When I gave birth to my first daughter in March 2009, I never dreamt that eleven years later I’d be praying she’d be diagnosed with autism.
I’d always believed labelling children should be avoided at all costs. Why place limits on their future potential?
But the reality is that, when push came to shove, the only thing scarier to me than a diagnosis for my daughter was the prospect of not getting one at all.
During my first pregnancy, disability was never really on my radar.
In my NCT class, the teacher read Emily Perl Kingsley’s famous ‘Welcome to Holland’ poem, which compares the parents of a child with a disability to people who have planned a holiday in Italy and ended up going to the Netherlands instead. The takeaway message is that life ‘in Holland’ isn’t worse, it’s simply different.
As my baby grew into a quirky toddler, I noticed some differences but my fears were abstract, fleeting and impossible to pin down
I remember being moved by the words but at that point I was pretty confident about our final destination. My 20-week scan was reassuringly ordinary and when Sophie arrived screaming into the world, there was no hint of any problem.
As my baby grew into a quirky toddler, I noticed some differences but my fears were abstract, fleeting and impossible to pin down. It took me six years to join the dots and see that her individual eccentricities might add up to one bigger picture – an autism spectrum disorder (ASD).
When the word ‘autistic’ first popped into my mind, I quickly dismissed it as ridiculous. It was a condition I associated with boys and the autism I thought I knew didn’t seem to fit my gorgeous, loving little girl.
There was no single lightbulb moment. Instead, the idea slowly germinated like a seed. The more I read about ASD and the way it presented in girls, the more I saw my eldest child reflected in the words. I guarded my thoughts fiercely, frightened that if I said them out loud, I’d have to acknowledge they might actually be right.
When I first broached the subject with my husband, he thought I was jumping on some kind of ‘disability bandwagon’. As Sophie was our first child, we had nothing to compare her behaviour to. But as her younger sister, Jessica, got older and started school herself, the differences between them became more pronounced.
We soon realised not every parent was routinely pulled aside by their child’s teacher for ‘a quiet word’. And not all kids would do anything to avoid the school playground or be reduced to hysterical tears by the feeling of a seam in their socks.
During yet another parent-teacher meeting to discuss Sophie’s behaviour, I finally let the genie out of the bottle and suggested she might have ASD. The shift was palpable and I could see that in the teacher’s mind, Sophie suddenly started to make sense.
The diagnosis process lay before me as a terrifying, unknown path I was in no hurry to walk along
At first, things moved quite quickly. I met with the school’s SENCO and strategies were put in place to make her life at school that little bit easier.
My first instinct was that it was enough for us to know. The diagnosis process lay before me as a terrifying, unknown path I was in no hurry to walk along. But as the months went on, I realised that, while my daughter was already getting the support she needed in her single-form entry Catholic primary, the real challenges would come when she moved up to high school.
Without a diagnosis to ensure my child got the extra attention she needed, would we be throwing her to the wolves?
When I headed to the GP to ask for a referral, I was ready for a battle, armed with a notepad full of bullet points. Just two minutes into my speech, she agreed to refer Sophie for assessment and that was that. However, if I thought getting the diagnosis would be as quick and painless, I was wrong.
First came the soul-destroying questionnaires where I had to detail all of Sophie’s weaknesses and challenges. Every word felt like a betrayal – as her mum I should have been championing her talents and strengths. No one wants to admit their child isn’t perfect, never mind list all their differences with heartbreakingly brutal honesty.
I felt like a fraud talking to parents of autistic children, just in case the whole thing was a figment of my imagination
And then came the waiting. The period between referral and diagnosis is an isolating no-man’s land. You don’t quite belong anywhere. I felt like a fraud talking to parents of autistic children, just in case the whole thing was a figment of my imagination. But explaining how I felt to friends with neurotypical children also didn’t feel quite right.
Surveys suggest the typical wait for a child to be diagnosed with autism in the UK is more than three years. We got to 18 months before we cracked and rang the centre she had been referred to. One awkward conversation later, it transpired that they had never received the necessary paperwork from our daughter’s school.
All the time we had believed she was slowly working her way up through the waiting list, she hadn’t even been added to the bottom.
In the end, we secured an assessment through good, old-fashioned pester power. After repeated phone calls to her direct line, one worn-down professional agreed to give us the next available assessment and, just like that, we were finally in.
One of the biggest flaws in the system is it seems to be designed to ignore you unless you kick up a fuss. How many children with ASD have fallen through the cracks simply because they weren’t born to assertive parents?
The assessment itself is a gruelling ordeal. On the day, I woke up sick with nerves, convinced we’d hit a dead end. Heading to the appointment, I realised that a diagnosis was the only real way to get understanding and support – what would happen if that door was slammed in our face?
I realise now that autism is as much a part of my daughter as the colour of her eyes or the freckles on the nose
For two long hours, a psychologist, consultant and speech therapist grilled us on every aspect of our daughter. When they went out to consider their verdict, I felt like a defendant in the dock.
Just minutes later, they returned with a unanimous decision – my beautiful, kind, unique little girl had an autism spectrum disorder. The relief flooded me like a wave but with it there was also tremendous sadness. It simply confirmed what we already knew – that life for our daughter would always be more difficult than we had hoped.
Years ago, Sophie’s official diagnosis would have been Asperger’s Syndrome but times have changed and now it is simply referred to as ASD.
But whatever the exact wording on the label, I realise now that autism is as much a part of my daughter as the colour of her eyes or the freckles on her nose. It has always been there and it always will be but now we know its name, we can help make sure it never holds her back.