Saturday, 28 February 2015

A New Excuse for Parenting Failure?

 
Pathological Demand Avoidance.  Sounds like a "diagnosis" for "my kid won't do what he/she is told", right?  Like that "Attention Deficit Disorder" thing, that means "my kid can only pay attention to video games".
 
I'm betting we're going to start hearing a lot more about Pathological Demand Avoidance in the next few years.  I'm also betting we're going to hear a lot of snide remarks and outright sneers.  Probably for every mainstream article that gets published, there are going to be all kinds of comments about how things were "in my day", "before PDA", "when bad behaviour didn't have fancy labels".  Probably there will be all kinds of accusations about parents being let off the hook by getting a diagnosis that means their child can't help it.  A lot of people will suggest that PDA can be cured by "a good a$$ whooping".  And a lot of people are going to speculate and offer their best guess as to what used to happen to these kids with PDA before there was PDA.
 
Well, let me tell you what used to happen to "these kids". 
 
They got misdiagnosed.  They got treated as though they had something else wrong with them, usually several things, because none of the labels quite fit.  Only the management that usually worked for kids with those diagnoses didn't work, because they didn't have those things, but nobody knew what to do with them. 
 
They got put into residential schools for children with challenging behaviour.  Or taken from their families by social services because their siblings were at risk of harm from their violent outbursts.  Their families were torn apart.  Their parents' marriages fell apart under the constant strain of having a child that nobody knew what to do with.
 
Or they got excluded from school after school until they had nowhere to go, and one of their parents had to give up work and stay home to look after them. 
 
They became isolated, depressed, maybe suicidal, because they couldn't fit in and didn't know why.  They turned to self-harm. They regressed and retreated into stereotyped behaviours more commonly seen in Autism. 
 
Some of them got a diagnosis of Atypical Autism, which at least meant they could get some support, but still meant nobody understood them.  They had what kind of looked like autism, but "atypical", as in, they didn't even fit in with other people diagnosed with autism.  Others (probably depending on where they lived) got diagnoses of PDD-NOS - Pervasive Developmental Disorder Not Otherwise Specified.  One parent I knew had a paediatrician explain that diagnosis as being a medical term for "there's definitely something wrong but we have no idea what".  Diagnoses like that aren't very enlightening.  They don't really do much to help others understand how to help someone.
 
Undoubtedly some of those kids who had PDA before it was 'a thing' have a milder presentation.  They were able to live at home without damaging themselves, their home, or their family members too much, but couldn't handle school.  Failed, got kicked out or dropped out, or maybe held it together most of the time and got through, but with a heavy branding as the Bad Kid, the Troublemaker, the one that parents and teachers alike simply didn't know what to do with. 
 
You know what tends to happen to kids with milder learning and developmental disorders that go undiagnosed?  They tend to develop mental illness.  It's probably pretty hard not to get really severely depressed when you are always wrong, always bad, always unable to meet anyone's expectations, even your own, and you don't know why.  It's not surprising that people with untreated mental illness often turn to drugs to ease the very real pain.  It's also not really surprising that a majority of people in jails are thought to have learning disabilities.  Or that many of them end up being exploited in one way or another because their real vulnerability has been underestimated. How do you think those people on the fringes, the ones you might mentally write off as 'losers', get to where you see them as adults?  I'm not saying that everyone who can't hold down a job or maintain a relationship has PDA, but I bet some do. 
 
Other kids with PDA ended up in institutions, because nobody could believe that someone who could talk so well could have so little understanding of how the world works. 
 
It's hard to believe that someone who appears to be social and highly verbal can be autistic, and not necessarily mildly autistic.
 
PDA is a form of autism.  It is an Autism Spectrum Disorder.  It is real.  It always has been, even when it had no name.
 
Those sceptics will be right, in a way.  "These kids" have always existed.  Not in huge numbers, and not in the places those sceptics are thinking.  These aren't children who play up a bit to get attention, or who just can't get their homework done.  They're not the ones who miraculously no longer qualify for a diagnosis after their parents have done a parenting course. 
 
There always have been a subset of children - in special schools, residential placements, foster care, juvenile detention centres, or at home with a family who can't understand why their dream of happy family life turned out this way - who act like there is something very wrong with them, but who nobody can figure out.  I didn't spend a huge amount of time working before I had a family of my own, and don't have heaps of experience, but looking back, I can think of children I have known who very probably had PDA.  They would be teens and young adults now, still with PDA, but with less chance now of being integrated into the world around them.  We hear all the time how early intervention is the key.
 
All those grown-up kids with ruined lives that I have been describing started out somewhere.  Once upon a time, they were somebody's baby.  Probably a much-loved baby with besotted parents who looked and looked at their little sleeping faces with so much hope.  Bright little toddlers who walked early or late, who showed puzzling behaviour but also so much promise.  Preschoolers who ran excitedly into their classroom only to be handed back to their parents at going-home time with tales of injured playmates, broken toys, out-of-control behaviour.  Children who sat waiting for their friends to come to their birthday party only to have no-one come, driving home the dawning realization that no matter how much they want to be a part of the world around them, they just don't fit.
 
When a child's life is ruined, so is his family's.  How would it feel to be told that you child is ruined and it's all your fault?  That you had this one important job that almost everyone else in the world manages to at least scrape a passing grade on, and you failed? How do you think it feels to be the mother of "that child"?  Or the father, with little outlet for expressing how it feels to see all your hopes for your child slipping away, being smashed by their outbursts?  To spend years with the isolation that comes with having a child who is not like anyone else's child.  Many families have other children who are developmentally normal, but even that doesn't spare parents from being blamed for their child's behaviour.  Blamed by schools, other parents, family members, social workers, and broadly by society at large.  By ignorant people who comment anonymously on internet articles.
 
PDA is very real.  So is the damage that it wreaks on real peoples' lives when left unrecognized.  What's changing now is not "how kids these days are being raised".  What's changing is that now we have a name for something that has been crushing the lives of children and families, unseen by the world in general.  We can name it.  We can call it what it is.  In old stories there is often this belief that knowing a name gives power over that thing.  There can be some deep truths hidden in old stories.  When we give a thing like this a name, we have a handle on it.  We can begin to define its boundaries.  We can start to unravel the layers of where one diagnosis overlaps another.  And we can tell the person to whom the label is applied "it's ok, it's not you, it's This".
 
It's not a Get Out of Jail Free card.  Children with PDA still have to learn how to behave in a way that does not impinge on the rights of those around them, as we all do.  What having a diagnosis does for them is signpost how to help them achieve that.  Knowledge is power.  These children have a right to know why they struggle where others around them do not, and to learn to have power over their reactions to the world around them - in other words, to learn self-control. 
 
In giving them the label of Pathological Demand Avoidance Syndrome, we are not giving them or their parents an excuse. Nor are we making up something that isn't there.  The problem is very real, and is already there.  What we are doing is validating their experience of that problem and giving them a framework for understanding it. Diagnosing a common core of behaviour draws an outline around the behaviour and allows us to separate the behaviour from the person, and thus begin to understand the difficulties that underlie the behaviour.  Once we pinpoint the skills that are not developing as they normally do, we can address those skills, and begin handing that person the tools they need to get by in the world. 
 
Of course, there is the risk that when it is still new (to public awareness), a diagnostic label will be slapped all over anything that loosely resembles it.  Probably a few, very few, parents might reach for it when in fact it isn't there.  But is it worth pooh-poohing the diagnosis on their account?  I'm not great with expressions, but I kind of think "throwing the baby out with the bathwater" might apply here. 
 
Right now there are sweet, fresh little babes (probably already being labelled as 'colicky' or 'high-needs'), and beloved, perplexing little toddlers, and bright, intriguing, already-struggling young children who can be spared the sort of things that happened to kids like them in your day.  Isn't it great to think that these little ones now have hope?  If we can get them recognized and diagnosed sooner rather than later, we can help them find their step in the world.
 
 

4 comments:

  1. Just discovered your blog. I'm loving the content and the style. Thanks for writing!!

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  2. All I can say is Thank you. PDA needs writers like you !

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  3. What a fantastic article, I hope that people read this and are able to open their minds to the reality of living with PDA. It is such a misunderstood and dismissed condition, but being left undiagnosed quite simply destroys lives and leaves kids and their families fighting unfair labels that lead to breakdowns and suicide. Nobody would wish this on their own children and believe me that the stricter you are with these kids the worse things get - they do not respond to this and get `sorted out`, instead they have meltdowns and end up in hospital and are arrested, or end up in care.

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  4. This is a great article - and informative.
    My son is now 14 and we are STILL unsupported - The fact is at this moment in time - there is still much ignorance and lack of education (for the professionals) I had to educate the educational psychologists - The SENCO - Head teachers - teachers - the list goes on - and yet so little is really understood about this complex aspect of autism.

    I feel defeated - and am very concerned for my sons future.
    I live in Hertfordshire and there is absolutely no support (that is effective) in place for my son.

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