Updated: Nov 19, 2020
A personal journey
When my son was diagnosed under the DSM4 with Asperger’s (now Autism), ADHD and sensory processing, we were in complete shock. It was the day our world stood still. To us, it felt like it came out of nowhere. It was halfway through kindergarten and we were unprepared.
Stunned, we asked each other if the diagnosis was correct - maybe the pediatrician wasn’t as good as everyone said. Autism and ADHD are so over-diagnosed, aren’t they?
We had no experience with autism, we only had the overexaggerated pop culture version.
Our son was affectionate, in fact overly so. He had toilet trained himself at 2, swam without a floaty at 2, and was climbing over fences at 18 months. Our son was intense, sure, but I was the oldest of 5 girls and everyone was saying it’s just boys. Our friends affectionately called him “Just J” - there’s a boy going crazy and running away or throwing a tantrum haha that’s just J.
My husband, whilst having the same morals, ideals of children and behaviour, had completely different ways of dealing with it. This was a parenting issue caused by our very different upbringings and how we dealt with stress. I read everything I could. I needed to feel in control, my husband denied their neurodiversity and set out to “parent” the children he envisioned, not the children he had.
I was confused and alone. My eldest child had also now been diagnosed after many years of living under the radar. Both my children are very different sensory wise and what worked for one didn’t work for the other. One was an introvert and one an extrovert. I was bombarded with advice from every direction, even from strangers in supermarkets. Some of it was well-intentioned but most without any foundation at all.
Then the merry-go-round began with a system that focuses on therapy, changing them and moulding them into what others think is socially acceptable. It is a system of compliance and conformity, and only supports the the theory that difference is bad.
I joined every Facebook group I could find. There were hundreds of them. Some of them are the vilest, most degrading pity parties I have ever attended. But amongst them all was a parent who had stood where I had and had found the pot of gold at the end of the Rainbow. I am eternally grateful that on that day, I listened to her message and it changed our lives.
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Seek out Autistic voices, learn from lived experience and find your people.
I had listened early on enough so that I never viewed Autism through the medical model of disability. This view tells you that your child is broken and less than. This model will fill you with despair and can drag you down to the darkest places. We view it through the social model whereby the focus is on the changes, or adjustments, to set our children up for success. This model demands that disabled children and adults are seen as individuals and our views taken on board.
It is natural to grieve for a life that you had planned out, but do it in private, not in front of your children and not on social media in front of the world. Your child will get their perception of their identity from you. How you see your child is how others will treat them. They will one day read that article where you disclosed very personal details that I daresay parents of Neurotypical kids don’t post. The world can be cruel and the information is forever.
What did work for us was open and honest communication about their Neurodiversity. They are proud of who they are and have every right to be so. They don't hide who they are and they should not be expected to.
Realising the value of the mantra of "All behaviour is communication". Inclue the voice in whateve form that may take in all aspects, after all your child is a key stake holder. Some of the biggest teaching moments for me has been through non-verbal communication. Learning to recgonise the little nuances that each child has, can speak much louder than words. Sometimes in life the things that are not verbally communicated are the most important.
Really listening and even in some cases letting go of the control takes some getting used to. And due to our own individual needs there are times when no one listens to anyone. It is a skill we are constantly working on. We get it right sometimes, and other times we don’t . We just get up the next day and try again.
Our children have developed some beautiful friendships. We supported them by seeking out Autistic social groups. They DO exist. And there, your children can meet people who will accept them as they are . Never underestimate the value of meeting like minded peers.
Is it always easy, no, I doubt any parent would ever say it is. But my children are who they are. This is our life, it is what it is. I will do whatever I can to make their days easier, brighter and full of love.
They are like me, I am like them. Through their diagnosis I have received my own. They are from me, but I am not their voice.