My son is becoming increasingly distressed by certain situations and I’m really struggling with how best to support him. He’s 3, has mild ASD, and is very verbal. He’ll be totally fine, and then someone talks to him or to me, or I talk to someone, and it’s almost a meltdown. I’m sure to most people it looks like he just wants my undivided attention, but it doesn’t feel like that at all. It feels like genuine distress, but I can’t pinpoint if it’s sensory, or anxiety, or a loss of control, or all of the above, and especially I don’t know how to help.
The grocery store checkout person asks him how old he is. He screams “No,” or just yells with no words, then says to me with great distress, “I don’t want that person to ask me how old I am.” And often he’ll bring it up again hours or days later, about how much he didn’t like it or how sad it made him.
While picking him up at daycare, I ask our daycare provider about her day. Wordless yell and/or loud, distressed voice: “Mommy mommy why did you ask Ms. X about her day?” And then later, “I didn’t like it when you did that.”
Someone at the playground will say something to me about the weather. Same yell/distressed voice: “I didn’t like that when that person said it was a sunny day.”
This is often accompanied by physical meltdown stuff – kicking on the floor, grabbing or pushing me.
When he initiates an interaction with someone, he’s totally fine and happy about it and keeps it going with several exchanges.
I’ve tried preparation/social stories, and he seems to be on board, but then can’t implement it in the moment. I’ve tried asking him to respond together and helping him figure out what to say, thinking maybe he wants to be part of it but doesn’t know how. I’ve always try to empathize with his feelings, and sometimes also try letting him know we need to be respectful. I’ve suggested he say he doesn’t feel like talking right now. I’ve tried redirecting/distracting. I’ve tried reminding him to remember how much I love him if he starts to get upset. I’ve tried helping him say something “first,” before the other person starts talking. I’ve tried these not once, but many times. Some have helped once or twice, but never continue. And no matter how I answer when he asks why I said something, his response is that he didn’t like it or it made him sad.
Maybe this is just a phase he’ll grow out of, but it’s significant enough that it hurts people’s feelings a little, and definitely painful for him, and I just feel like there’s more I could be doing to help him feel OK when these things happen.
As always, thanks for helping me sort through all this.
You have all the right understandings and ideas about how to help him. What's missing, from your description, is the breaking down of these type of social situations into very small components, calling what you'd like him to do or say, expected behavior, and what he does or says, unexpected behavior. Break down the "expected behavior" in very small pieces, write it out in the form of a simple chart, using pictures and just a few words and review it EVERY day providing him incentives for doing any piece in the expected way over the course of the day. If there are 3 or 4 such situations a day that occur organically, then review each at the end of the day (I like bedtime) and break it down in pieces for him with your chart, giving him rewards for each part of every situation he did the way you are expecting. Use the SAME language each and every time you review it and don't punish him for not getting it right only reward what he does that you want him to continue. Stickers, stamps, marbles, action figures, lego men...use what ever excites him.
Be dispassionate about it and don't get upset at him. He doesn't mean to react this way. His social learning will happen explicitly and will need constant repetition. I understand that he's uncomfortable and I appreciate that you want to empathize and let him know you are there for him. But, it's the same kind of situation as teaching a child the value of sharing with others or encouraging children to respect their grandmother who may be slower and feeble. You want to do both....understand their viewpoint and hold them to a different standard.
My 11 year old doesn't need that kind of support any more, but, he used to. Take heart and take the long view. He will not get stuck here. You'll help him through it. But, there will be lots of situations that require this kind of explicit teaching so be ready for this. Find a good way to teach him. I called our system "good words and good deeds". You'll find what works for you.
Thank you, Livinglife. I would never dream of punishing him or getting upset at him for any of this. I've been doing the kind of coaching you describe verbally, both before and during the interactions, but I'm intrigued by your idea of using a chart with pictures. I'm not sure though what the pictures would look like. Can you suggest a few examples?
Often children on the spectrum are visual learners. Taking the "words" out of this as much as possible will only help him learn. If you think about it...words and the many different layers of meaning are often what get's our children lost in their interactions. I know my son is very concrete and explicit. I'd imagine your son feels only like he is telling the truth and doesn't understand the hurt in his words.
So use as few words as possible when breaking down the interactions you want to look different and make your words as literal as possible.
For children your son's age, take real pictures of him next to the explicit descriptions you use....make a game of it when you take the pictures and have him help you make your charts. Take one of him alone. Then, one of him being joined by another person. Put a hello in a cartoon bubble over the other person's head. Put words over your son's head in a cartoon bubble in the next picture of him and the other person, like, hello, how are you today. Show a picture next of you, mommy, with a huge smile, and a cartoon bubble over your head saying, "he was SO friendly"! This would be the expected reaction chart.
Make a chart of unexpected reactions with the same kind of pictures. Review these charts every day, as often as needed and offer rewards liberally for every step accomplished.
It sounds like you are very sensitive to him, and, very loving. This is a lot of work but it does help a lot over time.
Thanks, I’ll try that.
I can’t help thinking there are some other layers going on here as well, because when he initiates the conversation, or sometimes when other people do, his interactions are appropriate and complex. So it’s not like he completely doesn’t know how the communications are “supposed” to go. It feels more like under certain conditions he feels comfortable and confident and enjoys it, and under others he feels anxious and just wants it to stop. So I’d love to suss out what those conditions are, and help him feel more confident more often. Anyone have any insight?
Hi. Only you can figure this together with him as no one child on the spectrum is alike. That being said there are some commonalities. I think, in general, if it "pleases" him he will interact well and easily. If it doesn't please him he will say so in a very outspoken way and that's what you're seeing. It is very "spectrum like". Being explicit with what's "expected" whether we "want" to or not, and rewarding for that, gives him an external motivator to please others even if it doesn't please him to do so.
That's the neurological quirk of autism....that those on the spectrum have a difficult time seeing outside their own perspective to that of others. It's something you'll have to work with at all phases of his development. He may certainly want want to please you and others and be full of loving feelings...that's the difficult rub of it all....but not understand other's perspective (outside of his own) enough to do so on a consistent basis. As he get's older he may have to work, sometimes mightily, to understand the reason why someone thinks the way that they do.
If you can "change" the problematic behavior though that's a good place to start but is only part of the "fix" as you're alluding to....you can keep working on the "why" with him, of "why do people like pleasant conversation, and that "others don't know he's thinking about dinosaurs and doesn't want to be interrupted from his own thoughts but they still expect you to look up and chat for a minute"...or what ever is causing his reaction and upset. Changing the behavior is tangible, concrete and creates a great deal of good feedback from you and other's which is good for anyone's self esteem, and energy is freed up to discuss his thoughts, how his mind works and why he's sad.
You see, this will be life long, in understanding how he thinks and why, both for you and for him. But at the same time you want to hold him to a standard of behavior....
Hope that helps.