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Involvement of family member in the autism assessment

Munchkin

Hi, I am wondering if anyone can help me understand what the role of the family member is in the autism assessment for an adult. 

Particularly I am worrying about having them present for the entire assessment, I am unsure I would feel I could speak freely. 

Also what sort of questions will they ask and how much credence will this be given over what I self report?

So essentially my family situation is a bit difficult and they aren't very supportive of the autism diagnosis. I am taking my Dad who is the best available family member but if they are going to ask questions about my experience I would prefer to do this away from my Dad, like talking about bullying and upbringing, the degree of bullying I went through as a child was something I don't think he is aware of and discussing it in front of him now would just upset him to no good purpose. I have an alcoholic caregiver and I would like to be able to talk about these experiences without worry for negative consequences to this being disclosed to others as this is something everyone in my family has been schooled to never do. His answers to questions . . . I don't really know what he will say, he doesn't really understand autism beyond the boys with trainsets stereo type. I don't control what he says though and hopefully that sort of thing is not that uncommon and will be taken into account. 

Any advice on this topic would be appreciated. Just FYI I am on the waiting list currently (in the UK) I am under the right to choose thing but have not yet been given any information on what I would be able to choose from.

Thanks in advance :) 

  • in reply to Munchkin

    Good luck.

    I didn't ask my mum , she's a worrier and also I now suspect she's the genetic link to my Autism, so her view I don't think would be a NT viewpoint.  2+ months after diagnosis I've not told her, and we do speak on the phone each week

  • in reply to Cloud44

    It blows my mind how many people I know who's families are unsupportive. It is so sad. I never got to test this myself as my parents are both long gone, but I would like to think that they would have been OK with it. I'm glad that your mum's approach backfired.

  • I have very unsupportive parents who don't believe in diagnosis and refuse to update their knowledge in the many different ways autism can present. In the end my mum did the interview (only had to be there once), she was, of course, trying to tell them 'I'm totally normal and this is all ridiculous' in her own way, but it actually backfired on her. Like when asked about special interests, she told them how utterly obsessed I was with a pop group to the point I wouldn't shut up about it, in the fan club, trawled record shops looking for memorabilia. She thought she was telling them I can't be autistic because I was never interested in trains and it was something 'normal' for teenage girls. Or when asked about friendships at school she told them I can't be autistic because I had one best friend the whole time - yeah, one best friend and didn't talk to anyone else! So, I guess what I'm trying to say in this ramble is don't worry too much about their responses, the assessor knows what to look for. The family member only has to attend once so you will plenty of chances to talk about your experiences privately. Some even do telephone interviews or questionnaires, although I wouldn't recommend the questionnaire as it gives them to much time to think about their response.

  • in reply to Munchkin
    Munchkin said:
    I'm not sure I understand what you mean by presenting the neurotypical view point.

    You see your life through the lens of your neurodiversity meaning how you perceive it will vary based on your autistic traits (eg you may have demand avoidance and this leads you to see things that demand something of you as things that you HAD to avoid.

    An outsiders (probably neurotypical) view of the same situation may provide a very different perspective to yours therefore.

    There is that saying that there are 3 sides to every story, yours, theirs and the truth (which oftem lies somewhere between).

    There is also the fact that the events you dicuss will be from 2-3 decades ago so there will be elements of memory degradation for both parties so building up an accurate picture may take some piecing together of things.

  • in reply to Jalapeno

    This could be useful. Dad is late 70's I think somewhere I have my school reports, from what I remember they mostly just say that I was quiet 

  • in reply to Bored and irritable

    I'm not sure I understand what you mean by presenting the neurotypical view point. 

    I'm in my late 30's. 

    My Dad does genuinely care. He seems like the best option

  • Good evening,

    If your assessment is anything like mine, it will occur over multiple sessions. A family member will only be present during the session where their input is necessary to provide an alternative perspective. Consider this: your reality represents the 'norm,' and there is a good chance that you have felt excluded or don't fit in. However, if your assessment is successful, that perception will change. The goal is to present a neurotypical viewpoint, which is the currently accepted paradigm. It's ironic, given the other details you provided.

    I imagine the process will depend on age, but why can't you consider an alternative? Many centres have specific criteria that individuals need to meet, such as the length of time they've known each other, among others. Ultimately, involving someone who genuinely cares about you is in your best interest.

    That's just my humble opinion.

  • I had a questionnaire from the assessment unit, plus then a follow on phone interview for the same person, they wanted someone who knew me in my developmental years. My mother is nearly 80 and what I would class as a hostile witness, my father is deceased. I told them that I don’t have anyone as I’m older, they said it was fine and the assessment could be done without any parental input. I have a good memory of my childhood.

    My advice is that only you know exactly how you tried to cope in childhood and then beyond.

  • This is something that concerns me as well. I am also on the waiting list through RTC and I’m due to be assessed in July. I asked my mum to help and she said she cannot remember, my father was seriously ill a few years ago and is not mentally stable enough to handle any of it and my wife pretends everything is fine. Oh and I don’t have a trusted friend that has any idea of my history. I heard that you can opt not to have a family member present but cannot be sure. I would be happy to let you know how this goes for me in July if you like? 

  • my assessment was online - and my dad (in his 80s) was just sent a questionnaire.  Not sure how helpful his response was - although he did save my school reports which were more insightful