A report published today (26.10.16) in The Lancet suggests that children who receive Preschool Autism Communication Trial (PACT) intervention strategies between the ages of 2 and 5 years can show significant improvements in their autism symptoms and communication.  The intervention is carried out at home, by parents who themselves have received training from professionals in social communication intervention.  Parents and children attended 12 therapy sessions over 6 months, where both children’s and parents’communication and interactions  were observed and strategies suggested as to how these could be improved, with daily, planned focus activity sessions at home.  The media have reported on this, using the term ‘super-parenting’, suggesting that ‘good enough’ is not enough when it comes to parenting autistic children.

So, as a parent of an autistic child, how does this make me feel?

On one hand, it’s fantastic that there may be some hope for newly-diagnosed children and their families.  If they can begin the intervention training early enough, there’s a chance their children’s social skills could be improved, making a huge difference to their lives.  But that’s as long as a programme is rolled out nationally and is available to all.  And as long as your child is diagnosed early, which, given the length of time it takes many families to get a diagnosis, is hard.  Just getting an initial appointment with a paediatrician or speech and language therapist can take months. Tink is over four and a half now, so it will be too late for us, but I’m sure some of the strategies used can be useful for any family, no matter how old the child, and it would be great if information about this could be given to parents at diagnosis, instead of being left largely to drift alone in a sea of helplessness.

On the other hand, I feel a bit lot put out.  Not by the report, but the way in which the media have interpreted it; ‘super-parenting’ is not a helpful descriptor.  I’m pretty sure most parents of children with special needs feel that they are trying to be super parents most days.  But sometimes, ‘good enough’ is enough and no amount of trying harder will help, especially if your child is especially anxious, over-stimulated or just will not do as you ask as they feel under pressure to perform when demands are made of them.  Being ‘good enough’ is something I am just coming to terms with, after so long of trying to be more than that, when actually the extra effort/heartache/anxiety/stress doesn’t necessarily pay off.

From what I can tell, the PACT intervention involves making small tweaks and adjustments to what we parents are already doing when playing and communicating with our children.  And this is probably something all parents could do with knowing, especially in this day and age, when we’re all glued to our smartphones, tablets and laptops (including the children!) and the art of play and conversation is beginning to be lost.  To suggest that we ‘autism parents’ need to go above and beyond assumes that we don’t already do that on a daily basis and feels a bit of a kick in the teeth, when really, we could all do with some parenting help to do the best for our children.

Parents of children with special needs already feel enough guilt, for one reason or another.  We really don’t need the pressure of needing to become a ‘super-parent’ too.

Spectrum Sunday
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Super-parenting? Because yes, we need more guilt!
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10 thoughts on “Super-parenting? Because yes, we need more guilt!

  • October 26, 2016 at 6:29 pm
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    Great post.
    I agree. I feel all the input put in place early does have a significant impact , as it does with even an NT child ( a child may count to 10 aged 2 if parents sat and taught them)
    With autism its a lot harder and more specific in what we need to do as parents.
    Of course it won’t cure autism, and I don’t think its correct saying doing I aged 2 is when it will make an improvement. I think any age it will work, after all autism doesn’t stop a child learning.
    What I didn’t like about the original news paper report was that it failed to mention that if a child also has learning difficulties ( which with autism about 50% do to some degree) it may affect how well this ‘Super parenting’ will work.
    This could make a parent feel bad if it doesn’t work on their child then.
    Early intervention is great in all learning disabilities, the article in the paper just needs wording a bit differently!

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  • October 27, 2016 at 5:27 pm
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    I agree! I knew there was “something” about DC before he was a year old. Doctor after Doctor and finally he was diagnosed at 4 years old (1994)! Knowing what I know now, I don’t understand what took so long and knowing what I know know I don’t understand why it was not recognized. I mean, knowing nothing about it myself other than Tommy on St Elsewhere, I was the one who had to bring it up! He was in early intervention but if there is no diagnosis, they are really just winging it.

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  • October 27, 2016 at 11:39 pm
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    Really they should have called it what it is teaching parent how to respond like a professional play therapist .

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  • October 30, 2016 at 7:11 pm
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    Such a shame that they chose the headline “super parenting” for the article, as I think that was so misleading. What I found interesting was the amount of time that they spent with parents to given them the techniques – if only that level of support was available to all parents.

    Hopefully the research on the impact it can make will lead to more support for parents to provide the strategies discussed.

    #spectrumsunday

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  • October 30, 2016 at 9:01 pm
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    I wrote something very similar. It’s intensive training which can work, depending on whether you get a diagnosis! Where I live it’s a two year wait to be seen and then you are sent off with a pat on your back and a handful of leaflets. Ridiculous. And it was the media spin that was awful. And I also disagreed with the term ‘good enough’. Have you ever met a SN parent that was ‘good enough’?!

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  • October 31, 2016 at 7:04 am
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    I totally agree with you. The sensationalist nature of journalism means that they are of course going to go for these eye catching headlines. The actual article and research is promising but as you said – who will it make a difference for in the long run? Will it be another postcode lottery? #SpectrumSunday

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  • November 5, 2016 at 8:23 am
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    I totally agree with you on this one Kel. We are all doing the best we can with the knowledge and tools at our disposal. We already second guess and worry about every decision we make as special needs parents – we really don’t need more guilt about things that may be outside our control.

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  • November 9, 2016 at 4:45 pm
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    I don’t know an autism parent that isn’t super already. We do everything for our kids… indeed what parent wouldn’t? Great post, please join us again on #spectrumsunday

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    • November 9, 2016 at 5:09 pm
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      Absolutely! Thanks for having me 🙂

      Reply

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