Autism research!

[StarlightWithAsteroid]

www.basisnetwork.org/index.php?option=com_content&task=view&id=67

Oh yuck!

I think Starlight and Porridge have worded it much better.

The abstract doesn't specifically mention mothers, though, does it? I wonder if the research will differentiate between primary carers (usually the mother) and others?

Prof Green did the PACT study which was one of the first properly funded bits of research by the UK govt into autism interventions. Even though it showed no real positive benefit for the children, the group still got more funding to do more research. The intervention was based on parent/ child interactions and a bit floortime-ish if I recall however the major drawback being the intervention was designed to be delivered within existing SALT funding streams (so massively inadequate). Which just goes to show that UK will fund research into cheap interventions until the cows come home before they will try piloting for e.g. Early Denver which has shown good outcomes for exactly the same cohort of child but requires a significant increase in cost.

The title is 'Mother-infant interactions in at risk autism siblings...' unfortunately. They should really get their writers on a course.

Maybe we should send them link to our posts!!

The fact is if you are not being blamed for being 'too sensitive' a parent, you are blamed for being 'too cold'.

Make your minds up chaps! Which cheaper method of blame do you want to pursue? Granted both are easier, and much much cheaper, than putting services in place to ensure early ?preventative? work.

Can you imagine what form this intervention would take?

"Hello stressed, crap parent of older autistic child, I can see you are on your knees because of a system that makes you fight to the death for even crap provision but here I am, a crap health visitor who knows bollocks all about autism save for watching Rainman. I have been told to save your younger child by 'opening up' a 'form of targeted parent-mediated intervention' with you.

What? What services will be made available to help you, you say? Oh, none, this is about targeted parent-mediated intervention.

Will you be getting more support for you and your child? Noooooo, this is about targeted parent-mediated intervention.

Can you talk to someone about accessing the kind of early intervention your older child should of had? Oh, bless you, you are getting very confused. You don't understand what I am saying do you? This is about targeted parent-mediated intervention.

Now come and have a cup of tea and tell me all about your older child - does he like lamposts? Trains? They all do don't they???"

AAAAAAAAAARRRRRRRRGGGGGGGHHHHHHHH

Aah, didn't see the title, Ellen, surprised that part got through.

OHHHHH I went and read it

How about actuall using their loafs and working out that if the parents already have a child with ASD they have been ignored, missbelieved, blamed and had to fight so hard for anything that they gave up and learnt more about their childrens needs than the proffessionals themselves and so they are more equiped to recognise and put early intervention measures in themselves WITHOUT nosey busybodies interfering and that is why they apply for dx early

Stupid pile of...........

What about mothers who may be undiagnosed but on the spectrum?. Surely that's going muddy their waters?

Have you looked into the PACT study? They showed intervention made little difference but do you think they didn't do enough intervention of the right intensity?

That's right googlenut!

There is plenty of research that certain interventions DO make a difference, as well as plenty of research that shows what we deliver as standard in the UK does not!

The chief researcher invented the www.medicine.manchester.ac.uk/mentalhealth/research/psychopathology/socialdevelopment/researchprojects/index.aspx?ID=2524&Control=TagList1playground relationships measure. Which if used routinely would mean schools could actually track peer interactions properly.

I think the blurb for this study is rubbish. Though the difficulties of interacting with a baby who is not responding typically, can probably exacerbate the asd issues. Looking at interactions on video is useful if done by genuininely expert assessors. Done exceptionally well, this study might be the final nail in the refrigerator mother theory's coffin.

playground sorry

Thanks Maria, that's hopeful!

Ds has 2 older siblings without ASD, he was my 3rd born.

There was quite a big age gap too, my other children were quite independent. So ds got a lot more of my time and attention and more opportunities for social interaction.

His development was quite normal until about the age of 2, it was me who noticed that his development wasnt normal after 2, like many parents do. But he didnt get a dx until 5 and half, because of professionals.

There should be a study on what professionals can do to aid early intervention

Star
I was a mess wrt toby when w
He was a baby/toddler.
Every tiny thing made me wonder.
One day he was walking up and down the room on his tip toes....I spent the whole afternoon in tears!
I think Toby is nt. but who knows?
What I do know is I can cope if he isn't.
And you sure as hell can über mummy! /)

Badvoc - are you drunk? Or still getting the hang of your DSs iPad? :)

We did the PACT study with DS1, but were in the non-treatment group. It turned out that with DS2, a clingbot, to care for, I wouldn't have been able to travel to and participate in all the "intervention" sessions with a bouncy DS1. It's 4 or 5 years ago, so I can't remember the details of how frequent they were meant to be - it was weekly-monthly rather than daily, as ABA interventions would be.

Having seen the video presentation of the interventions involved when the results were presented, it was encouraging a really intensive sort of engagement with the child with ASD - more than would come naturally to most people and given the number of people I know who unfortunately struggle to interact in a positive way with their NT children, I could see where it would be of benefit.

The sample would have been far wider than that, though. The ADOS style assessments were carried out several times over about a year and in that time, DS1 went from refusing to engage with the tests unless I administered them and showing as significantly language delayed to reading the script over the assessor's shoulder and telling her all the answers straight off and coming out as age appropriate in the language assessments.

In the end, they concluded that the effect of the intervention wasn't significantly better than that of sending parents on an early bird course. There's so little research like this that it sounds like a luxury to suggest it, but I do think that research should cover the effects of interventions on targeted groups and not just in a blanket manner.

The PACT study also focused on higher functioning, verbal children with ASD, so there are still no studies like this on the effect of interventions on non-verbal children. One thing we've found over the years is, that while there have been various sources of help for DS1, there's been very little for DS2. He was abandoned by OT because he couldn't complete the tasks they set for him. Yes, of course he won't even touch spaghetti, that's why he's with your service! The school paid for some movement disorder advice for him, recently. They tried to get him to walk along a winding skipping rope and he wouldn't, so they declared that they couldn't help him.

I'm veering off course, anyhow. I don't see the proposal for this study as being all about the "refrigerator mother" theory and don't find it offensive in that sense. I do think it's trying to get at the idea of early intervention and explore how useful pro-active intervention before there is a diagnosis one way or another could be. But yes, it's very clumsy about it. From a personal point of view, DS1's diagnosis made us more alert with DS2 and we were looking for things that needed "work" before we even asked for an evaluation for him.

So should we email this thread link to the researchers then?

I see no issue with it at all.
If it helps us to undestand why some children have ASD and to offer them help earlier, then it can only be a good thing.
When research agendas are dictated by political niceties and fear of offending, we had into dangeroud territory.

My daughter has a serious medical condition?
I don't know what caused it (neither does the medical profession) but I would like to know and if it was me in some way, then I wouldn't take it as an attack. I did/do the best I can with the knowledge I have available to me.

Indigo.....how did you guess?
I hate angry birds though :)

It's clumsily written but I don't think they are trying to say parents cause autism, but that the autism can lead to children not interacting so much with parents. And if there was a targeted intervention to encourage parents to almost over interact with these young children before dx it might improve outcomes.
Don't agree that they are showing parents cause autism-which seems like what moondog was saying.

I have a week old DS. I talk to him constantly and even show him the sign for milk before many feeds. He probably can't even focus yet, let alone take in what I am doing. It wasn't planned but a consequence of how my parenting and communication has been augmented due to having DS.

I think a number of parents of children with ASD probably interact with their children in an OTT way anyway. How on earth coukd you control for that?