By Seana Smith, co-author of the Australian Autism Handbook, Edition 1
What is it like to parent a child with autism, you ask? How long have you got?
It’s like trying to steer a small yacht in a massive tossing sea. There are unexpected steep descents and often you almost get washed overboard by rushing waves.
It’s ‘a varied and
There are periods of calm when the sun breaks through the clouds and you and all the family are safe and secure, sometimes jubilant, occasionally tranquil. Then it’s back to battening down the hatches as another storm descends. You need to use all your skills and expertise to ride this one out. But it passes and you all sail on.
Excuse the extended sailing metaphor, but really, saying ‘it has its ups and downs’ just doesn’t explain clearly or sharply enough the reality of bringing up a child or children on the spectrum.
Whilst every child is different, and every parent too, I do not think many in the autism community would disagree with the description of autism as being ‘a marathon not a sprint.’
My son on the spectrum is the eldest of four children. His siblings are neurotypical enough to have no diagnosis. Whilst all four of the kids have been very demanding (and also very delightful) in their own ways, I would be a big fat liar if I didn’t say clearly that our son on the spectrum has been much, much harder than all three others combined.
I often think it all would have been easier if he hadn’t been the eldest, if we’d had some sort of introduction to parenthood without the autism complications first. Who knows?
I do know that everything we learned about children and development, behaviour and emotions, made us better parents for the younger children than we would have been without autism.
Parenting in the early years
The early experiences for us were all about sleeplessness and hyperactivity, both very physically gruelling. Then we had the mental and emotional distress of realising that our son was not developing the way his peers were in that agonising pre-diagnosis period.
The early intervention years were hard for their time and financial demands. Ah, but they were glorious too especially when verbal and other breakthroughs were eventually made. Such progress wasn’t expected, but it turns out we just hadn’t known or been shown how to teach him.
And suddenly with diagnosis and early intervention came a team. We were no longer alone but surrounded by people who knew what they were doing, experts who saw our son as the dear little individual he was.
The school years
Preschool and school years had emotional upsets that led to a lot of teeth grinding and tears. But there were also the most wonderful and uplifting times as we saw him start to socialise and play sport. The calibre of some of his teachers was remarkable.
High school years were hard on the ears as our son’s special interest became music, heavy metal music. But what a great passion to have!
Our son’s learning issues were significant but he didn’t care as he thumped his drums and practised his guitar. Playing music and sport with friends became more important than academic achievement.
Life after school
Post-school years were quite tough for us all. There were too many changes and not enough structure. But a very good social enterprise has taken our son under their wing, mentored him and helped him find meaningful work. This has been vital for his well being and a huge relief for us.
Each family’s journey is vastly different. If you have a highly intelligent child who has lots of social issues then your experience of bringing him or her up will look nothing like ours on the surface.
However, if you dig a little you’ll find all of our experiences do have similarities. All of us who parent a child on the spectrum benefit enormously, gigantically and vastly from having a team around us.
Yes, we parents become experts in our own children. But when we can also share their care with other experts, our lives have improved no end.
So, what’s next?
Our son is almost 22 now and our experience of parenting him is far from over. We are no longer parenting a child on the spectrum, but still very much parenting a young person who requires more support than normal.
We expect him to be dependent on us to greater and lesser degrees for the rest of our lives, and in a very different way to the other three children.
There are unexpected upsides to this. We strongly suspect that our son may be there for us at times when we need him. The other children may fly far and wide but our eldest will be closer to us, we expect.
That may well prove a blessing when we are older as he has a very kind heart, plus many skills and strengths.
If you’re reading this as a parent of a young child, perhaps newly diagnosed, please know that the road ahead is tough. But there is help and support for you.
Life is much better with a team and a community, and there are many parents who have gone before you. We understand and we can help.
Seana Smith is a Scottish-born writer, blogger, autism parent and co-author of the first edition of the ‘Australian Autism Handbook’.
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