Category Archives: Autism

Running with armor

I find the greatest challenge in advocating for my sons with “needs” is finding the words to describe the challenges they are facing so that we can all approach the problem from the same perspective. I’ve tried a number of ways to explain, with various levels of success. If I feel that there are gaps in understanding, I dig deep and try to find another way to explain. I find myself in that position again.

Jeremy is currently acting out in a way that we have never seen before in the last few years at his current school, and the staff at the school seem to be baffled… or at least slightly taken aback by it. Unfortunately, it’s because of stuff we’ve been explaining in one way or another for years.

So I try again.

No idea who this is, but apparently its in crazy hot Phoenix, so kudos to him for the illustration.

My autistic sons have social decoding deficits, which means that they can’t read your body language or tone and get any kind of predicted meaning. They might try to read you, but without significant effort at relationship building, they are often wrong. When we have a conversation, we can “read” the current disposition of our audience, and we can generally tell if it’s a good time for the conversation, if our message will be received and because of that we can predict the possible responses from our audience before we even say the first word. My sons can’t do that.

Imagine loving humor and wanting to be funny and you see an audience that is prime for a good joke and you tell one that has been well received in the past, and instead of laughing, your audience starts punching and kicking you. Some times the joke is well received and some times you get kicked and punched. You would very quickly start to either avoid those jokes, or like in my boys’ case, you would approach the joke with a certain amount of fear. For the sake of my analogy later, let’s say that every time the outcome of the conversation is bad, that’s like getting hit with a rock. Let’s define getting hit with a rock as getting “unexpected reactions to social interactions with significant consequences”. For example, a friend not “getting you” is not as significant a consequence as a teacher reacting badly because they didn’t understand you.

Here’s a more practical example. Jeremy has a written output disability and major verbal processing deficits, which means there could be amazing things happening and computing in his brain, but in conversations or written output that require problem solving, it requires a TREMENDOUS amount of effort. So imagine that there is a problem in a class, like needing help with a question. Jeremy has to use all the effort that he can muster to awkwardly ask for some help… expecting the teacher to offer help in-line with the complex computing that is happening in his brain. He might actually use words that come across blunt, or seem rude, or overly simple, but he’s fighting through his disability to just ask the question. Remember that he can’t read social cues, so he might ask at a bad time, or when the teacher or SEA is obviously preoccupied with something else. Regardless, he’s expecting the help to be helpful and respectful. Instead he gets hit with a rock. He might get talked down to, or scolded for sounding rude, or the answer might be completely different from what he was asking. All rocks.

Facing this day after day, week after week, year after year is trauma. It is heartbreakingly difficult. And the result is that my boys go to school with armor on. They are knights, who don their steel exterior and bravely go off to the uncertain world of school. Some days they get hit with rocks… some days they don’t.

What they need is something or someone that says, “I get you. I understand. You are safe.” They need the trust that it is ok to take off the armor. If the armor could come off, they could divert that energy to the challenges in front of them, rather than bracing themselves for the fights that may or may not happen on any given day.

Right now, my sons line up every day to run their race. They line up mostly with kids that are not wearing armor, and a few that also have armor. The weird and twisted part of this race is that the kids that run the slowest will have rocks thrown at them. It’s a catch 22. If they take off the armor and run at full speed, they will avoid the rocks. But if they are convinced that they are going to get hit with rocks (unexpected reactions to social interactions with significant consequences), then keeping the armor on is the only logical option.

We were recently introduced to Self-Reg by Stuart Shanker. Great Book! It explains a lot about both of my boys. The over-simplified generalized synopsis is that there is a finite amount of energy that can be used for various mental tasks. If there is anxiety (armor), then the energy used to deal with that is stolen from other mental faculties. In order to be successful in those areas, you first need to self-regulate and bring the anxiety back down (take the armor off), and then you will have more energy for everything else (you can run faster when you are not carrying the extra weight of armor).

Some practical examples:
My boys can explain things, even complex or uncomfortable things really well if they are calm, but not if they are being yelled at, or talked to harshly.
My boys can deal with difficult tasks and perform very well academically, but not when there is stressful time pressure.
My boys can show tremendous understanding and comprehension when they can verbally recite it or even type, but not when they have to write by hand, or are scared that they will lose marks for punctuation.

I was recently told that Jermey didn’t follow a direction that was given when he was “calm”. This is a misunderstanding about a lot of people with autism. They don’t understand or decode social cues, so they don’t know what normal facial expressions are. So, he wears expressions like clothing… like a mask. Based on his diagnosis, he’s always a little anxious. When he’s being scrutinized by people that he doesn’t know “get him”, he will be very anxious. When he is that anxious, he has a hard time decoding things like basic instructions. It’s not like it’s a lost cause… it would just take a few prompts or reminders. If he knew that he was safe to mess up and would get a few reminders, then… and only then… would he actually be more calm, oddly enough, that would result in not needing prompts.

Jeremy had things go very badly because of this type of problem, that ultimately resulted in him being so misunderstood that he was traumatically dismissed from the famed Harrison Hike. He feels very traumatized and as a result has doubled up on his “armor”. He doesn’t feel safe. Not because the teachers are mean or have anything against him. He just cannot predict how any interaction will go, and through the thicker armor he is misinterpreting what is happening around him, which makes the situation worse… far far worse. He is terrified to go to school and he is terrified to miss school and perform badly.

It’s not a coincidence that the people at Jeremy’s new job are really laid back and chill, and that they can’t detect any discernable signs of any handicap. I’m sure he’s a little awkward, and might require direct instructions instead of “hints” to do things, but because they default to calm, it’s not an issue.

We are advocating for a specific assigned SEA (Special Education Assistant) for next year that will provide Jeremy with, among other things, a consistent liaison to help with this type of communication. He doesn’t need a babysitter… he’s quite a capable young man. He just needs to know that it will be safe to try to communicate and he can take his armor off. And that if communication goes badly, he doesn’t need to put armor back on, he can have the help to clarify. It needs to be a specific SEA that can connect with him and that can “get him” and build relationship with him.

This is not how the school has assigned SEAs up to this point, but its what he desperately needs.

My son had a seizure

When I was 11 or 12 years old, I went to stay at a family friends house and they had a daughter about my age. We woke up early in the morning and started playing a board game. About halfway through the game I was winning and the girl knocked all the pieces off the board, and I considered that very unsportsmanlike. But she kept wiping the board off and she was lying on her side and her eyes were rolled back in her head, and for the first time in my life, I was watching an epileptic seizure. It was slightly terrifying, but her father came and supported her head and spoke soothing words and rubbed her body in a calming way, and soon enough she was back. She was tired after the episode, and laid down for a while, and the rest of the visit was quite normal.

Yesterday, we were going out to celebrate an important milestone for one of my daughters by having ice cream for dinner. This is by far the most favorite meal for my son, Josiah. If he can get his hands on a bucket of ice cream, he will consume all of it in one sitting, which is sometimes handy because he doesn’t consume enough calories most of the time.

The night before last, we stayed in a hotel and Josiah had trouble settling and only got about 4 hours of sleep. He also got a pair of hand-me-down roller blades yesterday and he was excited about those. At the point that we were trying to go get ice cream with my daughter, he started to head out and roller blade. This collision of thoughts and desires coupled with a lack of sleep was enough to knock him in to an autistic meltdown.

Above is a picture of him sitting on the sidewalk, stuck. I got out of the van with the other family members and sent them on their way, and I just sat with him there on the sidewalk. He desperately wanted to roller blade. He desperately wanted to go get ice cream. In that moment he was unable to switch the mental gears and was stuck. What came out of his mouth, was yelling, “I don’t want to get in the van; it’s boring! There’s nothing to do in there!”. Yelling that over and over and over at me, his father, on the sidewalk.

Josiah has been having trouble at school. The comments we get back are about how he is being defiant, and stubborn, and on one hand I cannot fathom how someone could view this precious, loving, wanting to please, little autistic boy as defiant or “non-compliant”. On the other hand, I totally get what it “looks like”. As his parents, we struggle so hard trying to figure out how to advocate and educate about what is going on.

After sitting there for quite some time, he began to be able to say a few things that were really bugging him about it all, and even then, it was barely related to the actual problem. He was finally able to start to think about it all, and then he broke down in tears… “Dad… I’m really sorry I made everyone sad… I don’t know why I get stuck.” That’s where my heart breaks. In the core of his heart, he cares about others and he knows that his episode messed up the family plan. And HE KNOWS!!! HE KNOWS THAT HE’S STUCK!!! But in the moment, he… just… can’t… break… free!!!

I went to bed with that on my mind and I woke up this morning with the image of that board game 30 years ago, and the scene of that epileptic seizure. It hit me, that what I want for Josiah is for the people around him to understand that his mental lock-downs are very similar to a seizure, and that the needed intervention should be similar as well.

His mind is a race car that runs full throttle, but he’s only got racing slick tires on. No matter what is going on in a class, he’s always farther down the road than you think… but he’s really bad on the corners. If he isn’t prepared for a corner coming up, he’s going to slide off the road. You can keep him on the road with giving him a map of the track, so he knows when the corners are coming up, but if that gets missed and he slides off the road there are a few things from the epileptic analogy that will help.

  1. It’s not an inconvenience. It’s a medical problem that requires intervention and if you have to call someone to the classroom to come help, then do that, because leaving an epileptic seizing on the floor would not be acceptable, and neither is leaving my son in that place for any length of time.
  2. It’s not a choice. No matter what is coming out of his mouth, if the responses to your words are not cohesive and reasoned, then he is stuck and he can’t help it. You would never discipline a child for having a seizure, and you should never discipline or tell my son that he is a disappointment because his outward expression went off script.
  3. Something set him off and only peace can bring him back. For epileptics, it could be flashing lights or unexpected noises or too much stimulation, but something sets off the seizure. More flashing lights, and more abrasive noise is not going to help then calm and settle. For my son, something, maybe something that’s hard to discern, but something unexpected happened or is about to happen and he feels out of control and his brain has hit a panic button and set him off. No amount of threatening, or scolding, or explaining, or even physically trying to move him, or acting frustrated is going to bring him back. Only, when you can sit with him and tell him that it’s going to be ok, and calmly touch his arm, and tell him that you know it’s hard, will he be able to feel peace around him and start to open up.
  4. It’s a heavy weight to carry. When all is said and done, and things settle down, he knows what happened. He knows that his meltdown affected those around him. He feels bad about it, and he desperately wants to find a way to stop it happening, but he can’t. When my friend at 11 years old came to, she apologized. I felt bad for her and I felt a little bit awkward like I had seen something that was deeply intimate and difficult, but I certainly didn’t blame her; I felt bad for her. If a teacher or SEA is working with my son, he should not end up feeling shame… under any circumstances.
  5. He wants to participate. He’s terrified that something that set him off before will set him off again. He’s scared that people who unexpectedly got mad at him before will get mad at him again. If an epileptic was sensitive to unexpected noises and there was an experiment in class that might make a “bang”, it might help to pull them aside and tell them that what’s coming so they could be prepared. In the same way, if people come around him and make him feel safe, and he gets some information about what turns are coming up and he feels in control of his environment, he really wants to paint and make music and share with his peers.

It’s tough advocating for a child with a hidden disability. It’s heartbreaking. I cling to the hope that some way of explaining things will make a difference. Hopefully this helps… If not, I will keep trying, because my son will understand one thing… He’s worth it.