I had the pleasure of interviewing Nicola recently about her daughter Emily and their families journey with autism.
Here’s what she had to say:-
Please tell me a bit about yourself and your family.
We are a family of 4, consisting of me (mum), my husband (dad) and our daughter Emily 6 and Son Charlie 4.
We had no knowledge of Autism until we went to seek our GP’s advice back in 2012-13.
Tell us a bit about your daughters autism diagnosis. What was her age, what made you seek a diagnosis, how did you feel before and after?
When Emily was around 18 months of age she stopped making eye contact, never listened or turned anymore when calling her name, the few words that she had learnt mamma dadda stopped. A family member came to me (Grandparent) and said something along the lines of something’s not quite right she’s changed. We decided to take Emily to our GP and he said she could have signs but to wait for her 2 year assessment. We did and then it became more apparent, we were then referred on to CDC. That was the start of our rollercoaster ride. Emotions were all over appointments everywhere , I will not lie it was a trying time for us as a family.
Tell us the best and worst thing about autism.
The best thing about Autism? I think would be how we get to see how Emily sees the world around her, her love for Natural things, seeing her face light up and hand flapping in delight at the sight of the mighty ocean. The worst things about Autism are the frustration fear anxiety that lead to terrible uncontrollable meltdowns. The feeling of helplessness as a parent when we don’t always know her wants needs or what she is feeling. The sleepless nights,anxiety and her loneliness she doesn’t have one friend (except her brother and me and her dad. The comparison with her NT cousin who is the same age.
Tell us three things that you most admire about your daughter.
What we admire most about Emily is that she is strong willed has fierce determination and she tries her best to be independent and her huge beautiful heart. She gives the best hugs.
Tell us about the biggest achievement you or your child have made recently.
Her biggest achievement recently is that we are getting one word answers to our questions, it’s only yes or no, but it’s a huge leap forward for her.
Her eye contact has improved so much to.
What are your hopes for the future?
Our hopes for the future is that Emily will find more ways to help communicate with us and that she will flourish in her new school – finally starting SEN school 30th April after years of trying. I try not to think to far in the future!
Do you know of many other girls with autism?
We only know one girl who is recently diagnosed at 12. She is classed as high functioning.
What’s the one thing you wish people understood about autism/autism in girls?
We wish people would take note that just because she can’t speak doesn’t mean that she doesn’t understand. Also one colleague at work was talking the other day and though Autism in girls was down to hormones. I quickly put her right but there is no where near enough information out there.
Tell us why you feel it’s important to raise awareness of ‘our side of the spectrum’ / severe autism in girls.
It is really important to raise awareness of severe autism in girls because no one seems to know about it. It’s alway boys they associate with autism or high functioning that’s talked about and I fear that our girls are being excluded.
Thank you so much to Nicola for taking part in our series, for sharing her story with us and for helping raise awareness and spread acceptance of autism in girls and ‘our side of the spectrum’
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