Why autism education needs to change

Thank you to everyone for participating in this discussion thread, however I have decided to close this particular discussion thread - Acting Community Manager.

Participants are welcome to continue discussing interventions including RDI on a separate thread should they wish to do so.

I would like to remind all participants that healthy debate and discussion is welcome but that personal criticism or hurtful comments should be avoided. Please think carefully about the impact of your post before you submit.

Participants with any related business interest should refrain from using the community as a place to promote that business interest. However, putting forward a case for a particular type of intervention does not necessarily constitute business promotion.

In regard to the NAS position on interventions this remains consistent. That the NAS allows discussion of interventions, in the community, in no way implies any endorsement or approval of those interventions.

The community is a good place to debate and learn about those interventions.

The NAS general position in regard to interventions is:

The outcome of any approach will depend on the needs of the individual, which vary greatly, and the appropriate application of the intervention. An intervention that may help one individual may not be effective for another. It would therefore not be appropriate for The National Autistic Society (NAS) to recommend any one particular practice or therapy.

The NAS has no explicit position in regards to RDI

A checklist of points to consider before choosing an intervention can be found here

http://www.autism.org.uk/living-with-autism/approaches-therapies-and-interventions/before-choosing-an-approach.aspx

I am a little bit confused by the description of RDI as an ABA.  My understanding of the RDI approach is, as is explained by Morris on the Autism Help site http://www.autism-help.org/intervention-relationship-development-1.htm, that RDI differs from ABA in that "instead of trying to directly alter behavior, RDI focuses on cultivating the building blocks of social connection - such as referencing, emotion sharing, and experience sharing - that normally develop in infancy and early childhood". As Zoe has explained very eloquently above, it is about providing the child with opportunities for engagement in the way any parent does with their children across cultures, not about trying to get the child to do something. It is about going back over the developmental steps that have been missed in order for the child to develop flexible, adaptive thinking....

Zoe id not a parent turned salesperson but as I understand it runs an RDI school. Most forums would delete such blatant adverts. There is a difference between parents who have tried an approach wanting to share advice and people who earn their living from a particular approach, I think Zoe is in the latter category.

Elsewhere on this forum I have given my thoughts on a few autism interventions. As this thread is now clearly a promotion of RDI I feel that I should comment here about ABA’s in general and RDI in particular.

Firstly I would like to disclose that I have no interest, financial or otherwise, in any autism products or services.

ABA’s have been coming out of America since the 80’s and are constantly evolving as new theories and ideas come along. RDI has been around for about 10 years but has only recently made the leap across the Atlantic with the first RDI councillors starting up over here about 4 years ago.

RDI is an ABA no matter how you dress it up and as such I can see no reason why it shouldn’t be just as successful at accomplishing its goals as other, more established ABA’s such as Lovaas.

It is important to recognise that although RDI still has no independent studies into its effects, when some are published they will only have limited scientific validity. This is true for all ABA studies to date.

Even the now famous 1987 study by Lovaas which showed approximately half of the children who started the Lovaas programme by the age of 3, were able to fit into mainstream primary education at the age of 6 was scientifically tainted. Although they used a control group of similarly impaired children they didn’t employ double blind procedures so the results were contaminated by participant bias and expectation. In fact I think it is impossible to employ double blind procedures because of the very nature of ABAs.

So although ABA’s clearly have a high success rate for achieving their goals it would be wrong to compare these success rates to those of biomedical interventions which are considerably cheaper and have numerous scientifically sound studies into their efficacy.

With all interventions the earlier you start the better the prognosis but our children’s childhood flies by so fast. There is not enough time to try everything randomly so parents must use their own unique set of observations of their child’s problems to try to guess what is right for their child.

Some parents and people on the spectrum are uncomfortable with ABA’s in general seeing them as hammering a square peg into a round hole and I acknowledge and respect that perspective.

However I also respect the opinion of parents who do think that an ABA is the way to go for their child. If you fall into this category and you have the means to follow it through then choose your ABA wisely.

Parents of children who have benefited from a particular ABA are often used as salespeople to gather new recruits. Zoe’s zeal is testament to how effective they can be and you will meet many more of them spouting the merits of the particular ABA that their child benefited from.

It is a jungle in the ABA world with very high stakes all round. It is difficult to give clear advise on how to sift through the sales patter of different ABA success stories in order to determine which is best for your child.

I would suggest that first you look at the methods employed and make sure you are comfortable with all of them. Then look at the results because, after all, that is what parents who go into the ABA jungle are looking for. I would be very wary of somebody trying to sell an ABA, theory first. Few of us have the time or inclination to become a pseudo neurologist to properly evaluate those arguments.

Good luck with your choice of path if you go into this jungle.

I think that Hope's comment was accurate and helpful and it is something to bear in mind, Zoe. However, a person with autism  may disagree with someone, not because they misread a situation, but because they disagree! Longman has given a valuable reminder of what it can be like to be on the receiving end of well-intentioned interventions.

Jim V - your comments did read to me as less balanced than you were probably intending.

Thanks for this thread, it has given food for thought.

Thanks to Hope and for your thoughts on the dialogue Zoe. I apologise unreservedly for any offence caused though none intended in my postings.

I stand by the sentiment of my previous post Hope but now I've read it back I do think you have a point that it could have been phrased more gently.

Longman I'm sorry if I was too harsh - I think we have a lot to learn from each other and would like to be able to continue to do so.

Zoe

I have read the  threads with interest. It seems to me, Zoe, that you were a little bit harsh with longman, bearing in mind that, as a person with AS, he may at times be a little bit blunt. I myself have unwittingly offended a few people on discussion forums before. It can be difficult, as I am sure you will appreciate, for people with AS to think imaginatively and so see another person's point of view, however hard we try.

Thank you Jim for your moderating input - I think it was needed for both of us and I think you did an excellent job.

Yes I did get upset about the remarks made by Longman because, as you pointed out, they felt like an attack on my parenting competence.  They also felt like an attack on my personal integrity.

Thank you Longman for subsequently trying to see it from my perspective. Your posts dont make any reference to children of your own, so I am guessing you don't have children?  I can understand how it may be difficult for someone who hasnt had parenting experience themselves to put themself into a parent's shoes.  And I can see how those difficult experiences you had with your own parents as a child must have heavily influenced the way you respond to autism interventions.

However, if I can firstly point out one huge difference in what I am suggesting (RDI/guiding) to what your parents did - it sounds like your parents forced you to do things that were too challenging for you.  My guess is that you will have withdrawn or become very distressed - a totally natural response to a challenge that is too difficult.  This happens to typical people as well as people with autism of course - but what your parents didnt realise was that you didnt at that time have the thinking competencies (executive functioning) in place to deal with the challenge.  Impairments in exec functioning have been shown in lots of research to be common to people with autism.  So the experiences became aversive for you.  This is not the case with RDI where experiences are all about finding the right level of challenge (just at the edge of the child's competence) and ensuring that the child is able to competently resolve the challenge.  It's not aversive to have someone enabling you to be competent.  It promotes resilience which ultimately leads to good mental health.

You seem to be stuck in thinking about what I am describing, as 'training' in the same way that an animal might be trained i.e., by repeating the same action over and over until the animal masters the task (challenge) and then rewarding the animal.  In RDI, we might use the same patterns (such as turn taking) but our activities are full of variation.  The variation is where the challenge comes in for us, once we have established competence in the initial pattern.  We dont use external rewards - we tap into the intrinsic motivation of humans to be social.  In autism, this intrinsic motivation has been derailed and what we are doing is re-igniting it.

Secondly, I am not saying there is a 'cure' for developing non-verbal communication - that would make autism a disease, and I personally dont see it that way.  I see it as a number of developmental steps that have been missed in early childhood leading to deficits in social communication and social understanding.

It generally takes at least 20 years (sometimes a lot longer) for practice to catch up with research.  Research into RDI is currently underway, but because RDI is a relatively new intervention and because of the way research funding works, there isnt yet a body of evidence to support it.  That doesnt mean it doesnt do what it says it can do - it just means the research hasnt been published yet.

I cant afford to wait 20 years (maybe 50 years?) for an organisation like NAS, or government or an education guru to tell me that this intervention works.  By then it will be too late for my child.  I am intelligent enough to look at the evidence for myself and to make an informed decision about what is best for my family.  And I would encourage other parents to do the same thing.

I personally think it is not doing families of people with autism any favours not to share what we know now.  Thats why I am writing my blog and thats why I make comments and tell people about RDI on this forum.  We have to trust people to look objectively at information (even if 'scientific evidence' is currently limited) and make their own minds up.  We must also acknowledge that 'scientific evidence' is not the only form of evidence to be taken into account, and often had many limitations.

I will give my side and if people want to challenge it I have no problem with that because whilst there may be no peer reviewed, published 'scientific' evidence yet that RDI does what it says it does, there are reams of peer reviewed published evidence for the principles that underpin RDI and for the theory on which it is based.

Thanks JimV-Mod for clarifying. As someone inclined to get pedantic, dogmatic and fanatical at times, I'm not without awareness that I can go too far, or unable to restrain myself, so heartfelt apologies to Zoe for any aspersions (not intentional) on her child rearing or her best intentions.

My concern is that we do not lose sight of the pragmatics issue. I have seen too much, and read too much, and heard too much at conferences about adults or post-transition youngsters being told they are cured by drug treatment or therapy, and that its down to them if they now cannot make it in the world. The fact, which seems not to go away, is that face to face reading and replication of expressions and understandings is a major barrier for people on the spectrum.

The non-verbal communication barriers cause negative experiences to recur, undermine confidence and undermine previous therapy.

Therefore what I would ask is that people do not imply that there is a cure for this, whether inculcated or self addressed via counselling, unless there really is some certainty of achieving this laudible objective.

I don't want to present a depressing picture of my own upbringing. Its just some of my parents ideas created more problems than they solved. Fifty years on I was hopeful that we had perhaps moved forward somewhat from making things harder by reiterating learning tasks.

I do feel that much of the time we are still not understanding enough to be effective enough. Do we talk to late diagniosed adults enough I wonder, in order to find out how they coped (or didn't cope)?

The important point I was making is to be able to distinguish between real progress and children chosing the path of least resistance - doing what the parent/carer/councillor wants just to get through the nightmare of the councilling, or becoming overly reserved as in the example of stimming, to avoid doing anything that draws attention.

And I remain perplexed by 'social stories' as to whether children respond to these by learning what to expect rather than actually resolving their pragmatics issues and ability to receive and transmit social informatiion that depends on this.

And just to say, if people do feel I've been too partisan in this discussion do let me know - I'll happily take that on board in the future. But obviously I'd rather find a way for this discussion to continue than make it about moderating.

Hi longman,

I'm really sorry you've taken my response that way. I'm certainly not intending to take sides and the last thing we'd ever want is that you'd feel you can't question what other people are discussing - that is exactly what the forum is here for.

Nothing discussed here is being endorsed, as you say it's an opportunity for parents and people on the spectrum to discuss new methods. Because something is mentioned doesn't mean that it's endorsed by the NAS in any way.

I think the issue is more that the sense I felt when reading your response did seem to be quite challenging on a personal level to Zoe, and her response equally to you, which is was what I was concerned to address. I know that wasn't your intention but that's the way it read to me and I think, from her response, the way it read to Zoe.

I think this discussion has been really interesting to read and very informative, and your contributions and Zoe's have been really valuable. But naturally when talking about how someone is bringing up their child feelings can be hurt quite easily and as a moderator it is my role to try and highlight when that has happened and hopefully allow discussion to continue openly and without people feeling hurt.

I hope you can understand where I'm coming from, please don't mistake my intentions - I'm certainly not intending to back one particular side of this discussion.

It is also pertinent to add that this thread opened with a declaration that autism education needed to change, putting RDI forward as a solution. If NAS is advocating RDI why isn't this on the main website? It has cropped up in a number of threads. If it is not open to discuss new ideas when promoted on the Community Forum perhaps NAS could clarify what they expect here.

I don't see other new ideas being promoted on the Discussion Forum in this way, although parents/carers' experiences of existing measures is healthily discussed. It does concern me that the discussion forum is being used to promote a new service when there isn't a balanced discussion of options.

So are you saying that face to face reading of non-verbal information is curable?

I'm not being blinkered through my own experience. But I am trying to caution against overly doctrinaire approaches using my experience, and playing devil's advocate to an extent. Zoe was rather personal in her first line comment before last, and seems to be taking my most recent comment very personally.  I am after all a scientist with a PhD and an educator, and besides my own experience have been supporting people with ASD at University.

I would ask the moderator perhaps not to be too one sided here. Perhaps the rest of the community have an input on this. I think the idea needs airing. However I think it also needs to weigh up other factors. After all what are we here for? Am I supposed to stand to attention and take in all these ideas without question? Surely the benefit of having parents and carers and above all people with aspergers on this discussion forum is so that solutions can be explored.

Therefore I have to comment that I find Jim V Mod too partisan.

It's also worth noting that Research Autism is the place we'd recommend for looking for additional information about autism related interventions.

Relationship Development Information is included in their list of interventions so it may be something you'd consider reading longman?

At the moment Research Autism do not have enough scientific basis to recommend the intervention but given the level of anectodal evidence into it's benefits do feel it warrants further investigation.

You can read more here -

http://www.researchautism.net/autism_treatments_therapies_intervention.ikml?ra=66&infolevel=4

and you can see the full list of interventions covered by Research Autism here -

http://www.researchautism.net/autism_treatments_therapies_interventions.ikml

Hi,

I think it's really important that people do try to always take a step back and understand what someone else is saying. Clearly what happened in your childhood longman is something that's had a long lasting impact upon yourself. But it's important to bear in mind that because something seems similar doesn't mean it's the same thing.

I'm sure Zoe would never want to do anything that would produce the extreme discomfort and difficulties you experienced when growing up when overloaded by your parents behaviour. I'm sure she'd agree that she would never want to see anyone treated that way and it's worth understanding your reaction, even if it seems misplaced.

So I'm sure people reading this discussion would feel horrible about what happened to you longman - but it's important not to assume that because something has superficial similarities, in description if not in practice, to what you describe as a starting point that the intention is to cause the same situations to occur.

May be it would be worth taking some time to look at what Zoe has mentioned and consider if it really is the same kind of rote learning you experienced.

Its not robotic compliance.  You are totally misunderstanding what is happening and I am wondering if you have actually viewed the video footage?  Did you see how much joy there was in our interaction - how he made a joke of his towel turning out like a 'nappy' and us both having a laugh about it?

There is nothing robotic about that - he is adapting in the moment and having fun.

I am not doing 'repetative, repetative, get it right' with my son (as your parents did with you).  I am not forcing him - he is motivated to be with me and to share experiences and emotion with me.

If you are horrified by the activities I am describing then you must be horrified by how every parent parents their child in every culture throughout the world, because what I am doing is reinstating the natural parenting process.

RDI is not an aversive process and it is totally respectful of people with autism.  Perhaps you should talk to some of the children and adults who 'have been on the receiving end' of RDI before you make up your mind to close your mind.

I am insulted and offended by what you are implying in your post - you are casting aspersions based on no evidence except your own misunderstanding.

There's a corollary I forgot. One of the things I acquired was permanent avoidance of expression. I didn't dare gesture. Made things worse in retrospect as for many years I avoided moving my hands and kept them by my sides and avoided expression to avoid problems.

I've seen this with other people with ASD and I wonder if the related diagnostic is to do with children avoiding the movements and expressions that got them into trouble.

After repeated use of the same illustration, such as folding towels, I'm given to wonder if any child in that situation discovers in the end that just robotic compliance, the line of least resistance, is the best form of defence. Is that doing any good at all? I doubt it.

Thanks for elucidating Zoe,

I understood your first part perfectly - what neurotypicals do is not in question. The problem facing people on the autistic spectrum is how to achieve comprehension of facial expression and how to generate the correct facial expression.

The bit about folding towels and reiterating tasks with your son from resistance to compliance horrified me. Basically it is what my parents tried to do with me.

Latterly I'm grateful to them that they did, not least because their resistance to outside interference prevented me being institutionalised (I was born in 1950) or put on inappropriate drugs. And some of their methods were valuable such as memory trays, which gave me phenomenal recall.

However a lot of it was repetitive, get it right, get it right .... The worst was when they both were going at me, regularly hitting overload. To stop me stimming they went on about not doing anything, over and over again until I stood stock still arms by my side. The regimentation and endless training did me a lot of harm in the short term and it took years to unwind all the hang upos they created.

Hence I'm truly horrified this is what you are doing to your son.

Unfortunately my parents didn't grasp the bit about eye contact and reading expressions, except to insist I look them in the eye, however painful I found it.

There are too many well meaning therapists out there with a theory but limited grasp of how it feels to be on the receiving end.

I wish NAS would pay attention to some of the theories being raised.

Hi Longman

I think I can see why its hard for you to understand some of the concepts I'm writing about, but you've got it right when you say that in order to better socialise, you'd need 'good eye contact and facial reading skills'.  Its referencing for information rather than eye contact and yes you'd need to be able to read facial expression as well as prosody/intonation and gesture and body proximity.

You cant 'teach' people to develop these non-verbal comunication competencies, they need to develop it instinctively.  So what you do is you put all the right components around them to enable and facilitate them to reference.

We reference for information to enable us to make decisions about what to do next.  Take a look at this clip of social referencing in a baby who is not yet walking:

http://www.youtube.com/watch?v=eyxMq11xWzM

The baby references (looks to the face of) his mother to decide what to do in the face of uncertainty.  The uncertainty is around whether or not its safe to venture across the visual cliff to the toy.  So this is how referencing develops naturally.  In RDI, we put kids and adults in situations where there is uncertainty and decrease verbal communication so that they have to reference for information about what to do.

Facial expression and other forms of non-verbal communication all transmit emotional information - that is what the baby is reading on the mother's face.  Its not an empty gesture to look at someone's face (which is my interpretation of 'eye contact').  Its a deliberate attempt to gain an understanding of what someone else is thinking.  Emotion shows what we are thinking - Mum's fearful face shows she is thinking 'fear' thoughts.  The happy face shows she is thinking 'happy' thoughts.  Emotion  = what we are thinking.

We also reference to 'check in' with our social partner during an interaction when we are in a co-regulated pattern (eg my turn, your turn).  Partner A (in the role of 'guide' in RDI) takes an action and waits for partner B (in the role of 'apprentice') to take their turn.  Partner B takes their action and then references partner A to make sure that the action they have just taken is within the mutual framework and will help to achieve the mutual goal.

If the guide has established trust with the apprentice, the apprentice will generally competently take their turn and 'check in' to make sure they are on track.  You can watch video footage of me putting everything around my son so that he can competently take his actions (towards our joint goal in our co-regulated interaction) on my blog http://notnigellanotjamie.blogspot.com.  The 'folding towels' one has got a fair bit of him referencing me to make sure he has folded the towels neatly.  Folding neatly is our joint goal - but I havent told him this verbally, he trusts me to facilitate his competence and enable him to be a genuine reciprocal partner in our social interactions.  (It has taken me 3 years to get us here - thousands of hours of activities where I am guiding my son in this way and starting off initially with total resistance).

If the apprentice resists taking the action, the guide either waits or uses limit-setting and boundaries to facilitate the apprentice back into the frame.  Or if there is too much uncertainty (ie the uncertainty is too big a challenge for the apprentice) it is the guide's job to make the task simpler and/or to help the apprentice become competent (scaffolding). It is the guide's job to make sure that challenges are just at the edge of the apprentice's competence.

This works with both children and adults and what I'm describing here is just the very start of the process to support the development of flexible, adaptive thinking and social understanding. There are  nearly 1,500 developmental steps to master in RDI.  It takes me about 6 months per objective.  Other parents are much faster (I am pulled in many different directions) and this was part of the rationale for setting up our school - so that we can immerse our child in these developmental opportunities.

Has that helped you to understand it better?

Zoe