A mother writes
Shifting Ground blogs about the experience of having children with autistic spectrum conditions. Frank le Duc reports
Shifting Ground is the pen name of a blogger on the Daily Toddler website. She has written about the trials and tribulations of having children with autistic spectrum conditions (ASC). Here are some excerpts, giving a flavour of her family life: “We have three wonderful children, unique as all children are, and two of them come with some rather particular characteristics. Recently I found this diagram (the DANDA neuro-diversity map) and broke into relieved laughter.
“Here it was, the information map I wish I’d had ten years ago. The one I could have taken to the four hospitals, two mental health services and scores of appointments our eldest child was referred to over the years to make sense of something no one seemed able to join up. The jog that might have nudged them into considering his unusual traits and behaviours weren’t something he was ‘going to grow out of’, wasn’t him ‘being difficult’ or because ‘he’s trying to get attention’ but fell within the range of neuro-diversity.
“His medical conditions were well treated we were left with a nebulous explanation of ‘BESD’ (behavioural, emotional and social difficulties) being told at one point ‘not even mum and dad’s cuddles could take away the pain as he hasn’t attached properly but don’t worry, we think you’re part of the 10 per cent of children for whom it’s caused by discomfort not neglect’.
“In those days I thanked them profusely for not thinking we were the cause of his problems then went home and cried, heartbroken at being told as a mother I hadn’t been able to comfort my son and in sudden fear someone had thought we hadn’t loved him enough. Now I campaign against this way of thinking. “I wonder why on earth this diagram isn’t in every doctor’s surgery, hospital, school and child development centre.
Maybe workers are given a copy on day one of their training but sadly I doubt it or so many parents wouldn’t be struggling to get their children’s needs recognised and adequately supported in schools and health services. “This is a journey of understanding for parents and practitioners and I wish I could say it was straightforward. Thankfully for some it is but it needs to be made easier for all families.
“For us it’s been more an epic crawl on our hands and knees through illnesses, clinics, hospitals and insinuations about our parenting in the now epidemic need to assume emotional abuse, lack of ‘attachment’ or even fabricated and induced illness and work backwards from there. I’d breastfed on demand for over a year, my boobs in those days being located in the upper region of my body.
“The wonderful thing is that, with the right intervention at the right time, ASC children don’t have to suffer with mental health illnesses such as anxiety or depression. With the right adjustments and accommodations in mainstream schools ASC children can be supported to make better sense of life and develop the social skills necessary to reach their potential.
“It took ten years for us to understand what we were dealing with and that the autism spectrum is just a different kind of sane. Our son is now a happy, healthy teenager, thriving socially at school thanks to us taking control and this only started when we got an accurate diagnosis.”
