One of the biggest challenges in autism parenting is ‘reading’ your child. Whether they’re nonverbal like my little boy or even if they have some words, it can be very hard to know how much they can understand of the world around them. Flowing from that of course is the other need – to make sure that they can communicate as well.
Michael is three and a half and recently he has started to understand a lot more than he has in the past. There are a few ways to tell although none of them (as I will repeat many times) are foolproof
Do they react
My main way of telling if Michael understands what I am saying to him is by his reaction. In my case this works because I know he does react when he understands. Usually he reacts very quickly. For example if I say dinner time, he will run to the table and sit on his chair. If I say bedtime he will go to bed (well sometimes he doesn’t but he is three so…). I might say ‘let’s find your pram’ and he will go and sit in his pram, or I might say ‘I’m going to find your iPad’ and he will follow me around the house until I find his iPad.
This morning he woke up at 2am and wanted his breakfast. I told him ‘it’s the middle of the night, you can’t have breakfast now’. He had the bottle of water I offered instead, whinged a bit, and then went quietly back to bed and fell asleep. It is not clear exactly which words or how much he understood. I’m not sure if some of it was from context or from gestures. But he generally understood what I meant.
In all these cases he reacts immediately. Sometimes he ignores me, but if this only happens occasionally it is obvious that he understands what I said, he just might not want to go to bed right then, or maybe doesn’t want to go home in his pram. He’s not a robot, he’s just a cheeky little boy. Often I have to repeat ‘stand up’ about six times to get him out of the bath, because he doesn’t like to stand up and he likes sitting in his bath.
This will not work on children that don’t react to anything either way. With them you cannot really know if they just don’t understand ANYTHING, or if they are simply too overwhelmed or not in control of their body enough to react.
There are several nonverbal autistic adults on Facebook, as well as writers and bloggers. Many of them say that they always understood what others said but couldn’t do anything about it. Like they were locked into their bodies. They said to assume a person can understand you at all times.
But here’s the thing. What age are they talking about? Did they understand everything everyone said at age one? Two? Five? Ten? How do they remember? My son clearly understands more at age 3.5 than he did at age 1. And will understand more at age 5.
Add to that the fact that the ones that don’t understand and cant’ respond, also can’t write messages on Facebook or books. So you never hear from them. Their families are usually too busy looking after their needs to be a constant presence on Facebook either. If you assume that someone understands something, it means you give up on teaching them that thing. What’s the point in teaching someone basic words like ‘ball’ and ‘sock’ when they probably understand full sentences. But it is surely better to teach someone something they actually do understand (but can’t tell you they do) than not to teach something because you assume they already know it (based on nothing whatsoever).
So I always test. It can be very easy to read into someone’s actions and assume they understand. But you can’t do that with an autistic child. You have to check. For example, Michael loves to nod and shake his head all the time. It’s a movement he enjoys. But I can tell you for certain that he doesn’t understand that a nod means yes and shaking your head means no. So assuming that he understands and is just non compliant or is just ignoring you, can be very unfair to him.
I test by taking something I know he wants and using that. So I always first check which object he wants (by offering him a selection and seeing what he reaches for) and then making him communicate that he wants it. It can’t be through speech so I use pointing, or PECS. Pictures are always a good way to test understanding as children with autism often learn better visually. The only way I know for sure if he understands his PECS pictures is if I put a few on, and then he gives me the right one. Not just occasionally, but every single time. Remember if there are two pictures, he will give the right one 50% of the time even if he is guessing.
Make sure they are paying attention
Parents, especially the primary caregiver, will usually know the most about how much a child understands. Everyone else can only ever offer advice. You can see how they react on a day to day basis to what others around them say or do.
But often an autistic child will not react not because they don’t understand, but because they aren’t paying attention. I can talk ‘at’ Michael as much as I like. But if he is concentrating on stimming at the time, or running backwards and forwards, or looks like he is engrossed in another activity, he will not hear me. It probably works the same way with your spouse. If you see they are engrossed in an activity, or they are particularly upset about something, then you don’t usually try to talk to them. First, you get their attention. Then, when they are free to listen, you can talk.
If Michael is throwing a tantrum. If he is busy with something or running or really excited, I do not expect him to follow instructions. Otherwise I am setting him up to fail. I may as well talk at him while he is asleep. First I always establish attention. With Michael, this involves sitting down at his level and waiting for eye contact or just waiting for him to finish his task. Touching him on the shoulder. With another child it may involve something else.
Reuse key words as much as possible and accompany with gestures
When I talk to Michael, I use key words a lot. I talk to him in English the way I would want someone else to speak to me in French. So often I will pretend I am on exchange in France, living with a French host family. I have a very basic grounding in French. If everyone in the family talked at me quickly and in full sentences, I would not understand even the words that I know. And I wouldn’t learn any new ones. If they slowed down (especially at first) and reused the same words, repeated them in different contexts, and maybe only spoke using one or two at a time, I could understand them. And learn new words.
So I explain everything I do to him, all the time. But using simple language. If he reaches for the cauliflower on the dinner plate, I say ‘you want cauliflower’. If he pushes away the zucchini, I say ‘you don’t want zucchini’. At all times when he tries to communicate with me, I use simple (one or two words) to say out loud what he is trying to communicate. Maybe accompanied with PECS, maybe without it.
With Michael I try not to use any extra words. If he is playing with a ball I just say ‘ball’. I don’t say ‘oh look at that ball, it’s such a cool ball, it’s a blue ball!’. Just ‘ball’. Maybe ‘give me ball’ or ‘catch’ or ‘throw’. But no more than that.
Just watch them
So often as parents we put on our therapist hat and we try to do as much as possible as quickly as possible. Yet some of the most useful periods I have had with Michael were when I did nothing at all. One of the reasons I don’t think parents should do more than 5 hours of therapy a week themselves, is that it leaves no time to be a parent. And being a parent is very important. Just sitting and watching your child. And also listening to your therapists.
What do they like? How do they react to different situations? Watching really closely and being (above all) skeptical. Does that approach work? If your therapist told you that she noticed him paying attention to books, can you capitalise on that? Just listening, watching, and noting every single change (and there are so many changes!) will mean you notice the things that otherwise you might miss. How there’s more eye contact now. Or less. That he’s changed his favourite stim, or he is doing less of it, or that he likes water play with warm water but not with cold.
The most important and best way to know what your child understands, is to encourage them to communicate their needs. Whether through pictures, gestures, words, or on the iPad. Whatever works. Their biggest asset will be their ability to communicate their needs, not just to you as a parent who knows everything about them but to peers, teachers, other people in the community. That is what therapy should be about. Then maybe one day they will be able to tell you themselves exactly what they understand.