On Consent

There have been several times where I have noticed that children with high-functioning autism have a difficult time stopping what they are doing when someone withdraws their consent.

Let’s say that an autistic child is playing around with another child. Let’s say they are wrestling around, and the autistic child is on top of the other child, and the other child is yelling for him to get off. I have noticed that it usually requires a third party to get the autistic child to stop what they are doing, or for the other child to actually resort to physically pushing him off or even hitting him to get him to stop.

After noticing it in other autistic children, I noticed it in my own son. Daniel doesn’t know when to take “No” for an answer, that when people tell him to stop doing something, he should stop doing it. He doesn’t seem to hear the person refusing or withdrawing their consent. As a consequence, I have been making  a particular effort to help him understand that you always need the other person’s consent if you’re going to do something with them. This may include something as simple as having a conversation, but it may involve play as well. And, when he gets much older, it will definitely have to include sex, to say the least. The last thing anyone wants is for their child to make that mistake.

The good news is that after only two weeks of talking to Daniel about consent and not continuing to do things after he was asked to stop doing them, this morning on the drive to school his sister asked him to stop making some noise he was making, and he actually stopped, saying, “OK. I’ll stop.” I immediately thanked him for doing so.

When I was a child, my mother would often accuse me of being “argumentative and aggravative.” I think to a great extent those two tendencies–which I have found to be not uncommon among autistics–are part of that issue of consent. Someone who is aggravating another is continuing to do what they are doing beyond the point where the person has asked the person to stop. The one doing the aggravating may not stop because they are trying to annoy the other on purpose, or they may not stop because the request just isn’t registering properly. If it’s the latter case, you can teach the person that when people ask you to stop, the rule is that you stop.

There are perhaps few lessons as important as this one to teach, whether your child is autistic or not.

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Autistic Masking

A recent trend I have seen on Twitter among autistics there involved opposition to “autistic masking.” Not all autistics can mask, but many if not most can. And that creates a number of problems for us.

I’m honestly a little torn on this issue, because on the one hand, I realize that literally everyone “masks”–you are a spouse, a parent, a friend, a child, an employee or employer, and there may be remarkably little overlap among those personas you present–and on the other hand, autistics both have to mask a lot more (like stimming), and masking is much more exhausting for us than it is for neurotypicals.

Over time, though, a lot of masking just becomes second nature. Sometimes you mask without even realizing it. For example, recently Daniel started engaging in palilalia. It was only recently that I realized palilalia was something I also did–only, I did it silently, in my head. I don’t see any particular benefit to my “unmasking” my palilalia. I’m still doing it–silently, in my head–and all it would do would be to cause unnecessary stress on others for me to do it out loud.

There are a lot of things people keep to themselves. People self-censor all the time. It’s called being polite. It’s called having good manners. You learn good manners. It’s not something anyone is born with. It’s a form of masking, and it’s a form of masking that makes you a better person over time.

However, the last century has seen a rise in what I would call the “cult of authenticity.” Everyone seems to think–or at least say they think–that people ought to be more “authentic,” that they need to be their “authentic selves.” I say that’s nonsense. I don’t want people to be their authentic selves. I want them to be better, nicer, kinder, more generous than their authentic selves–even if their authentic selves are good, nice, kind, and generous. The cult of authenticity has ruined art, poetry, relationships, and general civility. Rather than expecting everyone to rise up to greater heights, we want everyone to wallow in the shallows of their “authentic” selves.

At the same time, I can understand why many autistics are truly tired of masking. Masking is, for us, a great effort and, even when well-performed, prone to breaking down. Masking for neurotypicals is easy and relatively effortless. Masks can change in less than a moment. This is hardly the case for autistics. We have to always think about what it is that the person in front of us wants to see from us. And heaven help us if the situation changes and the mask has to change. Worse, we have to mask things that others don’t have to mask. Neurotypicals are sincerely interested in other people and stories about others people, while very often we autistics aren’t. But we know it’s important to others to talk about those thing, so we feign interest. Also, if we are allowing a lot of back-and-forth in conversation, you may rest assured that it’s only because we are artificially cutting ourselves off despite having so much more to say. This, too, is a form of masking.

I suppose the real problem with masking is that while presumably neurotypicals do get times when they can be their “authentic selves” around certain people, we too often feel like we can never be ourselves–even around friends and family. When can I stim without feeling self-conscious about it? (Of course, I also rarely stim when I’m fully comfortable, so I suppose wanting both is contradictory in nature, at least for me.) When can I just talk and talk and talk about what interests me? I pretty much never get that opportunity, and I find myself less and less able to have conversations about my interests that go on for as long as I want them to go on (ah, the beauty of grad school in allowing such conversations!).

I often put up with people touching my wrists (which makes me want to crawl out of my skin), and I have to wear suits and long-sleeve shirts (remember my wrists?) in certain situations. I’ve had to get over being interrupted when I work so that I’m not biting people’s heads off. Even then, I really haven’t “gotten over” the intense irritation I get at being interrupted when I’m working on something, especially my writing. Rather, I mask it, taking a moment to calmly move out of the zone and into a space where I can converse. But let me ask you: should I have just kept biting people’s heads off, or should I have masked that reaction? I think we should probably all agree on the answer to that.

Living in the world means masking. This is true for all people. However, it’s harder for us autistics. And we’re rarely if ever given the opportunity to truly be ourselves. Which only makes it harder. Which is no doubt why there is this movement against masking. We have been pressured into always-masking (and always doing so poorly), and many have gotten sick and tired of it. The answer, for them, is to demand from everyone that we be allowed to never mask anymore. I think there are rhetorical benefits to that approach insofar as it draws attention to what we have to do to get along (and even then, not enough)–especially if it can draw attention to the fact that masking, because it’s so hard for us, actually harms us not only through mental exhaustion, but from people reacting so poorly to when the mask starts to crack. We need people to realize what we’re doing and how it can harm us. But, truth be told, we’ll never be able to stop masking. It’s simply part of being human.

The Cerebellum and Autism

The cerebellum, which contains the overwhelming majority of neurons, even though it is much, much, much smaller than the rest of the brain, is proving to be of central importance to the traits we commonly find in autism. The cerebellum is important to processing emotions, processing language, memory, and implicit vs. explicit learning. While the article mostly talks about communication deficits, what’s of interest to me is the point about implicit vs. explicit learning, as that’s a difference I have noted several  times before. This suggests that I am right about autistics being strong explicit learners and weak implicit learners, and it also suggests why autistics have this feature of learning.

 

Autistics Helping Autistics

Medical Express has a piece on an autistic man, Kyle Barton, who lives in the Plano area and who attended UTD who has had a hard time finding a job. The title of the piece is Man with Autism Helps Design Virtual World to Make Life Better for Adults like Him. The entire thing is well worth reading, and I don’t want to summarize it. The article not only discusses his project, but goes into the struggles he’s had finding a job.

I certainly understand that struggle. Barton certainly should not be unemployed. He is a graduate of UT-Dallas and, very obviously, very intelligent. And yet, he’s struggled to find work. I have a Ph.D. from UT-Dallas, and yet the only work I’ve managed to get have been adjunct professor jobs, and temporary and part time work. I’m incredibly thankful I now have a full time job, but it’s as a paraprofessional (don’t get me wrong, I love the work I’ll be doing, but I should be making far more given my education and abilities).

While I do hope that Barton’s work will help many autistics navigate the world better and, hopefully, find and keep work, there’s a certain absurdity to someone like him or me having trouble finding employment. We seem to mostly be guilty of being socially awkward, spending too much time working at work, being too creative, and treating too many people as equals. The fact is that most people are completely intolerant of any real differences in thinking and behavior and only tolerate superficial differences.

 

Meltdowns

Daniel is 8 and he hasn’t had a meltdown in probably 3 years. That doesn’t mean he doesn’t get frustrated–or loud–but he has it under control, and I can immediately redirect him. Daniel being verbal helps, though he wasn’t verbal until he was about 3.5 yrs old.

While Daniel is able to avoid having meltdowns, there are children out there who are no more autistic than Daniel who are still having meltdowns in their teens. It’s one thing if the child is so severe that they cannot speak and otherwise have extreme difficulty communicating–the frustration of trying to communicate and having your body refuse to cooperate is without question extremely frustrating. But there’s honestly no excuse for someone who is verbal to be having constant meltdowns (which isn’t to say that we won’t have our very, very bad days).

There are several things we did with Daniel that resulted in him no longer having meltdowns. One thing we would do was hold him until he calmed down. We would also repeat his name and try to sooth him by encouraging him to tell us what happened. Afterwards, we would talk to him about what frustrated him and ask him if his reaction seemed reasonable given the situation. He always agreed it wasn’t.

We also told him that if he felt a meltdown coming on, to squeeze our hands or to count down with us from ten. We introduced these at the same time that he was agreeing the causes of meltdowns were unreasonable.

The bottom line is that we always held Daniel accountable for everything he did, even during a meltdown. We made him apologize to anyone he may have harmed during the meltdown and clean up any mess he made. We helped him communicate rather then have a meltdown, and helped him to reason through his frustrations. Autistics can be reasoned with–perhaps more so than non-autistics–and so if you’re using reason with them, their meltdowns should becoming less and less intense and coming on less and less often.

What cannot be done is to accidentally reward them for having meltdowns. Never give in. Never avoid what may lead to a meltdown, as they will learn that having a meltdown will get them out of uncomfortable situations (or simply situations they don’t want to be in). Make them talk about it (if they’re verbal, of course). While it’s true that once you’ve crossed over a certain point, the person is no longer entirely in control of what they’re doing, since the world has become extremely chaotic and confusing, the fact of the matter is that autistics are in fact in control of themselves up to the moment they have their meltdown. If that weren’t the case, it wouldn’t be possible to reduce the number and intensity of meltdowns through reason and various calming techniques.

It has been my experience that older children especially will actually use meltdowns to get themselves out of things they don’t want to do–such as go to the store, stay home, apologize to someone, go to class, or even be around someone in particular. If you give in because they have a meltdown, that will tell them that meltdowns will get them what they want. While I do not think you should punish a child who has had a meltdown the same way you would punish a child who threw a temper tantrum (since they are hardly the same thing), there should still be consequences for the meltdown, as already mentioned–apologies, cleaning up the mess, etc.

Too often we find ourselves tempted to offer the “autism excuse” to justify ongoing meltdowns or other behaviors. Somehow excuses are only offered for the most problematic behaviors that we can in fact learn to control, while we are held responsible for “minor” things that are in fact more emblematic of autism and less under our control. When that happens, we mostly end up being pitied rather than taken seriously. We aren’t given accommodations for reasonable things and given excuses for the most outrageous ones. This benefits no one–especially not us.

A Clash of Cultures

Do you have trouble keeping secrets? Do you find you typically tell the truth, even when it’s socially inconvenient? Do you tend to over-share with everyone, including complete strangers? Are you direct and to the point–to the point that people often think you’re rude? Are you unsure what is or is not acceptable joking? Or what is or is not an acceptable comment? Are you unsure why people want to talk about the same daily nonsense and don’t understand why they don’t want to talk to you when you’re the one with something interesting to say?

If this sounds like you, you may be part of a small bioculture people call “autistic.” I say “bioculture” because it recognizes the fact that culture has its roots in human biology, in neural structures. All of the normal things neurotypical humans do are part of the broader underlying human culture, of which there are many variations. Those underlying patterns on which cultures develop–which include keeping secrets, having privacy, being indirect, engaging in small talk, and understanding the social rules of appropriate comments and jokes–are simply not the natural patterns of autistic people.

I want you to imagine for a moment a culture of autistics. Imagine, if you will, a culture where everyone means what they say and say what they mean, sugarcoat nothing, are always direct, rarely if ever lie, consider fixing problems to actually be a demonstration of empathy, engage in almost nothing but in-depth conversations about a wide variety of topics, do not typically fear death, value rationality and evidence above everything else, simultaneously respect other’s privacy while also being an open book themselves, consider science fiction, fantasy and video games to be the height of culture, are science and fact-oriented, and almost everyone has perfect pitch.

How would you feel? If you’re on the spectrum, it sounds like heaven. (Would we be as anxious as we are now?) But if you’re not, how socially awkward would you be? Remember what I said about if we pathologized neurotypical behavior.

Don’t Be Rude

“Why didn’t you do X?”

“Because Y.”

“I don’t want to hear your excuses.”

“Well, you asked the question.”

“Don’t be rude!”

To an autistic person, the first question is a direct question, to be taken literally and to be answered literally. The answer isn’t an excuse; it is an explanation. So when you get mad at the answer, the autistic person doesn’t understand why you’re mad and will respond that you’re the one who asked the damn question in the first place, so why the hell are you mad about the answer? And that observation is not at all meant to be rude. It’s an observation.

Something I have never understood (and I’m writing this on this blog because of the very distinct possibility that my inability to understand it is a consequence of my autism) is why people cannot tell the difference between an excuse and an explanation. More, I don’t understand why people get mad at your answer when I am pretty sure they know what your answer will be. Why even ask the question. To me, asking the question makes you the rude asshole. Just get to the point. Say what you want to say and stop playing games designed to justify your yelling at me.

Many of the things we on the spectrum say sound rude to those who are not on the spectrum, but the same is true for us: neurotypical people sound rude all the time to us, when what you’re saying is clearly understood by everyone.