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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 was diagnosed several days ago. I write page loads of things from my youth. They weren’t all autism trait specific, but they did show what I was like.

    My mum (71) really didn’t remember much about me as her life was traumatic, and she also confused me with siblings. And what she did know she put down to other reasons. However, she wrote some notes down to give my psychologist. There were simple things, like how I spoke and read exceptionally early, that my memory was excellent, that I had one friend, didn’t play with my siblings, didn’t let other people touch my things, how I was matter of fact, quiet etc. She included other things, like how I always dress immaculately, that I have a nice dry sense of humour, that I often appear as if I’m not listening when she talks to me, but she knows that I am.

    Trust that your mother will say the right things, that added up will give a picture of you as a child. It’s not the be all and end all if she doesn’t remember anything. What you can recall will go a long way towards your diagnosis. 

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  • I was diagnosed several days ago. I write page loads of things from my youth. They weren’t all autism trait specific, but they did show what I was like.

    My mum (71) really didn’t remember much about me as her life was traumatic, and she also confused me with siblings. And what she did know she put down to other reasons. However, she wrote some notes down to give my psychologist. There were simple things, like how I spoke and read exceptionally early, that my memory was excellent, that I had one friend, didn’t play with my siblings, didn’t let other people touch my things, how I was matter of fact, quiet etc. She included other things, like how I always dress immaculately, that I have a nice dry sense of humour, that I often appear as if I’m not listening when she talks to me, but she knows that I am.

    Trust that your mother will say the right things, that added up will give a picture of you as a child. It’s not the be all and end all if she doesn’t remember anything. What you can recall will go a long way towards your diagnosis. 

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