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

@AlarmOnSnooze

very interested to read the posts on anxiety/fear/phobia and dogs. I would be interested to read replies to those as it is something which affects our household too.

An additional question which has just become relevant to me - how can parents go about getting better and more effective diagnosis? It took over 2 years for dd1 to be dx'd, and she was as severe as they come when an infant/toddler. ANd then following that, no intervention was forthcoming at all unless we chased and achased forever, trapped various people in their lies, and ultimately threatened to pull out of a useless (for us) EarlyBird course (which clearly our area wanted to get numbers into) - suddenly we got some services as long as we stayed on the course

with dd2, we have been told at every turn that she is fine, NT, no problems. She was dx'd with AS last week.

ANd now with ds - health care has been outsourced to Virgin in my area, and initally I wa simpressed. From referral to first paewd appt was only 3 months, and this was with ds being 17 months at point of referral. All good. However, I have just received the result of his referral on for SALT - he has been put on the waiting list, and they are unable to provide a timeframe wihtin which he will be seen. When he does actually reach the top of the (unspecified) waiting list, I will be offered a parent-only PARENT EMPOWERMENT WORKSHOP (their capitals!), so no earhtly use for ds. otherwise, I can look at the ican website. ds is now 20 months, and I have no timescale for when he will be seen at all - a high risk infant, with several close family members having dx's, who has clear speech issues (no discernible speech at all) as well as a coule of other red flags.

so, what can be done by overstretched and time-poor parents to work towardas a more efficient dx/service provision? Without,of course, giving up and oging private...

AlarmOnSnooze – that is a catalogue of very unhelpful responses (I think I’m understating that…). I just don’t know is the honest answer. Diagnosis is clearly important, but even more important for me is to make sure children and parents have the supports that they need. At present, the former is a clear pre-requisite for the latter which in my view is unfortunate partly because it might over-medicalise children with disabilities, and partly because it makes the system complicated (and long-winded, as your story shows).
The answer? There are lots of parents fighting individually (and they are often isolated) and also lots of organisations trying to change things, especially charities. However, rarely is everyone pulling in the same direction. If one were being cynical, this can suit services and professionals because there is a lack of a cohesive voice about what is needed and what needs to change. I can also see that the situation overall can be confusing for commissioners and service providers – again, where is the coherent voice that they can use to guide their work? I have suggested before that in the autism field, and child disability more generally perhaps, there is more that unites parents, charities, and many professionals than divides us. However, we’ve not been good at compromising and combining that voice into something very loud that might be heard. Until there is a united vision and action, it might be hard for us to get anywhere especially in the current economic climate.
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!!

@oakmouse

Hello Professor Hastings,

I was wondering what your thoughts were on the question of punishment and discipline with regards to ASD children. As a mum of two young ASD children (one girl, one boy), I feel under pressure to make greater use of punishment (which is what people tend to mean when they say 'consequence' although the two aren't identical in my eyes).

I find punishing them more often than not seems to wind them up and distract from the original behaviour so that they become fixated on the punishment - or reward - and get anxious before they have even done anything! I have taken advice from a friend on the 123 magic parenting course but their strategies just seem to make things worse.

I really want to be consistent and have clear boundaries but it is so, so difficult - if my children are feeling wobbly, they behave badly, if they feel calm, settled and clear they behave well and it all seems to hinge on prevention. Punishing them after they have misbehaved seems to be like locking the stable door after the horse has bolted.

I'm not talking about behaviour which is obviously pushing boundaries, but there are so many grey areas! Any tips? :)

You're right to say oakmouse that it is tricky even defining what "punishment" is. Something that is a punisher reduces the likelihood of a behaviour occurring again in future in similar circumstances. Because we have to see the effect on behaviour to work out whether something is a punisher (i.e., it is defined functionally, but the effect it has) we can't tell what might be punishing to a child at a first look. Children will find very different things punishing. Some things we might think are designed to be punishers will in fact act to increase a child's behaviour. So, it can help, as you seem to be doing, to note the effect of what you're doing on the child's behaviour.

Most important though is to work out why a problematic behaviour is occurring - especially, what does the child typically get by behaving in this way. Until that is clear, it is hard to devise a response. General parenting advice may not work because it is just that - general, to deal with a typical range of problems.
You might find it helpful to look for resources for parents that take a Positive Behaviour Support approach, which is designed especially to help deal with problem behaviour in children with autism and/or intellectual disability. Take a look at this for starters

Ooh have just seen your link to the research paper on siblings, and to the sibs. charity - brilliant, thanks!

Thank you so much for answering my questions. I'm reading all the others and their answers too. Really interesting.

Any advice for the mum of a 9 year old boy who i fear has selective mutism? He speaks to a limited number of people outside home though thankfully his teacher is one of them. He also has a small group of friends who he will speak to but no-one else.

I'm worried that although he's very bright, he'll be overlooked when it comes to moving to high school (2 years time)

He has been like this since an early age and it's not getting any better. Is this something we can handle as a family or does he need professional help?

MNHQ Please can you convert all of the links? I see myself getting NO work done this week.......

@LPT123

Hi~!

My question is around mindfulness, autism and OCD.

My 12 year old son has autism, reasonably high functioning (part time in mainstream with one of our therapists). He has had OCD for a few years, particularly with intrusive thoughts, but also hand washing. Sometimes he deals well with things and shows determination to beat the OCD bully, and at other times he gets really down on himself and generally mentally worn out by his compulsions. He just wants to be a typical boy.

I have started learning a lot about mindfulness, and it seems like such an amazing fit for his situation. If he could learn to observe his own thoughts and maybe watch them come and go for what they are, it could turn this thing around. He has autism which brings its own issues with regard to attention anyway, but I feel it has got to be worth a try.

I was thinking of using 5?10? minute guided meditations with him 3 times or so a day to begin with, and build up a bit from there. There are some good apps, like Smiling Mind aimed at children too which he might find motivating to use.

I was wondering if you felt this might be a good idea, and whether there was any research to suggest that using mindfulness for OCD might be effective?

thank you.

Hi LPT123. I think the evidence suggests that mindfulness-based approaches can be useful for many problems where we might get caught up in thoughts or emotions. OCD is probably one of those situations. As with my earlier answer about mindfulness, you might also want to consider getting some experience of mindfulness and meditation yourself to understand better how to help your son.
Given your description, I'd also hope that you have been having support from a CAMHS professional? If not, you should probably get a referral through your GP or perhaps the school. Cognitive Behaviour Therapy has a good evidence base for OCD and so this could be really helpful. A trained clinician might well also be able to incorporate some mindfulness support into an intervention approach.

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!!

Ha ha now that would be interesting!!

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

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?!

Thank you so much too for your discussion of mindfulness, I am really interested in this, my 7yo ds is very interested in meditation and I am really keen to pursue it with him.

'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.

@LottieJenkins

Hi Richard, I would like to ask why has it taken so long for there to have been some work done to help deaf/autistic children? I have been campaigning for many years and only now is there a DVD coming out. In my experience it has been,,,,,,,,, Your child is deaf,,,,,,,,,,,, Go to the NDCS Your child is autistic ,,,,,,,,,,,Go the NAS Your child is deaf and autistic Sorry can't help. My son is nearly 18. He was diagnosed as deaf at 2, he was diagnosed as autistic at 12. The autism was masked by the deafness. I was far more devastated by the latter than the former.

This is a very good point LottieJenkins. I'm afraid that we could probably between us also generate a long list of other co-occurring problems that have received little attention.

Let me mention on key process and then another point. The "masking" you talk about could also be called Diagnostic Overshadowing. This can work in two ways. So, it is harder to see an underlying autistic condition in some children (e.g., who are deaf, have intellectual disability, who present with a mental health problem). In addition, other conditions can be masked/overshadowed by the autism. The classic example is mental health problems, that really we're only recently recognising for children and young people with autism (and adults).

A general difficulty though is that the whole spectrum of the human condition (physical, sensory, and mental health conditions) can affect someone with autism. This is the same for a child with intellectual disability. Thus, the total number of combinations of autism with something else or ID with something else is absolutely enormous. So, for these children and their families there are many complexities like deafness which may need some special consideration. I wonder if the place to start gathering all the information that is developed is somehow in a central database. So, the question is how to make sure a DVD like you mention is easily found by parents and young people themselves? Sometimes the information is around but just hidden too well.

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...

@StarlightMcKingsThree

MNHQ Please can you convert all of the links? I see myself getting NO work done this week.......

We'll get on it Starlight but probably tomorrow

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.

Thank you RowanMumnet

Just to warn you all, the Prof does have to knock off promptly at 10pm, so we're finishing up for tonight soon - but he's promised, extremely kindly, to come back and mop up leftover questions at a later date.

@cansu

Hi How do we get experts to see beyond a child's autism when they have multiple problems. I have a child with severe asd who also has a mood disorder and may well be showing signs of obsessive compulsive disorder. As autism is his primary disability all issues are explained as autism and consequently seen as unsolvable and basically par for the course. Similarly I have a child with autism who has severe problems with eating, the prof response is to shrug their shoulders and say oh that's typical of autism. Whilst I know this is related to her autism, how can we get a better deal for her as I know that a neuro typical child would be getting much more help with a feeding issue.

Sorry cansu, I'm reading things out of sync with so many questions to try to respond to! I should have captured a response to your question with that to LottieJenkins. Please do take a look at that response.

In addition, I very much recognise what you say in terms of one of the dangers of the autism label - people attributing everything problematic that occurs to the label, to the autism. Perhaps we have to start by being clear about what is autism. So, every child with autism has autism (obvious, but it will vary a little of course). NOT every child with autism has a feeding problem, or OCD, or a mood disorder. Thus, it cannot be the case that these presenting problems are due to autism. Somehow, young people with autism are at increased risk for mental health problems and other problems. Some of this increased risk may be explained by something directly related to the autism. For example, it is possible that the same underlying genetic risk for autism also affects mental health more generally. However, there are lots of other factors involved.

Therefore, what we are talking about is a series of inequalities. This is an increased prevalence of certain problems in a group of children (autism perhaps) that actually can be dealt with - thus, the overall inequality does not need to exist. We just need the appropriate response from professionals and services. Effective interventions are available for mental health problems and feeding issues, for example.

Thank you very much Professor for coming on, thank you for answering my questions, and all the really useful information.

Now, when are you starting a tour of talks to schools...?!

Now wasn't that worth its weight in gold?
Thank you so much Professor Hastings for doing this for Mumsnetters. It is so appreciated.
Oh, and what a refreshing change to enjoy a webchat where someone isn't trying to flog you something....apart perhaps from a better quality of life for people?

@bialystockandbloom

Thank you for your response to my question

I suppose I'm sort of doing a "bottom-up approach" with my own ds - at mainstream school initially with ABA tutor, now with school TA trained in ABA. This is the first time the school have used this approach, and I hope they'll look at it positively. The evidence of progress in his case (vs progress made under their 'eclectic' support) clearly shows how much more effective it is, and we have undeniably shown that our approach has done exactly what you say - solved problems for my ds (and by default, his school).

Sadly though I suspect until parents generally know more about ABA, and until LAs/schools take on board that as you say, this approach doesn't have to be expensive but can just rely on tailored teaching methodology, this will only benefit such a small minority of children.

Perhaps the services parents first encounter when their child is diagnosed (paediatrics, early years support etc) should be more aware of ABA too - our paed who diagnosed ds hadn't even heard of it! And services such as S&LT too - so far I know of only moondog who is on a one-woman mission to spread the word within her industry

And I totally agree that behaviour analysts themselves should, collectively, be doing more to spread the word.

Many thanks for this reply. There are not enough pro-ABA folks who are also ABA moderates out there educating a whole range of people, professionals and services. We need the reasonable face of ABA out there making sense to people and also showing people how things can be done in such positive ways. More moondogs are needed!!

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......

@StarlightMcKingsThree

Hello,

Wow at all those answers. I'd better get reading...............

You get lots of answers when you ask lots of questions - you most especially!! Tee-hee