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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 received my diagnosis at the age of 30 and my mum was involved in the process. Like many, she wasn’t looking out for signs in me as a child and instead just took me for who I was and viewed many of the potential indicators as just my quirks.

    My mum was very honest with the diagnosis team about the whole idea of some of her memories being of 30 years ago and so some questions she just couldn’t answer. In some cases she spoke about more recent example of certain behaviours. One thing she told me after was that the questions asked were of things that she’d never considered. They helped guide her to what they were looking to see so to speak. I don’t mean that they were guiding her towards answers that would paint me as autistic, but rather, they helped her to revisit her memories in a way that she hadn’t necessarily viewed them from. She was very complementary of the guidance she had, but perhaps it was because she was so open about not knowing what to look for. 

    In some cases, my mum would have had no knowledge of some of the difficulties I faced growing up, as not everything in life is observed, so I suppose that is where my account came in.

    I did speak to my mum a lot in the build up to the diagnosis process, and explained what it meant to me. This wasn’t something that I just stumbled on. Like many, I think I’d known for a long time. I just made sure to be open and honest with her (which took a lot of bravery to be honest as  open conversation is something I can find difficult when it’s about me). But what I think this did, was inform my mum of just how important this was for me and it helped remove some of the potential stereotypes that she, like many, potentially had in mind when considering what ASD can look like.

    This may not be useful to you, and I apologise if it isn’t, but I just wanted to try and give you a picture of my experiences. My mum is hugely supportive, but she didn’t have a good understanding of ASD and the complexities that go with it and she wasn’t looking out for these in me as a child. I still received a diagnosis and my mum is learning more each day (as am I). I think open conversation with between my mum and I, as well as her and the professionals, potentially played a large role in this.

Reply

  • I received my diagnosis at the age of 30 and my mum was involved in the process. Like many, she wasn’t looking out for signs in me as a child and instead just took me for who I was and viewed many of the potential indicators as just my quirks.

    My mum was very honest with the diagnosis team about the whole idea of some of her memories being of 30 years ago and so some questions she just couldn’t answer. In some cases she spoke about more recent example of certain behaviours. One thing she told me after was that the questions asked were of things that she’d never considered. They helped guide her to what they were looking to see so to speak. I don’t mean that they were guiding her towards answers that would paint me as autistic, but rather, they helped her to revisit her memories in a way that she hadn’t necessarily viewed them from. She was very complementary of the guidance she had, but perhaps it was because she was so open about not knowing what to look for. 

    In some cases, my mum would have had no knowledge of some of the difficulties I faced growing up, as not everything in life is observed, so I suppose that is where my account came in.

    I did speak to my mum a lot in the build up to the diagnosis process, and explained what it meant to me. This wasn’t something that I just stumbled on. Like many, I think I’d known for a long time. I just made sure to be open and honest with her (which took a lot of bravery to be honest as  open conversation is something I can find difficult when it’s about me). But what I think this did, was inform my mum of just how important this was for me and it helped remove some of the potential stereotypes that she, like many, potentially had in mind when considering what ASD can look like.

    This may not be useful to you, and I apologise if it isn’t, but I just wanted to try and give you a picture of my experiences. My mum is hugely supportive, but she didn’t have a good understanding of ASD and the complexities that go with it and she wasn’t looking out for these in me as a child. I still received a diagnosis and my mum is learning more each day (as am I). I think open conversation with between my mum and I, as well as her and the professionals, potentially played a large role in this.

Children
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