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Deborah Hill Cone

Deborah Hill Cone is a Herald columnist

Deborah Hill Cone: The day my little boy left 'quirky' behind

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Photo / Thinkstock
Photo / Thinkstock

A day I will always remember. A wintry Friday. A normal day. The day school camp ended, the day the pest exterminator came to deal with our rat infestation, the day I drank Earl Grey tea at Bambina. Also the day our son was officially diagnosed as being autistic.

Our autistic son. Our son, aged six, who suffers from Autism Spectrum Disorder. Our son who could be the somewhat more trendy sounding Aspie, except Aspergers Syndrome no longer exists as a diagnostic category, and anyway the doctor said he probably wasn't "mild" enough even if it did.

The doctor wore a jaunty bow tie, somewhat misleadingly, as it turned out. He was austere as a taxman as he set out our son's deficiencies - lack of eye contact, verbal expression limited, difficulties with socialisation, all the ways he ticked the wrong boxes on a very long questionnaire.

I listened quietly to him telling me the diagnosis, and then hated myself for plaintively blurting out: "But he's also a really great kid!"

Oh don't be a git, Deborah. Why do you feel the need to justify your son's character to a stranger? I suppose the doctor does this all day every day - the latest stats say one in 88 children is autistic - that's a lot of patients.

After seeing me he will go home and put his bow tie away with all his other bow ties in his curated bow tie collection: for him it's just another day at the clinic. Not to us, though. As the doctor talks I'm just trying to breathe. It's okay, breathe, it's okay, breathe. Our son is still our same beautiful boy.

Afterwards I go home and let him do his favourite things - sit in nothing but his undies ("Clothes are uncomfortable mum.") and play Minecraft ("The zombie skeletons are getting the ballistic squid").

Meanwhile, I drink a lake of wine and try to work out why I'm not more Zen about all this. I talk to his Dad - being separated doesn't come into it at times like this because we are going through this together and trying to do the best for our boy. The diagnosis hardly comes as a surprise to either of us. We've read enough about it to know that he would probably satisfy the diagnosis for autism. Yet hearing the words and getting the forms is still a shock.

Used to be, when I watched other neurotypical kids doing regular stuff like eating normal food, riding bikes, going on the monkey bars - all things my son will not or cannot do - it really hurt.

I felt sad at feeling an outcast. Even in someone like me who purports not to care about social norms, the desire to fit in goes deep. But over the years I thought I'd reached a point of acceptance that our son was different.

His father and I told ourselves this diagnosis was just the next step. It would be helpful when it comes to dealing with the school and other parents - giving a framework and tools and vocabulary to help other people understand him and help him.

Yet when it happened - getting the brutal edict that your child is not normal - it still feels scary.

Before June 6 our son was just a bit unusual. I was fond of the word "quirky". For a long time we both resisted getting him assessed because we feared that having a label would be self-fulfilling prophecy. But at some point we realised that we needed an official diagnosis - the piece of paper - so he could get the help he needs at school.

So the trauma of him being diagnosed is more about managing my own expectations; letting go of the script I had written for a hypothetical 'normal' son and accepting and loving the son that we have.

I tell myself I need to get over the insult to my brattish parental ego. This is not about me. It is about our son. And he is making progress at school now there's recognition from some wonderful teachers that he needs extra help. He got a certificate at assembly this term. He was so proud. He told me "It was for taking responsibility mum."

He is just starting out in life - he has a whole lifetime of possibilities ahead of him. That makes me conflicted. I want to help him, but I also don't want his potential limited by a label, a syndrome, a stigma. I don't want him to be defined by this one day, 6 June 2014.

He might be autistic but he is still our beautiful boy.

- NZ Herald

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