Jonathan's story

Rosemary Cheale

An excerpt from an account of the early years of a child with autism by Rosemary Cheale of London

"You love milk; and I love you". As I said this phrase over and over to my new baby, and knowing nothing of autism, nor having the merest inkling that my robust, handsome boy was handicapped, I nevertheless must have sensed on his part a feeling of alienation from me as he “gnawed" at me greedily. Or is this too fanciful?

Jon was born by Caesarean section (after a delay which seemed excessive) because a long cord impaired access of oxygen to the brain; and once born, he did not breathe for five full minutes. The fact that he had not breathed and had to be resuscitated was withheld from us until his third birthday. By this point it was apparent that something was seriously wrong, although he had passed all milestones early, apart from speech. He screamed so much in that first year that only sleep seemed to quell him – if he could get to sleep! Food did not satisfy him, and he seemed inordinately greedy. Early on, it was thought that Jon was “not getting enough"; and later we were told to be firmer with him because he was a “ruffian". We steeled ourselves, became steel, in effect, and the iron discipline that was the only means of reaching Jon had set in, although we had a great deal of love to give him. The resistance to the overwhelming force that his autism took was to characterise our relations from then on, and it is that firmness combined with love, and praise, of course on the part of all who had a hand in his upbringing, that helped to produce the worthwhile changes in Jon as he enters, now, his twentieth year.

Jon had breath-holding attacks as a very small baby, which were very frightening indeed, as his frenzied cries caused him to turn blue and to lose consciousness for several moments. From these terrifying attacks, it emerged that what bothered Jon was change. He worshipped routine and if that routine was changed it would drive him berserk. He once had one of these attacks when a nappy was being changed. Later Jon would scream inconsolably if the record, of a piano concerto say, came to an end. And at one point, we fell into the trap of putting on record after record, merely to stop the screaming. What that led to was a total standstill in his development. I do not remember how we extricated ourselves from that particular impasse, but here it seems appropriate to say something about Jon's particular obsessions: vacuum cleaners, hairdryers, electric fans and grills, and lifts (elevators), lifts and more lifts! Jon would avidly hoover for me, working himself almost into a trance; and would make the hoover “safe" in any house by looking for it, and placing it always in the same place.

In the street, Jon would run into every electrical shop that we passed. He could not be dragged away. Or he would run into every lift, trying to get in. Bolting was another feature of Jon's early years. As with the hoover obsession, the problem lessened as the years went by, until the bolting stopped altogether after about his ninth year, changing into a wish to be left alone, merely to sit by himself. This bolting though, was linked to the hoover obsession in that it seemed to me (from my readings in psychology) to be a way of dealing with the “black hole" of despair, or rage, that threatens to tear us to pieces. Does this prevent language from developing or does the language handicap produce the despair? I think the latter is the correct interpretation. To put this very difficult notion another way: I learned that the ability to bear frustration characterises normal individuals. We have to do this a lot in life! The frustration, for example, of parting from mother – as you leave for school, say – and being able to hold an imaginary picture of your absent mother in your mind, so that you know that you will return to her at the end of the day, and the world has not fallen apart, is crucial for the development of language. For years Jon never looked back at me, never would say “goodbye", although he greeted me. Jon could not bear this nor any kind of frustration as a small child, running into all the rooms at the toddler clinic, all over the park, into people's picnics, to every possible boundary – over the fence, into the road – life just consisted of chasing him everywhere. And if he would not walk, he would just lie down on the pavement and had to be hoisted in a fireman's lift on my husband's back. I could not do this. I simply could not go along the street with Jon, although I tried. I simply could not be sure of getting home.

How did this difficult child change as the years went by? Jon attended primary school in a well-run unit which lovingly tamed him, taught him not to soil – something not achieved until his ninth year; taught him to read, to write, to count and to start to be able to live with himself. Then Jon went to a weekly boarding school where, after a few more years, a seeming miracle occured – an excellently behaved person, eager for approval, and wanting to be “good" rather than naughty. Many staff were needed, and many techniques. Activities were varied and fun, and experiences were like family life, in that the people he met, from teachers and workers, to dinner-ladies, visitors and school pals, were kind and supportive to each other. Jon had something to contribute too, being on more than one occasion called “helpful". So at the age of nineteen, having taken the General Education Link course for two-and-half years, his progress has been such that he has gained a two-year place in Further Education for Handicapped School Leavers. It is expected that he will do well there. Time has been too short to tell of his swimming prowess, his great love of music; but some snippets from the report that Jon just gained from his Link course may leave the reader with some impression of how far Jon has come:

is a popular and friendly member of the group
travels independently on the bus from school to college and back
worked keenly on painting and hanging a door
showed initiative and perseverance in other tasks such as plumbing, making concrete blocks, bricklaying
showed an obvious interest and ability in the computing course.

From my description of Jon's early years I wanted to demonstrate how impossible it seemed that a child as described could develop into one who was co-operative, popular, patient, persevering and, relatively speaking, competent. But there: it has happened, and processes which threatened to run away with Jon have been put into reverse. Perhaps good concentration is the other side of obsessional behaviour? Of course it is.

From the Newsletter of the Association for Autism