One of the things that has emerged out of this whole chaotic diagnostic fiasco is something rather lovely. It turns out that many of the people I know are really really good people and really want to help.
Interestingly, I’m already finding this blog post much much more difficult to write than the last one. The last one was factual information and sorting out logical sequences. This one involves feelings, and I’m very much less good at coming up with words about feelings. I discovered recently that that’s called alexithymia and it’s almost certainly one of my autistic traits. Usually, if I need to describe how I really feel about something, it will take me a day or so to come up with the right word!
Anyway, there are lots of good feelings about the way that people have been reacting to all this stuff, and the way that so many of them want to help. I sometimes read the posts of others and feel that I’m living this autistic experience rather backwards – I read tales of people self-diagnosing or receiving formal diagnoses of autism and their families and friends being disbelieving and talking about “labels” and so on. I still have no formal “label”, but I am yet to encounter anyone who has told me that I’m talking a load of rubbish about being autistic (maybe there are some who think so, who knows, but if there are, then they are doing a great job of keeping their doubts to themselves, which is much appreciated at the moment since I have quite enough to deal with).
Maybe I just got lucky and know really nice people, but loads of them are suggesting things and trying to come up with plans to make my life easier. I have been sent a lovely colour changing lamp diffuser, been given suggestions for meditation, relaxation, and so on, received many messages of support and offers of things that I might like on facebook, even a picture of someone’s dog to cheer me up, these from people I know well, people I know a bit, and some people I’ve only just met. Some are on my own wall, some are on some of the groups and pages I’ve recently joined, and some on the facebook page for this blog.
Some of my religious friends have told me they are praying for me, and said that they hope I don’t mind because they know that I’m not religious. Of course I don’t mind. Whether or not I believe in any higher power, the fact is that these people are devoting some of their time and their thoughts to hoping that my life might improve. That is generosity that mustn’t go unappreciated.
Other friends are doing similar things in their own way too, looking up articles and books and things that I might like, pointing me to websites and so on, talking to people they know who have contacts in the area of autism and mental health, trying to find ways in which they might help.
It’s all slightly overwhelming, but in a good way, I think (remember I’m really not good at this feelings business)!
And yesterday, after the second assessment became an aborted mission, several people started to suggest that they could help me fund a private autism assessment by sending me money or organizing a crowdfunding campaign.
*more feelings I don’t really have the words for but if I wait three days to write this blog post then history will have moved on and goodness knows what will be in my head by then*
My immediate answer to all – apart from Wow! People! which is definitely a reaction but possibly not a particularly informative one, is “Please can I keep that offer on ice for a time that might be weeks or months?”
I *think* the process now is that we are going to keep the NHS referral to the hospital open, but also see whether there is any use in getting the triage service to investigate the other centres. There is no doubt that the best thing would be to get an NHS diagnosis because that offers the most support and is the most recognized as far as possible benefits and things is concerned.
However. If it becomes apparent that the NHS really is hopeless then the option of a private diagnosis would possibly do several things.
The first is that it would give me a diagnosis to start my own process of acceptance and to help me move on properly with life while I was still waiting for the NHS to catch up. I’ve come across several people on groups who have had private diagnoses which have been massively helpful to them and have then gone on to get the formal NHS diagnosis at a later date. I’ve even heard of cases where the private diagnostic report has been sent to the GP and it has been accepted for NHS purposes, although this is, apparently, variable and unpredictable. We still have a lot of research to do on all this.
The second is that if I did get a private diagnosis we could then take it back to the NHS and say “Hey guys, you didn’t manage to give us this, but this person HAS made this diagnosis and says that I am autistic and since we’ve gone to all this trouble and expense you can damn well get your act together and finally give me an NHS diagnosis – OK?”, effectively using a private diagnosis as a stick with which to beat the NHS diagnostic services (not literally, though, I’m not going to try bashing psychiatrists round the head with a rolled up bit of paper because I don’t want to end up in a padded cell)!
The third is that if the NHS does just totally fail me and we reach the end of the line with them, then a private diagnosis would quite possibly provide enough proof for me to get some support that I would not get from a self-diagnosis, and it would certainly go a long long way to helping me to accept everything and start to rebuild my life, and could possibly improve my quality of life much more quickly than remaining self-diagnosed.
So the practical answer at this stage is “Maybe, and we’re still thinking what to do next” if that makes sense, and I hope it does. Thank goodness for blog posts because I’d be completely incapable of conveying this information in any sort of conversation at the moment – I’ve even taken to typing out e-mails in a document first before putting them onto the actual e-mail because somehow what I’m doing now is just translating my thoughts into words, but as soon as it’s an actual e-mail or a message it becomes communication and therefore much more difficult.
I never said my brain was easy to fathom, which is, of course, a large part of the problem!
The other thing I want to mention briefly here is that I’ve also had a few communications from parents of autistic children who have said they’d really value my input on how they can help their children. Again, I don’t really know the words for it, but I guess “Awesome” or “Doubleplusgood” or something similar. I’ve hung out in groups of autistic adults long enough to discover that I’m not alone in hoping that one of the things I will be able to do as soon as my head is together enough, is use my experiences to help others work out what would be most helpful. Although I’m a brand new autistic as far as actually knowing about it is concerned, I have 45 years of lived experience behind me and if I can use that to be helpful then I absolutely will. I’m absolutely touched beyond belief that parents would value my input in this way and I’ll absolutely do the best I can to help, limited only at the moment by my own head being somewhat all over the place. I’m on to it as soon as I can be though.
It has even crossed my mind that I might eventually end up in some form of autism education. There’s no doubt that autism has, already, become a massive interest of mine (I can’t understand how it wouldn’t, given what I now know), and maybe I can use some of my experience and learning ability to be helpful at some point. Perhaps there is some place in the world that can use a qualified schoolteacher with personal experience of violent meltdowns and non-verbal episodes who knows that wearing certain clothes is actually distressing and painful? Who knows? That’s almost certainly something for the future because at the moment I’m still struggling to do even familiar things in places I’ve been before, but it shows the direction my mind is working in and gives me hope that I might possibly be useful in the future.
And, when you put all this stuff together, when you add it up, it is actually rather powerful. When I took up mindfulness a few years ago several people said they’d found that mindfulness wasn’t a cure all etc etc. I already knew that. I’ve been through 20 years of various therapies and medications and am yet to find the magic thing that sorts life – and I never will, because it doesn’t exist. But, what I said to several people about mindfulness was this: I’m aware that it won’t solve things, it might not even be 10% of the solution to my problems, but what is true is this – mindfulness costs me very little, an 8 week course and a couple of sessions with a teacher, a book, a bit of time, a bit of effort, but not much. And if it makes even the last 1% difference between me staying well or becoming ill again, then that little effort is well worth it. If I add it to running, and CBT techniques, and better food, and listening to music, and all manner of other things that might improve my wellbeing, then maybe they’ll add up to just enough to get me through the dark times.
And, like crowdfunding might, at some point in the future, mean that we can amass enough money for a private assessment, all the thoughts of the people and offers of help add up to make something pretty big too. Offers of finance, contacting people, sending articles, comments, lamps, pictures on my facebook, parents valuing my experience, even prayers, all add up. Maybe one of these things will be the last 1% that keeps me going through one of the darker moments? Who knows. I’ve also had a massive amount of help from a very small group of friends who listened to me for months before the first assessment – they happened to be in the right (or wrong?) place at the right (or wrong?) time and ended up witnessing several months of extreme moods and so on, so they’re probably very grateful that this is all now public and there is so much support from everyone else! They have been, as we say round here “totes epic”! There might not be much in the way of official support around, but the informal support from friends has been utterly fabulous.
I might not always be able to respond to all of this with much more than a “thumb/like” on a message, and it’s still all filtering in to my head. The best I managed to do to thank folks up until now was the poem I wrote a few blog posts ago, and I’m really not that much good at the whole feelingsy thing. But hopefully you’ll all get what I mean.