I’m facing a steep learning curve at the moment, relearning how to parent a neurotypical child. Well, I assume he is neurotypical. He has a few quirks (don’t we all?) He hates hand driers and having his teeth brushed. He throws an almighty tantrum (he’s two, that’s his modus operandum). Overall though he copes just fine with whatever life throws at him so I reckon he’s pretty NT. Anyway, I digress, my point is this; My first child (The Stranger) has a form of autism called pathological demand avoidance. In practical terms this means that the demands of everyday life can cause him profound anxiety, stimulating a ‘fight or flight’ reaction. Basically stuff that you or I cope with easily like say, having to queue for an ice cream can result in an extreme meltdown reaction (way over and above the ‘normal’ impatience
and frustration). He also struggles to cope with change or when he finds that reality doesn’t match his expectations, again with very extreme reactions.
Anyway, as a first time parent he was my guide, my teacher. For years we had no idea that he was particularly different from other children yet my experiences with him were shaping my beliefs about children and parenting which in turn colours how I perceive the world around me and the judgements I make. He added colour to the lenses with which I see not just him and myself but all children and all parents. He was a volatile toddler and could explode in an instant over seemingly innocuous things eg a biscuit breaking or a sandwich being cut into the wrong shape. I learnt to tread carefully and gently to avoid setting him off, to micromanage his day and keep things predictable and not too overwhelming. I learnt to perceive children as both volatile and fragile at the same time.
He taught me to believe that children are inherently good and want to do well. He is very innocent in many ways, unskilled in subtle manipulation and very open. When he struggled there was always a reason and it became my job to help him find a solution. Telling him what do do or not do met with resistance and anxiety so I learned to limit direct demands. He taught me new ways to be a parent.
My youngest boy is different in so many ways. I find myself constantly surprised by his ability to cope and to take things in his stride. Don’t get me wrong. Yesterday he had the mother of all tantrums and lay down across a busy pedestrian bridge, kicking and screaming because he wanted to walk by himself without reins. Thankfully it was brief, after the initial fury abated he listened to me and relaxed with a hug. If only ASD related meltdowns could be calmed so easily. At the same age The Stranger’s meltdowns would last for ages and at times he was beside himself and inconsolable.
The Stranger also has sensory issues and as a result a very limited diet of ‘safe foods’. It is not simply a matter of “he will eat if he is hungry” or “he will eat if you keep offering it”. He has aversions to certain textures and smells, the mere sight of fruit can make him vomit. He taught me to relax my expectations around food and mealtimes, to pick my battles and to play the long game. Instead of 5 Veggies a day I celebrate if we manage 2 a day (the same 2) and I’ll settle for 1 or even none on a bad day. The more I relaxed about food the better his diet became. My youngest is very different, if I keep serving a food he initially rejects he often comes to like it after a few tastes. If he sees me eat a new food it reassures him that it is safe. This is a very new experience for me. The Stranger does not instinctively look to others for reassurance, somehow he just doesn’t have that ability. I think this is one of the big reasons why ASD is often confused with “attachment disorder”. Parent- child pairs can seem to an observer to lack that instinctual bond. Anyway, I digress again.
I often find myself pondering that if my neurotypical toddler had been my first child then he would have shaped my beliefs and as a result my opinions and judgments about parenting so differently. He might have taught me that good parenting begets good behaviour, that tantrums will end quickest if calmly ignored and that picky eating is easily cured by calmly continuing to serve rejected foods week after week. I imagine I might have seen a picky eater at a friends house eating plain pasta and cucumber or an overwhelmed child kicking and screaming and shaken my head thinking ‘I wouldn’t allow that under my roof’.
Our core beliefs are shaped by other factors too; the media, our own childhood experiences, shared experiences with friends and family for example. If we had a very strict upbringing ourselves it can be particularly hard to change that pattern and be more flexible with our own children even if we know that it is what they need for whatever reason. Several of my own family have told me that they just wouldn’t have believed that pathological demand avoidance is real thing had they not witnessed us first hand, struggling to cope with The Stranger. Media is also a big one, the tone of what we watch or read can really shape our beliefs and thoughts. Today Twitter and Facebook are an increasingly powerful source of information and opinion. I suppose it could be compared to the old ‘war time propaganda machine’ and ‘rumour mill’ which had such a powerful effect on the beliefs (and as a result morale) of the people.
‘Children’s’ behaviour’ is currently a popular topic for television programmes in the UK for example; “Super-nanny” and “My Violent Child”. Generally they follow this format;
1) Show clips of child exhibiting shocking behaviour, usually running rings around a weak and ineffective parent.
2) Bring in “parenting expert” or “super teacher” type to introduce firm, consistent discipline. At this stage the parent is generally shamed and freely admits responsibility for the child’s ‘issues’.
3) Demonstrate (short term at least) that the intervention has been a great success. The parents then express gratitude at having been ‘saved’.
4) The cameras go away and everybody lives happily ever after (presumably).
The social media response to these programmes typically reinforces the attitude of blaming the parents and the decline in strict discipline in our society.
When a child presents with a behavioural problem the first thought always seems to be parenting. Well intentioned friends and family often suggest whatever parenting strategies they found most successful. Gossip at the school gates frequently focuses on which child has done or said what and whose fault it is. Judgment is often cast over the child’s home situation, or for parenting which is either not strict enough or responsive enough in the mind of the observer. Often the first response from professionals is to offer (or insist on) a general parenting course. As the parent of a challenging child you have to first prove that your parenting is not to blame then perhaps if you tick the right boxes move on to assessment for a neurodevelopmental disorder or for other forms of professional help. In the case of a child with extra difficulties the use of inappropriate general parenting strategies can add to the stress of a family already struggling and in pain.
Channel four’s “Born a Naughty?” is a breath of fresh air (apart from the name but I suppose it could have been much worse so I’m going to let that go). I realise that plenty of assessing and vetting will have taken place before filming but taking it at face value I love the idea of curious and open minded clinicians meeting a family, taking a full and objective history, ordering appropriate assessments and then carefully considering and reaching a diagnosis BEFORE recommending tailored interventions.
I am excited and grateful to “Born Naughty?” both for raising public awareness of PDA and for taking a different tack from the usual ‘one size fits all’ approach. It is refreshing to see a television programme changing the language we use to describe challenging kids from “temper tantrum” and “manipulative” to “meltdown” and “anxiety”, from “naughty” to “struggling”. I hope this awareness will filter into the general public’s consciousness and that the programme will continue to increase the general publics’ awareness of neurodevelopmental disorders like ASD and PDA. I hope to see a gradual shift in the way the general public perceive challenging behaviour and the families dealing with it. It would be fantastic if more people could change their lenses and see that so many children who show challenging behaviour often have a hidden difficulty and not a flawed character or a dysfunctional family.
Now a days if I see a child acting out or behaving badly my first thought is usually that there is some underlying problem, some factor “beneath the ice berg”. Sometimes I am wrong. Sometimes a perfectly capable, balanced child will choose to behave badly. I do genuinely believe that for the most part kids will do well when they can but I also realise that I am biased. The lenses which I see the world through have been tinted by my experiences and by the life I am living. There is value I think in being aware of my lenses, my inner beliefs and the way they colour my perception of the things I see. There is enormous value in being able to remove those lenses and to view the world around us objectively with curiosity and an open heart.