Here some suggested organisations that offer expert advice on SN.

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.

I tend to see it like this:

A 6yr old child spinning around in circles for 20mins is engaging in repetative behaviours, as is a child opening and shutting doors, wheras the same child child kicking a ball against a wall for 20mins is sports mad, and the same child playing scales on the piano for 20 minutes is a musical genius.

No one activity is better, but some are more socially acceptable and may perhaps lead to a more fulfilling life or even employment. So it isn't necessarily that the children need to be stopped from doing the things they feel they NEED to do, but perhaps it is our job to shape their behaviour and interests to make their lives easier in the future.

HotheadPaisan Mon 01-Apr-13 21:12:55

Yes, I get that completely. But compliance/ fitting in/ a sense of belonging to the group, there's the tricky thing, when avoidance is based on anxiety, which sort of has a legitimate and almost rational base, when your brain is wired the way it is. Obviously we break things down, desensitise and so on but there has to be room for acceptance and providing alternatives too.

bochead Mon 01-Apr-13 21:18:49

Re the downtime - that's proved to be crucial for DS. He NEEDS an hour or two after school every day to decompress from the stresses of the day, without it he'd implode.

It's one of the key reasons I'm mulling over online schooling for the secondary stage as I often wonder how much more academic stuff he'd be able to absorb if he wasn't struggling so much with the environmental/social side of things. It's as if he has to follow 2 or 3 curriculii everyday, while his NT peers just deal with the one. No wonder he needs time to just "be".

Right now it feels as if he does his social learning at school and the "real" academic stuff at home where it's quiet enough for him to concentrate. I'm kind of wondering what would happen if we flipped that on it's head, and he socialised a couple of hours a day and studied properly (3 R's etc) for 6.

This wasn't an option to even consider until recently as he had to gain a critical mass of language and social skills for it to become possible to plan (e g there are now mainstream clubs and groups that are now accessible to him, that weren't even 6 months ago). At this moment in time, his current mainstream is absolutely the right place for him.

One things for sure - I am totally unconvinced that the sensory overload of a typical inner city mainstream comprehensive will enable him to make progress either academically or socially. I also already know that as an adult he'll regulate his own choice of environment to that where he can function optimally. (e g No way will he ever choose to work on a busy building site, or do his grocery shopping on a busy Saturday afternoon!). For all that I want him to fit in with his peers, I am very conscious that sometimes banging a square peg into a round hole sometimes just breaks the peg!

Special schools of the type he needs are very few and far between and those that do exist tend to be in the private sector &/or residential. I also have ethical issues with asking any LA to spend £50K per year on a solution that could cost less than £10K .(the rough cost of online school plus some excellent peer based social & leisure activities plus OT).

HotheadPaisan Mon 01-Apr-13 21:27:24

YY to all that. Except I am not so concerned about the ethical issues of the money when compared to life chances overall. I'd only not push for ss at secondary if I still felt then that the local option wasn't quite right for him.

He's entitled to an education and it's up to the LA to press on with direct payments and more flexible options.

HotheadPaisan Mon 01-Apr-13 21:32:51

This is interesting, Temple Grandin radio interview, just listening now, good so far: www.blogtalkradio.com/thecoffeeklatch/2011/02/14/shannon-rosa--ipad-apps-for-autism

HotheadPaisan Mon 01-Apr-13 21:57:11

That radio interview is just the first 25mins, flew by, very easy to listen to. Then there was a feature on iPad apps but I don't have one so stopped listening. The radio thing led me to this which is also interesting: promo.challengethemyths.com/

bochead Tue 02-Apr-13 01:41:51

I get the entitled to an education bit (Lord knows I've fought hard enough on that front!); I'm just getting increasingly annoyed at seeing hard cash thrown around like confetti on completely ineffectual "eclectic" solutions all around me. In the meantime DS's real support & educational needs get overlooked time & time again unless I go at it like a terrier with a bone.

I'm not denying the need for specialist input, where appropriate, but it's all too often been the low-cost common sense interventions, like the photocopy we have of DS's timetable on the fridge that have made the deepest impact in terms of positive outcomes. Cost of that? 10p. Outcome - far fewer morning meltdowns and a child who goes to school looking forward to the day ahead instead of totally stressed. Took 3 attempts to find a school that would make this happen for DS though confused.

Letting parents be involved in the recruitment process for the lynchpin of the whole mainstream SN system would be a great start. At present it doesn't matter how many outside consultants, experts, etc are involved, if the TA/child fit isn't right the whole expensive package can still totally fail a child. I suspect similar lunacy occurs in the SS system though I have no experience of that sector.

I'm happy to lead the charge in demonstrating that public funds used more intelligently than the current system of meetings about meetings can and will demonstrate vastly improved outcomes for our children. I'm worried that "the local offer" will translate into "we want to protect our jobs and pensions and continue having meetings about meetings", rather than open up opportunities for real innovative approaches to helping children with various SN's.

It would be nice to offer children themselves a CHOICE about what type of educational approach would best suit their learning needs. I do believe that by 11 most children have a fairly clear idea of what sort of environment/approach helps them to learn most effectively. They may just have trouble communicating that to us adults in a way that makes us sit up and listen. Parents are usually best placed to both hear and then to advocate on behalf of the child.

moondog Tue 02-Apr-13 13:49:43

Excellent point about the timetable.
So true. Time and time again, it is the cheapest stuff that has been the most effective in our school.

But regardless. Why would you NOT start with the cheap/free stuff and work up?

I think it is because people want the easiest solution and often throwing money at something/someone seems easiest.

I was guilty of it in the early days of dx (not just laziness but true desperation of just not knowing WHAT to do and having no-one willing to tell me), I bought things as if somehow having purchased STUFF was going to fix my child and remove my problems.

Or at least throwing money at something is the easiest ACTION.

You can report 'We have a problem x, so we bought some y' as if that somehow fixes the problem all by itself.

moondog Tue 02-Apr-13 14:12:39

Yes indeed.
When a rational sitting down and working out calmly what will best suit all parties is best. If that works, then scale up.
I take issue with so many fancy s/lt assessments for starters. Anyone can learn to carry out a standardised assessmsnet but what is the point when there is no action taken by specific and accountable individuals? Those reports get written and then hidden away in a filing cabinet.
You can bet your bottom dollar your kid's 1:1 doesn't get showin it or have it explained.

Then all of this vague advice

Daisy needs to work on play
Sean needs to extend his use of preopositions

Who is it all directed to and where is the plan of action??

justaboutalittlefrazzled Tue 02-Apr-13 19:55:25

I have thought a lot about this issue. I know you've often written Star about how your child is on the passive end of the ASD scale behaviour-wise. Your issue as you have described it online is always about how to reduce stimming/persuade him to try new things. I get that there are behavioural difficulties as part of that, but the child you describe at say school is generally well-behaved and passive, not participating/listening is your problem.
Whereas Hothead describes a child with extreme behavioural difficulties to the point that suggests impulsivity issues as well as anxiety.
I think ABA is much less useful to a child with high impulsivity issues - the impulsivity will get in the way regardless. We've used an ABA therapist occasionally with our sons and it was great for persuading the toddler to try new things like, er, speaking. But it's not much cop as a way to reduce impulsive behaviours, IME.

HotheadPaisan Tue 02-Apr-13 20:06:15

That's exactly it about the impulsivity, and he just doesn't remember/ learn for the next time, you just have to be there to quickly intervene and provide an alternative yourself. I hope it calms down over time as we keep drilling alternatives. He tells me how hard it is for him to stop.

And the avoidance when he just cannot/ will not be motivated. We could get ever more extreme and remove everything but I think he would just increasingly do without. This is a child whose favourite/only toy is a 10p stretchy man.

As long as school is going ok new experiences and opportunities will present themselves and he will decide to try them. I just don't think I can expect that at home too. He needs the downtime however hard that is for us. Again as his ability to read and do his own research improves that should get better too.

It's tricky, I'd love to really go for it with ABA, and it is what school are doing in effect, but it doesn't seem right to exert that level of control over him. If it is fear, and it seems likely it is, we just have to play the long game.

I don't know if ds IS passive tbh. His school say he has the most behavioural problems in his class to the extent that the class TA is almost HIS TA and his Grandpa came down this Easter holiday and commented that he needed his own personal guard.

The fact is that he is passive with ME and to some extent DH because we have practised and practised the skills to manage his behaviour consistently for almost 4 years since he was a toddler when it was easier and we have built up.

Having said that, his art teacher says she doesn't understand what the other teachers are going on about so who knows!? confused

MareeyaDolores Tue 02-Apr-13 20:19:27

Its very hard to find strategies that work for properly reducing impulsivity.

Methylphenidate is actually very good for this. Puts a tiny space between action and reaction... For DS1 this extra half a second was just about long enough for him to have a chance to use the memories / skills / thinking / choices etc which I'd been trying to drum into him. I've been told that regular 'mindfulness' practice has a measurable benefit, but am going to trial it on me wink before subjecting the dc to yet more stuff.

Lots of things do worsen impulsivity though (fatigue, overload, stress, anxiety, hunger, sensory stuff, frustration, you name it) but usually only we care sad

MareeyaDolores Tue 02-Apr-13 20:25:05

If the default state is major anxiety, then the most meaningful reinforcements are those which reduce or distract from the gut-wrenching stressfulness of life.

And being a control freak / fighting with mum / counting the cracks on the ceiling will therefore be far more rewarding than engaging, whatever the bribe. Personally, I suspect this might be the underlying mechanism for most dc with major demand avoidance issues, and would explain why the 'no pressure' strategies seem to work best for most 'PDA' dc.

justaboutalittlefrazzled Tue 02-Apr-13 20:43:44

The fact is that he is passive with ME and to some extent DH because we have practised and practised the skills to manage his behaviour consistently for almost 4 years since he was a toddler when it was easier and we have built up.

You see I don't think this is the case. I appreciate that you started young and you manage him well, but I think it is also just chance, the luck of the draw with him etc. It would be nice if parenting exceptionally well - which I know you do - did mean you could manage behaviour effectively but it doesn't always. Some children are brilliant at school and difficult at home, some children are brilliant at home and difficult at school. It doesn't mean that one setting is managing the behaviour better than another. It CAN do, but it doesn't necessarily mean it.

I am not denying that he (and I for that matter) have some inter-dependent personality traits that have made things easier (though please understand that I have also worked bloody hard - like many parents), but I'm pretty certain that if the school just did a couple of things the way my experience leads me to understand would work with him then he would be a hellova lot less impulsive at school than they are currently reporting he is.

I believe that the ABA therapy (and he has had years now) has reduced his impulsivity to some extent, and that it not being continued consistently is affecting his ability to access his education and to learn the skills to manage his own impulsivity outside the home.

HotheadPaisan Tue 02-Apr-13 20:56:19

MareeyaDolores - that is also exactly it. Pressure just doesn't work, he'd 'choose'/default to going without, always.

Also, I think that impulsivity and general frustration and the need to act urgently to cope/relieve the tension they cause can come from having a very badly arranged environment and being expected to suffer it for duration.

I have no doubt that if we had not started very early that ds would by now be a very agressive and distressed child and I am under no illusion that he is not at risk of that still.

justaboutalittlefrazzled Tue 02-Apr-13 21:04:34

Also, I think that impulsivity and general frustration and the need to act urgently to cope/relieve the tension they cause can come from having a very badly arranged environment and being expected to suffer it for duration.

Yes, but it can ALSO be because that's the way the child is hardwired. And the hardwired kind will not respond well to ABA. Medication is a better option, or an easier structure. I think there is a danger in the fact that your child respomds well to being pushed forced encouraged cajoled that you imply other parents didnt start early enough/are not trying hard enough.

working9while5 Tue 02-Apr-13 21:06:41

Hothead, I don't have a child with autism but I did provide ABA for a number of years and I really struggled with the rhetoric of compliance/strategies that were anti-difference, because I too could see reason in many behaviours deemed unacceptable, and communication too.

Recently I have been looking afresh at ABA as a science, and because of my own anxiety issues, looking at behaviour in new ways. Acceptance and Commitment Therapy (ACT) which is based on a behavioural account of language, has resolved many of my outstanding issues with ABA as a science of normalcy. There is no need for that. ACT is about living life that has meaning and value to you, and in the context of parenting, of making parenting choices from a place of awareness of both your values as a parent in the service of enabling your child to have the life you most wish for them and your vulnerabilities that arise out of the tensions between your dreams for them and their individuality: those stresses every parent has when none of it makes sense and it all seems too hard, without the heavy burden of special needs to make it alkthe more difficult.

There is a book on Amazon called The Joy of Parenting which is aimed at parents of nt kids up to 8 which I found immensely useful this year. There is a specific book also on parenting your anxious child with acceptance although I have not read this. It makes a lot of sense to me.

But an easier structure certainly is within the remit of ABA.

The whole point of it is that you gently modify behaviour within the ability and acceptability of the child, in order to encourage them to get the skills in and exposure to things that will make their quality of lives better. You never do ABA for the sake of it, or to fulfil your own desires or control. It is always about the child. You have to measure and monitor progress but also ethical aspects.

Medication is different. It can help the child slow down just long enough to reach them. Once reached though you have to have a plan.

HotheadPaisan Tue 02-Apr-13 21:18:38

Yes, my thoughts also come from the fact we are similar although I don't remember the fear/anxiety/reluctance to participate. As soon as I thought I could stop complying, I did, at about 14, still turned out ok though, luckily.

I'm hoping a slower roll with him having some/ more control gets him engaged and keeps him engaged, it's certainly going better since we all stopped expecting so much of him.

'I'm hoping a slower roll with him having some/ more control gets him engaged and keeps him engaged, it's certainly going better since we all stopped expecting so much of him.'

So using the science of ABA, you would try and assess what level of control is the optimal one for getting the best engagement iyswim.

God, no-one said it was easy, though I maintain it is easier if you start young, which many parents are denied information to enable them to do so.

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