“The difference between high functioning and low functioning autism is that high functioning means your deficits are ignored and low functioning means your assets are ignored.”
I’ve always been grateful for The Rose’s relatively ‘low visibility’ ASD (I know I know)! But sometimes I just want people to see that The Rose is really “A proper one” (Ok just stay with me here!)
We work really hard on social skills. We have learned to deploy calming strategies in public which don’t scare people in Sainsbury’s. We practise imagining how the other person might be thinking without assuming they want to hear the football scores or hear about ‘hot boys’ and we try to fit our ‘sliding door’ worlds more closely.
But when we go out we prepare for battle. Sometimes it’s spreadsheets of possible conversational routes and their infinite resultant directions. Sometimes it’s lists or topics to bring up. We can only cover so much (there simply isn’t that much paper in the world) but we prepare and practice for what might be. She works hard. It’s exhausting.
The other night we were invited to the theatre. It was a play where south Yorkshire miners take off their clothes! It has the word’ Monty’ in it. It’s a brilliant and funny film and The Rose was beside herself with the prospect of LIVE naked flesh
There would be people at the theatre who knew her. She was getting a lift to meet me there with one of them– we practised the conversation she would have. We wrote down some topics. We enacted how it may be. We agreed and re agreed the time they would meet for the lift. The time she would arrive. The time the play started. What we would do next. She was as nervous as a kitten but – determined.
I was late. I was working and trying to meet a deadline. I was stressed. She was stressed. I met her outside the theatre, late. She was drained. I was mortified.
She didn’t want to have a drink, or an ice cream, or hang around so we went straight to our seats – in exactly the right order. Even though the aisle nearest our seats was the closest, we had to use the far one and walk along the rows because it was the right chronology. I hardly noticed, I was watching The Rose’s sheer delight and anticipation at being out and about and the possibility of male naked flesh. I was watching to see how she coped – ready to catch if I was needed.
As everyone started to filter in and get seated, The Rose clicked into conversation mode. Oh she’s so good at it, she really tries hard. Think Joyce Grenfell conducting an interview with the Queen. She gathers her ‘topic’ and begins in a quite high, very posh voice. “Oh how lovely to see you. You are looking thin, do you like willies?” you get my drift…. It’s brilliant.
She was adorable. When someone asked her if she came to the theatre often she said “Oh not too often but I act a lot and am in a play and I am an American (she lapses into a brilliant US drawl and continues) and I talk like this and I am pretty and have a black face. I think I am an American. I am, aren’t I mum? Yes I am an American and I have a big ear well it’s not a big ear it’s a thing that does things I don’t know what it is but it does things AND I have a name like Ah ah ha ha and yes well yes I do and that’s it ha ha ha ha ha (Lieutenant Uhuru from Star Trek! ) and then there’s a crash and a flash and Dad builds the set and Mum watches and makes the posters don’t you mum yes she does and I love being here tonight it’s so sort of SO sort of red you know red, yes red” … (silence, smiles and nervous laughing).
She is the BEST company.
I was so proud as the curtain went up. And even though she kept asking “is this the bit, is this the bit” when it finally WAS ‘the bit’ she popped like a cork and squealed like a Banshee. There was a standing ovation and she turned around and looked straight at me, eyes burning and shouted in my face THAT WAS MUCH BETTER THAN JACK & THE BEANSTALK it’s the best musical I’ve ever seen!
It was a high octane night. She crashed pretty rapidly and needed a lie down in the back of the car on the way home. I stupidly wanted to keep the conversation going as I was enjoying her so much, but she was in sensory overload and turned very cross, quite quickly, at my excited probing – who can blame her? It made me sad too – that I’d almost forgotten, neglected to be careful with her.
Next day someone remarked how lovely she was – I swelled with pride, then came the ‘confidential’ overtone and the killer punch
“Are you sure you haven’t got it wrong?” “I mean we don’t think you’re right about The Rose. She seems fne.”
Arghhh!!!! – How do you cope The Rose ? – Can you help me stay calm?
I love The Rose so much already! How lovely for you to be the proud mum for the evening. And just when you feel society has accepted your daughter you get the killer ‘She seems fine’ line the next day. And she is fine. Just the way she is. Keep writing, I love it!