Finally had my assessment yesterday

I pretty much do the same. Some loud music on to drown out everything else and just lay on the bed and focus on that 

Aye! And that's the main thing about all this I guess. I no longer feel like the weird outcast, and know I do fit in somewhere =)

My mother had died before I was assessed. My father said he saw nothing that suggested 'autism'. My  sister who is 3 years younger than me provided a letter . My 'daughter' * also provided info as  to how I am.  There were 2 hour long assessments with my 'daughter' * with me, and an ADOS  without my 'daughter'* present . It was decided that I fitted the criteria for Asperger's. That although my sister couldn't provide personal info re my very early years - what she did provide pointed to those symptoms also being present at a younger age. The ADOS had me rated as social interaction= Asperger's level & social communication = classical autism level. If 1 or both were at Asperger's level then you got the Asperger's diagnosis.

* not blood related but we have known each other since 1982. She is my late wife's youngest child. We regard each other  as father and daughter. Her biological father was off the scene before she went to school.

That sounds like a very stressful experience- I’m so sorry. If it’s any comfort I felt a bit like this after my assessment- but I did get the diagnosis. I can relate to your experience with your parents too - I hope you can find healing. 
At this point I would say to you: wait until you get the results of the assessment before even considering what to do next. Give yourself a time of rest and recovery to recover your sense of peace - do the things right now that will bring you as much comfort as possible - and ‘park’ the rumination and decision making about this who assessment process. Have a holiday from it all and give yourself time to breathe. Your well being is what matters most. X 

Do you have any personal memories of your behaviours/thought processes as a child? If you do not have someone who would be able to tell what you were like as a child then your own memories should be valid. 

There are many ways for autism to present itself that are not the stereotypical signs that people look out for. I was overlooked as a child because my sibling was presenting with more stereotypical/challenging behaviours, and I was not like her. She was diagnosed at uni and I was diagnosed just a week ago. 

When I put my suspicions to my mum she did not think I had any autistic behaviours growing up. On reflection, we came up with many situations where I displayed qualifying characteristics. By the time the assessor spoke to my mum about my childhood (they had a conversation lasting over an hour), my mum was convinced I would be diagnosed as autistic.

Some examples are:

literal thinking - my mum used to sing I'm Gonna Wash That Man Right Outtta My Hair (from South Pacific) when she was washing my hair. For ages I assumed that one had to wash one's hair to get rid of the little men living in it.

Overstimulation - I had lots of extra curricular activities but when I started school I would often refuse to go to my activities or become stroppy. Eventually my mum realised she had to cut out all activities apart from school. Also I would hide under the bed at friend's houses because playdates after school were too much.

Unusual play structures - I did have dolls, but I didn't play with them as such. Instead I spent ages coming up with elaborate backstories and personalities for them, making lists of their likes and dislikes.

Obsessive behaviours - I read constantly, even while eating or walking out to the car for school. I also created complex imaginary worlds, inventing languages and drawing maps and sigils, making lists of common names from the different countries, etc.

Fingers crossed! When I’m stressed I play a song and pace my kitchen for an hour or two. I do it everyday anyway just for relax, for years or better say, decades already. I play one or two songs over and over and over again. Only on earphones, others complained they gonna vomit from this repetitive music. Maybe similar session also helps you relax? 
incredible with how many people here I have similarities and I spent years thinking that I’m the only alien in this world 

They haven't said anything yet about a report. They're trying to get hold of my friend and uncle to ask them more questions, and said they'll phone me sometime today 

Aurielle said:

I'll have to have a go at getting hold of my old GP then and see what they can find.

You should request them from your current GP, who will have all of your records, dating back all the way. Records are always transferred when switching between practices (even if they're hundreds of miles apart). 

I think they did read the information but they wanted to confirm it with you personally. They way maybe they also asses how true the information you provided is. I think best for you would be to refocus on something else. Easier said than do, but you can’t bring the time back, what has been said it’s in the past. How long you need to wait for the report?

An autism assessment is not a court of law, it should not require legal levels of proof. Like any medical assessment, what you say about your 'symptoms' should be believed without the need for corroboration. If you have relevant memories from your childhood, these ought to be sufficient, After all people in their later years whose parents are deceased get autism diagnoses.

I think the most important thing is validity for US! For others it doesn’t matter anyway, not for all, but for many. My family can name all my traits that they find weird, these are typical autistic traits, but when I mention autism they laugh me off. So I just decided to not discuss this topic with them, I leave it there and I find it very helpful discussing my issues here in this community. I shared the information with my only friend I have. I was positively surprised by her reaction although she herself admitted she has no idea about autism. She is not autistic but I believe she is also neurodivergent. I suspect she may have Borderline but I don’t say anything as it’s very sensitive matter and it’s up to her, I know she has a therapist and the specialist helps her. 

That could be a good idea.

I think I should be getting a phone call today, I'll ask what they needed and maybe ask if I may be able to come back and discuss things more with better preparation. 

Fiona said:

I don't think you are being told you don't have autism, just that they don't have enough evidence to apply the diagnosis. So, could you find out what evidence they need?

Fiona has hit the nail on the head - could you ask them what evidence they need? It is OK to ask them, This kind of chasing up is hard for us, but do you have someone who can advocate for you? I don't mean someone who can provide evidence, but someone who can speak up for you and ask for this information when our tongues get tied (as they do).

Can you go back to them with the list you created? When I had my assessment in Feb this year, aged 51, I told them there was nobody from school I keep in contact with, and my family couldn't be approached for various reasons, so I got my longest-standing friend of 25 years to speak with them. I told them about my school experiences that I could remember.The only thing I had were school reports from secondary school, but they didn't use them. Might part of the issue with your parents, have been that one/both of them was autistic too? (this would also be evidence.) When I was going through my assessments, it occurred to me that my mum is probably autistic and a lot of her violent behaviour to me as a child was due to her responses to me. I told the assessor this.

I don't think you are being told you don't have autism, just that they don't have enough evidence to apply the diagnosis. So, could you find out what evidence they need? Or is the issue that you can't remember enough of your childhood to give them the evidence they need? It is common, unfortunately, for late-diagnosed autists to have experienced bullying, abuse and trauma responses. They just want to establish that that autistic behaviour of yours was there before the trauma - which can be hard to unpack without a good counsellor. We probably all know people who have been mis-diagnosed with other things, so their caution could be viewed as a positive.

Or, can you seek assessment by another means? From what I know of the assessment process, they interview you and the person who knows you best/when you were a child, do the practical test, write a report, take it to their team meeting and present the evidence. If there isn't enough evidence the team decide what advice to give. My experience was it was the decision of 3 people - the 1 that did the background gathering, the one that did the practical test, and their manager. All 3 were listed on the report.

You know best. Maybe you just need to find an assessor who can 'speak your language'. I hope you manage to get this resolved.

Yeah, that's true. I guess I just hoped it at least gives more validity to be able to say that I've been assessed and diagnosed for it

Yeah, the only person is my uncle who historically doesn't have a good relationship with my dad (his brother) either, and so could only trust reaching out to him. Am awaiting them trying to contact him for more info, as i say. But he didn't get to see me much as a kid due to issues with my dad so unsure how helpful he may be. But we'll see.

Yeah, will have to hold on to that fact I think! 

Thankyou!

You're welcome - best of luck!

Hmm.

I'll have to have a go at getting hold of my old GP then and see what they can find.

Thanks!

Aurielle said:

My doctors notes I've been through on the NHS app, and a lot of it is blank or gives no details. Like one is that I failed a hearing test, but no context or anything else given.

The NHS app is seemingly a mixed bag, at the moment, in terms of how much info any given one of us can see. Until recently, I could only see pretty limited information. But my practice then upgraded that (as part of a phased national rollout, as I understood it) to provide much more detail. So, even though you have some degree of access via the app, you may still only be able to see a limited amount of recent, electronic data.

However, depending on how old you are, there could also still be a potential treasure trove of much older, paper-based records, which won't ever be available via the app, that you haven't seen yet. These are the rules about the app:

"Patients with online accounts, such as through the NHS App, should be able to read new entries, including free text, in their health record. This applies to future (prospective) record entries and not historic data."

This may or may not be an option. I'm clutching at straws here... When I was diagnosed earlier this year, I couldn't use my parents because I am 50 something and they are long gone! My wife had spoken to my mum lots when we first got together and could remember some observations. They also took on trust many of my own observations about my own childhood. You have already said in your first post some of your memories about how they got mad at you and why - these should be good evidence. Is there anyone that you have lost touch with that could help?

But again, I can only repeat myself - they haven't said that you are not. They just do not have enough information. They are two different things.

Sounds a whole lot like me as a kid, yeah! Haha.

He wasn't dismissive or anything like that. I think he probably did he best with what info I did manage to provide but.. 

Given how much I struggled with discussion yesterday I feel like what I'd written up and sent to them prior had a lot more to go on and could have helped. And I worry a bit it hadn't been read, especially as they had to ask me again for people's phone numbers which should have been on my file...

I hope I'll be able to ask for a second opinion and maybe I can prepare myself better next time.