Published on 12, July, 2020
All my life I haven't quite fitted in, and I was hoping I was finally going to get a clear answer to what the problem is. Although the signs pointed to it being Aspergers, I didn't really care what the outcome was, as long as it was something clear and concise, so I could tell people what it is in a few words, and have clarity for my own benefit. Apparently I show some features of ASD, especially in social interaction, but "don't meet the full criteria for an ASD diagnosis". Reading through the relevant parts of DSM5, I tend to agree with that, but I find a lot more that fits when I read other stuff that's written about ASD. I also have "features of low mood and anxiety, especially social anxiety and some traits of anxious avoidant personality". Despite really struggling to get things done, I apparently don't have a deficit in executive functioning, and that problem is due to low mood. I thought low mood was something you were supposed to see your GP about if you had it for more than a couple of weeks, but I've had it for about 60 years!
I'd already pretty much switched off from the world while I was waiting for my assessment, and in the 18 months since getting the results I've switched off even more, so I now have almost no contact with anyone except my dog. How can I tell people that I've got a little bit of this, and a little bit of that, but haven't really got anything? I doubt if anyone would take me seriously. But I'm totally stuck, and can't see any future except being alone, lonely and struggling to cope, for the rest of my life. I've almost run out of energy, and hope, to keep going. Looking back, I can see that my life has been gradually falling apart for decades, and I'm now at the point where I'm in a situation I can't get out of without some serious practical help. I've never had a serious relationship, and don't think I've ever had any really close friends, but I need the sort of help and support I think only a partner or very close friends can give.
I can't go into detail, but the biggest problem I have at the moment relates to my house. If I sell, I'll lose a lot of money that I need to buy a decent home elsewhere, but if I stay I need to spend a lot of money doing it up, that will have to come from money that's effectively part of my barely adequate pension. At 62, I need a massive boost in my ability to cope with life to be able to earn much, if any, money. I totally freaked out an advisor at the CAB about 5 years ago with problem as it was then, who didn't have a clue where to start with the two lever arch files of paperwork I showed him!
At about the lowest point of my life, where I have almost no contact with other people, I think I need to fall in love for the first time, which might give me the energy I need to sort out the problems myself. Or I need a lot of hands on practical (and non judgmental) help to work out options, and carry them out, mostly involving building work and my personal finances. This really brings out what I'm sure is one of the biggest problems with me, my inability to make close connections with people, as all ideas I have for resolving things fall into a big black hole when I try to think about how I can get other people involved. I can't see that this type of support is available anywhere. So what can I do?
Johnsb, you are autistic and don’t let anyone tell you otherwise. I know, because I identify with everything you said. Also, I too thought I needed the love and support of a partner, but when I started to get some help, that actually helps, I realised that I don’t need the love and support of a partner. I needed my own love and support.
But that process didn’t really start until I got the diagnosis. Like you, I pretty much shut off from the world, while I was waiting for the diagnosis. I later found out that that is a typical autistic trait, which is related to our concept of time.
I have realised that non autistics can be very good at spotting autism, but that they don’t necessarily understand us. Also, not all people are good at their job, so not all people will be able to identify traits of autism in an autistic person. We also, don’t always fully understand nt’s, so some of their questions may not illicit a true answer from us. Sometimes you have to really think about some of the questions on those aspie quizzes. I’m not saying you invent traits to fit in, but if you think about some of the questions, you will begin to see traits. Many of us have created extremely clever (can’t think of the word I want to use) strategies to compensate for what we perceive to be our difficulties.
However, what we’re actually dealing with here, is a way of being, which is very different from the norm. Not only do we find it difficult to recognise and understand our feelings and express them, we only have a language to use that was created for and used by people who all think and see the world in a similar way. We are all effected by the environment etc as well, so how I function on one day, can be completely different on another.
I have, apparently, functioned very well up until now. According to just about everyone I speak to. But they miss the point. I was failing in a gigantic way, because I wasn’t being ‘me’ and I knew it. But the more I tried to explain this, the more tired I got with it all. Until I get to now, where I’m so exhausted that even going to the kitchen is hard work.
But I’m figuring it out.
Anyway. For now. It’s not important for you to identify yourself as anything, to anybody else. But if you feel that you are on the spectrum, chances are you are. But that can be followed up at a later date if you wish, or not, you know I’m your heart if you are, and either way we fully accept you here.
For now, you can contact your local social services and say you want two things. You want either a referral to be made on your behalf for a social care assessment or you want a referral to their wellbeing team, if they have one. You also want the contact details of an independent advocate.
The independent advocate can support you in exploring what support will best help you right now. Since the introduction of the care act, you no longer require a ‘diagnosis’ to get access to health and social care support. It is also no longer a needs lead service.
Right now, I need help with basic things. Like establishing a routine for eating, sleeping, exercise, fresh air, finances etc. Right now, I have few of those things in place. I have been assigned a wellbeing officer, from the same local authority where I used to be a social worker. I loved this team then and I love them even more now.
She was the first person to tell me that I needed to take my time to come to terms with and accept the diagnosis and also, learn more about it. She is helping me with practical steps, which to start with, is to create a menu for the week. I haven’t got very far in this pursuit so far but she reassures me, that that’s ok. I can take my time and because she supports me in that, I do less, but in effect I’m doing more, if you know what I mean. For example, by taking all this pressure off myself, in the space of three nights, I went from going to bed at gone 4 am, to gone 2 am, to last night, which was around 10 or 11 o’clock. I’m still not eating everyday, and that’s ok. Now I know it’s ok, I don’t get the severe migraines which I thought were from not eating. They are up to a point, from not eating regularly enough, but the biggest part was the stress I was putting myself under to eat twice a day. She said I could have just one day a week, to do stuff like phone calls or emails. It’s a very good idea, I still haven’t fully got there with it, I’ve got two important things I need to deal with, and haven’t yet. But I did sort out a couple of things on my ‘day’ to do them, and I can see the value of the idea so I am working towards giving it a go, whereas before, I was just avoiding ‘stuff’ completely and stressing about it. Now I’m not stressing so much about it and if I catch myself, I can say, it’s ok, I’ll deal with that on Monday. She said we will make mistakes and that that’s ok, we don’t have to get it right every time. It might not seem much to some but this help is really helping me. And I think probably the most valuable thing to come from it, is that it’s taken some pressure off me which has given me more capacity to really look at what’s going on for me, and right now, the thing that is preventing me for looking for a job etc, is the exhaustion. When I honour the exhaustion, accept it and don’t try to fight or change it, I’m able to look at and process all the reasons why it came to this. When we know what we’re dealing with we can do something about it but sometimes we need a break and some support to enable us to relax enough to see beyond our anxiety.
Contacting a disability rights group can be very helpful as well. Because under the social model of disability, regardless of the cause, you are currently considered disabled because, like me, for whatever reason, you are less and less able to perform daily functions and you have no one to confide in and no support from others to help you make some important decisions and to execute them.
Once you start to get some support of some kind, you will start to see a clearer picture which will help you tremendously and you will probably find, like me, that you need less support than you think you need. For example, I thought I needed all this help, but in fact, I was just thinking of the bigger picture, I was thinking of all of it and how the hell I was going to manage it. When really, all I need to be doing is taking care of the basics. And what I’m finding is, that actually, I’m just quite exhausted. I’ve spent 50 years trying to fit in and trying to find out what’s ‘wrong’ with me, and I just want a break and a rest, not to mention time and space to process all of this. Keep talking to us on here. We learn from each other here and this really helps. And there’s power in the pen, often when we start writing/or typing, we answer our own questions.
Very well said. Ditto. Me too.