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An autism specialist advised me today that we must “honour the autism” in a review meeting. We were having a long drawn out conversation about my son and an impending behavioural plan in the school. I was fully launched into a bit of a rant about why they were rewarding a tantrum on carpet time by letting him play with his beloved Lego.

“…but we must honour the autism” she looks at me searchingly. I open and close my mouth.

That shut me up. I am stumped.

I finally rally after a very long awkward pause. Six eyes penetrating. I’m not sure I want to do that I say hesitantly. A million things whirring around in my head. I know it sounds awful somehow but I buoy myself on with cries of “it’s the truth, the woman is being honest (me) at least even though she feels judged. I would do anything to honour my son but no I don’t think I want to honour the autism.

Its made me think a lot. It’s made me quite cross. Then it made me sad. I put on a brave face but cried all the way home.

What the hell is this autism that we attach to a person? I didn’t want it attached to my beloved son and yes I would like to unattach it if I could but apparently it’s a part of him and it’s not going away. Yes I hear you… it’s not going away.

Do I love it or fight it? Is it my son, part of my son or inflicted upon my son?

Yes I know that me not loving this autism in my son is offensive to those living with its label. I hate that maybe enough to shut up for good except something’s instinctively not bloody ok about it for me. Maybe I am shallow and narcissitic and cannot bear to contemplate my sons life being different from mine, I can see that as a possibility. I’ve been guilty many a time of worse human idealising and frankly crazy behaviour so believe me I know it’s a strong possibility and I could happily accept to move forward but it’s a hard pill to swallow for a parent. It brings fear for the future and anxiety about the past and the worst – failure in the present. Failure to meet my son where he is at.

Actually I can only talk for myself and not much has happened before in my life that makes me question life so much as this journey. Not a harrowing suffering death of a parent, overcoming an eating disorder, birthing three children, businesses launching and failing blah blah. I am very aware that a lot of people are very sure of exactly what they are talking about. It’s pretty amazing just how sure I assure you. I just wish I could choose one of them to believe in and relinquish my captaincy of this ship out at sea.

Just when I think I might be getting somewhere – forming an opinion, a direction, sure that we are doing the right thing, something is helping, is working – I get dumped out at bloody sea again and have to try and navigate myself back to the safe shores of sanity…