'Super-parenting' improves children's autism - BBC news re

[FSFRebecca]

The BBC Health news have today published the research findings of a study led by Prof Jonathan Green from the University of Manchester. Prof Green's results have been published in the Lancet, but the BBC article is very readable and accessible. I know we have got some specialist on the forum .. do you have any experience of this? let us about it!

 

'Super-parenting' improves children's autism - BBC news report

[sunnyday]

Saw this earlier - I am by no means an expert/specialist - but all makes perfect sense to me........

 

My only negative comment would be that it seems to get harder and harder to get 'early' help and support wonder if that is everyone's experience or have I been especially unlucky/unskilled?

[Mouseketeer]

Saw this earlier - I am by no means an expert/specialist - but all makes perfect sense to me........

 

My only negative comment would be that it seems to get harder and harder to get 'early' help and support wonder if that is everyone's experience or have I been especially unlucky/unskilled?

I agree sunnyday ....all we hear is 'early intervention' until you want help then you're on yer own :-(

[sunnyday]

I agree sunnyday ....all we hear is 'early intervention' until you want help then you're on yer own :-(

One of my parents (last years cohort) has spent an absolute fortune on private specialists as she was so very frustrated with the 'wait' for NHS appointments - its all wrong, lots of parents couldn't possibly have afforded to go down that route.......

[Upsy Daisy]

I feel cautiously optimistic about the small amount I've read and I would like to share a few random thoughts.

 

The results are impressive so far but the participants seem to have been a relatively small group selected from quite a narrow band of children with autism so those result may not stand up so well to a more varied sample. Lots of children are not even assessed until well into their primary school years and girls with autism are often not diagnosed until their mid teens.

 

There is a view amongst some parents that this will just be another way to make them responsible for supporting their child, letting health, care and education off the hook. It could also be used by less knowledgeable professionals as evidence that some parents are failing their children in some way by being unable to naturally support their play correctly. There is a deep rooted culture of looking first for what the parents are doing wrong when a child is having social communication difficulties. It would be a shame to consolidate this view.

 

We also need to remember that, while 'super parenting' could offer improved outcomes for children, just normal everyday parenting for their child with ASD may already be destroying them some people. These are parents who are often significantly sleep deprived, having to remain constantly vigilant for signs of stress, constantly supporting communication between family members, never able to take their eye off children who have no sense of danger or who may be aggressive to siblings, often coping with more than one child with ASD, unable to rely on friends for a bit of childcare or to go on holiday, juggling the need to earn a living with multiple meetings with schools and medical appointments, fighting endless battles with LAs for appropriate educational provision which demolishes them cognitively, emotionally and financially, etc, etc. This is an additional burden that some parents just do not have the capacity to take on.

 

It would be interesting to see how this could be developed as an intervention in schools. Families of children with ASD who mask their difficulties are crying out for ways to help education providers spot the very subtle forms of communication their children display. Often the parent can spot the signs that a child is reaching out, trying to communicate or struggling in some way but the adults in their child's school appear to be blind to them. It can be a dream come true when someone stops and looks harder at your child, trying to develop a deeper understanding of what they are thinking, feeling and needing. A teacher or TA could use these skills to support dozens of children on the spectrum, not just the one they are working with while they are being filmed.

 

I share Sunnyday's concern that it is harder and harder to get children assessed at this early age now LAs are withdrawing SEN support and contributions to diagnostic assessments so this type of early intervention will be available to fewer children. Who will this programme be used for if younger children don't have a viable diagnostic pathway? I can't imagine it being available for children who are being considered for a diagnosis. It would be considered far too expensive.

 

I can see this being a wonderful intervention for some families while also bringing an added burden of blame for others, especially if the basics of this programme are taken and used by people who aren't sufficiently skilled or resourced to provide it effectively.

 

One last point is that there is a view amongst some people with autism that they don't necessarily need fixing. Whilst I don't think anyone would argue that helping a child to communicate or share experiences is a bad thing, it doesn't necessarily follow that all autism interventions are appropriate. There are adults who, as children, experienced ABA therapies which appeared to improve their outcomes but now say they feel traumatised and violated by the 'treatment' they underwent. It doesn't hurt to remember that some of the behaviours we associate with autism perform really useful functions and it can't be assumed that they should be suppressed or changed. Repetitive behaviours, deep interests, echolalia, social withdrawal and rigid routines can make it possible for people to manage the other things that society demands of them.

[SueJ]

I watched the news report and began to recognise some of the strategies that were being talked about.

 

The article and news report did not give sufficient detail about the programme used but some of the elements sounded very much like the strategies used by a programme we use in my neck of the woods called PEIC-D. This programme is meant to encourage interactive "communication", focussing on the aspects of communication that give meaning without words and uses tiny steps to engage children in non-verbal communication as a pre-cursor to eventually hoping to encourage verbal communication. A better explanation is available from this link below:

 

http://www.poole.gov.uk/education-and-learning/parental-support/promoting-early-interactive-conversations-dorset-peic-d/

 

Like Upsy Daisy has said however using programmes such as this can we wonderful for some families but not great for others and as others have said you are back to £s.

 

Any early intervention strategy will only work if there is enough money behind it to make it possible - people need to be trained and free'd up to deliver the interventions which all comes at a cost. As it is we struggle to get sufficient (if any) funding to support the children we have with additional needs - programmes such as this rely on one to one support delivered with a consistent adult - a couple of hours here and there just doesn't do it sadly.

[Mouseketeer]

Like you SueJ I watched the clip and thought 'this isn't new, it's PEIC-D', we've used the strategy for a few years but until a recent staff meeting when trying to figure out what the initials stood for and looked it up hadn't realised it was a local communication strategy rather than national and it does work, the first time a child looks up and makes eye contact with that 'what the h*** are you doing' face, though fleeting, is like a eureka moment, my staff are great at finding the opportunities in play to interact in this way but it's difficult when taking staff from normal ratios, we find the child needing support gets it as they often demand it and there is little option but to support on a 1:1 basis, but then feel the other children miss out because they are an adult down ....no easy answer unfortunately :-(