The population I’m writing about often goes unspoken of; Autistic people who want to have children in the future. You may think I don’t have enough material to write about this. After all, I’m not Autistic and Caley’s not a mother. I really, really wish you were right.
The not so subtle hinting started, I think, when Caley was in middle school and discovered how adorable babies were. She’d coo at them and play with them and openly admire them. She even declared that she wanted her own someday*. That’s where the ‘nudges’ began. First it was warnings. “You know, babies are a lot of work.” Then it came out into the open.
In the years to follow, pretty much any time she expressed liking a baby, Caley was reminded repeatedly that because she was Autistic she shouldn’t have children. Why? Well, she wasn’t competent enough, they said. And besides, Autistic people are well known to have fill-in-the-blank problem(s) which would make it so she couldn’t handle having a child, they said.
Suddenly, Caley stopped liking babies. In fact, she started acting like she wanted nothing to do with them and saying that she hated them. What had happened, my mother and I wondered, to cause such a dramatic turnabout? Now, all these many years later, she told me. Since she was told she couldn’t have babies, Caley says she decided to try to convince herself that she didn’t like them, to reduce the pain. This period lasted for years – all the way until this past year, in fact.
What changed? Well, in this past year, Caley has come into her own and has finally told us her dream, which despite the work of those many years of denial, never died. She wants to have children. Not now, of course. She wants to graduate, get married, and become financially stable first. But she definitely wants them. And now that the family understands autism a bit better, most members support her.
Society, however, still does not. And so it was that Caley called me in tears four months ago. She’d stumbled upon a post online where the person was arguing that Autistic people would be terrible parents. The full post tried to rationalize why autistic people shouldn’t be parents, through “logic.”
I think the first sentence of the post – “I am not saying you would be an unacceptable mother and compared to having no mother or having a violent mother a mother who simply does not care about their kids I think a loving, autistic mother is a good alternative.” – kind of says everything. Maybe if she hadn’t been told growing up that being Autistic would make her an incompetent mother, this wouldn’t have hurt so much. After all, this is the Internet and people make highly offensive claims about subjects they know nothing about all the time.
But to someone who grew up exposed to the narrative Caley did, this hit home. So instead of brushing the author off as a troll or typing out an angry reply, she turned their words inward. “Is it true? Would I really be a bad mother?” she asked me, voice trembling. “Because if I would then I need to know so I don’t have children.”
We were spiraling downward, and Caley was right back on the path she’d trodden for so many years, the one where she was going to try to convince herself, again, that she didn’t actually want or even like babies. Far better to believe a lie than to feel the pain of reality.
“No, babe,” I told her. “This guy doesn’t know what he’s talking about.” And then I proceeded to rip the poster’s “argument” apart and show it for the farce it was. “Oh, good,” she said. “But why was he so mean?” The answer to that, of course, is ableism.
The commenter wasn't trying to be mean, of course. He thought that was a perfectly rational and acceptable argument, and presented it in a very logical manner, citing the damning “facts” that autistic parents can’t tell the difference between tones so they won’t know why a baby is crying, or when their teenage children tell them their day at school was “Fine” autistic parents won’t be able to read their tone and tell how it was. (If this disqualified one from parenthood, there would be a great many fewer parents in the world…)
The people who told Caley she shouldn’t have babies didn’t realize it, either. They were just following common sense. Everyone knows autistic people shouldn’t have children (it will never fail to surprise me how many of the things “everyone knows” are patently false). Caley is Autistic, and therefore, following their logic, she should not have children. To remind her of this fact was difficult for them to do, but it was their duty to do so and it was all for the best. Or so they thought.
What these people don’t realize, however, is that there are plenty of autistic mothers and fathers all over the world. In fact, that seems to be one of the greatest routes through which autistic adults are diagnosed – their children are found to be autistic, and the parents realize, in turn, that they are, too. Mothers, fathers, grandparents, great-grandparents, autistic people have filled all these roles, and done quite a good job of it, too.
When ableism really sneaks up on you is when you don’t even realize it’s there. It oils its way in under the guise of ‘common knowledge’ and its claims are never questioned. But, once you realize its presence, its foolishness becomes apparent and you can fight back against it. And that's exactly what most of the people who once warned Caley she shouldn't have children have done, now that the ableism involved has been made clear to them. But they had to have it pointed out to them first.
That is why I write this post. To show it to you. To warn those of you who are parents of autistic children to make sure you don’t accidentally reflect this attitude or allow others to reflect this attitude onto your children. (Because it starts young.) To show those of you broader members of society that this outlook really is a problem, so that you, too, can combat it where you see it.
For my part, all I can say is this. If and when Caley decides to have a child, or even multiple children, I will be right behind her supporting her. And those children will be some of the luckiest children in the world to have Caley as their mother.
*Though I focused this post on the Autistic experience, about the same time that Caley was warned about her love for babies, to highlight the plight of siblings, I would like to add that I was warned, too. As a sibling of an Autistic person, I am more likely to have an Autistic child, I was cautioned. I should strongly weigh this when I was deciding whether or not to have a child, and I needed to warn my future husband of this possibility and “be prepared for the worst”. Though my competence was never questioned, there was definite hinting that I may wish to consider not having children.
For years afterwards, I worried about this, and though I never went quite so far as Caley did, I thought that if I ever got married, I would have to marry someone who was okay with adopting, because having children who shared my genetic material was too risky. If someone tells you the same thing enough times, particularly when you’re as young as I was, you’ll believe them.
Now that I’m older, funnily enough, I still think that if I have children (that is a big if, mind you) I like the idea of adopting. The difference, however, is that now I would purposefully want to adopt an autistic child. It's ironic that the very thing I was warned to fear is now the very thing I would seek out.
Reading my previous post, I realized how easy it would be, were Caley less able to communicate what was going on and our family less familiar with autism, to get the idea that her autism was ‘getting worse’. Naturally, this phrase is problematic in of itself. Namely, autism is inseparable from Caley, just the same way that being female is, and she doesn’t view being autistic as a bad thing. As a result, the entire phrase just doesn’t work.
But in our hypothetical scenario, in which, say, a parent of a newly diagnosed non-speaking child was viewing these same changes, I realize that it’s easy to get the wrong impression and think someone can get ‘more’ and ‘less’ autistic. Today, I’m going to clear that up.
For some background for those unfamiliar with Caley’s situation, lately she has been having more autism-related difficulties. She has a stronger need than usual for predictability – she needs routines and plans to remain unchanged right now, and if they are changed it’s highly distressing for her. She has greater sensory needs than usual, as well. Recently, Caley began biting at her wrists, due to sensory needs, so we bought her some chewelry (in this case, a chewable bracelet) to help her address that urge without hurting herself.
Caley’s also more sensitive to sensory sensations than usual. As a result, all the usual restaurants that we used to eat at are out of the question – now we have to eat the table furthest away from any other patrons in a quiet Japanese sushi restaurant. And having earplugs on hand is a must. She has greater difficulty coping with shopping trips, and more trouble functioning in daily life, whether it’s preparing food for herself or getting to class. In short, her functioning level at the moment is significantly below where it usually is (although, of course, it fluctuates day to day and moment to moment).
With all this as background, it’s easy to see how someone less familiar with autism might mistake these changes as coming from her autism itself changing. The reality, however, is far different from that. Caley is just as autistic as she has always been. The difference, however, lies in her coping abilities. Ordinarily, Caley can blend pretty well with neurotypicals. But doing all the neurotypical-seeming things – dealing with changes in routine without showing the strain, coping with sensory input, etc – take energy. (See ‘the spoon metaphor’ for more on this.) And the instant that Caley gets sick, or is dealing with depression, etc, the energy she normally uses to help her deal with the neurotypical world is used instead for dealing with this new problem.
Here's Caley's explanation:
"Since I’m having to deal with other things, the energy I normally use to deal with things like making sure I seem neurotypical-ish and cope with sensory things is diverted. The supposed “bad things” about being autistic get emphasized more."
Without the energy to devote to blending, Caley’s autistic characteristics seem to strengthen. But, again, that’s not a change in her autistic-ness – it’s a change in the energy she can devote to blending in.
I hope this helps explain some of the fluctuations in ability levels you may see in people on the spectrum and the reason behind them. Let us know what you think!
Image is of my mom, my sister and me splashing in a creek, undeniably happy. Our mother had waded in under the condition that we under no circumstances get her wet. Given that she was dealing with a seven year old and a four year old at the time, though...well, it was just too tempting. In the photo my sister and I are dancing with glee at having partially pulled our mother into the water. Mom? Well, she can't stop laughing.
Our life was certainly rather unorthodox. And yes, sometimes things were hard. But other times, like this one, they were really, really awesome. I'm not saying all parents of autistic children view their lives as happy ones, but ours certainly has been. Stick with me, the way the picture ties into the story is going to make sense in just a bit.
To the Woman Who Pitied Me for Having an Autistic Child,
First of all, I want to start this by thanking you. I’ll admit, every time I take a child who’s on the spectrum to the movie theater, I’m always a little nervous about how my fellow movie-goers will react.
I met a wise mother of an autistic child a couple of years ago who told me that autistic children had just as much of a right to go places in the world as other children did. I admired this mother, and I have sought to practice her words. That said, it’s still not always easy dealing with the judgment of others, and I’ll be honest, I’m always a bit nervous that some theater-goer will complain or take me to task for bringing a child on the spectrum to the theater.
Coming from that perspective, and given that today’s movie was a bit over (or perhaps under?) stimulating, leading to extra loud stimming, attempts to run out of the row and loudly playing pretend with popcorn (which, by the way, is super cool, but I doubt my fellow theater goers appreciated how awesome what they were hearing was), you can see why I might have been nervous that some tsk’ing person might come up to me afterwards and tell me I should have removed him from the theater.
But no such person came. Instead, you approached me after the movie as the child on the spectrum was telling me excitedly about the movie “Home”. You didn’t say much, simply tapped me lightly on the shoulder as you walked and as you passed me you whispered with tears in your voice, “Bless you.” It was literally only a second long interaction, but every bit of your voice was packed with utter sincerity.
I had feared people approaching me with anger, but instead you came to me with compassion. And for that, I very much thank you. I truly wish there were more people like you in the world – people who viewed the world through a paradigm of love, rather than anger.
I’ll be honest – I was a bit speechless at first. There was so much I had to say, but either to keep our conversation hidden from the child in question or because you were busy with (presumably) your own family, by the time I turned around all I got was a glimpse of your face and then you were gone.
Driven by the urge to say something, and at least acknowledge your kind intentions, I called at your back, “Thank you?” Yes, there was a question mark. And I suppose the question mark will have to contain everything that I had to leave unsaid at the time.
As you’ve read by now, I truly did mean the thank you. Your intentions were the best, and the world could always use more blessings. Yet, the question mark arrived from what the words and the tone of your voice and even your facial expression strongly and unmistakably conveyed: pity.
I appreciate your blessings, really I do. And I see where you’re coming from, having only witnessed the encounter on the surface. But allow me to explain what was really going on from my perspective.
In my view, I had just had an awesome time with two great kids I love dearly. I’m sure I looked a bit haggard – but that’s because I was fighting off a burgeoning migraine from the bright movie screen and loud speakers, not because of the kids.
Sure, the child on the spectrum was a bit all over the place, and, yes, I did have to keep him from running out of the aisle. But I loved watching the movie with him and his brother. Hearing his infectious belly laugh (I dare you to listen and not smile), watching him play pretend with pieces of popcorn of all things (which, as I said, is really cool – in case you didn’t know, playing pretend is something a lot of kids on the spectrum struggle with, and I will never tire of watching him do it), bouncing him on my legs and giving him bear hugs for sensory stimulation (which I thoroughly enjoyed doing), hearing him talk to the movie (which is something I actually worked hard to get him to do at home, not realizing that would generalize to the movie theater – hearing him ask those ‘wh-’ questions, though, I still have no regrets), it was all fantastic!
So if your pity was for my migraine – thanks, I really needed it. But if it was for having an autistic child with me at the movies, as I suspect it was…then, no, I actually had a wonderful time. Happiness comes in all shapes and sizes, not to mention neurologies, and I have experienced few moments of happiness stronger than the time I spend with these two amazing children – our movie theater visits included.
Of course, after I thought this through, I realized that your blessings probably went far deeper than that. It was probably not about our movie theater experience at all, but the fact that I appeared to be a mother raising an autistic child.
Here, I’m not in as good a position to speak from. You see, I’m not actually his mother. I was just caring for him and his brother for the day, while his papa rests and his mother is out of town. (The papa for whom the little one wanted to go to the grocery store and buy soup and Gatorade and flowers for to make him feel all better - yes, autistic children are more than capable of loving and caring for their parents, as this one utterly and completely does, and his parents more than return the sentiment.)
Still wanting to address this component of your good intentions, I turned to my own mother, who also raised an autistic child – my sister, Caley. And she backed my own instincts: at least in her view, there’s nothing to pity. Sure, things can be really, ridiculously hard at times. But they can also be really, ridiculously awesome, too.
There seems to be this assumption that life with an autistic child cannot be a happy one - that it's a life worth pitying. But life with an autistic child is, well, life. There are ups and downs, like any other life, though they certainly seem to be a bit exaggerated at both ends. Though there are certainly more societal barriers to overcome, there is so much joy to be found in life that at least in my family’s experience the scale more than balances out.
Your blessings are always appreciated. But your reasoning behind this particular one – well, that might have been based on inaccurate data.
I still greatly appreciate your kind words, and do not wish to discourage you from greeting others with the same compassion that you showed me today. I know what most people’s impressions of what life is like having an autistic child are, and I know they’re pretty uniformly terrible. All I wanted to show you with this letter was, well, that things may not be what you might think.
Thank you again for your compassion.
Creigh, AKA, the woman at the movie theater
We're doing another haircut tomorrow you guys. And right now, as I'm trying to go back to sleep, I can't help asking myself over and over in my head - is there anything else I can do to make this easier? And, more importantly, do we have everything prepared? As we've done several of these haircuts now, I'm starting to develop a list of things that we need to bring to make the process go more smoothly/easier on him. At this point, it's almost like a checklist.
My Checklist for a Successful Haircut
- Phone with lots of fun apps
- iPad, also with lots of games
- Super hero capes (he won't wear the hair dresser capes, hence the super hero capes. which are looser around the neck and also feel cool)
- Lots of choices of clothes: Long sleeve shirts and long pants (multiple sets to change out as hair gets on them) and Buzz lightyear costume (because may as well try to make this feel cool)
- Visual schedule (with a positive thing, going out for ice cream, immediately after the trim)
- Candy (I use candy as reinforcers. My candy of choice is mini M&Ms to try to reduce the quantity of sugar getting into him.) [Update: Later on we switched to Legos from one of the small sets. Every three snips he got a Lego. It got to the point he was requesting snips! You just have to find what works for them...]
- Sensory brush (for before the appointment)
And the most important thing? A hairdresser trained in working with autistic people. We have an autism group semi-locally and I called to ask them who they recommend (which I highly recommend parents do as well!). Turns out they train businesses to be autism friendly and they recommended this one. It also turns out that this particular hairdresser didn't need all that much training - her son is autistic. This will be our first haircut with her, but I'm sure she'll be great.
[Update: She wasn't great, actually. She insisted on trying to use the buzzers instead of the scissors, even though the child was terrified of buzzers. I ended up advocating for him and as soon as we switched to scissors, it was like magic - he did MUCH better.]
Now, some of you may be wondering, why is having a haircut such a big deal? There are three major aspects to this answer:
1. Sensory issues
This is a really big factor. Hair salons are often bright, you have loud clippers/scissors on your head/next to your ears (I'm bringing ear plugs to help with this, if he'll wear them), and, worst of all, some stray hair will inevitably fall on your skin. For those of us without sensory issues, this hair is already annoying and bothersome. For someone WITH sensory issues (which autistic people do have) this is likely to be magnified, to the point of a significant amount of pain.
Either different sensory issues (I think it's that it's too tight around his neck) or simply past bad experiences have led the child I care for to refuse to wear a hair dresser's cape. That means in order to keep the hair from falling on his skin (which hurts), we've had to get creative - hence, the super hero costumes.
2. Bad experiences
Even the hairdresser herself said before she knew her son was autistic, she didn't know how to help him with haircuts. Before a child is diagnosed, it can seem like they're just having a temper tantrum or 'acting out'. And even if you know those aren't the case, without the guidance of a diagnosis it can be hard to know what to do to make haircuts less traumatic.
This can result in bad experiences for the child and lead them to associate hair cuts with bad memories. Parents, don't feel bad - before a diagnosis, you really can't know why children are reacting this way, and if you don't know, you can't know how to help.
To help with the previous bad experiences, at a previous hairdresser's brilliant suggestion, we've rebranded hair cuts. They are no longer called hair cuts around him, they're called trims. This actually works because the experience that we're doing now is like night and day different from what happened before he was diagnosed.
Now we play by his rules on his schedule, to whatever extent we can, and offer loads of treats and games to help smooth the experience. And when I told him we were going to be doing this tomorrow, he made sure to tell me that it was NOT allowed to be a hair cut, it had to be a trim. So the rebranding has definitely worked.
Change can be a difficult and scary thing to deal with for people on the autism spectrum, and hair cuts bring change. They bring change in how your hair looks, and they can also bring changes to established routines. To help minimize the impact of the latter, we're using a visual schedule (which we started reviewing together this past night).
We're also making sure that this is coming on a day relatively free of change earlier in the day. Last time I made a mistake in assuming since a change earlier in the day had been dealt with well, we were still fine to deal with the trim. I was wrong. Dealing with change and sensory problems and other issues isn't just something that gets taken bit by bit. It's a cumulative effect. So though he'd done well with the change earlier in the day, that left him with less energy left over for coping for our big change in the afternoon.
So that should hopefully help explain the reason that haircuts can be so difficult, and what we're doing to help minimize these issues. Oh, you guys, I am so nervous for him (as I always am with these haircuts - I know how rough they are on him). I really, really hope it goes well and we can continue down our road to successful, non-traumatic hair cuts. *crosses fingers* Wish us luck!
Update: We went for a 'dress rehearsal' and determined that another thing that should have been on this list is, given that he's scared of a hairdresser's, having the haircut take place in the hairdresser's house instead of a salon.
We learned from experience. And now, after a great deal of trial and error, he actually REQUESTS trims, because he knows that afterwards he'll get to go see a movie! Persistence, listening to his self-advocacy (even if it wasn't in words), and following the keys to a successful haircut outlined above really did the trick!
On the earlier post on Diary of a Mom, where Katie concluded that to 'cure' her sister would be to get rid of the person that she is, a mother commented about how ashamed that she felt that she had not realized this. She said that she had tried everything to cure her son of autism, and now she felt shame that she had ever tried to do so. I replied to her with the following, and then realized that the rest of you could probably use to hear it as well. So here it is:
Don't feel ashamed. We've all been where you are. But what matters most isn't where you've been, but where you're going. My sister and I have to argue with our own mother all the time, because she and our other relatives feel terrible for not having realized all along Caley's own thoughts about being Autistic. Now they read our blog and are pretty frequently ridden with guilt when we talk about Caley's true feelings and experiences, because, well, holding yourself to the standard of perfection is one of those things parents tend to do, never mind that they would have had to read minds in order to know what Caley's now expressing.
But here's what we tell our mom every single time. You didn't know. When Caley was diagnosed, everyone told you to grieve, to mourn for your lost child, to regret all that she could have been and would never be, and to fight autism for all you're worth. (A psychologist literally told her these things.) You believed them. Because you didn't know, and you could not have known based off of the information that you had. Now you do know, and you're acting on that knowledge. And that, that's the important thing. Guilt paralyzes - knowledge empowers.
This picture is the perfect example of this:
In the photo, Caley is plugging her ears and looking afraid, forcing a pained smile for the camera, while I pose happily next to her. We were sitting under a bell tower and told the bell could go off at any moment. Caley was, of course, terrified of the sensory onslaught she was about to experience. Mom and I just thought she was over-reacting. After all, the bell wasn't really that loud...right?
We didn't know. We didn't understand how she felt, how she experienced her world. Back then she was too young to really be able to explain it, and there weren't the Autistic advocates speaking out to educate others that there are today. Not to mention the fact that this photo was taken pre-diagnosis.
These are the types of moments that parents look back on, saying, "How could I not have seen?" But short of being autism experts prior to diagnosis (which few parents are) or mind readers, there's no way to have known. Thinking about an incident like this in retrospect (which every parent of a child on the spectrum has) shouldn't be a cause for guilt, only cause for understanding going forward. And I will add, Caley doesn't blame our mom for not having known, nor do I. (Which is a good thing, too, because I didn't know, either.) She, too, understands.
I would like to add, my Momma's a danged awesome mom. And I'm sure you all are great parents, too.
Lately Caley’s been needing a bit more support, so I’ve been coming down every weekend I can to visit and help her. Every time I visit, we eat at the same restaurant: a Japanese sushi restaurant.
Initially this was done because of sensory needs. A sushi restaurant, blessedly, is darker and quieter than most restaurants. Right now, with her higher than average stress levels, Caley has less energy that she can devote to helping her deal with sensory problems, which has eliminated most any other restaurant as possibilities.
Lately, though, we’ve been eating at the restaurant not only out of sensory needs, but also out of a need for routine and predictability. After the first three visits there, Caley said eating there became a tradition for her: a routine that she could count on to provide predictability. What’s more, she has ordered the same fish and vegetable dish each time.
Today she professed that she would like to try something else, but as that would change her routine, she didn’t feel comfortable doing so. To help her, I ordered something new and let her ‘steal’ a few pieces of sushi from my plate, to eat alongside her fish and vegetable dish.
I asked Caley why she needed routine, and this was her reply. “It’s one less thing for your brain to be worried about. There’s always a lot of stuff you have to deal with. At least with routine there’s something you can control. There’s something that will be the same. And when everything else is changing, you want something to be the same.”
You heard her: routine and predictability are very important to people on the spectrum. Unfortunately, this is a changing world and we can’t always have the same routines. There are several things to do when that becomes an issue.
One of these things is giving warnings in advance. Last weekend I was supposed to come visit Caley. I had planned to leave first thing in the morning to go see her, and I told her so. Unfortunately, later that night I discovered that I probably had strep throat. I texted Caley and told her that, though I still planned to come visit, it was possible that I may be too unwell to go.
I continued warning her of this possibility the next day as I waited at the walk-in clinic. Lo and behold, the doctor tested me, found I had strep, and strictly warned me not to travel. I told Caley, and she was understanding and said that having the warning of that possibility really helped her.
Caley is going through a lot of changes right now, which is why she needs more support and why routine wherever she can find it is more important to her than ever. For most people, these changes would be a cause for joy and relief. Today, Caley is getting her first car, a graduation present from our parents and grandparents. And in two weeks, Caley will be graduated from college with a degree in Public Health and a minor in Homeland Security and Emergency Management.
Both of these things Caley has worked very hard to achieve, getting her license and putting in three years of labor towards this degree, and we are all very proud of her. In fact, these changes are seen by many as the ultimate success.
Yet, they are still just that: changes. And change can be scary for someone on the spectrum, because change means unpredictability and uncertainty. So, though Caley is happy to be getting a car and graduating, she is still simultaneously frightened of what all these changes in her life mean.
If ordering a different meal in a restaurant is difficult for her, because of change, imagine how she feels going from being a student, her role for almost the entirety of her life previously, to being graduated and looking for employment. In short, it’s terrifying. So finding little bastions of routine and predictability wherever she can is absolutely essential. And having a support system helping her transition to this change is invaluable.
Hopefully, after reading this article, you understand a little better how to provide those supports to someone in your own life.
So I may have had a minor freak out on my sister in the parking lot of a restaurant the day before my dentist appointment when she reminded me about it. I told her that I had tried to say I didn’t want to go to the dentist, that I hated them, and that I really didn’t want to go because it HURT. Plus, truthfully, I was a little bit scared. She told me that I could advocate for myself at the appointment and that if I didn’t want to, I didn’t have to go. So I went.
Now, my fear and hatred of dentist appointments and all things to do with teeth have several roots (no pun intended). For one thing, I once had baby teeth that needed to be pulled, and I remember the dentist putting his knee on my chest to pull it out. It hurt a lot and I kept on spitting blood, but no one seemed to think there was anything wrong with that. Seriously, he should have figured out that by the time he had to put a knee on my chest that maybe we should reschedule an appointment and come back later when the root had dissolved more.
My other issue came from my orthodontist. For one, they never really thought that my cheeks being torn up by the orthodontia to the point that flesh in my cheeks was hanging and bleeding. I had had my tongue drilled through once as well (by accident while they changing out some of the orthodontia). Seriously, I was eight or twelve at the time, they should have expected my tongue to move.
But the biggest problem at the orthodontist was when they ignored my fledgling attempt at self-advocacy. They had just increased the length of my orthodontia and it was causing my jaw to hurt horrifically. I told them to stop, but they ignored me.
Around five minutes after they completed the procedure, I purposefully bent the orthodontia with my mouth, hoping that would force them to fix the problem. Of course, everybody got VERY angry at me. And I had to make up a story about being bullied at school because of my orthodontia so they would finally stop getting mad at me. They then left it as it was beforehand without the increase in length.
While I was bullied for other things, I definitely wasn’t bullied for my dentistry. Truthfully, they were the real bullies by taking away by bodily autonomy and ignoring my claims of pain. [Creigh’s addition: And, really, in what world is bullying to be taken seriously, but someone telling you they're in serious pain is not?!]
So, yet again, four days ago I had to attempt advocacy about my mouth…with my mouth (joke intended). I told the dental assistant about how I had a sensory disorder and that brushing my teeth and especially flossing really hurt, and that she wasn’t to floss me. She kept arguing that it wasn’t sensory, it must actually be me grinding my teeth, like she knew my body more than I did. But finally she conceded and said she wouldn’t floss me, and was kind enough to give me numbing gel while she did her work.
Unfortunately, she then decided that it was okay to floss me. I don’t know why I didn’t speak up about that. Sometimes self-advocacy just feels like wasted energy. Because after you advocate for the first time and they won’t listen, you know they won’t follow your wishes at all. I’d hoped that would have ended when I became an adult, but it didn’t.
I went off, disappointed. Yes, my teeth were clean, but my wishes weren’t respected. And the numbing gel hadn’t changed the fact that I could feel every scrape against my teeth, taste the blood in my mouth, and hear the high pitched whirring of the tools.
At the end, I dared to ask her, hey, look, do you know of a toothpaste that doesn’t hurt? And she decided I was allergic to an ingredient in toothpaste. At that point, I felt too cowed to be able to correct her. So I didn’t get the information that I needed.
Afterwards, I shared the information with my sister, and Creigh shared with me that the receptionist had asked her if she would sign my HIPAA waiver for me, or if I was competent enough to do so myself. I’m freaking twenty years old. I’m an adult. Yes, I’m competent.
Unfortunately, this sort of issue has followed me around in all sorts of areas. Including medical, where not advocating for yourself can be an incredibly big issue. Multiple of my doctors have not listened when I told them I did not feel comfortable taking certain medications. And I felt cowed into accepting the prescription. Even though I tried to argue, they wouldn’t even listen. They just bulldozed over me.
So, like the girl in the orthodontist’s office so many years ago, I had to take matters into my own hands. I simply didn’t take them. Or I’d try taking the medications and then stop taking them by myself. Which led to dangerous withdrawal effects more than once. Because I didn’t feel like I could tell them I wanted to stop and have them listen to me.
All of this could have been avoided if I was listened to. Self-advocacy is only half the story. You have to have someone to listen to your words. Otherwise you just stop advocating. Because what’s the point?
So do us Autistics a favor and please listen to us when we try to advocate for ourselves? Because it’s really hard and because we’re going to have to be doing it for the rest of our lives.
[Note: Post dictated by Caley and typed by Creigh, but these are all Caley's words.]
I’m attending a workshop about autism this week, and as I’m sitting there the presenter is talking about ‘rage behaviors’ for people on the spectrum during meltdowns. She lists a number of behaviors I’m perfectly familiar with…and gets to one that throws me.
Internalized behaviors. She says that, though our image of meltdowns is of external behaviors – shouting, throwing things, etc – some people get quiet. They’ll just go and hide under the desk and direct their rage at themselves instead of the world.
The presenter said she prefers those with external behaviors, because it’s so easy for the internalized behaviors to go undetected, and therefore go without help.
“Excuse me!” I said, raising my hand. “Could you talk some more about these internalized behaviors. Because I’m wondering if my sister has them. After she’s been getting melty [her term for almost meltdown-y] for a while, she gets really quiet. She won’t let me talk to her and she goes and hides and shuts down. I never realized that she had meltdowns, and now I’m concerned she might have been having them all along.”
I don’t remember her exact response, but the presenter commented something along the lines of how I’d answered my own question.
Later on that day I told Caley what I’d learned and asked her if she realized she was having meltdowns. She hadn’t known, either. “But you direct bad thoughts at yourself during that time?” I asked her. “Yes,” she said simply. “I just really, really, really don’t like me then.” And then she added. “That may be an understatement.”
It’s hard to help someone avoid meltdowns if you don’t realize they’re even a factor. And, though you may not have to worry about accidental property damage or self-injury, internalized meltdowns as Caley can attest to are still a very bad experience, one we want to help prevent.
That’s it. I just wanted to share the signs of, and mere existence of, quiet meltdowns with you all. Do any of you have experiences, yourself or with your child, with internalized behaviors during meltdowns?
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