Today a report from the charity Austica revealed that premature deaths amongst autistic people are at disturbing levels, with certain groups with the condition dying a staggering 30 years younger than the general population.
Perhaps even more distressing are the high rates of suicide amongst autistic people, with those possessing no learning difficulties being nine times more likely to die from suicide when compared to the rest of the population.
As a mother of a recently diagnosed autistic child, this report makes frightening reading, and at this point I can’t help wondering how much stress and mental health issues might have contributed to these untimely deaths. The stress of being expected to act “normal” and conform in a neuro-typical world.
At age 6, my son has already suffered an unacceptable level of stress for my liking. Particularly in the school environment.
The stress of trying and failing to understand and fit in with his peers. The stress of the busy and noisy classroom, which does not sit well with his sensory processing disorder. The stress of sitting still for prolonged periods of time when his hyposensitive areas require constant movement to satisfy his sensory craving. The stress of the rapid fire pace at which he is required to learn, and the high volume of work he is required to complete on a daily basis – all the more challenging for a child with thought processing and short term memory issues. And yet despite his difficulties, he is currently expected to just “get on with it” and knuckle down like every other normal child. To learn in precisely the same way and to churn out the same outstanding results.
The stress he, as a young boy, is under feels a catastrophic failure.
I know he is a bright boy. I have his autism assessment report to prove it:
… to name but a few areas.
And yet, just a few days after receiving this report, I was sat in his teacher’s classroom being told that if he didn’t “buck up” in his Maths and English (handwriting) he would not meet the national standards required at the end of the year.
I listened to them tell me that despite my son obviously knowing the answers to almost every maths question, they are not impressed by his inability to write down his calculations in his workbook. The fact he uses dots to show his addition, when they only permit it for multiplication or division. The fact that when he has to sit a timed test he will not have time to draw dots.
I listened to them tell me that his handwriting is sloppy, that he rushes and unless he has a teaching assistant sat next to him, they are wasting their time. That he needs to start consistently using capital letters, finger spaces, commas, full stops and the correct flicks/leads to join all his letters. The insinuation was that he was slacking.
But in taking this simplistic and neuro-typical view, I fear they are missing the many subtle yet significant difficulties my son possesses and in doing so are placing even more stress on him and missing the opportunity to realise his true potential.
How would you deal with learning to write if you suffered from thought processing delay and short term memory problems? How would you deal with remembering and processing multiple instructions to include capital letters, full stops, commas, flicks, leads, finger spaces (and next week exclamation marks!) if you found it difficult to remember single instructions? And how easy would you find this requirement if your need for constant sensory input meant you struggled to sit still for more than a few seconds at a time and you found the noise of your peers, the lights and sounds of the classroom distracting and even painful? Wouldn’t you rush? Would you find it easy?
They wanted to send him home with more homework until he improves. They want to keep him in at playtimes to practice until he meets the required standards.
I said “no”.
My 6 year old boy doesn’t need MORE homework. He needs more space and time to be a child. More space to unwind from the stress and pressure of a school environment that pushes him to achieve so much so fast . And more support at school from people who understand his differences and needs.
So having won the battle to have him diagnosed, here is where my next fight begins. The fight for a suitable education, for his right to reach his potential, for his right to be understood, supported and accepted for who he is, not for who they want him to be.
I understand that his diagnosis is just a few months old, and that his school and everyone who know him need time and help to adjust. But I’m impatient for change. I’m impatient to provide my son the happiest and healthiest future possible. One where he never ever becomes part of a terrifying statistic.
Today I just had to write. Because today was so rare.
It was just so right. And I’m buzzing.
The last few weeks have been shitty. So so shitty at home.
Since my biggest boy has gone back to school, his behaviour has again deteriorated dramatically at home. His tolerance for the smallest of requests has plummeted and we have once more become his literal and metaphorical punch bag.
The evenings and weekends have been tough. I’ve screamed myself hoarse out of sheer frustration at times as our previous strategies have failed and meltdowns have again become an everyday event.
I know I’ve messed up now and then and been a frightful grump, but it’s hard to think clearly when chaos crowds your judgement. The screaming, the throwing, the punching, the growling… it drives me to distraction.
But today was different.
Today was such fun.
The weather was on our side and we took full advantage.
A trip to Hyde Park. One of my favourite hang outs.
Sure, coaxing the big little man to get ready was a challenge. He couldn’t help but avoid. But I was ready with ideas, and he can rarely resist a race. So off we ran.
Once we arrived at the park, the under 3’s play area was our first destination. A treat for the littlest boy, with big bro as guardian and playmate.
Next, the pirate ship. Sun and sand.
Then over to the other side – ice creams and ice lollies for the journey.
A race along the Serpentine…..
A wander through the trees……
A roll on the grass
and an adventure in the playground.
Smiles and laughter from my eldest and squeals of joy from the youngest.
Calm contentment filled my soul.
I felt alive, I felt free, I felt like a family.
Of course the meltdowns resurfaced at bedtime. It was inevitable. But they pale into insignificance when compared to those 4 precious hours where we all got it right.
And for that, I feel good.
I am mum to Dinky who is awesome- she also has been diagnosed with Autistic Spectrum Disorder-PDA, ADHD and Sensory integration difficulties
Not a journalist or a writer, just a dad to two amazing children. Oh, and I love cheese.
There are always two sides to every story. By @Pols80 and @adadcalledspen
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