Receiving a diagnosis of Autism Spectrum Disorder (ASD) for your child can be an overwhelming and emotional time.
It might come as a shock or it could come after a long time of searching for answers. The emotional fall out could include feelings such as sadness, grief or even relief.
Let yourself feel all those feelings, don’t bottle them up as this won’t help you or your child in the long run.
Stacey-Lee had a long hard road getting a diagnosis for her 9 year old son. Despite this she still said processing it took a long time and she’s not sure that ever really stops. “With the diagnosis came many mixed feelings. Relief that the fight for recognition was over/worthwhile. Happiness that now doors would open for support. Confusion and overwhelm of what’s next.” She says her journey was helped by friends and family with children on the spectrum.
Carmen has three boys on the spectrum and for her, the experience of receiving each diagnosis was different. For her eldest and youngest she says she felt relief. For her middle child however she recalls grieving. “It was hard to sit and witness the testing, knowing where it was headed.”
Renée’s daughter was five when she was diagnosis and it was life changing. “It was both devastating and a huge relief. We suddenly understood the ‘why’ behind all those years of questions. She wasn’t just a difficult kid. We weren’t just terrible parents. She has ASD. Her quirks and challenges made sense; and now we had a way to help the world make sense to her.”
All three mums recommend becoming as informed as you can about your child’s diagnosis and what that means moving forward.
Stacey-Lee advises seeking out all the doors that are now open to you and your child. “Find what’s available in terms of support and use them. First and foremost, notify the school of the diagnosis. There will be forms!” she warns.
Carmen says its important to understand what it means for your child. “Be realistic, read up on the traits that are concerning and try the various advice. Even if the diagnosis isn’t formal, those can help. Write a diary or journal of behaviours and reactions and the triggers. A child melting down is very different to a child having a tantrum,” she says from experience.
“Essentially realise that we are ALL on the spectrum somewhere and the diagnosis is a guideline to help you understand your child’s quirks and “superpowers” as we call them and find ways to help them live in a world that struggles to understand them. I don’t always get what they’re on about but I accept they see things differently,” Carmen admits.
Renée also recommends not comparing your child to other’s with a diagnosis. She has written a great piece on embracing disability here.
Stacey-Lee has some final wise words of advice: “Trust your Mumma gut feelings. Push until you are heard by the right people. Don’t be afraid to take help.”
Did you know?
Currently the new national diagnostic guidelines for ASD are open for community consultation. You can find out how to have your say here.