
Perhaps I’m just being a total negative nancy, and what people will really see is that autism can lead to a strong desire to expand our space-faring abilities and work in some fashion to improve the global conditions (making electric cars cool and some bad-ass solar panels). Maybe they’ll focus on how, in spite of his practically nonexistent social skills his ability to focus on his special interests led to him becoming top of the line in his field?
But, I think I fear that people will mostly focus on his twitter snapbacks and general attitude and take it as the end-all and be-all of autism, and that those of us on the spectrum who display it in a very different way will now receive even more disbelief.
“But you don’t act like Elon Musk!”
All I really know is that I’m hoping we can get some much more varied figureheads for the autistic community. Hopefully not one that wants to create an implantable chip to cure us as if we are malignant to the world.
Temperance Brennan is an interesting character, because, of course, like most characters of her era, she is never actually diagnosed with anything. Fans say she is autistic, the creator says that they chose not to diagnose her because they didn’t want any bad mojo to impact the show because of people’s prejudices, and that she based the character off of someone she knew with Aspergers (supposedly, I’m not real hip on following Hollywood or TV news, honestly, but this was sorta what I gathered during some of my research, feel free to correct me if you know better!).
To back up a wee bit, Bones first aired in 2005, and I first watched Bones in probably 2009 or 2010. I was definitely immediately drawn into the entire show because of Temperance Brennan. Never in any show have I ever related to a character half as well as I relate to this lovely character.
Can she be overwhelmingly annoying at times? Hells to the yes. She definitely puts entirely too much emphasis on IQ being almost an actual measurement of a person’s value, which is just incredibly obtuse. But, I’m known to be a little bit of a know it all and don’t always know when to stop talking and when it is really better to just let the mild differences between what someone said and what I think or know to be true just slide on by without saying something, so who am I to talk?
In the early episodes, Temperance is brusque but damned good at her job (the best in the world, as she’d love to remind you). Her inelegancies are more than made up for by the fact that she is literally unmatched by any other forensic anthropologist in the world. And of course she is a beautiful and somewhat naïve woman, albeit very liberal in her views on romantic dalliances.
Throughout the many seasons of Bones, Temperance makes very few good first impressions on anybody (unless, of course, it is men who want to sleep with her, because you know, it looks good on TV). She puts people in their place, corrects them, often bluntly and somewhat rudely. She has no patience for fools or inaccuracies or well, pretty much anything that is irrelevant and takes her time away from doing things that actually matter (like, you know, her job).
Learning about her is a little bit of a love story in and of itself, its a slow burn. You don’t get to know her just by watching one season. You learn that as a teenager she had a special interest in anatomy and would perform dissections in the basement of her high school with road kill and that all of the other kids would bully her for it. She had heaps of family drama and spent some time in foster care (because her dad was on the run.. it’s TV drama y’know).
Over time you get past the prickly exterior and the brusque outer shell and you learn to see the inner workings of a character with an inner wealth of empathy. A woman who has untold depths of empathy for kids who are in foster care and the challenges they face and have to endure. A woman who has to be cold and look at the facts because if she stopped and saw the bones on her table as a person she would never be able to find their killer. A woman who almost never understands her best friend but always stands by and supports her anyway. A woman who comes back multiple times from once in a lifetime anthropological finds to help someone else’s career and who helps save a former intern and friend held hostage in Iraq.
Watching her deal with romance was even more enlightening for me, as it was like holding a mirror to myself. Some things came easily for her, others not so much. Letting down her guard and actually allowing herself to fall in love? That was definitely in the “not-so-easy” camp.
Somewhere in the middle of the seemingly never-ending amount of seasons, Temperance and Booth nearly have their moment for a serious relationship. Booth tells her that he is the gambler and he knows that she is the one and he wants to make this work. Temperance tries to brush it off with a casual, “No, the FBI won’t let us work together” because she doesn’t even know how to process this moment. But Booth won’t let her do that and pushes back and she breaks down and tells him that all of this time he thought she was the one that needed protecting, but the truth is that he is the one that needs protecting — from her.
Special Agent Seeley Booth : Protection from what? Dr. Temperance ‘Bones’ Brennan : From me. I don’t have your kind of open heart.
Bones – “The Parts in the Sum of the Whole” (Season 5 Episode 16)
She’s crying, and I’m crying because I can’t even tell you how much I relate to that line. I remember every single heart I have broken in my time. Each one takes its toll on me, because many of them I didn’t want to break and I don’t know how I did it or any way to prevent it. Breaking them was like breaking a piece of my own heart and each time I would get sick afterward. I started trying to come up with ways to protect people I cared about from myself, because there must be something wrong with me. I had convinced myself for a long time that I must not be worthy of love because it seemed like all I ever wrought was pain.
Over time and throughout the seasons, she slowly opens herself up to the family she created with her friends, the love she wanted but was afraid of, and even to the family she yearned for but felt she didn’t want her (her father and brother). We watch her grow and develop skills that were missing in the early seasons while still keeping her sometimes oafish blunt edge about her.
I’ve basically already written an entire book about Temperance at this point, but there are two more major quotes that I really think that pretty much any autistic person can likely relate to, but I especially do.
After the years of slowly opening herself up to the hurt that other people can (and will) cause her, Temperance realizes that she has grown beyond what she was and how she perceived herself.
For so much of my life my intelligence was all I had. I may not have had a family, but I understood things that nobody else could. My brain, the way I think, is who I am. Who I was.
Temperance Brennan – Bones – “The Final Chapter: The End in the End” (Season 12 Episode 12)
This entire quotation hits me in a way that is hard to explain. For so much of my life if you had asked me what the best thing about myself was or what my strengths were, you would pretty much only get one answer – “I’m smart”. Being smart was pretty much my identity, even though I tried very hard not to rub it in people’s faces (which is hard when you’re a know-it-all-type). And it’s true. I am smart. I have had so many people comment on it, call me smarter than they are, all of that lovely jazz. But it’s not all that I am.
I am extraordinarily compassionate, I am slow to trust and loyal to a fault, I will fight your battles for you when you aren’t sure you are strong enough to fight them anymore. I have a knack for pattern recognition and a fantastic memory, sure, but they aren’t what make me a good mother for my child, they aren’t what make me a good spouse or a good friend.
And, when her father dies, Temperance’s friends are doing kind friend things where they keep trying to check up on her. Lovely people and all.
Angela: How are you? Brennan: Everyone keeps asking me that, I don’t know how to answer that question.
Bones – “The Final Chapter: The Grief and the Girl” (Season 12 Episode 8)
Hearing this quotation, even in the context of the episode honestly made made me laugh because I have pretty much literally answered that exact same thing verbatim in similar types of situations. It’s such a complicated thing to answer in such hard situations but people expect you to be ready with something on the go.
I definitely need time to process everything and I would be much happier if people would just let me do my thing and come back around when I am ready and have processed what I feel (and maybe figured out what I feel) instead of trying to hound me about it.
So there you have it, honestly, probably a bit too in-depth, but it is what it is. I definitely love Temperance Brennan and have spent way too much time thinking about her in the universe she lives in and how I relate to her.
There are definitely more of these to come, as I have a couple of these “probably autistic” characters that have always been super close to my heart.
The title of this blog is a phrase I have now heard a few times from friends of mine who have been involved in education. At least one of them has been involved in educating autistic youth. The others mostly teaching mainstream or specials classes, so loosely involved in autistic education.
This always gets brought up as a talking point along with “autism is the new candy diagnosis, everyone has it”. “Everyone has autistic traits now! If you don’t like loud noises and prefer to be by yourself, then you must be autistic!”. It’s the new catch all diagnosis like ADD was in the 90s!
Yes, “rates” of autism are “increasing”. That happens when your understanding of a disorder increase and more studies are conducted and you realize that you have actually missed people from being included in the diagnosis. The inclusion of Aspergers into ASD increased the rates for one. Further studies into women with ASD is doing this as well. Further studies into the now bad-form “high-functioning” label are also increasing the rates. This is a good thing in so many ways. It means that people will feel accepted and they won’t feel alone.
Personally, the label was like a giant weight was lifted off of my shoulders. I cried from the relief. There are people out there who actually know what it feels like to be like me. People who actually understand me? Increased understanding and knowledge is what led to this moment of relief and people deserve to have this moment for themselves or to grow up understanding why they aren’t quite fitting in or being understood.
“Real autism is isolating”
As if we need to gatekeep Real Autism™ to only those with nonverbal autism who need higher amounts of assistance in school/work who may stim in most “normal” environments.
It is absolutely infuriating to hear someone trusted and loved diminish my own existence and feelings with “real autism” because I look normal from the outside. Because she respects me and sees things in me that make her envious. Because I fit the mold that people are supposed to achieve in life. I have a job that I worked hard for, I hit the success mark, a husband, house, kid, pets, the whole nine yards. I’m doing alright, everything is fine, right? Autism is just some weird label that they give to people who are extreme introverts now, after all.
Autism is isolating. Extremely isolating. I cannot speak for everyone on the spectrum, because the spectrum is vast and we do not all share all of the same traits and experiences but I can speak for my experiences. I come from a family that made it clear I was not to ask for help, that it would not be given and I should learn to stand on my own two feet. No support network. I had two best friends in grade school. Both of them stopped talking to me before we graduated. I stopped talking to literally everyone else pretty much as soon as I graduated. The door was shut so let’s move on, so to speak.
I have no one I could call to go for a beer after work because of a stressful day. Might be able to convince some co-workers to go to a local nearby bar after work, but that’s not the same thing as a trusted friend to blow off steam. I wouldn’t even begin to know who to call if I had to unexpectedly get someone to watch my dogs for a weekend emergency (I’d pay extra for a kennel or take them with me).
I worry because if some freak accident happened that killed or incapacitated both myself and my husband while my daughter was in school who would even pick her up while her godparents were traveling to be able to take care of her?
This isn’t to say that I’m totally friendless. I do make friends, but making friends comes at a cost that it seems neurotypicals don’t quite have to pay? I moved to a new city in early 2017 and I have focused on career advancement. I have done amazing things with my career — gotten certifications, degrees, promotions, and landed my dream job! But it came with switching companies and teams and being exorbitantly busy and socializing fell drastically to the wayside. How do normal people manage to do the career push while still gaining and maintaining friendships?
There was a time in my life when I felt like I had the most “normal” experience. I fit in, had a nice group of friends. I found my people. I still talk to people from that group regularly almost ten years later even though I don’t even live in the same state any more. I can’t even tell you what spell I cast to have this happen, it just seemed to fall into my lap. I also wasn’t chasing a career, I was complacent at my call center job.
“Real autism is debilitating.”
Again, with the gatekeeping. I don’t think I really need to point out that it’s not really for people who aren’t experts in the whole spectrum disorder to really be trying to gatekeep what autism is. It’s definitely not for someone who isn’t on the spectrum to be telling someone who IS on the spectrum that their experiences aren’t valid enough to be classified as Real Autism™.
I am soon to be 32 years old, and still slowly untangling the webs of mess of years of masking and trauma that came from not even knowing what and why I was different. Realizing that I have had so many years of training to just be the perfect paper doll of whatever anyone wanted me to be so that our interactions were easy and simple and could go away.
I was pretty much always taught as a kid that I had to avoid and resolve conflict and it was expected that I would give people the answer that they wanted, so I basically learned to do this with everyone, in all situations (guess how fucked up this gets in a lot of questionable situations…) I’ll just put on a new mask for any situation and be a perfect little chameleon as a survival instinct to get through pretty much anything.
I also realized that there are people who know and intentionally seek out autistic individuals because we are more naïve and trusting and take them based on what they say more than their actions. They are manipulative little jerks who will use you for their own gain and do not care about the harm they do in the process. It only takes one of these people to do some untold damage to a psyche.
Autism is real, no matter the support level needed. No matter how real it looks to you on the outside, from your curated exhibit view of their life. Just because you can’t see someone freaking the fuck out in the shower because they landed their dream job and that is terrifying. Or because they are driving in the rain and their husband is snoring in the passenger seat and the sound of the snoring and the rain on the car roof is causing a sensory overload that is making them want to scream and run away and pull their hair out. Or because you don’t realize that the normally verbal person is incapable of getting the words out right now and there is an entire paragraph screaming and beating against their brain burning to get out that they literally can’t let out and its tearing their brain and entire body apart. Just because your curated view looks intact and fine, doesn’t mean that it’s not Real Autism™.
As a parent of a nearly 6 year old autistic girl, I can personally say from experience that one of the harder things for me, personally, is identifying the difference between a tantrum or a meltdown. Especially since these two behaviors need to be treated totally differently.
A tantrum is happening as a result of things not going her way and needs to be disciplined. Parenting 101, we all know this, right? Basic stuff. Important to make sure that I raise a decent human who isn’t entitled and will play well in society with others.
A meltdown is different. It can look like it’s happening because something didn’t go her way (but it’s actually because things didn’t go as she planned they would) but the basic gist of it is that she doesn’t have the coping skills to handle that things aren’t working as she expected them to. Discipline isn’t the way to handle this. She needs to know that I am here to support her in whatever way she needs.
From the outside, this can look the same, if you don’t look too closely. Screaming, crying, flailing limbs. Generally unwillingness to engage in questions.
Now, I will add in the general caveat of this is my kid, and the standard “if you’ve met an autistic person, you’ve met one person with autism” statement before I go too much further. But I think it’s pretty safe to say that some of these methods can be applied to other autistic children to help differentiate.
For Little Miss, when she is throwing a tantrum, usually I can ask her yes or no questions and get answers. Depending on just how upset she is, I’ll probably only get “no” but she does respond. If we’re in full meltdown mode, we often won’t get any response at all, maybe just head shakes. I will sometimes ask if she wants some quiet time in her room by herself, regardless of if I have identified if this is a tantrum or a meltdown yet, and she’ll either say yes/no or nod or shake her head, and we’ll proceed from there.
If she wants time in her room, then I’ll take her to her room and give her a hug and tell her I’ll check on her in a few minutes. After about 3-5 minutes by herself, I’ll go in and check on her, and she’ll usually be back in a better mood. At this point, if it worked, it doesn’t really matter if it was a tantrum or a meltdown if she’s feeling better, we’ll talk it out and move forward.
If she didn’t want time in her room, that’s fine too! I’ll ask her if she wants a hug. And move on to other relevant questions based on what’s been going on (did the dog get her toy, daddy not listen to her, neighbor kid break her toy, etc). If nothing is working at all I might stop talking and just stay around/near her but stop actively giving her attention.
Like pretty much all child behaviorists will tell you, I have found that when I stop actively giving her attention, if we are dealing with a tantrum, then the tantrum will stop entirely. She will start trying to re-engage me with play. Once she regains my attention, she will start up the tantrum again, and then I know how to proceed.
If it’s a meltdown, the removal of attention won’t do anything to stop the behavior, because she’s struggling and the attention wasn’t what she was seeking. Once I have confirmed that this is a meltdown, it’s time to start trying to isolate what caused the meltdown. This can be tricky sometimes, as it isn’t always the most straightforward thing to an adult mind, but once you find what it was, you can start coming up with coping mechanisms.
One of the most recent gigantic meltdowns that we had in our house was because our wee lass had made plans with some store bought cupcakes in our house that she hadn’t told us. There were three left in the house and she had already assigned them to each of us: there was a specific cupcake that was hers, one for me, and one for her daddy. We also had some cookies in the house, and she wanted to offer a cookie to the neighbor kid’s mom, but daddy misunderstood and gave the neighbor mom a cupcake.
Not just any cupcake. Little Miss’s cupcake. Now Little Miss’s plans of evening cupcake time with Momma and Daddy were ruined because there weren’t enough cupcakes for all three of us and only Momma and Daddy had cupcakes and hers was gone. She was absolutely distraught.
It took a good chunk of time to figure out what about this situation was so hard for her. Daddy was willing to give up his cupcake for her, she wasn’t going to have to go without a cupcake. We had offered the neighbor mom the cupcake already, so it would have been pretty rude to not give it to her. We explained all of this to Little Miss, but she was still so completely upset.
Quite suddenly I realized that it wasn’t even about the cupcake at all. She just wanted to have us all sit down and have a little time together with the cupcakes. Her plan was for family time, and since the cupcake was gone it meant that family time was also gone. This broke her whole heart into a million tiny pieces and she had a full blown meltdown.
So, we talked it over, I gave her a million hugs, and we made a different plan for family time. It’s all a work in progress, but hopefully Little Miss picked up a new coping method. It won’t be her last meltdown. But with careful navigation of her big emotions we can help her navigate them and learn to express them better.
There’d be a description, except it turns out that no one could figure out how to describe the club.
Humor aside, alexithymia is a fun little condition wherein an individual has difficulty identifying their own emotional state. There’s no diagnostic criteria within the DSM V as there are honestly quite limited studies done on it. It was coined in the 70s by a psychiatrist to try and explain why some patients basically have no story to tell for why they do things like self harm or who have severe struggles putting their feelings into words.
Despite there being no diagnostic criteria within the DSM-V, there are, some screeners that you can do to see if you might potentially have alexithymia. Feel free to hit it up here.
Autistic individuals may find this particularly interesting as while alexithymia may only be present in up to 8% of males and 2% of females, it looks like the percentages go way up with ASD. Various studies have found different numbers, but it looks like it about half of us have alexithymia.
It does kind of make some sense, no? Difficulty recognizing our own emotions at any given point in time might just make it more difficult to recognize emotions in others which can definitely impact social skills and so on, just kind of piling on to the lovely pile of things that comes with the whole package.
For me, on pretty much any given day, at any particular moment. If you ask me how I’m feeling, even if I’m really, really thinking about it and trying. I’m just going to be feeling “meh”. It’s just flat. There’s nothing really going on.
I get heart palpitations that I presume are anxiety related because they only come on during times that are logically high stress, but when the palpitations occur, I am not even aware that I feel any different than any other time.
I usually won’t even realize I’m stressed until I’m way passed the point of no return, so to speak. Easily irritated and wanting to rip my hair out and hide and cry? Yep, obviously I’m stressed. If only I had realized this earlier and could have taken a break.
As I have gotten older, I have gotten better at identifying some emotions. Mostly negative emotions. Have you ever noticed that there are only really focal classes and seminars and such on negative emotions? How to identify negative emotions and manage negative emotions? It’s recently been bugging me that there aren’t really similar things for telling the difference between joy and happiness and elation. What is the difference between these things?
Just like frustration and anger and rage are not all the same negative emotion, even though they are all on the “anger” spectrum, but I honestly have no idea what the difference between the scale of “happy” spectrum is.
There are a few ways to help improve the recognition of your own emotions, even for those of us who struggle: regular journaling, reading, therapy, etc.
Journaling out your thoughts and emotions each day is a great way, albeit it will feel really silly and actually be challenging when you start. Once you start trying to name out what you feel, it’ll help you learn to start identifying them more and more frequently.
Reading, well, of course. I’ve always been an avid reader. Doesn’t even need to be novels or anything, just other people’s stories, manga, or whatever else you can find. You will find that in pretty much all versions of a story out there, emotions are well documented and explained. The more versions you read and explanations behind them, the easier it will get to identify it within yourself.
Therapy is pretty much always a good one, a trained specialist working with you is an unbiased source who has all of the expertise and experience to make sure you don’t get led astray while working on it. They can also help you work through other problems at the same time. I’m super pro-therapy, provided that you can find a therapist that you mesh well with.
For me, personally, it’s been a mixture of a lot of self-reflection and reading to get a better idea of what makes me tick. Reading other people’s experiences. Reading fiction. Reading non-fiction. Reading a ton of stuff on reddit. Reading pretty much anything I can get my hands on pretty much anywhere. Thinking about how I reacted in various situations. Near-constant self-reflection (which is what journaling also touches on).
I’m still not fantastic at it, by any means. But, I will say that I am getting better.
Like pretty much everybody else in the current fun times that we are experiencing, the covid struggle has been both a blessing and a curse.
I am grateful to work for a fantastic company and I have been working remotely since March. Also, I’m introverted, so that helps a ton with the whole trapped in the house thing. I do have a husband and a smallish child though, so that does hinder the whole autistic introverted thing just a wee bit. I usually need an absolutely exorbitant amount of me-time. Kiddo usually wants an absolutely insane amount of momma time. And we are all pretty danged stressed by the current state of affairs in the world.
I started out pretty okay. I wasn’t particularly optimistic about this. I actually had no faith whatsoever that this would only be a few short weeks and then everything would go back to normal. In fact, I told all of my friends that this was going to be a long haul in early days. As soon as I realized that Italy was getting overrun and they had cases with no known travel, I highly suspected that we were pretty much done for here in the States. Travel was still a free for all here at that time. It was already game over and we didn’t even realize that the game had started without us.
So, overall, I started out pretty strong. I didn’t have a mad dash to buy a million rolls of toilet paper, I didn’t need to stock up on dried goods. I just finally actually did some home improvement projects I had been planning for, well, a while, and just never got around to because I could never find the mental energy to do them.
Put in some ceiling fans. Got my bar for my kitchen looking all spiffy. Kid hates virtual pre-k. Bribe her with chocolate to at least try and participate. I don’t pride myself at being the best parent with that, but hey, at least I did something.
Then summer hit. And everything kept lingering on. I think that we all know that this is when the Covid fatigue really start to hit us. It was beautiful outside, and the spread seemed to stop being so scary. I was walking my dog as much as I could, taking my kid outside. We went hiking.
I still hit an autistic burnout. I couldn’t handle anything. My brain was done. I was done. I couldn’t handle doing my job. I couldn’t handle existing. Couldn’t handle doing anything.
That was the roughest spot for me. I should have known it was going to happen. But, I didn’t want to use PTO to just, sit at my house. And some delusional part of me still hoped that by fall/winter we might be able to have some sense of normality.
It turns out that when I attempt to run entirely too many months in a row being super mom, rock star employee, a proper wife, take care of my pets, take care of my mental health, and finish my masters all while there’s something as small as a global pandemic and and some massive political unrest, I might kind of lose the ability to focus just a wee bit. Who’d’ve guessed?
So yeah, I hit the dreaded autistic burnout. I couldn’t function at all. I lost all social skills. Couldn’t make eye contact with a cactus. I had a phone interview during that time period and it was quite literally the worst interview I’ve ever had. Asked if there was anything I could clear up at the end and she was like “nope, I think it was okay, especially if you haven’t interviewed in a while and you’ve lost some skills”…
Ouch. Let me go get a band aid and some burn cream or something.
Since then, it has been a hard climb back up from that bottom. The time off from work helped a lot (again, very, very grateful that I work for a super understanding company with flexible benefits). I have had to make sure to take time to just relax. And to be totally honest, stim my poor little brain out.
Probably the best thing I did for myself in the fall is I upgraded my desk from a normal office desk to a sit/stand desk. I almost never sit or stand still. The normal office desk and chair station works, of course, but with the sit/stand I can get more comfortable in pretty much whatever position I want. Along with it I got a sit/stand wobble stool as well as a wobble board to stand on. Basically I have the ultimate fidget all day in whatever way you want desk now. It’s fantastic. Let’s me get all kinds of stimming behaviors out while I’m working.
I would be lying if I didn’t say that a lot of other stuff didn’t fall to the wayside as I’m struggling with the wreck of garbage that everything in these disastrous times have brought to us. I have a list as long as my leg of all of the things that I am behind on and need to get done. I find myself saying “I don’t have the mental energy to…” on so many things lately.
But, I have found, that I’m not the only one in this boat. My boat may look a little different than yours. Maybe yours is a little bit steadier, or maybe you’ve hit a couple more rocks and are struggling to stay afloat as well. Maybe you’ve seen some smoother seas lately. All I know is that it has been rough seas for so many people this year and that even those of us who have seemed to have it so much easier than others this year (myself included in this) have struggled to keep it together.
After the storm blows through, the greens of the plants always looks so much greener than they ever did before. In the eye of the hurricane there is quiet. We can and will persist, I wish all of us the best through what is hopefully the last bit of this long haul of this covidian nightmare.
My daughter received her autism diagnosis at five (and at the time of writing, is two months shy of six). It didn’t come particularly easily, per se, but I had braced myself for a much bigger challenge. I definitely cried and let the relief settle in after I had the piece of paper with the diagnosis in hand as I realized that I could set aside the armor and steel I had prepared for a lengthy battle.
Signs During Early Development
From birth to the first year, she was mostly like any other baby. That’s pretty much the story of any autistic baby, of course. She walked around 9-10 months old. She was doing everything early or on-time. Way ahead in gross and fine motor skills for her age. Basically, not showing any delay whatsoever.
Pretty much the only red flag in this general time range is one that is even fairly common in neurotypical babies. She would hit her head with her hands to self-soothe. She would also lightly bang her head on the floor to self-soothe. She liked soft toys and sleeping on her stomach.
18 month appointment happens. Same story, generally nothing of concern whatsoever. She’s still on par, though perhaps a little too average in the verbal development category compared to the rest of her development range, where she’d always been generally ahead.
No hand flapping. Her physical stims are different. She loves sand and had a sandbox that she was in most days in this time period. We also had a ton of sensory toys for her to stim with constantly available just because they are super common for babies and toddlers. She understood me pretty well. Complex directions? no problem. She was as behaved as I’d expect a toddler to be. She was very attached to me.
The 2 year mark has an expected minimum vocabulary of 100 words. I wrote down every word that I could think of that she had ever said, regardless of whether or not she used them regularly. Every word she ever said equaled out to precisely 100 words, so it was okay… right?
At this point I already suspected that I was on the spectrum (though I hadn’t really done too much voicing it to others yet, I still needed time to really finish accepting it internally first) and I knew it could be genetic, so I was keeping my eyes out for pretty much any sign from here. She said short sentences here and there, but not frequently. She said phrases. She had words. But it wasn’t quite right… I had to remind her to point to things so that I could understand what she wanted. We had so many meltdowns because we couldn’t understand each other.
At 4, pronouns were still mixed up constantly. Pretty much never used the right one. They were also pretty difficult for her to understand. She also never referred to herself as “I” or “me” until after she was enrolled in public Pre-K, so around 4.5. She had always referred to herself solely by her first name.
At her 4 year appointment with a new doctor, she did not cooperate at all. She generally refused to answer their developmental screener questions, answered their questions with the same question (which is an autism red flag at this age, yet the nurse just assumed she didn’t know the answer to the question), and also just didn’t even participate in either the vision or the hearing test. She can be a very difficult child with strangers as she will refuse to engage. Another yellow flag.
Outside of that, her speech was a little garbled and mispronounced and pretty much unintelligible to anyone aside from me (even my husband had trouble understanding her most of the time) until she was about 4. Suddenly around 4 she was speaking in super clear sentences that most people could understand. Around 4.5 she was mostly caught up to her peers in terms of overall pronunciation and verbal ability.
Personally, I can tell that she does still have a small delay in how much she is still able to communicate compared to her peers, but it is a small gap and it is pretty hard to detect. It seems like she is able to read some but is having a very hard time communicating what reading means when we try to get her to reproduce reading verbally. Even now, pronouns still get mixed up quite often. Heck, even I still mistaken mix up pronounce quite a bit, honestly. Too many pronounces get hard. I can honestly say that I recently struggled at a certification test that I feel confident on the material because I can’t say with confidence who the “they” they were referring to in a number of the questions actually was.
She has also always been a very well behaved child. This seems to be one of those things where people either know what I’m talking about with an autistic child or think I am out of my mind. Yes, she throws tantrums (and has meltdowns and shutdowns) and yes, she acts like a kid and doesn’t always do what I’d expect and she makes messes. But generally, she’ll listen to me and she’ll abide by the rules, so we haven’t run into too many big issues.
She absolutely interprets rules as something that are written in stone. It’s definitely more Ella Enchanted than Pirates of the Caribbean. If I offhandedly mention that she needs to stay in her room after bedtime because she needs to try and go to sleep, it used to mean that she’d be crying and screaming at her door begging to be let out so that she can go potty (potty training woes). Door wasn’t locked. She just knew that the rule was “don’t leave the room after bed time” and momma had done a very bad job of explaining that there are exceptions to that rule for pottying. It took a few times of explaining that there are indeed exceptions: if you need to potty, if you’re scared, if you need momma or daddy, if you feel sick, etc.
She was pretty late to realizing the emotions in the animated kids shows. Started calling them out to me about a year or two after her neurotypical peers would have been saying what those emotions were.
The final nail in the coffin was when we took her to Sea World so that she could see the animals (she has a Special Interest in the ocean, which is only partially my influence, and partially the influence of the Octonauts). She loved feeding the seals, seeing the exhibits. I even bought special seats at the shows so we could get closer and see them better so she could enjoy the shows too! I wouldn’t have tons of fun because the shows are so crowded and super noisy and the way the sounds bounce of the water and the cement is awful, but as long as she is happy, I’ll be happy.
Before the shows started when there were only a few people in the stadiums and the trainers were showing off the animals, she was absolutely enthralled. She would tell me all about the orcas, or the penguins, or the seals. She’d get so excited watching them swim. Correct other people calling the orcas anything other than orcas. She was having a blast. And then more people would trickle in. And all the voices at once would start to echo. And she’d start to not like it.
And then we’d add in the microphones and music. And even more people. And then her hands would go over her ears and she’d grab my hand and be begging me to leave. So we’d leave. And never even watch the show.
I’m not totally keen on the ethics of Sea World anyway. It’s cool. I just wanted her to have a good day.
That particular day was especially eye-opening to me as she is an only-child, I am a youngest child, my husband is a youngest child, and I was never a baby sitter. I had a special interest in psychology, so I have read more than my fair share of child development books. Which is most assuredly not the same thing as actually seeing the difference between your kid and their peers up close and personal like that.
So many other kids were enjoying everything about the insane noise and echo and screams and shouts and music and whale water spouts and splashes and insanity of the orca show. Mine was the only one dragging us away from it.
Just like in the office meeting of 100+ people across multiple rooms and two physical locations when the virtual meeting rooms got left unmuted and everyone was talking at once, I was the only person head down on the table top with hands over my ears trying to become one with the desk.
After Sea World we still had a couple more rounds of processes before we got her to the pediatric neurologist. Her pre-k teacher told my husband that she didn’t think that the kiddo was on the spectrum. I went to the parent teacher conference a few days later and she was trying to assuage my worries, not even realizing that what she was telling me was actually just helping to confirm that the kid is already picking up masking tendencies. “She has her playground friends. She has her music friends. She has her art friends”.
In a study by Laura Hull in 2017 they researched some what masking is as well as what it does to people who mask (i.e. if they feel stressed, etc). They found, and corroborated with prior research, that (especially girls with autism) tend to mask their traits by sticking close to their friends and flitting in between different tasks so as to avoid detection of their autistic traits. When I was elementary school age, this translated directly to me having “playground friends” and “music friends” and “art friends” because my brain basically didn’t really register that they could still be friends in other places.
The next step was her doctor, again. He was fantastic and I made sure to express my worry of having to jump through a million hoops and be her personal warrior to get her properly assessed and diagnosed, so he made sure to refer me to a pediatric neurologist that he had experience with, in network for my network. My experience with her was as wonderful as could be expected and we left that appointment with a diagnosis in hand and a whole weight lifted off of my shoulders.