Why autism education needs to change

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  My guess is that you will have withdrawn or become very distressed - a totally natural response to a challenge that is too difficult.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.

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.