This week (March 25th – April 2nd) is National Autism Week, which aims to raise awareness and understanding of the challenges facing those with Autism and their families.
It’s a cause particularly close to our heart, but we know that for many of us, it’s still not well known or understood.
For those of a certain age, if we knew someone diagnosed Autistic they were often non-verbal or seemed really very different indeed. Now though, we know that the ‘rain man’ stereotype simply isn’t accurate.
We sat down with ‘inspir-age-ional’ Anne Ross, founder of ADD-Vance, a Herts based charity supporting families with ADHD and Autism, to bust some myths and get advice on how we can support those diagnosed to reach their potential and get the compassion they need.
‘I First set up ADD-Vance in 1996, when I was 41. I had three boys and the youngest didn’t seem to ‘fit’ anywhere. In those days there was so little knowledge and understanding and we had a huge battle with him being called ‘naughty’ and ‘destructive’ but mother’s intuition told me it was much more than that.
He was eventually diagnosed, but there was no one to turn to for advice; these were the days before social media remember, even before Google or the internet was being widely used. I set up a group from my kitchen table and myself and other parents used to get together to work out strategies and share knowledge gleaned from all the reading and research we were doing.
Our son found school hugely problematic (or rather, school found his needs incredibly problematic) and it wasn’t until he went as a day boarder to a specialist autism school that things really started to improve for our family. Finally, we were able to breathe a little through the ups and downs and I began to consider a future for myself.
I decided I wanted to fight to make sure as few families as could went through what we had, and I enrolled at university in 1999 to study Psychology whilst also completing my counselling training at college. It wasn’t easy though and I had to endure my own struggles personally because of the trauma we’d been through before I would graduate in 2004.
Despite this ADD-Vance had gone from strength to strength. I’d met a kindred spirit, Pamela Reitemeier and we decided it was time to take ADD-Vance to a more formal footing. We applied for funding and there was a ‘breakthrough moment’, where we went ‘what do we want’ to really grow our reach.
I had realised through the sessions at home that parents themselves were the very best form of support for one another, although they often didn’t have the self-esteem to believe that themselves.
I decided to invite a very specific few, whom I knew were especially passionate and knowledgeable to undergo professional coaching training, allowing them to support other parents.
From there we blossomed. A six-week parenting course followed, a proper office and eventually even additional help with the administration.
Today, we’re a team of coaches and trainers, working with both parents and professionals but whilst there is so much more knowledge available, the fight is very far from done.
I don’t believe in punishment for a condition isn’t being supported.
A special needs child is seven times more likely to be excluded than a neuro-typical one, and the government has slashed funding and access to special schools. The mood in education is ‘zero tolerance’ which is fine in principle – but for what? Zero tolerance for our children’s very real needs which aren’t being met? Because it is ignoring those needs that creates the behaviour schools struggle to cope with.
I know first hand that it’s the support – or lack of it – in those early years, that leads to outcomes, good and bad in your twenties, thirties and beyond. I also know that it’s the choice of all of us – to judge and condemn or support and try to understand that enables parents to stand up and shine or fall apart and struggle to cope.
Don’t get me wrong – I’m not against an old-fashioned education. I believe that a move back towards structured learning, tables in rows and far fewer classroom distractions provides an easier setting for children struggling with attention and noise. But I don’t believe in punishment for a condition isn’t being supported.
I’d like to see exclusions banned entirely for primary children. Research shows they’re not effective they simply label someone who’s had no chance to be anything different yet, changing the pathway of their whole lives, before they can even begin to live it.
I’ve met amazing parents and phenomenal young people in my career, who continue to fight for the best for their young people
A school that knows it must accept a child for it’s whole early education must also learn to provide support effectively to curb the behaviour it finds so challenging.
I also get lots of grandparents confused or even disbelieving in the diagnosis – in our day it really didn’t exist. To those people I say, ‘life has changed’. We understand so much more now, so behaviour that we may have struggled with ourselves as parents, or even that our parents may have struggled with in us no longer has to be suppressed and hidden, leading to lifelong insecurities.
Our children can have the chance to live a life that suits them, not the other way around, so learn as much as possible and try and get on board to support your children.
I’ve met amazing parents and phenomenal young people in my career, who continue to fight for the best for their young people. It’s been a privilege.
Contact ADD-Vance via the website or learn more about Autism and ADHD here