Monday 13 May 2013

Autism Parenting Guilt #1: Meltdowns, fear and love

When I announced my pregnancy seven years ago, friends and relatives were quick to tell us about the sleepless nights we would have to endure, the poopy nappies we'd encounter, the always-with-us worry, the drain on our finances and other such delights awaiting us.  We shared jokes about smells, stains and extreme fatigue.  We were nervous and felt unready for what was to come, but eager to meet our boy.

When our son was born, he was our first and only; we had no other child to compare him to. Looking back, there were many small signs of his autism, even from an early age but at that time we had no way of knowing.  His repetitive behaviour, his extremely fussy eating, his slow speech development, his extreme physicality, were all put down to being a toddler, or a boy, or just quirks of nature.  We knew that something was off (too many clues to list here; I'll do a blog about the diagnosis process another day) but the health visitor, the doctor, our friends and relations all kept assuring us that he seemed fine.

Our first big clue that something was Definitely Not Right was when he grew out of toddler tantrums and then a few months later started having them again, with knobs on (we later learned these were different because they were autistic meltdowns ). Screaming, kicking, spitting, biting, clawing at our faces, pinching, hitting, hair pulling, head butting, we got the lot.  He would hit himself too, and throw things.  In addition to the meltdowns, it got to the point where he would attack for no apparent reason, almost as if he were conducting an experiment in cause and effect.  They were the darkest times, the hardest time to love him.  I tried to explain to him how upset it made us, how wrong it was to hurt people but he seemed untouched by our words.  He only really spoke to us when he wanted something, and escaped out of our cuddles, wiping off our kisses, not even looking us in the eye.

When your child does not appear to understand or feel love, that's when you feel the full weight of Autism Parenting Guilt.  You blame yourself for passing on faulty genes, for shouting too often, for lacking effective discipline, for being too smothering, for not spending enough time cuddling.  You blame yourself as a person and everything you did as a parent.  You feel helpless, unable to break through; you worry about your child's future, the sort of life he will have, the person he will become.

There is a happy ending to this.  Our boy grew out of the meltdowns as his speech developed. There was a gradual lessening of intensity and frequency.  He learned to endure cuddles and give out kisses.  Not often, but when they come they are treasured. He shows us love his way - by playing with us, dressing us up, including us in his make believe world.  We have relaxed into a new type of relationship.  It happened over time, with patience and understanding.  

Allow me to state the obvious: being the parent of an autistic child is not easy.  You have no idea the amount of work that goes into just getting through the day with the minimum amount of incident. Parents of autistic children face the prospect of "failing" to do it "right", ie like everyone else does it, every day, in every situation.  When you throw in the fundamental questions of character, such as Does My Child Love Me?, you enter a whole new sphere of self-doubt and pain.  We were lucky; our son had developed as he has grown older.  Some children never develop speech, or remain aggressive, whatever their parents or carers do.


So when you see a parent of an autistic child looking slightly glum, or frazzled at the edges, or they walk right past you without even noticing you, just remember that they are walking through the day carrying the inescapable burden of Autism Parenting Guilt.  Be kind, tell them they're doing a great job.  It will make their day, if not their week.


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