Bullying or Joking Around?

Today my wife went to The Warren Center to attend a presentation on bullying and special needs children. The presenter suggested that we encourage Daniel to engage in self-advocacy, that we perhaps should have his teacher discuss with the class the fact that Daniel has autism and what that means–if Daniel agreed to it (which he has), and that we role-play certain scenarios.

We decided to try a role-playing scenario. Anna pretended to be a mean girl insulting our daughter, Melina; then, I pretended to be Melina’s friend just joking around.

Anna: Oh, hi, Melina. Wearing those glasses you look like a real nerd.

Me: Was that mean, or just joking around?

Daniel: It was mean.

So far, so good. I then went.

Me, in a playful voice: Hey, nerd! What’s up?

Anna: Was that mean, or just joking around?

Daniel: It was mean.

There’s little question that anyone not autistic would have very easily picked up that I was joking. If you’re an autistic adult, you would probably even pick up on it from the umpteen times you’ve seen people interacting just that way and having a laugh about it. But Daniel just turned 9, and he’s still learning.

The problem is that we cannot trust Daniel’s judgment on whether or not he’s being bullied. He’s saying his friends are being mean to him, but it’s not impossible that his friends (assuming for a minute he’s making the right judgment that they are in fact his friends) are just joking around with him and he’s misunderstanding the social situation. He also wants to be loyal to his friends, so he is loathe to mention anything negative about them. He doesn’t want to lose the friends he has, regardless of how they may (or may not) be treating him.

Hopefully, if and when his classmates are given the presentation about Daniel’s autism that the bullying will stop. We’ll probably have to have them address the issue of Daniel’s difficulty understanding playful banter among friends, where you insult each other to show camaraderie, precisely because Daniel doesn’t understand it and may be mistaking it for being mean.

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Sharing a Co-Morbidity Doesn’t Mean Autism Doesn’t Exist

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My wife shared this image on Facebook. The things surrounding “autism” are all things that can be co-morbid with it. For example, I have general anxiety disorder–meaning I have anxiety all day every day–but I don’t have Tourette’s. Not everyone who has general anxiety disorder has autism, of course, but if you are autistic, you have general anxiety disorder. And not everyone with Tourette’s is autistic, but a higher percentage of autistics have Tourette’s.
 
There are those who think that having daily rituals is having OCD. Having rituals is not really quite OCD. Rituals are a way to create order in life, and is therefore something you will find autistics doing at much higher rates than, again, the non-autistic population. True OCD would involve someone who cannot leave a room without turning the light switch on and off exactly 15 times each time, or who gets “fascinated” by a shoe for 30 minutes straight. Or it may involve being unable to stop thinking about something all the time–such as sharks, for example, or in my case, self-organizing scale free network processes. The benefit of having what one could call “OCD thinking” is that one can become a scientists or scholar, and then you’re actually paid for what you can’t stop thinking about. You can get a Ph.D. with that way of thinking.
 
Of course, if you’re always thinking about certain things, if your brain is always running at 150 mph, you may have a hard time paying attention. My own hyperactivity is mostly in my thoughts, but Daniel has a hard time sitting still unless he’s involved in his obsessions. Which simply means his hyperactivity is internalized.
 
These things themselves come from the fact that the autistic brain is dominated by positive feedback. Complex systems like the brain have a combination of positive and negative feedback. Negative feedback helps to keep things in equilibrium. The thermostat for your heater/AC uses negative feedback to keep the temperature the same. If you had a positive feedback thermostat, the hotter the room became, the hotter the heater would try to make the room. Things go faster the faster they go. Hyperactivity then occurs because you’re getting overstimulated. This can then push over into a situation where you become overwhelmed by the situation. Reactions to this can include extreme escape behaviors, banging your body against a wall while becoming non-responsive, or having an outright meltdown where you cannot control your actions. The overstimulation occurs in no small part because we also have sensory integration disorder. That means we have a hard time separating out visual input from sound from touch from all of the rest of our sensory input. I experience it as a feeling that my mind is being crumpled up like a piece of paper and everything goes black.
 
I also come with some extreme sensitivities. I cannot stand to have my wrists touched. I jump every time someone does that. I want to remove my skin to get away. But I try to downplay my reactions because people will just think it’s “weird.”
 
Autism is a fundamental structural difference in the way the brain is wired and works. It results in a very distinct set of behaviors. Yet, it is a spectrum, and that spectrum goes from truly debilitating (what is now called Autism 3) through “high-functioning” (Autism 2) to Asperger’s/Autism 1 and, I would argue, ADD/ADHD. Yes, most of the elements which are often co-morbid with autism can be found elsewhere. I have a slight tendency toward manic-depression, but there are certainly people with manic-depression who aren’t autistic, and there are people with crippling depression who aren’t autistic. Yet, those are found among autistics at much higher rates.
 
Those who like to throw around the argument that “autism” is a “mere label” are really just trying to downplay some very concrete elements of reality. There are some things that are “mere labels,” and some things that absolutely are not. Having structural and biochemical differences in my brain that result in my mind being very different from non-autistic people isn’t a label. It’s an acknowledgement of that reality. I’ve enjoyed the giftedness and even the OCD that has come with it. I couldn’t have gotten my Ph.D. without it. And yet, my sensitivities and “weird” behaviors have definitely affected various aspects of my life. One of the best things to have happened to me was for me to realize I was autistic and to get officially diagnosed. It cleared up why I was argumentative (have ODD), why I couldn’t understand why everyone else wasn’t as rational or couldn’t see all the complex patterns I could see. It cleared up why I have all my sensitivities, why I think the way I do, why I avoid being in the middle of large groups of people, why I have blackout and movement seizures, why I have a delay in my response to people, and why I can get confused if people don’t give me the processing time I need.
 
The benefit of knowing I am autistic goes beyond that. Now I’m no longer just that weird person who doesn’t like to socialize who inexplicably alternates between being wonderfully kind and friendly to appearing to be rude (from failing to notice things going on or being confused about a given situation). Those behaviors are now able to be explained. Which doesn’t mean I shouldn’t have someone say, “Hey, so and so said hi to you.” I do. It helps. Nor does it mean I shouldn’t have certain behaviors pointed out to me, because when they are, I become more conscious of them and the fact that they may make non-autistic people uncomfortable, so I should try to change that behavior. At the same time, there’s always a degree to which we cannot help our behaviors. In a room full of autistic people like me, the non-autistics would stand out and it would be their behavior which would seem out of place. And if we insisted they fit in, they would seem socially awkward and would have an extremely difficult time fitting in.
 
The long and short of it is that autism is a real thing with real behavioral and cognitive differences in those of us who have it. It’s important people know Daniel is autistic. That way people can understand that if he’s in a situation with a lot of people where he’s being completely overwhelmed that he’s not an out-of-control brat who just need some strong discipline to straighten him up, but actually cannot integrate what is going on, positive feedback is dominating, and he’s so completely overwhelmed he shuts down until he resets (in a closed system like the brain, positive feedback doesn’t run away forever, but rather creates cycles). I want people to understand that. I want people to adjust their expectation and to make room for “odd” behaviors so they can reap the benefits of our existence.

Palilalia

Over the past several weeks I have noticed a new pattern in the way Daniel speaks. He will now say a sentence, then repeat the last part in a whisper (in a whisper). This is a speech disorder, or complex tic, known as palilalia. And, no surprise here, it can be found in autistics.

As I just noted, it’s a complex tic, meaning it’s not dissimilar to my own tics, or movement seizures, which are of course connected to my own autism. My movement seizures also developed later in life, so it’s not surprising that Daniel has developed this one later, at 8 years of age.

There doesn’t seem to be much about palilalia on the internet, so there’s not much I can discuss about it for the moment. I have found some discussions of its relationship to echolalia, but echolalia is the exact repetition of phrases and sentences spoken by others. It’s also found in autistics (and it something I’ve done for years, repeating things from TV and movies and integrating them into my usual speaking repertoire), but the two differ primarily in the fact that palilalia is a repetition of one’s own self-generated sentences.

There’s nothing like autism to introduce you to interesting little things the human brain sometimes does.

Processing New Information, Daniel-Style

Daniel’s on a roll.

Just now:

Daniel: What’s a step-brother?

Anna: Well, if I got married to someone else, and he had a little boy, that little boy would be your step-brother.

Daniel: You can marry other humans?!? That’s cool. I want a bigger family.

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Earlier today:

Daniel: I’m going to make a Bible. I’m going to draw the story of Adam and Eve, who were made with the Earth back when God was alive.

Me: Oh, that sound interesting.

Daniel: When’s the Earth’s birthday? How old is the Earth?

Me: The Earth is 4 and a half billion years old.

Daniel: 4 and a half? That’s old!

 

Bees Aren’t Nocturnal

The other day, we came home after sundown. I opened the side door of our minivan and Dylan, who is 6, asked me to lift him down. I grabbed him, and turned around to pretend to put him in the flowering bush next to the driveway. Dylan started objecting, “No! There’s bees! There’s bees!”

Daniel, from the back of the van, said, “There aren’t any bees. It’s dark and bees aren’t nocturnal. So you don’t have to worry about bees.”

Anna said, “Only our kids would have this conversation.”

Daniel’s Nomination Speech

The entire 2nd grade class at Arapaho Classical Magnet is going to elect a president for the entire 2nd grade class. Each class has nominated a person, and next a second round of speeches will result in all the 2nd graders voting for a class president. Any student who wanted to participate could do so.

Daniel came home very excited. He said that he had an opportunity to give a speech to his class and he wanted to give a speech on sharks. It was a few days before we found out that the speech was to get his classmates to vote to nominate him for their class. When we told him what the speech was really about, and that he couldn’t just give a speech about anything he wanted, he lost all interest in giving it.

Fortunately, Anna pushed him to write and give his speech anyway. He had been so excited to give it, and we were excited that he wanted to do it, but Daniel didn’t want anything to do with the speech afterwards. So Anna proposed that Daniel could make his platform about getting his teachers to teach more about sharks during 2nd grade.

Naturally, this would seem to be the perfect solution. But equally naturally, nothing is going to be quite as clear-cut with Daniel. “What if the teachers show a video about a shark eating a dolphin? Then they’ll just hate sharks more!” I managed to persuade Daniel that it wasn’t likely they would show a video like that if they taught more about sharks. Satisfied, he agreed to write a speech encouraging people to vote for him on the platform that he would get the teachers to teach more about sharks.

Anna sat with him and helped him with the speech. It was a negotiation between informing people about sharks and trying to get people to vote for him.

The teacher recorded Daniel giving his speech.

It will probably not surprise anyone that he didn’t win on an all-shark platform. However, we are very proud that he actually wrote his speech–the longest thing he ever wrote–and gave his speech in front of the class. It was no small thing for him to do.

Daniel Wins the Fantastic Falcon Award for Exhibiting Compassion

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Today Daniel’s teacher awarded him the Fantastic Falcon Award for Exhibiting Compassion during the 3rd quarter. Every quarter each class at Arapaho Classical Magnet gives out non-academic awards to students for things like helpfulness, compassion, and resilience. In the past the awards were less specific, meaning the teachers could interpret the awards however they wanted. This time, they gave out two, with the specific criteria of compassion and resilience.

I’m guessing one would have a hard time convincing Daniel’s teacher that he doesn’t have empathy!