Here some suggested organisations that offer expert advice on SN.

Article discussing the myriad of approaches to treating autism - worth a read

(52 Posts)
boxinggrubs Wed 06-Feb-13 11:35:23

Found via a tweet from Ben Goldacre. Interesting stuff, and food for thought. It made me think about Tinsley House support thread and how parents of children with autism really have a minefield to deal with in terms of what to do, as well as worry for their children -
autism treatments

MummytoMog Wed 06-Feb-13 11:52:24

I love Ben Goldacre. I can't get that article to open though, any chance of a copy and paste or is that naughty?

sickofsocalledexperts Wed 06-Feb-13 11:52:24

Just read this through on one go. What a sensible article

porridgeLover Wed 06-Feb-13 12:09:22

So what should parents be doing? What actually works? Jensen said a physician who makes the diagnosis of autism spectrum disorder will likely write a prescription for physical therapy and speech therapy. “And if there is one thing that we know very clearly, it’s that children with autism respond to intensive behavioral intervention.”

Applied Behavior Analysis is considered the gold standard of treatment, Jensen said.

I think this is quite true and sensible.
Not taking away from the allied role of SaLT or OT, but this is the kernel I think.

Sensible article.

boxinggrubs Wed 06-Feb-13 20:03:26

bump for evening crew smile

Just going to have a look now.

Toni27 Thu 07-Feb-13 14:25:30

Very interesting read. Also the comments below the article are very interesting too. Who knows what to believe.

inappropriatelyemployed Thu 07-Feb-13 14:29:10

I have not had so much luck with the ABA professionals I have approached thus far I have to say. I think it really depends on the child and that there is a dearth of experienced professionals able to deal with articulate, high functioning children.

moondog Thu 07-Feb-13 17:28:17

I love Ben Goldacre too.
There are two issues.

People seek easy cures to a variety of different problems.
There are no easy cures. ABA is hard work and requires discipline and structure.

People would like you to believe that addressing developmental disabilities requires a cast of thousands and pots of money.
This is a myth which creates an ever greater SN industry,

very good article, thank you

inappropriatelyemployed Thu 07-Feb-13 18:11:40

'ABA is hard work and requires discipline and structure.'

Quite right. I don't know any parent who thinks there are 'easy cures'. However, there is no point applying hard work and discipline for the sake of it. There has to be a purpose and I have seen two ABA therapists flounder to come up with workable solutions to complex social skill problems as both seem to fall back on the 'sit there', 'eat that' 'learn words' model which they are used to applying when these are not my child's problems. I don't doubt there are therapists out there who can cope with issues like this but both I've met so far said they could and clearly can't.

This is not to undermine the therapy itself and I am sure you are an expert practitioner Moondog, but not all are and it is very difficult to differentiate when you are trying to instruct someone.

Also, the reality is, for most people, therapies, including ABA do cost pots of money. Nothing comes for free and even if you do at home yourself, the child still has to function at school.

I think this is the SN industry you are talking about, getting in the way.

WarmAndFuzzy Fri 08-Feb-13 22:38:27

I've had similar experiences inappropriatelyemployed with my two high functioning kids and ABA. We tried an after school programme with mixed results - some of the game playing stuff was useful, but a lot of the things we and their tutors were doing with them they already knew so it was a waste of time and money.

In retrospect I should have been a bit more up front about what I thought but I was in awe of all these people with Psychology/ABA degrees and higher degrees and assumed there was an ultimate purpose to it (I now suspect it was just box ticking).

In the end the programmes collapsed because we just couldn't afford the hundreds of pounds it was costing us every month.

I'd also like to find research on how effective ABA is with higher functioning kids, but as yet haven't seen any.

inappropriatelyemployed Fri 08-Feb-13 23:02:06

That would be interesting. I also found that they found a highly anxious, highly verbal child difficult to plan for. I think he needs CBT more than ABA

moondog Sat 09-Feb-13 13:10:01

It's true most behavioural approaches focus on ASD.
It;s rather frustrating as they have so much to offer kids with other issues. There is a lack of ABA trained professionals to deal with these children however.

It's actually the population that I have most clinical interest and professional experience of so I am very keen to develop this and we have a lot of interventions going on for these sorts of children. The CBT comment is interesting. Mindfulness is a behavioural approach that is attracting growing attention and some of my colleagues are using it with great success with children who are very anxious and get overloaded with language and adult instruction.

Classrooms are busy stressful places, none more so than those in special schools where people are in and out the whole time. We have taken intersting and rather worrying data on this which demonstrates quite graphically that all the people traipsing in and out are exacerbating the problem and not alleviating it.

We have some interventions going on where we reduce the background noise and virtually eliminate all adult instruction/conversation. It makes a remarkable difference and once staff see the data showing resultant dramatic reduction in anxious behaviours, they are more than happy to comply.

HotheadPaisan Sat 09-Feb-13 13:41:24

A different approach is needed to education and schooling in general I think. The whole model is stressful and doesn't work for many. The things that go on in the playground without adequate supervision are terrible. It's such a false environment too, very few people work in an environment as stressful as school is for a lot of children.

As for ABA, I often think a lot of it would be better branded 'positive behaviour support' because that's the aim really - creating an environment and facilitating behaviour that allows a child to relax and learn.

Paisan I am in the middle of crafting a parental response to a proposed statement, and I really like your turn of phrase "creating an environment and facilitating behaviour": I will use it if I may?!

HotheadPaisan Sat 09-Feb-13 16:47:37

Feel free, I just made it up smile It's at the heart of it I think.

Kleinzeit Sat 09-Feb-13 17:06:30

Jensen said a physician who makes the diagnosis of autism spectrum disorder will likely write a prescription for physical therapy and speech therapy. “And if there is one thing that we know very clearly, it’s that children with autism respond to intensive behavioral intervention.”

Applied Behavior Analysis is considered the gold standard of treatment, Jensen said.

It’s this kind of over-simplification that makes me afraid of losing the “Asperger’s” label. ABA would not have been the least bit appropriate for my DS, another of those bright articulate anxious Aspies. Social skills therapy plus a side order of OT and anger management have hit the spot exactly for him.

moondog Sat 09-Feb-13 17:11:23

You are I think confusing EIBI (Early Intensive Behavioural Intervention) with ABA Kleinzit.
ABA is the science of behaviour, behaviour referring to anything that is physically manifested.
As such, its application is relevant everywhere and anywhere.
Business, education, politics.
Currently huge in the field of Health & Safety (particularly in NZ) and in the Green movement.

inappropriatelyemployed Sat 09-Feb-13 17:14:13

I agree Kleinzeit but I do think someone as expert as Moondog is capable of crafting a more child specific intervention. I know she has helped me with many targets etc.

I really agree with creating a positive environment but this means different things to different children and my experience with therapists so far has been to look at things that they child does differently (usually to help deal with anxiety) and try and correct that, working on the basis that the child just wants it their own way. I and DS's school found that very uncomfortable.

inappropriatelyemployed Sat 09-Feb-13 17:15:00

Moondog, I really wished you live nearby!

Kleinzeit, ABA is appropriate for my NT DD who has challenging behaviour due to being 4 and very bright, and my NT ds (7 months) who has been taught sign for food, milk and even a nap and is the happiest baby on the planet as he doesn't have to cry for these things.

It is appropriate for a business seeking to increase the moral of their staff, and efficiency of output. It is appropriate for drug rehabilitiation, prison harmony, behaviour in youth club foyers. It is appropriate in the home to keep on top of housework, finances, relationships.

Knowing what I now do I'm pretty certain it is appropriate for children with Aspergers.

Kleinzeit Sat 09-Feb-13 17:32:10

Well the article wasn't making that distinction very clearly either moondog. You're right, it could be read your way, but Jensen didn't say that ABA is the science of behaviour which can be incorporated into other therapies, and she did say that intensive behavioural intervention is what (all?) children with autism respond to. I am worried that different therapies which would have been seen as more appropriate for different sub-groups of people with ASCs will now be seen as competitor therapies across a much larger group of people who will all be lumped together, with IBI (or whatever) as the "gold standard" for everyone with an ASC.

'I'd also like to find research on how effective ABA is with higher functioning kids, but as yet haven't seen any'

Actually, most of the lovaas stuff focused on HFA children. The research actually does suggest that HFA children benefit the most. The arguments around this usually centre on the fact that HFA children benefit the most from pretty much ANY intervention and 'some' will figure it all out anyway and become independent all by themselves, which means that an LA 'might' have got away with not funding it for that child. So some people call into question the necessity of ABA for HFA children iyswim, but not because it doesn't work or because it doesn't make a difference.

Having said that, ABA provision in the UK is crap imo. Nothing to do with ABA, but the application of it by quasi-professionals who get away with offering substandard provision because of the refusal of the government to make it mainstream and competitive and to ask the right questions of providers. Parents have to go 'underground' and there are traps there.

inappropriatelyemployed Sat 09-Feb-13 17:39:12

I think Star it is appropriate in the hands of someone specialised in delivery in the particular environment or very skilled in the principles.

I know what Klein is saying. There is something peculiarly distinct about Aspie anxiety and angst and the ABA approach seemed to want to reduce this to deliberate non-compliance (in the sense of naughtiness) which leads you nowhere as you want be working with the child on the right issues.

I totally accept that this is probably the therapists rather than the therapy but finding the right therapists is very hard as they say they can do 'x,y,z' but are clearly only competent in 'a,b and c'

inappropriatelyemployed Sat 09-Feb-13 17:39:58

X post

moondog Sat 09-Feb-13 19:08:17

It would be foolish to assume that all behaviour analysts are competent with all issues or indeed are good (although the BCBA qualification goes a long way to sifting out the charlatans.
That is the same in any profession. i know s/lts who are fantastic and others who i wouldn't trust with a hamster. Ditto teachers and myriad others.

ASD captures a lot of attention because it is a growing issue and it costs so much in so many ways-financially and emotionally. So naturally people look at ABA in that context too. Also makes for a more punchy story. The journalist picks the bits that make most impact. One of my academic collegaues was approached to be the ABA expert for the story that ran in the DM recently. He couldn't get back to the family in time but I know if he had, he would have emphasised its relevance to other populations (but no guarantee the journalist would have used this.)

I am clear about where I can and can't help. I turn down a lot of approaches to work privately with very small children with severe ASD (from MNers as well as people I know in RL) because this is not the area in which I feel most competent.

Give me a slightly older child with other issues and I am rolling my sleeves up straight away. This is my territory.

inappropriatelyemployed Sat 09-Feb-13 19:39:33

I agree Moondog. I got the second one by recommendation and he had worked for a leading autism school but I don't think he even had very effective communication skills with children.

I think some in the area think they are gods and teachers are stupid. Parents don't like to challenge because it is their last hope. They and their tutors can wade into a school and remove the last shred of a relationship that exists. Word gets around that ABA is BAD.

It's a frigging mess.

I hope the compentency thing does a LOT about building relationships.

though to be fair some teachers ARE stupid

moondog Sat 09-Feb-13 19:46:30

To me the real challenge is getting these interventions into regular schools, not just in the flashy specialist ones (which cost £££) or in home based programmes. ABA is about changing the environment, not the individual, because once you change the environment, the individual will change as a result. Any areas of difficulty exist because of environmental issues (in the vast majority of cases).

Thanks to a huge amount of hard work by a great many people, where I am, behavioural approaches are the backbone of what we do. The joy and excitement and pride that so many school staff in then seeing children blossom and develop is indescribable. It makes me leap out of bed every morning, full of excitement about the day ahead and what new changes we will see.

That may make me sound like a nutter or someone who has drained the best part of a bottle of wine but it is true. I wish I could give you more specific examples but that would not be professional of me. All I know is that I want for other people's children the huge changes I have seen in my own child and that is what we are getting-without spending anything over and above the money alreay allotted.

A consultant I have recently come across, aims firstly to reinforce the behaviour of the teaching staff, by showing them quick wins for minimum effort and to build their trust of her.

She also makes it clear to the school that they are not soley responsible for the child's development, and that the parents should be charged with some responsibility for this too.

I quite like her.

inappropriatelyemployed Sat 09-Feb-13 19:52:43

I agree Moondog.

The sad thing is our school was really welcoming to the idea of ABA but after two days with a guy who pumped out a generic report and wanted masses of data monitoring on DS's compliance with teachers' requests, and a lack of any defiinite plan, they switched right off because they did not see DS as a child who was refusing requests, and did not see the approach as relevant or helpful.

Now they see ABA as not helpful to a chld with AS although they are paying for it out of their own pocket for another younger boy with classic autism.

moondog Sat 09-Feb-13 19:55:38

It's also a hell of a thing for people to have someone come in from outside and tell them what to do. You need to have excellent social, communication and diplomatic skills. You need to keep nodding and msiling and cajoling and persuading and always, always always stay on side with the people whose behaviour you are trying to change (they are the environmen that you need to be changing) otherwise you lose their goodwill and then you are stuffed.

inappropriatelyemployed Sat 09-Feb-13 19:55:59

That sounds good star. Our therapist seemed to want to concentrate on training and not skilling DS or staff. His needs are subtle but significant e.g. He doesn't get body language/ non verbal communication, he doesn't always see why people need to know what is in his head (eg he doesn't give his explanation when things go wrong), he forgets things and can't organise himself and very high anxiety.

I had made it very clear what DS's needs were too,

inappropriatelyemployed Sat 09-Feb-13 20:00:01

Moondog he really tried but in a very creepy way. The report was all full of how fab and warm and gorgeous school was but then full of lists of things that could be changed if school wanted him to work on them.

He came in, made DS have an absolute meltdown by forcing him to stay by the classroom when he was having an anxiety attack, telling him he had to obey the teacher and couldn't pick and choose what he liked to do (anyone who knows DS knows that he is so far away from feeling like he is control at school) and ally turned school staff off.

Yet I get feeling this was done for the benefit of the staff!

moondog Sat 09-Feb-13 20:04:47

Oh dear.
It's such a bloody gamble, parting with ££££ to get people to help with your children isn't it? I often think about it and how hard I would have found it. The person I found to help me was someone I met while studying for my MSc and she has become one of my biggest allies as well as a dear friend.

inappropriatelyemployed Sat 09-Feb-13 20:26:44

It's a lottery and I got this guy as a recommendation from someone with a lot of experience. It was just out of his comfort zone.

HotheadPaisan Sun 10-Feb-13 08:26:08

Really interested to see the focus on ABA making changes to the environment too, too often it focuses solely on the child. I remember a thread on here where someone said a teacher had implemented a six-second rule of no questions after an instruction and the class just started to quietly get on with the task more often.

moondog Sun 10-Feb-13 10:00:53

Well if it isn't being made explicit to you that changes in the individual will only come about if changes are made in the environment (and remember that changes in the behaviour of others greatly form that environment) that's rather concerning. In that case what is being practiced is not ABA but random attempts at behaviour modification with no reference to the huge body of research that demonstrates how best to achieve what we want.

Those who possess good language skills are at an enormous advantage of course because you can use language to explain behaviour that is rule governed. Thus a simple example of rule governed behaviour woulod apply to getting up in the morning. I find it hard to rise early but do so because my boss has explained to me that if I get to work late, I wll get the sack.

However, a non verbal child with a severe learnnig disability is not going to stop self harming because we ask him nicely to by pointing out that he is hurting himself physically and distressing his family! We then have to look at what contingencies are at play. He might be doing it for attentino because when he does, people rush to his side. Or to avoid tasks as demands then stop. Or to express distress at excess noise. In all cases, we have to change our behaviour and the environment and then he will change. It wil take time and patience and discipline but that is what we are paid to do.

So for more able children ,there is going to be a balance of rule governed behaviour (explainig what is and isn't socially acceptable) in addition to environmental changes. It's not about blaming the child-nothing could be further from what ABA is about. We aren't surgically excising undsirable behaviour. We are changing what it is we all do to set in train a series of steps that will help him.

My dh knows that nothing stresses me more, when I come in from a long day, driving from school to school and talknig to scores of people than him tackling me straight away on domestic issues. I need to have at least 30 mins. decompression. This used to irritate him beyond belief and we woudl then have huge rows over my perceived 'lack of interest; in domestic issues but I led him to understand that a tweak in his behaviour (ie leaving me for 30 mins.) would bring about a dramatic one in mine (ie taking an interest in what the electrician said or the credit card bill).

HotheadPaisan Sun 10-Feb-13 10:11:15

Yep, saying my name and waiting for surfacing time is needed to make sure you've got my attention.

This is why we've never pursued ABA, we could never find anyone who had sufficient understanding of the interplay of it all, that and one consultant telling us that behind every anxious child was an anxious parent.

Right now we have a combined approach, we make some adaptations, so does he. He gets rewarded when he does the things we like and we help him with the things he finds difficult. There is an analysis of behaviour underpinning it, we generally know why he does what he does and in the early days I think we did reinforce some of it, mostly though I think he will get there in his own time when he feels relaxed and comfortable and trusts that those around him aren't going to push him too far too quickly.

moondog Sun 10-Feb-13 10:22:08

That's disappointing to here.
The challenge is of course that often one inadvertently reinforces behaviour that one thinks one is actively discouraging (example being how a child continues 'playing up' because by doing so, she has her parent's attention.)

I remember gonig for a walk with my sister and one of her kids refusing to walk. There was a big scene, with her cajoling and persuading, him refusing, all the rest of the party stopped in their tracks, everything getting worse. I told her to just stop cajoling and walk away and not look back. We all did. For about 5 mins. he didn't move and she nearly caved in but eventaully he got up, ran to us and we carried on. A trivial example but one that demonstrates unintentional reinforcement.

I'm no guru or paragon of parenting. I do my fair share of shouting and losing it, at which my dh loves nothing better than to whisper in my ear 'What would your ABA pals says if they could see you now eh?'.

However, reflecting on about 5 years worth of collaborative work in schools with education staff, every single successful interevention (and there are scores) has come about because we have adjusted the nevoronment first and not the child.

HotheadPaisan Sun 10-Feb-13 10:33:26

I was an absolute master at walking on, often with my heart in my mouth but it had to be done. I was lucky that he was so nervous/ cautious that he couldn't stand for me to get too far ahead. He does bolt occasionally now, I can't predict it so I just have to hope he'll stop and he usually does.

Provision really is poor around here, there are hardly any practitioners but his TA has got him on task/ reward and it's working. He is able to kiss goodbye and go into school on his own now too, that has taken 2.5 years. I would never leave him without him 'letting me go' though and it worked, just had to be patient. I was never going to allow a frightened, unsure, overwhelmed kid to be prised off me.

It's tricky, sometimes I think people think we exacerbated some things, sometimes I think they did, mostly I think everyone realises that he has a set of difficulties where negotiation and compromise and task/ reward is the way to go.

I think that is why it is so difficult being the parent therapist. I often know the theory but it is my life, not my job and it can be very hard to stay objective when confronted with new behaviour and analyse both the cause and best way of handling it when you're trying to make dinner fast, in order to get the kids to bed on time so you can get out on a rare date, - particularly as you know correct handling will be best in the long term but require extra time right at the time you don't have it.

moondog Sun 10-Feb-13 10:57:39

'particularly as you know correct handling will be best in the long term but require extra time right at the time you don't have it.'

So true!
So contingency for you is deilivery of reinforcement ( ie getting things to go your way)
Immediate reinforcement-leaving the house because you have done up your child's coat
Delayed reinforcement-taking time to teach him to do so which is difficult as you are already late and your dh bellowing in the car )

Yeah, so like most people, I just shout at them, relieve my frustrations, cause tears, get a date on time and spend it mostly guilty and desperate to get back to cuddle my children!

HotheadPaisan Mon 11-Feb-13 20:07:25

I really don't think that message about adjusting the environment comes across when people think about ABA, I think people think it is all about adjusting the child and then you get the 'doesn't generalise' defence and that's the end of that.

Daphne Keen recommended ABA for DS1 btw, but absolutley no chance around here and like I say my forays weren't too productive but I incorporate a fair amount into daily life.

moondog Mon 11-Feb-13 20:19:56

Yes, that is perception of old style home based programmes particularly but it is patently not true to the spirit of ABA. It's not ABA in fact. The first thing we point out to all involved is that if you want the child to change, you have got to change first, whatever it is you are doing with him as it is patently not working.

There's an Einstein quote to this effect-something about madness being essentially doing the same pointless thing over and over again and expecting iot to have an effect.

HotheadPaisan Mon 11-Feb-13 21:07:39

Yes, one behaviour analyst turned up with a load of table-top paper-based activities, DS1 was 5 and just wasn't ready for that. We were more concerned that he was terrified to go out and school was going really badly as he found it all so overwhelming.

It's tricky, and it was a risk, but we completely laid off the academics and focused on getting him out and trying new experiences - the cinema for example which has hugely broadened his interests and leads to him making story books.

The reading and writing is really coming on now (he's nearly seven) but it might not have worked. Still way below his cognitive ability, and that's the next challenge, but there is progress and I think once he gets it more he'll be off, his writing is certainly getting better and better.

I wish we had found an ABA person I felt we could work with but when you're dealing with control issues and a child who had become so passively and actively avoidant (due to anxiety) that not a single motivator would work, I just felt no-one really got it (except for people on here). We had to create an environment where we could meet him halfway. And that is reaping rewards now. As soon as his anxieties are reduced he is a completely different child.

moondog Mon 11-Feb-13 21:15:00

Sounds really great.
The first thing you do is pair yourself with reinforcing activities.
Doesn't matter what they are-you want the child to associate the person doing the teaching with enormous fun and laughter and pleasure.
Doesn't sound like your BA did that which is extremely worrying.

HotheadPaisan Mon 11-Feb-13 21:35:21

She did mix it up, got down on the floor etc but he was wary and unfortunately she chose a bad toy to make an example with, he was inconsolable and she felt bad she'd gone too far, he is very, very sensitive with an extremely fragile ego. We still stand our ground but you really do need to pick your battles, he was never going to be able to comply easily, it needed a slower approach.

But all irrelevant as she wasn't available for very long and there was never anyone else locally. If someone set up around here there would be loads of opportunities I think. And as much as some professionals here are anti-ABA, school have sussed it with task/ reward.

moondog Mon 11-Feb-13 21:51:48

The gratifying thing where I am is that everyone has embraced this approach with open arms and open minds. We can't keep up with the demand which is so wonderful.
I'm talking regular schools here too. Nothing fancy or fee paying.
Just ordinary people in ordinary places realising that they can make a massive difference to kids' lives and that everyone can have a wonderful time doing so.

Kleinzeit Mon 11-Feb-13 22:43:37

That’s nice to hear moondog! A behaviour specialist (dunno if officially ABA or not) did a lot to advise DS’s school and create conditions in which he could learn. Our local authority has a team who can be called in to observe challenging children on the autism spectrum and advise teachers and TAs. The specialist didn’t spend time doing exercises with DS, but she did get to know him and advised staff on strategies (including how to interact with him and how to arrange the furniture!), made tailored visual timetables and wrote social stories. She was a great help.

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now