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

I have just noticed a request for information on medication and dog phobia. My son, ASD and LD has been phobic of dogs since very small. He has been on Respiridone and late Fluoxetine has been tried but neither make an impact on the anxiety. Desensitising work has been tried, but he is now worse, hyper vigilant when out, always looking for dogs and anxiety kicks in even just hearing a dog backing at a great distance. In close proximity he physically shakes all over, his breathing is of panic and he will try to climb the adult with him or dart into a road.

The desensitising work hasn't yet included a real dog, just pictures and film. Neither if which bother him because he knows they are not real and yet in the field his reactions have become worse.

I will read with interest any thoughts on this.

Thank you.

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...

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? :)

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 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.

Just about to start uploading responses to questions that appeared up to today. Again, I will answer all questions eventually - looks like it'll be a tough call to finish everything tonight!
I should also probably be clear that any views I share are my own and not those of my employer (University of Warwick) or any organisation with which I have a close professional relationship: Mencap (Trustee), Sibs (Research Advisor), Ambitious about Autism (Expert External Advisor), and Cerebra (they fund my Chair in Family Research at Warwick).
I am also not a clinician/practitioner, although I will do my best to offer some response to the practical questions many of you have posed.

Hello everyone - and hello Professor Hastings - looks like everything is ready to go so we will step back and let you get stuck in!

Many thanks to Professor Hastings for doing this and for all the questions and thoughts so far.

@rainbowqueen

Hi there,

My husband has AS. My five year old son shares many traits with his father but functions well amongst peers and in school.

To what extent is it worth exploring my son's possible link to AS, without reading too much into character traits that may be ignored if his father didn't have AS?

My motivation for exploring any link would be to try and prevent my son from going through the hardships that my husband has had to deal with throughout his life.

Thank you.

Diagnosis, and the label then attached to someone as a result, can have very powerful effects Rainbowqueen. Decades of psychological research shows how powerful labels can be. On the plus side of course they may help identify a person’s needs more clearly, they can also prevent mis-interpretation of some behaviour, and services and supports can be targeted more easily (which is reflected in your own motivation). On the latter point, it is hard to provide services for young people with autism unless you know who they are and where they are.
On the negative side though, labels can be damaging. Rosenhan's classic experiments showed how, once applied, labels can be very hard to shake off and may colour how other people see us and whatever we do.
Anyway, the point is that trying to obtain a diagnosis is something that has to be considered very carefully indeed – and this seems to be implicit in your question. I think you’re right to be questioning the value of doing so at this point, rather than simply launching in. If you did start the process, any professional working with you should explore why you may be seeking a diagnosis and whether this is the right thing at this time.
Exploring diagnosis shouldn’t be entered into lightly. There’s no one right answer either. I guess the main point would be to consider all the potential benefits but also weigh up the potential downside.

@Redoubtable

Delighted to hear from you and looking forward to the chat.

Working memory in children who are high functioning with regard to learning e.g. children with ASD, DCD.
Can it be improved and what strategies do you recommend?

Thank you.

This is also a reply to Teawaster’s question received a fair bit later in the trail.
I hope you’d agree with me Redoubtable in that I never doubt our ability to teach children stuff, whatever their difficulties might be. As several well-known educators have been known to say: If a child is not learning, then we’re not teaching them right. On that basis, I’m sure working memory can be improved. As to how? Not an area I’m expert in. I did find a web-link that looks sensible to me and includes some helpful ideas that parents can also work with.

@bialystockandbloom

Hurrah, this is brilliant! Thank you for coming to MN.

Have many questions, and as I'm aware we're only supposed to be limited to one, I think my most obvious one is:

Why, in your view, do local authorities/schools and other services provided for children with autism (minimal as they are) seem so opposed to ABA? Is it cost only, or is there an ingrained ignorance and prejudice about it? And if so, what do you think is the best course of action to address this?

ps MNHQ is this going to be linked on the main board as well as the SN section?

That is a 64 thousand dollar question bialystockandbloom! Your question includes one clue I think. You ask “is it cost only”? I’d argue that there is no reason why an ABA support for a child with autism has to be expensive. First, ABA is simply about the use of what we know from the science of learning applied to “problems” of social importance. So, using ABA methods with a child with autism can be as cheap or expensive as you want it to be.
Those working from an ABA perspective have put together a load of ABA techniques into a comprehensive programme for early intervention (what many people call EIBI or IBI) for children with autism. This is what people tend to think of when they hear “ABA” and “Autism”. However, I would argue that this does not have to be intensive (and so, perhaps “expensive”) but it does have to be of the highest quality. There is no good evidence that intensity has to be high for outcomes to be good. Teach a child well, they will learn. Teach a child a lot well, and they’ll learn a lot!
One core answer to your question is that there are some prejudices and misperceptions about ABA that might lead to reluctance to adopt ABA approaches. Apologies for suggesting folks follow an external link, but I have written a detailed blog about these prejudices and misperceptions.
Getting back to the question, the answer actually is that I wish I knew. I guess prejudice and misperception is some of the problem. However, there are also a lot of other influences on local authorities and schools. The problem is that we’ve not bothered to carry out research to identify what those might be. Persuading local authorities and schools to consider ABA is a behaviour change problem – if we want them to switch to ABA or to start using ABA. Why haven’t behaviour analysts carried out a proper analysis of how to change this behaviour – which would start with understanding the influences on this behaviour.
The good news is that we’ve just started some research on just this issue. I hope that we’ll get at least some answers and insights from that work.
Anecdotally, what seems to have worked is to get a foothold in schools and to solve a problem for them. Mainly, this is working with children with significant challenging behaviour. Show you can get that right, and that the same principles can be used to encourage other learning in school, and maybe there is a way in. So, the bottom-up approach may work at least for now.

@homework

How can you help a child who is able to work things out in there head , but when comes to actually writing things down on paper , just can't seem to get this same information from there head down onto paper .

Homework, I think the key would be to define the issue clearly first. For example, is it actually writing (at speed) that is the problem? Is it holding information in working memory for long enough to write things down (see answer to redoubtable)? How are things being worked out “in the child’s head”? The solution should come from a more precise clarification of the underlying “problem”. For example, you could directly teach increased writing fluency. Working memory could be improved in various practical ways. If the child solves problems using a very visual approach, translating this to the written word involves perhaps an additional translation step that the child needs help with. Could they get a visual representation down first and then use this to translate into a written form that others can understand?

@AgnesDiPesto

Why do you think there is so much resistance to changing service models in UK even when the evidence base is so shaky? I am thinking about early intervention for children with autism being delegated to mainstream nursery carers from age 2 (although that was the last place my 2 year old wanted to be after a massive autistic regression) - what evidence base is there that this is better than home programmes? Soon LAs will have to fund 25 hours of free childcare (intervention) a week, what a waste of money that could be used on home ABA. There's widespread use of diluted TEACCH methods in schools although there is no research base for 'a bit of teacch' and little for the full special school version. And most recently I read about the Justice4LB campaign where again (post Neary and Winterbourne) a young person was taken away from their family for alleged assessment for challenging behaviour / anxiety and died when for the same cost of an assessment unit you could hire your own psychologist and Behaviour team and have them almost move in! Surely it makes more sense to assess and 'treat' someone in their home and community? Can you see a time when we stop trying to fit our young people into the services we have already (schools, nurseries, units, hospitals) and start designing services to fit our young people / that come to them (like ABA does)? I'd like to believe personal budgets or direct payments may provide an answer but sadly most professionals are dismissing those as harmful to service provision / commissioning and making patronising assumptions parents won't know how to pick a quality service. (I am pretty sure LBs mum would have done a better job). I don't really see a lot of common sense in autism / LD provision, let alone research. How we do change this?

Not only is this a long question AgnesDiPesto, but it is a big one! I think bialystockandbloom’s question later on about the school system is similar at core so this is a response to that question too.
My answer would probably distinguish an ideal world from where we are now. In the long term, I think we should be aiming for an education system that works well for ALL children. All children, I’d argue, need the same general approach. They should be receiving education based on learning theory (and I’m sure what we know will still evolve over time) – so, an evidence-based approach. All learning would then be individualised – where the child is at would define where next, and data on whether the child is learning would be used to inform next steps too. All educators would be highly trained in HOW to teach children – how to get them to learn. If this was the case, the education system would work for every single child whatever differences or disabilities and needs they might have. In the ideal world, the education system and teaching would be so good that every child would be successfully educated in a school setting with every other child in their locality. This would also represent full inclusion for all children.
The problem is that our education system is not like this (although I’d suggest we must keep trying to move in this direction). So, at present, we instead may need to focus education for some children in their home environment or in specialised settings (e.g., special nurseries or schools). In my utopia, education also wouldn’t be simply about a school building. It is clear, for example, that the majority of children’s lives are spent at home and not in school. So, that issue has to be understood and needs to inform how we approach children’s learning.
My core argument is that a clear future vision is needed for education in the UK and I think this is probably missing at the moment. We have to know where we want to get to before we can work out what to do to get there. Solve education generally, and we’ll solve the issues for children with special needs. To do this, some clear values/principles have to be agreed. For me, inclusive schooling, home-school partnerships, and use of evidence-based approaches might be top of the list.
At the present time, the solutions may well be to deliver early education in the home environment because the system is not fully up to the task. However, I don’t see this as a long term fix.
Finally, you are spot on when at the end you point out that we have little evidence to go on. Actually, research rarely focuses on how best to organise/design services as a whole to deliver good outcomes for children with SEN. These are the most important questions, but research funding primarily focuses on the biological causes of disability or autism with a tiny proportion focused on questions of educational and social care.
Your long question raises lots of interesting issues, and I know I haven’t responded to everything. Just picked out a few points that I hope are interesting and link to others’ questions too.

@inappropriatelyemployed

Thank you so much for doing this!

I have a lot of respect for, and interest in, ABA as I see it as a potentially very empowering model for disabled children/young people which has a very clear evidence base.

However, my experience with it to date for a 10/11 year old with Asperger's has been very disappointing.

Those engaged with drawing up programmes were very experienced and trained by leading organisations (or based at Universities). They were not charlatans but both seemed to think the views/interests of a child were insignificant and what mattered was what the adults wanted the child to be/do. One consultant had two very lengthy visits to my son's school but didn't even spend time talking to him about at any point during 6 hours spent in school. I know this because I was there.

Neither consultant seem to have any understanding of the reality of secondary mood disorders for children with AS at this age. In fact, they were very dismissive of terms like 'anxiety' as if this was just the child's excuse for getting their own way. However, although they dismissed the use of terms which I felt hindered their agenda, they were quick to use value laden terms like 'tantrum' to support their own point.

The approach seemed to be very 'normalising' and entirely inconsistent with the ideas set out in law in the Equality Act of making reasonable adjustments.

This was not just what I thought. My son's school, who were very welcoming to the idea of ABA (and had paid themselves for a non-verbal, younger child to have it) were very shocked by the scant regard paid to the 'whole child'. We agreed together that we would not follow what was being suggested.

In a nutshell, I asked for help as I had a disengaged, highly anxious 10 year old Aspie who I felt was in danger of completely dropping out of education. Their only answer was to force him to do as he was told.

I now have an 11 year old who is out of school altogether with a package of tutoring paid for by the LA. His mental health is very good but his psychologist says he has suffered a traumatic response to his school experience over many years which borders on PTSD.

So, isn't there a need to admit that many practitioners simply aren't trained or equipped to offer advice and support to children like my son?

Isn't there also a need to ensure that the agenda is child-focused and not normalising?

inapppropriatelyemployed – I have to say that, unfortunately, I’m not that surprised by your story. I think that there is a debate needed about what the focus of ABA should be. My view is that any ABA practitioner should be working on what the people employing them has asked them to work on. The professional agenda shouldn’t be paramount, and neither should assumptions about what ABA “must” be. I have also argued before that ABA is by definition the ultimate approach to reasonable adjustments. ABA is all about changing the environment to promote positive learning for a child. ABA is also the ultimate child-focused approach as everything should be individualised to the child, including what issues to work on, an analysis of why problems are occurring, what motivates the individual child, and then an individualised intervention that includes bespoke measurements of success to check the plan is working. I don’t think any other approach is that child-focused.
So, I don’t think ABA is the problem. The problem, if there is one, is with the people using ABA approaches. Picking up on your first point, the child should always be directly involved in any ABA programme/intervention. Where they cannot communicate well at all, their preferences need to be understood as a matter of principal but also because you need to know what motivates a child to be able to teach them something new. Where they can clearly communicate well (I guess, as in your case), talking directly with the child should surely have been a part of the approach. As far as anxiety is concerned, there are many behavioural approaches to reducing anxiety and teaching the child strategies to better manage their anxiety. This is likely needed alongside making the environment more supportive. It’d be remiss I think to not help the child with strategies for anxiety management.
Many ABA folks are excellent at teaching children to learn new things, but many are also not more broadly trained in the other issues that may affect young people with autism (and other children). So, a single ABA practitioner probably won’t have all the answers. A really good one will work well with other professionals to be more rigorous at defining problems such as “anxiety” and working directly on solutions (and measuring success). This is analogous to teachers – they are education professionals and don’t know everything about supporting the development of children, especially in broader emotional domains perhaps.

@StarlightMcKingsThree

As a parent, how can you introduce or talk about ABA to professionals without getting the instant cold shoulder and treated as having been brainwashed by unethical cowboys?

I admit I didn't keep adequate data on my attempts, but I can't imagine there are many approaches left I haven't tried, having how been through 3 sets of LA departments and 8 schools.

The first of many questions from you StarlightMcKingsThree! I’d love to hear sometime what you have tried. Perhaps you could email me off-chat.
Anyway, we have to get back to my answer to bialystockandbloom here. I suspect that this will need a multi-component approach. You’d hope, wouldn’t you, that being evidence-based, child-focused, and ethical should be enough. But there are clearly multiple influences on professionals and we’ve not done well at understanding what these are. I find it hard work myself, and I have a lot of ammunition at my finger-tips brought together over many years. What it is like for a parent, I can only try to imagine. I hope that the totality of the stuff that I’ve published through my blog on the series about “autism and evidence” might just help parents with a core narrative. It is complex though - takes a lot of blogs to explain it all, and it probably still isn’t finished either. So, it isn’t right that it seems to be the parents’ job to explain this to professionals.
At the moment, I’d like to see ABA moderates (a shorthand for people, like me, who are pro-evidence and, therefore pro-ABA, but not extremists) working together with parents to talk to other professionals about ABA. Trouble is, too few people seem to agree with me…

@mymatemax

How do you see the new child & families bill, Local offers & EHC plans improving things for children with LD/Autism

If you were involved in establishing a local offer for a Local Authority what would you like to see in there as standard that isn't commonly available now?

What would be top of your wish list?

I’m sceptical, to be honest mymatemax. I do think that there are some good ideas within the new Bill. It is important that we consider the “whole child” (see inappropriatelyemployed). Therefore, a single Plan covering education, health and (social) care is hugely important. I hope the family is central to these new plans as we can’t separate children from their family environment. Although there may be some duties on services to jointly fund, and to deliver all aspects of the new Plans, services in the UK are a long way from being coherent around the child and family. Thus, there are so many different services, different professionals, and local variation, that I’d worry that large amounts of resource will be spent in the co-ordination effort and/or in turf wars rather than in delivering support to children and their families. I hope I am proved wrong. Another worry is that it seems complex from the outside, and that this may disadvantage families who have few resources (either economic or psychological) to fight for their child.
In terms of an ideal content for a local offer? I’d really like to see a coherent cradle to adulthood set of services. I’d want all families to receive an initial educational/information/skills-focused intervention when their child gets diagnosed or just early in their child’s life. This “course” would focus on the big ticket risk areas we know about for children with SEN/disability and their families: communication/language, sleep, feeding/eating, behaviour problems, advocacy skills for parents, parental stress-coping skills. When any of these issues then emerge later as “problems” for the child or family, they would already have the basic skills to look out for the problems but also know where to go to get help. The ongoing “offer” would then offer further support in these core areas (e.g., a short course on managing sleep problems), and other issues that emerge over time and become more relevant later (e.g., transition to adulthood, functional skills for life and work).
In short, the local offer could be “evidence-based”. It could be evidence-based in the sense that we know quite a lot about the vulnerabilities disabled children and their families face and how these change from the early years to young adulthood. The local offer ought to directly address these needs. So, an underlying framework/model should guide the local offer (in an ideal world). Such an offer might well be quite focused – might be quite a short list. Less (quality and targeted stuff) may mean more…

@sickofsocalledexperts

Why does Prof Hastings think other influential university education establishments eg University of Birmingham and CRAE in the London Institute of Education have set their faces so firmly against ABA? Even the NAS don't seem to like it much. Why are we so different from the US in this respect ?

Returning to some earlier points, sickofsocalledexperts, I’m not convinced that university education folks in the UK are against ABA per se or against how it has been represented, or against some of those that they have seen representing ABA. Anti-ABA folks do trot out many of the usual criticisms of ABA as a rationale for a less-than-positive stance. Many of their objections are grounded in direct experience of poor quality ABA practice, some are repeating other people’s criticisms, and others still have not informed themselves properly about what ABA actually is (even making the error that they think ABA is an intervention for autism). Apologies again for directly you elsewhere, but I’ve tried to capture much of this in my ABA blog.
If you’re sickofsocalledexperts, then I’m sick of people apparently with the same ultimate interest (the quality of life and well-being of children with autism, and other disabilities, and their families) fighting each other. Surely, we agree on more than we disagree about. Arguing about one model versus another is sucking energy that we as a collective of stakeholders can’t afford to waste. Let’s focus instead on outcomes for children and their families.
By the way, I don’t think we’re that different in the UK to the USA. I have seen similar in-country disagreements about ABA/autism in pretty much every Western country I’ve visited so far.

@bochead

Why does the UK establishment refuse to address the needs of the child with sensory issues?

I'm only just beginning to realise what a large minority of the overall school population this is, and how poor provision is nationwide. IE's experience is replicated in so many families up and down the land, and must cost the country a fortune as these children could become productive members of society, but instead are doomed to become too traumatised to function in too many cases. In layman's terms too many are "PSTD" victims before they've even hit their teens.

Is it really so hard to provide a mainstream academic curriculum, in small class sizes that incorporates a subdued sensory environment? My mother attended an institution like this - a small rural village school during WW2.

Wouldn't this be far more cost effective and efficient than the current dogma driven insistence on forcing these children into ever larger, more overwhelming mainstream environments? Even the ABA community does not really seem to address this.

With the push towards the super primary of 1000+ pupils the issue of where to place these pupils is going to become ever more urgent, with more and more children becoming an unwilling part of this miserable minority. The net this minority encompasses a ranges of formal neurodevelopmental diagnoses that goes beyond just those with ASD.

That question is quite a surprise to me bochead. I guess I originally read this as about autism only. Sensory issues are clearly on the agenda for autism and in special schools, especially autism specialised schools. I spend a fair bit of time with folks from these settings, and the conversation is often dominated by “sensory issues” rather than being something people refuse to address.
If I have understood you correctly though, the question is broader. There may be many children with sensory sensitivities. Absolutely, and this is clearly not unique to autism. What follows, I think is also my response to ouryve who raised some similar issues.
Doesn’t it come down to what is generally a conducive environment for learning (a healthy, well-designed, physical environment)? If we attended to that issue more broadly in designing our schools and classrooms then I’d suggest there would be many fewer challenges for children with sensory sensitivities.
I’d also want to be careful about assuming children with autism with sensory issues have similar needs to each other. In my experience, the sensory issues can vary quite widely. Practically, designing educational environments that reduce problems for every possible sensory need might be impossible. This raises two further issues for me about sensory issues. First, children can be taught skills for coping with their sensory experiences and sensitivities in a way that maximises the chances of them benefitting more broadly from inclusion in society. Simply avoiding aversive experiences is a sure-fire way to store up lots of problems over time. Second, I wonder if current understandings of sensory experiences are too rigid. We seem to assume that these are perhaps rather fixed. However, I’d like to see research with individual children about what turns these sensory reactions up and down. To use a more general analogy, we all respond very differently to other people and to some sensory experiences when we are tired. What are the equivalents of tiredness for the child with autism – the things that moderate the intensity of their sensory experiences? It may be these that we can do something about.

@OhSoVintage

What your advice be with a 7 1/2 year old girl that have many AS related issues outside of school both at home and at out of school clubs that can be quite extreme and effect the whole family yet at school presents very little issues at all (she did at nursery but unfortunately that teacher has left!) We are in the process of having her issues looked into but I have a real fear that it will be dismissed as soon as they assess her in school. She is at a very small school and attended the nursery and cheche there so has known friends and teachers since she was a tiny baby and feels very secure within that enviroment which is great but I know this wouldn't be the case if we had to change school because of how she is at clubs. Is there anything I can do to help with the assessment so that I don't just look like an over protective mother. I want it to be picked up early so we know what we are dealing with.

OhSoVintage I think you have pretty much answered your own question. So, you have already pointed out that this young girl presents/behaves quite differently in different environments. This is no surprise. The key question is then what is different about the environments you mention (home, school, out-of-school clubs). You talk about some possible things – feeling secure, knowing people well. However, one would imagine that would also apply to home. In any assessment, perhaps it would be good to focus on just what you have observed clearly in your question – behaviour is very different in different settings and so the clue is likely to be in that?

@StarlightMcKingsThree

Hi Richard,

Do you have any suggestions or advice for Governors of mainstream schools with a SEN remit?

Thanks for this one Starlight. One point I’d come back to here is that getting it right for the kids with SEN will ensure that the school is getting things right for all children. The skills teachers need to get good outcomes for kids with SEN are just the same skills that will enable them to teach all kids effectively. So, I’d make SEN the make-or-break agenda for the school. SEN isn’t a separate agenda issue. Whilst it remains a side issue or whilst the kids with SEN are still performing poorly, the school and the teaching ain’t “good”.
If that sounds a bit too much like a pipedream, how about using a SEN lens for everything that happens in the school? Constantly ask: How will this work for the kids with SEN? How will this help kids with SEN? And don’t accept changes in the school that clearly aren’t associated with good answers to these questions.

@Upandatem

I really don't like the dismissal of anxiety and behavioural problems as all being the 'fault' of the child, or that of a parent who is presumed to have enabled those responses.

The responses of a disordered and confused brain that is struggling to process the world is rational and real, we all have to change to help these kids, not just expect them to do all the work on top of all the difficulties they already have.

Will be really interested in the webchat, thanks for agreeing to do this.

Upandatem, you’ve really hit something here that is at the heart of my perspective on things. I would agree that brain processes likely make some children vulnerable to respond in certain ways. However, it is the environment that makes these behaviours more or less likely to occur. I do think that there is more danger of blaming the child if we blame their brain or their disorder. However, it is the environment around children that we should look at and that we should seek to change to help them with their difficulties. This is the direct corollary of the fact that if the child is not learning, we are not teaching (and that’s the problem, not the child).
So, I’m with you on being frustrated with those who mis-attribute problems to the child rather than to the environment.
I almost avoided responding to your point about parents. However, I think I should pick this up. Research evidence is very clear (great research designs, with data measured over time so we can see how things develop) that the context of the parent-child relationship is related to psychological problems in children with autism and other disabilities. Parents experiencing high levels of stress, and certain parent behaviours (e.g., harsh parenting, perhaps showing less warmth to the child) do predict increases in problems for children over time. We can’t duck that issue. At the same time, it is completely inappropriate to somehow blame the parents/family. The research evidence does not support this. For example, the challenges of raising a disabled child (especially their behaviour problems) also feed into what parents do and how stressed they are. Parents stress their children, and children stress their parents. There is a bi-directional influence (and this hopefully makes sense to all parents, if you think about it). Thus, the issue is how to break that cycle of two-way influence – that will benefit the child and the parent! Parents are also under stress because of factors outside of the child: increased poverty and lower levels of employment in families of disabled children, for example. Dealing with trying to get supports and services for the child is also another area of significant stress for parents.
I hope I’ve been able to be really clear above, but let me re-state: I agree, none of this is the fault of the child OR the parent. However, the solution is often partly with supporting the parents/family because ensuring that the family is as “healthy” as possible helps the child – no doubt. It might be difficult for professionals to communicate this subtlety.

@StarlightMcKingsThree

Oooh, another (hope I'm allowed).

Where would I start in learning about the potential of Mindfulness for my 7yr old with moderate functioning ASD, and then giving him the skills?

How do you teach it?

Starlight question 3 eh? Aren’t you meant to have only one? Most folks I know who teach and research mindfulness would say start with yourself. Go on an eight week mindfulness course in your local area if you can. Mark Williams’ book Finding Peace in a Frantic World is also excellent and you can run through this on your own with the CD of exercises (buy the hard copy book so you get the CD). Practice mindfulness yourself first. This would likely change the way you parent, hopefully help to make you calmer, and your child would hopefully pick up on that. You will probably also work out simple exercise that you can also teach to your child by doing it yourself.
With your child, it probably depends what you’d be teaching them for. I don’t know the kids’ literature so well for mindfulness. There may be some useful things through the mindfulness in schools project. In addition, once you were into it then looking into Nirbhay Singh’s Soles of the Feet exercise might be useful as he’s published quite a lot using that with young people and adults with autism as well as those with moderate-mild intellectual disability.

@Thomasthetank

Our two year old has many signs of possible autism including speech regression, babbling instead of words, lack of pointing, no response to name or others pointing, poor understanding of simple everyday speech and constant meltdowns. He also is felt to have sensory issues after being observed at a toddler group for autistic children.He has an initial appointment with a community paediatrician in early May to discuss assessment along with referrals to portage and SALT.

Which interventions (carried out by professionals and ourselves) do you feel are most effective for a two year old on the autistic spectrum?

I’d take a look at the NICE guidelines on autism in children, and also the NICE guidelines on diagnosis, so you know what you should be getting in terms of the diagnostic process. These documents are rather large but they are freely available to anyone to download from the NICE website and have summary versions/sections. NICE guidance should be influencing what services offer by way of intervention approaches. So, it is always worth being armed with these documents when meeting with professionals.
Approaches that are effective with young children are often based on behavioural teaching strategies but have different foci in terms of what therapists are trying to teach to the child. Most are focused on building communication, play and social skills. You’ll see people talk about “ABA” (but please ignore anyone who suggests ABA as a way to potentially cure autism – it is a great way to build skills), the Early Start Denver Model, and also interventions like the PACT communication-focused intervention may be available in the UK. If the core interest was in communication, especially functional communication, then it would be good to look into PECS. The Research Autism website gives a reasonable overview of the evidence for intervention approaches and explains briefly what they are. It is also helpful as it is clear about some interventions that could be harmful, and so you’d want to avoid. Good luck.

@bialystockandbloom

I hope I can ask another question too:

How do you think the school system should ideally be set up to ensure children with autism are best taught? Do you think the current system of mainstream (which might accommodate the child but not necessarily do much in the way of teaching non-academic skills) and special schools (which by nature means that children with autism are not integrated with mainstream peers, but have a curriculum which is more tailored) is the best model? Are you in favour of this system, or would you prefer to have a single system - and how would you best support the children with autism in a mainstream setting?

All in an ideal world, obviously

Sorry, several questions rolled into one, but hope it's coherent

bialystockandbloom please see my responses to earlier questions in this chat sequence – have tried to answer this in terms of making the education system work for all children. I think this is possible, but it is a long term vision.

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.

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.