I need to be very careful about the frame of mind I am in when I write a personal story... especially about autism.
Last time we went away as a family I had LOADS to say about how much I - frankly - hate the disease sometimes. Yep, that piece, aptly titled 'Ten Things I Hate About Autism' was definitely shooting from the hip and raw as.
You can read that piece here.
Same with this piece, in the current edition of Australian Family magazine, about raising a child with autism. [Here is the cover, scroll down for more]:
Turns out, there is no easy way to talk about autism... unless you want to be inauthentic about it all.
Turns out, there is no easy way to talk about autism... unless you want to be inauthentic about it all.
Here is an excerpt about my experiences with autism. Yours may be different, of course.
Life with Autism
Here’s the thing about autism – it’s like an uninvited guest you have to pander to, put up with, be a yes-person to, and find a way to get along with, even though nobody said they could stay at your home, eat your food, and mooch around all day in their comfy clothes, while infiltrating every element of your life.
Autism can be very rude, disrespectful, arrogant, and flippant. It can change its mind at a moment’s notice and be utterly unapologetic about it. Autism can ruin travel plans, destroy holidays, have no respect for your ‘date night’. And when you say in exasperation, ‘It’s all about you!’, it looks at you like you’re an alien, and replies, ‘Yeah… and? Problem?’
If it sounds dramatic, maybe you aren’t fully acquainted with this beast called Autism. It takes over every area of your life. In every way. And never says ‘sorry’ about the collateral damage.
Autism is defined as a neurodevelopmental disorder beginning at birth, or shortly after. The symptoms have been described as impairments involving delay and deviance in social and communication development, along with restricted interests and repetitive behaviours.
The term Autism Spectrum Disorders (ASD) covers diagnostic labels which include: Autistic Disorder, High Functioning Autism, Asperger Syndrome, and Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS).
Early intervention
Make no mistake: as passionate as I am about communicating about autism and its negatives, I am equally passionate about early intervention and finding out about every single thing I can do. That’s because my son was diagnosed with mild autism spectrum disorder at age two (although I just ‘knew’ at age 1 and a half).
I am also very much about highlighting the positives, and talking about the very excellent aspects of autism. Yes, excellent ones. There are things about autism that bring about the very best in those who have this diagnosis, as well as in those around them, especially those the mums and dads of special needs kids – if you have a child with autism, you know what I’m talking about. You find a strength you never knew you had.
No, there is nothing half-hearted about my approach to autism. We have a love-hate relationship that infiltrates every fibre of my being. When we hate each other, we really, really despise each other. But when we love each other… nobody else exists in that moment. It’s an intoxicating love, the kind of love where you feel glad to know each other, and are grateful to be exposed to its intricacies and quirks; because you know you must live together in as much harmony as you can muster. After all, you’re stuck together for the rest of your lives.
When a child is very young and you suspect autism, it’s a critically important time for early intervention, which can powerfully shift the child's future life course. So, finding out as much as you can about each other early on makes complete sense. The more you know about its foibles – and the sooner you know – the faster you can learn to get along and identify the triggers of autistic behaviour.
The argument to encourage early intervention in autism centres around harnessing the "plasticity", or ability to change a young child’s brain, in the hope that the path of their neurological development can be redirected away from autism.
Having lived this for almost three years I can attest that early intervention has had a huge impact on my son’s progress and development. With the various therapies, and my own learning which I then apply to our interactions together, well… it has made a huge difference to all our lives.
To continue reading, click here.here.
What is your experience with your autistic son, daughter, niece, nephew, friend's child, or child's school friend? Please share.
What is your experience with your autistic son, daughter, niece, nephew, friend's child, or child's school friend? Please share.
Hi Josie,
ReplyDeleteI enjoyed reading your article, I picked up a copy from my kids daycare centre.
One point that did however raise my eyebrow was that the great part 'is the incredibly generous government funding' of $12,000.
My 2.5yr old boy receives ABA intervention. Intensive, hell yes, 25hrs+ a week, but hand in hand with the fantastic results we are already seeing is the sheer Expense of it! $12,000 covers a sniff of the cost.
We have already spent half of this money in a matter of months! But as anyone knows whatever the intervention a parent chooses, intensity is KEY so that's the path we willingly take.
I know many who receive such intensive intervention are left with little choice but to dip into their Super, re-mortgage their house, in order to fund what the government does not come close to covering.
Sure I agree the $12,000 gives families the access to different therapies, absolutely... it's a kick start, but with 1 in 88 children now diagnosed with Autism in Australia each year, the Government still to needs to come to the party in a very big way.
Sarah.