Friday 25 April 2014

Parenting outside of the 'norm' and challenging behaviour. #ThisIsAutism and PDA

Autism is everywhere, along with plenty of challenging behaviour. 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, or Asperger's Syndrome and others with ‘severe’ autism.
Rainbow (the Spectrum) as painted by Sasha aged 4
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 that a neighbour’s child also has a diagnosis, and one across the street, and one around the corner, and a few streets away... I spent a year working in a local charity (check out the amazing ADD-vance) 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 adjusted to 1 in 68. My thoughts are that autism is being recognised/diagnosed and understood more, rather than that statistic meaning more people are now 'getting it' (of course, you all know that you can't catch autism, but that you are born with it, right?!). It seems, however, as though only those who are directly involved with autism have any real understanding of it.

The difficulty is 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 reasons behind the behaviour and what may have already been tried at home or in school with those children.

Sophie was diagnosed with autism at the age of 2 and a half. We believe she has a certain sub-type of autism called PDA (Pathological Demand Avoidance). Some key symptoms of this are the strong need to be in control, and the high level of anxiety if doing something not of her own choosing. You can find a lot more information about this at Yes, this sounds like challenging behaviour, and yes, in some respects it is - but it's not the same as being intentionally 'naughty'. 

I do worry slightly about adding a new term (PDA) into the conversation and diluting any information already 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, and that only some of the traditional autism strategies work for Sophie (things like visual timetables help for example, but are still open to changes being made by Sophie if she doesn't like what is on the plan!).

PDA is a relatively newly discovered sub-type of autism and so sadly it is currently extremely difficult to come across practitioners who truly understand it or even diagnose. The research is there though - do look at the wonderful NORSACA and its Elizabeth Newson Centre for more information. It saddens me to hear people trying to dismiss this as bad parenting, or even on occasion as Munchausen Syndrome

I started writing my blog Steph's Two Girls to try and explain to others around us how and why 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. That is 'normal' parenting; more is to come in a future post about the use of this word, and language in the world of Special Needs generally. I can assure you that 'normal' parenting is a lot easier in most ways. 

Of course I do not believe I am the perfect parent, or that such a person exists. I may not always get it right, but I do teach right from wrong, and I'm proud to say that despite her difficulties, Sophie is growing up to be a polite and caring young girl. I am open to suggestions on parenting, but it's fair to say, I can't just 'make her' do most things; it simply doesn't work like that for her in the way it would for our eldest. We put a lot of effort into even getting out of the house for a simple trip to the playground on some days, but can maybe achieve a great family day out almost akin to that of a 'typical' family on others. The latter has taken a lot of practice and trial and error over the years though, and it's still like walking on eggshells constantly. I don't mind telling you it's exhausting.

For plenty of other families, the challenging behaviour which we experience is magnified at certain times. Sophie is at least constant all day - as in, she challenges the teachers almost as much as she does us! The upside of that is that people tend to believe our experiences, although it doesn't stop some from offering opinions on how to 'parent' better. 

Other families experience terrible violence from their children at the end of the school day as all the frustration at being crammed into a conformist system spills out. It's often described as being in a pressure cooker - the child sits simmering from 9 to 3, struggling with the anxiety of having to follow instructions from teachers, or trying to cope with all the sensory distractions which could be anything from flickering or buzzing lightbulbs to the other children's screeches. Once out of that environment, the child literally explodes (many recommend reading The Explosive Child by Ross Greene) and the families take the full force. It's so true, I think, that you generally hurt the ones you love. For many, being back in comfortable surroundings means they can really 'let it all out'. For Sophie, we see her de-stress when she first gets home by stripping down to her underwear, eating the same comfort late lunch every day, and spending some time watching video clips that she is familiar with. None of this hurts her, or us, it's just not what you would expect a 'typical' child to do.

We are lucky that Sophie is not violent - although I've often wondered if that is because we started using the correct strategies for her so early on. Others may say we are not being strict enough with her, or that we let her 'rule the roost' - but who's to say whose way is actually the correct one?! Supernanny is welcome to try but I'd not be hanging around to witness it. Every family manages as best they can with what they have, and as far as our home life goes we think we're doing an OK balancing act. I feel for those families though who are not shown or given all the resources which could help them manage their day-to-day lives in a happier way. That's why I believe strongly in trying to help spread the word about PDA and reaching out to other families who may be at their wits end.

So please, please, if you see a child 'misbehaving', consider the option that you are actually seeing a true meltdown, and don't judge. Maybe point them in the direction of this PDA information booklet. Offer help if you can, but not 'normal' parenting advice. It's probably been tried already.

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