Today is World Autism Awareness Day and I thought now would be a good time to let you know what autism and Pathological Demand Avoidance (PDA) means for our family, and how life is for our 6 year old girl diagnosed with autism.
Today is also being classed as #OnesieWednesday by the National Autistic Society to highlight autism and spread awareness, so here's my pic of my two superheroes!
Having worked for a great local charity who support families living with autism and ADHD in our county (ADD-vance, in Herts, check them out as they offer so much help), I can tell you a lot about all the different ways which autism presents in children. I've met, and spoken with, a lot of parents (and adults) who are on this journey. Each child is unique, and yet they all share some features. They belong to a 'club', and this club is different to the group that typically developing children fall into.
Autism is a lifelong disability which affects the way people communicate and relate to others around them. It is a Spectrum - and by that we mean that each person has diffculties in different areas of life, to differing extents. For example, some are super-bright but are not actually verbal (see the wonderful Carly Fleischmann), whilst others are of average intelligence but don't understand social rules. Others struggle with an overload of sensory inputs, and some cannot break the rules or tell a lie. One person with autism could be all of these things, and more, whilst another may only have difficulty in one specific area.
The American Psychiatric Association recently decided that all types of autism should just be classed as Autistic Spectrum Disorder (ASD). Previously a diagnosis would be given as either autistic disorder, Asperger's disorder or Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS, catchy, huh?!). I think we may see a move to call this Autistic Spectrum Condition in the future (ASC) as many believe that 'disorder' doesn't sound very nice.
Previously, in this country, Great Ormond Street would give a diagnosis as follows:
Classic Autism (difficulties with learning)
Asperger's Syndrome (average or higher intelligence)
High Functioning Autism (HFA; late onset of language, IQ in or above 'normal' range)
Atypical Autism (similar to Classic Autism but no difficulties associated with special interests, sensory interests or flexibility)
You can probably tell that those individual diagnoses cover a wide range of people, and I can understand why people become confused about what autism is, or how you can help people with autism. I think the biggest factor linking them all is the lack of social understanding - a huge part of life which 'typically developing' children are not verbally taught, but which they somehow 'pick up' and become aware of. That still amazes me everyday, that the majority of people just 'get' why you shouldn't stand so close to someone, or call out whenever you feel like it.
We've never queried Sophie's diagnosis of autism. Saying that, I've not yet met another parent who has a child who sounds exactly like our youngest.
But I have found a closer description of her characteristics than the standard autism explanation.
Our girl had a language delay, she obsessively resists demands, she appears sociable on the surface but lacks depth in her understanding, she has excessive mood swings, switching suddenly (often described as Jekyll and Hyde), and she is very comfortable with role play. All of these characteristics point to a lesser known sub-type of autism called PDA (Pathological Demand Avoidance, another mouthful).You can read much more about this on the www.pdasociety.org.uk website.
It may seem like she is just not doing what she's told through choice, and it may appear as if I just didn't spend enough time teaching her right from wrong, but that's not the case. I'm grateful that we have a gorgeous older daughter who proves I was capable of 'good parenting'. The thing with our youngest, and with all PDA children, is that she 'can't help won't'. Demands completely overwhelm her and lead to further anxiety and an inability to pull herself back from that.
Our eldest daughter and I had a great discussion last night. We talked about stress, and how if we are rushing to get out of the house I still somehow manage to stay completely calm and happy with Sophie, acting as if we are not at all late and about to miss the start of school. That is not how I feel on the inside; I want to rush her along as much as I do our eldest. I've learnt though, that rushing or shouting not only achieves nothing, but it's very detrimental and culminates in total meltdown and inability to calm down for a long time. Tillt came up with a great analogy; for typically developing children, their emotions are like the Jumping Jack ride at Paulton's Park. They take a long time to build up to that top level of high anxiety/upset, but once up there they can quickly blow over and then drop back down to the acceptable level again. With Sophie, it's more like the Ice Blast ride at Blackpool Pleasure Beach (used to be called the PlayStation back in my day!), where her emotions go from 0-10 in superfast time, and once up there it's a long process to calm her back down to the ground.
Not being in control is likely to send Sophie's emotions sky-rocketing, as is insisting she carries out demands/follows instructions. This doesn't mean that we let her 'get away with' anything, or that we haven't taught her right from wrong. Funnily enough, our youngest is rarely intentionally naughty - if she does something wrong, it's often not with the intent of being naughty, but more likely because she's forgotten what she shouldn't do (scribbling on the floor is a great example of this - how many 6 year olds would do this and not realise the consequences? Toddlers of two, three or four maybe....).
This why we spend much of our lives feeling as if we are walking on eggshells. It's exhausting, and yet we are the lucky ones. There are over 1,400
members of the PDA Facebook group (#PDAarmy!) who share how this condition affects
their lives every day, and it can make for emotional reading. This is
real life, this is how autism is for them. We can relate to that too. Our girl is generally fun, curious and happy as long as she is not being forced to do something not of her own choosing, and she melts down/withdraws (noisily!) rather than turning to violence. We are lucky to have her in our lives.
There is more info on PDA on the National Autistic Society's webpage.
Please share my post so that others may understand more. Even if just one more person is enlightened or understands a little more how different autism can be, that could help our girl's path in life to be a little easier. Education is key; why shouldn't Autism be part of the Curriuclum I wonder?
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