Not Stupid. Anna Kennedy
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guts to learn of Angelo’s autism diagnosis and I remember crying for six weeks afterwards. Sean and I knew nothing of the condition – in fact, my first instinct had been to wonder how long Angelo would live. I didn’t know anyone else who had an autistic child.
So, what is autism? I didn’t like the sound of it. It’s such an ugly, harsh word. Basically, we felt that, after Angelo’s diagnosis, we had just been left to get on with it, since there was very little offered to us in the form of advice or support. Some doctors assumed Angelo’s condition was genetic, though, so far as we were aware, neither Sean nor I had autism in the family.
I realised I had to pull myself together and that feeling sorry for myself was of little use to Angelo, Patrick or Sean. I had a thirst for knowledge and I embarked on a voyage of discovery. The trouble was, the more I found out about autism, the worse the prospects seemed to be. The outlook, in my eyes, was so bleak and confusing. Nevertheless, I remained determined to find out all I could about the subject.
That, however, was not as easy as I might have initially hoped. First of all, I contacted the National Autistic Society, or should I say I tried several times without success. I should point out, however, that nowadays these problems have been overcome. Nevertheless, it was so frustrating trying to obtain knowledge at that time from an organisation that I just couldn’t get through to.
At last I managed to speak to someone who told me she would forward some information to me and she recommended a useful VHS video that would be enlightening, which I paid for over the telephone.
Six weeks later, I had heard nothing from them. No video, no information. Coral rang the society a couple of times to hurry them along on my behalf. They apologised and, eventually, the leaflets and video arrived through our letterbox. Watching the video for the first time was a truly traumatic experience. In fact, after just three minutes, I ejected it from the player and felt as if I was going to be sick – not because of the children featured but because of the severity of their condition. Some were rocking, others swaying from side to side. No disrespect to the children, but I couldn’t help thinking that, if this was all Angelo had to look forward to, well, that would be pretty hard to bear.
It got to the stage where I couldn’t even keep the video in the house – I preferred to lock it away in the boot of my car. Meanwhile, Sean didn’t want to read any of the information leaflets we had received. He simply buried his head in the sand and it seemed he was unable to accept that a child of his could have such a condition, which made me feel very alone in trying to come to terms with our situation.
Sometimes, even now when I’m at home with three other people, I can feel so lonely. Everyone seems to be doing their own thing. Patrick could be talking to himself upstairs in his room; Angelo, bless him, is in his own world, maybe playing on his trampoline in the garden; while Sean might be studying or using his computer. He has a Masters in IT, which means he spends a great deal of time fiddling around on the computer at home. For that reason I’ve always hated computers – to my mind, they are like ‘the other woman’ in Sean’s life.
Because I wasn’t computer-literate at the time, I didn’t have access to the internet, although I had been able to find out a certain amount through my work with Health Call, a doctors’ answering service. The deeper I dug, the more I found out, but sometimes that just added to the confusion. There were so many different therapies, most of which claimed to help but were very expensive, and we had no idea which way to turn for the best. At least, I thought, Angelo has a bigger brother to help look after him when he grows up a bit more. Even at this time I had convinced myself that Patrick would eventually grow out of his own problems.
I knew Angelo was still the same Angelo we knew and loved, but I found myself observing his strange behaviour more and more. In fact, I frequently spent ages just staring at him. He would often just spin himself around and around, and was, seemingly, a happy boy, although his moods were interspersed with tantrums. Patrick had tried to interact with him in his own way, blowing bubbles for him and playing on the seesaw, even reciting nursery rhymes coupled with clapping at the end of each rhyme.
The National Autistic Society’s literature had highlighted the traits of people with autism such as ritualistic, repetitive behaviour and poor communication skills, and that, as very young children, sufferers don’t tend to point to something they want but will lead you to it, and this was particularly apparent with Angelo.
Ros Blackburn is a prime example of how autism can be discovered by accident. Some years ago, Ros’s parents thought she was deaf because she didn’t speak and didn’t seem to hear. Even their doctor confirmed she was deaf, then, as he went to write down his diagnosis, he made an error and crumpled up the paper, the noise of which Ros obviously heard.
Ros is now a very high-functioning young lady who goes around giving talks about her condition. She finds it difficult to read and is unable to make her own bed, but, if you speak to her, you would probably not realise she has a problem.
Ros is very articulate, although she still doesn’t like people to come too close to her. In fact, a movie called Snow Cake (2006) stars Sigourney Weaver as a character based on Ros. Weaver spent some time with Ros as she prepared for her role in the film and I think she played the part really well. Ros was one of the first people with autism that I heard speaking at a meeting later on our voyage of discovery – and seeing and hearing her gave me real hope for the future.
Patrick had quite stilted speech, very literal. If you tried to hurry him along by telling him to pull his socks up, that, quite literally, is what he would do. I’d always told Patrick he should be careful of cars when crossing the road. One day, when he was standing on the side of the road with me, he looked right, then left, then just ran out into the middle of the road, causing a motorcyclist to take evasive action as he screeched to a halt before calling me a stupid *@!*!!
I grabbed hold of Patrick and shouted at him, ‘What did Mummy say to you? I told you. I said you mustn’t cross the road when cars are coming!’
‘But, Mummy, you didn’t say anything about motorbikes,’ he replied.
Although they are both on the autistic spectrum, Patrick and Angelo are so different. I had one child who had limited speech and didn’t want to be touched, while I had another who wanted to be touched and kissed, and didn’t have such limited speech.
I discovered that some children with severe autism have no speech whatsoever, no eye contact; they may head-bang, maybe they never even say ‘Mum’ or ‘Dad’, and I can’t think of anything more hurtful to a parent than never to hear those words. At the other end of the spectrum, sufferers may be boffins, really clever people who look down on people they consider not to be as clever as they are.
Although autism is four times more common than cerebral palsy, it remains a relatively unknown disability. It was first diagnosed in 1943 and is now known to affect more than half a million people in the United Kingdom.
It’s a developmental condition that affects the way the sufferer’s brain processes information. Sadly, there is no cure, although much can be done to ensure the person affected can be helped to develop the more basic skills they will require in everyday life, not least being able to communicate more appropriately with other people.
Because a child with autism usually appears like anyone else without a disability, it is often assumed by strangers that a related tantrum is either down to naughtiness or poor parental control when, in fact, it is neither. This was something I had almost become used to whenever I was shopping with Patrick or Angelo, particularly when they had been refused something they wanted. If only people really knew the true reasons why they sometimes behaved in such a fashion, then, perhaps, they would be more sympathetic.
People with autism often have many difficulties in life. Research at the time claimed autism was displayed by one in every 250 people to some degree. More recently, however, figures have suggested the ratio was one in a hundred until a report released by Cambridge Research Centre in 2008 revealed that one person in every 59 in the United Kingdom has some form of autism. It is more common amongst boys than girls and has now been recognised as the fastest growing serious development in the world.