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How do you reconcile ASD, agency and ABA?

(129 Posts)
HotheadPaisan Mon 01-Apr-13 13:22:50

Having a real dilemma about medication and all sorts atm. A lot of DS1's thought patterns and behaviour make perfect, logical sense and if he was an adult you'd largely leave him to it, you'd pretty much have to actually, you cannot force people to be as you'd like. Also as he gets older I think some things will get easier irrespective of what we do or don't do but obviously it's all quite hard work now.

He needs help with anxiety/ fears but it's going to be hard to get him to engage with any strategies for these. All a bit chicken and egg and not the whole story anyway. Some things he avoids because he really doesn't enjoy them but of course I want to keep his options open and keep trying to expose him to new experiences.

I hate being told what to do and how to be but am generally sociable and get on in life, and I think he will be similar. We continue to plug away at helping him express himself more appropriately and to compromise and understand what others want and why it matters to accept that. Not sure where I'm going with this but just wonder how others reconcile trying to change them with letting them be, a bit.

TheLightPassenger Mon 01-Apr-13 14:28:30

I would see it as about working towards giving him genuine choice, ie taking anxiety out of the equation as much as possible, so that if he doesnt do something its out of disdain rather than panic?

moondog Mon 01-Apr-13 14:28:52

It is essentially about helping someone to be the best you think they can be isn't it? It's what sits well with you and your family that counts.
I've met lots of families who want people to accept their children as they are and who (in their words) just want them to be happy. I've met many others who view their being able to fit in with the world as essential and who place great importance on that.

My personal view is that the world is big, busy and scary and if your child can (to the best of their ability) cope with crowds, change, noise, waiting, and things like that, then everyone's life is better.

TheLightPassenger Mon 01-Apr-13 14:30:04

Eg not eating seafood due to personal preference rather than a morbid fear of you or a family member getting food poisning from it.

PolterGooseLaidAChocolateEgg Mon 01-Apr-13 14:34:08

I've been having similar thoughts recently. I often return to something ds himself said at 6yo, when we were going for our first OT appointment and I explained that they would be able to help him with some of his foibles and the things that made his life difficult, his response was: "But, I don't want to be changed, because then I won't be me"

For me, I want to enable ds enough to be able to survive school, he needs to not be violent obviously, and needs to be able to at least present a semblance of politeness, and he needs to tolerate some things that he would not choose for himself, eg he has to do maths, even though he hates it!

I suspect that my own personality makes a significant difference to my beliefs, I'm not social, am obsessive, stubborn, demand avoidant, have sensory issues of my own, so I'm perhaps more tolerant of behaviours that other parents would not tolerate...

But ds is an only child and it means we can accommodate his needs at home without impacting on another child, and I think that makes quite a difference, although I suspect if we had more children we would just do separate things with the children.

I do try desperately to teach ds negotiation skills, because I think this will be critical for him to be able to reach compromise, his intellect is an advantage here and I suspect as he gets older his skills of persuasion will be beneficial for him. I also allow an element of subversion, he needs to see that thinking creatively can be advantageous at times, rather than getting fixed on one course of action etc.

I've said it before, but for us, keeping ds's anxiety levels low makes a huge difference to his behaviour, this is our priority. Timing is always key with trying new experiences, going somewhere new, tolerating the intolerable. Also it is worth considering how important something is really in the grand scheme of things.

I do believe that if I can ameliorate the worst of school, and school is the main source of all his anxieties, he will be fine as an adult, whether that is staying at home and indulging his interests or going off to find his niche.

HotheadPaisan Mon 01-Apr-13 14:40:29

But all that striving is largely overrated isn't it. We could all do better, achieve more, most of us settle for an effort/ benefit trade off. Also the end result in the food thing is the same, it doesn't get tried.

The anxiety, it would be good to get rid of that, and you can if you stay at home or stick to activities you like or only interact with people you choose to. Took me years to realise I hate groups and crowds so I largely avoid them, still have a very good quality of life pottering about locally and on holiday largely in the UK now although have travelled a fair bit. A lot of experiences are overrated.

And I guess that thing about the world is the point exactly, wonder to what extend ASD is an issue outside of the West/mainstream schools, we are assaulted by people, noise and lights in cities here.

I have found that ds finds many new things adversive and I have to put in a lot of hard work to show him the joys. That sometimes includes force.

Once he has tried and participated a couple of times, I reassess. Almost always (but there are exceptions) the activity/experience becomes his absolutely favourite thing. If after a few times it is still a LOT of work getting him to do it then I will stop persuing it.

However, I expect some essential ingredients are a factor. 1) I have a pretty good idea that it is something that ds WILL like eventually. 2) I spend quite a bit of time thinking about how I will introduce it and what 'hooks' will make it easier for him, and 3) I take ds and all that I know about him into account.

The idea really, is that once ds knows what it is and understands what it is, he is then free to make the choice for himself, but I have little tolerance for refusing to engage in an activity without that knowledge or experience. I think ds could spiral into a closed and inflexible world of his own which is dangerous for his adulthood.

He doesn't have the experience or knowledge of the world that I do and of the world that I want to prepare him for, which is why he is unqualified to make his own decisions about what opportunities he will engage with in the first instance.


moondog Mon 01-Apr-13 14:51:00

'He doesn't have the experience or knowledge of the world that I do and of the world that I want to prepare him for, which is why he is unqualified to make his own decisions about what opportunities he will engage with in the first instance. '

Quite so Star. This is why I loathe the supposed child centric way of doing things. They can't make decisions yet. We're the grown ups. We're in charge.

Paisan, indeed. The concept of self improvement operates along a continuum. You might have 'being able to sit at a table' at one end and 'having a Hollywood smile' at the other. All have some value to the person or at least those around the person. What's important for one isn't for another. It's important to me that my house is tidy and that my kids keep their rooms tidy. Not for others.

PolterGooseLaidAChocolateEgg Mon 01-Apr-13 15:24:48

This is why I loathe the supposed child centric way of doing things. They can't make decisions yet. We're the grown ups. We're in charge

The difficulty with this is when you have a child who cannot be forced, cajoled or bribed, where you are not 'in charge'.

moondog Mon 01-Apr-13 15:27:53

I don't believe in forcing controlling or bribing.
If you resort to those then you aren't in charge, no.

Yes. I suppose when I say force what I mean is that I have been determined to find out a way to get ds to do something that he'd rather not do initially. There really is no easy solution to that and some children can be easier than others.

However, I have found that having had some ABA training in ds' very early years has helped enormously. In that I have had the consistency from those days and not let up. DS knows that if I ask something of him it is generally better all round if he does it. I hope part of this is his trust of me that I have been true to my word when I have said I will be (i.e. if I promise 10mins of tv for reading a short book and it goes well as a result, I won't suddenly insist on a second book before he gets his tv iyswim). The systems, consistency, trust and I hope, fun times are built into our relationship. It's what I aim for.

I realise that looks a bit smug. Real life is no where near as simple as that. Yesterday I said something 'wrong' in a restaurant and ds screamed and screamed and would not stop. I had no idea how to handle it, though I knew to zone 'other people' out and remain calm. It passed. I'll have to spend a bit of time working out how to avoid that from happening again without limiting ds' trips to restaurants.

When I feel I am losing ds (and it happens regularly), I go back to making miniscule demands and rewarding heavily and don't attempt to address trickier behaviour until I have those sorted and have built up from miniscule to bigger and bigger requests successfully.

Again, I'm probably talking about my intentions rather than the fact that everything works out perfectly. But having these kinds of plans and theories, and seeing the successes when they come (and I am VERY blessed in that ds copes with my mistakes and some inconsistencies well) really really helps.

PolterGooseLaidAChocolateEgg Mon 01-Apr-13 17:10:41

I do get that Star, but I think what both me and Hothead, and many others, experience with our particular children is a situation where despite having been consistent, setting boundaries, and doing all the stuff that should engender trust, our children do not respond in any sort of compliant trusting manner. It is really hard to reconcile having done attachment/responsive type parenting to then be faced with a child who does not trust you or does not in any way respect your choices or knowledge and who does not respond to either praise or reward.

I God, I do understand. I'm blessed with having figured out a way into ds, perhaps having started very young (I think this is crucial as it means he hasn't suffered much at the hands of the 'system' and been so very badly let down) and additionally that his personality is very forgiving.

My degree was in psychology and my specialism emotional intelligence and attachment. FFS. My first born had neither. I really DO understand. I just don't know what to advise except to never give up.

And I meant to add, that my ds is still younger than yours and HP's so who knows what our future holds. Perhaps the same.

So I really hope you do keep finding things and having ideas of ways to improve what can be achieved. Posters on here (in general) are so determined I sometimes think that anything is possible.

bochead Mon 01-Apr-13 19:15:38

Some behavior HAS to be altered for the child's own sake - whether they want to or not. I'm with moondog - the big potato needs to make the call for the little potatoes wink

It's why I secretly despise the EYFS - which is so child centred it's utterly useless for change aversive children, and even potentially damaging for some (stimming all day in the corner is learning NOTHING)

"Lord of the Flies" is what happens when things get too child-centred even for the NT.

DS often needs time to mull over a new idea and consider his options by himself without interference so generally I allow about a fortnight's warning before a brand new activity so that he can get himself used to the idea, in his own time and at his own pace iyswim. If he has a legitimate worry then he also has the opportunity to ask questions and mull over the answers, again at his own processing speed, not mine iyswim.

I'm really careful to listen hard to his concerns and to do my best to address them. If I allow him this, then generally he's fairly mellow and compliant.

moondog Mon 01-Apr-13 19:19:11

I don't think one of my colleagues working with kids with SN has any time for EYFS Boc. It's a joke.

HotheadPaisan Mon 01-Apr-13 19:25:17

I can't measure out my life in coffee spoons or do the total control thing. We do a lot of work though on negotiation and compromise and explaining social rules and setting and meeting expectations and I think it will pay off in the long term. DS1 asked me today what 'society' was and we had a good chat about punishment when watching the football and seeing yellow cards. This was after he insisted I turn if off due to the (low) noise and I wouldn't.

The meltdowns and appalling behaviour are over fairly predictable things now and we have to just keep on keeping on and suggesting and offering alternative courses of action.

Horses for courses and all that, when I remember he functions emotionally at a much younger age it's all a lot easier to deal with. He struggles with what he does too, just got to trust we are going to get there.

Obviously we watch for the impact on DS2 but in general I don't think it's much different to having any sibling. We are pretty zero tolerance on the physical stuff, sometimes I think we are a bit too strict on that but I can see how poor DS1's impulse control is for his age so we do not tolerate any playflighting at all. I do lots of alternatives with them both.

It's a long, old road but I am really not sure at all about them not being capable of making good decisions, DS1 often knows what the right thing to do it and is disappointed himself when he gets it wrong. He always apologises unprompted and wants to end the argument by making up, we have never forced this.

There are still a lot of problems of course but on the whole since school adopted a task/ reward approach and accepted a small steps approach and not to expect 100% compliance all the time, school has got a lot better. Big wobble recently but it was just a blip ahead of some really good progress.

So, I don't know, I can't deny him his agency, I was like him, everyone used to say how angry I was but they liked me anyway. Interestingly we rarely have to admonish DS2, and he's pretty determined, he finds it so much easier to comply though, he will comply instantly for a reward, DS1 will process it but often won't be able to and like I said, it can become cruel after a while to keep holding something out there for him to be unable to have.

He'll never fully comply and I'm ok with that. I still know he will make ok choices in the grand scheme of things. And I do think others should have to adjust around him too, we should all meet in the middle, why should he be the only one putting any work in? And it is all a huge amount of effort for him, I can see that.

HotheadPaisan Mon 01-Apr-13 19:29:37

Ah see, without child-centred learning DS1 wouldn't be in school, then life would be even worse for us all. He epitomises what is needed with that approach and I'm fine with it. They still push him, and he learns, albeit reluctantly and with considerable resistance in the past, but there is always something in it for him and as he gets older he will need a similarly tailored curriculum else he just won't be able to be there.

It might be too costly for some (TA in ms atm, but could be ss in future), but given the life chances and alternatives it has to be worth a try.

Ineedmorepatience Mon 01-Apr-13 19:44:31

I work with the Eyfs and while I dont despise it I do see how it cant work for all children. In the last couple of year we have had 3 dc's in the setting diagnosed with Asd , eyfs hasnt worked for them, one would have painted all morning, one would have played with the trains and one would have done puzzles all morning.

The Dc's key person (or me as senco) redirects the child, offers alternatives, uses choice boards cajoles, bribes anything really in order to give them as many experiences as possible.

Its not Eyfs but it is inclusion and for us that comes first.

I am the same at home, I try to give Dd3 as many opportunities as the other Dd's have/had even if that sometimes means pushing her boundaries.

I don't expect ds to do all the work. I expect him to do very little work. I expect to do pretty much the whole work. The work I do is how to make new opportunities acceptable to ds in order for him to experience enough to either be able to make an informed choice about them or to get the skills from them he will need to increase his choices later. It's bloody HARD work.

HotheadPaisan Mon 01-Apr-13 20:10:55

I meant society more. We push on when the time is right and back off when needed, others are getting that now too.

HotheadPaisan Mon 01-Apr-13 20:12:37

Early years has been all about compliance as far as I can tell, and I completely understand why, but it simply didn't work.

PolterGooseLaidAChocolateEgg Mon 01-Apr-13 20:15:48

It is all bloody hard work.

At the end of the day we do the best we can. A lot of this will be determined and shaped by our children's and our own character and needs, and also the resources, mental, physical and material, that we have access to. It is also dependent on our own values and what we believe to be important for our children's futures.

HotheadPaisan Mon 01-Apr-13 20:57:55

Absolutely, it just struck me that we don't often talk about to what extent DC with ASD should be allowed to be and have some say in their own lives.

Obviously not in terms of destructive and damaging behaviours which we need to find and eliminate the causes for, but in terms of having some say in the rest.

I remember doing the Headsprout and ABA tutors turning up with table top activities for DS1 to get him ready for school and he simply wasn't ready. He has protested about formal education until recently and I can't help thinking he had a point.

Of course he may not have started to settle now if we hadn't gone through the last few years of persisting but I'm not sure about that. Equally although he can't read yet but still the work put into phonics over the years will pay off I think.

Just musing about a middle way I think, a compromise where he understands the need to comply and does that and we allow him downtime and to follow his interests, which is the only way I honestly think he'll make it through the education system. Maybe DC like this are the barometers for how education and learning should be.

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