As today is World Autism Awareness Day I thought I would tell you a little story about why there is a need for more awareness about this condition.
John is very sensitive to noise and lighting. So keen is his hearing that he can hear things only sheep dogs usually respond too. He can also feel the vibrations of very low sounds, a bit like Beethoven accept that Beethoven was a slightly better on the piano.
John can stand to look at the brightest of lights which would have the rest of us rushing for our Ray Bans. I have to watch him very carefully at Christmas as he holds fairy lights to his eyeballs without a flinch. He also loves strobe and disco lights, his bedroom is like clubland Ibiza, and again tries to put them as close to his eyes as possible.
This sensitivity means that supermarkets can be torture for John, the hum from the fridges sound like an earthquake and the different levels of lighting plays havoc with his eyes.
I didn’t always understand this, life was and to a certain degree still is, very much trial and error. John and I learnt about coping with autism as we went along.
John was 3yrs old and struggling to make sense of the world around him. He had recently undergone major brain surgery which had given him his life back, but it was a life he needed lots of help with if he was ever going to be able to cope. If something frightened him or confused him his only way of communicating this to me was to throw a major tantrum. He didn’t have the words to say ‘Mum I am scared please get me out of here’.
Consequently I would unwittingly be subjecting John to unimaginable horrors everytime I took him to the local supermarket.
He would start screaming the place down the minute we entered and would carry on screaming and kicking in his buggy until we left. I would be exhausted and in tears of frustration by the time we got home.
I had to buy food and I couldn’t leave John in the car, so unless my mum was available to look after him for me, I had no choice but to take him into hell.
I tried to only do a big shop once a week to minimise the stress on John, the poor checkout girls and the other shoppers. It really was a dreadful noise and we attracted many stares. Mostly people were sympathetic and I apologised a million times whist also explaining that John wasnt just a spoilt brat, that he was infact autistic.
Back in 1991 not as much was known about autism so I couldn’t expect others to know what it meant for John.
One unforgettable day I was trying to do the shopping as fast as possible, singing Baa Baa Black Sheep non stop as this sometimes helped to calm him. I am aware that I looked like a crazy woman; anxiety written all over my face as I sang as if my life, or at the very least my sanity depended on it. Which isn’t far from the truth.
John wasn’t able to find any solace in my singing and was so worked up I truly feared he would have a heart attack or something. I was near to tears with the immense stress of it all.
I suddenly realised that we were being followed by a woman who stared at us the whole time, whilst tutting loudly and muttering ‘Oh for gods sake’. She followed us all the way around the shop until we arrived at the check out, where at last she had her audience.
She let rip at me in front of the whole queue, accusing me of having a horrible, spoiled, snotty nosed little brat, and if he spent five minutes with her she would soon sort him out. Did I not realise that I was spoiling it for everyone else in the shop by letting him scream and carry on, what he really needed was a good slap. Oh, and that as I was clearly a pathetic excuse of a mother, she would be just the person to give him one.
I stood silently while she abused us, John screaming and everyone in the queue looking terrified of saying anything.
When she finally shut up I explained as politely as I could that John was autistic, not at all spoilt. He was however terrified, and she wasn’t helping by yelling at us. She called me a feecky chucker….or words to that effect.
She then had the audacity to say that I should get a flag or something to stick on his buggy saying he was autistic so that other people would know not to go into the shop….incredible! Better still, she said, ‘why don’t you knit him a jumper that is bright green’, why green I have no idea, ‘with big letters on both sides saying ‘ HE IS AUTISTIC’
I had heard enough, she really had gone too far. I told her that whilst with help and support John and I would get better at dealing with his autism it was she who I felt sorry for. I told her that abject ignorance is a terrible thing and rarely if ever improves with age. So badly affected was she that maybe she ought to consider having a flag of her own to warn others to avoid her at all cost. I volunteered to insert it into a place of extreme discomfort.
Further more I was more than happy to knit her a huge green jumper with I AM IGNORANT on one side and I AM A BULLY on the other.
You could have heard a pin drop.
The queue of shoppers parted like the Red Sea as sympathetic mothers gave up their place in the line so that I could pay for my shopping and get John out into a safer environment. I didn’t look at the bigoted woman again or have a clue what happened to her and I didn’t care.
Thankfully as awareness and understanding of autism grows, situations like this are becoming less and less.
Thanks for listening my friends.