Five things I wish I had known on diagnosis day

Posted by iChild, March 15, 2017 2:18 PM

By Mummy Times Two

These days I live, breathe and eat all things Autism. My daughter (now nine) has a diagnosis of Asperger's Syndrome, and I'm an Autism Specialist Teacher. Seven years ago, when she was first diagnosed, I had much less knowledge. So this is, with seven years of information gathering in a personal and professional capacity, what I wish I had known back then.


There is a saying in the autism world, "if you've met one child with autism ... you've met one child with autism." Sounds a bit odd, right? But basically what it means is that autism affects each child differently, and that while there are core difficulties that affect everyone on the spectrum these often manifest in different ways.

Autism is part of what makes things tricky for my daughter but it's also part of what makes her wonderful. She sees the world in a different way to most people, notices things I often miss and says it as she sees it. I always know where I stand, and that is very refreshing!

A lot of the worries I had about my daughter's development didn't come true. At two, I remember being terrified that she would never make friends, I thought she would struggle to cope in mainstream education and I doubted she would ever cope in busy (more than ten people in a room) places. At nine she has friends, copes brilliantly in mainstream, and with support and preparation can cope wherever we go. Sure, we have bad days, there are tears and meltdowns. But there is far more positive than negative.

The system isn't always fair. In order to get the help your child needs you will need to be on the ball, understand what they are entitled to and yes, at times, even be a bit pushy. It isn't the way it should be, and hopefully won't always be the case, but right now knowing the system really does help. Make sure you keep records in meetings, chase people regularly for answers, and understand what you are entitled to: there should be a section on your Local Education Authority's website called 'Our Local Offer' which will help. The National Autistic Society's helpline is also a great source of advice.

Having a "tribe" really helps. For a long time we really struggled to find other girls on the Spectrum (it's even harder with girls as there are fewer of them, approximately one girl is diagnosed to every ten boys). But in the last couple of years we've been lucky to come across more - both in person and online. This has made a huge difference, and has really helped both us and our daughter. Talking to someone treading a similar path can be really helpful. Local support groups, Facebook groups and your area's Autism support team can all be really helpful in helping you with this.

 A diagnosis often feels overwhelming, a little like stepping into an unknown world. But it is also a positive, because with a diagnosis comes understanding, access (sometimes at least) to support and the opportunity to find out more about how to help your child's development. Take one day at a time, believe in yourself and believe in your child.

 You will get there.

Mummy Times Two


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