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

Well done. Hopefully you are happy with the result and not confused or lost.

Hi all - update on how it went for those who anyone who might be going through it.  I don't have school reports or photos but I took the advice to think through lifelong examples of issues I've had, so I was able to provide examples which demonstrated issues about struggling in social situations and sensory oddities from nursery school onwards.  I got a straightforward ASD diagnosis and the report noted that I was able to provide examples across my life.  They asked my husband very little - but he provided evidence in the form of laughing out loud in recognition every time they asked me a question which struck him as laughable applicable!!  So, long story short it's possible.  Quick thought though, I noted that some assessment organisations (avaiable through Right to Choose) seemed to place more emphasis on having a witness to one's childhood than others - because of my situation I intentionally chose Clinical Partners because they seemed more chill about it.  Incidentally, I've now told my Mum about the diagnosis, and despite having expected her to say 'well that doesn't sound right'  she said, "well - that makes sense!"  - so there you go.  

Just a quick thanks to everyone who has replied - and a big good luck to everyone who is currently going through this. We'll see I guess - there are downsides to delaying something like this for 37 years  (which is about how long I've suspected!)

I have only done the initial assessment so far and was sent a form for a relative. However I have no one alive who would be able to complete it. If my father had still been alive I am not sure he would have been able to remember things that were relevant. However I remember things that I wouldn't have realized then were significant. A lot of difficulties I kept to myself. That must have been sufficient for the first stage as I am now on the waiting list.

The diagnostic manuals have a requirement that autistic traits should be discernible from early childhood. However, an assessment for autism is not a court of law requiring corroborative witness statements; your own memories of your early self should be sufficient, if no reliable older members of your family are available. I was 59 when diagnosed and had no parents living, only a rather frail 90 year old aunt, who I really did not want to bother, for obvious reasons. My wife, we met when I was about 27, filled in a questionnaire about my behaviour and difficulties and this seemed to be enough, together with my memories of bouts of selective mutism at an early age.

I had tourette diagnosis. My therapist was amazed and asked me few times if I imagined it myself and how it's possible that someone diagnosed me with tourette. Then I also had depression. Yeah very popular diagnosis and also misdiagnosis. Something us wrong? You're sad? Dang! Depression- and meds that never helped me 

Stuart333 said:

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

I’ve heard it said (by Francesca Happé IIRC) that an experienced receptionist can tell the moment you walk in and the entire examination is really about confirmation!

Hi Roy, yes I think possibly they might have said your wife wasn't suitable because you weren't under 18 when she first knew you ???  If she had known you back then, then  it's a shame they wouldn't let her do it for you and I have no idea why they wouldn't let her!   

As I said previously, they don't just ask childhood questions ,there's so much more to it and they are very thorough.

Additionally, if the person having the autistic assessment has excellent detailed childhood recall it goes a long way .  Sometimes people also have a medical history littered with 'autism bingo', where several different diagnoses were given that don't make sense when added up....ie. they add up to autism when taken into account WITH the person's history, traits, behaviours and needs. 

As with OP try not to worry, it will all go well for you , take care :)

I find it differs so much, when I filled in the ADIR forms,  I mentioned that my wife has known me for over 35 years, the reply was that she wouldn’t be suitable as it must be someone from my developmental years. I just despair, as Catwoman has said, most of us struggle to maintain any sort of friendship, I don’t have any life long friendships.

By game the system I didn't mean you had done anything. I'm sure things have changed as the diagnostic criteria have been updated a couple of times.

I meant I think I could have filled in the forms and claimed various things in the interviews that would be hard to disprove and would give whatever answer I wanted. But there didn't seem any point exaggerating or downplaying things. It is also possible I might be bad at lying and it would go wrong.

You don't need need herds of people, they just ask for 1 if possible.

I still have all my paper exam certificates in an envelope. First one is from 1983. I was always aware I needed to look after them.

Like I said I can't remember being asked to fill in any forms, nor was I asked for contact information for people from my past. I don't remember being asked anything about my developmental progress either, like I say it was all different back then, it's not about 'game[ing] the system' as you put it, its just how it was. But then autism was only just starting to become recognised in the way it is today, especially among women and girls, the whole diagnostic landscape seems to have changed massively over the last 13 years. It seems to have become less personal, less about the individual and more tick box, I'm not sure if this is a good thing or not? On the one hand it seems less erratic and the person diagnosing has more criteria, but it all sounds very confusing and sometimes almost like a "computer says no" thing.

I think there's to much emphasis placed on personal history and documentation for older people, autistic people are notorious for finding friendships and relationships difficult to maintain, so why do they expect us to have herds of people who've known us all our lives or even for a significant part of it.

My school was knocked down years ago, I doubt if there are any records available. My son went for a job where he had to show his GCSE certificates, he didn't have them and like me his school had closed some years before, he had a hell of a job tracking down any records from the school at all, let alone his. They're supposed to be kept, but the reality is that they end up lost, damaged or destroyed, especially if like us you went to school pre computerrsation and even if you did will digital records be in a format usable today? You also have to physcially travel to the town where the school was so you can trawl through council achives.

My parents say things like this and then in the next breath state my mother is autistic and I'm not.  I'm the one diagnosed and they don't believe it!  My boomer parents are unhinged for many reasons :(

My husband did mine for me as he knew me back from when I was a younger teenager so it was reliable.     They ask so many questions of the 'witness' you choose and so likely to be accurate if the person you choose is willing and wants to help you.  You have been living together all this time and the interviewer doesn't just ask childhood questions, they ask alot of minute details about what it's like living with you to get a good idea of your struggles.  

Please try not to worry, it will go fine, best of luck :)

Yes, the undiagnosed parents. My mom says that I'm exactly like her and there is nothing wrong with me. I'm just a bit weird and funny. I have problems understanding jokes sarcasm etc but I learned somehow to recognise emotions. Not always correct though. This is the biggest difference between me and my mom. 

I had a similar situation. My mum had to fill some forms in but she told me that she didn’t really have anything to say other than that I was ‘shy.’ But that was enough alongside the anecdotal evidence I had of childhood. Just from reading here it seems common that many of us have an undiagnosed autistic parent/s who don’t recognise the signs as they are similar and also they have a really outdated idea about what autism looks like. I don’t think there’s lots of preparation to do ( I feel a fraud saying that as I always prepare every conversation!) but just go with honesty and an open mind about the outcome. Wishing you luck! 

You could suggest she reads a bit more.

What my mom told me about autism is that autistic people make certain sounds all day, they are intellectually disabled and are genius at math. It's all not adding up, but when I pointed that out she said, she doesn't know how it works, but it is like that because she red it and the said "I don't know much, but I do know a bit, trust me, you are nothing even close to autism. Your doctor is wrong." 

Do my mom thinks she knows more than professionals, because she red something.

Interesting about remedial lessons. They thought I couldn't read at 7 or 8 at primary school because I ignored their books. It was because I was reading much older books at home. I was onto adult books by 10.

I would hope old paper medical records were digitised. I nearly died at 10, was given 50:50 chance and a priest came to see me just in case, due to digestive issues. Was somewhat traumatic.

Still made we walk to the ambulance when I could barely stand since I don't show pain much. 

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.