How have people dealt with children being diagnosed with ASD and the feelings of grief and worry that come with it and with dealing with people who don't understand or accept the situation ?
How have people dealt with children being diagnosed with ASD and the feelings of grief and worry that come with it and with dealing with people who don't understand or accept the situation ?
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3 Replies
I cried for a week! It took a lot longer for me to adjust though. Back then (almost 20 years ago) there was zero information and zero help. I had no adults with autism to have any comprehension of what to expect.
Things are a lot better now, there is a lot more information , some great adults with autism on Facebook to look up to and much more early interventions, but still is a huge adjustment.
As far as dealing with people who don't believe or accept the diagnosis. It's as big a shock for them, they don't live it 24/7 so it is easy for them to pretend/doubt it away. Give them information pamphlets to read, take them to appointments, talk about what autism is and how that relates to your child. It's a process. Remember they have there own dreams and expectations of who your child is going to be, just like you did. If someone says 'she doesn't look autistic' say 'what do you think autism looks like'. Question them on there reasoning and explain why they are wrong etc.
My daughter was diagnosed in January with Aspergers and ADHD. I was in shock for a while but she is doing fantastic now, there's so much support out there these days. When I told my mum she said 'I hope she can live a normal life' which annoyed me because ASD children can do anything they want. Just because she is autistic doesn't mean she is held back, in fact it's the opposite, she is due to start school next year and they are concerned that she is going to be bored because she is advanced for her age. Each child is amazing and so clever. I was not sad that she has it, i was just relieved that I knew it wasn't that she was "naughty" or I was a crappy parent, it was that she wasn't understood. Since going to the OT and early intervention she has really come along in leaps and bounds.
I'm dealing with this at the moment too. After being told by his kindy teachers he was "just naughty" for so long...we knew something wasn't ok. And people saying "he can't be autistic" because he isn't a stereotype...we are right at the beginning, still waiting for OT and speech.
I don't think I'm surprised TBH...What I'm struggling with is watching him try SO hard to fit in with his peers, wanting SO much to fit in and not managing to and not understanding why...trying to join in but not understanding how to, and not knowing quite how to help him...