How did Aysha spend 16 years of her life undiagnosed?
Aysha sat up late, walked late, learned to read late and still finds many motor skills challenging. At around 5 years of age she was diagnosed as dyspraxic
We blamed dyspraxia for everything. We had no answers for her anxiety and realised that she had learning difficulties but the word autism never actually crossed our minds
Girls are notoriously good at masking their symptoms of autism. As a toddler Aysha would hum loudly to block out the overwhelming sounds and sights of everyday life. She was terrified of birds, scared of unfamiliar people, disliked open spaces and couldn’t cope where there were crowds of people
As she grew older she masked these symptoms, she stopped her loud hum and learned to cope with being overwhelmed. She learned to look at people while they spoke to her, she even started replying to people albeit in one word answers. She soon adopted a host of “social norms” that got her through everyday life
“She’s shy, she’ll grow out of it, she’ll soon catch up” said the comforting, well meaning voices around us
When Aysha turned 16 and after years of being told by school that there was nothing wrong with our child and that I shouldn’t compare her to her high achieving sibling, we decided that a private assessment by an educational psychologist wouldn’t go amiss
The educational psychologist was horrified that her symptoms hadn’t been picked up by teachers and made an urgent referral to mental health services
I remember back to when the referral was made, not being able to say the words mental health. I had always thought I was open minded and never believed in the stigma surrounding mental health issues, but now that my own daughter needed a mental health assessment not only could I not bear to share this, I couldn’t even get the words out of my mouth
15 minutes into the appointment with the senior clinical psychologist at the mental health hospital she turned to Aysha and said “Aysha do you know much about autism? I think you might be autistic”
Aysha and I looked at each other in complete horror, I felt my heart break into a million pieces for my child and more selfishly for all the dreams I held for her future
“The diagnostic process will really only be a formality, I’m pretty sure Aysha is displaying all the signs of autism needed to make an informal diagnosis now” she continued
It took time to digest the information, we had only just been hit by the difficulties listed in the educational psychologist’s report and now this
We prayed with every breath we took that the formal diagnostic would prove otherwise, that it wasn’t really autism
How would she cope? How would we cope? What would people say? What did I do wrong? Why didn’t I take folic acid when expecting her? Why did I vaccinate her? How did I allow 16 years to pass without her being diagnosed? Was I really the worst mother in the world? Would I be able to face anybody ever again after failing at parenthood so badly?
I won’t even attempt to describe what we went through
The formal diagnostics were carried out and autism became part of our lives. We stopped telling Aysha to “grow up” we stopped telling her to act appropriately to her age, we stopped demanding that she made conversation with people and in the process I wasn’t sure I’d survive the guilt
But here we are a year on doing what we can to right the 16 years of wrong, to support her the best we can and to try our level best to understand and meet her needs
We may have been 16 years late and unable turn back the hands of time but maybe we can spread awareness to ensure nobody else goes through what our Aysha suffered and to encourage parents to listen to their inner voice…. Nobody is an expert in your child, except you, trust your instinct
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