Hi Everyone!

I'm new here, so I thought I'd say hello and a bit about myself.

I'm 46 and was diagnosed in August. That in itself was a journey and a very strange experience (and a story you've probably read here many times). Growing up, I was always "different", rather read a book to escape than be playing with siblings, typical autism traits such as collecting things, counting, etc. You've been through it or heard it all before! I also used to fall asleep easily.

However, just to be different, I have a rather sadder tale to tell, and to be brutally honest, I only started to talk to someone about this when I was 40. Up until then, I was masking (badly it seems in hindsight!)

I always got the feeling that my parents struggled with me - in particular my father. When I was 8, I was taken to a psychiatrist, which I recall vividly as being a "bad" experience - although it wasn't and he was pleasant enough, however my parents were present at all times. I only had a few visits and never really understood what was going on. I recall one test being to write down my address, then tell him what was wrong with the way it was written (some letters were bigger than others). Little did they know then that freedom of information would come about!

I recall trying to explain to my parents several times my sensory issues, but as a child it is hard to explain, and I was laughed at. Other traits I was beaten or threatened if they continued, and after the psychiatrists visit he was used as a threat - "You don't want to have to go back to that man do you?" kind of thing.

So, I stopped talking about the flashing lights, the noises, etc and tried to be normal. When I fell asleep I was called lazy - some mornings had cold water thrown on my bed to get me out of it, and tried to carry on like everyone else. I don't recall ever having a meltdown, but of course we didn't know about shutdowns then.

As time has gone on, relationships with my parents have faded to nothing, but I did manage to keep in touch with my brothers and sisters. At a distance. I went on to have several failed relationships and in some cases children in those relationships. I am in touch with my kids which is a blessing because as a parent I am terrible.

One of my kids was diagnosed with Aspergers a few years ago, which got myself and his mother talking about me, and she suggested I get tested - I mentioned this to my mother & sister as we were still vaguely in touch at the time (although in different countries) and they went mad saying she was disgusting for suggesting such a thing, so I put it out of my mind for a while.

During the time up to around 5yrs ago, I had held down jobs - highly paid professional careers, yet still managed to lose two homes and be evicted several times (we recently counted 6 but I think it's more), have zero savings and nothing to show for it. Now we know why, but at the time I was always "why the hell am I like this?".

When I was 40 (around 6yrs ago), I met my current partner. She has been amazing. The first time I stayed at her house, I offered to walk to the local shop - it's a straight road in a small village with the shop on the corner. That was fine - I got to the shop no problem! An hour later she rang to find out where I was, and I had to describe local buildings so she could drive to pick me up - I left the shop and went down the wrong road and got totally lost (I was in the next village!). So, virtually from the start she knew I was on the spectrum - just not much more else.

Skip forward 6yrs, and after the usual relationship issues I have always had - the partner feeling used, neglected, unwanted, etc, things came to a head. I don't know how to explain what happened, but it was like a total blackout. She went to a mates house for the night, so I went to bed. So I thought. She got home next morning to a load of suicide notes made out to my kids. In a panic, she called the police. 

So, the fallout from that led to more open discussions about shutdowns, sensory pains, etc and she started reading more about the condition, and encouraging me to read more (a lot on this site), and so we decided to make an appointment with the Dr - she agreed to come with me. She has barely left my side since.

I was under the impression it would take years to get an appointment - my first one was due on the same day that a TV documentary went out about the missed generations of autistic adults - the Drs cancelled that appointment, and that night we sat down and watched it - I was amazed at how much I related to everyone, so we did the Cambridge test. She did it as me and scored 43. I did it as me and scored 48. So we made another appointment with the Dr for the following week.

I had nobody from childhood there, but mentioned the psychiatrist, so he dug out my paper notes and started to read them out loud. He was visibly shocked (even to me who doesn't pick up expressions!) and asked if I wanted him to continue. Basically, my parents had painted a picture of me to their Dr to get me a psychiatrist. This had stories such as beating up a disabled child to steal money at school! This never happened! I was so upset after that I even contacted my primary school teacher at the time - she's in her 80's now, and she said all she remembered was a quiet child that never gave her a days trouble - then said she had always worried about what happened to me because she'd met my parents and found them to be abusive. This tallied up with the psychiatrists findings that there was nothing wrong with me other than an abusive and over bearing father.

The upshot was that I got an appointment with a psychiatrist very quickly. We thought everything was going to be fine! How wrong was that? I was diagnosed very quickly with severe autism. No explanations as to the tests I had done, or what getting three '9s' meant - and discharged from her service. After 6 weeks, I contacted my Drs surgery and was told I hadn't been to the appointment. I said I had and was waiting for us both to get the results by post. Eventually they arrived, and the surgery asked me to go in to discuss the results.

Unfortunately, my usual Dr was away so there was a locum. It's a lot for me to travel, and I have to mentally prepare to get there, but I left feeling sick and depressed. He came across as I was wasting his time. He asked if I was depressed and I said yes - I didn't handle the diagnosis well and felt like I needed support. His reply was "I don't know what you expect me to do? Have you tried the internet?" I was made to feel like I shouldn't have been there, and the appointment lasted 5 minutes. My regular Dr has been great, but he doesn't seem to know what to do either!.

So - onto PIP. My partner filled out a very detailed form - it took us the whole month to fill it in, and she was reading up on what I was trying to explain, sending me videos asking "is it like this?", reading pages and pages online, trying to get an insight into how this affects me, and she has been amazed at the effects it has that I kept hidden. We thought she had done a great job. 

27th December, we went to the F2F assessment. I haven't slept since, and she is barely sleeping because she is so upset. She was there with me to communicate answers because I could barely speak, yet the assessor kept asking her to stop talking because it was my assessment not hers. Every time she tried to help, the assessor was getting more and more stern with her, and saying "he needs to answer me, not you - I am asking him the questions".

She asked about any habits or needs to do things - I told her I code software. She said twice she couldn't put that down because she doesn't know what code is. So we explained it was how she is using a computer, etc. She asked how long I do it, I said roughly 12hrs a day. Later on, I made a comment about how hard waking up can be - it can take 4hrs to focus and fully wake up - and in that time I can't co-ordinate to tie shoe laces. She looked at me and said "yet you can co-ordinate your fingers 12hrs a day on a computer". When it came to finances she said "that's very strange - in all of my dealings with autism, "they" are very good at paying bills". We felt like she was making out we were lying all the way through the assessment. She didn't ask about sensory issues, shutdowns, etc and when we tried to explain we were shut down. She also asked questions I just didn't understand. The first one was "how does this affect you?" about autism in general. I asked what she meant, or in what circumstances and she said "you just need to answer the question". At that point I asked my partner to help me, and she said "no - I am asking you. This is your assessment". She must have seen I was getting upset and kept saying I didn't understand the question so she let my partner speak - but she said the same thing - what do you mean by the question? So that question seemed to have been skipped!

She asked briefly about support I get - so we said I have been trying but there appears to be nothing - I guess that goes against us too. We touched on work, so I told her my problems with keeping jobs, timekeeping, staying coherent for 8hrs, etc and she said "oh you are trying for ESA too then" in a disproving voice.

So anyway - sorry for the rant - I kept it as brief as possible and left a lot out! But that's me....