challenging behaviour: when to engage when to dis-engage

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Our daughter displays a range of fairly challenging behaviour. I am after some sage advice as how to best handle it as everything we have tried, and we have tried a lot, might succeed for a while but ultimately fails. Perhaps this is not the most useful categorisation but I see the behaviour falling into 5 main categories.

Behaviour 1. She might have a meltdown / panic attack in response to a trigger or some processing issue where she becomes frustrated by an outside event or something happens that increases her anxiety. This appears entirely involuntary and is the most distressing and intense.

Behaviour 2. She also often appears to have lots of restless energy which she doesn't know what to do with and appears to semi-consciously choose to antagonise or provoke a response. This might initially be just low-level disruptive behaviour, very close personal contact or not listening when asked to stop something but might quickly escalate to touching and moving objects she is not meant to touch (her sister's things or her dad's things) or low level violence or aggression.

Behaviour 3. When she is in demand- avoidance mode she can become very hyper and might again look to antagonise as a deliberate attempt to avoid doing the thing she is meant to be doing. This is very similar to 2 but is behaviour with the underlying purpose of avoiding a perceived demand or delaying a future event.

Behaviour 4. In response to a disappointment, annoyance or small injury she might use threatening language or thrash out towards whoever is closest.

Behaviour 5. Finally, there are times when she is engaged in concentrated ritualised behaviour (OCD like rituals) and she feels she is interrupted and will become verbally rude or aggressive. Usually this settles down fairly fast but is still undesirable. This is similar to 5 but is specifically a response to perceived interruptions. Recently, as this has become an issue she will say "I'm busy, please don't interrupt me" or something similar before starting her checks so it is becoming less of an issue.

Behaviour 1 is not antagonising it is like panic and it is not directed at anyone and she will usually look to isolate herself and then once she has calmed down allow me to come and comfort her. If I try to comfort her during the panic she will sometimes let me but it is never intentionally violent or directed at me (although she might kick or try to head-butt if I have to restrain her for her own safety). After behaviour 1 she will be physically exhausted and need a fair bit of help to re-compose herself.

In behaviour 2 it is usually directed outwards - specifically at us, her family.

In behaviour 3,4,5 we appear the accidental recipients of the behaviour, it is not specifically directed at us. I have seen her do her OCD checks with a random man walking past and his mobile rang and it might equally have been him that was the recipient of her frustration. However, she is never verbally aggressive or violent to anyone but her most immediate family.

In cases when there is any degree of aggression she is asked to leave, go and calm down and return when she can apologise and not engage in that behaviour anymore. She might then leave, take a few minutes, return to apologise and we move on. She might refuse to leave, then she will start running round, chasing away from us and try to escalate the behaviour, we will again ask her to leave to go to calm down but if she refuses and continues to escalate we will escort her to her bedroom, I will point out that the open door threshold is a boundary and I expect her to keep to that boundary. At this juncture she will either stay or she will run out again, I can put her back reinforce the boundary but it usually just continues. It is this behaviour that I feel I need the most help with. What should I do at this juncture. My options are very limited. I have a younger child too so I need to keep her safe. We have one space in our house which I could lock, a conservatory with a glass door to the living room, so she can still see me. Sometimes when she is hell bent on antagonising I will put her there if my husband is home he might lock himself in there with her and say she can leave once she calms down but otherwise I will just stay the other side and tell her to knock as soon as she is willing to go to her 'safe space' and stay there. That might just take a minute and she will then go to her room and start calming down. The alternative is to put me and her younger sister in a particular room and close the door and enforce that boundary by refusing to let her come in.

I would very much like to break this cycle. It is exhausting and doesn't do much for her self-confidence and is also a major barrier to us having a nice time as a family.

However, I am unsure how I can let this behaviour just run its course without engaging or doing something as she will literally hound us and not let us be. Eventually, usually when I can achieve the point in the cycle where she can remove herself and calm herself down, she will do so and either come and apologise or just get stuck into an activity she finds calming - drawing, writing a story in her bedroom or playing calmly. She might even write us a letter of apology. Either way, she apologises and life goes on.

In behaviour 2 if I can intervene early and explain to her that her brain needs stimulation and get her to do something constructive - play with kinetic sand, or do something physical together or draw or have a snack or shift the energy then this can be settled down. Behaviour 3 would be the same but I can't often do that as the demand she is avoiding is something that needs to get done. The only way to succeed with behaviour 3 appears to withdraw ourselves from her and dis-engage and then she reaches a point where she realises she is ready to go through with the demand she will come and find us if it is something we need to help her with or just get on and do it and then come back calm and ready with the demand executed.

Apart from this rather challenging behaviour she is an absolutely delightful person and we can have an absolutely lovely time together! She is a fantastic big sister and can play for hours with her little sister with few issues if she is in the right head-space.

Any words of advice will be much appreciated.

I am moving my answers to your questions on the other thread here, but then I am going to post later on with reference to the previous message just because I know my answer is going to be even longer and more meandering, and I want to give my brain a chance to edit.

With reference to your questions on the other thread: I only have one child, so I do not have the added difficulty level of dealing with my son and the needs of a sibling. My advice on that, will not be first hand or probably very helpful. I know this is probably possible for only very short periods, but when you have some other responsible, willing person around you - a spouse or other close relative, say, I would try to separate the children and if it is not the other parent, let the other person take the younger child who is easier to manage. When you can't do this, it is going to be a lot tougher. If possible I would try to arrange my outing accordingly. When my son was an infant, he had a terrible sensory reaction to the smell of supermarkets. We didn't know it was autism at the time, just that the supermarket bothered him as soon as we walked in and we guessed it was the distinctive smell of supermarkets.

Once we figured it out, we stopped trying family grocery shopping for a long time. I sent a list with my husband, and stayed home with my son. When we started trying again, we only tried with him to the posher supermarket (it had less of that smell) and for shorter trips. When necessary, I would take him out, and let my husband meet us in the car. So, this is my long way of saying try to think of ways to work around the problems she has, instead of butting up against them, whenever you can, until you get her calm most of time. Then you can reintroduce one thing and work on it slowly.

When my son was a little infant he was melting down a lot (it seemed almost constantly, but probably wasn't) and anything we knew was an issue, got scaffolded. Then we worked on figuring out what stressors were left, and took those away, too. This sounds like coddling, but we really needed to do this. Life's accidents and the things you can't predict or prevent gave him enough challenges at that point. We had no room for anything else, as it was hard enough for him to deal with those things. Once I figured out standard parenting was going to need to go out the window, meltdowns were dealt with with calming (not punitive) time outs for him, and if necessary for me. Then, once the meltdowns were more manageable, that was when we added things.

We had it mostly under control until the school years. Then we had a lot of issues there b/c of too many issues to list (sensory issues, not being given a dedicated qualified aide, bullies, too many changes without warning, insistence on inappropriate discipline etc. ) We had to pull him and home school him after second grade for his own well-being because it was like literal torture for him to be there and it was turning him into someone he is not.

He needed the summer after second grade to calm down, and then we started homeschooling, and while things are not perfect, they work pretty well. The meltdowns are very infrequent and minimal. Issues are usually limited to him telling me he is mad at me, and needs a break, which is fine and not even actually a meltdown. He has an academic program that is full of challenging, honors math and science, customized language arts which has a lot of emphasis on breaking down , understanding and applying communication, social studies punched up with humor and additional visual content, and scaffolding for executive functioning issues.

We were damn lucky we could do this, b/c if I could not home school him, I don't know what we would have done. Even if we sued the school district (and won) to pay for private school, any autism type school in our area would have been far away and non-academic, and not suited for him either. In the US, everything depends on where you live, and we would probably have had to move to Northern California or some other place where they are more willing and able to accommodate. Where we currently live, they are very much into strict discipline and punishment as the go to and for my son it makes everything worse.

oops duplicate post

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This is actually a good sign because she knows to try to isolate herself and calm down. That means she has the self-awareness to notice the signs of upset in herself and evacuate herself from others. This is not a small skill. She may need some help identifying more or earlier signs and acting faster before she gets too upset and can't keep from kicking and head-butting. The faster she can recognize the signs and act on them, the better she will get at avoiding the meltdown tipping point of no return. The other thing that might help is if you can do your own analysis of what her triggers are. What is happening to make her this upset? Is there a pattern? How much of it can you predict in advance and avoid?[/quote]

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First of all - Thank you so very much for your sharing your experiences and giving me some guidance. It is really the greatest gift and I am so grateful.

BEHAVIOUR 1:
This is the least frequent of the behaviours. And the full fledged panic attacks are not a weekly or even a monthly thing. They are infrequent and epic. It will often be due to external stimulus. It might be at the public library, a public bathroom (she is terrified and hates self-flushing toilets with a vengeance). If they do happen at home it would be due to a (generally unavoidable) disappointment or sense of injustice. The head-butting and kicking will only occur if I try to restrain her (for her own safety) in which case the thrashing about it an attempt to free herself. Usually I will just try to sit calmly near her and wait and then go to her when she is calm enough to move on. Usually a small pick me up snack. Some reassurance and indication that it is fine to move on is enough once she calms down.

I would say if there are any specific triggers they are a sense of being rushed or a sense of having to hold many things in her mind (or hands) at one particular time. Generally just a sense of being overwhelmed. Also tiredness or hunger play a part. We are an international family and go on international trips 4-5 times a year. She is a veteran traveller but these epic meltdowns can often happen as a response to exhaustion during a journey.

Whilst I am all pro trying to look for triggers it is often the shear force of the unpredictable nature of these panic attacks that is their defining feature. So I will keep a record and try and find triggers but I am not sure there are any specific ones more than just total overload. It might be more important to have things constantly on me to help with the pick-up process.

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Hmmm. I am thinking about this and this is actually very interesting to me b/c this is the perfect place for an automatic stim that she could do subconsciously without thinking about it, but her brain isn't triggering one. Is there something ,more portable like a small cloth bag with sand in it, that she could carry that would work that she could turn into a habit? It like she needs something tactile based on what you have said.[/quote]

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This is a great idea. She has a calm bag but doesn't use it so it will require some rethinking. The problem I have is that she is so particular about objects that they take on layers of anxiety for her. She will spend ages counting the objects in her calm bag to check they are all still there for example rather than use the objects. Either the bag needs to be mine and passed to her when she needs it or maybe a list of things she can go and do might work to just trigger moving on from the current behaviour. Sometimes this phase is all about scooping her up and doing something silly and just changing the trajectory. It is just in a busy life when someone starts annoying behaviour that is distracting you from what you are doing, it is hard to see the bigger picture that they might need physical contact and some sort of stimulation right then and there even thought it is inconvenient. I think behaviour two is when she is under stimulated or when underwhelmed. So it is kind of the opposite of behaviour one. It will be good for me to see it like that. I also think she is far more intelligent than we have seen yet and her brain needs more stimulation. I will think about how I can best provide that without getting into trouble with the demand avoidant behaviour.

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Do you think giving her additional time/notice before the demand would reduce her anxiety? Do you think there is something about the tasks themselves that have some kind of pattern that you can predict? Would breaking down what she has to do into smaller chunks maybe given to her one piece at a time, help? Is this something that happens when she has had ;ots of other stress in her day, and can you reduce that?[/quote]

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Oh demand avoidance is the bane of my existence. It is crippling. It doesn't matter how much time she has it is all about getting her or letting her get herself into the right head-space to just do it. It is about knowing how and when to push and when to go easy and it is the most exhausting aspect of my life. The worst part of it is mornings before school. I can sometimes break things down and get her to complete one stage of the morning by putting a new end-goal in place. For example, get dressed and she can watch something whilst she eats her breakfast on the sofa. However, it is so complicated I can't even really say "get dressed" it has to all come from her or be an indirect demand or with comic effect or some other layer. At one point I just bought her an alarm clock and put all the breakfast type food on the table and said nothing at all. That worked well for about a week. PDA just shifts and changes and there is no predictability to it.

So the biggest demand avoidance patterns we have is around dressing (in particular for school) and getting ready for bed. Dressing can be challenging other times too even if there is a super fun end-goal but with school there is an obvious timeframe and she also has to contend with her separation anxiety.

Again, as the task is to get her to get into the right head space what I really need are clues as how to do that. Often she will invent self-soothing games. Dressing with her sister under the covers with me coming in to check on them and finding them dressed sometimes works. This morning we had to play an extremely complicated game of dressing where she was a baby owl and I had to fly her around the house. It gets to the point though where I am unsure if my involvement is really beneficial. Perhaps I should just sit downstairs with my coffee and wait it out rather than play a complicated game that wins us half an hour, an hour. I just don't know. I feel at this junction it is all about looking at the end-game, it is preferable if she can get off to school without us feeling upset or stressed with each other even if she is a little late. It is preferable to keep and maintain trust and keep any threats (from me) because of lack of compliance (from her) at a minimum.

However, I saw your post elsewhere about breaking things down into stages so I have started to do that with other things that are not as hard going for her. I will just make her a list with the stages often with some small reward at the end and she will get it done in no time. This is genius and I can see how I can utilise this further - I could make treasure maps with instructions, we play words with friends together online so could send her messages there with things to get done etc. Think this will help me lots. Just can't see how I can apply it to something that is laden with so much anxiety - like getting ready for school.

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This is actually awesome that she can articulate she is busy and request she not be interrupted! It is very upsetting to them to be interrupted when they are in the middle of a script/monologue/brain dump She is actually handling this very well, when she does this! I would focus more on the aggressiveness than the rudeness at first because she might be able to redirect the aggression at least to the rudeness. I would be honest and say both are not expected responses to being interrupted but the aggressiveness is a safety issue and priority #1. Then you can tackle the rudeness. (Remember she is likely to think the person interrupting her is rude, and in a sense she would be right)

Eventually the objective would be to get her to say something benign like what she is already saying.

We would have this problem most often when salespeople would approach in the middle of my son's "sales pitch" for a given appliance. (He likes to go to shops, look at each appliance and explain the features for each one to me. He is still not great at not being rude, but it has decreased over time. Usually the salesman cracks some kind of joke, which my son does not think is funny about my son doing this, and he does not like the interruption. I apologize to the sales person and tell him my son is not actually in the market for said appliance, to lighten the mood. Then later I repeat my thing about how we are guests in the store and not buying anything and that the person is just doing his job. I think he understands, but it takes a lot of effort and repetition to get him to chill out with his response. Now he is either silent or just somewhat grumbly, which is better than it was.[/quote]

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Behaviour 4+5, you are right, I need to find ways to reduce the violence and aggression and let other things go for now. It is hard cause I constantly feel stuck between regulating behaviour and not wanting to tear down her confidence and give her a lousy self-image. I will try to talk to her about how we can better do this. We tried getting her boxing gloves and a punch bag but once again she will fidget with the gloves and obsess over them rather than use them. Humour might work and diffuse things. I will think.

It is funny what you write about your son doing the sales pitch, both cause it sounds like a really good time for you and your son and I would love to see him do a sales pitch!! But also that is my daughter to a T. She would also be like, how dare that sales person come and interrupt my pitch. Once we were in the passport line and she decided to ask me something just when the immigration person went "next" you can imagine who she thought should wait for the other person to finish their line of questioning first!

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From the day I first attempted time outs we had trouble containing him in a space. Part of it was he used to be somewhat claustrophobic. Part of it was that it seemed punitive b/c that was how we first started doing them as punishment. As it turns out there is a calming variation of time outs, and I started explicitly saying the time out was for calming and not punishment. Turns out that if thinks he is being punished he reacts badly --that is our main PDA-ish issue.

I think he feels justified in what he does or really can't help it (depending) and therefore resents the punishment part. So we don't do punishment. We do (sincere) calming timeouts and natural consequences. He does not resent natural consequences and they work as better disincentives and means he does not get rewarded for things that should not be incentivized. I stopped making it to where he was confined to his room and just defined it was not being in my immediate vicinity and doing calming things like playing music. If he followed me, i told him I was getting riled up and I needed a time out and I would excuse myself. With another child, you'd have to take her with you, of course.

The compliance with this system increased when when we made those changes and cut the oxygen to the feedback loop as I described in the other thread.[/quote]

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This is where I have to put in a lot of work. I need to just consistently do this. It is just it always seems to happen right when I am cooking dinner and would require me to stop everything I am doing and take my younger child off into a separate space. I think I have to just persevere and do this every chance it is is possible though. I am not so good at natural consequences - can you give me some examples of how you do that in practise?

Finally, if you are not absolutely sick of me by now I will pm you some questions about school as I feel that is my greatest hurdle and we have a big change on the horizon I would love to get some perspectives on.