The Autism Diagnosis
In February 2004, when David was about 20 months old, we visited a developmental specialist as we were concerned that David may have autism. We had to wait two agonising, soul-stealing months before we secured an appointment with her to determine if he had autism. When I close my eyes and cast my memory back to that fateful day, I can still see her sitting behind her large desk as she delivered the diagnosis of autism that destroyed the more or less normal path we thought we were taking.
The outcome of this visit turned into a surreal nightmare from which there was no escape. What she gave us was not merely an autism diagnosis, it was more like a death sentence. In a perfectly calm, matter-of-fact voice, she uttered this dreadful news and advice: ‘He will never speak, go to school, be toilet-trained, have friends, get married, or hold down a job. Take out an insurance policy and see a psychologist. He has autism.
‘I hear you’re pregnant,’ she added casually. ‘I don’t know what to tell you. I guess you can go for genetic testing. No guarantees, unfortunately.’ Your unborn child may also have autism.
Her parting words to us?
‘Goodbye and good luck.’
She turned and left for another appointment.
We finally had our autism diagnosis, delivered in cold and brutal language. Before she spoke those fateful words, we had still had hope that everything would turn out right. Before the gavel strikes and the words leave the judge’s lips, the sentence is neither legal nor official. But now the developmental specialist’s gavel had struck, the words had left her mouth, and the sentence had been pronounced. ‘Autism!’
All our hope dissipated into dust. Autism felt so final and so permanent.
As hope deserted us, the vacuum it left behind drew in fear and sadness … great sadness, and a sense of loss beyond description. My idyllic dream of a happy family was shattered by the diagnosis of autism. At that moment, I wanted to die – with no thought of my husband, child or unborn child. I had always wanted a small gap between my kids as it would be nice for them to be close in age while growing up. It was all ruined by autism.
As the developmental specialist dismissed us, it felt as if she’d delivered a life sentence of autism and we left her office reeling in shock. There was no social worker, family member, parent or professional working in autism spectrum disorder (ASD) or autism present to wipe my tears, hold my hand or offer words of wisdom; and there had certainly not been any mention of treatment options. And how did I deal with this devastating news knowing that inside me I was carrying my next child?
My beloved David had vanished into himself … a place where I couldn’t reach him. A place this doctor labelled autism.
My nice, ‘normal’ world collapsed. Mourning the ‘death’ of my firstborn, and believing I’d never be able to have a normal relationship with him, I was plunged into severe sorrow and defeat because of his autism diagnosis. I lay wounded on the floor, sobbing for hours on end, crying oceans of tears, mourning what felt like a living death after the autism diagnosis.
The vacuum of autism
Another reason why we experienced autism as a social vacuum was that, when we first received David’s autism diagnosis, our initial instinct was to hide him, the label ‘autism’ and ourselves from the rest of the world.
Autism thus swallowed David very quickly, and it was as if it had cruelly left us with an empty shell and an unreachable soul. We still sometimes wonder when it was, exactly, that autism came to take David away from us. If we could mark a specific date, we wouldn’t only remember the loss but would also have an annual ‘autism is treatable’ party to celebrate the victories we’ve experienced since then.
The period before the autism diagnosis was that much more unbearable because David was a first child. With a first child, you are still learning about motherhood and how to deal with a baby. You don’t always know what’s wrong when they become sick; and initially you panic because they can’t tell you how they feel. At about three years, they may be able to tell you their tummy, ear or head hurts and life becomes easier for parents as far as being able to help their child is concerned. However, David had lost his speech and had autism – all he had left was crying and episodes of extreme behaviour. And although we didn’t know it then, it would be many years before he would communicate – even his basic needs. Autism impaired his ability to communicate. For new parents, and particularly those who can’t afford or don’t receive the necessary support from professionals or family, this can be frightening, confusing and immobilising. Today, I am passionate about helping other parents whose children receive an autism diagnosis as I have the information to guide and support them on their autism journey.
