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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

  • Depending on the age of your daughter, this will sound quite cold, you could record evidence of autistic behaviour on your smart phone. Also, or instead, keep a diary of her behaviour and problems. If you look up, online, the ICD-11 diagnostic criteria for autism, you can slot your daughter's 'symptoms' into the relevant formal criteria. This will give you a dossier of information to submit to the relevant authorities. The ICD system is the most used diagnostic manual in the UK. 

    Intelligent autistics adapt to societal expectations by observing and copying. This is done consciously and involves a great deal of mental effort, which leads to exhaustion, melt-downs, shut-downs, and sometimes poor mental health. Autism is often characterised by social inabilities, but many autistics can do most or all the things neurotypical people do, except that we have to expend huge amounts of effort in doing them. High masking autistic children tend to exert themselves to be sociable in public, especially at school, but then at home they react to the exhaustion by needing to have lots of time on their own, or by reactive melt-downs. This is quite well known and has been written about in books and scholarly papers. A look on Google Scholar should give you access to reams of medical and sociological literature to bolster your case.

Reply

  • Depending on the age of your daughter, this will sound quite cold, you could record evidence of autistic behaviour on your smart phone. Also, or instead, keep a diary of her behaviour and problems. If you look up, online, the ICD-11 diagnostic criteria for autism, you can slot your daughter's 'symptoms' into the relevant formal criteria. This will give you a dossier of information to submit to the relevant authorities. The ICD system is the most used diagnostic manual in the UK. 

    Intelligent autistics adapt to societal expectations by observing and copying. This is done consciously and involves a great deal of mental effort, which leads to exhaustion, melt-downs, shut-downs, and sometimes poor mental health. Autism is often characterised by social inabilities, but many autistics can do most or all the things neurotypical people do, except that we have to expend huge amounts of effort in doing them. High masking autistic children tend to exert themselves to be sociable in public, especially at school, but then at home they react to the exhaustion by needing to have lots of time on their own, or by reactive melt-downs. This is quite well known and has been written about in books and scholarly papers. A look on Google Scholar should give you access to reams of medical and sociological literature to bolster your case.

Children
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