One area that is particularly problematic for Ben and I am sure many other autistic children, is his sense of self. For many years, I, Portage (the pre-school home education service) and anyone else working with Ben, spent a great deal of time and effort attempting to teach him that he was Ben. When I realized that Ben was not deaf, I very much wanted him to turn to his name or to know that he was the Ben that I was talking to and talking about. Every single day without any exception at all for at least thirty-six months I spent some time each day saying, "Where is Ben? - There he is" and touching his chest. This actually proved more difficult than I first thought because if I pointed to Ben's chest and said "There he is," he eventually learned to repeat my actions.. .fully believing that his chest and indeed everyone else's chest was this Ben that everyone was so keen to talk about! I therefore tried with photographs of all the family, pointing out Ben. However he only noticed some tiny details such as a car on his jumper or some tiny object in the room. We spent many hours with mirrors trying hats on with Ben and showing him himself wearing the hats in the mirror. Some days he simply didn't seem to notice anything and other days he went around to the back of the mirror to see where this other boy was. There was no miraculous way to get Ben to establish a sense of self and it is still rather shaky even now. I can call "Ben" now and he will rarely respond, however if I say "Ben Jackson" he will usually turn and answer, presumably because that is how he is addressed at school.
Understanding facial expressions and emotions is an area that autistic people find difficulties with and something that most people, even loosely involved with someone autistic, are aware is a problem. One area that is not so commonly recognized is the way in which autistic children's distortion of their own sense of self also means they have great difficulties in understanding their own emotions. Luke often tells me that he doesn't know what his face is saying. Just the other day, Joe had moved Ben off his beloved computer and Ben was heartbroken. As he came in to scream and drag me out of my bedroom, presumably to move Joe off the computer, he caught sight of himself in the mirror. He stopped in his tracks and started frantically wiping at his tears, apparently fascinated. He then started to try to push them upwards and obviously back into his eyes, the entire time saying "My eyes are doing it, my eyes are doing it, that water".
This photograph shows Ben 'smiling'.
A smile to Ben is an upturned mouth and he doesn't yet equate it with a feeling. He therefore merely sticks his fingers in his mouth and turns the edges up ifhe is told to smile and however much we practise facial expressions with him, if he has no understanding of the emotion we are talking about, there is little point in him learning that happy is an upturned mouth.
With so many shades ofautistic spectrum differences in our household, we spend many a crazy hour playing games whereby the boys learn to read facial expressions and body language - in fact we have devised our own version of charades whereby the girls act out a little play without words and the boys have to guess by their body language and facial expressions exactly what is happening. We get some hilarious answers! We also have Simon Baron-Cohen's Mind Reading computer programme which aims to aid people with all shades ofthe autistic spectrum improve their recognition of facial expressions.
Although Joe's main diagnosis is AD/HD, he too has these difficulties with his own sense of self, one particular day highlighting this with much clarity. A familiar cry came from Rachel's bedroom and it seemed that Joe had squirted her expensive tubes of paint everywhere. After issuing a seemingly futile lecture about the rights and wrongs of going into other people's bedrooms, touching their belongings (many of you with children on the autistic spectrum, particularly those with AD/HD, will be all too familiar with the kind of lecture I mean.it's the one in which you are faced with a blank expression and possibly an odd shrug of the shoulders) I ended my monologue by saying "Well Joe, are you ashamed of yourself?" (I know, it was probably a pointless question but I am only human.) Joe hopped from one foot to the other, scratched his head, swung his arms backwards and forwards and merely frowned. It seems he didn't know what the word 'ashamed' meant. Luke, having come into the room whilst I was reprimanding Joe, was quick to pipe up and clarify for him. "It's when your heart beats really fast and your face goes red," he told Joe. Immediately Joe ran off to the bathroom and looked in the mirror. "No," he replied, "I don't think I am ashamed now but I think I must be when I go to Taekwondo because that always happens then!"
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