Tuesday, 20 November 2012

Depression and a Child with Autism

If I had a pound for every time I've read or heard that "only special parents are given special children" I'd be rich, and if anyone were ever crazy enough to say it to my face I don't think I'd be responsible for my actions.  "Special" children are not given to "special" parents.  I am not somehow miraculously transformed into a saintly earth mother just because my son has atypical autism.  Having a child that screams obscenities at me and anyone else, lashes out at his siblings (and me on occasion) and throws a temper tantrum every time anyone says "no" to him or his game isn't going his way does not make me a better person.  What it does make me is exhausted, depressed, worn down and defeated.  It makes me feel like a dreadful parent and a worthless human being.  It makes me short-tempered and some days I shout at my poor, miserable son who is making my life a misery along with his own.

Don't get me wrong I'm not blaming my son for his effect on my mental health.  His condition is no more his fault than my depression is my fault; if anything, he is less to blame than me as he was born with a lifelong condition, whereas mine has developed gradually over time and I could perhaps have changed things had I understood what was happening earlier.  I love my son dearly and it breaks my heart that he is so unhappy and there doesn't seem to be anything I can do to change that right now, no matter how hard I try.  He sees every reprimand, no matter how tactfully or gently worded, as a personal attack and cannot understand why everyone is "always getting on at him".  His particular form of autism is probably a condition called pathological demand avoidance syndrome, which has only been recognised and described relatively recently.  As its name suggests, people with this condition find it very difficult to cope with demands made on them and suffer extreme anxiety when they are not in control of a situation.

My son is thirteen now, an age at which most boys find life a bit difficult to cope with.  He will be having hormonal surges and at the same time he is trying to find out where he fits in the world and how far he can push against authority.  Add to these normal changes the difficulties in social understanding and panic when confronted by everyday demands brought by PDA and it's no wonder he is unhappy.  He cannot understand that his older brother and sister have more freedom, not just because they are older, but also because they do not have his lack of social understanding or lack of awareness of danger.

I would literally tear off my right arm if it meant my son would not find life so very hard.  I would give my life for him to be happy and to be able to live life like other people do.  Everyone has difficulties in their life; there is no such thing as an easy ride, whatever it may look like from the outside; but his difficulties mean that he doesn't even understand what it is he doesn't understand.  He is confused when his behaviour is challenged, he cannot understand that if he hits someone it's not their fault, they didn't make him do it and he could choose to react differently to whatever it was that upset him.

Parenting a child like my son is like walking through a minefield.  There is no map, no special sixth sense to work out where the mines are.  All I can do is try my best, every minute of every day; all the while knowing that my best is not good enough, I cannot protect him, I cannot teach him how to behave more in line with social norms and I cannot stop him being confused, panicked and angry every time I try to stop him shouting at the top of his voice, throwing things or lashing out at those around him.  Strategies to help children like my son include trying to avoid making direct demands and instead trying to use more indirect and negotiative approaches to try to manage their behaviour.  This is all very well when trying to get him to put his shoes on or come and eat his tea but when I'm trying to get him to stop hitting someone or otherwise endangering himself or others there is not time for an indirect approach.  In such situations all I can do is try to limit the fallout and then try to cope with his overloaded emotions.

My son's behaviour is not his fault and is a direct result of a condition he was born with and that he cannot control so I cannot react in the way I would were he a neuro-typical child.  Getting angry with him or shouting at him only exacerbates his panic and anxiety and his behaviour will further deteriorate accordingly.  I am no saint, nor am I a perfect mother so sometimes I do both get angry and shout, other times I manage to suppress my own feelings and deal with him calmly.  Either way, I am left with emotions and feelings I am unable to process in a healthy way.  I am either struggling with suppressed anger, sadness, shock and pain or I'm struggling with guilt, anger, sadness, shock and pain.  No amount of understanding of his condition can make the shock and pain less every time he swears at me, hits me or calls me an idiot, a fool, a stupid woman with contempt dripping from his tone.  Nothing can take away my pain at his mental pain when he is hitting himself in the head, saying he's stupid and wants to die.

Suppression of my feelings is a guaranteed trigger for my depression and after one of my son's outbursts it can take anything from an hour or so to several days for me to recover, although a feature of his condition means he can switch mood in an instant.  I hate myself for being unable to make life better for him and for his brother and sister, who suffer greatly as a result of his behaviour, even though I know intellectually that it's not my fault.  I hate myself for letting myself become depressed as a result of his behaviour when I know he can't help how he is.  I hate his condition, which seems to be taking more and more of my loving, funny, smart boy away from me every day.  I love my son and I wish I could help him instead of being so useless and worthless.  My son may be a "special" child but I am just an ordinary mother trying my best, when my best can never be good enough.

For more information on Pathological Demand Avoidance Syndrome, please see the relevant National Autistic Society website pages.

2 comments:

  1. It's been suggested that my son may have PDA too, it's very hard xx

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