In the final part of a mother’s account of her son’s autism, a single traumatic incident provides a fascinating insight into the workings of the autistic mind
It was Tuesday, 10:10am, and the phone rang out. My heart leapt briefly and I mentally chastised myself. It had been two years since all the major schooling problems with my young son, and now he was doing exceptionally well at the school he’d moved to. But whenever the phone rang my mind still flashed back to the familiar conversations of the past: “Mrs. Wilson, Callum has been excluded following an outburst.” I half smiled to myself and tentatively answered the phone.
“Hello,” I said cheerily. But it was the school.
“Eve,” said Callum’s Teaching Assistant (TA), in the soft voice that had proved such a success given Callum’s sensory aversion to loud people, “we’re having a lot of difficulty with Callum today. He seems so agitated and we don’t know why. Is there anything at home you are perhaps aware of?”
“I don’t know. He slept alright,” I said, as my mind searched for anything obvious. “The only thing I can think of is that he’s been anxious about playing outside during breaks; he still thinks he has to, even though I read his home/school diary to him. How’s his anxiety showing itself?”
“He’s not following instructions, he’s putting his hands on his ears and telling me to stop talking,” she said. “Then, as we left the classroom because he was distracting other children, he head butted the table, began knocking chairs over and kicking things on route; it’s difficult to calm him down when speech is upsetting him. The head teacher said to call you.”
“I can’t think what’s wrong. Without an obvious trigger, I’m as lost as you are. Do you want me to collect him? My only concern about that is giving Callum the wrong message – that you can play up and come home.”
“I’m not sure,” she whispered, “I’ll have a word with the Head and get back to you if we feel that’s necessary.”
I hung up the phone feeling oddly relieved; the worrying thing that could happen finally had, and it didn’t feel anywhere near as negative an experience as it had been at the previous school.
20 minutes later, the phone rang again. “Mrs Wilson,” gasped the Headteacher urgently, “we’ve never seen Callum so violent. He’s thrown and overturned furniture, trashed the office, and now he’s out on the field at the perimeter wall. Could you come in right away.”
As I entered the Head’s office, she explained the current situation. “He’s still outside with staff watching him. We have no idea what triggered the outburst, but we’ve noticed deterioration over the last two weeks. His TA has been withdrawing him from class more frequently. I heard a commotion from his classroom and went to assist. Usually, he is calmed by me, but he ran into my office crying and shouted ‘you’re spending £67,000 on new toilets; where’s my monkey bars?’ Then he overturned the cabinet and began throwing everything before bolting outside.”
“When did it escalate?” I asked.
“Playtime; he wanted to play with Drew, but Drew went to a medical appointment, and this change seems to have unsettled Callum more than we would expect,” she replied.
Suddenly the TA and SENCO appeared. As they’d reversed away from Callum on the field, he’d moved forward until he was safely back in school. “Mum’s here,” said the TA simply, instinctively creating a large gap between herself and the office door. Slowly, mutely and without eye contact Callum entered the office, typically settling on a seat away from everyone before keeling over into the foetal position. His face looked ashen and drained.
“Callum, you’re not in trouble,” said the Head. “I called your mum in because you needed help. We tried to help you but we couldn’t, so we asked your mum to come and help you.” Callum continued to gaze into space.
I discussed school and home life with the school staff members in a search for triggers. I explained from experience that after an upset Callum self-isolated for ten minutes, after which he’d emerge and was often able to shed light on the roots of his behaviour. Failing this, and for reasons beyond me, the pattern was that he was often able to elucidate his behaviour two days later.
By now, Callum had taken up two hours of teaching time and four members of staff, but the head decided that he should stay in school. She felt that to send him home would give him mixed messages of failure and punishment, given his previous school history of frequent exclusions, and draw attention to a potential link between his behaviour and control. She decided that he should not be put under pressure to conform to the curriculum, given his anxiety levels; instead, he should choose an activity in a quiet area with her supervision.
Typically, Callum chose maths as, like many children with autism, this is a subject he is drawn to, and Callum says he finds calm in the predictable numerical patterns; but Callum’s fascination with numbers is also influenced by his synaesthesia, a rare mixing of the senses which most commonly results in the ability to see letters and numbers as colours. Callum has a more complex type, experiencing letters as numbers and dots, and numbers as colours, textures, shapes, sounds and emotional states. For example, his favourite number is fourteen and vivid blue; C is number two, mid-green and sponge-like in texture; M is eight, brown and Callum visualises himself sitting on a rock, while he experiences nightmares about speed camera signs which are thirteen, toxic pink, large and intimidating.
As all these things went through my mind and I half smiled to myself again, recalling the Mother’s Day card he’d made; his name was written in the never changing coloured numbers I am accustomed to. I often find sheets of seemingly random numbers and have learned to decipher some of his writings.
Another of Callum’s calming special interests is music. He plays the drums, guitar and saxophone, each of which ignite very different colour sensations within him. Strumming the guitar results in the numbers and colours vibrating and merging into a moving, jiggling rainbow, while the sax results in pure specific colours. Whole pieces of music create scenes which seem to jar or delight his senses.
Thursday morning came and Callum woke early. Climbing into my bed, he suddenly launched into the conversation which was to explain the anxieties that had led to his behaviour. “She claps her hands and says ‘come on Callum, go outside; go on, get some fresh air; go on, you’ll be fine’. Then she claps again. It hurts my ears.”
“Who says this Callum?”, I asked, finding it hard to imagine his teacher or TA doing this, given their knowledge of his sensory and social differences.
“Miss,” he replied.
“Miss who?” I enquired, still baffled.
“I don’t know her name; she’s new. The teacher we should have broke his leg really badly in sport; I don’t know if he’ll be back.”
“When did you get a new teacher?”
“Two weeks ago. If I throw a Frisbee and the wind catches it mid air and it goes over the houses, I’ll be taken round to apologise; then I’ll have to clear up the mess; then I’ll have no break times for a month. I like to play with Drew inside, but now I have to go out. All the kids, they play on the right side; so I go there, but Max strangled me and said ‘get lost Callum or I’ll kill you.’”
“Are you frightened of Max?”
“No, he’s too fat and slow to fight, but everyone will stand round and shout ‘fight, fight, fight’, and when the teachers come I’ll be in trouble and get excluded again like the last school. The last school had monkey bars and apparatus outside. I know how to play on monkey bars. There are too many bullies outside. If I fight I’ll get excluded.
“Since the teacher left it’s all going wrong like the last school. She clapped her hands. Drew’s Mom came and took him to the dentist. I didn’t have anyone to play with. I don’t know what to do. They’re spending £67,000 on new toilets; we already have toilets, but not monkey bars. I know how to play on monkey bars.”
Quickly, I wrote down Callum’s words. Later, as I read it out to Callum’s TA and the SENCO they frequently exchanged glances, nodding their heads and smiling knowingly at each other. His TA explained that on the morning before the outburst, the Headteacher had called a whole school assembly, following complaints from the occupants of two houses which abut on the school field. Apparently, some children had been throwing rubbish and stones over their properties, so the Head had decided to warn all pupils of the consequences of such behaviour.
Unfortunately, like many children on the autistic spectrum, Callum is prone to anxiety and had taken the threats of punishment both literally and personally. This, combined with the emotional baggage he still carries from frequent exclusions from his previous school, signalled inevitable failure and exclusion to Callum. Further, the new class teacher was another change Callum was finding hard to come to terms with, and, due to the positive work of previous staff, she perceived Callum as having made enough progress to cope socially outside, believing that he just needed a little encouragement. Her clapping affected Callum’s senses, while her encouragement was read by him as direct instruction.
The anxiety had been building for two weeks with Callum unable to communicate appropriately. When the Headteacher delivered the final blow of sanctions during assembly the day before, and the one child Callum did play with left for a medical appointment, it was too much for him to manage. When the Head attempted to intervene, Callum held her responsible for his now catastrophic social dilemma due to her assembly speech and budgetary decisions.
Two years ago I attended a training course about understanding autism for parents, during which we were taught to look beneath the tip of the iceberg for hidden explanations of the child’s behaviour. Now I understand how much meaning lay in that one simple sentence: “You’re spending £67,000 on new toilets; where’s my monkey bars?”
Article first published in SEN Magazine issue 46: May/June 2010.