“One ought to hold on to one’s heart; for if one lets it go, one soon loses control of the head too.”
I chanced upon an autism article this week with the title ‘Why Behaviour is Never Bad.’ I didn’t read it. My guess is that it is an article about the causes and purposes of behaviour in children (or adults) with autism. It will outline strategies that can be used to help understand and adjust behaviour that is unsuitable, dangerous or harmful. I expect it will touch on or mirror the principles of Applied Behavioural Analysis (ABA) and will suggest considering the ABC of behavioural situations (Antecedents, Behaviour, Consequences). I know this because I’ve read it all many, many times. It will suggest practical, logical steps towards understanding and helping your child. I know that if I read it, I will feel like a bad parent.
Sometimes the books and articles don’t help. Sometimes it is impossible to distance yourself emotionally from the intensely difficult and challenging behaviour that is presented at home. Most of the time I am able to make sure it doesn’t get to me too much. I keep control over my heart, and that helps me keep control over my head. But we’ve had an escalation of difficult behaviour recently. That short sentence doesn’t really begin to describe the relentless screaming fits, the declarations of “I hate you”, the stamping, throwing and door slamming, the refusals, the running off, the arguments or the constant belligerence. My wife is at the end of her tether and I have been returning home to tears after work. She said something to me this week that has me worried. She said, “We can barely control him. When he’s older, we will have no control over him.”
It does feel like we’re losing our grip on things at the moment. The truth is that, rather than being out of control, the problem is that my son is in control. Or rather, his behaviour is a result of his attempts, desires and need to be in control.
And as my son’s thirst for control grows, and his means of getting it become better developed, I feel myself losing control more and more. I’ve lost it with him a few times recently. Yelling at him never helps and I’m always left feeling guilty. But feeling guilty for shouting is nothing compared to the guilt I feel at my growing resentment towards the way he is sometimes. My unconditional love for my boy gets tangled up with unwanted feelings, like weeds that I can suppress but keep finding their way up through the cracks. At those times, I don’t want him to eat his breakfast while he has his hands down the front of his pants. I don’t want him to make that screeching noise all of the bloody time. I don’t want him to constantly chew his clothes, making them unusable. I don’t want to be called an idiot by my five year old son or to be told “You’re going to die!” I don’t want a screaming fit because we have run out of waffles. Be patient, say the books. Be consistent, realistic and controlled. And I am. Most of the time. But I’m also tired and sad, worried and drained. I don’t want to feel this resentment towards my son. I don’t want to wake up feeling like this.
My wife thinks that our son demonstrates many of the characteristics of PDA, or Pathological Demand Avoidance. Wikipedia describes this as “a sub type of autism characterized by an avoidance of the ordinary demands of life.” Identified in the 1980s by UK child psychologist Elizabeth Newson, PDA has the following defining criteria:
- Passive early history in the first year, avoiding ordinary demands and missing milestones
- Continuing to avoid demands, panic attacks if demands are escalated
- Surface sociability, but apparent lack of sense of social identity
- Lability of mood and impulsive
- Comfortable in role play and pretending
- Language delay, seemingly the result of passivity
- Obsessive behavior
- Neurological signs (awkwardness, similar to autism spectrum disorders)
Some, though not all of these, apply to my son. When he’s screaming “NO!” because his mum’s asked him to move his feet while she vacuums (his mess), it’s not hard to conclude that he’s a pathologically awkward bugger (that’s not quite the terminology used by Newson). His refusal to stop what he is doing, or to comply with things that are clearly for his benefit, like getting in the car to go to a play centre, suggest that he simply cannot cope with being asked or told what to do. He has to flip out because it’s wired into his brain.
Maybe there’s something in it, but the last thing my son needs is another label, unless it brings with it lots more support or intervention, which is unlikely. Besides, I think the umbrella term of autism pretty much has his condition and needs covered. PDA is, I suspect, part and parcel of autism, but can also be distinct from autism and exclude some of the other aspects of ASD. Worth reading on this subject is the blog ‘Living with Michael’.
I typed “autism + bad behaviour” into a search engine, in an attempt to find information that might help with this week’s post. Worryingly, high amongst the top hits that I got was a site that asked, “Is autism an excuse for bad behaviour?” This time I did read the article, and was annoyed (though not surprised) to find some very ignorant and intolerant views being expressed. It is obviously very easy to blame parents for not doing anything about their (autistic) child’s behaviour or, it would appear, for unleashing their monstrous children on the general public in the first place. From the replies on the site’s thread, all too many people find it easy to ignore the fact that autism is the reason for the challenging behaviour, not a way of excusing it.
And then I realised that I’d pretty much let myself forget this recently. For all the books I’ve read, posts I’ve written and time spent learning about my boy, I managed to lose sight of the root of these problems. Perhaps it is because he is high functioning, and at this end of the spectrum there are plenty of aspects of his character that would be considered ‘normal’. Sometimes it is easy to think that his behaviour comes from some other place than his various sensory needs, his processing difficulties and his problems with adapting.
It’s also apparent to me that despite being further down the road with my son, there are still plenty of bumps and obstacles in the way. I feel like we’ve veered off course quite dramatically recently. My son is at the wheel and I need to regain control of where we are heading.
And without labouring the metaphor too much, I need to remember to go slowly. I will not let our lives become a car crash.For anyone who recognises some of the things I have written about this week, there is some useful advice here. You can also read more about PDA here.