Live webchat with Professor Richard Hastings, MONDAY MARCH 17, 9pm

[RowanMumsnet]

Following on from this thread, we're pleased to announce that Professor Richard Hastings will be joining us for a webchat next Monday evening.

Richard is currently a Professor of Education and Psychology and Cerebra Chair of Family Research in the Centre for Educational Development, Appraisal and Research (CEDAR) at the University of Warwick. He is a researcher with interests in educational interventions, including early intervention, for children with learning disability (LD) or autism; mental health and behaviour problems in children and adolescents with LD/autism; and the experiences of families raising children with LD/autism. Richard is working to make research findings and evidence available to parents, including through his blog.

We hope you'll be able to join us on the night; if you can't make it, do please post up your questions on the thread in advance, as ever.

Thanks
MNHQ

@RaRaTheNoisyLion

Thank you Professor. I will continue to debate the issues surrounding ABA in a 'mindful way'. What do you think?

Good idea - focus on the evidence and not the heat around ABA

Thank you for the link, Professor. That made really interesting reading. Funnily enough, each of the several families I know with more than one child on the spectrum have more than 2 children. It is not the eldest and next child that are affected, but the eldest and youngest, with children in between unaffected.

@Levantine

Your answer to Mollyweasely was fascinating. I had got so used to thinking about triggers for my ds that I had not really thought so much about consequences, or rather I have been reluctant to "punish" for behaviours that are often stress induced. Where would you start unpicking this? How to do you start to undo those patterns of behaviour at home without massive meltdowns?!

The starting point is to gather some data. All I mean by that can be as simple as an ABC chart (www.ncld.org/learning-disability-resources/checklists-worksheets/antecendent-behavior-consequence-abc-chart). Nothing fancy about these at all. Each time a target problem behaviour occurs, record is as much detail as you can the context and what happened just before the behaviour occurs (include who was around in this, plus environmental aspects such as noise). Also record what happened as a result of the behaviour (pretty much immediately following) - who did want, what happened to the child etc. It can also be worth completing a Scatterplot (shown in this original research paper - www.ncbi.nlm.nih.gov/pmc/articles/PMC1308031/). This is even simpler and records what time of day behaviour problems occur more typically. This can help you think about what is normally going on at this time.

What you are then looking for are patterns. What changes as a result of the child engaging in the behaviour? If you like, what is the child "getting out of this behaviour" or what are they communicating they would like to see change. Typical things are increased attention from other people (even discipline/apparent punishment can be preferred when you're getting little attention, note), access to things like food, activities, or games; and avoidance of demanding or disliked things, and even escape from demands/disliked things (classic when people move children to a nice quiet place each time they engage in a problem behaviour). Finding some kind of reasonably reliable pattern gives you the ideas about what to do about it.

@RaRaTheNoisyLion

'I?d also add that the contingencies for professionals and services need to change so that they get funded when they produce good outcomes for children and families. That might change some behaviours!!'

Hooray! It would begin with the meeting of very low targets but quickly push up the standard.

Unfortunately such a system has been proposed iirc with the introduction or personal budgets but services are fighting tooth and nail to prevent parents having any control over provision.

I think that personal budgets are perhaps more about choice. However, choice seems to be limited (so where's the choice) and also if you don't like the outcomes where do you go next (given the lack of choice in the first place)? I agree that this could be a part of the solution but at the moment it seems to me that there are real dangers with personal budgets just as there are problems with the current model.

@bialystockandbloom

Levantine when we started our ABA programme for ds (when he was 3) we realised it was all about changing our behaviour to ds, and about changing how we responded to him. Learning how to withstand the massive tantrums when we first started saying "no" to his 15th demand for juice that day was one of the first things we had to learn...

And I bet that was really tough too - which is why these behaviours get engrained and can persist for so long. I hope you had really good support to work your way through that.

Very interesting re avoidance of difficult situations. This certainly one if the big triggers for dc2. And yes we also do the 'go and calm down in your room' which might not actually help!

However I have to say dc2 is a completely different child at school. But I think it's for a different reason. At school he will just 'keep it all in' which means that he will then blow up at home at the slightest thing.

@StarlightMcKingsThree

What is the most basic straightforward answer to an opposition I have heard regularly to ABA:

'We believe in intrinsic motivation and not extrinsic motivation here, and ABA therefore does not fit with out philosophy'.

You are then given about 10 for a reply.

Ask the s to define what they mean by intrinsic motivation. This seems to translate as lets wait for the child to get on with this - and then we'll wait forever!! Here's a quick paste of a section from my 15 criticisms of ABA blog as it is where I pick up on this issue:

" 5. Reliance on “external rewards”

There is a collection of criticisms that seem to me to focus on the idea that ABA interventions somehow force a child to learn. Children are offered “rewards” to perform/behave in certain ways and so this is not real learning – the children are not learning real skills. A related criticism is that ABA interventions make the child too reliant on the structure of the intervention and so they do not learn to occupy themselves.

These points touch on the motivation to learn. I cannot see how a child can be forced to learn. It is certainly the case that skilled ABA practitioners are very good at motivating a child to engage with learning. The reason that reinforcers are applied in the context of ABA interventions is because basic research on learning demonstrates that we learn through the gradual shaping through reinforcement of successful ways of behaving. New skills, once learned to a fluent level, “self-maintain” because they lead to success in the child’s environment. The whole process of generalization and maintenance (see above) is all about “real” learning and long term change in behaviour.

Why do children with autism often have to be taught using “rewards” delivered reliably by a teacher in the context of the intervention programme? Because they have often failed to learn key skills by other means. Therefore, they need to be taught these skills. The way to teach new skills is by the behavioural teaching methods used in ABA interventions.

An important outcome of any intervention, and ABA is no exception, is that a child develops learning-to-learn skills. These skills can be taught like any other. They might be examples of what ABA folk sometimes call pivotal skills or behavioural cusps – skills that once learned open access to other learning reliant on these building block skills. In addition, children can be taught self-management skills. They can monitor/record their own learning and make adjustments to their approach to learning based on this information."

@StarlightMcKingsThree

Oh probably too many questions from me but how do I deal with the fact that every professional I come across tells me that my son has a problem generalising yet NOT ONE can give me a real life example of this that APPLIES TO HIM, and in 7 years I have never seen an example either.

I have seen difficulties caused by language problems i.e. understanding 'more' and 'add' for example, but once that has been taught he is fine with it.

Is this 'generalising problem' actually a problem for children with ASD, or simply down to the fact that they aren't taught that a concept applies across situations. Because once my son is taught it once, he actively enjoys looking for parallels.

Sorry, probably one (or more) question too many. Really have enjoyed the chat and thank you SO much for coming......

My count is up to about 20 questions for you Starlight. In general (so not every child), children with autism do seem to have characteristics that make it hard for them to generalise learned skills. All this means is that any intervention MUST include plans for how to generalise and maintain any new skills. However, this is really no different to any child. Generalisation is a key phase of learning and is often underestimated so that people see an ongoing problem and fail to realise it is a generalisation problem and not one perhaps of the initial learning.

Generalisation skills are also a general class of behaviours. Perhaps your son is already strong in those skills, or has been taught them directly by someone who realises how important this is!

As you say, there are also some classic areas of problem for children with autism. You identify some. An example from our recent work on online reading for children with autism was that we had to directly teach some children the concept of negation (e.g., select this if it is NOT that) so that they could follow all the instructions and tasks within the reading programme. However, these things can be directly taught as can an element of their generalisation to other problems.

Thanks Richard. I think i've resigned myself to the fact that we need help. I have a parents evening later this week so I will take it from there.

Incidently do you think a change of school at this time be a really bad move?

We have the option to move him to the feeder school of the secondary. I can think of lots of pros - better sport (which is his thing), no entrance exam/interview in Y6 and the opportunity to start afresh but there's the obvious problem of making new friends

@StarlightMcKingsThree

Yes, Had to take a chance. As parents we have so many questions that people either don't want to answer or don't know how to, or don't want to admit they don't want to or don't know how to.

It's truly appreciated having a small window of opportunity to talk to someone NOT defensive and who knows stuff!!!

Just as long as you all recognise that I'm applying (maybe informed) guessing at several points and just hope this gets you going at least somewhere else to find some help or useful information. I know what I don't know and hope that was clear!

@Upandatem

'We also have a plethora of effective psychological interventions for specific phobias and other anxiety issues, so I?d hope that these would be the first port of call to support children with autism.'

Thanks, like CBT and play-based therapy? I love Huebner's books btw. But sometimes you need to create some space for those strategies to be tried and that's what I think medication achieved. Temple Grandin seems fine with medication and that's important to listen to I think.

Please see my reply to cansu today - sorry, I should have read all the new messages today first to link the replies together.

Do you have any links on articles about the "learning to learn" skills?

Somehow I've successfully unlocked the creative play key in DS's brain via my very amateur homeschool programme (first hints shown at 7.5 and it's taken till 9.5 to blow open that door!). no generalisation of skills was one of his most entrenched autistic traits so you can see why I'm feeling so excited.

For obvious reasons this opens up a whole new world to him and "learning how to learn" is my next BIG long term goal.

@PipinJo

Hi Prof I should have said Home Tution which is an Education Funded Grant for all children with a Diagnosis under school age in Ireland. I should have been more clear but thought you were aware of Home Education Grants for pre school children for EI in Ireland. Of course it is up to the parent what method they use ie ABA or Spell or TEACCH etc but the majority of parents go for ABA of course. Hence why I call it free ABA for all children prior to school age with an ASD diagnosis. It could be free TEAcCH if that parent chooses but as stated most go for ABA. The child then gets so many hours a week with a qualified teacher 1:1 in the choosen method of early intervention. I am aware of the ABA schools situation but I meant prior to school(5yrs and younger) for early intervention. It is sad UK does not follow this model.

ok see what you mean now. I didn't know about Ireland so must read up about it. However, sounds like a very similar model in Australia. In the UK (or England anyway) wouldn't it also be possible to persuade a nursery provider to develop a behaviourally-informed or more broadly evidence-based pre-school setting and then the pre-school child care support monies available could be used to support it? In Norway, we evaluated a pre-school model where the same resource allocated to children with autism was used to provide an ABA model instead of standard eclectic special ed (i.e., it didn't cost any more) and of course got much better outcomes. I wonder if working with a provider or two and some parents whether such a model could be designed in the UK using pre-school childcare funding schemes (that I don't know enough about now - my oldest child is now 13; and Yes I was a young parent before you ask...). Also happy to send a copy of the research study to anyone who emails me [email protected]

@Upandatem

I was thinking as well that the responses of an autistic brain are not just psychological in nature. There are physical brain differences and if medication can alleviate some of the difficulties I don't see why it shouldn't be tried, along with a whole host of other things too.

You're right and I tend to play this down much of the time when I'm talking about kids' learning because I'm so sensitive to the issues we've debated on this thread that people so often attribute problems a child has to "the autism" and fail to look any further. Being too focused on "the brain" I find has the same effect.

So, undoubtedly, there is a biological contribution to mental health difficulties. Brains may be different for autistic children and therefore so may the biological contribution to mental health problems. It is also really important that we know HOW medications are working though so we're clear that they are being used directly therapeutically. Children can be "drugged" effectively to stop their challenging behaviours, for example, but this isn't a therapeutic use.

As a parent, as with any non-medical intervention actually, I'd want a clinician to explain to me exactly how this medication is meant to have its therapeutic effect - what exactly is it targeting for my child.

@ouryve

Oooh, that is an interesting one. My eldest is a bright boy with ASD (there are days when I find the high functioning label highly inappropriate, though) and my youngest is cognitively far more limited, non-verbal etc.

Though that said, there are a fair few families here with more than one child with ASD or AS, which don't show that pattern.

Absolutely, and all this kind of research can tell us is about the general patterns across the population and not what might happen for an individual family. It does look like there is a pattern though...

@DiddlePlays

Very interesting re avoidance of difficult situations. This certainly one if the big triggers for dc2. And yes we also do the 'go and calm down in your room' which might not actually help!

However I have to say dc2 is a completely different child at school. But I think it's for a different reason. At school he will just 'keep it all in' which means that he will then blow up at home at the slightest thing.

Can I just point out here that I think this is a really cool skill. dc2 can differentiate the nature of the environment really clearly. There may be something (and it is obvious home vs. school of course, but less obvious at other times) that signals when certain ways of behaving will lead to certain outcomes and when not, or when it leads to other outcomes. Children learn to discriminate between contexts and what will be "available" to them in different contexts. Really glad you mentioned this point as I should have included this discrimination stuff in previous responses.

@OldBeanbagz

Thanks Richard. I think i've resigned myself to the fact that we need help. I have a parents evening later this week so I will take it from there.

Incidently do you think a change of school at this time be a really bad move?

We have the option to move him to the feeder school of the secondary. I can think of lots of pros - better sport (which is his thing), no entrance exam/interview in Y6 and the opportunity to start afresh but there's the obvious problem of making new friends

This may not be appropriate, nor actually what you're feeling, but...I hope you'll be able to go forward with a real energy for accessing support and help rather than being resigned to having to seek it. It might be easier to persist until you get some helpful response if you have that positive fire inside when you ask?!!

Hard to say re change of school, and you're clearly already trying to balance the pluses and minuses of this. What I would say is that in general we know that being happy in school and having positive relationships with teachers (with at least one really great teacher) are good for children's outcomes. I can't imagine it is any different for children with disabilities. So, I'd want to be pretty sure that the change would lead to an increased likelihood of that for my child all other things maybe being equal. Seeking help now may be a really good test for the current school and teacher(s).

@bochead

Do you have any links on articles about the "learning to learn" skills?

Somehow I've successfully unlocked the creative play key in DS's brain via my very amateur homeschool programme (first hints shown at 7.5 and it's taken till 9.5 to blow open that door!). no generalisation of skills was one of his most entrenched autistic traits so you can see why I'm feeling so excited.

For obvious reasons this opens up a whole new world to him and "learning how to learn" is my next BIG long term goal.

Good prompt, because if you search learning to learn on the internet then that will lead you to sites that talk about stuff that I didn't mean. I meant it in the sense it is used in behavioural education programmes of various sorts. So, this link may be a good start - specialed.about.com/od/ABA/a/Learning-To-Learn-Skills-Foundational-Skills-For-Academic-Success.htm

@Upandatem

No stone unturned here, but I know what you mean.

'I'd want a clinician to explain to me exactly how this medication is meant to have its therapeutic effect - what exactly is it targeting for my child.'

Agree. Good, I want ABA to get along with medication where necessary, and SALT and CBT and OT, all of these things, they must all work together to help the child. You're absolutely right that I want to try and prevent future potential mental health problems.

Must admit, your comments about parental stress are giving me pause for thought. I'm honest with DS1 about the effect of his behaviour on me, without guilt-tripping him, but I am very aware that I cannot keep up this intense and incessant pace forever, and I'm actually quite relaxed about not pursuing everything always.

Thanks again. Mindfulness would really be worth a look in terms of ongoing skills for coping. Let's face the reality that the system is unlikely to get miraculously better in the next year or so. So, it does mean parents need some tools that can help with their own well-being and actually also give a different perspective on their relationship with their child. Mindfulness seems to be great for both. It does take practice - it's no pill with instant effects. However, I can thoroughly recommend it. In addition, the research evidence is very promising in terms of positive effects for parents of children with autism/ID and ultimately for the child too. There is an online course available in the UK (www.bemindfulonline.com/) and also I have found Mark Williams' book really helpful (www.amazon.co.uk/dp/074995308X/ref=as_li_tf_til?tag=drdannypenman-21&camp=1406&creative=6394&linkCode=as1&creativeASIN=074995308X&adid=0C65KDVEXA3E12FA555K&).

Everyone (exaggeration maybe) is doing mindfulness, so it is a completely "normal" thing, which I think is great for parents of kids with disabilities.

I think I have now finished working through all the questions. Thanks so much for engaging with this. Hard work for me - you've stretched my ability to try to give something useful back to you all when I felt way out of my depth. Thanks also for nice comments and feedback, and the little prompts when I hadn't nailed it.

I know I haven't commented further on every response or comment on my responses (although I have read everything, and Thank You). However, I think I have responded to all questions. Please let me know by the end of tomorrow (Weds 19 March) if you think I have missed something and I'll rectify on Thursday or Friday.

Best of luck to you all, and I hope we meet sometime (those of you I don't already know by other human names)

Hi Professor,
Just wanted to say a really BIG thank you for your input. I really appreciated the time you have spent on here yesterday and today. Also realized that what was supposed to be an hour long was probably more like 2 or 3 hours! So thanks for your time :)