school worries

Hi Zoe, 

Sorry you feel uncomfortable about the editing made. Whilst I can understand that you'd want to discuss an intervention that you've found helpful that has to be appropriate. 

What we felt we were asking for was evidence to support your view of the experience and problems faced by a parent with a child with autism. 

For that reason the information taken from 'Relationship Development Intervention (RDI) as Evidence Based Practice for Autism Spectrum Disorder' read to us as promotional material despite the inclusion of a number of citations you have to support these points. 

We're sorry for the misunderstanding in our request for more studies, that wasn't intended to encourage the sharing of further information about a particular intervention, especially where it's unclear if that is something the original poster would find helpful.

So material will feel is out-of-context promotional material for a particular approach is something we'll always choose to remove, although in this case we wanted to avoid the removal of all of your message.

The sharing of this information wouldn't be inappropriate in all circumstances but it did feel inappropriate here. We'll obviously work to make it clear where appropriate boundaries do lie, but this didn't feel in the spirit of this discussion.  

Hi Lem

I have used the autism intervention RDI to help my son manage uncertainty and change better.  It's the uncertainty and change that cause much of the anxiety in autism, in my experience.

I wont go into it in great detail here, but I've written about managing uncertainty by addressing anxiety and developing resilience on my blog: http://notnigellanotjamie.blogspot.com/2011/02/resilience-and-autism.html  which includes footage of me working with my son in the special way that helps to do this.

A word of reassurance - studies have shown that when it comes to parenting a child with autism, what makes it much more difficult for us is that we dont get the feedback from our kids that parents get from typical kids.  The autism gets in the way of the child's ability to give feedback.  Without the feedback, there isnt reciprocal communication, and thats when things can become 'stuck'.  However, it is possible to help the child to develop their ability to engage in a reciprocal way....you'll see me and Philip doing it on my blog

Hope that is helpful

Zoe

Hi Jim

I feel very uncomfortable that my response to Francesca's request was edited in this way.  I read her request as asking for studies that provide evidence to show how a child can be supported to communicate in a reciprocal way.  I responded with citations that provide this evidence, including some studies that provide evidence for the efficacy of RDI (as this supports children with autism to communicate reciprocally). 

My edited out post continues by giving further citations that support the view that working on core difficulties in autism makes a significant difference to social communication and understanding.

I don’t understand why there is a problem with quoting these (peer-reviewed, published) studies? Surely this is exactly the kind of information (about any intervention, not just this one) that people should be allowed to share on this kind of forum? 

I hope I'm not coming across as a stroppy cow in challenging your editing - I just think we need to be really clear about the rationale for editing in this way.

Thanks

Zoe

Hi Zoe, 

Sorry about this, I think given the discussion is pretty general it's was just the particular study that may be helpful to discuss in this context. So the other studies you mention promoting the success of RDI, as opposed to talking about challenges faced by children and their parents have just been edited out. 

The title of the RDI-related research that is being presented at IMFAR (San Diego, not California) is 'Emotional regulation in autism: A relational, therapeutic perspective'.

This is taken from the abstract:

'In autism, difficulties with interpersonal engagement may disrupt the caregiver-child emotion regulation system. Relationship Development Intervention attempts to foster dyadic regulation. The present study reports objectively evaluated improvements in parent-child interaction within families receiving RDI, and now comparison with control groups is indicated. The relation between changes in dyadic interaction and changes in children's social-communication will be reported. Treatment approaches which focus on interaction between children with autism and their caregivers have the potential to affect the children's emotion regulation abilities which, in turn, are likely to influence other areas of emotional, cognitive, and social development.'

An abstract of the full presentation will likely be on the IMFAR web site in due course.

Hope that's helpful

Zoe

* edited by Jim V - mod

Hi Lem
Sorry to hear about the worries you have been facing. The freephone helpline Jenniferwave previously mentioned can be found here:
http://www.autism.org.uk/helpline

It might also be helpful to look at the education rights service:
http://www.autism.org.uk/educationrights

If you are interested in exploring possible inventions, it might be useful to look at Research Autism:
http://www.researchautism.net/pages/welcome/home.ikml

And hi Zoe, would it be possible to link to studies where you're describing what they've done - just so other people can see what you're referring to?'

You sound like you are making lots of positive steps to help your son in any way you can so try not to be too hard on yourself.

So sorry to hear that your son is feeling anxious.

You say you are always failing him and getting it wrong, but I wonder if you are being a bit hard on yourself. Sometimes it feels so difficult to be a parent, but the fact that you want to help your son feel as safe and loved as possible is a testament to the fact that you are a good parent.

I am going to make the presumption that your son has a diagnosis of autism, and here are some suggestions:

speak to the teacher again and discuss how the school feel they can help your son with his anxieties. If the school are not familiar with autism then suggest that the autism outreach team come in to give advice;

talk to other parents;

call the NAS Helpline or look online to find out what support there is in your area.

I remember when my son was a similar age to yours and he was very anxious. We tried explaining things in very simple language, often repeating reassurances over and over again, telling him what is going to happen next, so that we limited as much as possible the number of 'surprises' that might face him in a day. We also tried to do things that made him feel good about himself, giving him the choice of what he wanted to do. Also little things like having his hair stroked really helped soothe him.

I hope my words have helped in some way.