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Adult assessment with parent involvment

awkwardsomeone

Hi there,

I have recently taken the plunge and requested I be assessed for autism at the age of 30. However, the GP has sent me a form asking whether a parent is available for a long phonecall to discuss my early development. I'm stumped because obviously my family missed every clue and I had no idea until my mid-20s that I could possibly be neurodivergent.

My mum is supportive now and says she is beginning to see things about autism that remind her of me. However she still isn't very informed yet, has very poor memory of my childhood (it was a traumatic time) and I just don't think she is a reliable narrator of my early life. I have lived in a different country for years and don't see her much and she knows very little of my inner life and my day to day. She's not a bad or dismissive person I just have been conditioned by overall family dynamics to barely share my real thoughts and feelings.

Since getting the form I feel very upset thinking about how little my family knows me because I have been masking heavily and withholding my emotions from my family from an extremely young age. The "culture" of our family is to deny our own feelings and pretend everything is okay so a lot of my discomfort was very internal or held in until I could be in private. I did get diagnosed with depression/anxiety in my teens so there was something visible eventually. I am worried I have masked too well for my own good to be able to get diagnosed - especially if they put any weight on parental opinions.

I would like to hear from any autistic adults who had their (uninformed) parents involved in the diagnostic process. I feel stressed about having my life narrated from outside. I do have one autistic friend who said her parents wrote a letter and it was pretty rubbish and unsupportive but she still got her diagnosis - so there is hope. 

Thanks.

Parents

  • I just received my diagnosis a few days ago, age 47. My parents died years ago, and although I have two much older brothers, one has been estranged from the family for a long time, and the other is fully supportive but didn’t see anything unusual about me as a child. I explained this on my form, and instead wrote a five-page document about what I knew of my early years and everything I remembered about my childhood and teenage years. However, because I masked and internalised so much, I don’t think my parents (or any other family members) would have realised how difficult things were for me.

    Anyway, to get to my point… this was accepted by the assessment team without question, and I still got my ASD diagnosis. Perhaps if you explain that your mum wouldn’t be in a position to provide accurate information, hopefully this will be accepted. I don’t think parental involvement is essential when you are seeking a diagnosis as an adult. Good luck and best wishes. 

Reply

  • I just received my diagnosis a few days ago, age 47. My parents died years ago, and although I have two much older brothers, one has been estranged from the family for a long time, and the other is fully supportive but didn’t see anything unusual about me as a child. I explained this on my form, and instead wrote a five-page document about what I knew of my early years and everything I remembered about my childhood and teenage years. However, because I masked and internalised so much, I don’t think my parents (or any other family members) would have realised how difficult things were for me.

    Anyway, to get to my point… this was accepted by the assessment team without question, and I still got my ASD diagnosis. Perhaps if you explain that your mum wouldn’t be in a position to provide accurate information, hopefully this will be accepted. I don’t think parental involvement is essential when you are seeking a diagnosis as an adult. Good luck and best wishes. 

Children
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