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

[RowanMumsnet]

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

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

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

Thanks
MNHQ

Hello,

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

@AgnesDiPesto

What research is there to support interventions for children once they get past the EIBI stage? We've had an ABA programme from age 3 and its great, still achieving steady progress and working well. Its become a very flexible, creative, real life based programme and fits well into mainstream school.

But DS is 7.5 now, he's 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 MLD/SLD 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 ABA being pulled out too soon or do we just have to rely on his individual progress? There is lots said about children who do amazingly and 'graduate' from EIBI and those with poorer outcomes who go to SS, 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.

His mix of super bright but super autistic doesn't seem unusual - most autism authors / bloggers e.g. Temple Grandin, Carly Fleischman seem to have been similar to DS at 7 and ended up at college. But there is a sense ABA should be for a few years at most then thats it you should have transitioned off it. But DS 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 around here a viable special school option that would match our success (or expectations).

Fab question AgnesDiPesto. Let’s start by quickly re-visiting this issue that ABA is the application of learning theory to problems of social significance, and Early Intensive Behavioural Intervention (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 would the children move onto. 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 them into further education or work. So, not such a focus on academic skills as is needed much earlier on.
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 for which 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 DS 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? Perhaps for some children, their learning problems will be fully sorted in a burst of early intervention. However, 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.

@AlarmOnSnooze

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

dd1 has severe ASD. she is progressing brilliantly, and has far exceeding 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. the look of longing and sobs of despair when she cannot manage it are too much at times - 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 I have dd2, a very high functioning Aspie. who 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. dd1 in particular is not happy a lot of the time, and I don't know how to help her be more content in life.

AlarmOnSnooze – this is a bit too far from my non-practitioner expertise to be able to offer many practical ideas for dd1 and dd2. You will need to bear that in mind when reading my response. 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 dd1 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 dd1 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 dd1’s skills developed) so that she DOES succeed rather than “not managing it”.
With dd2, 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. See my response to Starlight on this. Mindfulness can help with letting go of that striving and helps us take our thoughts less seriously.

@SomewhatSilly

What would you do if your 2/3 year old was diagnosed with autism today?

This is a super question SomewhatSilly and one I wasn’t expecting so I had to think about this. 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.

@TheLightPassenger

Thank you very much for doing this webchat. Like others on this thread, I have concerns about the suitability of enormous secondary schools for those with SN. 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 Dx?

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 kindness of 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 v bright but v quirky and q touch anxious.

Hi TheLightPassenger. I’m not sure if the diagnostic process you went through ended up saying clearly that there were autistic traits for SN. Diagnosis is not a precise process though. It is more of an art, especially for a disability that is defined by behavioural features (what you see in children) like autism. 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. So, there are clearly some factors outside of the child that affect the conclusions of diagnostic processes.
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 who have. So, helping SN 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 (e.g., 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.

@mandalaybay

Professor Hastings, what is you 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?

Thanks Mandalaybay. 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.
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 child 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’m slipping into talking about ABA, but then it is a good example in response to your question. 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 sorry again but ABA is a good example here. ABA 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.

@WireCat

Hello Professor Hastings. Thank y for taking your time to do this x

My son will be 5 in April. He's autistic, global delay & a few other problems. Very little speech.

I am having 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 Thanks x

WireCat – 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.

@StarlightMcKingsThree

A cheeky further quest in response to your posts:

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

It’d probably be when will Starlight stop asking so many questions?! More seriously, 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.

@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)

And another vote for Stralight question re mindfulness for children with ASD too

A health warning again here LadyInDisguise (what’s the disguise, btw?). 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 (i.e., with few errors) and this can be built with practice – lots of practice. It can work well though.
Here’s a link to a website about ways to help children develop fluency in key skill areas. Maybe rather a lot of 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.

Hi Professor Hastings,

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?

@COUNTRYANGEL

Hello Richard,

I would very much like to ask for any guidance and knowledge of Autism and Adolescence. My eldest son now 20 years old, diagnosed as Aspergers, studying for his degree from home with the Open University and socialises through the local University Student Groups.

Also I have twins, a boy and a girl, just turned 18 years old diagnosed as both 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, also it can start late, there seems to be agreement however that it goes on for longer than for main stream 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 and relationships and their own family life is 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.

I recognise this is a huge question but I am looking for a path though. There is a huge focus on children on the spectrum which is great but there is also much work to be done during adolescence and beyond.

Thank you for the opportunity to ask. Regards Angela

I agree COUNTRYANGEL 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 have just started a research project on how parents support the relationships/sexual development of young people with autism (so, from adolescence into young adulthood) and also have applied for funding for a parallel project on what young people with autism understand about sexuality/relationships and how they find out about these matters. However, that isn’t much help to you right now. We did do 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”.

Hi Can I also ask for 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 doesnt seem to be something practitioners offer? is this due to lack of research, lack of suitable effective treatments or some other reason?

@PipinJo

Hi Professor,

What is being done at UK national level to ensure that ABA is made 'mandatory' for a child with ASD to ensure they have a good start of developing skills needed to function and learn the best way possible?
It is compulsory in Ireland for under 5's so why aren't we '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?

I don’t think ABA is compulsory in Ireland PipinJo. There was what they called a pilot programme of ABA schools for a while that delivered provision on a wider basis. However, that pilot programme was stopped and now just about all these schools have moved to a model where teachers deliver the education. I’m not sure how many would consider themselves as ABA schools any more.
For me, this 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. Building on some responses to earlier questions, we need a system that supports all children continuing to learn 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, nor to wait for more and more convincing outcomes evidence. Early intervention is a matter of logic!
The research priorities, again as indicated previously, 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, it seems to me.

@Brucietheshark

Hi Richard,

I enjoyed the Cerebra 'promoting wellbeing in children with autism' on Wednesday in Birmingham. I found the two presenters (yourself included) speaking about siblings of children with ASD very reassuring, and I hadn't expected that at all.

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 ?

Great to hear from you Brucietheshark. By all means drop me an email too ([email protected]). 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 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’m sure much more will develop over time, and I’m always open to ideas.
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. Hoping to develop that over time. May be worth contacting the Psychology department at Warwick with an advertisement though if you haven’t tried that already.
For the rest of you, Brucietheshark referred at the start to a presentation I gave on the well-being of siblings of children with autism. You can download for free a research report I have just done for Sibs. 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 are a very useful charity, btw, for information and advice about and for siblings.

@cris01

Can I ask how far you should push going to school for a bright AS child? My son is 15, been to 2 mainstream high schools, a pru and is now in a specialist school (who still don't have a clue when it comes to sensory issues). He can't cope in any of them, he will be 16 in 9 mths, 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 its causing anxiety and self harm?He has no pediatrician and cahms don't seem to have much in the way of answers.

Again cris01, I’m not a practitioner/clinician (and apologies for repeating this). 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 phrase “pushing”. It would be important for someone to work with you and your son to look at what the priorities are over the next 2-3 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?

@ancientbuchanan

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

That’s a question I have never been asked before ancientbuchanan, so you must get a prize of some sort for that. I haven’t seen any research on this at all (although there may be some I haven’t come across). 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. Avoiding people altogether doesn’t help build relationships…Simply spending time doing something together (especially something that requires collaboration) might be enough – nothing more sophisticated may be needed. Sometimes, we over-complicate stuff unnecessarily.

@iclaudius

Richard do you have any views on 'screen time' and possible AD(H) D?

Sorry iclaudias, but ADHD is well outside my area of expertise I’m afraid.

@BumpyGrindy

Hello and thank you for coming! I would like to ask a question on behalf of my friend whose just-turned 4 year old son is undergoing diagnoses for Autism.

He can speak but it is mostly Echolalia 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?

I think the core of your question BumpyGrindy 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 (see here) which focuses on functional (i.e., 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.

@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 .

It seems so very odd that they aren't included - 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 living with autism for decades barely get a look into 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 adults versions of themselves. This obviously needs to be improved with greatly 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 (the quiet hands issue was particularly a sore topic for many).

Has it changed so much in within 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 neuroatypical parent, with children on all sides, I am very uncomfortable with an idea or technique being held up as the Holy Grail that those who have gone through it seem to be so adamantly against, 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 him recover from). Surely that is one of the most important pieces of evidence, the lifetime results, that oddly seems to be missing in most of the conversations around this.

TheSporkforeatingkyriarchy – there are several points in here and I’ve written about some of them before. Please do take a look at my blog, and especially perhaps this post re broader criticisms of ABA.
One observation I would make is that 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 (as you say) that EIBI has been around for a longer time that other interventions so we’re bound to see the complaints from adults now being primarily about “ABA” rather than other practice.
If you want to see a positive video from an autistic adult, then take a look at
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”.

@RaRaTheNoisyLion

Hello Professor,

I'm currently studying the course 'Understanding Autism' with the OU. It is an undergraduate, first year module the sort and I understand has a number of education professionals or teaching assistants taking it if they are lucky to get funding, as well as a great deal of parents of children with autism (as many are only able to access online studying due to their caring commitments).

A question in the course chatroom was raised as to why their Intervention chapter didn't mention ABA, only Lovaas, with an evaluation that spoke of intense 40 hours of 1:1 and punishments.

They gave 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.

1. 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 from NOT including ABA in these types of courses.

Thank you.

I’m glad that you are debating/discussing these sorts of issues RaRaTheNoisyLion. An interesting mix of perspectives in your two points/questions. 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 “the child is always right”.
Apologies for shortcutting to stuff I have written before, but 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 5th 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. Rather than simply complain, like many folks do, I wrote a set of what I hope are useful educational blogs that might be useful for ABA supporters and critics alike.

@Upandatem

I've got a question about the role of medication. We took the difficult decision to allow DS1 (7) to have Sertraline, it seemed to have an immediate and very positive effect in helping him get rid of his phobia of dogs. This enabled him to be able to go out at weekends and all sorts - we've actually been able to get a dog now which has added a whole host of benefits to his life.

Do you see a role for medication in children with autism? I know Temple Grandin 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. Would be very interested to hear your thoughts.

Upandatem – Personally, I very much dislike the use of medication for any children when the focus are problems of a psychological nature. I’m stating clearly that this is a personal view, and 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.

@zzzzz

Do you find the current practice of classifying individuals as HFA/Aspie/LFA is helpful in finding the value of different interventions? If you were going to split the "autistic" population into sub-diagnosis what criteria would you use and what insight could that give us into intervention/outcome?

Possibly zzzzz. I’m not big on diagnostic categories at all though 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. 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 (i.e., 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.

@Mollyweasley

Dear Professor,

There are a lot of people who come to this board for help because their children's behaviour is very difficult/unusual at home but very good at school. The referral system for psychological support wants teachers and school to play a crucial role in children and family getting the help they need. So when the symptoms do not show at school, families can not get the psychological help they desperately need. Professional (teachers and GP) seem totally unaware that ASD can be situational (i.e symptoms doesn't occur in all setting) 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 mental health is. We have had that struggle and our son was finally diagnosed with Aspergers Syndrome after 6 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.

I think you have just said it very clearly Mollyweasley! What I can add I guess is to explain just a little about why. 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. 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 in what situations the behaviour tends to occur 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 – so, 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 – see earlier response on parenting behaviour and parenting stress. Instead, the dynamic of the two-way effect of child’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!!