Not Stupid. Anna Kennedy

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СКАЧАТЬ 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.

      More children were diagnosed with autism in 2008 than with diabetes, cancer and AIDS combined. Despite this, in the same year, the National Autistic Society released results of a survey that suggests that the majority of local authorities in England are still failing adults with autism, and criticised the ‘astounding postcode lottery’ in provision. Amazingly, it was found that just one local authority in England had undertaken a head count of the number of adults with autism in their area. In addition, 64 per cent of councils said they did not have a named team or individual responsible for autism, in contravention of Department of Health guidelines.

      Difficulties with social interactions, social communication and imagination are apparent in people with autism. These three characteristics are collectively referred to as the triad of impairments. For a child to be diagnosed with autism, they have to present a certain number of difficulties in these three areas.

      Broken down, social interaction refers to difficulties experienced with social relationships, maybe appearing aloof or indifferent to others; social communication problems would display themselves as difficulties in verbal and nonverbal communication such as not understanding gestures, tone of voice or facial expressions; and imaginative difficulties are apparent as an inability to develop play in an imaginative way or a limited range of imaginative activities.

      A child with autism will, like a child with Asperger Syndrome, display resistance to changes in routine or exhibit challenging behaviour; they display indifference to others and will join in play only if an adult insists and assists them.

      An autistic child may display little or no eye contact or speech; is often locked into inappropriate routines; some never become toilet-trained; they will guide an adult’s hand to whatever it is they want; they will not play with other children; they will speak incessantly about a single topic such as a washing machine or vacuum cleaner; they will copy words parrot-fashion; will behave in a bizarre manner; will handle or spin objects, will laugh or giggle inappropriately; but will be able to do some things well and quickly, particularly if the task does not involve social understanding.

      They will require specialised education and structured support if they are to maximise their skills and reach their full potential. They face myriad frustrations in life, particularly when they want to say something but someone else stops them from saying it, or when they want to say something but don’t know how to express themselves, or when something doesn’t happen when they expect it to.

      That’s why it’s so important to have strong boundaries and structures in place so they can feel safe and begin to develop trust with others. They need to be taught to be more independent in order to develop their self-confidence and to be reassured that they do have something to offer, and that they can make a difference by reaching their academic, social and emotional potential.

      People with autism have difficulty in displaying empathy and imagination; they often avoid direct eye contact or shaking hands; and may feel uncomfortable being in close proximity to others and are particularly averse to being in crowded places. They may answer rhetorical questions when in class groups with little understanding of colloquialisms.

      When Angelo was diagnosed, my knowledge of other forms of autism such as Asperger Syndrome had been of limited importance to me because, as far as I was concerned, wrongly as it turned out, it didn’t affect our family. My quest for information about Asperger Syndrome following Patrick’s diagnosis uncovered the magnitude of the conditions in the autistic spectrum disorders. We hadn’t realised the scale of autism, but it soon became apparent we were not alone in caring for a loved one whose life is blighted with the associated difficulties.

      I learned that Asperger Syndrome was a form of autism that affected people СКАЧАТЬ