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Waiting causes tantrums, please help.

Eddie

New Member
Hello, my 63-year-old brother, diagnosed with Autism and ID has considerable emotional difficulties when asked to wait. For example, sitting in a doctor's office waiting for the doctor to open the door for his appointment. Another example is after spending Christmas with me and my family, it was time to leave to drive him back to his group home and a zoom call came through from a relative. Both times he moaned, complained, spoke increasingly louder and with an increasingly angry tone, asked why he had to wait and when we moved to the next room during the zoom call, he opened the door and fell to his knees into the floor, dramatically.

The moment he gets his way and is escorted out, he is happy and calm.

This behavior is very hard on those around him and many unsuccessful attempts have been made to handle it. Any insights or suggestions would be greatly appreciated. Is my brother just bullying in order to get his way?

Thanks so much for any help.
 
Is my brother just bullying in order to get his way?
That could well be part of it, but very few people are so simplistic.

For me, having plans disrupted is very disturbing. I've been known to throw a few tantrums myself. The classic example is when a boss comes out and wants me to do overtime when my mind is already in "pack up and go home" mode. If he told me half an hour earlier I would have been fine with it, but once I'd already formed an itinerary in my head change was extremely disturbing.
 
Not sure if your brother also has learning difficulties, is it LD you have put, or ID, if the latter, what's ID in this context?. If he has some learning difficulties or disabilities that's more likely to be the issue than his autism I would think. I guess you will have already have talked this all through with him to try to get his ideas on how come this is so hard for him? What does he say about that?
 
Has he ever had to wait for anything in his life time to date?

A meal to be ready?
An empty bathroom to pee or wash?
A bath to be drawn?
A school or college lesson to begin?
How did he feel about those things?

I don't know your brother so I can only guess :)

There may (or may not) be an element of his frustration producing a desired outcome. This behaviour may be learned over his life time.

More importantly,
processing information in an alternative way might not allow for zoom calls,
by which I mean the statement he understood was how he was to be driven back to his home.
He's processed this, broken it down, remembers each part - doorway, familiar car, seatbelt, engine starts, even perhaps the journey back home?
Maybe he didn't understand the zoom call?
It isn't part of his familiar routine?

Your mention of him becoming louder and angrier suggested to me the zoom call was the anomaly. People acted differently to how he remembers people acting when he's driven back to his home?

Both you and I understand the concept of waiting. It's polite.
We also experience the emotional connection to those on the screen (zoom call)

Doesn't necessarily follow that your brother does.
There could have been a whole host of reasons your brother didn't understand what was going on.
I wasn't there and I don't know your brother so the above is conjecture.
 
The moment he gets his way and is escorted out, he is happy and calm.
It’s sort of getting his way, but it is also solving the problem which was waiting. Waiting introduces the unexpected and it is a common time, in me, for anxiety to fester.

As others have pointed out, some people can integrate the idea that sometimes one simply must do it and so we all manage in different ways. I also throw tantrums, but they are quiet and inwardly focused. When I am made to wait and I have no way out, I will scratch myself or use my fidgets in a harmful way. This is maladaptive. In some ways, throwing a tantrum and showing the external anxiety is more effective.

I would also add that for me, zoom calls are especially chaotic. I don’t feel a connection through a screen and I find all the different sounds really loud and distracting, and the social expectations are super confusing, not to mention the inevitable technical issues. So, this particular example sounds like it would trigger most of my stressors.

I realize this message does nothing in terms of offering solutions. The only thing that comes to mind is possibly finding the time to make an impromptu plan to replace the plan that was disrupted. Either verbally or perhaps even in writing if possible, it might be helpful to quickly concoct a new schedule so that there is less uncertainty and something to focus on other than the unknown.
 
It’s sort of getting his way, but it is also solving the problem which was waiting. Waiting introduces the unexpected and it is a common time, in me, for anxiety to fester.

As others have pointed out, some people can integrate the idea that sometimes one simply must do it and so we all manage in different ways. I also throw tantrums, but they are quiet and inwardly focused. When I am made to wait and I have no way out, I will scratch myself or use my fidgets in a harmful way. This is maladaptive. In some ways, throwing a tantrum and showing the external anxiety is more effective.

I would also add that for me, zoom calls are especially chaotic. I don’t feel a connection through a screen and I find all the different sounds really loud and distracting, and the social expectations are super confusing, not to mention the inevitable technical issues. So, this particular example sounds like it would trigger most of my stressors.

I realize this message does nothing in terms of offering solutions. The only thing that comes to mind is possibly finding the time to make an impromptu plan to replace the plan that was disrupted. Either verbally or perhaps even in writing if possible, it might be helpful to quickly concoct a new schedule so that there is less uncertainty and something to focus on other than the unknown.
Thank you Rodafina. Your insight into the problem alone is most helpful in figuring out a plan and I really like the written agreement part. I will have that ready in advance.
 
That could well be part of it, but very few people are so simplistic.

For me, having plans disrupted is very disturbing. I've been known to throw a few tantrums myself. The classic example is when a boss comes out and wants me to do overtime when my mind is already in "pack up and go home" mode. If he told me half an hour earlier I would have been fine with it, but once I'd already formed an itinerary in my head change was extremely disturbing.
Thank you very much for your prompt response and your insight. It's helpful to understand that if the schedule looks as though it will be changed, early notice of this fact might be helpful. Sometimes, something unpredictable happens. Is there anything I could have said or done besides just giving into his demand to leave that might help? For yourself, would anything help you?
 
It’s sort of getting his way, but it is also solving the problem which was waiting. Waiting introduces the unexpected and it is a common time, in me, for anxiety to fester.

As others have pointed out, some people can integrate the idea that sometimes one simply must do it and so we all manage in different ways. I also throw tantrums, but they are quiet and inwardly focused. When I am made to wait and I have no way out, I will scratch myself or use my fidgets in a harmful way. This is maladaptive. In some ways, throwing a tantrum and showing the external anxiety is more effective.

I would also add that for me, zoom calls are especially chaotic. I don’t feel a connection through a screen and I find all the different sounds really loud and distracting, and the social expectations are super confusing, not to mention the inevitable technical issues. So, this particular example sounds like it would trigger most of my stressors.

I realize this message does nothing in terms of offering solutions. The only thing that comes to mind is possibly finding the time to make an impromptu plan to replace the plan that was disrupted. Either verbally or perhaps even in writing if possible, it might be helpful to quickly concoct a new schedule so that there is less uncertainty and something to focus on other than the unknown.
 
Actually, your explaination is helpful. Many thanks. My brother wasn't asked to be part of the zoom call after he just said hello after our prompting. We were only asking him to wait a little while for me to finish and drive him home. Would it be helpful if my brother was provided with one of those squeeze stress things or taught to count or sing or put on headphones when suddenly frustrated? He refuses to do these things, but perhaps his behavioral specialist could train him while he is calm. Does this sound worthwhile?
Not sure if your brother also has learning difficulties, is it LD you have put, or ID, if the latter, what's ID in this context?. If he has some learning difficulties or disabilities that's more likely to be the issue than his autism I would think. I guess you will have already have talked this all through with him to try to get his ideas on how come this is so hard for him? What does he say about that?
My brother, Eddie has intellectual disabilities, but they aren't consistent or always definable. While my husband said that our children were ahead of him in almost every way by age 6, Eddie was a wiz at Yatzee and memorized difficult road trip directions the very first time. If I would ask him the questions you mentioned, he would just answer yes, for instance to everything, which clearly wouldn't make sense. He asks why he must wait for the doctor over and over again even though an explanation has been given each time. I'm never certain how much he can understand. He can never answer why questions.
 
Has he ever had to wait for anything in his life time to date?

A meal to be ready?
An empty bathroom to pee or wash?
A bath to be drawn?
A school or college lesson to begin?
How did he feel about those things?

I don't know your brother so I can only guess :)

There may (or may not) be an element of his frustration producing a desired outcome. This behaviour may be learned over his life time.

More importantly,
processing information in an alternative way might not allow for zoom calls,
by which I mean the statement he understood was how he was to be driven back to his home.
He's processed this, broken it down, remembers each part - doorway, familiar car, seatbelt, engine starts, even perhaps the journey back home?
Maybe he didn't understand the zoom call?
It isn't part of his familiar routine?

Your mention of him becoming louder and angrier suggested to me the zoom call was the anomaly. People acted differently to how he remembers people acting when he's driven back to his home?

Both you and I understand the concept of waiting. It's polite.
We also experience the emotional connection to those on the screen (zoom call)

Doesn't necessarily follow that your brother does.
There could have been a whole host of reasons your brother didn't understand what was going on.
I wasn't there and I don't know your brother so the above is conjecture.
Thank you, Gracey. My brother wasn't asked to participate in the zoom call, which along with phone calls, he wouldn't like at all. We just had him exchange hellos and asked him to wait a little while to leave. At the doctors office, he's just being asked to wait for the doctor to come into his room for the appointment, but the doctor is late and Eddie must wait. I am understanding how waiting and changing schedules suddenly and unexpectedly are disturbing for him, but these things happen in life and I'm looking for a way to help him handle inevitable frustration.
 
Thank you, Gracey. My brother wasn't asked to participate in the zoom call, which along with phone calls, he wouldn't like at all. We just had him exchange hellos and asked him to wait a little while to leave. At the doctors office, he's just being asked to wait for the doctor to come into his room for the appointment, but the doctor is late and Eddie must wait. I am understanding how waiting and changing schedules suddenly and unexpectedly are disturbing for him, but these things happen in life and I'm looking for a way to help him handle inevitable frustration.
Oh, he has had to wait many times and it's extremely rare for him to handle it well.
 
Is there anything I could have said or done besides just giving into his demand to leave that might help? For yourself, would anything help you?
In the situation with the zoom call I don't think you could have done anything different. I don't have the learning difficulties your brother does and in that situation much of my frustration would have been masked, but everyone around me would still feel it.

I tend to overthink everything. I don't just decide that I'm going to the shop, every single aspect of that trip is pre planned. Which route I'll take, where I'll park my bike, which aisles in the shop I'll walk down, what products I will buy, several different possible scenarios of my interactions with the girl behind the front counter, and my route home.

Any deviations in that set plan will disturb me. I'm not good with surprises.
 
If your brother is struggling with an ID and ASD, he is probably further along the spectrum than many members of this forum. As such his ability to bully or manipulate others is going to be slim to none.

How he is acting out is likely a result of major anxiety and deviation from routine. In short, he has no control over his environment and freaks out because he needs routine to feel secure. If he shows enough distress those around him will speed his removal from the stressful sitaution.

He doesn't drive, he lives in a group home, and has little autonomy. This indicates a much younger mental maturity than his 63 years. Where the difficulty rests is that other see a grown adult acting childish, they don't know or take into account his mental and emotional capacity. It isn't a sign of manipulation or malice, but a way to escape an anxiety inducing situation. It is essentially a way he tries to control chaos and gain a smattering of control.

Something that can help, be very clear with communication.

e.g.

Who is going to take him home and at what time. Be consistent with things like that. It will establish better trust and greater peace of mind for him.

(Seriously, I can understand why he got upset about a delay when he had been in a busy environment all day. What you term a 'tantrum' might well have been a meltdown triggered by too much stimuli.)

If there is a delay, keep something on hand to distract him. Fidget cube, an app, doing a lap down a hallway what have you...Stims and physical outlets really do help.

More importantly, talk to his doctors and find out where he is in a mental and emotional capacity. He has an ID keep that in mind and adjust reactions accordingly. Age wise he is an adult, but mentally and emotionally will be a different story. Be patient, and be conscious of his limits. If you notice stressed behaviours, check in with him. Take him home if need be.
 
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Would it be helpful if my brother was provided with one of those squeeze stress things or taught to count or sing or put on headphones when suddenly frustrated? He refuses to do these things, but perhaps his behavioral specialist could train him while he is calm. Does this sound worthwhile?
This sounds like a great idea… Especially getting used to things during a time that is calm and safe. I would say that offering a variety of things would allow Eddie to choose one or two that work for him. For example, there are some textures and functions of fidgets that drive me nuts, while others are more calming. Also, as I shared, I need to choose safe fidgets so that when I am losing control, I do not engage in harmful stims.

On the headphones, especially noise canceling ones, it seems they can have very different effects for people here. For my part, I recently purchased some noise canceling headphones and they are amazing and I get great relief from them when I am alone in my home environment. Wearing them around people or in busy places, increases anxiety, however.

Oh, he has had to wait many times and it's extremely rare for him to handle it well.
Although they are rare, perhaps you and Eddie can highlight when it does go well and determine why. I think it would be safer to assume that Eddie is understanding more than you think, and openly conversing with him about this and the plan and how to handle it, as it sounds like you do, is a good approach in my opinion.
 

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