Allie is a single mother who has ADHD, works a full time job whilst also being the full time carer for her autistic son, AJ. By Nathalie K elly What type of autism does AJ have and what are its characteristics? The characteristics for him are that he is obsessed with things being lined up and organised he is very specific about things being done in a certain way. For example, everything has to be done by the left side first, if you're putting his shoes on the left foot HAS to go first, if you're putting his coat on - the left arm has to go in first, his bag hangs on the left too. He is also very particular about who does what for him.With his toast, you can't cut the bread for his toast, he goes to the same cafe every Saturday morning, has the same breakfast: two burgers with spaghetti, cucumber, two slices of toast and an ice cream at the end. You can't change it, it has to go by routine, he's so specific about it. You could do something like putting his
shoe on the wrong foot and he'll freak out, but you could move house and he wouldn't bat an eyelid. It's the little details that have to be specific, big things he can cope with.With his communication, he is very literal - so if you said: "It's raining cats and dogs" he'll say: "No it isn't, cats and dogs live on the ground." You can?t say anything that isn?t factually correct. You mentioned earlier that he isn?t subject to bullying as he attends a school which caters to his disability, what type of school is it? It?s a Special Needs school. I say he?s not prone to bullying, but I don?t think he would genuinely understand bullying if he were ever subject to it. There are probably children who have taken the mickey out of him, laughed at him but he just doesn?t
acknowledge it. He doesn?t recognise it, and that?s actually one of the nice things - the fact he doesn?t know people are doing anything negative. So he wouldn?t recognise sarcasm, would he take it quite literally? Yes, that?s right. ?No i?m not silly? he?d say. He also has got really good children around him who wouldn?t allow him to be bullied. He?s actually quite popular for some reason, even though he can be quite horrible at times; he is very particular about who he wants to be friends with - but everyone wants to play with AJ as he makes these weird but wonderful games up, which intrigues everyone. The kids all want to be AJ?s friend as there?s a chance they could come over and have a sleepover, and that?s not just with school kids, it?s with any that get to know him. What are the challenges of being his carer? Well as I?m a single parent, the challenge has been to manage
working. When I fell additional funding!? pregnant with AJ I was due This was the school all of to start two university his friends were going to, courses. I had to get them but they refused to take completed with my work him on board. So we were by the following January, stuck without a pre-school but he was due in the July. for AJ, panicking He was as he has to have literally 3 "HE'S ONLY TW O some form of days old education and be YEARS OLD, HOW when I around other started the DO YOU KNOW children. After courses. I HE HAS AUTISM?" weeks of trying had a real we finally got busy, him a place at another intense time when he was pre-school which I was younger - but I had to do it initially against as it was for my work. There was no known to take care of one else who was going to children with behavioural come in, look after him and difficulties. However, he provide the money. When thrived there. He had a key he was first getting worker and they just got diagnosed, there was the the best out of him through challenge of getting consistency. They then appointments and getting helped him get his place at people to listen to me. Alexandra school where People said: ?He?s only he?s got on really well at two years old, how do you since. know he has autism?? Do some people mistake being his mum, I just knew. autism for bad behaviour? We had loads of challenges with nurseries, where the Absolutely. I always have first pre-school he attended to say to people: ?My son whilst going through has autism, if you want to diagnosis were aware of watch him, how would you the situation and said they feel if someone were to be would try and take him on watching you in the same board, to see how he got manner?? It was a real on. When I came to pick challenge trying to get AJ him up after the first day to go into supermarkets, he they said: ?No, we can?t would kick off but I was have him. He?s too difficult adamant that he had to and won?t join in.? to learn. It got to the point which I responded: ?He?s where I would allow him to on the autistic spectrum, write the shopping list, he?s still in his own mind, even though it was only he?s going to stop and stare things he wanted. So we at walls instead of joining would go into the in - that doesn?t make him supermarket and follow the difficult, he?s just order of the shopping list, non-verbal. You cannot even if it meant going all discriminate against my over the supermarket to son as he?s disabled, you follow this order. One day can actually apply for when I went the wrong
way he freaked out, and a lady looked at me and said: ?You need to reel him in, you can?t accept that sort of behaviour!? and I just looked at her and said: ?it has taken me an hour to get my son to write this list, he is seven years old and has chosen all the items on it, he is autistic and this is actually the first time he has come in here and you?re going to criticise him? who do you think you are?? To which she then profusely apologised, but we walked off. Do you think carers get enough recognition? No. Although the Care Act has come into place, there?s more recognition as we have the same rights as the vulnerable person or the vulnerable child, but I don?t believe the government gives enough recognition to carers. What the government should be doing is protecting us and empowering us to continue to care. If I suddenly had to give up my work, I would be expected to be compensated as I would have to continue my caring
role to prevent my son from going into a residential unit which would cost ÂŁ1500 a week. We are saving the government so much money in this sense by continuing to care. I used to be the lead carer for the Harrow Council and I used to be responsible for the carer assessment side of things, and I met so many carers who you try to support as much as possible but you don?t have the money or a budget, so all you can offer them is emotional support and signpost them to agencies. There?s also not enough publicity to say that if you are a carer, make sure that you make yourself known. I used to go all around Harrow putting posters up that said this, and to contact me so I could point people in the right direction of what to do. I?m not the senior monitor for the residential and home care, I still help people and show them what they need to do and where they need to go. I want people to know the support they can actually access and the financial support they could be entitled to receive.