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Pre-diagnosis support

H robbo

Hi, my daughter is 3 years and is autistic though we do not have a diagnosis yet. I'm finding it quite lonely/ challenging to share experiences with other parents as no-one I know is in the same situation. It seems to be the case that without diagnosis other parents think 'she'll catch up' or 'be OK'. And even though I know they mean well, this isn't helpful at all. Has anyone experienced this and does anyone have a community space for parents to learn, share and support each other? Thanks  Heidi 

Parents

  • Hi Heidi. I was diagnosed when I was a teen, now mid thirties... my wife and I are currently in the same situation with our 6 year old as we look for a diagnosis (only to be told it was the pandemic which caused her lack of social skills) which wasn't the case as she struggled and was showing signs in various places before the pandemic, since she was very young - so many years ago. I don't have a solution unfortunately as we are still searching ourselves for help. We simply keep pushing the doctor to ask the CDC to reconsider the original referral and actually see the struggles our daughter has. I hope you do find some support, it can be tough 

  • in reply to Twinn

    Hey Twinn, thank you for sharing, it has helped hearing your story, thank you for sharing your experience. Yes, it is tough - this in-between ground - I wish you all the best and I will let you know if I find anything helpful in the meantime. 

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