I need to remember how often, when a child doesn’t seem to understand what I am telling them, the real issue is that they are simply focused on something else, something they consider more important. This is true of all children– they focus on what matters to them, sometimes to the exclusion of everything else around.
How often have you heard a parent giving the same instruction time and again to a child who is playing — “don’t run!” or “use your indoor voice!” — only to see the child forget over and over as they get completely lost in their activity? Not to mention the things children ask over and over — “can I get one? Please? Pleeeeease?” or “are we there yet?” — to the frustration of parents who simply don’t understand that this question is ALL that is on their child’s mind at the time.
The other day when I arrived at Rhythm’s home to watch him after school, he dragged me down the street to a neighbor’s house. I already knew that he likes this house– they have a dog, and a rubber dinghy in the driveway that he loves to touch and rub and thump to hear the sounds it makes, and stairs up to the front stoop (he loves stairs, especially outdoor stairs). It appeared that no one was home at the time, so I was willing to let him romp around their front yard.
Usually, when he and I go walking, I struggle to find a balance between letting him enjoy exploring his own way and not letting him bother other people or do anything that would result in a confrontation with the neighbors. So, I’ll let him come up someone’s front walk and examine the architecture (he loves archways), but not knock on the door or walls. I let him press his face to the window of people’s cars but not their houses. I let him cross lawns but try to keep him out of flowerbeds.
He either doesn’t understand or doesn’t care about any of the boundaries and concepts of “private property.” Of course– I’m one to talk! As a child, I regularly snuck into other people’s yards to play. I didn’t have much experience with not being allowed into places, and I don’t think Rhythm has either. At home, he goes into all the rooms at will and has to be stopped from bursting into the bathroom to say hi to whoever is using it at the time. It isn’t surprising that he doesn’t understand privacy in that case– after all, he never goes to the bathroom alone, so why would anyone else?
At the neighbor’s house. We peered in the back gate by the boat. Rhythm tromped up the steps towards the front door with me in tow, hanging back a little reluctantly. They still had Halloween decorations and fake spiderwebs up in their front stoop, and he seemed to enjoy looking at those. Then he tugged my hand towards to door, meaning that he wanted me to open it or at least knock.
“No, we can’t,” I explained, “We haven’t been invited. Also, I don’t think they are home right now.” We repeated this process a few times– him wandering and looking around for a moment, then trying to get me to knock at that door. Me, telling him that we aren’t supposed to knock on people’s doors unless they have asked us to come over and visit, that it isn’t polite.
This kind of persistence is typical for Rhythm, and as I said before, for other children as well. The difference, when I work with nonverbal children, is that I don’t know how much of their persistence is due to various factors. In addition to the intensive focus that children give to their desires, it is entirely possible that:
1) They don’t understand that I am saying “no,”
2) They don’t understand WHY I am saying “no,”
3) They believe that I don’t understand their request,
4) They actually ARE asking for something different than I think, and/or
5) They have a counter-argument to the stated reason why I refused their request, but don’t know how to express it.
We tend to ignore those latter three possibilities with nonverbal children, and this is a problem. We easily assume that these children don’t understand us, when it is equally likely that we are failing to understand them instead. Verbal children can explain further if they perceive they are being misunderstood, and they also like to negotiate — “I promise if we get a puppy I’ll feed him every day!” or “Can I stay up for just ten more minutes? How about five?” or “I won’t be scared by that movie!” or “If you let me go to the party, I won’t ask for anything else ever again!”.
Nonverbal children, on the other hand, generally lack the ability to use that level of nuance, and are stuck simply making the request over and over in the hopes of getting their point across. And yes, it is possible that they are simply being stubborn– as all children are, at times– but we should not assume that this, or lack of intelligence, are the only explanations for their persistence.
I have a wonderful example of Rhythm using a counter-argument with me. I was getting him ready for his bath one night and he gestured, quite clearly, that he wanted me to get into the tub (presumably to make waves for him. He has me do this in the kiddie pool in his yard so that he can watch the water move, and I supposed he had no reason to assume that the bath is any different). Glibly, I answered “I can’t get in the bath with you, buddy! I still have my clothes on.” He very nearly rolled his eyes at me. Then he reached over and gave the hem of my shirt a quick tug, the way I do when I start undressing him. His meaning could not have been more obvious– “Ok, silly! Take your clothes off and THEN get in the tub.” He must think I’m not very bright sometimes!
I tried not to laugh– it was such a sensible response from his perspective. I wasn’t ready to try explaining propriety to an autistic 7-year-old, so I just told him, “Sorry, it’s against the rules for me to take a bath with you.” The experience definitely taught me a lesson about making flippant excuses! Now I always try to give him the most honest reasons that I can think of for why something has to be a certain way.
Rhythm had given up, for the time being, on trying to get into the house and was walking on the low stone walls around the flower beds. He adores balancing on any sort of ledge or narrow pathway, including ones quite high up in the air, and generally holds my arm or hand to brace himself. He usually has a pretty good sense of what’s within his abilities– although he also has a tendency to terrify his mother with his idea of “reasonable” risk! He was making a strange sort of throat-clearing/coughing noise and I asked if he was ok, thinking maybe he had gotten something scratchy in his throat. He ignored me, but seemed happy enough.
Eventually he led me around to the other side of their yard, where there was another gate in the fence. Again, he tried to convince me to open it — very persistent! I started the explanation again: We can’t just go in, it’s not polite, we haven’t been invited, etc., etc.. when my attention was caught by another odd noise. At first, I thought it was geese honking, perhaps migrating for the winter, and I looked up but couldn’t see any birds. Then I figured out that the sound was coming from somewhere beyond the fence, and wondered if Rhythm had noticed the sound before I did and was curious about it.
“Are there geese in that yard?” I wondered aloud, amused. I was mostly kidding, but Rhythm’s head shot up, and I realized I was on to something.
“Wait– do your neighbors keep geese??” I asked him. He looked at me intently, not confirming yet, but definitely wanting me to continue guessing.
“Not geese… ducks?” No response. He was still waiting for me to figure it out.
“Chickens?” He nodded excitedly. “Chickens!” I practically yelled, “Your neighbors keep chickens?!” He grinned.
Then something else suddenly made sense to me, too.
“Is that what you were doing before? I get it now! You were making chicken noises! Because you wanted to see the chickens!” His odd throat-clearing noises hadn’t been perfect chicken imitations, but they were pretty darn close, and far more realistic than the “cluck cluck cluck” noise that chickens make in all the kids’ songs he listens to.
And there you have it. I have no idea whether Rhythm listened to my explanations about why we couldn’t visit, or whether they made any sense to him. But I do know now that he was trying to tell me something, too, and I almost missed it because I was so focused on getting my message across. I assumed that I knew all the relevant information, and so I didn’t pay attention to the fact that he was trying to communicate with me. Or rather, I knew he was communicating, but assumed that his message was more simple than it actually was– just “I want to visit this house” in general, not specifically “There are chickens here and I want to see them.”
We didn’t get to see the chickens that day. I explained that we’d have to come back another time when the owners were home. With the promise that he would get to return and see the chickens at a later time, he let me lead him back to his house for a snack. I have no idea whether he would have been more reluctant to return home if I hadn’t ever figured out the purpose of the visit– but I certainly wouldn’t blame him if that were true! Disappointment is frustrating enough without the added misery of knowing that your request was never properly understood in the first place.
So I will try to remember to check my assumptions, and to put at least as much effort into focusing on what children are trying to tell me as I do into trying to get messages across to them. Mutual respect and mutual understanding– these are the bonds that humans build with each other. Empathy, compassion, collaboration, cooperation: all depend on taking the time and energy to discover what is important to someone else.
This is autism: “Ooh, stimmy!” used as an exclamation of excitement. Happy flaps at interesting patterns on the water, new colors on cars, math games, tricks of the light.
This is autism: Friends with special interests and special considerations. Trying to figure out what to cook when multiple autistic friends are over for dinner to accommodate everyone’s dietary needs and sensory sensitivities = a fun challenge!
This is autism: the kid I babysit puzzling out how to tell me something on his communication device– or relaxing in his hammock– clapping his hands at the park to hear the echos– his mischievous grin– his interesting ideas (waffles with mayo? OK, why not!)
This is autism: Struggling to find the words sometimes. Avoiding loud places. Being tired out by chatter, by things other people don’t even notice. Pride in finding the right words. Strength in doing the things I can. Joy in spending time with a small group of friends.
This is autism: learning new things every day. Not a puzzle, but a journey of life, in constant flux, unfolding like a flower, full of new things to discover like a starry sky, full of complexity and hope and wonder.
We are autism. And we will not be silenced.
I hope the following letter reaches the person it was intended for… both literally (in that he sees it somewhere) and figuratively (in that he takes it to heart).
“Please re-post the following freely on the internet:
An Open Letter to the Biological Father of my God-Son:
You seem to be completely, utterly, amazingly unaware of what being a parent entails. I know becoming a father was a surprise to you, and perhaps not something you had planned on, or at least not at this point in your life. I’m sure it was a shock to you when you moved back to this state and, upon reconnecting with old contacts, discovered that you had an 18-month-old child. I know you and your son’s mother did not part on the best of terms.
And frankly, at this point, I don’t give a rodent’s right butt-cheek. Even if your son’s mother spat in your face, mocked the size of your manhood, and denied you sex for a year, I still expect you to recognize and acknowledge the full impact of the following statement: every good thing that your son has ever had in his short life, EVERY SINGLE THING, is due entirely to the devotion, dedication, hard work, struggle, and sacrifices of this one woman. You owe her his life.
You have given reasons why you cannot be more involved in your’s child’s life at this time– disability, personal struggles, the fact that you are attending college (and, to your credit, taking child development classes). You have stated that you are not in a position to provide financial support, that your current home is not child-proof. You are not ready. Neither was she. You didn’t choose to have this turn of events in your life. Neither did she.
(But, you may think– the woman always has choices! Abortion? Adoption? She looked into both. Neither worked out, for reasons far too personal and complex for me to share. She may tell you some day. Or she may not.)
You drag your feet, and life goes on. Your son grows. He has taken his first steps, and spoken his first words. He has outgrown many sets of clothing, many pairs of shoes. I know, because I was there. I have watched as your son wakes and sleeps. I have fed him and bathed him and changed his diapers and made him laugh and held him while he cries. He has needs, and those needs do not wait for you to get your life together and learn to be an adult at your own pace.
You want visitations– but in your own time, on your schedule. Your son’s mother has no choice in her schedule. Every morning, every single day of his life, your son’s mother has to wake whenever he does (and babies wake early!). No matter if she is exhausted or sick, whether she’s shaking with fever or spent the night puking her guts up, even on Saturday, even if she is hungover (assuming she ever gets time to drink with friends!), no matter how bad a mood she is in, she has to wake up between 5 and 7 AM, and feed and change and lift your child. That is how every single day of her life has started, for nearly two years.
I saw her do this less than a week after major surgery. And I saw the blood blisters bubbling up through her stitches because she wasn’t supposed to lift more than ten pounds during her recovery, and her baby– your baby– weighed twice that and had to be lifted multiple times a day to be fed and clothed and rocked to sleep. I have seen her collapse to the floor and have trouble getting up, and I have seen her turn her face away so that your son does not see how hard she is crying. I have held her hand in the ER while she screamed in pain, and I have rocked your son to sleep in hospital halls while he sobbed to the sound of beeping machines.
You don’t want to hand money over to your child’s mother without a court order, or at least a paternity test (which you refuse to pay for). But you have resources that your son’s mother does not, resources your child desperately needs. You have a family who cares, and who probably helps you financially at times. You have a stable living situation. You receive money for being disabled– which your son’s mother does not, in spite of the fact that she has been through two major surgeries in two years and requires multiple medications daily.
Your son’s mother asked for for cash to cover a co-pay for his doctor’s visit– after she had arranged for you to visit with him. You accused her of making the situation about money. Then she asked, not for money, but for things he needed– clothing, shoes, diapers, food. You bought him a single package of diapers. He goes through one of those every week, and has done so for the past 90-or-so weeks of his life.
You bought him a toy. It was a very nice toy, and developmentally appropriate. He enjoys it. But it’s easy for us to get him cheap toys at the dollar store and thrift stores– he doesn’t know the difference. I, who am no blood relation of your son, took him to Payless and Walmart and shopped for cheap sneakers and flip-flops when he had outgrown his previous pairs. (His current sneakers have pink sparkles and hearts on them. Your son has excellent taste).
And when your son’s mother was hospitalized with a life-threatening condition, and had no money and no way to pay her phone bill and no family to help her, I– a woman with disabilities and debts of my own, who works part time for less than a living wage– I took your child into my home, which is also not child-proof. And because I had no other place for him to sleep, I put your son in my own bed, between me and the wall, and slept with a hand on his tiny arm so I would wake as soon as he did.
And when he woke (before it was light out!), I– nauseous and exhausted and foggy-brained– carried him downstairs and fixed him a bottle and took him outside where he could play (and never mind the morning joggers raising their eyebrows at a woman and toddler both still in their pajamas at the park).
And when I was too weak and sick to care for him, a friend of mine, who attends college and works and has two children of her own, took your son into her house for the night, although she had never met him or his mother.
And another couple, dear friends of mine, also took him for several days, and because their house isn’t baby-proof either, they used their sofa to block off part of the living-room to keep him safe.
And when your son’s mother was broke and sick and staying up all night applying for jobs online and between rentals and desperate to find a safe place to live, a friend of mine offered to have them stay at his apartment for a few weeks. And then my housemate stayed with her boyfriend and let them sleep in her room.
And when your son’s mother swallowed her pride and begged support groups and charities and facebook for help, a woman we have never even met used her amazon account to send him diapers and a playpen that doubles as a crib.
All of these people– and others– have done more for your child than you have. It wasn’t easy for any of us. We did these things because they needed doing, and because this is what caring, responsible, grown-up people do. And still, it is not enough. Raising a child is hard, and it is expensive, and it is a more-than-full-time job, and it is not something any woman, much less one who has been through so much, should have to do alone and on an income that barely keeps a roof over their heads.
I have never used the term “man up” seriously before, but I’m using it now. You need to man up and provide support for your child. Not in exchange for getting to see him, not because a law demands it, not to make yourself feel more mature, but because your child needs it. And his mother is happy to give you visitation rights– if you treat her with courtesy and respect as a human being, and awareness of the incredible burden she bears trying to keep your son healthy and safe and happy, at the expense of her own education and career goals and well-being.
And if you do pull yourself together and handle this like an adult– without making it about You, or about Her, but honestly trying to do what is best for HIM, for your own child… If you show that you can set your own feelings aside and dedicate yourself to making his life better…. If you are willing to struggle and sacrifice and spend sleepless nights as your son’s mother has done… Then, and only then, will I respect you as a person and call you by the honorable title of “parent.”
My girl cracking herself up with scripts last night
I was once asked, “If you have so much trouble with the fact that Autism Speaks uses the words “disease” and “cure” in its marketing materials, what would you have them say instead?”
I thought about it for a moment, and said, “Well, I suppose I’d like them to implore the public to help us find ways to mitigate the disabling aspects of autism while recognizing and celebrating its more positive attributes.”
Working with Rhythm today, I came to the realization that there’s a significant time lag in a lot of his responses that I suspect is common for autistic people (children and adults) and often gets read as uncooperativeness, inconsistency, or other negative traits.
Simplest example. I asked Rhythm if he needed a potty break and he shook his head “no” (he’s quite good with using the toilet, but needs regular reminders, especially if his attention is on something interesting). A few minutes later, he signed “potty,” asking for a bathroom break, and I realized that it had taken him a few minutes to think about it, switch his attention from the current activity to focusing on signals from his body, realize that he was ready to use the toilet, and communicate that to me.
I’ve seen the same thing in other situations. I’ll ask if he’s hungry or thirsty and get no response– it seems like he’s ignoring me completely. But then within 5-10 minutes, he’ll ask for food or drink. And it often takes me a few minutes to talk him into doing something or switching activities. Getting ready for bed tonight was another example.
It was nearing bed time. He took me to the front door and said “muh!” which might have been a question about when his mother was coming home, but my best guess was “you want to go out and look for the moon?” which was rewarded with emphatic nodding– it’s so much easier to understand children once I know what things they like! We went out and looked for the moon, but it was cloudy out. Then I had to physically resist having him drag me off on an adventure for a few minutes before he finally agreed to go inside and take his bath (which isn’t usually a hard sell– he loves baths).
I rarely resort to using my adult strength against his, but it was partly a safety issue in this case, so I held him back while explaining that it was nearly bedtime and also we couldn’t just wander off at night leaving the house unlocked. For five or so minutes, you’d think he either wasn’t understanding me at all or just plain didn’t care, but then he stopped trying to get me to take him down the road and let me lead him back inside.
Caretakers, therapists, and teachers often describe this kind of behavior as “willful” or “stubborn,” interpreting these delays as the child is insisting on making their point before bending to the rules– and I think this is sometimes the case, especially in young neurotypical kids. It’s necessary, to some extent, for children to do this– to assert their independence, to prove to themselves that they have some amount of decision-making ability in their own lives– although too much of it is definitely exhausting for caretakers (after all, we’re talking about the defining characteristic of the “terrible two’s” here– the “no!” phase).
But in autistic children, I think it’s important that we take into account the likelihood that the child is simply taking longer to understand, think about, and respond appropriately to what we say. And they are probably utterly bewildered (not to mention emotionally hurt) if they are punished or treated as a disappointment for not cooperating sooner.
Processing time. Response time. These things are not the same in autistic people as in neurotypicals. Many autistic college students have mentioned to me that they dread class discussions, or other situations where they are expected to respond to something within a matter of minutes after having the relevant material presented to them– to say nothing of the difficulty with breaking into a discussion when their attention is already completely dedicated to processing what others are saying, never mind coming up with thoughtful responses and navigating the subtle social cues of when to cut into the conversation.
If we are going to design a world that works for autistic people– or even simply make the autistic people in our own lives comfortable– we need to take these differences into account and remember not to jump to conclusions about someone’s thoughts simply because their response is delayed, difficult to determine, or changes after they’ve had more time to think.
I wish I had the time and brain-focus to write about every single time I take care of “my” kiddos. It’s a wonderful experience and I get so much from them. Sadly, I’ve been realizing just how temporary a pleasure it is. Not only do children grow up so quickly, but this job isn’t exactly permanent– for me or for the families I work with. Fishy’s family has been so busy I haven’t seen them in months, and Tangles’ family moved out of the city a month ago. I haven’t had a chance to see her since, although her mom and I remain in touch and apparently she’s doing very well at her new school. I miss them both terribly, though, along with Plumpkin, an actual baby I’ve been babysitting lately, whose family has also just moved.
My most fun lately has been spending time with Rhythm. I generally care for him in the late afternoon and evening, and it’s often after a frantic day. When I’m worn out from far too much verbal input (i.e. conversation) for my comfort, drama, and/or chasing a toddler around, it’s wonderful to be able to relax with someone who just wants to sit quietly doing soothing repetitive activities. I’ve begun to feel like babysitting him is downright therapeutic for me! Even on our most stressful days, he’s such a great kid that I always leave his house with a smile.
I love the way Rhythm says “oh yeah” for “yes,” and sometimes runs several of them together when he’s excited: “ohyeahohyeah!” — with wide eyes and eyebrows up, like he just got a pleasant surprise. I love the way he nods “yes,” too, pulling his chin up with an inhalation, then bringing it down to his chest sharply, decisively, as he breathes out, as if he’s just made a very important decision. He loves to laugh, but can also be charmingly sincere and almost majestic at times, like a little prince addressing his subjects. I love the way he solemnly offers to share his food with me, holding a bite out to me earnestly and waiting for me to either accept it or say “no thank you.” I love his ways of showing affection, like taking my arm and placing it around his shoulders as we sit together on the porch swing.
He’s a real joy to be around. I hope that he will always have people in his life who appreciate him as much as I do. Fortunately, this seems to be the case. His family adores him, and at every cook-out they’ve thrown, I’ve seen how much their friends are fond of him as well. The other kids welcome him even when they don’t understand him, and he’ll wander in and out of their activities without anyone remarking on the strangeness of his behavior. I wish every autistic child could be so lucky. And I count myself lucky to know him.
It's back to school time and children all over are starting preschool. Many parents are frantically searching the internet to find out if their little ones are "on track" and know everything they should.
I wrote this article about what a four-year-old should know many years ago but it continues to be the most popular page on the Magical Childhood site.