Adjusting individually and highlighting PDA with @stephc007 #ThisIsAutism

By | April 10, 2014

It was inevitable after a people-filled and busy day yesterday that today would be a day of highs and lows, as T and D adjust and regulate.

Individually T and D would have enjoyed a quieter day at home, put them together with their extremely different emotional and intellectual abilities and there have been clashes.

With days like today, I find it difficult to “referee” to quickly move from the strategies that work best for D, to the ones that suit T.

Sometimes I feel like I’ve failed and one, or both, will have a “moment”.

With D, any “moment” is instantaneous, both in its arrival and passing, she’s like a whirlwind in that respect and then – like a lightswitch – her mood will lighten. With T, it’s as if he’s on a slow burner, there’s an angry but quiet withdrawal and it will take absolutely ages for him to talk about it and then there’s a long recovery period.

It took a long time for Hubbie and I as T’s parents to make the decision to commence the process which led to a diagnosis of high functioning autism nearly a year ago. It was something that we had thought for years, but considered that he seemed to be “coping”, at least as far as school was concerned. Over the last couple of years, it became apparent that his traits were becoming more pronounced and what with secondary school looming, it was apparent that unless he had a “label” (a diagnosis), he would stand no chance of receiving any additional support if it was required.

For T, he took his diagnosis extremely well and he refers to himself as high functioning, it’s a “label” he (fortunately) seems comfortable with (his current primary school initially ignored it).

Even if the very pronounced intellectual and emotional variances between himself and D arise – as they have today.

This Is Autism

I’m running nightly guest posts throughout April for Autism Awareness month, please contact me either via twitter or email at autismmumma at aol dot com if you’d like to have an autism-related post featured.

Tonight’s guest post comes from @stephc007, who blogs over at stephstwogirls.co.uk. When I first signed on with twitter, I wanted to reach out to other autism parents, in particular those with girls (as D had only been diagnosed then) and Steph was one of the first.

Over to Steph:

“Autism is everywhere. It’s all around us. It’s a ‘Spectrum’ – this means that it affects people to varying degrees. Some are called ‘mildly’ autistic, some are diagnosed with ‘high-functioning’ autism and others with ‘severe’ autism.

I knew pretty much nothing about autism before our younger daughter was diagnosed with it. I’d seen the film Rain Man, and the portrayal of one type of person with autism by Dustin Hoffman. At the time I probably thought that was what all autistic people are like. I say probably, as I didn’t actually give it much thought back then.

Roll on 20+ years and I don’t very often get chance to watch films these days. I’m not sure which recent films, if any, include stories of children or adults with autism. And yet, these individuals are all around us. After our daughter’s diagnosis, we discovered the next door neighbour’s child also has a diagnosis, and a girl across the street, and one around the corner, and a few streets away… I spent a year working in a local charity which helps families with children diagnosed with ADHD and Autism, and I conversed with hundreds of families. It’s not a rare occurrence; 1 in 88 are said to have autism and recently in America this figure has now been redressed to 1 in 68. It seems, however, as though only those who are directly involved with it have any understanding of autism.

The difficulty is of course, that every person with autism is an individual. There is no ‘one size fits all’ with regards to strategies. I think the message to get out there is that it’s important to speak to anyone you meet and find out what matters to them, and how they like to be treated – surely this is the case for everyone, typically developing or otherwise? It saddens me that there seems to be so much ‘judging’ in the world; too many opinionated people who believe that their way is the only right way. Or who jump to the conclusion that it’s ‘bad parenting’ before they take a moment to consider the behaviour and what may have already been tried at home or in school with those children.

We believe that our girl has a certain sub-type of autism called PDA (Pathological Demand Avoidance). Symptoms of this are the strong need to be in control, and the high level of anxiety if doing something not of her choosing. On the one hand, I don’t really want to be adding a new term into the conversation and diluting any information that is given around the word ‘autism’. However we also feel (having had 4 years of practice now) that the strategies given for PDA are the ones which work on a day-to-day basis for her.

I started writing my blog Steph’s Two Girls to try and explain to others around us how our girl’s behaviour was different. I’m grateful for having the experience of already bringing up another child who does respond to traditional reward and consequence type parenting methods, and who does soak up social rules like most of us, without having to be taught them directly. The more understanding I can spread around autism and PDA, the easier life will be for our little girl – but it still won’t be easy. We have accepted that, we just need as many other people as possible to help and accept our girl as she is.”

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4 Comments

Stephs Two Girls on 10th April 2014 at 10:30 pm.

Thanks lovely – I so get the comment about being a referee; had a day like that on Monday, right at the start of the holidays!! All has improved since then though so there’s hope for you 🙂 x

Reply

Jeannette on 17th April 2014 at 2:37 pm.

Thanks Steph, hope your holidays are going well, referee skills needed yesterday but (ssssh) today are seems okay 🙂

Reply

rebecca beesley on 26th April 2014 at 9:45 pm.

Steph does a brilliant job of raising awareness! Hers was one of the very first Autism blogs I read and found it a great source of support. x

Reply

Jeannette on 30th April 2014 at 9:13 pm.

So agree x

Reply

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