The Autism world has changed since Aysh was diagnosed back in 2004. The diagnostic criteria has changed and the spectrum has shifted. More children and young people are being recognised and accessing supports.
When Aysh was diagnosed autism was rarely heard about. Very few people had stories about their neighbour’s niece or their second cousin’s friend. Instead people stepped back. They didn’t know what to say. No one really knew the prognosis or how to answer our questions about the future.
We found ourselves relating to the disability community – communication aids, wheelchairs and supported living – and less to the world of learning difficulty and mainstream schooling.
These days those worlds are more blended. Changes in public perception and stigma (goodbye refrigerator mothers!) have enabled individuals like Aysh to be seen in the broader community.
Although our diagnosis was a quick and smooth one, our experience was still traumatic and grief-laden. A diagnosis hits hard – regardless of how well you think you are prepared for it.
Ride the wave, seek the support and allow yourself to grieve. A diagnosis does not change who your child is, but it may change how their journey looks.
Sending lots of ❤️ to newly diagnosed families – and families who never gave themselves time and permission to grieve.
*refrigerator mothers was a term used in the 60s as an explanation for autism – mothers who were cold, unloving and career driven. You can google it if you want but warning – it’s hurtful reading!