This picture (below) is a throwback to just over 15 years ago, when Penguin was still bobbing about inside of me, getting ready to make his grand entrance, and change our lives forever – as I’m sure most children do for their parents.
My knowledge of autism back then was almost non-existent (and mostly based on having seen ‘Rainman’ when I was about 12…). I’ve learnt a lot since then.
Some of my learning about autism has come from people we’ve met in real life, and some have come from books. But a huge chunk has come from online connections, pages, facebook groups etc. Especially in the early years, it was a massive comfort to find that there are other children out there ‘just like mine’. We are not alone. There are many thousands of people living with similar ‘differences’ to my son’s, and there are parents who share the same worries as us, the same hopes, fears and other feelings.
Once I started to feel able to talk about autism with some confidence, I started writing about it – and about our life in general, which it always permeates, more or less. I happily mention autism in lots of contexts throughout the year, but then April approaches and suddenly it becomes more complicated… Lots of posts telling us to ‘Say this, don’t say that; Do this, don’t do that; Listen to this, not that; Use this colour or symbol, not that’. And I’ve never really taken well to being told what to do, so those posts don’t sit too well with me.
I don’t care much for symbols, flags etc, nor am I aligning myself with any specific organisations. I don’t have a preference for calling it autism ‘awareness’ or ‘acceptance’. Personally I feel that more understanding is what I wish for the most, probably?
A greater understanding of how healthcare can be complex for my son and other autistic people, and what might help with that. Understanding of how communication is complex and what might help. Understanding of safety issues and what might help. Understanding of ‘challenging behaviour’ (hurting self or others, putting self or others at risk etc) and what might help. Understanding of sensory issues, learning difficulties/differences, issues with hygiene, eating, sleep, health etc, and what might help. And more…
I have learnt so much over the years (and still do) from other parents. I have also learnt a great amount of important and helpful things from OTs, speech therapists & other professionals with an online presence. And some very valuable insights have come directly from autistic individuals. We all have different experiences and knowledge to contribute with.
The one person who has taught me the most about autism however, is my son. We have figured things out together, learning as we grow, and continue doing so. It is fascinating, difficult, exciting, complicated… good and bad. As is life.
Over the years, I’ve also come to recognise my own ‘neurodivergent’ traits. Though they are not enough to warrant a diagnosis, at least I don’t think so (as they are not significantly disabling for me), they do help me be more ‘in sync’ with my son, and help my understanding of him and how to support him.
I guess what I’m trying to say here is that I will keep on sharing about autism, about what I’ve learnt and about my experience of it from a parental perspective. And I will keep on learning from others too, regardless of what colour ribbon you might be sporting or if you are a parent, a professional or an autistic person (or any combination of those). That goes for this Autism Acceptance Week, and this April, as well as any other time of the year.
Thank you for reading x
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