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Challenge of getting a diagnosis for my daughter when she masks so well when she is not at home...

J.B.

Hi all, seeking advice please, particularly from UK based parents/carers perhaps going through a similar process. For those of you with undiagnosed autistic children, especially daughters, who mask so well at school yet all the behaviours are present at home, have you managed to receive a diagnosis? Even pursuing a private assessment is proving difficult as school say there are no difficulties/differences present and assessment requires behaviours observed in multiple settings. I feel like we are just going round in circles and fighting a losing battle. I'm seeking a diagnosis for my daughter so she can hopefully understand herself better. I have researched a lot about autism in girls and women and so many accounts of women getting diagnosed later in life state how they wish they had been diagnosed sooner, as it would have helped them to know why they found certain things in life difficult or why they experienced certain things differently. Thanks in advance.

Parents

  • Please don't take this the wrong way. I'm giving my thoughts here and it's fine if you don't agree.

    Firstly, I have a few questions - you don't have to answer me, they're just things I thought worth asking. Does your daughter want a diagnosis? What is the aim of getting an official diagnosis? Is there some additional help/support that she needs but isn't getting? If so is there another way of getting it? Is it the GP who won't refer unless school agree, if so have you tried a different GP?

    You mention some late diagnosed women wishing they'd been diagnosed earlier. I was diagnosed at 48 and have no regrets about it not being earlier. Everyone is different and not everyone needs a diagnosis to make sense of themselves.

    Self-awareness can be obtained through self identification without the need for an assessment - there are lots of resources to read and tests to complete that could provide more understanding. Would this be enough?

    Obviously if you and your daughter really want or need to take it forward to a diagnosis that's fine. Just throwing out a few thoughts. 

Reply

  • Please don't take this the wrong way. I'm giving my thoughts here and it's fine if you don't agree.

    Firstly, I have a few questions - you don't have to answer me, they're just things I thought worth asking. Does your daughter want a diagnosis? What is the aim of getting an official diagnosis? Is there some additional help/support that she needs but isn't getting? If so is there another way of getting it? Is it the GP who won't refer unless school agree, if so have you tried a different GP?

    You mention some late diagnosed women wishing they'd been diagnosed earlier. I was diagnosed at 48 and have no regrets about it not being earlier. Everyone is different and not everyone needs a diagnosis to make sense of themselves.

    Self-awareness can be obtained through self identification without the need for an assessment - there are lots of resources to read and tests to complete that could provide more understanding. Would this be enough?

    Obviously if you and your daughter really want or need to take it forward to a diagnosis that's fine. Just throwing out a few thoughts. 

Children
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