Back in my 20s, while doing a lot of martial arts (up to 5 2 hour sessions a week) I started getting problems with my knees. And sometimes my hips. And I had them checked out by doctors, had tests for arthritis (runs in the family) and no one could find anything wrong with them.
Fast forward through 20 years of hip and back pain, sciatica, physiotherapy and so on, and finally an antenatal physiotherapist calmly noted that my legs are different lengths, which twists my pelvis and back and causes a multitude of problems. She prescribed a raise, that I wear pretty much all the time, and it solved the problems. I’ve had very few issues since, and I’ve even managed to take up running, and run a 10k.
My hips, knees and back aren’t the only problems I’ve had all my life.
I’ve been diagnosed with anxiety and depression many times. I’m frequently (nearly always) lonely. I don’t get people, in person. I can’t follow conversations where lots of people are talking, I constantly miss the subtexts. (I have some peculiar sensory things going on. Please don’t wear velvet near me.)
I’ve just been diagnosed as on the autistic spectrum. Given my intelligence level and ability with words, the most appropriate diagnosis is Asperger’s Syndrome.
How do I feel about this?
It fits. In the same way that discovering the leg length difference explained all those physical issues, this explains oh so very much of everything else. I feel a sense of relief, along with a nagging irritation at all the people who dismissed the difficulties I experience with comments like “oh, everyone feels that way”. You know what? I don’t think they do.
There is only one problem. No one has invented a raise for the brain, so I can’t just wipe out 20 years of emotional difficulties in the way I did the back pain.
But. Another thing.
These aren’t only my problems. This is partly to do with societal expectations. There is this idea that it’s necessary to be the life and soul of the party, to be able to laugh, and joke, and carry on in a crowd. Not everyone can. Not everyone wants to. And there is absolutely nothing wrong with that. I would very much like to enjoy some social occasions. They don’t have to involve hundreds of people and lots of noise. If they do, I can pretty much guarantee that I won’t remember half of the people that I meet. I’ll smile and say (hopefully) appropriate things – but I won’t necessarily make a great deal of sense. And if I make it through the whole day, I may be silent for hours afterwards, and feel a need to go and stare at the sea.
I love the sea. It grounds me. I miss my running – I haven’t been running since the thing. I think I might start walking – walking should be OK, shouldn’t it? Is running OK? I’m waiting on test results. The likelihood is that the thing was just a faint, but it’s come on top of all of this diagnosis process and it’s just made everything that much harder to deal with.
That’s life, right? We all have our things, someone told me that the other day. It made a great deal of sense at the time, but I can’t now remember who it was. Sorry.
But yes, overall, relief. This is me. Some bits of me are different to lots of you. But I’m still the me I was before you started reading this post. Nothing has changed. Has it? Will you think about me differently now?
Lulastic says
I love this Jax. Thanks for sharing some stuff that is pretty intimate. I’ve always thought that a diagnosis must in some ways be deeply liberating, but equally frightening.
And, yes, it is largely society that need to wrench itself into a much more accepting and inclusive position.
Jax Blunt says
Yes, there’s a real mix of emotions attached. And this is several weeks after receiving the actual letter! Today was the debrief though, and I felt like I’d worked it through enough to write about it.
Any ideas on how to give society a shove?
Mummy Glitzer says
I hope you get some answers around the thing. I think I understand what you mean about having a diagnosis, it definitely helps to be able to explain things and as much as I dislike labels at times, to put a label on something. The sense of relief I felt when I knew why I had constant headaches, back problems and mobility issues was immense.
Jax Blunt says
There is a relief that it’s something that can be understood I think. And answers around the thing would be good. Thanks.
Susan Mann says
Having met you on several occasions I think you are a wonderful and interesting person. Everyone is different and like you said has their things. I think we are all different, our own unique selves. I hope having a diagnosis helps you get your head around things. An honest and open post. Hugs xx
Jax Blunt says
Thanks Susan. I’ve really enjoyed the time we’ve spent together – I wish it wasn’t so short and far apart!
Midlife Singlemum says
I don’t think any differently about you – did you write something like this last year? I seem to remember saying this before. I used to be a life and soul of the party type but now big crowd events leave me cold. People change and evolve and it takes all sorts to make a world. I think the me now would enjoy your company very much.
Jax Blunt says
I wrote about my suspicions after doing a Internet test. This is the full diagnosis, psychologist, the works.
looking for blue sky says
I like truths, I dislike it when people hide things about their lives, giving a false impression. I admire you even more for being open and honest about this and I’m glad it brings you relief. I’ve no problem about admitting to my social awkwardness and the likely hood that I am on the spectrum somewhere, hopefully it will mean that people will be a little more tolerant… to both of us xx
Jax Blunt says
thank you. I couldn’t imagine not writing about it to be honest, it was just how (and maybe when) I wrote it.
Anne-Marie says
Feel any different? Just happy for you 🙂 Also hopeful that I’ll find that relief soon too, which will be all thanks to your posts and support. I don’t think you need a raise for your brain either, you’re perfect as you. Some more understanding from the world would be helpful, but we can work on that 😉
Jax Blunt says
I’m hoping that you get the answers you need very soon. I don’t think the people running these processes have any idea what affect they are having on people.
Emma says
I’ve read your blog on and off for years, having once been part of the original Muddlepuddle blog ring.
I’m currently awaiting diagnosis for my youngest son. It’s been dragging on for rather a long time but although it won’t change the way we look at him or view him, a diagnosis will make everything fit.
I hope that society will become more tolerant towards autism. There’s certainly a lot more information readily available about it, but I do worry how my little man will go through life and get on with social situations. It’s very interesting to read your post and I believe that people speaking out and being honest will help to break down the social barriers and intolerance that society often has about autism. I believe a lot of it is due to them not understanding the spectrum.
I am interested that they gave you an Aspergers diagnosis. My son’s consultant recently told us that they no longer separate the different autistic ‘labels’ but instead everything comes under the one umbrella of having an ‘autistic spectrum disorder’. We both know that my son has Aspergers but he won’t officially be diagnosed with it apparently. It seems a shame after I’ve read so many books about Hans Asperger and his work.
As an introvert, I’ve always found large social gatherings not to my taste. I like my own company and I’m not afraid to say so. I’m certainly not the life and soul of any party, nor would I want to be. I understand your feelings about being around crowds of people.
Good luck as you share your news with the people that know you. I hope no one treats you any differently. You’re still the same woman as you were pre-diagnosis.
Jax Blunt says
Hi Emma, thanks for commenting.
The diagnosis process seems to differ massively from area to area – I know that Asperger’s Syndrome is a part of the Autistic spectrum rather than standing alone, so I think it’s valid to have a diagnosis that specifies the subset but still accords with the DSM-V (I think that’s the right terminology).
I do feel that being open about the diagnosis is important for the children that come behind us – and also to make people realise that children don’t grow out of this, we are still here, even if we didn’t get the label in childhood. I think there’s a lot more understanding out there than there was, but we’ve still got a way to go.
Tech says
Is it ridiculous to be relieved that you got the dx? Even if it is, I am. So glad you’ve shared it.
Jax Blunt says
If it’s ridiculous, then I’m ridiculous right alongside you. 🙂
Mrs Teepot says
Well I certainly don’t think of you any differently.
When I was diagnosed with my mental illness I felt relieved too because I felt I could explain to people why I was ‘different.’
Jax Blunt says
Yes, there is a part of that, having an answer to share feels like it might be helpful.
globeonmytable says
About rattling society’s cage…I do it with my use of language. So I refer to a school which didn’t spot the signs, a situation which isn’t right for a person, or that a person particularly likes things like this, rather than like that. See!
My mission is now life-long and is part of what I do every day. The pen and the voice are mightier than the sword.
SophieRunning says
Hello Jax. This is a very eloquent piece. I don’t think of you differently. We are all different! Let’s embrace it. Best wishes – and sympathies on the running. I hope the thing gets resolved soon.
Jax Blunt says
Thanks Sophie. Embracing differences definitely the way forward. Fingers crossed on the thing.
Coombemill says
Fascinating to read and what a discovery now, I so hope you find strength and belonging from writing this. The feeling lonely bit got me, such a horrid feeling and so hard for those close to understand. I really hope the diagnosis helps you, you are so clever and helpful to everyone on line, I hate to think of you as feeling lonely ever.
TheBoyandMe says
I will think of you the same way that I always have; you’re Jax. And I did think Asperger’s rather than Autism. Big hug.
Jax Blunt says
Thank you.
Downs Side Up says
Jax this is beautifully written, despite being so very personal. The way you describe Asperger’s so very perfectly descibes many people I know. And like you, they are wonderful individuals too. Hayley x
Jax Blunt says
Thank you.
Mel (MilkChic) says
While a diagnosis might change things for you internally, giving a name to your feelings and experiences, you are still exactly the same person you have always been – why would anyone feel differently about you now?
As someone who probably isn’t on the autism spectrum (I come up as “borderline” on the online tests), I struggle terribly with social situations but am able to make connections with people who I genuinely share interests with. I also find solidarity with other socially inept types hiding near the food at parties…! It takes all types to make life interesting and not all of us can be social butterflies.
aendr says
Gosh, Mel’s comment could have come from me.
I too am not spectrum (as far as I know), but identify with you. I struggle with social situations, am not quite sure how far to take conversations, need time apart (the kitchen is a good place to be at a party, because I can be doing something with my hands and head, rather than just “socialising”), struggling to remember who is who, to follow noisy or distributed conversation, and I hate velvet* (how do you feel about chalk boards?) I’ve taken to taking sewing everywhere (particularly children’s parties) because I can focus on that and don’t then have to socialise with people I have little in common with, and it also gives me something to talk about that I am confident with.
*Bess was banned from using velvet on Hettie’s Victorian dresses she made for her. I do NOT want to touch the stuff. *shudder* Dislike cord too.
I will admit, I do think of you differently, well, since the diagnosis stuff started (rather than from this post per se.) But it’s not negative. I am /more/ impressed by/in awe of you than previously. I would like to be as calm with my children as you are with yours, do as much with them, manage so well, and then you have something more to struggle with on top and .. wow.
Tamsin says
Why do you think anyone would think of you differently? Parts of everyone are different to lots of other people – it’s the beauty of life. Even those who you might not think of as “different” could be/will be walking around with lots of stuff you don’t know about. Do you think of people differently when you find out more information about them or do you thank them for sharing that with you..? Are you expressing reality – or your perceptions? I’m not trying to criticise, but to challenge your thinking, because you are criticising others for generalising – by generalising!
Labels and their impact is an interesting one. I’ve certainly found being given a diagnosis (for something different, but chronic and not able to be medicated away) positive, in terms of relieving the ‘is it me?’, but I’ve also seen a frightening number of people take the same label and use it to excuse/explain everything under the sun – especially things they don’t like/enjoy/want to do. A simple example of this is (on a condition-specific message board), a post about rehabilitation programmes (which involve exercise, commitment, increased pain but massive long term benefits) receives a handful of replies. One about how to claim benefits/get a blue badge etc gets so many it runs to pages and pages. The condition becomes such a massive “definer” of who people are they can start to lose the rest of themselves. It’s difficult to get the balance right between processing/understanding/accepting and moving forward regardless.
At the end of the day – we’re all dealt a pack of cards – sometimes we need to study them, think about them and even think about what others therefore have (or are at least bluffing with) and sometimes we just need to get on with making the best of what they are.
On another note – Have you read “the power of introverts” – it’s good! But I’d also recommend several of the works on happiness – there’s great evidence that a huge amount of how we feel can be mediated by our own behaviours. I’ve done a happiness course and it worked for me – but I still practice as often as I can – because it feels bloody great to do it!
Take care and look after yourself
Xx
josandelson says
you’re alright Jax. Jo xx
Jax Blunt says
Thanks Jo. (Did you see I’ve taken up drawing? )