An informant should participate in your assessment?

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Best practice dictates that, where possible, an informant should participate in your assessment.

I have just received a reply from my Autism assessors far quicker than expected, and have been caught by surprise, both my the speed of the reply, and what they have asked, and how they have worded it.

They have emailed me to say:

"Informant / Primary Contact

Best practice dictates that, where possible, an informant should participate in your assessment. An informant is a person who has known you throughout your life and who would be able to answer questions about your developmental history, family background and upbringing.
Are you able to provide us with the email address and telephone number of an informant?
Yes
No"

I am finding this a very difficult decision to make. I was initially thinking that I would only consider discussing any of this whole process with any of my family only once the assessment had been completed, and only once I knew the result either way for sure..

I'm 51 years old, and at this age I am still in the fortunate position to have both my parents still alive.

However, I really don't think my father would understand the whole thing, and I don't think he'd be able to answer anything objectively. He does love me and is very biased in my own favour! He wouldn't want me to be Autistic or to have to accept that there is anything whatsoever the matter with me. I don't think that he would want to accept any of this at all. He is 87 years old, I think he's very likely to be Asperger's himself. He doesn't go in for introspection at all and has very little self awareness. I'm not sure if all this would be fair on him. He is judgemental about people with dyslexia etc, looking down on them as being ignorant or dumb etc. This is probably a generational / educational thing on his own part.

Same with my mother. I don't have a close or great relationship with her, and haven't really had since so since early childhood. I guess I too often kind of felt negatively judged and criticised by her, rather than supported. Or else I always felt she was aggressively and negatively prying, just to try to get me to talk. But her interrogation style of battering me with questions always made me resentful and clam up . She has never understood me at all. She is forever commenting on "weird people" and is very conservative, judgemental, Respectable (if you know what I mean) in ways like that. I also think that she would not want me to have some kind of scary mental illness label as she might see all of this. Our relationship is already not good, and I fear she might become very scared and wary of me if she were to get wind of any of this. It probably wouldn't be something that she could talk to her middle class golf club buddies about her son going through an Autism assessment. I'm being quite brutal, but I think what I'm saying is very largely true. Our relationship has been difficult. Partly due to my own issues, and many of those may largely be down to what I think may be my own Autism. and also partly due to her own style, and that she really never understood the first thing about me.

All this may makes her sound like a horrible person, she really isn't.  She is a warm and loving person, but I always feel the complete absence of any understanding, and the criticisms of things I cant help are what stay with me. "Loosing the plot" "being stuck in my ways" etc. Many of the things I was criticised for during my childhood and early adulthood could definitely be classed as characteristics of Autism. Things like this may well assist me in obtaining an accurate assessment, provided my mother reports back accurately. (IF she does the questionnaire in the right fame of mind)

All of this is a bit of background, trying to explain why this is a difficult decision for me to make, as to whether to tick yes or no for the informant. I mean, I would like to go with the best practice and put forward an informant. Ideally my mother would answer the questions honestly and objectively, and this would assist the assessors in making my diagnosis. She may well do so, If I was to approach her about all of this, and try to explain about Autism and what all of this means to me. I don't feel that we have ever had any remotely kind of meaningful conversation about anything much, so all of this would be a huge leap.

I guess at best there is a possibility that in the long run, she may come to support me in whatever I want to do. I really have my doubts as to whether she could accept or understand a diagnosis. I think this is realistic knowing the kind of conservative and judgemental person she has come across to me as being. At worst, and this could realistically happen, all of this could negatively affect the way my whole family treat me for ever. There would be no taking it back.

The worst case scenario is that misunderstanding,  awkwardness, and fear of their weird and Autistic weirdo son and all similar kind of bad stuff could just increase massively. On the other hand, a miracle may happen, and she may understand all of this in the most progressive, non judgemental, and enlightened way possible, and all this will only bring us closer in the long run, and she will try to support me. In some ways she can be 'right on', so just maybe if she spoke to the right people she may go some way towards any of the above.

In a very loosely related way my cousin's son has recently come out as Trans. No one in my family seems to have batted an eyelid. Everyone has supported him.  So maybe my family really aren't as hyper conservative as I'm painting them out to be. But I really don't know how to make this decision about the informant.

It would be easier and less complicated and less stressful to select "No informant". But then my assessment would not be as good as it possibly could be. The ideal and best possible outcome is that it's an opportunity to improve my relationship with my mother and to bring us closer.

But it's also risks making everything worse than it already is.

Congrats on hearing back so quickly!

Can you email them back and explain in brief about your parents, rather than just saying yes or no? It's likely a form letter / standard response that you received, perhaps the same one given to all adults even if they're younger / likely to have younger parents.

I was diagnosed around your age. My dad is deceased and my mother is also in her 80s. She sounds a bit like your mother and not a very reliable contact due to personality and deteriorating memory. She's never used a computer and doesn't have an email address. I ended up using my daughter as the informant but she didn't have to go to my assessment or participate verbally. She was sent some personality inventory questionnaires about me via email and she had to send them back to a third party assessment place rather than my doctor, directly. (My doctor got the results via the third party). My daughter was in her early 20s at the time.

Assuming you don't have a child but considering you are 51, it's reasonable to say your parents are too old to participate. Many people our age don't have parents or contact people who are older, because they've died or because those relationships have broken down. I've seen people here on WP with the same concern, and they were diagnosed in UK without an informant. I would suggest being honest with the assessment people and asking what to do in your situation - whether to involve your parents given the circumstance, or not.

I was able to provide DH information by using school reports, old family movies, photos of me at different stages, my mother's baby book about me, and even some work-related evaluations from when I was a lot younger.

Congrats again on taking this first step, and good luck!

My mother was my informant.
She didn't attend the assessment physically, but wrote notes on my behaviour as a child and adult and other observations.
My mother sounds very much like your mother in attitude, minus the warm and loving part, but she still did it, surprises me now.
What I'm saying is maybe they don't have to go with you to the assessment.
Personally, I would have hated someone going with me.

I’ve heard of people using friends, rather than parents.

My mom thought she was answering a questionnaire for my security clearance.  I never disavowed her of that belief.

I was diagnosed a few years ago. My mother was already dead and I was very reluctant to invite my father to do it. Initially at the screening appointment I gave my partner of 12 years as a contact, but when I got to the next part of the assessment they wanted a parent or someone who knew me as a child. My father was in his 80s at the time, fairly likely to be Aspie, though never identified as such. In the end it seemed that this was my one chance at someone taking me seriously about the diagnostic process and all I went through to get there meant to me that I wanted to be sure I had given everything I could to the process, so I agreed to my father being the contact. As he lived a few hundred miles away, he did not have to attend, the psychologist phoned him instead. I spoke to my dad beforehand to tell him what it was about and though he agreed to do it I was very dubious about what he would say. He had little involvement in my day to day care as a child and said on the phone several times that he thought I was very ‘normal’ really.

I explained all this to the psychologist in case it made a difference. I also emailed my aunt to ask her if she had any memories and she came up with a few things that seemed relevant which I forwarded to the psychologist.

As it was whatever he said was enough to not dissuade the psychologist from what he had already worked out from my own part of the assessment. In my case I think perhaps that it was more about not showing up something I had not mentioned which might cast all of my own behaviours and evidence into doubt and perhaps give an alternative explanation for my presentation.

My father passed away this summer, so if I hadn’t asked him then, I would never have had the chance again. I’m glad that I made the choice I did.

Of course you must decide what is right for yourself, but it might not be as bad as you think.

I was asked to include somebody who knew me well, and nominated my then wife for the role, though I had some misgivings because she had a few axes to grind about me. I felt very tempted to object to some of the things she said about me, which I though were rather jaundiced and uncharitably-expressed, but I figured the psychologist was probably used to dealing with people and would see through any hype - at least not swallow every word as the objective truth. And I was after a diagnosis, not a character reference. So I swallowed my pride and told myself that whatever I thought of it, it was her view. Whatever the wisdom of that, I wasn't unhappy with the quality of the result of the diagnosis. My parents were both dead, and my sister was too far away and didn't know much about who I was as an adult, so there wasn't much corroboration of what I'd been like as a child, but as far as I remember there weren't many questions about that.

DSM also says that if one's history is not available through other witnesses, this should not stop/prevent the diagnosing professional from giving a diagnosis .

Do you have any siblings? a partner? or a friend who has known you since childhood? It doesn't need to be a parent.
Good luck with your assessments.

The clinicians involved in my identification used ICD10.

At the onset and in light of the fact that I was 60, they said that it was not essential to have a family informant just desirable.

I was told (late 40s) I would need informants. On my second and last day of assessment the evaluator hadn't asked for one - I inquired and he said I didn't need one --- I guess my current presentation and reams of childhood observations were sufficient.

Personal share: I had lined up my (ASD) mom, which really would have been a fail b/c everything I did was "normal" to her before we knew ASD was "different". My (NT) dad couldn't tell: he travelled a lot and I was quiet and obedient. I'd try to share my concerns and he'd say "everybody feels that way...". I've just started sharing more of my internal experience with him so he can see it's not what "everybody" feels, thinks etc.

Definitely share your concerns with staff. Wishing you well for your assessment.

Thank you everyone for the replies and good wishes. I will get back to the assessors today and briefly mention my concerns.

They want a quick response, and so there is nothing to be gained by taking any longer trying to decide what to do.

Although it is useful to have someone who knew you as a child, it is not essential.
I had neither anyone who knew me as a child or who I wanted there. It was not a problem.
Ultimately it is you being assessed and sometimes having an informant can hinder you being open and honest.

You may even be better taking a good friend, who can be supportive without being involved.

For my DX they got round that by having 3 sessions, and my wife was only there at the second one. As it happened, I had nothing worth saying that I'd have wanted to keep secret from my wife, but that's just me. If I remember right, everything she told them was run past me first, because I was there when she said it and because she showed me what she'd written, but it wasn't necessary to contradict her or to ask her to alter her story. But again, that's just me.