This is a two part post about the journey to helping Brady learn to play and be with people. A common challenge for children on the spectrum is relating to their peers, enjoying school experiences like recess and getting to know classmates. This post tackles some of those puzzling delays and how best to support your child. I hope that reading about our story will give you insights of your own.
Brady didn’t play with us. Or anyone.
He didn’t socialize or relate. It was hard to put your finger on it because he was talking so clearly, if we were following a routine he participated peacefully. But if the routine deviated or something happened that he didn’t expect, he melted down.
His meltdowns were constant and passionate. Naturally, they ruled me. I didn’t take him places if I thought he wouldn’t like it. This was a long time ago, but since it was the beginning of his life, it was all either of us knew. My life was our house, the yard and my immediate family. He liked his cousins but he did not play with them.
You could imagine you were playing with him because you were doing a puzzle together, or because you were doing art together. You could say “give me the yellow crayon” and he would give it to you. And if I replaced an activity with something else he liked, like if we went from a lining up the dominoes to the ball drop, he was game.
He was acquiring language very quickly and wanted to know new words or to talk endlessly about a process he had seen, like a children’s show had an episode about a surprise birthday party. It was in Word World, and everyone had forgotten Dog’s birthday — or so he thought as he looked for someone to play with him. Dog came home and all his friends were hiding inside. They jumped out and yelled “Surprise!”. Cue happy theme music. Brady talked and talked and talked about that. He was Dog, we were the friends. He asked about it. I would say, you went to visit Pig, you went to visit, Cat (or whomever) and you are crying. He loved the details about how Dog was very sad then very happy. Naturally, I asked if he wanted a surprise party and the answer was always an emphatic NO.
He loved to read a Richard Scarry book that had a paper mill and showed lumber turning into paper. He loved the conveyor belt and the journey through the building. He spent hours over a period of years studying that picture and talking about the lumber mill. He loved a sequence about building a house, it had a frame and pipes for hot water and cold water that went under the street. He could not get enough of the idea of wiring.
He was three and he wanted to look at municipal pipes and manhole covers but heaven help us if we went to picnic or a parade. I thought I understood but I really didn’t. It was so unrelenting, this insistence on process. If someone would have just said “Kerry, he has a logical brain and he loves if-then, but he has no tool to understand spontaneity and he’s spending all of his time looking for order” I would have said, “You are right.” I also think when he was 1, 2, 3, 4, and 5, those pre school years that were so lonely and crushing because of temper and the search for order that his immaturity prevented him from stepping out of that place. His same age peers started off responding to family, then parallel play. The gulf between him and his peers was not evident until he went to grade school. Before that time, it could be explained away. “He’s so smart” or “He’s shy.”
That is what it meant when a developmental pediatrician says “socially delayed.” Brady was an extreme, but when I started to work in schools I could see that there were many children that did not pick up on cues from their peers. The common response to social awkwardness or social alienation is “figure it out” or judgement by peers that the child is annoying. That’s not helpful for the child. If they didn’t learn how to relate from the simple process of being in the world with other people they are forced to learn from mistakes, or by an epiphany or cobble together misunderstandings and decide on their own version of the truth.
In the meantime, the isolation and temper with Brady reminded me of events I had long forgotten. Sad memories piled up in my head, Brady and I were not so very different. Many of the things that he did not understand confounded me as well. I wasn’t a process loving mini scientist, but I was a dreamy, horse obsessed little girl who raged at my peers in grades school, mocked my peers in high school and then changed settings and jobs before anything caught up with me.
I went to three colleges for my undergraduate, I raced through grad school in one year and then moved 11 times in my early twenties around the DC metro area. I changed jobs 5 times, but i was the internet boom and easy to jump from project to project. I thrived in rapidly changing environments with lots of novelty but put me in a setting that required steadiness and productivity and I was bored and useless. A little self knowledge would have gone a long way for me. I’m skewing it negatively now, at the time I found joy in many things, just not people. I did not relate to people very well. I think it matters. I wish I had a person who saw me for who I was and helped me close those gaps without humiliation or danger. But we didn’t recognize those kinds of challenges when I was growing up. Kids weren’t watched the way they are now, I spent lots of time outside playing after school, and in school I had good grades. I was always a social failure but it was just one part of me, and we didn’t talk about things like that when I was growing up.
True story: I remember when I was a little girl, I didn’t know how to get along with people, so I said outrageous things and seldom was honest because I noticed that people acquiesced when I lied. And I thought I was smarter or better than they were because situations changed based on silly things I said and everyone seemed to go along with it. It came from a place of innocence but it turned into trait that became a part of me. I was frequently outrageous because it was how I talked to people.
I was shopping at Kohl’s with an overflowing cart. I heaped discounted clothing on the conveyor belt at Kohl’s. I said to the cashier very dryly, “our house burned down and we lost everything, that’s why we are buying so much stuff” I’d been that way forever, just saying stuff and not caring about how someone took it. I was so matter of fact, but she was horrified and gave me a huge discount. That was a moment for me because I felt bad, like I had ripped her off somehow. But I knew I was joking, I knew I didn’t mean it. The cashier should have known it too. So I thought about it a lot and the things people said to me piled up in my brain, “people don’t expect you to say things like that” or “it’s not a normal thing to say, so of course she believes you.” I felt very ashamed and that was the end of my casual outrageous statements. It took a long time for my family to figure out that I was all done with that, people would say “you aren’t funny anymore” or try to prod me into comedy but I had a perspective check. My poor parents would have loved for that epiphany to have taken place when I was at home but it was not possible, I did not understand the limits to my perception and I didn’t trust my mother who was always correcting me but also also prone to global polite statements like “It doesn’t matter” or “that’s fine” or “that doesn’t really bother you as much as you say it does”. Because it DID matter to me, it wasn’t fine and yes, it did bother me as much as I said it did.
And so it went with me, but I really did not want Brady to waste so much time growing up, the way I did. With so much useless misery or random joys that were only mine.
When you have a child that is under 10 who has never played successfully with other children it’s not fair to heap blame on them and say “you are naughty” or “you are obnoxious”, isn’t it more likely that your child just doesn’t get it? That’s the compassionate perspective. Just like some kids struggle learning how to read or ride a bike, some kids struggle mightily with joining other children in play.
It was not appealing (or affordable) to close those gaps with interventions and behaviorists. After all, he melted down with strangers and was at his worst with new people. How could I expect him to learn in a clinical setting with a behaviorist? Car rides put me around the bend because he cried so much, I could not imagine weekly appointments. Finally, I wasn’t really sold on the autism idea yet, I had not met a professional I trusted, so I tried to sort it out on my own.
I asked myself these questions:
- What does Play look like to my child?
- What does Play look like to me?
- How do I get him from where he is, to where I want him to be?
- How can I do this, while making him feel safe, accepted and competent?
One of the most beautiful things about children is they tell you the truth about themselves. Through their responses to the world, they give you a window into their growing brain. One of the sad aspects of the early part of the autism journey is forgetting the things your child likes and focusing too much on the parts that make them different from other children. As your child matures, it can hurt how they see themselves. The negativity will new unnecessary problems if they start to see themselves as broken or less than.
So, let’s start with getting to know your child through his strengths and his truths. Respectfully. This is a move towards acceptance. Ask yourself,
- What is my child afraid of?
- What do they turn to when they need quiet?
- What do they want more, more, more of?
- What delights them?
Because I had an extreme child, I saw that children give you a map through their toys, their play. I curiously observed the play of hundreds of kids while I worked in the library, wondering about the mystery of play and my own socially isolated son.
Kids fairly shout, this is ME! This is what I am made to do, when they play. The easiest tempered kids are the ones that enjoy so many things, and float from activity to activity. The more challenging kids have strong preferences. The toughest kids are the ones that stay in their shell and don’t reveal themselves except a little bit. They might be anxious, or frightened. These are the ones I’m talking about.
The first step is always, make your child feel safe, accepted and competent. Kids don’t learn when they are stressed, if you are trying to close gaps and bring about change, you must find a way to create that security.
I think if you pay careful attention to the story they tell you when they are toddlers, you will find the seeds of their success when they are grown. The challenge is navigating that part in the middle when they are in school and creating their idea of self. I passionately wanted to know who Brady was and draw out his voice. I lured him with play. It was not terribly social, but I was confident we would grow together.
Let’s talk about social delays. You can be socially delayed without being on the spectrum, but I don’t think you can be on the spectrum without having a different way of relating to people and the world. But just because his play did not look like his peers didn’t mean it didn’t count. He was still human, he was still curious and engaged. He was just engaged on a different level and I needed to get there.
If he wasn’t going to learn from watching people than I was going to learn from watching him. If I could understand him, then I could help him create an entry to build bridges to other people. He had to find out from playing with me that people are fun too, not just sensory experiences. People can be fun and valuable just as well as a ball drop or a domino rally.
Consider instrument play versus relationship play. (Links to book where I discovered this concept)
Instrument play is regarding people are interchangeable because the object is the goal. Whether playing a sport, or a hobby or going to a movie, the goal is the activity and not the person. Instrument play brings people with common interests together. It’s not bad, but it is limiting and as a child if you are only skilled with relating to people because of a common interest than heaven help you if you like things that are off the beaten path like choral music, maps and the periodic table.
There is a danger when you console yourself that your child is so smart. I know many adults who are very bright and lonely. What use is the periodic table to a 4 year old? Brady didn’t break any new ground. He just memorized pi and I thought, that’s not going to be soul satisfying for you. A large useless talent in a child is called a splinter skill. It detracts from normal development. A splinter skill is not the same as being a prodigy. Brady was not a prodigy. He was just like a kid that was tilted all the way on the see-saw and completely out of balance. He had a rigid sense of play and introducing novelty created enormous stress.
Relationship play is when you postpone a pleasurable activity because it will be more fun with a particular friend. Again, you need balance here. What if you are so intent on the friend that you never figure out what you like? Lots of adults are walking around with no idea what they are really good at, what resonates with them. It’s good to have special interests. However, Brady did not know how to cultivate that friend. And honestly, I’m not sure he even knew what he was missing. But there was plenty of time for that lightbulb to come on.
I needed language to describe what I was seeing at home--I was so confused, so overwhelmed. That’s why I’m writing it all down now. It’s cathartic for me and I hope my story resonates with someone like me, googling at home, wondering what path to take. The word “autism” was such a choatic, sprawling nightmare but reading words like “instrument play”, “rigidity”, “Splinter skill” I thought, that’s him, that’s my child.
I started by looking at what Brady liked. He liked strong graphics, he liked predictability. He liked logic and order. He liked music and color. He did not like new people or any people really. He did not like surprises or change. this is his favorite video from when he was 2, you can see the strong insistence on order and sequence here.
It became a matter of finding out what scared him and eliminating those things. And then finding out what he liked, really liked, and making that list longer and longer.
At home his play was very logic oriented –very if/then. Lots of memorization. Between 12 months and 2 years he built up a large vocabulary. He liked classical music, puzzles, colors, sensory toys. I relied on these toys to help calm and soothe him.
These are the things I did that did not work very well:
I joined mom’s clubs, I took on leadership positions, I tried to be a great hostess so that people would like me, would like US, so that my son would have someone to play with. I was that mom that you could drop your child off at while you ran errands. I was so eager to give him chances to play, to make friends. I reinvented myself over and over, but at the base of it, he remained the same. I was burnt out from all the free babysitting where he melted down behind a closed bedroom door. Max was 2 1/2 years younger but he ended up playing with the kids that I brought over for Brady. I became quite the little camp counselor. And wasted enormous energy getting nowhere.
I spent hundreds of dollars on toys. I bought anything that I thought he might play with, and imagined him sharing it with a friend. He kept to his blocks and marble runs, puzzles and blankets. I gave away the Imaginext, the Geo Trax. We had a good run with My Little Pony, he memorized the ponies and the songs but did not play with them. I decided he liked the ponies because they had their personalities written on their flanks like a sign. He wished we all wore signs saying who we were and what we were like.
The tide started to turn when I:
I borrowed a child development textbook from the library and I read about Play. I’m not going to rewrite it here, but if you are a nerd like me and can manage it, spend a few hours and read about the mechanics of play. If you catch yourself blaming other children for being mean or unkind, read about play and look at it dispassionately. I don’t remember what the exact book was, but I remember it was very helpful to start breaking down play into discrete parts and figuring out goals.
If your child fails to make friends and get along socially, it is not because everyone/the school/your town is so mean. It’s not because they haven’t had a chance to play, or don’t know anyone and it’s not about the toys. But it might be because they don’t comprehend people and how to join play.
- Make your child feel safe, accepted and competent (in our case that meant lots of routine and very few visitors)
- Remember that progress occurs through area of interest (so what does your child like?)
- Read about child development milestones tied to play and socialization to get a language for what you are trying to cultivate
- To read about the patient path to friendship, follow the link to this post, about our experience with Play Therapy. It has a happy ending.
- Remember that there are no hopeless cases.