It has been too long since I last posted and I apologize. This writing thing takes discipline. I have that most days. Unfortunately, the last 10 days or so have thrown me out of whack. Too much to process, too many to take care of, too much frustration. Personal and professional challenges needed attention. Lots of napping took place.
So, a very wise friend suggested I write about perspective taking. Not about how to teach our kids on the spectrum to take another’s perspective. Instead, how we all need to learn to take the perspective of those with ASD. She is so smart.
Because of her journey as mom of a very complex and misunderstood son, we have had many, many conversations about all the ways in which our kids are not understanding the world and it is mostly because they have trouble taking another’s perspective. Turn the tables and couldn’t we say that neurotypicals having difficulty while working with ASD kids are having difficulty because they, themselves, are not taking the perspective of the ASD kids?
What is timely about this topic is that Drawman is becoming more and more dissatisfied with school. Every day drags, he has better things to do, it’s boring, certain behaviors of others are distracting and disruptive, nobody understands him, nobody cares. And while much of this is just how school is for many high school kids, they have better coping skills.
If only the adults in his school world would take his perspective.
Another high school ASD kid I know (Chocolate Cake) is so traumatized by his lifelong experiences in schools that he cannot even go to school. His is a long and heartbreaking story. When I look at Chocolate Cake’s timeline of school experiences, every negative event can be traced back to somebody not taking his perspective.
Specific examples of the struggles both boys have faced follow.
Drawman is actually quite insightful and tuned into his emotions. He feels things big. BIG. And when he has BIG feelings, he needs to talk about them, find relief, make sense of it all. He can usually work it out at his drawing table writing a comic about whatever the drama of the day is. He wants these feelings put in some sort of order that makes sense to him.
As I mentioned, his freshman year started off well enough. This kid went to school ready to fully embrace the experience of high school. He found clubs he was interested in, was very engaged and participated in class discussions, took learning and performance risks. He was all in.
By January, that enthusiasm was waning. Significantly. Teachers reported he did not participate as much in class discussions. He was grumpy. He was asking for more breaks from content area classes. Drawman was depressed about school. Often times his whole weekends are filled with him expressing how painful going to school is. He gets stuck and it is maddening. I admit I have snapped at him a few times after he has said the same thing over and over and over and no matter what I offer in response, he keeps saying it over and over and over.
So, yesterday was a tough one for Drawman. He texted me from school a handful of times in the morning. He was stressed, asking how he was going to make it through the day. I texted back, as I always do, for him to use his resources, take breaks in the Autism room, doodle, talk to his Autism teacher about his feelings. I am trying to get him to use school resources when he can. He has some really wonderful people there. I cannot fix what I am not seeing. But as his mom, I can be supportive.
It seems what made yesterday worse was that one of the paraprofessionals (Ms. Bossy) that works with him and a few others in two of his classes started saying things to Drawman that, although were not appropriate by my standards, were not horrible. But what she said confused and further alienated Drawman. He panicked. Ms. Bossy has good intentions, but needs a lot of professional development about Autism and communication. Ms. Bossy was originally trained by a highly INeffective special ed teacher.
When Ms. Bossy explained to Drawman that he needed to stop blaming teachers and that when she was in school she was in the LD classes and SHE never got to take breaks. SHE just had to suck it up with no help and Drawman should be more appreciative. She also told Drawman that he was telling stories and lying about what was going on in his day per the Daily Documentation logs I gave him to fill out.
These logs were designed by me as a way to gather information about Drawman’s perspective of what goes on in the two classes he is most uncomfortable in. I wanted to understand Drawman.
Ms. Bossy takes issue with this and feels this is me blaming teachers. No, this is my attempt to understand my kid and what he is perceiving as stressors so that I could HELP. Did I understand that there were going to be accounts on these sheets that were exaggerated as compared with reality? Duh. I live with this kid. But that is the point. I wanted to see what was triggering him based on HIS perspective.
Drawman and I spend time going over these accounts and I am able to interpret some of what is going on and help him understand that much of this is not a threat. Distracting, yes. How can we help Drawman cope with the distractions that are just part of the school day? How can we help Drawman interpret some of these behaviors as harmless?
I can tell you what doesn’t work. Telling him to suck it up. Telling him how lucky he is. Telling him to stop blaming teachers. Calling him a liar. Further traumatizing and marginalizing him. Behaviorist methods.
Now, Chocolate Cake has a loooooong history full of school personnel not interested in taking his perspective. His sensory needs are significant, always have been. He is a smart kid. He is lonely. He likes chocolate cake and chocolate chip cookies. He has few opportunities to interact with same age peers. He cannot go to school. They screw it up every single time. He has PTSD because of how traumatizing school was for him in earlier years. The repeated lack of taking his perspective and holding him accountable for things out of his control has scarred him. He has experienced inappropriate use of restraint and seclusion in school. When escalated, Chocolate Cake does some very socially unacceptable things and then those behaviors are the focus rather than trying to take his perspective, trying to understand him.
From Chocolate Cake’s perspective the world is a very difficult place in which to find the right amount of structure, comfort and stimulation. Chocolate Cake is curious about a lot of things. He has passions that are not celebrated in the traditional school environment. He likes to take things apart. He takes showers to self-regulate. He paces a lot. Sitting or even standing in one spot is just about impossible for Chocolate Cake. He has articulation problems, so expressing himself in ways that match his intellect and ability is near impossible.
I am a fan of Chocolate Cake. We connect.
Nobody except his very tenacious mother has bothered to take his perspective as a way to better understand and help him. In his early school years, he crawled under tables to self-regulate, to minimize the stimulation. From his perspective, his very survival depended on it. When he was in seclusion and he started bleeding from a scrape, he needed someone to listen to him and take his perspective. He needed someone to explain he was not going to bleed out. He needed someone to take his perspective so they could provide him with meaningful explanation. Instead, the adults presumed he was just trying to manipulate them by bleeding all over. WHAT?
Recently, when substitute personnel came to his home to provide services in the absence of his usual teacher, they had trouble engaging Chocolate Cake and he reacted to their presence in a big way. He escaped upstairs to shower, he paced, he undressed, he ranted about strangers being in his house staring at him. And these substitutes were certainly judging. It was palatable. And they didn’t take their coats and hats off for the entire 2 hours. They sat at the kitchen table just observing and whispering as Tenacious Mom ran up and down the stairs as she tried to calm him and get him to come downstairs. She was sweating buckets and knew she was being just as judged as Chocolate Cake.
Let’s have a look at that from Chocolate Cake’s perspective.
- strangers came into his space
- strangers in his space wanted him to do something with them
- strangers in his space were staring at him
- strangers in his space were whispering a lot
- strangers in his space never took their coats off
- strangers are from agency (school) he does not trust
Is it any wonder he hid upstairs?
The other evening Chocolate Cake and his brother were finally able to come to some agreement about sharing their video games. At the end of the evening, the game was given to Tenacious Mom to put in a neutral space so both boys had access. Well, Chocolate Cake took it from said neutral space and brought it to his room. His brother found out and came at Chocolate Cake screaming at him how that was not the agreement. Chocolate Cake rubbed the game all over himself. One might assume he was doing that to put his cooties all over it so his brother would be grossed out and not want to ever touch that game again. Tenacious Mom intervened, extracted apologies, and then asked Chocolate Cake why he took the game, why he rubbed it on his body. Chocolate Cake said he was just so excited that this game was finally being shared, that he wanted and needed to see it, touch it, hug it.
And there you have it. From his perspective, it was just too exciting to be satisfied with the game being in a neutral accessible place for tomorrow. He was excited. He was in love. He just couldn’t get enough of it. He had to experience all aspects of it. And now that brother and Tenacious Mom heard his perspective, they can make adjustments.
Our reactions to the behaviors presented by ASD kids can come from so many places within each of us. Let’s stop and breathe. Let’s stand in their shoes, do everything we can to understand their perspective.
We need perspective training as much, if not more, than our kids on the spectrum need it.