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Daughter recently diagnosed and family member rejecting the diagnosis

NAS87577

Hi everyone. I’m new to the community. My 8 year old daughter was diagnosed with autism and ADHD this week. We suspected she may be on the spectrum and paid for private testing as the wait with CAMHS is up to 18 months where we live. Still, we were shocked when it was confirmed. I guess I had been stressing myself out thinking they would just say her behaviours were down to something we had done or not done as parents. I know that’s crazy, but perhaps I was just trying to avoid reality. I’m at a bit of a loss at the moment waiting for the full report with the recommendations on how we and her school can support her. What’s made it worse is that my sister, who my daughter is very close to, has basically said the person who tested my daughter clearly doesn’t know what’s she talking about and that my daughter is a normal 8 year old who we have now labelled and will make paranoid. Now I'm worrying that what she has said is true. I researched alot before I chose the organisation to conduct the tests and they seemed good as they specialised in autism in girls. Now I am doubting it all. My sister has told her children that my daughter isn’t really autistic or have adhd and so they basically didn’t reply when my little girl told her favourite cousin she was autistic. For me, that seemed like a massive rejection of my daughter who wanted to tell her cousin because she adores him. I really needed my sister to be there to support me and my daughter but it seems she won’t be, even though we have been so close throughout our lives. My sister works in a secondary school and fiercely supports the SEN children she works with. This just makes it so much more difficult to understand why she is rejecting my daughter’s diagnosis. I just wanted to get it off my chest and ask how other people have dealt with their families rejecting a diagnosis in this way? Also, I’m a bit overwhelmed with all the information out there, and how I can help my daughter to understand her diagnosis. Not sure where to start really. Can anyone offer some advice?

Parents

  • Hi, It’s difficult when family members do not accept a diagnosis. I can also relate to doubting the diagnosis at times, it can take time to get used to. But it sounds like your daughter was assessed by a professional team and I presume you or someone else suspected she may be autistic which resulted in the assessment?
    There are a few reasons your sister may struggle to accept the diagnosis. It is only recently that people have started to understand that autism presents differently in girls and now more and more people that might have been ‘missed’ a few years ago are being diagnosed. Is it possible the children your sister works with require a higher level of support so that when she compares your daughter with them it makes her feel the diagnosis does not fit? Also ADHD and autism can mask each other st times making it more difficult to spot the signs. Finally (and i’m not suggesting this is the case) people who are autistic themselves (but do not know it) can sometimes have a hard time accepting someone else is autistic as they share traits and perceive these as ‘normal’ ( can’t think of better word). I hope you can at least get your sister to not openly challenge your daughter’s autistic identity in front of her children- this could be detrimental- it’s her right to disagree with the diagnosis but i don’t think it is fair for her to share this with her children or your daughter. I would insist on that. It’s so important that your daughter feels validated and that she can grow up knowing she is autistic- knowing  helps. I was diagnosed much later at age 25 (even though thinking back it seems crazy I was not diagnosed sooner) and I think a lot of upset snd damage could have been avoided by knowing. 
    I hope you can find an agreement with your sister so that she at least does not show her doubt of the diagnosis in front of the children 

Reply

  • Hi, It’s difficult when family members do not accept a diagnosis. I can also relate to doubting the diagnosis at times, it can take time to get used to. But it sounds like your daughter was assessed by a professional team and I presume you or someone else suspected she may be autistic which resulted in the assessment?
    There are a few reasons your sister may struggle to accept the diagnosis. It is only recently that people have started to understand that autism presents differently in girls and now more and more people that might have been ‘missed’ a few years ago are being diagnosed. Is it possible the children your sister works with require a higher level of support so that when she compares your daughter with them it makes her feel the diagnosis does not fit? Also ADHD and autism can mask each other st times making it more difficult to spot the signs. Finally (and i’m not suggesting this is the case) people who are autistic themselves (but do not know it) can sometimes have a hard time accepting someone else is autistic as they share traits and perceive these as ‘normal’ ( can’t think of better word). I hope you can at least get your sister to not openly challenge your daughter’s autistic identity in front of her children- this could be detrimental- it’s her right to disagree with the diagnosis but i don’t think it is fair for her to share this with her children or your daughter. I would insist on that. It’s so important that your daughter feels validated and that she can grow up knowing she is autistic- knowing  helps. I was diagnosed much later at age 25 (even though thinking back it seems crazy I was not diagnosed sooner) and I think a lot of upset snd damage could have been avoided by knowing. 
    I hope you can find an agreement with your sister so that she at least does not show her doubt of the diagnosis in front of the children 

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