Late assessment - ADIR without an informant who knew me as a child

I have found all of my school reports in my mothers attic, they occasionally mention I was quiet but nothing stands out. My grades were normal yet in primary school I was put into remedial lessons, no mention was made of this. I know my parents were never made aware of this. I told my mother I think I may be autistic about 4 years ago, her answer was that autistic people don’t talk and stare at walls all day. 

My early medical records were hand written. These would show I was hospitalised when young. I shutdown so deeply that I stopped drinking, this was after a trip to the dentist. I was in hospital for quite a while. I don’t know if these records still exist.

Very much same here. But my grades were pretty far from good. Only certain subjects and especially Russian I had the highest grades and certificate from national Olympic competition when I was 18. I was amazed to see, that I got quite good grades in PE although I was very clumsy but I was always present and trying my best.

Don't worry. They can account for this. I was shy.

If you are smart you learn that you can fit in and avoid attention by getting good grades. I always had good grades, no one said anything. The reports just said I was ok, if a little reserved, and that I burnt the candle at both ends. I was only doing it to not disappoint other people, I didn't really care about praise, I didn't do anything for myself till 21/22.

My school reports say absolutely nothing about my social development, or other problems. Just grades in school subjects and that’s it. In my country it was unusual to write anything else especially if the only issue was that child was too shy and compliant. Bullies were never taken seriously. I’m wondering if these reports would help anything. My mom is deliberately withholding my medical records from my early childhood and also some of pictures i drew so I have no evidence and of course she does not support me in getting diagnosis, because I was too creative and intelligent, and autistic children are those, who only rock whole day and make certain sounds. Yes it’s true but not only. 

The forms were mostly the screening forms, like AQ 50, plus additional ones for trauma, childhood issues, background info, authorisation to contact people, etc.

There was one big one which ended up at 30 pages, which was about half questions and half answers, which covered all the developmental stuff. Taking ages, writing lots, finding it hard, may all be indicators on their own.

Like I said elsewhere,  I did not pick the easiest route.

It may be possible to game the system if you are smart, but they look for inconsistencies, and saying yes to everything would be suspicious, besides how does it really help.

I just decided to be honest. The result is what is. Perhaps it is obvious, I can't tell from the inside looking out.

I have a feeling they decided in the first 30 minutes and the rest has just been confirming what they thought.

I used my dad who is in 80s to be honest his memory wasn;t that great and he did an awful lot of working away from home, so my mum (who I'm thinking is possibly autistic - but not diagnosed) mainly brought my sister and I up, during the week.  Everything for my dad is "no problem".  The one good thing is my dad had kept most of my school reports mainly secondary school (early 1980s) - and they were very helpful.

So understand where you are coming from - all the best too

This must be a huge issue for lots of people, my Mum's still alive, but she's never had a great memory and I wonder if she's ASC too. Why would anyone keep school reports from 40 or 50 years ago, who has the space?

I don't have anyone else who's known me for any length of time, I guess I was lucky I was never asked for any of this stuff, it all seems to have changed a lot in the last 13 years since I was diagnosed, I don't remember being asked to fill in any forms or anything, just a few appointment with a psychologist.

Like so much else around ASC, it all feels as though it's set up for the young and us latelings are 'out of context problems' the systems don't know how to cope with

Your answer was very helpful. I can travel, I’m living in Germany and there is a clinic in my town so this is not an issue. I don’t want to get misdiagnosed with autism in case if I don’t have it. So I would not trust any online or on phone assessment. 

I know online there are various people who say to create an enormous folder of evidence. There are also some who then say a lot of it was not looked at.

The assessment is looking for evidence to tick boxes. Once you have enough evidence to tick a box having 10 times as much does not change anything.

Thinking about it hard beforehand helps. I have filled out 11 questionnaires. One took me a couple of weeks, others just 30 mins. I have I also been thinking about my issues for a few months and had written lots down as I was looking for patterns. So some was fresh in mind. I also have a good memory for anything unusual.

You can look up the NICE guidelines and the DSM5 criteria so you have an idea. 

Being prepared so you don't just say "Don't know" helps. But you don't have to answer every question or identify with every issue.

I am not sure if I should say this, but it might help to stop people worrying:

Note that it not just what you say, it is how you say it, the words you use, mannerisms, body language, topics, the things you remember, phrasing, what worries you, what causes you stress, what items you keep circling back to, etc. It is the whole picture. 

You want to go into detail and make sure they understand, but it is not therapy, they don't need the whole story. I keep worrying I didn't say enough, but they have told me they will ask if they need more.

Two psychologists and some others have said there are good grounds to suspect, but you never know till the final result. I have found they give little away and my probing has resulted in no clues as to what the verdict will be.

Doing it face to face rather than over the phone is better as they can see more, but if may not be possible if you can't travel.

Hi and welcome to the community.

In addition to sharing my own memories and extracts from some of my school reports with my assessors, something that helped me enormously in preparing for that aspect of my assessment (covering my early developmental period and childhood) was getting a copy of my full medical records from my GP - including photocopies of my archived paper records.

This helped in two ways. Firstly, it prompted me to remember various relevant things that I'd forgotten (my memory is generally very poor, especially going so far back). Secondly, it provided solid evidence from various stages of my childhood. For example, there were notes about my sensory sensitivities having proved problematic for doctors when they were trying to carry out physical examinations.

Given the timing of your assessment, it might be a little late to request copies of your full records - not least because they might first need to retrieve them from off-site archive storage (as they did with mine).

Rather than waiting for them to be copied, you could perhaps instead ask to inspect them. Based on the other option offered to me, this would likely need to take place at the GP practice, and with someone from their team supervising you throughout.

I find your answer very helpful. I have many pictures of myself from my childhood and teens, I have copies of the works that were my interests at that time, the trams, the dolls as a teen, I’m also a living example of fluent Russian speaker. That was also my very deep interest. The problem is that I don’t have any reports saying, how I was socially. I have school certificates with only my grades, which show some sort of spikey skill sets but it does not say much about me how I was there. It was only said that I’m too quiet and too shy but nothing in written. My mom could give a lot of useful information about me in my childhood- meltdowns, dissociations, isolation, difficulties with finding friends, not reacting to my name, weird obsessive interests etc. but she wouldn’t support me in getting the diagnosis because she believes it was just me being a bit weird or childish or too dramatic (meltdowns). She does not accept a possibility of me being autistic, so I can’t use her as an informant. All I have is a request to speak to a psychologist through a school form and some diplomas from sommer camps stating that I was quiet, shy and whiny. I don’t think this would help. In addition I’m living in other country than where I grew up. So there I would have to additionally pay for translation. I lack all medical information till I was 7. I know they were concerned about my irregular development, including walking and talking, but when I finally hit the milestones and exceeded in speech, they assumed everything is fine.

I have just been through this, I am also 56 and my parents are close to 80 and actually still alive.

I have no school reports, almost no pictures of me as a kid, no videos etc as it is pre internet and pre smart phone and developing photos was expensive. 

It has been done based on my memories. It has been hard. I was quite isolated so find it hard to give examples or be sure what I did, behaved like, what friends I had. It is hard to remember. I just did the best I could. I remember being a teenager and my twenties and I contrasted that with more recent stuff.

Since ASD is a developmental condition they want to see if you had any traits when young, so your current issues are not down to trauma, drugs, or do some other mental health issue. But Aspergers doesn't always show much till you get into the adult world with all the social, relationship and work pressures. They know this of course.

They are going to talk to my parents, but the forms they filled in (I think there are two) do not say much. They also can't remember much. I was going to keep them out of it, but they wanted to help. I don't think they will add much.

It is possible to proceed without an informant but it makes it more tricky. I didn't want to end up with an inconclusive result.

If you have many obvious traits and can point to various challenges in your life they can judge based on this. 

If was worried about demonstrating impairment, as I can function in a job, but the definition is more broad and covers lifestyle issues. I learn the conclusion in 12 days.

Hi, I’ve got my assessment this week, I’m 57 and only have my mother left  who knew me as a child, she is nearly 80 and what I would class  as a hostile witness. My wife is going to accompany me, she has known me since I was about 20, I do get comments that I used to like certain things, she thinks I’ve somehow changed.

My assessment is an NHS one, I’ve informed them that I don’t have an informant, the reply was that it will be conducted using ADOS and a general discussion about my childhood. To be honest it feels like going to court and being cross examined. If you have any school reports, they can be used as evidence. Good luck and I hope you get the outcome you hope for.