I’ve lost count of the number of times in the last couple of days even that ive read posters or facebook articles about autism friendly events. Eg closed screenings of particular movies, closed access to soft play, a shop open specifically for the purpose at a specified time, even a cruise specifically for autistic children and their families. These events may be either just for autistic children, or some let siblings attend also.
I really think this is the least ‘autism friendly’ thing ever. Here’s what it says to me:
- A business has jumped on to the autism bandwagon and drawn attention to it
- Your child is awkward and we need to do everything differently for them to be able to come here
- It’s a great idea to put so many children with difficulty understanding social skills in to the one place at the one time
- Something else for the siblings to be excluded from (or included as tokens as the case may be)
I’m not criticising those people who find these events helpful, as no doubt there are many accommodations made to suit the attendees.. but, it’s not for me.
I’ve said it before and I’ll say it again. These children are children first and foremost. We need to work harder to ensure that businesses become truly autism friendly, without having to shout about it. And not just autism friendly, but people friendly.. And this is simple.. and would benefit everyone. It would truly be inclusive. . Not divisive, stigmatising or patronising. Sounds better already, doesn’t it? And how hard would it be? Not hard at all as it happens..
I’d like to start a quiet campaign ( I say quiet as i dont want to have to rub anyone up the wrong way. I’m not arrogant enough to believe everyone will agree with me, but the smart ones will😉).. I’d like to work with local businesses to show them how to consider the needs of their catchment population without segregating them. Simples.
I can say this after having endured (the best word to describe it) the downside of a manic incident with Amy last night. It’s hard. Having registered at a local autism charity a couple of years ago, in the car on the way home I knew I’d not go back, that I didn’t agree with the focus being on what was ‘wrong’ with your child. I’ve spent years trying so hard to focus on what goes well.. The ethos of many ‘support’ organisations goes against my grain as they get drawn into all of the commonalities in the room, and those are never positive things.
I don’t doubt that parents need a support mechanism, but I believe this should be a positive and constructive support. Parents are let down by a system where the end result is a word, which is left hanging for parents to do with as they will, and for schools to do very little with.
I don’t often talk to my friends about the hard bits. But I really talk about the small victories. Because they are not small. They are huge achievements. In a world where Amy struggles to make sense of everything she is bombarded with by her senses (6 of them..), when there’s a gem of wisdom and insight from her, you dine out on it for as long as you can. The rest is forgotten.
Tonight in the midst of the madness, I saw a frightened child. One who needed me to be an adult. She told me she felt like a caterpillar but she should be a butterfly.. how profound is that?
So let’s encourage the butterflies. Let’s not remind them that they frequently behave like caterpillars, lets not put caterpillars in a room with only other caterpillars and expect them to learn how to be anything other than a caterpillar.. let’s show them the skills, the behaviours, the reactions that normalise the metamorphosis. You learn from watching others, … so we should be integrating our children in as many normal situations as we can and giving them wings a little at a time. One day they will fly.
As I was just about to hit ‘publish’, I have just remembered a song which makes me cry every time I listen to it – it will do more so now! Link attached.. Enjoy. A x