If someone had told me, when my youngest son, Eddie, was first diagnosed as autistic in 2019, that his neurodiversity may turn out to be a blessing, I’m not sure I would have believed it.
I remember the first time the ‘A’ word was mentioned when he was just a toddler in nursery. He’d had a few developmental delays and we were thinking of referring him to a speech therapist. I knew he was quite different to his boisterous older brother but I wasn’t especially worried.
He was much quieter and more attached to me than anyone else but each child is unique, I thought. Yes, his behaviour and speech could be somewhat repetitive but I was sure he would develop in his own time.
So I was deeply upset by the suggestion that he may be on the autism spectrum. My only experience of autism, like millions of other people who had grown up in the 1980s and 90s, was the fictional Rainman, an extreme portrayal of an almost non-verbal autistic man with exceptional savant abilities (which actually only represents a very small number of autistic people).
It wasn’t really until Eddie started school that things became difficult. He is also visually impaired and wore an eye patch which meant he became so tired trying to look at the blackboard, he would often fall asleep in class. I was called in frequently to pick him up and concerns were raised about his unregulated behaviour and meltdowns.
The World Health Organisation estimates that around one in 100 children are autistic but waiting times to get a diagnosis can vary hugely depending on where you happen to live in the world. The number of referrals for autism increased from 93,000 to just over 125,000 in the UK, where we are, between October 2021 and July 2022, according to NHS figures.
It took us three years to get a diagnosis for Eddie by which time we’d moved schools. Everything felt quite frightening and daunting. I knew so little about autism and what to expect so I threw myself into learning as much about it as possible. I ordered books, went to events and workshops and listened to podcasts. I discovered an online community of parents who were also navigating a similar journey.
I have come to realise over the years, however, that there are many silver linings that come with having an autistic child. I don’t call it ASD (autism spectrum disorder) because it’s not a disorder, it’s who my son is. Unique. Amazing.
I learn something new from him every day. He is completely honest about everything and would never lie, for starters. He doesn’t have a manipulative bone in his body and I always know exactly where I stand with him. He is loyal and loving to a fault and, contrary to lots of generalisations about autistic people, very affectionate at times.
Eddie has a completely unique and fascinating perspective on the world. He hears and sees things I miss – patterns in the sky, the difference between one robin and the other and he puts me to shame on the Lego building front. He comes out with things which really make me laugh. ‘I thought life was hard but then I put roller skates on and it got even harder,’ he said earnestly. ‘Now I’ve taken them off, life feels easy again.’
He recently described a forest school he goes to three afternoons a week as a place which helps ‘quench the fire’ within him. He has a wicked sense of humour and loves music. We sometimes watch Ed Sheeran and Harry Styles videos and dance around the kitchen.
Unfortunately, the outside world doesn’t always see the rainbow within Eddie. He has been on half days at school since October after one major meltdown in the canteen which left him feeling too anxious to return to a classroom of 30 children. He’s been taught in isolation on a reduced timetable since then. It’s technically unlawful but when the school said they could no longer meet his increasingly complex needs, we began what would turn into a battle with our local authority (LA).
Eddie has an education health care plan (EHCP) which means the local authority have a legal duty to provide a suitable education for him until he is 25. They don’t always adhere to this though. We had to fight and appeal to get his EHCP, then to get him additional support at school and, most recently, to try and get him a place at a school that can meet his needs.
As his mum, I have to advocate for him in a world which doesn’t accept him for who he is. We were so pleased when he was offered a place at a local autism specialist school with brilliant facilities last year but it’s taken almost months of hounding the local authority, speaking to legal advisers and trying to navigate the SEND (Special Educational Needs and Disabilities) minefield to get his place secured.
He has shown me an inner strength I didn’t know I had. I’ve gone from being someone who actively avoids confrontation to realising I have to challenge everything which doesn’t work in Eddie’s favour. The repercussions of not doing so would mean he would be marginalised for being autistic, as he already has been at school. This is, of course, blatant discrimination, or ableism as it is sometimes called, but it’s all too prevalent.
That’s why it’s so important for him to learn in an environment where he is accepted for who he is. I’ve realised I am meant to be his mum and that a big part of my job is to speak up on his behalf. Being his mum is a privilege and I wouldn’t change him for the world but I sometimes wish I could change the world for him.
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