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.
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.