Adult assessment with parent involvment

My Mum is the only one of my parents who has capacity, but is so detached from my life it's untrue. I told her I was taking part in a survey about something or other, and could she answer a few questions about my early years! 

A year or so later, she still has no idea what it was for and that I've beed diagnosed ASD.

Indeed, at our age it's not alway possible and isn't strictly necessary in order to proceed,  but it helps if you still have a parent who can participate. I guess they just have to ask.

I still think it’s ridiculous that autistic adults are expected to get their parents involved in this process. Surely that isn’t done with any other ‘condition’ that a GP deals with? I’m going through the diagnosis process now and they asked if my parents could be involved - and I’m in my fifties! My mum has dementia and my Dad is frankly clueless - so it’s just ridiculous. You can just say no and explain why presumably? That’s what I did.

Mine was of a different time too...but it's surprising how their perception even with all that 'stuff upper lip' and old trauma in the way, can help anyway. Good luck 

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.

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. 

You don't necessarily need a parent to receive a diagnosis (although it does sound like your mum may be able to offer some help?) Officially, in order to meet the diagnostic criteria, they have to have evidence that your symptoms (for lack of a better word) were present since childhood to demonstrate a 'developmental' condition. Although I do think assessors have some discretion.

I had a similar experience, and was quite reluctant to involve my family. In the end, my mum helped with the assessment, but only minimally. (She had a phone call with the assessor, and contributed to a questionnaire.) I was lucky to be assessed by someone particularly open-minded and without a stereotyped view of autism (this was a second opinion after being dismissed by other health professionals).

If you are less confident in the ability of your assessors, it might make you less easy to dismiss if you have additional evidence from childhood. This could be testimony from a sibling, or other person that has known you since childhood. 

I didn't tell my parents about my assessment so they didn't have any involvement

Thank you for posting this, it has been worrying me, I have one surviving parent who is 75, she is starting to get it but is of a different time. My childhood was quite traumatic, my mother would be sectioned under the mental health act, I would be sent to elderly relatives. I never shared how I felt and crying was never encouraged for boys. My wife has known me since teen years and could help much more. My mother isn’t a bad person I just masked and kept quiet. It’s quite damaging when it finally starts to come out. I sent the same form back this week with 4 pages attached to it. Hope all goes well for you.

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.

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.