Teaching flexibility

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My son doesn't compromise on anything even a tiny bit. It's either how it's supposed to be (in his mind) or it's not, in which case it's completely unacceptable and warrants hours of crying usually. He's 12, and I fear that it's actually getting worse rather than better (might be just his size that makes it worse, but it's definitely not improving). He has classic autism, and his language skills are not the greatest. He uses PECS fairly well. Not sure about receptive skills.

E.g. A change in route. However we went somewhere for the first time, is the only way we can ever go. That's a problem when it comes to construction/detours, or parades, or anything like that. You have to drive in the same lane even, or walk on the same side of the road.

I know it sounds like I should just not give in. But the thing is, I usually don't give in, because it's usually not even my choice. I can't help that there's a parade on the street- I obviously don't drive through the crowd- so he doesn't get his way. He gets his way if there's no reason for a change, because I don't even try, but if there's a reason then, he doesn't get his way. Yet, this continues.

What happens is, it ruins the activity because he is screaming and lying on the floor and throwing things and whatever else. It usually lasts 2-3 hours, even if all we did was walk on the other sidewalk. It's a ridiculous over-reaction. That's why I don't do this when there's no reason to (maybe I should start though?).

He can be a Drama Queen, but usually if he's "acting" (which he does do sometimes), it lasts a few seconds, and then he's done. Like if you tell him to take his hands out of his pants (yeah he does that..), he usually yells and throws himself on the ground, dramatically, but then he gets up a few seconds later. This isn't like that- it's a full-out meltdown (or tantrum?).

The school has complained about this a lot. They went horseback riding, but he didn't do much, because the school did a different route (on the horse) than he did previously when he went horseback riding. The last time he went was several years before this, but he still remembered the old route and that's the only way he would tolerate. Just stuff like that. He actually really loved horseback riding too, so he missed out on something he enjoyed due to this, so if it's a tantrum, it's a weird tantrum*. The school seemed to blame me, because I think they think I just give in to his every whim and he's just being a brat. I can see how it comes across that way, and I know I do give him his way if there's no reason to do otherwise, just because I can't handle the meltdown. It's too much. And it doesn't seem to matter how many times he doesn't get his way, he still wants his way just as much...

Any advice?

*I edited this to add that sentence.

Is it because he wants his way or is it because he is having anxiety when there is a change?

those of us with severe or profound classic autism have extremely rigid thinking and a acute difficulty with understanding concepts,its also extreme anxiety triggering to see change of any kind.
we are both exactly the same right down to the severe challenging behavior when those changes happen,it sounds like its his rigid thinking being set in place and theres no other way to think in his world,its all he will be able to understand if he is anything like self.

the only things that helps self is when support staff are always one step ahead of changes,checking out places to make sure they are open, keeping a monitor on roads,and only then planning the PECS timeline to make sure they dont need swapping about,the other thing that helps is PRN medication.
am prescribed a lot of PRN haliperidol and will take this if there does happen to be any changes/autistic extreme anxiety as its quick acting.
have also got a weighted lap blanket that use in the car and have a fibre optic type tube toy always in there to for distraction.

if he is kicking off in the car alot it might be worth getting a crelling harness,the challenging behavior version.
they had wanted to get self one of these but they pull over, lock the door and get out instead and wait till its blown over.

He wants his way, but I don't know why that's his way. I don't know why he is so set on doing things the same way, but that's a common feature of autism, is it not? I guess it's anxiety or just that he doesn't see how there can be more than one "right way"...

Edit: Thanks Kingdom of Rats. He has a harness in the car always because he doesn't sit in the seat even when he's content. He is on some medication for seizures and it seems like any little change, makes those not work, and they need to work, because he has so many seizures if they're not working...so I'm always weary of trying new meds. But he has an appointment with the neuro next week, so I'll see how that goes.

Last edited by WelcomeToHolland on 13 Aug 2014, 6:23 pm, edited 1 time in total.

I found that the best way to handle this with my son was to talk in advance about how everything isn't going to be the same, and to prepare him for all the options. I don't know if your son understands you well enough for that, but that is where I would start: in the pre-outing preparation process.

The need for things to be the same is a coping mechanism, a way of handling something that is stressful to them. It is a key sign that what you are doing is either stressful, or integrally connected to a myriad of assumptions and expectations. Either way, paving the way for him to understand beforehand that he can NOT expect what he thinks he can expect should be helpful.

Also, see if you come up with a version of the map trick. Many ASD kids cope better in a place like an amusement park when they are given control of the map and helping everyone get where they need to go, because it gives them a sense of control as well as something to focus on in an otherwise overwhelming and confusing situation. I wonder if GPS on a phone could serve the same function? As long as a child can see the blue dot advancing on the blue line he'll derive a sense of comfort? Hmmm ... except I can also see all the ways that could backfire, given GPS is not THAT accurate. But maybe a paper map he can draw on or a stop watch? I don't know; get creative.

Anyway. We basically narrowed our lives for many years until my son got past that need, and even though it doesn't sound like your son is going to get past it, simply living as narrowly as possible will make your life easier.

When my son was that rigid, we like you, just stuck with the changes that life threw at us b/c that was hard enough. We didn't add to it, because he was already upset and crying so much, that I did not think I should add to it. That sounds like where you are, right now. It is rough. I think rigidity is our biggest obstacle, still. Normally the advice is to attempt small changes to acclimate the child as well as explaining the need for flexibility and how random things can happen that are no one's fault. We were not able to work on this until we saw a glimmer of understanding and a tiny bit of movement just from being used to certain things being subject to change. It is a hard concept to understand, and my son is just starting to understand the benefit now at least when it comes to pleasant surprises. Sometimes he will reject even those, depending on general stress level.

I wish I had something more concrete to tell you to do, but I think it may be a readiness issue. You can plant the seeds hoping he will understand in the future, and it will be helpful, later on. Reducing stress can help once there is readiness.

ah, med interactions-can understand as am quite severely epileptic as well and on a high doseage of tegretol.
has he ever tried diazepam/temazepam/lorazepam?
used to be on this as both a emergency seizure med and daily medication & PRN for the extreme anxiety/severe challenging behavior ontop of twice daily haliperidol but benzos build up tolerance quite quickly when used often,so was swapped to haliperidol as a PRN to.
woud recommend looking into diazepam as a PRN medication as its quick acting,can be got in a pink liquid form and also helps control seizures if any extra did happen to be sparked and is allowed ontop of anti epileptic meds.

Sometimes even small change can feel like the bottom has fallen from the Earth, and gravity no longer applied. The little routines we use to feel grounded have changed, and it feels like all sanity has been tossed out with the bath water.

In my case, I can usually weather through it, and realize it's not so bad. As a person on the milder end of the spectrum, it must feel so much worse for others. Even mildly afflicted, I have resorted to a couple prescriptions to stay on kilter.

Last edited by MjrMajorMajor on 14 Aug 2014, 6:10 am, edited 1 time in total.

Can you try social stories? Done well, it's a very effective way to help someone make sense of what's confusing and that's very helpful for avoiding so much upset when things aren't as he expects.

Another issue I uncovered with my son that made him significantly more rigid: alexithemia. He was unable to distinguish the slight discomfort everyone feels when plans change from a high-alert panic that one feels when one is in danger. If you don't know what your feelings are telling you, the anxiety compounds and becomes paralyzing (and I do think rigidity is very much connected to anxiety.)

One of the things I tried, along with a social story, was to tell my son "Things are different from what you are used to. You might feel weird - that's normal. It is OK to feel strange or uncomfortable or bothered when things change. That doesn't mean something is going wrong, it just means that you are adjusting to something changing."

We did always pre-prep my son as much as was possible when we knew things changed - another tool is to make sure you aren't TOO rigid in following things "his" way - I sometimes would park in the non-prescribed spot (but somewhere equally convenient) or offer him the non-prescribed plate. Things he could tolerate with protestations but not a full meltdown. It's not dissimilar to treating OCD.

Just realized that this comes up a lot, so I added a post to the Parenting Index - the last post has several threads on the subject.

[quote="DW_a_mom"]I found that the best way to handle this with my son was to talk in advance about how everything isn't going to be the same, and to prepare him for all the options. I don't know if your son understands you well enough for that, but that is where I would start: in the pre-outing preparation process.[quote]

Priming worked for us and also in ABA they would change is routine but make the change a preferred event and then right back to what he was supposed to do. Eventually they moved to less preferred. It has helped with the car issue. When he was 2 to 3yr he would lose it if you went a different route than he was used to, tears and wailing for a good 5-10 minutes. He still tell us when we go a way he doesn't like, but now it is just a point and an insistent, "There, There" with a small huff of disgust that we were too dense to listen to him. For him a lot was age and getting language, but I know the priming and tolerance to change program did help.

It took me a long time to realize this, but sometimes when it seems like school is blaming me, they are being defensive because they are afraid of being blamed.

Sometimes they can be put at ease with a pleasant attitude about how you know how hard they are working, appreciation for their effort, and a comment about something extra you're doing at home yourself or working with another professional to help the situation.

I certainly hope the school isn't actually blaming you. When they do, though, it often means they are stymied. Or someone screwed up. I'm most successful being reassuring and positive, confrontation isn't something I know how to do successfully. Though it's certainly an option.

Thanks for your responses.

He did do ABA for years (stopped when he was 10) and they did do small changes thing. It was worded "SURPRISE!", they'd clap and make it into a celebration...and he would try to get out of the room, crying, hands over his ears. This was actually an issue I "fought" with them over. It sounds like a nice idea but he didn't get over it for hours... I think it likely is partly my fault, because like I said, I can't handle the aftermath. I feel badly, so I haven't done much of it. Even now, YEARS later, he cries when you say "surprise".

He responds really well to social stories, but for some reason, I only make them for major events. We're currently doing "going back to school"- I do elaborate ones because he doesn't generalise well, so he doesn't respond to generic stories with stick figures or something- I go and take photos of the actual stuff and I laminate and bind it because he's not very gentle with paper (he'd eat it , lol). I've never thought to make one for the road change. Maybe that could be generic because roads don't vary very much? It's worth a shot.

I liked the school last year because they tried really hard with him, but they weren't specialised in ASD and I think they didn't really know what to do. He was placed wrong (long story). This coming school year, he'll be in an ASD class, so hopefully they're better equipped to handle this.