Webchat with Professor Richard Hastings

Following on from a suggestion on this thread, we invited parents of children with special needs to put their questions and concerns to a researcher in this area, Professor Richard Hastings.

Professor Richard Hastings

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 particular interests in educational intervention, mental health and behaviour problems in children and adolescents with learning disabilities or autism, and the experiences of those children's families. Richard is working to make research findings and evidence available to parents, including through his blog.

All views expressed are the professor's own and not those of his employer (University of Warwick) or any organisation with which he has a close professional relationship: Mencap (Trustee), Sibs (Research Advisor), Ambitious about Autism (Expert External Advisor), and Cerebra (they fund his Chair in Family Research at Warwick). He also emphasizes that he is not a clinician/practitioner, but "will do [his] best to offer some response to the practical questions posed".

Applied behaviour analysis (ABA) | Diagnosis | How to help | Improving the school experience for children with SEN | Medication | Mindfulness | Other

 

Applied behaviour analysis (ABA)

This is My Child | MumsnetRead more about This is My Child: Mumsnet's myth-busting and awareness-raising campaign that aims to support parents of children with additional needs, and inform others in order to facilitate empathy and understanding.

Q. bialystockandbloom: 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?

A. Richard: I'd argue that there is no reason why 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 [early intensive behavioural intervention] or IBI) for children with autism. This is what people tend to think of when they hear 'ABA' and 'autism'. However, there is no good evidence that intensity has to be high for outcomes to be good. Teach a child well, they will learn. 

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 good news is that we've just started some research on 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. 


applied_behaviour_analysisQ. AgnesDiPesto: Why do you think there is so much resistance to changing service models in the 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 the age of two (although that was the last place my two-year-old wanted to be after a massive autistic regression). What evidence base is there that this is better than home programmes? Soon LAs [local authorities] 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 [treatment and education of autistic and related communication handicapped children] methods in schools although there is no research base for this and little for the full special school version. And most recently I read about the Justice4LB campaign where a young person was taken away from their family for alleged assessment for challenging behaviour/anxiety and died, when for the same cost 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 already have (schools, nurseries, units, hospitals) and start designing services to fit our young people (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 don't really see a lot of common sense in autism/LD [learning disability] provision, let alone research. How do we change this?


A. Richard: 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 – so an evidence-based approach. All learning would then be individualised – where the child is at would define where to go 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.

"Solve education generally, and we'll solve the issues for children with special needs."

If this were 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. 

The problem is that our education system is not like this. At present we may need to focus education for some children in their home environment or in specialised settings (eg 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.


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 present, the solution 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 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 [special educational needs]. 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.


Q. inappropriatelyemployed: My experience with ABA to date for a 10/11-year-old with Asperger's [Asperger's syndrome/AS] has been very disappointing. Those engaged with drawing up programmes were very experienced and trained by leading organisations (or based at universities). But they 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 at any point during the six-hour visit. 

Neither consultant seemed 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, but 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 2010 of making reasonable adjustments.

My son's school, which was very welcoming to the idea of ABA (and had paid for a non-verbal, younger child to have it), was very shocked by the scant regard paid to the 'whole child'. We agreed 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 Asperger's sufferer 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 [post traumatic stress disorder].

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?


A. Richard: 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.

"ABA is all about changing the environment to promote positive learning for a child."

My view is that any ABA practitioner should be working on what they have been asked 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.


Q. StarlightMcKingsThree: How can anyone introduce or talk about ABA to professionals without getting the instant cold shoulder and being 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 been through three sets of LA departments and eight schools.


A. Richard: 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 fingertips 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.


Q. sickofsocalledexperts: Why do you think other influential university education establishments eg University of Birmingham and CRAE [Centre for Research in Autism and Education] in the London Institute of Education have set their faces so firmly against ABA? Even the NAS [National Austistic Society] don't seem to like it much. Why are we so different from the US in this respect?


A. Richard: 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 folk do trot out many of the usual criticisms of ABA as a rationale for a less than positive stance.

"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."

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). 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. 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.


Q. AgnesDiPesto: What research is there to support interventions for children once they get past the EIBI stage? We've had an ABA programme for my son from the age of three and it's great, still achieving steady progress and working well. It's become a very flexible, creative, real life based programme and fits well into mainstream school.

But my son is seven and a half now, and he's got classic autism: severe speech delay, little social interest, high repetitive behaviours, very passive and unmotivated (outside of ABA). He still very much needs the framework and expertise of an autism-specific approach and will for the foreseeable future. He's too bright for our local special school (he's above average ability in non-language based learning). With the support of ABA he is really exceeding expectations given the severity of his autism. What research is there we can point to, to stop the ABA from being removed too soon? Or do we just have to rely on his individual progress? There is lots said about children who do amazingly and those with poorer outcomes, but what about the bunch in the middle who just plod along steadily? I worry if we end up back at tribunal there isn't much of an evidence base to point to to say these are the middle group who need long term autism teaching but will hopefully get there in the end.

There is a sense ABA should be for a few years at most then that's it; you should have transitioned off it. But my son could not be in mainstream school without the support he has (and the 1:1 work out of school that makes school a success) and there isn't a viable special school option around here that would match our success (or expectations).


A. Richard: Let's start by quickly revisiting this issue that ABA is the application of learning theory to problems of social significance, and EIBI is a comprehensive curriculum using ABA teaching methods designed to be delivered to children with autism as an early intervention. EIBI, as you say, is designed to be used like any early intervention model – quite intensively for a time (up to a small number of years at most). My view is that EIBI was never designed to be used as children get older and enter adolescence and beyond.

However, this doesn't help with the question of what next? Many local authorities in the UK have supported EIBI programmes but then not given thought to what would be next for these children – what ABA environment the children would then move on to. So far, there are a small number of solutions. There are several ABA schools that take children from the early years throughout their schooling. So, they aren't delivering EIBI forever but have had to work out how to design an ABA-based education that supports children throughout their schooling. For example, secondary age young people might be working on functional life and work skills in particular and transitioning then into further education or work. 

ABA schools answer your question in some ways – these schools provide an ABA-consistent full education. There are few examples so far of people publishing outcomes from these schools in the UK. We're currently working on just this issue focused on outcomes for children at TreeHouse School in London. However, there is some 'evidence' there showing how ABA can inform a child's education beyond EIBI.

Another way to answer your question is to look at the National Standards Project in the USA. A detailed review of educational interventions for children and young people with autism shows there is evidence that they work with older children too. You can download the evidence review for free and also the accompanying handbook for educators about how to apply the evidence in practice. What this shows is that ABA-based methods of course don't stop being relevant to children and young people with autism once EIBI might be completed. ABA methods are based on how we all learn, so ABA is clearly relevant to older children with autism just as it is to ALL children.

I'm hoping that your son is now on an ABA programme that has grown with him – that is focusing now on learning that is more relevant to his current age, and so looks quite different to the programme that was in place as EIBI early on.

What you identify though is a real problem. The UK education system needs to crack this issue and actually it is a more general one. How do we continue to support all children who receive some sort of early intervention? I would imagine most will still need some specialised support throughout their schooling (and monitoring to check that they are not going off-track) to ensure that the outcomes from the early investment are maintained. We need research on how services can be designed to achieve this.


Q. mandalaybay: What is your view on schools and local education authorities who are refusing to use evidence based interventions with children with autism? Or those who ignore evidence based interventions and choose 'eclectic' approaches instead?


A. Richard: I do sense a shift in pressure on schools to use evidence more widely, and not just in the field of autism. Take a look at the Education Endowment Fund website, for example. There is, however, a narrative of choice and individualisation that I think is being used inappropriately to support eclecticism. There is also no evidence, as far as I'm aware, to suggest that eclectic approaches are better than a focused, theory-informed, and tested intervention approach for children with autism.

"Many people fail to see that ABA is the application of the science of learning to solving problems of social significance – it is not a single and very focused, prescriptive model."

Educationalists and others, including parents and researchers, often say that every child is different and so no one intervention approach is suitable for every child with autism. I agree with this, but also disagree. It is true I think that intervention for one child ought to look at least slightly different for another, since they will have different needs, will learn at different rates, and they and their families and schools may have different priorities.

However, many intervention approaches are quite flexible just like this. All interventions that are delivered 1-to-1, for example, are likely to be quite child-focused and look slightly different for each child. ABA-based interventions are a good example, and in my view offer the most flexibility to deal with a wide range of needs. In this case, EVERY child could receive an ABA intervention without a problem and all could achieve the individualised outcomes of importance to that child. Many people fail to see that ABA is the application of the science of learning to solving problems of social significance – it is not a single and very focused, prescriptive model. Some practitioners might apply it like that, and educationalists and parents might see this and assume that is what ABA is.

I think there is a mistaken belief that ALL intervention approaches are too focused only on one or a small number of areas of a child's needs. Several approaches are much more flexible than that. If you think interventions are rather too focused, then it may be logical to conclude that we must provide a wide range of choice. I would argue instead that the choice provided needs to be limited to approaches that are more comprehensive in coverage, flexible in terms of dealing with a child's needs, and evidence-based. If we reduced choice in this way, perhaps we could ensure the availability of evidence-based interventions more widely.

I also prefer to think about interventions within a coherent framework, and ABA is a good example here. It focuses on the cause of problems (with learning or behaviour) in the environment rather than the child, uses science-derived teaching methods, and incorporates ongoing data collection about whether an intervention is working. This over-arching framework can be quite inclusive in terms of intervention methods. The focus should be on what it is you are trying to achieve. For example, many of the ABA practitioners I know will use Social Stories to help with behaviour in social situations, or use a TEACCH approach to help a child who needs to understand their routine and transitions. People may even use mindfulness to help a young person to regulate their emotional responses.

Q. PipinJo: What is being done at UK national level to ensure that ABA is made mandatory for a child with ASD [autism spectrum disorder] to ensure they have a good start of developing skills needed to function and learn in the best way possible? It is compulsory in Ireland for under-5s so why isn't the UK following suit? We have the evidence, you wrote a lot of it! What can be done via national professional bodies or by parent-led demand to achieve this basic right for all children to have the best possible start to their most crucial early years?A. Richard: I don't think ABA is compulsory in Ireland. There was what they called a pilot programme of ABA schools for a while that delivered provision on a wider basis.

"It is clear that educational inequalities for disabled children are established very early – so what option is there other than to start early with intervention?"

However, that pilot programme was stopped and now just about all these schools have moved to a model where teachers deliver the education. 

It depends what you mean by mandatory/compulsory. I do think that parents of children with autism and other developmental disabilities ought to have a right to effective early intervention for their child. This would likely include EIBI, but may include other (often related) approaches. Although implementing this is likely to help children early on, I would expect that the education system also needs to change as a whole if the gains of early intervention are to be maintained throughout life for disabled children.We need a system that supports all children in learning and maintaining their skills.

Parents have a central role to play, as do professional organisations and also third sector organisations (disability charities). Together, a coalition could be built with considerable power and influence. As you say, we do have evidence of effectiveness for some approaches. In addition, it is clear that educational inequalities for disabled children are established very early – so what option is there other than to start early with intervention? It makes no sense to wait.

The research priorities then become how we provide a system that supports the gains in early intervention and what educational service delivery models children need to transition into. There is a significant lack of evidence on questions like these, whilst we spend millions on finding the genetic causes of disabilities like autism. The priorities need to shift.


Q. Brucietheshark: Now that you are in the area, is there anything ABA-related that you and your team are planning to work on? What research is in the pipeline?

Did you know that Warwickshire as a county are currently being very helpful (well certainly in our area) to families setting up ABA home programmes? Is there any way we can share this (what I think of as) good practice with other regions and authorities? I have no idea how this all fits in with establishing local offers etc. Do you or might you have any involvement with this at all?

Finally and most importantly, do you yet have a team of, ideally part-time, eager researchers who have Fridays free and are interested in gaining experience as an ABA tutor?

A. Richard: By all means drop me an email: R.Hastings@warwick.ac.uk. I've started to make connections locally and heard some positive stuff about Warwickshire from elsewhere. Would be great to build on this and to make connections between the local authority and all the research we're doing around autism and intellectual disability.

We're planning to apply for funding to research some behavioural interventions that focus on teaching early reading skills and also reading comprehension skills (using an online reading programme), plus early numeracy skills (using an adapted mainstream curriculum approach). Pilot work has been really encouraging and we're pleased to see children (and adolescents too) with autism/ID [intellectual disability] who never learned to read being able to do so, and developing numeracy skills in children who it was thought would never learn (after years of trying). Problem is it takes ages to get funding sorted and projects up and running, but we hope to run these projects at some point soon. 

I don't yet have any connections to teaching students in the university so have no way of encouraging them to get involved with being ABA tutors and similar roles. It may be worth contacting the Psychology department at Warwick with an advertisement though if you haven't tried that already.

You can download for free a research report I have just done for Sibs [charity for siblings of children with autism]. The underlying message is that there may be less evidence of problems for siblings than parents might think, given how worried they can be about siblings. There probably is a small minority of siblings who are affected by having a disabled brother or sister, and we need to know how to support them. However, it looks like the vast majority of siblings are fine. Sibs is a very useful charity, btw, for information and advice about and for siblings.


Q. TheSporkforeatingkyriarchy: As ABA has been around for decades, it is surprising that so little of the accessible information discusses the results and opinions of autistic adults, many that have previously gone through it. I find it odd that it's a struggle to find inclusion within academic discourse and the best location seems to be personal blogs of autistic adults and youtube channels like 'Ask an Autistic'.

Surely the end result is how it affects adult life? Even beyond ABA, autism is often portrayed and discussed in terms of children and their carers. Young adults and older adults who have dealt with autism for decades barely get a mention in the public discussion around autism. In disabled adult forums I frequent, this lack of portrayal and inclusion of adults with their condition left many to say that as children they feared they would disappear or die because they saw no adult versions of themselves. This obviously needs to be improved with greater inclusion and better portrayals and often desired mentoring. And in a recent conversation about ABA on said forum, we've yet to have one positive response from an adult that has gone through it.

Has it changed so much in the last decade that their opinions are out of date or has something been done to prevent the issues that came with problematic ABA providers? Because as a neurotypical [not on autism spectrum] parent, with children on all sides, I am very uncomfortable with an idea or technique being held up as the Holy Grail when those who have gone through it seem to be so adamantly against it, especially as I've already had one child damaged by an over-zealous therapist that had an idea of what he should do now rather than what he actually wanted help with (it took months to help my child recover from this). Surely that is one of the most important pieces of evidence, the lifetime results, which oddly seem to be missing in most of the conversations around this.

A. Richard: Please do take a look at my blog, and especially perhaps this post re broader criticisms of ABA.

"We know very little in research about autistic adults' retrospective accounts of the interventions they were exposed to as children. Significantly, research has not focused either on what children think about their experiences."

I could have written the same points you have about any autism intervention approach. Where are the autistic adults talking about it? I would also argue that what autistic adults who are presenting themselves as anti-ABA are talking about is actually poor intervention practice, and this is not specific to ABA. One could speculate that EIBI has been around for a longer time than other interventions so we're bound to see the complaints from adults now being primarily about ABA rather than other practices.

If you want to see a positive video from an autistic adult, then take a look at this one.

However, the most significant implication of your comments for me is that we do indeed know very little in research about autistic adults' retrospective accounts of the interventions they were exposed to as children. Significantly, research has not focused either on what children think about their experiences. I very much agree that these perspectives are crucial to collect and should be a part of the bigger picture of evidence that is brought together to establish whether an approach can be considered 'evidence-based'.


Q. RaRaTheNoisyLion: I'm currently studying the course 'Understanding Autism' with the Open University. A question in the course chatroom was raised as to why their 'Intervention' chapter didn't mention ABA, only Lovaas [behavioural intervention program developed by psychology professor Dr Ivar Lovaas], with an evaluation that spoke of an intense 40 hours of 1:1 and punishments.

There were two broad answers:

1. ABA is not included because the evidence base for it as a whole cannot be stated, as it is an umbrella term for a whole range of approaches, some with good evidence base and some without.

2. ABA is a philosophy about intervention which some do not find appealing, as it is 'adult directed' and carries the risk that the 'teacher' would decide what behaviour is desirable for the child to achieve, whether or not it is something the child wants to achieve.

I would be interested in how much you agree with these points, and what effect you think there might be for the children who these students are likely to regularly engage with from NOT including ABA in these types of courses.

A. Richard: Indeed, as mentioned in several replies so far, ABA is an applied science and not a specific intervention. It makes no sense to ask whether ABA works – this is like asking if physics or chemistry work! So, it is an umbrella term in some ways. I'd strongly disagree with the adult directed comment though. ABA practitioners often say that the child is always right.

I have written a series of blogs on autism and evidence that are intended to build up people's understanding of ABA and autism and to what extent it may be an evidence-based approach. The fifth in the series deals in detail with criticisms of ABA but I hope you and your fellow students will be interested in reading the whole series and then debating the issues with each other.

To answer the final part of your question, I am frustrated by educators in universities and also professionals who talk about ABA but actually don't really know what they are talking about. I don't blame these folks – personally I think behavioural psychologists have been poor at communicating and have been known to behave in ways and say things that put people's backs up.

 

Q. 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 without philosophy."

A. Richard: Ask them to define what they mean by intrinsic motivation. This seems to translate as 'let's 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:

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.


Diagnosis

diagnosis

Q. OhSoVintage: What's your advice regarding a seven and a half-year-old girl with many AS related issues outside of school both at home and at out of school clubs that can be quite extreme and affect the whole family, yet at school she presents very little issues at all? 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 crèche there so has known friends and teachers since she was a tiny baby and feels very secure within that environment. I know this wouldn't be the case if we had to change school. 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.

A. Richard: I think you have pretty much answered your own question. You have already pointed out that this young girl presents/behaves quite differently in different environments. This is no surprise. The key question then is what is different about the environments you mention. 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.

Q. rainbowqueen: 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.

"Diagnosis, and the label then attached to someone as a result, can have very powerful effects ... it may help identify a person's needs more clearly, it can also prevent misinterpretation of some behaviour, and services and supports can be targeted more easily."

A. Richard: Diagnosis, and the label then attached to someone as a result, can have very powerful effects. Decades of psychological research show 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 misinterpretation 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.

Q. TheLightPassenger: I have concerns about the suitability of enormous secondary schools for those with special needs. My child has slipped through the net in terms of diagnosis - only ever diagnosis was language delay with subtle social communication difficulties - do I correctly interpret this as meaning autistic traits but insufficient for an ASD [Autistic spectrum disorder] diagnosis?

How best can I protect his mental health on transition to secondary, given with this lack of diagnosis I feel I have to rely on the kindness of the teaching staff and my own best efforts? He is under no professionals as his language improved to within normal range some years ago, and he presents as very bright but very quirky and a touch anxious.

A. Richard: I'm not sure if the diagnostic process you went through ended up saying clearly that there were autistic traits for special needs (SN). Diagnosis is not a precise process though. In fact, research on diagnosis also shows wide variations on what labels are applied to children with very similar profiles depending on the diagnostic centre that they attend. 

In terms of transition to secondary school, even though SN is not under any professionals at present I'd hope you could work with the secondary school on some kind of plan. Explaining his needs, and working out how you and the school can agree some plans would be good. They may have experience of the transition process with young people with autism already, or can talk to other secondary schools that have. So, helping your child be familiar with the new environment is likely to be important. He may also need a way to let his teachers know if he isn't coping and an agreed response when this happens (eg being able to work in a quiet room for a while). Directly strengthening his peer relationships and support might be good too. Basically, I'd really encourage you to work in partnership with the school rather than feel it is up to you to solve.

Q. zzzzz: Do you find the current practice of classifying individuals as HFA [high functioning autism]/AS/LFA [low functioning autism] is helpful in finding the value of different interventions?
If you were going to split the autistic population into sub-diagnoses what criteria would you use and what insight could that give us into intervention/outcome?

A. Richard: I'm not big on diagnostic categories at all and prefer a much more social model approach than a medical model that formalises diagnostic categories. For me, it is the nature of the 'problem' that is most important – for example, functional communication, versus sleep, versus feeding/eating. The key issue is much more about how the external and social environment needs to be changed to make a difference to the problems of interest. That said, it is likely that whether a child with autism also has an intellectual disability is a key factor to consider in working out the particular nature of intervention approaches that might be effective. For example, talking therapies are likely to be adaptable for those with autism without an intellectual disability but may be rather more challenging (or require more considerable adaptation) for those with an intellectual disability.

"We clearly need to know a lot more about autism in the context of intellectual disability and knowing more might lead to some different ways to think about interventions for that group of children."

Sadly, much of the research on children with autism and intervention approaches that may work tends to be focused on those who are higher functioning (ie without intellectual disability). We clearly need to know a lot more about autism in the context of intellectual disability and knowing more might lead to some different ways to think about interventions for that group of children.

Q. Mollyweasley: When symptoms do not show at school, families cannot get the psychological help they desperately need. Professionals (teachers and GP) seem totally unaware that ASD can be situational (ie symptoms don't occur in all settings) or do not see the need to refer a child who gets on very well at school, however serious the consequences on their and their family's mental health is. We have had that struggle and our son was finally diagnosed with Asperger's syndrome after six years of seeking help. Please could you explain on this board that ASD symptoms do not always occur in all settings and suggest what we can all do to make more professionals aware of this situation so that families can get the help they desperately need.

A. Richard: Behaviour problems of various sorts, for all children, are clearly context-dependent. This is actually one of the core aspects of behavioural models to understanding human behaviour – that behaviour is mainly determined by the environment. This environment can be 'internal' – so, we might behave very differently depending on states like depression.

"The revolution in thinking from behavioural psychology is that what happens after is the crucial thing."

However, crucial to doing something about behaviour problems in particular is an understanding of the external and social environment or context. Specifically, to design an intervention approach we have to think about what situations the behaviour tends to occur in and what the typical response to that behaviour is. Understanding behaviour problems is mainly about what the behaviours lead to (what happens after the behaviour occurs), and not what happens before it. 

We're used to thinking that factors that cause our behaviour occur before the behaviour. This happened, and I did this as a result. The revolution in thinking from behavioural psychology is that what happens after is the crucial thing. So, do I gain attention or escape from some difficult demands by engaging in this behaviour? Patterns of behaviour problems also emerge very early in children with autism and intellectual disability – often in the family context. It may then be that these behaviours do not get established in school, but only in the home context or in the context of the relationship with a parent or sibling. Let me be clear that it isn't the family's fault in any way. Instead, the dynamic of the two-way effect of children's behaviour on parents and vice versa can become established in the home over time and is hard to deal with because it is stressful for the child and the family. The same conditions do not occur at school, so it is perfectly possible and quite likely that children behave very differently at home and school. Just thinking about my own teenagers, the cheek we can get from them at home would never occur in school – there they are model pupils!

Q. AlarmOnSnooze: How can parents go about getting better and more effective diagnoses? It took over two years for my first daughter to be diagnosed, and she was as severe as they come when an infant/toddler. Following that, no intervention was forthcoming at all unless we chased and chased forever.

With my second daughter, we have been told at every turn that she is fine, neurotypical, no problems. She was diagnosed with AS last week.

And now with my son - health care has been outsourced to Virgin in my area, and initially I was impressed. From referral to first paediatrician appointment was only three months, and this was with my son being 17 months at point of referral. All good. However, I have just received the result of his referral on for SALT [speech and language therapy]- he has been put on the waiting list, and they are unable to provide a timeframe within 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 earthly use for my son. Otherwise, I can look at the ican [children's communication charity] website. He is now 20 months old, and I have no timescale for when he will be seen at all - a high risk infant, with several diagnosed close family members, with clear speech issues (no discernible speech at all) as well as a couple of other red flags.

So, what can be done by overstretched and time-poor parents to work towards a more efficient diagnosis/service provision? Without, of course, giving up and going private?

A. Richard: 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 support that they need. At present, the former is a clear prerequisite 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).

"Where is the coherent voice that [service providers] can use to guide their work? 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."

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!

Q. cansu: 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 professional 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 neurotypical child would be getting much more help with a feeding issue?

A. Richard: 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 autism. Perhaps we have to start by being clear about what autism is. 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.

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.

Q. OldBeanbagz: Any advice for the mum of a nine-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 (in two 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?

A. Richard: I'd try to get professional help. It sounds rather simplistic and obvious to say this (and it underestimates I'm sure the impact of the problem) but this young man can clearly speak given the right context. Understanding what the key factors are and how to motivate him to speak in a variety of contexts is crucial and as you say it needs sorting before secondary school when he'll need all the communication skills that he can muster to survive in challenging environments.

 

How to help

Q. homework: Howhow_to_help can you help a child who is able to work things out in their head, but when it comes to actually writing things down, just can't seem to get the same information on to paper?

A. Richard: 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? 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?

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

A. Richard: I'd take a look at the NICE [National Institute for Health and Care Excellence] guidelines on autism in children, and also its 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 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."

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 [preschool autism communication trial] communication-focused intervention may be available in the UK. If the core interest is in communication, especially functional communication, then it would be good to look into PECS [picture exchange communication system]. 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, which you'd want to avoid.

Q. AlarmOnSnooze: I'd like to know how I can go about handling anxiety and mental health at both ends of the spectrum.

My first daughter has severe ASD. She is progressing brilliantly, and has far exceeded early (dire, NHS) predictions thanks to her ABA schooling. She is incredibly sociable, and yearns to join in the clubs and activities she sees her younger sister doing. How can I help her accept her limitations (coordination, inability to work with the demands of group activities) while encouraging her to keep trying things? I hate the fact that she cannot do everything she wants to. I cannot imagine how it feels for her.

At the same time my second daughter, with Asperger's, is very high-functioning. She puts enormous pressure on herself to be the best, and sees anything less than perfection as failure.

I worry about their general mental health, and long term happiness, and despite years of pep talks on how everyone is different and everyone has their own goals to reach in their own time, it doesn't seem to be working. My first daughter in particular is not happy a lot of the time, and I don't know how to help her be more content in life.

A. Richard: This is a bit too far from my non-practitioner expertise to be able to offer many practical ideas for your daughters. I'm just sharing some ideas, but I have no practical/clinical training at all. I'm just a parent in this response.

What I might say though is that you are perhaps identifying an area of skill development that you and your first daughter want to focus on at this point in time. So, the development of social skills that can help in the activities in which she wants to participate might be important. Many parents find Social Stories helpful in giving children the structure and support that they need to take into real life situations.

A further issue is then making sure that she experiences success in these situations – breaking down the involvement into smaller steps and succeeding with simpler/earlier steps as you build things up over time. Somehow, things need to be organised (and her skills developed) so that she DOES succeed rather than 'not managing it'.

With your second daughter, this is a common issue for many young people and not just those with AS. I'm biased as I'm positive about the potential of mindfulness, but this might be worth exploring. Mindfulness can help with letting go of that striving and helps us take our thoughts less seriously.

Q. LadyInDisguise: How would you support the oral expression of a child with AS? (ie written expression better than oral, struggles to find the right words, will generally NOT talk as too difficult).

A. Richard: I'm not trained as a practitioner/clinician. Perhaps other Mumsnetters will have some advice on this question. My suggestion would be to directly 'teach' oral expression – to try to increase the child's oral fluency directly. Working on the principle that there is nothing that cannot be taught, then this should be possible. It would help to get some input perhaps from a speech and language therapist to check that there is no underlying speech production difficulty. If the issue is, as it were, bringing words to mind then increasing fluency is perhaps a good focus. Fluent behaviour is fast and accurate (ie with few errors) and this can be built with practice – lots of practice. 

Here's a link to a website about ways to help children develop fluency in key skill areas. Maybe too much detail and the format isn't very attractive either. You could also look online at the Morningside Academy in the USA and the Morningside Press. Mike Beverley's blog page also has some articles he has written for parents and links to other stuff.

Q. COUNTRYANGEL: I would very much like to ask for any guidance and knowledge of autism and adolescence. My eldest son is now 20 years old, and diagnosed with Asperger's. He is studying for his degree from home with the Open University and socialises through the local university student groups.

I also have twins, a boy and a girl, who have just turned 18 years old. They have both been diagnosed as autistic and learning disabled. In addition to the autism and learning disability they both struggle enormously with anxiety and of course lack of capacity.

Rumour says that when on the spectrum, adolescence can start early or late. However there seems to be agreement that it goes on for longer than for mainstream peers. Adolescence is a challenging time for all parents, particularly so with children further hampered by disability and particularly so when that includes social deficits, and limited grasp of the wider picture.

Is there any guidance as to how best to guide our children through this period of time so that they achieve the best outcome as to self-esteem and sense of fulfilment as they mature into adulthood? They will clearly struggle with feeling included and satisfied when the normal avenues of success through work, relationships and family life are highly unlikely to be a reality for them.

Is there a rough guide to the age when someone on the spectrum might feel a contentedness and acceptance of their life?

A. Richard: I agree that too little research and information is focused on adolescence and into adulthood for folks with autism and/or intellectual disability. I'm not familiar with the literature on the adolescence period in autism at all. I could see that a more social definition of adolescence might match with an idea that the period is longer for young people with autism. However, I don't know about relevant evidence.

We did some earlier work on sexuality and intellectual disability that may be of interest to you. I also think that Autism Northern Ireland have run and evaluated some workshops on sexuality and Scottish Autism may be working on this now.

More generally, I can only suggest that you try (as you will probably have done already) looking for resources on the NAS website and also checking out Talk about Autism for some ideas.
Contentedness and acceptance though are very individual things for everybody. So, I very much doubt we'll ever be able to say that there is an age by which those with autism 'get there'.

Q. BumpyGrindy: My friend's four-year-old son is undergoing diagnosis for autism. He can speak but it is mostly echolalia [repetition of words] and he shows no interest in pens or paper but uses a computer and reads/adds up simple things already. His conversational skills are basically not there, and he does not ask for anything ever.

How can my friend help him to use pens and how can we encourage him to talk and make his feelings and thoughts known? He will not ever ask for food or other needs but only mentions lines from books or television... is there hope for him being able to converse?

A. Richard: I think the core of your question is the communication aspect. You're describing problems that are similar for many children with autism and related conditions. The key here I think is the issue of motivating a child to communicate – creating the conditions in which communicating clearly is important to them. This is very well thought-through in the picture exchange communication system (PECS) intervention, which focuses on functional (ie useful) communication. I'm not sure how suitable your friend's son would be for this approach, but it may be worth a look. Research evidence is strong for PECS and your friend could also ask about speech outcomes associated with the implementation of a PECS intervention.

Q. bochead: Do you have any links on articles about the 'learning to learn' skills? Somehow I've successfully unlocked the creative play key in my son's brain via my very amateur home school programme (first hints shown at seven and a half and it's taken until nine and a half 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.

A. Richard: 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.



Improving the school experience for children with SEN

 

improving_the_school_experienceQ. 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. This 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 'PTSD' 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.

A. Richard: I originally read this question 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, and this is clearly not unique to autism. 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 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 benefiting 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.

Q. StarlightMcKingsThree: Do you have any suggestions or advice for governors of mainstream schools with a SEN remit?

A. Richard: 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, and those are just the same skills that will enable them to teach all kids effectively.

"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 isn't 'good'."

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 isn'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 help kids with SEN? And don't accept changes in the school that clearly aren't associated with good answers to these questions.

Q. cris01: Can I ask how far you should push going to school for a bright AS child? My son is 15. He's been to two mainstream high schools, a PRU [pupil referral unit] and is now in a specialist school (which still doesn't have a clue when it comes to sensory issues). He can't cope in any of them and will be 16 in nine months. He won't even go out of the house unless it's quiet.

Should I be trying to push him and extend his comfort zone or stop pushing him as it's causing anxiety and self-harm? He has no paediatrician and CAMHS [child and adolescent mental health services] don't seem to have much in the way of answers.

A. Richard: I'm not a practitioner/clinician. However, the situation you describe is less than ideal and it seems that there is some urgency to get something moving for your son ASAP as school options won't be around for much longer. I'm not sure I'd want to use the term 'pushing'. It would be important for someone to work with you and your son to look at what the priorities are over the next two to three years in preparing him for the transition out of school, and then directly preparing/teaching your son the skills he'll need to achieve the outcomes you all want. There should be an annual review process at his current school that could focus on just the questions you are raising and how to develop some solutions.

 

Medication

medicationQ. Upandatem: Do you see a role for medication in children with autism? I know Temple Grandin [bestselling author and autistic activist] speaks quite highly of medication and says that if we called it anti-fear medication instead of anti-anxiety or anti-depression medication, it would get a much more positive response.

A. Richard: I very much dislike the use of medication for any children when the focus is problems of a psychological nature. I've never been in the position as a parent that I've been so desperate for some change that I've had to consider medication, so I know my views haven't been seriously challenged in that respect.

I've also been interested to see that the placebo effect (positive response, but to a sugar pill in a drug trial) can be stronger in children and young people with autism. 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.

Q. cansu: What are your views on medication as a means of calming anxiety and obsessive behaviour in children or adults with autism? What kind of research is out there? It doesn't seem to be something practitioners offer. Is this due to lack of research, lack of suitable effective treatments or some other reason?


A. Richard: I have an overall aversion to the use of medication despite the evidence that may be there - we're all human after all! Anyway, there were detailed reviews of the evidence for medical intervention in autism in the NICE guidelines for children and adults. Consensus guidelines are also included, written by an expert panel. There is also some info for the public stuff with each guideline. Again, services (health and social care) ought to be offering support to children and adults with autism following the recommendations in these guidelines. If you can get your head around them, the documents should help to empower parents to know what they should get.
 

Mindfulness

 

mindfulnessQ. StarlightMcKingsThree: Where would I start in learning about the potential of mindfulness for my seven-year-old with moderate functioning ASD, and then giving him the skills?


A. Richard: Most folks I know who teach and research mindfulness would tell you to 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 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 exercises 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're 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.

Q. LPT123: 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 five or ten-minute guided meditations with him three 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.


A. Richard: 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.

"Parents need some tools that can help with their own well-being and also give a different perspective on their relationship with their child. Mindfulness seems to be great for both."

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. 

Q. Upandatem: I want ABA to go along with medication where necessary, and SALT and CBT and OT, all of these things, they must all work together to help the child. 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 my first son 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.

A. Richard: 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 and also I have found Mark Williams' book, 'Mindfulness: a practical guide to finding peace in a frantic world', really helpful.

 

Other

profhastings_otherQ. Redoubtable: Working memory in children who are high functioning with regard to learning, eg children with ASD, DCD - can it be improved and what strategies do you recommend?

A. Richard: I hope you'd agree with me 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.

 

Q. mymatemax: How do you see the new Children and Families Act 2014, local offers and EHC [education, health and care] plans improving things for children with learning disabilities/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?

"It is important that we consider the whole child. 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."

A. Richard: I'm sceptical, to be honest. I do think that there are some good ideas within the new Bill. It is important that we consider the whole child. 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 deliver all aspects of the new plans, services in the UK are a long way from being coherent around the child and family. There are so many different services, professionals, and local variations, that I'd worry that large amounts of resources will be spent on the coordination 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 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 risk areas we know about for children with special educational needs/disabilities and their families: communication/language, sleep, feeding/eating, behaviour problems, advocacy skills for parents, and 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 (eg a short course on managing sleep problems), and other issues that emerge over time and become more relevant later (eg transition to adulthood, functional skills for life and work).

In short, the local offer 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 may mean more (quality and targeted stuff).

 

Q. 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.

A. Richard: This 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).

"It is the environment around children that we should look at and that we should seek to change to help them with their difficulties."

So, I'm with you on being frustrated with those who attribute problems to the child rather than to the environment.

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 (eg 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 support 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 reiterate: 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.



Q. SomewhatSilly: What would you do if your two or three-year-old was diagnosed with autism today?

A. Richard: Primarily with my Dad hat on – I'd like to think that I'd do what I'd do for any of my children. So, I would want to have the same expectations, wishes, and hopes for this child as for all my children. Of course, I know that this would likely be challenging. Like any parent though, I would do all I could to make sure my child did as well as they could. I'd draw on all my resources and connections to make this happen, and I'd fight hard without giving an inch.

Exactly what I'd do would depend on the child and their needs, but that's the context I think in which we'd be parents.

 

Q. WireCat: My son will be five in April. He's autistic with global delay and a few other problems. He has very little speech. I have to fight for EVERYTHING. It's an utter nightmare. Are the powers that be told to make everything as difficult as possible? A person weaker than me would have given up long ago.

"Many parents say that the stresses of raising a disabled child are mainly about dealing with services and not about their child. Basically, this is the core of what needs fixing."

A. Richard: I'm sure services and professionals are not told to be as difficult as possible! However, you describe very similar experiences to many parents we have talked to as a part of research studies. Many parents say that the stresses of raising a disabled child are mainly about dealing with services and not about their child. I don't know what to say. Basically, this is the core of what needs fixing. Some of the motivation behind the new Bill is to address this experience and I really hope it starts to make a difference.

Parents who don't give up change systems though, so I hope you'll keep going. If you're facing a particular problem with services at the moment, you might want to look at the Cerebra pro-bono legal help scheme.

 

Q. StarlightMcKingsThree: What question would you most like us to ask (that hasn't been) and what's the answer?

A. Richard: I'd have been interested to see parents asking about themselves and their own well-being. Especially perhaps whether it is inevitable with a child with autism or intellectual disability in the family that parents will become significantly stressed. In answer, I'd be saying that the best designed research studies we have suggest that parents are much more likely to experience significant stress levels or mental health problems themselves. However, we're also finding in research that parents of children with SEN/disability report similar levels of positive experiences and outcomes. I think this is fascinating. See a little more detail on this on my blogs on family research here and here.

 

Q. ancientbuchanan: Have you any words of wisdom about how to improve interactions between AS adults (parents, teachers) and AS children/ teens?

A. Richard: I haven't seen any research on this at all. Gives me an idea for a research project though, thanks! Not sure I have any ideas beyond what I'd think about for any adult-child relationships and especially parent-child relationships. So, people have to spend time with each other. This sounds obvious, but we're often really poor at it. If you spend time together, especially on something you both enjoy, then you're exposed to contact with another person and this is good for developing more positive interactions. 



Q. oakmouse: 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?

A. Richard: You're right to say 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 (ie it is defined functionally, but the effect it has) we can't tell what might be punishing to a child at 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. 

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.

 

Q. Levantine: I had got so used to thinking about triggers for my son 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 do you start to undo those patterns of behaviour at home without massive meltdowns?

A. Richard: The starting point is to gather some data. All I mean by that can be as simple as an ABC chart. Each time a target problem behaviour occurs, record in as much detail as you can the context and what happened just before the behaviour occurred (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 what, what happened to the child etc. It can also be worth completing a Scatterplot (shown in this original research paper). 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.

 

Q. LottieJenkins: Why has it taken so long for some work to be done to help deaf and autistic children? I have been campaigning for many years and only now is a DVD coming out. In my experience it has been:

Your child is deaf - Go to the NDCS [National Deaf Children's Society]
Your child is autistic - Go the NAS [National Autistic Society]
Your child is deaf and autistic - Sorry can't help.

My son is nearly 18. He was diagnosed as deaf at two. 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.

A. Richard: 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 (eg who are deaf, have an 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, which 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.

 

Q. cargotrousers: I have a son with Asperger's syndrome. We are stuck in the 'do we have another child' conundrum at present. One thing that makes me wary is that I've noticed in families we know who have more than one child on the spectrum, the first seems to have HFA while the later child tends to have classic (in other words more severe) ASD. Obviously this is purely anecdotal based on our experience but has there been research to support this, or do we just have an anomaly amongst our friends?

A. Richard: It was an issue I didn't know anything about, but I was interested in what I found out. Looks like latest evidence might suggest your anecdotal observations may be right - children born after an older sibling with autism who also have autism (IF they have autism, and this is of course by no means certain) have an increased risk for lower cognitive ability at least as young children. See the news piece about several research studies following this link.

There are lots of IFs in this though, and clearly only relatively few research studies. Who knows whether these findings will continue to be confirmed. I wish you the very best of luck with your decision - such an important one for you.

 

Q. zzzzz: I'd be interested in what you felt about the local authority stance that SALT is not available for children with autism in some counties. Is there any sensible rational for this stance (ie is there any truth to the idea that children with ASD are too hard to engage to get much value out of SALT)?

"All children should be able to access appropriate professionals and as children with autism especially have significantly increased language and communication needs, they potentially have even more need of SALTs."

A. Richard: It is hard to point to direct evidence on this. However, sounds rubbish to me. All children should be able to access appropriate professionals and as children with autism especially have significantly increased language and communication needs, they potentially have even more need of SALTs. In addition, some of the core interventions with an evidence base are focused on language/communication. Take PECS as an example.

I can only assume that the problem is overall availability. Denying children a service simply because they have autism would surely be discriminatory and thus on rather dodgy ground?

 

Q. zzzzz: Further to my last post do you think speech/language therapy shows any demonstrable benefit to children with ASD, or is their language deficit purely developmental?

A. Richard: Depends what you mean by speech and language therapy. I don't think this is somehow one approach or one intervention. I'm not an expert, but would expect children with autism may benefit from SALT in relation to a number of areas: physical speech production difficulties (not sure this is increased in children with autism, but I'd guess they may have problems like any other child), delayed language development, and development of functional communication amongst others.

 

Q. StarlightMcKingsThree: 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 seven years I have never seen an example either.

I have seen difficulties caused by language problems ie 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.

A. Richard: In general, 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 that are problems 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 (eg, 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.

 

 

Last updated: over 1 year ago