When your communication needs can't be accommodated

At the risk of becoming ranty, I'm turning to trusty Mr Blogger once more to solve all my life's problems. I mean, to help me process things that happen and deal with my emotions in a non-destructive way, of course!

I have a particular problem at the moment and I can't find a way to solve it. I've tried really hard to make it work and I've resiliently asked for help and expressed the problem multiple times, but to no avail. Hence I fear this is just going to turn into a rant.

I knew there would be difficulty in having all my post-discharge support remotely (in hospital, I had support to access remote appointments and to debrief after them and still had trouble managing), and I knew the adjustment from 24/7 care to 2 remote appointments a week would be challenging. I also knew that the phone and video calls were my only option, so I got on with it. I found things that helped: using my headphones so I can hear better and am not filtering out extra sound to hear the voice on the other end, buying extra data so I can take my support team for walks - it's easier to engage and process when I'm outside, and once I've used the movement to help me regulate at the beginning of the call I usually feel better able to sit somewhere and manage the rest of it. I take time out in my sensory cave when I'm feeling overwhelmed after a call. I am trying so hard to make it work.

All these things help, and mean that on a good day I can get benefit out of an appointment even though I come away exhausted and often realise shortly afterwards that I didn't say what I needed to say, or that I didn't process something properly and missed out some conversation that could have really helped both of us.

But on a bad day I can't communicate properly. I can't say things at all so the person doesn't even think I'm communicating (often they probably think that I'm managing with the remote conversations because I am engaging and talking about some useful stuff). They go away because they think it's a bad time to talk, and I'm left feeling even more alone, hopeless, trapped and useless because my one chance at getting some help has failed. I have to survive until the next opportunity. Which I still can't access properly because I'm still autistic. 

I have a meltdown afterwards. The only way I can get help is by dialing another number. I don't know why I think this will help. Maybe I don't, but it's the instructions I've been given and it's my last shot at trying to help myself. I'm working on resilience. Keep on trying. Unsurprisingly I struggle with that phone call. Eventually they get some information out of me. They say they'll get my nurse who knows me better to ring me back. I can't tell them that I've only spoken to her 4 times anyway and another phone call is going to add to my distress and overload, not solve anything.

She rings back later and it's a disaster for both of us. She shouldn't have been put in that position, but it wasn't anyone's fault. I couldn't give them the information they needed. I'm the problem. Another meltdown. It's a good job I've lost all sense of public decorum or awareness of anything beyond my distress or I'd be very embarrassed by my behaviour.

I get home and stay safe the rest of the day, thankful for the presence of Mr Peggy. All the blankets, time to write an email apologising for my distress on the phone and trying to explain my problem (this email to send via my other nurse, because they're the only one I'm allowed to email). Comedy TV. They all help me keep calm until the night time. The odd half hour of sleep here or there. The anxiety builds before the second of my scheduled phone calls of the week, with the poor Peg from yesterday. I can hardly bring myself to answer it. It's my last attempt at engaging in this remote support - I'm going to have to go it alone after this. I know where that is likely to lead.

The phone call doesn't help. She can't fix anything (not her fault), I can't fix anything. She goes away, not wanting to overwhelm me with telephone conversations, but meaning I'm support-less for another 8 days. "Ring the office or the crisis team if you need any more support." Great plan.

I've tried all avenues, so I guess it's like it's always been: you have to cope alone and you should be able to. I spent seven months being told it's OK to be different and have different needs, and being helped to work things out, but none of that's true in the real world. Your needs are unreasonable. The 8 days may well be longer, because I'm not sure I can face the disappointment and distress of another phone call and its aftermath. 

Sometimes lockdown is really 💩

And the OT, insurance people and car servicing people trying to ring of me may as well go stick their heads in an oven (although actually, often if you explain your difficulties they do accommodate and communicate by email...).

Happy 6th Birthday!

I realised today that this week marks 6 years since my diagnosis and due to a conversation I had during the week I thought it might be a good opportunity to think and write about what my diagnosis means to me now and how that has changed through the years.

This assessment concludes that [Peggy] does have Asperger Syndrome and meets the criteria of the DSM-IV and ICD-10 due to difficulties in:  

1. Social Communication
2. Social Interaction
3. Flexibility of Thought
4. Unusual Sensory Experience

And there we have it. Just like that, I was autistic. The report was nine pages long, and reflected a little more deeply on the details but that's the bit that says it, that changes my categorisation as a human being.

Of course, it doesn't change who I am and always have been one iota: the sentences following the one above declare that "The information provided by [Peggy] and her family indicate these difficulties have been present from a young age. Over time, she has developed a wide range of impressive coping strategies to manage her difficulties in social communication and interaction - often masking the degree of these difficulties so that others are perhaps unaware of their impact."

I consider myself lucky that the process and the report were smooth for me, and the approach very balanced: both the difficulties and the benefits of being autistic were highlighted and addressed in terms of their pertinence in my own life. Reading stark facts like the quote above can feel jarring, but they were given in a context where care was taken to specify my strengths and potential alongside; a lesson that I hear could be applied elsewhere. I wrote a little about the lead up to my diagnosis and initial reactions in my first ever post on the blog, Officially Square.

That post was written nearly three years after my diagnosis and at that point there were very few people party to that information about me. Three family members, my fiance, two friends (I think... or I may not have told them by then) and two or three colleagues. I didn't publicise my blog in case someone figured out that it was mine. I swore everyone that knew to secrecy.

From this behaviour you would be forgiven for thinking that I was ashamed of my diagnosis. On the contrary, I was hugely relieved and mostly very happy to receive official confirmation of what I had suspected for the previous three years. It made sense of my struggles since childhood (that I had obviously failed to share with anyone because, you know, social communication...), my different experiences of the world and my differing needs. I'm not wrong, I'm just a different kind of person and sometimes I need to live a little differently, and that's just fine. In fact, it's good in many ways. I can understand myself better now, work with my strengths, learn ways to cope with my difficulties (still working on that!!) and explain myself to others with more confidence and accept my differences with self-compassion (sometimes...).

So why was I so adamant that nobody find out? One reason was that I was terrified they wouldn't believe me and would think I was making it up either as an excuse or to gain attention. As pointed out above, I have an impressive array of masking strategies, so to disbelieve my diagnosis is in a way complimentary to my efforts, but it would also greatly invalidate my hard work and times of intense distress. I wasn't confident enough at that point to defend my diagnosis because it still didn't feel quite right that I really qualified to be described by the criteria above. Six years of self-observation leave me rather more convinced. Along with the fact that not a single soul has challenged the diagnosis, though many have shown surprise.

I also worried that people would look at me differently once they knew. To a certain extent this still applies. Perhaps not so much as a worry, but I like to choose when and whether I disclose. I worked for my mask and I usually still use it when I meet people because I don't want their impression of me to be formed by their idea of autism; rather, I want to inform their idea of autism. I am me, and me is autistic, so this is one way autism can look. Not, she is autistic so she must be [insert characteristic/behaviour here].

As time went by and I gradually needed to inform more people (changing jobs was the main catalyst for this) I discovered a pretty much universally positive reaction to disclosure. My first experiences weren't just a happy coincidence, but most people find it interesting and useful to find this out about me (assuming we already have a positive relationship), and it helps them to be considerate of things that I find really difficult. 

So nowadays I don't hide my diagnosis, and I tend to mask less. I don't wander round telling people just for the fun of it and there are still more people who don't know that do know, but I can talk about it as a normal part of conversation and this has been helpful in many ways. I accept myself and my needs because I understand why I am how I am. I am becoming more confident in saying I'm not going to do things because I know they will make me unwell or increase my stress levels, and I don't have to be the same as other people in order to be a worthy member of the human race. If something is bothering me I'm more likely to verbalise that now, and even if it doesn't change the situation it helps my internal state. I will engage is certain regulatory behaviours in some public or social situations because I know those people won't bat an eyelid because they know me (there are many others I still keep private). Because I have shared, my colleagues can help me when I'm in crisis, and they can help prevent me getting to crisis.

Was it worth seeking a diagnosis for something I already pretty much knew? For me, yes. And even more so than at the beginning. Personally (and this is not the same for everyone), I could not have assimilated autism into my understanding of myself without a formal diagnosis. I needed that to begin to accept that I genuinely have a reason for what I now know are my autistic traits. I'm not just wrong or weird (although I am pretty weird!). I can get the support I need at work, which I wouldn't necessarily without a diagnosis. I understand and therefore accept and can help myself so much more than I would be able to without knowing this about myself, and I can help others help me too, and I can broaden their world by exposing them to people whose brains work a bit differently. 

Am I proud of being autistic? Not particularly. Am I ashamed of being autistic? No. I just am. Would I be proud of being 5'7"? Or ashamed of having size 6 feet? These are all just thing about me and knowing about them helps (imagine trying to buy shoes if you didn't know what size your feet were. It would take a lot more effort!).

Happy 6 years.

Please ask if you have questions about my experiences pre- or post-diagnosis - I feel like I haven't quite managed to capture everything here and different nuggets will be helpful to different people at different times :)

Accepting Today

Different days are good for different things.

Just because you can’t do something today doesn’t mean it will always be like that*. When I feel like I can’t do something, I can’t imagine ever feeling any different about it: it is absolutely my truth. But that’s not true. I am finding that if I let myself not do the thing, there often comes a time when I feel able or even willing, to do the thing. That time often comes far sooner than I expect, and I suspect it is related to accepting my needs in the moment and giving myself the freedom to do or not do as is best each moment.

The more I pressurise myself to do something, the more I cannot do it. It is more than resistance I feel: an impossibility. I am scared, feeling almost literally petrified - if I must do the thing, there is no way out, no option or safety net if for some reason I fail. I get caught in the dilemma of “I can’t do the thing and I can’t not do the thing” and this is when my brain implodes and off I go into threat system (fight/flight/freeze - I am a freezer, hence “petrified”). Acceptance is an exit from the dilemma that leads to crisis.

Actually it turns out that whatever I can do today may not be the same as what I will be able to do tomorrow, and it may not be the same as what I could do yesterday.

And that is OK.

Some days I can use all my
tools to make a moment of OK

Some days I can’t talk but I can write. Other days I can seek out a friend to help me.

Some days I can read but I can’t think. Some days I can think but I can’t read!

Some days I can’t stop thinking but I can dance.

Some days I can’t dance but I can wrap myself in a blanket.

Some days I can’t eat; other days I can’t stop eating. Some days I can be balanced.

Some days I can’t leave the house but I can support a friend over the internet.

Some days I can push myself; some days I push too far. Some days I can show myself compassion.

And that is OK.

Some days I can play upside down!

Every day (and moment, because these states rarely last a full day!) is different and every day is a part of my life that I can choose to accept, whether or not it’s what I hoped or planned for. When I choose to accept my truthful state of being regardless of how I might be inclined to judge it and of how it looks to other people (Although please take note - it really does make a difference if those around you are accepting too. It is an exhausting fight to accept the unwanted sides of your life), I tend to have a better state of wellbeing and a higher probability of positive change.

I dare you to give it a go: try being kind to yourself instead of beating yourself up. Cut yourself some slack, listen to your body and believe what it tells you for once - it may just be right.

*A couple of disclaimers here:

1. I am purely talking about psychological “being able” to do things here: having limits to physical ability to do things is another matter entirely and probably approached in a completely different way. Sometimes my psychological “not being able” to physically stops me from being able to achieve the activity; other times I could theoretically do the thing but I know that it is not a good idea to. I am working on categorising this as a “can’t” to combat the very powerful “should”s in my Brian!

2. This does not mean that I never challenge myself, that I “let myself off the hook”, stagnate or gradually shrink my life to a sad place, although I do sometimes miss out on things I would like to have done. On the contrary, experience has shown me that through accepting when I can’t, I actually have more occasions when I feel able to do more than expected, or I feel more able to take those opportunities or risks because I know I have a safety net or an option for “failure”. I am also more likely to enjoy and be successful at the things that I do do. I am more likely to push myself on the things that matter rather than indiscriminately spending my efforts trying to do everything including things that are potentially damaging, or bring difficulty with no benefit.