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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.

justaboutalittlefrazzled Sat 06-Apr-13 19:51:15
justaboutalittlefrazzled Sat 06-Apr-13 19:50:58

Actually now I've written it I don't know if it IS relevant. But here's my needy rant seeking sympathy and potentially advice....

http://www.mumsnet.com/Talk/special_needs_chat/1725836-And-once-more-into-the-breach-my-friends

bochead Fri 05-Apr-13 20:33:23

I suppose I'm just trying to warn others that you can work your butt off with the child to get them to a point where they can actually express their needs, only to realise that yet another mountain awaits you. The child is only part of the story.

It's a large part of why I'm personally so excited by the move to "outcomes" as expressed in the new plans for replacing statements. I'm hoping desperately it'll challenge this - 'Let's see how he gets on first and if we think he is getting anxious then we'll arrange for him to see the school nurse/counsellor'. Far to late at that point." mentality at source, so that perhaps us parents won't have to?

As a point of interest I'd love to see a national survey of how many 1:1 TA's have seen their child's statement, much less their SALT or OT targets etc.

Yes it is Boch, but that is his safety-net so probably of all the things you could get arsey about that might have to be one of the top ones.

Social Services calling you on trying to get a strategy in place for enabling ds to access school/reduce anxiety - really?

I suppose your best defense then would to make a written demand request from the outset. You will be able to clearly outline the reasons and point to the fact that it is a well-accepted strategy. You will also get a good understanding of the school and their ability/willingness to work with you from your reply. Make it clear it is a PREVENTATIVE as well as an EARLY INTERVENTION.

All of ds' previous schools would have said 'Let's see how he gets on first and if we think he is getting anxious then we'll arrange for him to see the school nurse/counsellor'. Far to late at that point.

MareeyaDolores Fri 05-Apr-13 13:54:45

See, proves my point <constant harping on about this>. Most schools actually need theory of mind training far more than our dc do.

bochead Fri 05-Apr-13 12:48:34

Star I'm in enough trouble already don't ya think wink. Parent in the role of "train the trainer" is fraught with obstacles, and utterly exhausting.

That's exactly what's likely to happen with the cards and it's likely to go down like a lead balloon, culminating in my parenting being maligned yet again until the day a chair goes throw the window, (his brother jumped thru a first floor window over exactly this sort of issue in a London comp). I hate it when I can foresee crap happening due to a total refusal to use the common sense God gifted us all.

Classic example of a melt down last Autumn term from schools perspective:

New lunch time TA assigned to DS, male so good role model for a child with no father yadda, yadaa. New TA introduces himself to DS in the playground. DS screams abuse at the man. DS runs away screaming to a teachers office and refuses to come out from under her desk until afternoon lesson start. It took over an hour to stop him crying. What happened?

DS's perspective of events:-

I was happily looking at bugs by myself. A strange HUGE man came up to me and asked if I wanted to play a game. I said "no thank you" very politely. I walked away. He came up again and said it louder. I told him "go away" in a very loud voice. He started following me demanding we play a game. I shouted "lots of rude words" then I ran very, very fast to Miss X's room cos I could see she was there. He was built like a brick S%&t house and obviously a "bad man". I didn't come out till it was time for lessons cos the "bad man" was still there and I knew my class teacher would keep me safe from him. "They shouldn't let bad men in the school, next time I'm running to the police station & I don't care if I get into trouble"

How hard would it have been for his regular TA to introduce him to the new lunchtime TA? It made for a really grotty first day in a new job for the new TA, so unfair to him too. DS STILL won't go anywhere near the poor man (who is actually very nice, even if he is built like the incredible Hulk) as he's never got over his initial fear.

'Star - DS will probably have a card to hold up at secondary as the various subject teachers won't know him as well as they do now in primary. You've just listed one of my biggest fears re transition as I witnessed similar on teaching practice during my PGCE.'

You know you could train him in a advance to put in place a feedback system and you could set it up. If he has a school diary, you can have an arrangement with him (you can tell the teachers in advance if you like) where exactly 10 minutes into the lesson, he holds up his card. If he is allowed to leave he puts a tick against that lesson in his diary. If he is not, he puts a cross (and knows that that is the signal to you when he gets home, to get into school and sort it out asap).

Pracising and training the teachers at the begining of his first few lessons, when he isn't distressed will give him the confidence that it will work, and the teachers the practice and access to the consequence to their behaviours. grin

You could role play it at home in the summer holidays.

Just an idea?

HotheadPaisan Fri 05-Apr-13 12:10:22

Yeah, good point, although I push it sometimes because it's important to respond well to positive feedback, although you'll probably get away with not getting too much in England.

Same theory for ruffling his hair, I know he doesn't like it but it's a desensitisation approach. He completely deadpanned one day 'I hate it when you do that' and then went on with his day, made me smile for some reason, he sounded so accepting and resigned, like he was humouring me.

Teaching a child to make their choice/preference/request/need known and then refusing to acknowledge it makes me blimmin angry and I have seen in a 'Opportunity class' when a child is using PECS and the adults remove the pictures of the things they cba to provide that day or think that the child is asking for too much.

No more than abuse imo.

Hot I suppose that I see 'not' saying 'yay, well done ds' and ignoring his compliant behaviour as the reinforcement iyswim. I think it is important to label it as such (not to myself as a parent - I think about this stuff a lot as I am interested in it but it isn't necessary to break things down quite so much as really it's just parenting , - but if trying to give guidance to someone else I think it can be helpful to have the theory or analysis to pin the required behaviour of the adult onto).

bochead Fri 05-Apr-13 11:59:10

working9while5 - ANY reading materials you have along those lines will be so gratefully received here. I find that sort of thing incredibly helpful when I'm dealing with the sort of professional that believes that DS doesn't have nice table manners cos I cab rather than recognising the magnificent achievement he's made in being able to cut up his own food despite co-ordination issues iyswim.

Star - DS will probably have a card to hold up at secondary as the various subject teachers won't know him as well as they do now in primary. You've just listed one of my biggest fears re transition as I witnessed similar on teaching practice during my PGCE.

Teaching DS to verbalise his need for time out though has I think been absolutely critical to managing his own anxiety if only because he no longer spends hours & hours fretting & internalising all the blame when things have gone wrong. (Selfishly it also means I might get a few hours sleep that night too!)

I also think it's been a critical life skill for adulthood, even if the grown ups don't always listen to him now iysim. For me I'm very conscious that many people who deal with him are only thinking in terms of what makes life easier TODAY, while as parents we are often the only people in the room really considering the long term view.

I agree wholeheartedly with the comment about the primary school playground. I'd rather lay the groundwork for those skills that will be critical to his survival in the adult world. We have to have some filter for prioritising what to teach next sometimes and I've chosen to focus on skills he'll need when he's in the adult world. (I'm often unsure & in a pickle about what to tackle next iyswim).

It's hard sometimes too as you have to balance being a therapist with being "Mum". Or too much time gets sucked up in dealing with the system. We too need to take time out just to enjoy our kids and families and I do think that outsiders can forget that. I have days when I now consciously say "fook it" and focus on just enjoying my child's company built into our schedule and have made these utterly non-negotiable and compulsory.

I don't want to be an additional source of pressure for my anxiety prone child, even unintentionally.

moondog Fri 05-Apr-13 11:39:15

This is the standard text I studied on my MSc in ABA course on ACT

I've a spare copy on my shelf I would be glad to give away if anyone wants it. smile

working9while5 Fri 05-Apr-13 10:56:47

Mareeya, yes: that's it exactly. That was intended as a chapter in the book called ACT Made Simple by the originator of the approach so accurate but also simplified to make it accessible to practitioners new to behavioural approaches.

HotheadPaisan Thu 04-Apr-13 15:03:51

All I could think during the lemon section in that article is 'why would you want to do that, would taste far too strong', ha!

HotheadPaisan Thu 04-Apr-13 14:56:31

Like that article, still reading and pondering why positive reinforcement doesn't work for some kids with ASD/PDA.

working9while5 Thu 04-Apr-13 14:37:26

Mareeya, my understanding of narrative therapy is there is still a belief in the story.. so you are trying to change the personal narrative with a belief that will effect change behaviourally in much the same way as changing cognition is expected to do in cbt. The issue is there is limited support for this either when using the cognitive elements of cbt alone or narrative.. yet the link does demonstrate how changing the story might be useful in reducing the sense of aversion that can come with having a negative life story...

ACT is about changing behaviour and relating differently to the whole idea of self/story etc.. defusing any and all stories, not the bad ones or the good ones per se e.g. realising all stories don't really represent the total reality and none of your thoughts/feelings/stories dictate or contol your behaviour, just influence it. You still have choice. You are not the problem/pain/fear but the problem/pain/fear isn't totally represented by your thinking or describing or evaluating of it and it probably isn't .g.ing to change through your efforts to think your way out of it.. It is what it is. You don't have to like that or resign yourself to it but the best way of working out what to do about it is to see it as it is and to bring clarity to your experience of it.

In ACT there are three selves: the self as content which is your narrative of your life, the 'I am the sort of person who' stuff, the self as context is you as you are in the present doing/feeling/being etc and the observing self is that bit of you that can stand back and see yourself without judgement, just noticing what is without trying to work it out, spin it, evaluate, decide, fantasize about what is or isn't etc.

In ACT you try to work as much as you can with the observing self... this is the mindfulness aspect of the approach and it is about noticing the automaticity of your thoughts and not taking them so seriously they ruin your present life.

MareeyaDolores Thu 04-Apr-13 14:17:32

article Working, this makes some sense to me, is it over-simplified or reasonably accurate?

HotheadPaisan Thu 04-Apr-13 13:58:07

You've just summed up my entire philosophy and approach to life working9while5.

HotheadPaisan Thu 04-Apr-13 13:53:53

I love “the person is not the problem, the problem is the problem”, I'll be using that wherever needed.

MareeyaDolores Thu 04-Apr-13 13:36:25

A bit like narrative therapy?

working9while5 Thu 04-Apr-13 13:08:54

Yeah absolutely - it is all about workability. If it is working and it isn't causing problems (as far as you can see, and that is all that any of us as parents can ever ask for as we don't have hindsight whether our kids are NT or not) and it's not conflicting with your values, then there's nothing to fix. We all avoid, after all.. I have a chronic avoidance problem with the laundry (like literally, dh does it all the time as I will skirt my way out of it no matter what) but it's not really impacting on our life and he doesn't mind, there are things I do that he won't etc.

It's just about playing the long game and trying to build the life you want for the future in the present. So sometimes the compassionate approach for all of you is what's needed and that might mean avoiding certain things, but at other times it's just not going to work that way or the cost in terms of the way the world will "punish" a different path isn't worth it = cost/benefit analysis all the time, which it is for all of us, no matter what.

As the ol' sunscreen song used to say: the race is long and in the end it's only with yourself.. whatever you do, don't congratulate yourself too much or berate yourself either: your choices are half chance and so are everyone else's.

HotheadPaisan Thu 04-Apr-13 11:51:14

And flexibility is absolutely key, flexibility will solve a lot of this in terms of curriculum. Also adequate support at home. All much cheaper than where all this could end up if we don't all adapt and compromise a bit. I always hold in mind his long-term mental health and balance that against insisting on some things and not completely tipping him over the edge. I think we are charting the right course and others have found similar ways forward with him too which helps.

HotheadPaisan Thu 04-Apr-13 11:45:10

It's so right, all of that, some things are rubbish and you can't change them but they don't exist or happen (generally) on purpose in order to make you feel crap.

You can avoid when necessary, modify at other times and accept it and get on with it for the rest.

HotheadPaisan Thu 04-Apr-13 11:39:02

Excellent posts, thank you, and sorry for what you went through.

I am relentlessly optimistic and always planning the next steps but have just emerged from a fug that I put down to it just being winter and everything being a bit relentless. The reality is it's always changing, some things gets easier, some harder but they always change.

I think I already think as ACT proposes so I'm sorted, what to do to help DS1 is the question.

We will continue along the path we are, school remains the place most likely to broaden his mind and interests so I am happy for that to be the focus and to ease up on the pressure on home. But I will get more cover at home and he will have to choose to stay and do things with them or come and do things with us.

This will be our approach and he will have to choose however hard he finds it. If this doesn't work we will have to look to medication.

working9while5 Thu 04-Apr-13 11:11:34

"does that add to or take from your life in this present moment?" - I guess actually it should be "does thatadd to take from the direction you want your life to go?" - avoiding might be more comfortable in the now, but if it leads to you not being able to fulfil your dreams in the longterm, that is a problem.

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