Autism: diagnosis day horror


In the first of a series of frank and heart-felt articles about her son’s autism, a mother re-lives the day that changed their lives forever

Callum and I made our way through the maze of corridors and finally entered the child psychiatrist’s office. I had no idea why we were here. All I knew was that staff members at his school were finding Callum’s behavior impossible to manage, and that he was not proceeding academically in line with his peers. The psychiatrist leaned casually back in his chair, while a man and woman in their early thirties sat nearby, pens poised readily over A4 notepads.

“Hello Callum” said the psychiatrist, pausing for the response I knew wouldn’t come, “Can you sit down?”
“Ja” replied Callum, picking up various toys and firing questions at the walls without waiting for answers.
The psychiatrist rephrased his question. “Callum will you sit down?”
“Nein” replied Callum.
“Callum, sit down!” he instructed simply.
Immediately, Callum sat down next to me, eyes glued to the spinning wheels of a toy car he was clutching.
“Callum, how old are you?”
“Ich bin sechs jahre” he replied, still gazing at the spinning wheels.
“What is your mother’s name?”
“Meine mutters name ist Elaine.”
“Why are you speaking in German Callum?”
Without acknowledgement, Callum dropped the car, leapt from his seat and rifled through a tub of multi-coloured building bricks. I knew he’d rearrange them by colour, although I hoped he’d build something like other kids.

The psychiatrist redirected his question to me. “20 minutes last night,” I explained, “he wanted to learn Spanish but the library didn’t have it, so I took German instead.”
“Tell me, did he sit down with you to learn?” he continued.
“No, he doesn’t like sitting, so I put a tape on and he wandered around his room playing with things on his own, like now” I replied.

A barrage of questions followed, foetal and family history were taken, there were several more failed attempts at direct interaction with Callum, and much frenetic note-taking was completed by the man and woman I now knew to be the occupational therapist (OT) and the speech and language therapist (SLT). We then adjourned for a short break, during which I wondered what place an OT and an SLT could possibly have in our lives. Callum’s speech development was way above average, something later confirmed in the ensuing reports. But I’d been oblivious to Callum’s literalism; I’d been busy mistaking it for wit, irony and insolence. A paediatrician once asked Callum to stand on one foot and Callum obliged by standing on his.

The sound of Callum’s name being called shook me from my musings, and we returned to the psychiatrist’s room. “Mrs. Wilson,” he began, “your son has autism, ADHD and…” His voice became a distant echo as I went numb from the shock and horror of the word AUTISM. I wondered what the psychiatrist made of my complete outward non-reaction, but my mind felt paralysed. My beautiful, perfectly formed little boy…this had to be a terrible mistake.

OK, I knew he was different (the head banging, the rages), but not autism. Fleetingly, I recalled a little boy with whom I’d worked in a special school three years earlier. He had no speech, no verbal communication, and he behaved bizarrely: standing on the table shaking a bottle of water, screaming, running away, and turning plastic balls over and over in a sink. Momentarily, I became aware of Callum spinning something in his hands, seemingly oblivious to the enormity of what was being said about him. And my world spun; I had too much information and not enough knowledge to register the meaning of all that I was hearing. My mind was adrift on a tide of emotions. I needed to know more but I was aware that I didn’t even know what questions to ask.

I am ashamed to say that I felt ashamed.  How could my child be somehow “less” than other children. What had I done during pregnancy to harm him? As I left the psychiatrist’s office, I thought: you’re wrong; this is a terrible mistake which you will surely come to see. But it wasn’t the psychiatrist who was wrong, it was me. I couldn’t face something that I didn’t yet understand.

That was four years ago. Somehow, I’d failed to recognise a multitude of Callum’s autistic sensory issues: his inability to cope with sudden noises, loud noises, bright lights, smells that are imperceptible to others, being touched, being stared at, and close proximity to others. The ADHD aspect of his persona renders him unable to sit, focus and concentrate for more than a few seconds. A combination of all his conditions causes him to behave oddly in other ways. He doesn’t like his hair being cut; he runs outside and spits all over the pavement after each visit to the hairdresser, and sometimes he strips off. He will squash himself behind or under things and in small spaces, he’ll put his fingers over his ears, and I have found him wearing swimming goggles to shut out the daylight when his senses can’t cope with the normal rush of daily information. He bolts in crowded areas and  falls to the floor when frustrated or confused, I believe this is a sensory thing, about his need to know where his body is in space and time, about feeling his whole body against a firm surface when anxiety ridden. But I don’t truly know, and I’m no expert. I’m just his mum.

Callum’s other diagnoses are dyspraxia, dyslexia and synaesthesia, a blending of the senses so that he sees letters in numbers, and numbers in colour, texture, size and sound; he “sees” sound in movement, and describes memories in a rainbow of numbers.

Ironically, I have come to value my son’s differences; I no longer feel a sense of shame and I am proud to say that I’m his mum. I now marvel at some of his abilities, which apparently stem from the very disorders that once seemed to threaten us. His autistic heightened sensory awareness, combined with his kaleidoscopic world of synaesthesia, enhances his memory for patterns. This enables him to play the drums, guitar and saxophone by ear, to write and memorise his own music, to excel in mental math’s and to mimic languages.

There are many people eager to work with Callum, in order to learn more about  such differences from a verbally able child who offers potential insight into the world of  silent autistic children. As for Callum, the prognosis for his future is not only very good, it is marvelously and fascinatingly unique.

In her second article, Eve tells of the trials and tribulations of Callum’s early life at school.

Article first published in SEN Magazine issue 43: November/December 2009.

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