Adult assessment with parent involvment

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 would just ask your mum to be upfront about the fact that she may have missed stuff but give the best she can remember to the best of her ability.

    I was 56 when going through this and had had a problematic relationship with my mother. She was in any case 81 and frail at the time. I was reluctant at first to involved her for all those reasons. But she surprised me with what she could remember. Thoes little bits of information helped enormously.

    At the end of the day many are assessed without parental input for many reasons and when assessing adults they tend to rely primarily on your experience and presentation. But that said anything your mum remembers, however insignificant you both might th might think it is, might be useful. Just let her give what she can. It'll be ok.

Reply
  • I would just ask your mum to be upfront about the fact that she may have missed stuff but give the best she can remember to the best of her ability.

    I was 56 when going through this and had had a problematic relationship with my mother. She was in any case 81 and frail at the time. I was reluctant at first to involved her for all those reasons. But she surprised me with what she could remember. Thoes little bits of information helped enormously.

    At the end of the day many are assessed without parental input for many reasons and when assessing adults they tend to rely primarily on your experience and presentation. But that said anything your mum remembers, however insignificant you both might th might think it is, might be useful. Just let her give what she can. It'll be ok.

Children
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