How NOT to be an autism parent

Happy New Year to all! I trust you’ve enjoyed the festive period and aren’t too dismayed by the month of self-flagellation we call January. Today, I’m going to talk about a subject close to my heart, one more grounded and personal than my last blog on the sorry state of the world at the moment.

I have five roles in life at which I attempt to excel. In no particular order, they are:

1) Writer
Without wanting to sound arrogant, this is my strongest suit. I may not sell nearly as many copies of my books as I’d like, but my readers have – in the main – been delighted with my work do far.
2) Husband
A work in progress. Ten years ago, I was a feckless fool who preferred a night out with the lads to an evening with my wonderful wife, but I’ve grown up now and learnt to appreciate domestic life.
3) Insurance advisor
Regarding the 9-5, it’s a resounding “meh” from this “insurance associate.” It pays the bills, but the world of perils, risks and insurable interest will never excite me.
4) Father to a neurologically-typical daughter
One of the easiest. At the risk of sounding flippant, caring for my daughter is relatively easy – at the moment. She’s only 7, though, so I have the teenage years to come…
5) Father to an autistic son
Compared to the rest, I suck at this one. Granted, I’m better than I used to be and, under the patient tutelage of my autism-expert wife, I plan to get better. Therefore, I will describe my failings, in the hope that others in my position might benefit. Below follows my second blog on autism: a masterclass in how NOT to be an autism parent.

taped to wall

I’m not this bad, though

 

Taking things personally

Our son, Max, is prone to physically violent outbursts caused by anxiety, which usually stems from routines being interrupted by unforeseen circumstances. My problem is that I often take these episodes of aggression personally, rather than accepting that they are merely symptoms of his anxiety. He doesn’t want to hurt his mum or me; he is suffering. Even reacting with an “ouch” can make him more distraught. One day, I will hopefully have the strength to silently accept the scratches, bites and blows every time he has a meltdown, not just sometimes.

Being selfish

We can all be guilty of selfishness – especially men (or so I’m told). And in my defence, I’ve rarely been self-centred by design. Yet when my son has been upset, I’ve too often focussed on the suffering he’s causing others, instead of the pain he’s suffering himself. When he’s having a meltdown, as is often the case with autistic individuals, he’s hurting both physically and mentally. It’s not a tantrum or trying to get his own way – he’s experiencing torment the rest of us can barely imagine.

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“Normal” brain activity vs autistic

Bemoaning the loss of the child I thought we’d have

For years, I railed against the injustice of my son’s genetic make-up. Why couldn’t I have a child I could have a conversation with? Take to Manchester United matches? Play football with at the park? Go for a pint with when he’s 18? Futile emotions, all of them. I’d have been better embracing the differences and enjoying my son’s quirks and uniqueness. But I’ve started to appreciate him more now, and we enjoy each other’s company much more.

max and daddy

Max and daddy

Living in the moment

A million Facebook memes will tell you to “live for the moment.” Sound advice though that may be for most, it doesn’t always follow for parents of a child with autism. Because some “moments” can be pretty traumatic. The obvious solution is to remember that every meltdown will eventually pass, but I have a tendency to become too immersed in each flashpoint, forgetting that respite or relief will always come – for both Max and us.

autism parents

Sweating the small stuff

My son sweats the small stuff like you wouldn’t believe. But he’s severely autistic and can’t help it. With a boy like mine, chaos, mess and objectionable routines are par for the course, and to try and impose order on his behaviour has proved a fruitless endeavour. There’s far less stress when we allow him to wreak havoc and tidy up afterwards, rather than following him around with a bin-bag. Fortunately, although he still has his moments, he’s become less manic over the last couple of years.

mess

Caring for myself

For too long, I vented in the wrong ways. I was, to my shame, prone to episodes of binge-drinking and I tested my family’s love on too many occasions. Nowadays, I use writing as therapy. Of course, this isn’t a viable method for everyone; however, when you feel like you’re in a war zone some days, you need a healthy way of escaping, and this can’t be found at the pub, the bookie’s, or in a giant tub of ice-cream. Not that having a drink or indulging in your vices every now and then is wrong per se, but when you’re hurting people it’s only going to end one way.

Accepting second best with provision

To be honest, this was more from ignorance than lack of initiative. We simply didn’t know how much support there is for families in our position. Over the last two years, we’ve been helped by charities, and two of their employees in particular have assisted us in all kinds of ways. It’s lamentable that the bodies who should assist – the NHS, local authorities and social services – are so financially and bureaucratically restricted, but that’s a discussion for another day.

 

Of course, Max’s happy and adorable personality (as described in a previous blog) makes all the above worthwhile. He’s a beautiful boy who is braver than anyone I know, and has enriched the lives of everyone who loves him.

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our handsome chap, Max

 

 

I’m far from being an expert as an autism daddy, and despite learning a lot, I doubt I’ll ever be the “finished article.” I am, however, keen to learn and spread awareness of autism spectrum disorders, hence the themes and characters found in my books and the charity donations I make every time someone purchases SUBNORMAL or SUPERNORMAL.

If you’ve found my ramblings interesting, consider signing up for my mailing list. And if you want to help children like Max – and enjoy a story with an unlikely hero – then buy both of my books for the combined price of a beer/coffee!