Bad, broken or different? I need to be alone

Like many others, I have lived most of my adult life in perpetual pursuit of treasured time alone, getting through whatever is happening by aiming towards my next good chunk of alone time. I'm always on the edge (or ever more frequently over the edge) of coping, feeling that things are going to fall apart any minute. The last couple of years they very often have done. Shutdowns became increasingly common, they started to affect more and more situations until I just couldn't function effectively.

Usually I need to be alone...

I've had quite a groundbreaking realisation after being in hospital for an extended period. The first few weeks I spent in my room whenever that was an option. I was settling, learning a new place, new routines, new people and processing a whole load of crazy stuff. Hours and hours of alone time. About four weeks of it, I'd say. But eventually I started to venture out. Optionally spending at first little moments of time in communal areas, then slightly longer periods. I now actively enjoy and choose to spend time with peers. I would rather be with them than alone when I am dealing with difficult thoughts and emotions, which is a new and unexpected experience for me (feeling inclined to be around others when struggling, not dealing with difficult things!!). Admittedly it is an unusual environment, where all the people have certain similarities in our brains, and I don't think it's unfair to say that the amount of care and understanding and support is unparalleled, at least in my experience.

But it shows me something new about myself that I never expected. I'm not a bad person, and I don't hate people. When the input is reduced down completely to below my threshold (And this was to zero, for an extended period. It's a funny experiment/opportunity that you'd never be able to run in real life, but retrospectively I'm so glad that it's come about!), I actually choose to be with people. I want company; I want to feel connected. It's just that I require so much processing time to stay regulated and avoid becoming overwhelmed by the anxiety and emotions that build up from being alive. My capacity for effective and beneficial social interaction is tiny. I need to stop before I feel like stopping in order to avoid delayed overload.

It makes me feel a little sad and hopeless, because I can never be as big a part of things as I want to be if I am going to live my life in a way that's manageable for me. I won't know people as well as I would like to. I won't be such an integral part of groups or such a support to friends and family as I would like, because I can't survive long term if I do all that I want to. I have to miss out, and people have to miss out on me. I feel like a broken human - one that doesn't work properly. Even being in touch through electronic means has a drastic impact on my coping levels. I don't know what this means for how I manage my life as I rebuild it.

But I'm still glad that I've had this opportunity (despite how it's come about - every cloud has a silver lining and all that) to see what happens when I take normal life away and start from zero. I'm grateful to have discovered truths about myself that I never would have found out by any other means. It allows me to be a little kinder to myself, and to know "me" a little better.

 

For the minute, I'll sit in my tree and try and be alone as much as I need to.

When "no" is not an option

As a follow-on from my previous post, I want to share an experience I had in the hospital. Be warned this may be upsetting (powerlessness, medical procedures), so please consider first whether you wish to read this post or not.

I had one of the most terrifying moments of my life on my third day in hospital, and here I am not exaggerating. I consider myself highly privileged that this is a feeling I haven't experienced until now: I know that many, many people have, both in a medical context and other situations.


I'd had a piece of equipment fitted on AMU on Tuesday. This was painful, upsetting and far worse than I had imagined it would be, but I had been warned they are not pleasant to have fitted, so I coped pretty well. Even when I could hardly utter a word afterwards, and move/breathe little without coughing. The doctor didn't seem confident and sure enough after a multiple-hour wait and a move up to my ward, as soon as eyes were cast on the positioning x-ray it was out as quick as you can say Jack Robinson.

I prepared myself for the re-application (sooner than I thought - I'd originally been told it would be the following day, but with good support I coped when it was sprung on me that it would be immediate), this time by a reassuring, experienced nurse who was very calm even though it was really difficult to get placed, took his time, mixed humour with understanding and we all got through it together. It was still painful and traumatic but after doubt about the position imagine the party in Side Room 28 after x-ray finally confirmed it was correctly placed. Three people have never celebrated bodily fluids so enthusiastically!

I went to bed happy that Tuesday night. The equipment was finally sorted, I was on the right ward that knew how to do things, the nursing and care staff were super attentive, supportive, helpful, and enabled me to take on challenges I didn't think I could achieve. What a healing environment. This was beginning of the way up. I slept.

Just before waking, I dreamt I pulled the equipment out and it had to be reinserted. The panic was real. I woke. The panic had faded but I was a little unsettled by the whole experience of being here, in hospital, monochrome, bright lights, machines and equipment. And the kind night staff from the night before had finished their shift. I managed to keep my anxiety under control. Then I pointed out the leakage from my new equipment overnight and a fault was discovered. "It'll have to come out."


Well that was the end of that. I burst into tears of panic. Nobody was going near me again thank you very much. There had to be some other way. An unknown doctor came in with a friend early on morning ward round to explain to me. "It's not supposed to hurt" (Ah, I'm glad you told me that - it mustn't have hurt after all, my mistake...??!) "It's very unusual to have one damaged, you've just been very unlucky" (I'm glad. Does that solve the problem though?) All I could do was sit and sob and refuse and make a request that I see the doctor from the Liaison team before they did anything. I am so unbelievably glad my mental health team had drilled into me that I could do that. The doctors left me in shutdown, simply saying "We'll come back after ward round and do it then."

It was at that point that I realised I had no choice in the matter. If I kept on saying no, I would simply be presented with the Mental Capacity Act and the procedure would go ahead anyway. I have never experienced such a feeling in my life. Complete powerlessness. Utter terror. No escape. I am a compliant person and if I get round to saying no there is a mighty good reason. Such as "I don't see how I can actually survive that happening again." But nobody knew that, and even if they had it wouldn't have made a jot of difference.

How often do our children with complex medical needs experience this? What does that do to a person, to repeatedly have to keep living through that? Babies are operated on without anaesthetic. Adults and children with learning and physical disabilities are abused. Men and women are assaulted.

I was lucky. My request to see the Liaison team worked not because she said anything different, but it bought me about 4 hours of processing time. I managed to calm myself and face the idea of allowing another traumatic procedure. She also made the suggestion of a tiny dose of Lorazepam to ease the process, which nobody else had offered (although I do note that when the doctor came to do the procedure later he didn't offer it or wait for my request as she had said but explained that he would bring it and I would take it... I suppose he probably had a rather inaccurate understanding of me as the only time he'd ever met me previously was in meltdown that morning...). Turns out, third time lucky. It worked how it was supposed to. Not comfortable, but quick and pretty easily bearable once complete. Others are less lucky and for that reason I will not forget those moments of utter powerlessness and panic.

Surviving Hospital with Autism

Some of you will know I've had a recent stay in hospital. The experience was a mixed bag, some of which I would have expected, and some of which I didn't consider until it happened. Writing this helped me reflect. It's a jumble of thoughts and may not be very coherent but I wrote it for me, not for you! If for any reason you fancy a snapshot of life in hospital as an autistic person, here you go. If not, move along to a more interesting post.

Questions to consider (not addressed in order or even answered, but points for thought by you and me!)
What should be minimal expectations?
What is good care?
What is really excellent care that makes all the difference?
What could hospitals do to help autistic patients? What would have helped me?


"Welcome to hospital/Ward XX" pack would have been helpful. Including

• What happens when on the Ward? Meal & snack times, meds times, staff changeover times, ward rounds, get up and bed times, if you are here more than X days you will be given an injection to avoid blood clots from immobility but you have a right to refuse this
• Whom to talk to about what: who does the meds, who do I ask if I need water/shower/toilet/something is broken (responsibilities of the different roles and what I might need from them - job title and picture of uniform?)
• Details of where to find information eg. where the board with staff lists for the day is (for the first ten days I would go to bed literally not having a clue who would be there when I woke up - whether I would have met them before or not, whether they would be kind or not etc etc), how to fill in the menu
• Details of possibilities/services eg. Going to chapel on Sunday and who to ask about this, Liaison Mental Health team, Chaplaincy, Learning Disability Liaison team, Advocacy? And explain what these services can do for the patient and how to access them.

An "All about me" for my file and maybe to put on my door or bed, just for really important things, eg.

• I have autism
• Please give me time to process information/decisions (come back later rather than wait 5 minutes)
• If I am distressed please give me my blanket
• I am very compliant. If I show noncompliant behaviour this means I am very distressed and struggling to cope. Please give me some time (30 mins upwards), an opportunity to talk with someone I trust (eg. next of kin/mental health worker/trusted ward staff) and explore the reasons with me before enforcing anything. Consider asking to talk to the person I trust, who can interpret my communication.

Things that happened

I worked really hard to try and ask questions I needed to ask, be aware of my needs, my right to exist in the environment and communicate those to others. This was exhausting.

I was very chipper the first few days, had a very skilled and compassionate welcome onto the ward, felt very safe, empowered, hopeful. But struggled with all the staffing changes, suddenly not knowing anyone, not knowing who to expect, feeling lost, small, scared and vulnerable.

It helped to be told specifically by two different people (community nurse and one staff nurse) "This is your express permission to ask for anything you need, or anything you want to know." This gave me the confidence to actually be able to be brave and ask some people some things some times. Often I found it difficult to think quickly enough to ask the right questions because you only see people very briefly and don't have time to process what they have told you, and therefore consider the implications of that and whether it inspires any questions. Equally, I often don't realise I can question things or that there is something else to know. I worked hard at writing down questions I had and being armed with them the next time that person popped up. Always providing that I recognised them, of course!

I had excellent care from my community team and the Liaison Team, who made sure I was seen every day or two (except at the weekend when they are on call) to check in with how I was doing and keep me updated on my plan and next steps. This was much more beneficial to my wellbeing/recovery than the actual "hospital treatment" as such, which was by nature very medically-focused. My hospital experience would have been unrecognisable and much more terrifying without them.

One professional wrote a plan without even speaking to me or telling me who she was - the only reason I knew I had been "seen" by her was that I was still on AMU so saw her putting my notes back in the end of my bed and her ID gave her job title. I'm glad I read what was there then, because after that I was told patients aren't allowed to just look at their notes, they have to make a request to see them. My mental health team are much more patient-centred and prefer to work by collaborating and sharing plans. This approach makes me feel safer as well as more empowered. Some members of staff were more willing than others to share details. I felt more able to ask some professionals than others. Most staff did introduce themselves, although I did have trouble remembering who they all were. Some staff (particularly MH) asked when they came in each time "do you remember who I am? I'm Dr Bloggs and you saw me on Friday in outpatients". That was really helpful.

When I thought to ask a doctor whether I still needed the cannula I'd had in a couple of days as it hadn't been used since A&E, he said I would be receiving my vitamins by IV, yet I was consistently presented with them orally. Taking them orally was really stressful. When I had good support I could manage, but wasn't sure why the doctors were saying one thing but nurses giving a different one. Little things like that as the ward settled into its routine did worry me, in case there were things I didn't know about that weren't being done right. It took a day or two to settle into all the correct observations being taken at the correct times. Yes I know I'm a control freak, but also, there are so many people working on so many things that it's really easy for things to get lost so I don't think it's necessarily a bad thing to be informed about what care or treatment you should be getting.

I had two big shutdowns within four days of being on the ward. The first was the understandable result of some slightly traumatic experiences in my first couple of days, that anybody who had witnessed would think reasonable but probably appeared out of proportion to the poor doctor who'd never met me before (see "When 'no' is not an option" post).

Wobble two came at the end of Thursday. My treatment had been upped late afternoon so I was feeling a little unsettled and I'd had a funny meeting that afternoon with my care co-ordinator (I wanted to talk about how I was feeling about things, but still had another visitor so couldn't access that level of content to discuss. Which also meant I felt we didn't get as far as we could have in conversation about next steps: frustrating). So I was a little wobbled by these things but looking forward to the night staff coming on, letting them know, being supported and getting over this hurdle. All the staff were different. It was so unexpected that I couldn't do the sharing even though they did ask how I was. I thought to ask a question I'd been pondering as to where I could find my notes and was informed patients aren't allowed to just look at them, they have to make a request. The spark was gone, I couldn't take the steps I'd been able to take in the previous few days and I felt alone, lost, vulnerable, misunderstood and a failure. What a difference exemplary care can make - the whole package, both bedside manner and sharing information. It all works together towards patient care that either intimidates and hinders progress despite medically improving or brings the kindness, hope and calm needed to move forward.

It was a bad night. I eventually slept a little. I determined that today is a new day. I got complained at by a woman on the bay for using their toilet, which I had been told to use (I usually use the other bay because it's closer but they had a long queue, so another lady from there had also used this bay). I didn't let her talk me down but was really upset afterwards. And do you know who saved this morning for me? My cleaner and the student nurse who was changing my bed. The cleaner was in the bay and took my part when the lady picked an argument with me, and when the girl came in to do my bed she was really kind, having a chat and saying if I'm feeling down and want to chat or anything just come and say hello. My cleaner came round at lunch time and had a good old natter about the lady and what else she'd been up to while he did my room. It doesn't matter who it is: those are the people that are doing patient care. The staff nurse, the cleaner and the HCA. Thank you for being light.

Later in the week I had a difficult night with events on the ward messing with my head. I eventually plucked up the courage to ask for something to help with the sleep/anxiety  (because it had been explained and reiterated by Liaison Team that this was acceptable and sensible in these circumstances) and the kind nurse from the first week went above and beyond the medication, coaching me through my distress, which led to a bit of a groundbreaking moment in recovery.

My community team similarly supported me through a massive moment in recovery with enormous patience, insight and understanding.

I was moved without warning from my side room onto the bay straight after an important and slightly overwhelming meeting. This is just a part of hospital life and there's nothing they could have changed about it, but it was difficult to deal with and led to the fourth wobble of my stay. I was less relaxed on the bay but coped surprisingly well.

I was always welcome outside at the nurses' station on a night if I had work to do or wanted some space or a cosy corner.

I managed to ask for most things I needed (although I never once used the nurse call button...), and on the days when I hadn't ordered food for a certain meal I was offered, in such a way that I could do more than I thought possible.

As I became more healthy I was more able to build relationships with people I was scared of to start with (and I became more familiar with some of the faces too), but I'll never forget what a difference it made that there were some that could bridge that gap for me when I was so poorly I couldn't do it for myself.

Kindness

I've been pondering for a week or two on the subject of kindness.

The more I ponder, the more I realise that kindness is really everything. I haven't just been pondering; it's been the defining theme of the last two weeks, demonstrated in such inescapable practical demonstrations that I couldn't help but become fully aware of the power of kindness and the comparative effects when it is lacking.

For those of you that don't know, I've had a recent spell in hospital. Many aspects of hospital life and the treatment I was undergoing can be overwhelming for anybody. Patients in a hospital environment are by definition extremely vulnerable. They are in a foreign sensory and social environment, the relationship is unequal in terms of physical power, knowledge and social power. Emotions are already stretched by being ill. Control is taken away, routines are different, treatments are given abruptly and the degree of explanation and processing time varies from professional to professional. For people with autism, whose anxiety levels are already elevated and processing times longer, and who depend on their familiar routines and sensory environment to remain regulated, these changes can be even more challenging.

More to come on that in my post about experiencing hospital as an autistic adult. What I want to talk about here is how these effects can be mitigated. Why, for example, I went to bed calm and hopeful and had the best night's sleep I'd had in weeks directly after a whirlwind of unexpected activity and two very traumatic procedures, yet two nights later after an uneventful day I cried myself to sleep feeling alone, scared and vulnerable. The thing that I've found is that although there are certain aspects about being in hospital that cannot be changed, the experience can be utterly transformed by the attitudes of those around.

It is all down to kindness.

My first few days in hospital were saved by the kindness of three individuals in particular, though others helped too (not to mention my army of Peggies who rallied round like nothing I have seen!). A nurse, a cleaner and a student nurse were the three people that made those first few days bearable when everything was foreign and overwhelming. They showed me that patient care has little to do with your job title or pay grade and everything to do with your nature and approach to interactions. Gentleness, patience, attention to details and the unspoken. Acceptance and compassion. Time, in a hectic environment.

As the days passed, I witnessed both sides of this countless times both for myself and the others on the ward. I wanted to cry for people when they were misunderstood or not given the time of day. Each time you could see the misery when faced with unsympathetic "care". The decline in capacity to try making progress, to get needs met, to be positive. The frustration with themselves at not being a good enough patient. The increase in resignation, acceptance of being in pain or discomfort or doing without the things they wanted or needed or their questions answered. I rejoiced inwardly when true care was shown. When patients and staff laughed and chatted. When dignity and independence were maintained, when needs were able to be expressed and treatments were positively engaged with.

My time here has brought home the discussions around mental wellbeing, particularly when caring for and working with people with complex and profound needs, that I introduced after Joanna Grace's Sensory Engagement for Mental Wellbeing training (I was sure I'd blogged about that but now can't find it!). Much as I have always been convinced of the paramount importance of promoting ways to support wellbeing when people have complex needs and require medical and personal care, I feel I have a new understanding through my recent lived experience. I am painfully aware that mine is just a tiny taste of what many others experience: I have still been independent in personal care and can largely access mainstream communication methods. But I now have a glimpse into the what it really feels like - the real internal effects of the complete vulnerability of being in hospital/being cared for and I hope never to forget some of the scariest experiences of my life.

What I hope in equal measure is to use this experience to the best of my ability as I become well, to champion ever more a true caring approach, to try and explain why it is just non-negotiable, and to try and lead by an ever-self-questioning example. I will share far and wide the stories of late night hot chocolate, of facilitating a terrified person to do something they thought impossible, of thoughtfulness, noticing, and just a spare second in a busy day. I will get better so that I can pass on the kindness I have received, because I know. I know what it can do.

This post is about YOU! (Kind of)

This bloggery is a wonderful and terrible thing. I write things and press the magic button and they disappear into the ether. At least that was the original plan, and I fool my brain into thinking that's still how it works so that I can carry on. But every now and then it's brought to my attention that the ether is not entirely unoccupied. This horrifies me when it brings awareness of the betrayal of the safety of "my world" (I've finally finished the book on "Exposure Anxiety" so hopefully a soon-to-come post will enlighten you on this one), but I have also come to recognise some beautiful little morsels of Good Things that come alongside. So I wanted to think about why I write this blog and to say to you readers in the words of Miranda,

I began writing mostly for myself. As I explained previously, for a number of years I was very private about the fact that I am autistic. But there were things I wished people knew about neurodiversity and its infinite stories. And there were things I wished I could tell people about me. One aspect of my social communication differences is that I communicate much better in writing than face to face conversation, particularly if the topic is personal and important to me. So I very often can't tell people things, even if I would like them to know. Writing also helps me to organise what is in my head, so I may not know what the thing is that I may or may not want to communicate! A double barrier to getting the message through.

So writing blog posts allowed me to

• organise my thoughts more clearly
• identify some of my feelings and opinions more clearly
• express things that I wanted people to know (in general or about me)

When you set off...

Of course my expression at that stage was simply that: expression. Because I couldn't own up to being its author, I couldn't actually give it an audience. That was mostly fine by me: I think at that stage knowing there was a possibility of it being read might have been enough to stop me writing it. We often move in small steps in life that take us gradually to places we didn't dare or want to imagine. Once there, we can find that they are adorned with unexpected delights.

This little blog of mine now has a small readership, and from time to time I do wonder who is reading it and what they make of it. Some I know - friends and family who comment or chat to me about things I've posted, but beyond that it very much is still the ether, and I'm happy with that.

...you never know quite where
you'll find yourself!

Then I receive a message asking if I'll help inform some training on supporting neurodiversity in the workplace. A fellow dancer I see for a week every year or two brings it up on the first day that I see her and says she enjoys reading it. A friend from church greets me by the name Peggy and gives an encouraging comment. There's a second of alarm as I realise that these people, some relative strangers, others I've known for years but never discussed my difficulties and differences and labels with, know all this information about me that I think of as very private.

But I have concluded that what follows that second of alarm is most definitely worth it. Connectedness, being understood, being accepted as well as known, finding out that I've helped somebody in a personal or professional relationship - I've made a valuable contribution to somebody and they cared enough to tell me. These things can be hard to come by when you can't just talk to people, so they are treasured when they come.

So now this little bloggy isn't just a help for my brain; it has a lovely little life of its own and brings me back gifts from time to time. It's now a treat to discover which people have been lurking in the shadows of the blogosphere and finding my words, and to hear what those words have done in the places they have travelled through.

So thank you very much please and thank you to you, sir, for doing the reading and the thinking.

And get in touch, lurkers! I did it to somebody else a while ago, who was equally surprised to find I'd been reading her blog avidly!

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 :)

I won't wear make-up on Thursday: Body Intelligence gleaned from staying in bed!

OK, it's true I didn't wear make-up on any of the other Thursday either, but that is a reference for the Cool Kids who both wear make-up and listen to "actual music". Maybe I should have picked the more accurate line from the song "I will do nothing on Thursday: sit alone and be."

That is exactly what I have done. Well, I went and let the chickens out about lunch time to get rid of the anxiety that I hadn't done that or fed the guinea pigs. Brought the Piggle Peggies in for moral support and returned to the land of bed. At 3.30pm I even progressed from a prone, under-several-duvets state to seated with just one merely draped over myself.

I had done that thing that's meant to be sensible (although admittedly it may come slightly out of desperation too) where you communicate that you need something before utter disaster hits. The trouble I have discovered though, is that then if you get the thing Brian tells you in no uncertain terms that this is a catastrophe. You shouldn't have the thing: no-one else has the thing - why are you any more entitled to the thing than anyone else? Accommodating the thing has cost other people: you are an even worse person for needing, and taking, the thing. You didn't really need it anyway, you just quite fancied it - you could, and should, have managed without it; after all, nothing terrible happened to show that you needed the thing, so you must just be greedy and lazy. Now that you've had the thing, what if you actually need it in the future? You've already had it so you'll have to manage without next time. You can't carry on like this, "needing" things left, right and centre, you need to pull your socks up and get on with life like everyone else.

Contrary to appearances, I haven't just come here for a whinge about the Brian. In my nothing-ness and the approach to it I stumbled on a couple of observations.

The sensory may be more involved than I think.

A perfectly adequate set of resources for
the day

This is funny, because I've just started reading a book by Penny Greenland of JABADAO* about (well, partly about) how body intelligence (the is a whole chapter just introducing the concept of what this is) can be used in the mind together with intellectual intelligence to approach everyday issues and problems.

In the lead-up to realising I needed some space I first noticed my brain responses: getting irritable, decreased patience, increased behaviours and unhelpful thoughts. Then as things progressed over the next day or two and I became more stressed rather than less, on the final day I was much more aware of sensory responses. The piercing vehicle-reversing-beep I had to block from my ears, a scratchy label in my clothing, appreciation of darkness. The all-pervading discomfort caused by a foreign and distasteful (to me) scent on my fleece, that became so unbearable I had to give up my fleece. The proprioceptive/touch dysregulation of not wearing my fleece when I'm already stressed. The overheating of my body from the down bodywarmer I luckily had in my car that I fetched at lunch time to solve the proprioceptive problem.

To be very brief, something like this...

I don't know whether it's that the warning signs come in this order - the lower-level stress is signified by more cerebral warnings and the sensory warnings signify that things are escalating - or that my awareness works in this order: the more significant my stress levels, the more I function on a sensory level and the cognitive loses priority. I suppose processing capacity is decreased when under stress so this would make sense. Now that I think about it, there's a lot of theory that explains this, but you can go and Google that - I can't be bothered to talk about it now (but if you ask I'll go and find it!). Yesterday I also began exchanging words quite bizarrely. I explained to my fellow class Peggy that I was going to cut the Duplo lengthways to make it fit. I meant Velcro. Just picked the wrong word. I used the word purple instead of person to the same colleague about five minutes previous to this. My thoughts were jumbled and I wasn't properly paying attention to myself or anyone else.

I came across a quote in the JABADAO book today: "This woman's focus has changed so thoroughly from intellect to body that stringing words together has become difficult. She has swapped an intellectual way of being, for a body way" (page 33). I laughed aloud when I read it because it seemed so apt. The lady in question had made this transition intentionally, but I had perhaps begun to make it unconsciously, which is why the kind of work described in the book is so important. Becoming aware of and utilising this body intelligence can help integrate the systems and employ them in a helpful way.

As I was sitting alone and being today, I attempted to be mindfully aware of my frustration, my guilt, my fear and anxiety (two distinct states/thoughts for me) allowing them to be, while listening to what my body needed and permitting it to have that. It meant I stayed in bed for a really long time. It's now 4.30 and I'm still there in fact. I never stay in bed for that long. I sometimes have days where I stay a pretty long time, but eventually my body tells me it's time to do something else. I can feel the time approaching, but it hasn't come yet, and I'm trying to ignore my own judgmental feelings and my feelings about how it would appear to others and not rush my body into doing what it's not ready for.

As I knuckled down and did nothing I found some of the reasons why here was the right place today. They were mostly sensory. It's not that I'm in a dark place mentally and can't "summon the motivation" to get out of bed (don't get me started on people making those kinds of judgments). I am not psychologically bound to being here. Neither am I intensely physically exhausted and thus unable to get up, although I am tired. This time, my body has told me that this is the right place for it to get what it needs right now.

Not laziness. Important work to enable
future functioning. Down with shame.

What it needs is a lot of touch/proprioceptive input. When layered for weight, duvets and blankets give my body the perfect way to receive input to my body's entire touch receptor; its largest single organ, the skin. A friend once told me of a discovery that the more of her that was touching something, the more comfortable and relaxed she felt. I am exactly the same, and the only thing I have found that beats a good pile of duvets is swimming. When I move in water (not necessarily in a conventional "swimming" way, but in the way my body wants to), it moves past every cell of my skin. I find it exceptionally helpful and regulating, and now that I've written that, I've realised that was my first sensory clue to my dysregulation. I noticed the immediate calming effect of being in the hydro pool the day before the other sensory clues and commented on it at the time.

The other reason I needed to be in bed was to regulate via the olfactory sense. I would certainly never have intentionally sought this method of helping myself, but sometimes my body knows more than my brain (body intelligence...). Now I know that this will disgust some of you, but try and let go of your social conditioning for a minute and bear with me. Our own smells and those of our loved ones are some of the earliest developmental experiences for our olfactory sense, and thus easily processed and calming (credit Joanna Grace). I became aware part way through the day that I was frequently seeking this input, putting my fingers to my nose, and even smelling my own shoulders and arms (weird, I know!). When I leant over the other side of the bed I smelt Mr Peggy's smell, and after stroking the Piggy Peggies my left hand smelt of them. All of these were contributing to the gradual regulation of my body.

The final piece of body intelligence I gleaned also came from Hopping Home Backwards. There are little exercises throughout the chapters which aim to help the reader understand better by experiencing what is being discussed. All I could notice was that every time I tried one - they are all about listening to the body and what it wants - all mine wanted was stillness. It didn't lead me into any kind of movement unless there was a part of my body that wasn't touching something and then it asked to curl up smaller or snuggle into a bit of duvet. For me this was surprising. Mine is a body that likes to move. It needs to move. It needs to stretch a lot and it is useless at sitting still. But all it would do today was be still.

And I'm pretty sure it was right. I was right when I communicated that I needed some space. Whatever the Brian said afterwards, and it is shouting loudly as I write this, I did the right thing. And it was right to do the right thing. My brain can sometimes lie to me, but my body knows and tells me the truth. You've done enough. Sit alone and be.

*Hopping Home Backwards, Greenland 2000.

Doesn't play well with others

Been writing a lot, not about me. Clues as to the kind of week I've had. I felt a little bit hypocritical posting wonderful posts about wonderful things when the internal life has in all honesty not had an enormously pretty week. Half term hasn't sat right, I've been surviving instead of replenishing as I'm supposed to in the holidays, and I'm scared witless of what will happen when I go back to work because of that. Poor Mr Peggy has barely seen me, and when he has I haven't really been there. He doesn't know about any of this because this is the only way I can manage to tell him. Sorry, and thank you, and I love you.

Anyway... enough of putting you honestly in the picture! The Brian told me to write about being misread, and the dangers of performing too well.

Indeed, I have required every coping method under the sun, good
and bad, and as my doctor commented, a few more besides!!

It's a well-known fact that people with autism (including people who speak and people with Asperger's) have difficulties with communication. Stereotypically, verbal people with ASC tend to take things literally, don't always get jokes, misread social situations etc etc. But how often do we talk about what happens the other way round? What about expressive communication?

When people speak and have honed their copying and performing skills sufficiently to generally pass as "neurotypical", it is likely that others will forget or be unaware that they may have difficulties with expressive communication. If you're "social" enough to survive conversations and social situations then you're one of the crowd and judged by their social rules.

That can be gratifying, but I discovered today it has its hidden dangers.

My doctor's surgery very usefully has an online service, which is great for people like me. I can book appointments without the dreaded speaking machine (well, if there are any... and not with nurses or Urgent Care), I can check when my appointments are (hello last minute - or any other time -anxiety!) and I can read my notes on there too (useful for all sorts of reasons).

I read my notes after an appointment and realised I had come across as "guarded", "closed" and elements of my demeanour were noted. Now, I don't have a problem with these observations because the are entirely accurate in a way, and I imagine are clinically useful, particularly in the context of how I may present at different times.

The thing is, although they would conjure up a very accurate image of my outward appearance, the assumption about my inner state, specifically my intentions, is misleading. My motivation (albeit subconscious) in avoiding eye contact and curling my legs up is to increase my communicative capacity. Despite appearing guarded and closed, by regulating my sensory and emotional world in these ways (eye contact is stressful and exposing at the best of times, and increased touch/proprioceptive input over more of my skin is calming) I am trying to con my body and brain into thinking they are safe and that it is OK access the important and very personal information and then to try and give that to somebody else.

The long pauses and short answers are testament to the difficulty I contend with to produce even the little information I am giving. They don't mean I don't want you to know. They mean it's even more important that you do know. They mean I know it's important and that's why it's more difficult for me to get it out. I need extra time, more clear and specific questions, understanding. (Although sometimes I might not be able to tell you because you've asked... that's a different matter and you'll probably receive exceptionally clear "I don't want to talk about this" vibes, even if I do want to talk about it but can't right now because you've just asked!)

So, the observation that I am needing to feel safe and I am not communicating is absolutely valid and a useful indicator of mental state, but it is easy to misinterpret these presentations as implying a wish not to communicate instead of the very real and painful need to communicate. I would hazard a guess that this doesn't just apply to me.

The thing that got me was that I wouldn't have known I came across that way unless I had read those notes, and it makes me sad to think that people might interpret my behaviour that way. Think of the potential impact of a lifetime of that kind of misunderstanding on someone's social life. And wellbeing. If I cross my arms it's because I need some more physical feedback, not because I don't like you or don't want to talk to you.

To dare to expose something real and important about oneself - a wish, a choice, a need, a feeling - is a terrifying, monumental task (when I finally finish the book I'm reading about 'Exposure Anxiety' I will write a big old post on it!). For some context, consider that my brain tells me that a blink of the eyelids or a pressing together of two fingers may even be an immoderate display of emotion; anything more could be an unforgivable betrayal of the insides. Please don't misinterpret my efforts to battle the anxiety brought on by even contemplating such a task as outing the ins.

So when you next see some communication expressed, question its intention rather than assuming what you would naturally infer. Use your knowledge of the person and their nature. You can try asking if you're not sure. We may or may not be able to answer. Maybe we'll write a blog post about it later.

Develop Your Sensory Lexiconary!

The second of my fabulous learning opportunities came in the form of Joanna Grace's Develop Your Sensory Lexiconary day.

It was long-anticipated and my appreciation was only increased by the external and internal barriers that threatened to get in the way right up to the last minute. (I won't digress here but thanks to nice people who are kind to me. You probably have no idea it was you who made that minute or hour or day manageable.)

As expected it was a captivating day, stuffed with knowledge, insight, inspiration and food for thought. Home time arrived and I felt like we'd only just started! I wish I could have brought everyone I know who works with sensory beings. (Sensory beings are people whose primary experience and understanding of the world is sensory, as opposed to linguistic beings who experience and interpret the world through language. Think about people with profound and multiple learning disabilities or complex autism, young babies and people with later stage dementia.) And then I'd have sent them on the Sensory Stories day and the Sensory Engagement for Mental Wellbeing day. I really must not sit and extol their wonders here. Suffice to say your understanding and practice WILL be transformed if you attend.

The day in full swing! Sensory delights galore!

I'm obviously not going to recount the whole course content, but in short, Jo takes her delegates on a journey through seven of the senses, exploring the development of each and ways to choose and use resources in an engaging and meaningful way. These sensory conversations, when facilitated effectively, support both cognition and mental wellbeing: I would assume this is a goal for anyone regularly interacting with sensory beings.

I fell asleep on the bus on the way home, but not a chance during the day: I was hooked! It's not just listening (although Jo is a particularly engaging speaker) - you are constantly exploring resources, experimenting, seeing snippets of theory in action through video, being thrown tantalising tidbits of research and rabbit trails there isn't time to explore, and learning through doing and through questions and comments from other delegates (it is also a great way to discover who else is in your area and what they are doing and to steal little bits of expertise or stash away contacts for later!).

Why, thank you for asking,
yes we did retro-nasally taste Skittles!

I've been on two of Jo Grace's training days before, but I still learnt plenty and came away inspired and full of ponderings on people I spend a lot of my time with. I didn't know that biting something really hard floods the body with calm chemicals (or why). I didn't know that detail is as exciting to the brain as high contrast black and white images in early development. I didn't know that rap might be more "beneficial" than Mozart for a baby. I hadn't thought about intentionally supporting the development of subconscious senses (eg. proprioception/vestibulation) with conscious ones: pairing a clear fixed visual experience (or very localised sound source or directional stream of air) with the vestibular activity to give the brain a double whammy of easily processed input to help make sense of the world.* And you can't afford to miss the empirically evidenced effects of swearing (including different types of swearing and why they have the effects they do).

You'll recognise this one
if you've heard
me on JABADAO!

I was reminded of what we get from early developmental experiences: they are the most easily processed - what we have had most exposure to and most practice interpreting. They are like junk TV for the mind: it can just lie back, not really engage and mindlessly (as it were) enjoy/survive the moment. It's why many of us sleep in those early snapshots of developmental movement, why pink light is calming,* why a heartbeat rhythm soothes and why heavy-based scents are relaxing (they are closest to our own natural smells which we are socially conditioned to declare repulsive).

Ever since, new thoughts keep coming to mind about the people I spend my days with. My friend who needs lots of squeezes and constant proprioceptive/touch input - would it be even more calming in a heartbeat rhythm? Another friend who needs to explore everything by mouth - I can support his development by providing resources he can hold at the same time to aid his mental mapping skills to develop through his hands as well. I could go on, but I won't!

When you are taken through all the jobs your brain is doing when looking at a red ball being moved slowly from left to right (and the difference between that and a static jiggling red ball!) it is a wonder anybody learns to understand the world visually, and really highlights the monumental effort and athleticism that people approach the world with every single day. Linguistic beings take so very much for granted.

We also miss out on so much. It's well-understood that it is beneficial to spend time with people of different demographics, and here is a case in point. Experiences created with sensory beings in mind benefit everybody (I won't ramble on about why - it may well be self-explanatory, but do ask if you're not sure and I will be happy to ramble!). Sensory conversations are fun, interesting, challenging and engaging just as any other conversation: they are time spent getting to know somebody, seeing the world from their perspective, hanging out with somebody, being present.

With all its flaws and quirks, I marvelled at the human brain today.

Just a couple of current favourite sensory experiences for me ;)

Credit for all those little gems to Joanna Grace. Find her on Facebook, Twitter and LinkedIn as well as her website The Sensory Projects to find out more (she can probably point you to the right research sources, which I am less likely to be able to!) 

* And as an interesting incidental link to my previous post, Jabadao already do this when they tour with the Tig: the dancers wear black, white and red and the lighting is pink. I told you their work is based in research, and it's not just the movement stuff!

JABADAO: A Playful World

I love learning. I just find it interesting discovering new things - sometimes the "whyness" of them is fascinating, or their implications; sometimes it's just pleasing to know a thing I didn't know before. Bees spit at their hive-mates in hot weather (maybe that's what our resident loft-bees have been up to - they seem to be thriving and exceptionally noisy this year!). There was one train journey with 42 different fares from London to Birmingham. In 2016 trips on the London Underground took on average 4 times longer for wheelchair users.

But I digress. I had some lovely opportunities for learning last week and I know no better way to process than by writing a blog post, so here you go!

A Playful World Blog

Running a session for colleagues is a great excuse to reignite my Jabadao-brain and I spent a good couple of hours lost to the world, mostly in avid consumption of this delicious blog from cover to cover (as it were).

A Playful World is a mother's account of her baby daughter's developmental movement from birth to about 18 months, complete with the games they found together, gorgeous clips of video, excerpts from theory/research and insights from observation and participation. I couldn't leave it until I'd finished the lot (oops - another late night!).

If you have any interest in developmental movement and Developmental Movement Play I couldn't recommend a visit more, and if you have an hour and a half you can get through it all! It's a great demonstration of all the things we touch on when I try and introduce people to Developmental Movement Play but don't have the time or the experience or the developmentally-appropriate bodies to hand.

How do you climb if your body can't?

It uses a typically developing body which may or may not show some differences to bodies you and I may be playing with, but the principles of the play - finding games, enjoying what is happening right now, having awareness of what might be trying to happen and conversing simply as two bodies - remain the same. As you will have heard me say if you've ever been unfortunate enough to hear me on the topic of DMP, all bodies are programmed with the same desires and map for movement, from the least mobile to the most. It may be that you spend months, years or a lifetime playing in the early snapshots of developmental movement or it may be that you hurtle through (which is not a goal and can bring challenges of its own), but all bodies long to have meaningful conversation where they are, and to run and to climb.

You would never guess how much is
learnt through tummy play!

The development of our movement supports the development of our senses and cognition: not just proprioception and vestibulation, but vision and touch which are the stepping stones to writing and reading, and interoception (vital if you're ever going to toilet train or look after yourself independently, feed and water yourself at the appropriate times). Our movement development from day one to at least 12 years of age also teaches us science through experimentation and exploration, and inquistiveness. It teaches us perseverance, achievement found through playful struggle and so much more. When joined by helpful, informed, playful adults it brings us the foundations of interaction, conversation, negotiation, shared attention and the joy of sharing space, sharing achievements and sharing life.

A Playful World explores the joys and the challenges of providing for Developmental Movement Play and shows beautifully the theory in practice with ideas, inspiration and a really cute baby!

An excerpt from the first entry:

One of the things I have noticed in these early few days is how much Ruby has enjoyed opportunities to be hanging upside down, and on her tummy right from day one. 

Hanging forward over a helpful adults hand or knee is her position of choice... 

A little theory…

...On a physical level, movement that seeks to establish stability is the most basic human movement and the cornerstone for our physical development. The development of stability takes place in direct relationship with the force of gravity- the gentle and constant force that helps to build bone density and muscle strength.

Physical Development

The organisation and reproduction of movement doesn’t stem, as you might expect from the motor cortex part of the brain. Our movements are directed from the sensory cortex. When we first decide to perform an action we first recall a ‘sensory engram’ created through past repetitions of that particular movement. We remember (in sensation) what it felt like, then our motor systems reproduce the remembered sequence of sensation laid down in that engram… We need to pay equal attention to sensation as well as movement, therefore, if we want to work in depth and detail with the body as a source of learning- enabling our bodies to dance with internal sensation is every bit as important as learning to read and write… we must practice tuning into sensation as a route to using our body thinking processes.

Hopping Home Backwards

Why is this interesting to me…Holding Ruby in this way, and playing with her upside down, from day one, I was often met with ‘watch her little neck’, ‘You’ll make her sick’, ‘I wouldn’t do that, I’d drop them.’

Even though I knew ‘the theory’, I was doing the same as every new parent and muddling through, finding the ways to be with Ruby. Following her lead, and ignoring the voices around me led us to being upside down- so that is where we wallowed.

Most parents will naturally rock babies and children- which is working with the same sensations as being upside down & playing with gravity. Some babies will always indulge in going further than you might think.
When I think about it she has been upside down for the last few months so being up-right all the time must seem strange, why wouldn’t she be happy there!

The second post, Games played in the first week, gives some really early developmental play ideas, and the third, So much more than just feeding or sleeping, is a reminder of what is happening and trying to happen in the really early snapshots of development as well as a snippet of theory and some of the challenges of living in our culture. I will restrain myself from summarising the rest of the blog post by post, but do go and explore: it's a veritable treasure trove!

And for thoughts about how this translates with bodies that move differently, visit the Jabadao website or search for Jabadao on YouTube for a couple more videos of The Tig...

Sensory Self Care Saturdays

On Saturdays I roll out all the coping strategies.  Every Saturday is a self-care Saturday. They're not necessarily the same every week, but some of the current favourites (I won't list the negative ones...) are walks in the countryside, cuddles with the Piggy Peggies and painting by numbers. Today as you can tell by the blogging activity, writing has been one, as has seeing a friend.

I've written before about how sensory experiences can help with my wellbeing (here is a good place to start) and because one of the aspects about my autism that I get asked about most frequently is sensory needs, I thought I'd give a window on one of my coping tools of today.

I had a shower.

Sounds simple, but let me see if I can give you an idea of how I had a shower and what the shower did for me.

Before I had my shower I stayed in bed. Usually my self-care Saturday begins with a lie-in, followed by pilates - just the ticket (combined with Friday night yoga!) to getting back in line with myself. This was a hard week though, and Friday was difficult and included bathroom floor time for lunch, yippee. I have learnt that it is both survivable and at times beneficial to follow my body's hints that departure from routine would be wise. I cancelled pilates and stayed in bed. For ages. The weight of the duvet(s) gives wonderful proprioceptive feedback to the whole body and savouring the experience nourished me.

When I had finished duvet-ing I took the luxury of leaving my contact lenses out and showering with the light on.* I'm very short-sighted so this transforms my sensory experience: my eyes focus on the water cascading immediately before them, glistening in the light - sparklewater! (see also. sun on the sea or a river...)

I had no time limit on my shower; no deadline for leaving the house, no stressful event to prepare for later. I closed my eyes and tipped my head back, focusing on the sensation as the water woke my scalp and face. Nice and warm - bed temperature eases the transition on the body... calm. Tappy tappy touch dancing on my skin.

I have my phone set to play "My Mix" on YouTube - no stress of deciding what playlist I want to listen to, no decision making, but music that I like because it's made from my playlists.

I turn around to join the sparklewater again and become absorbed in the way the shadows of the water drops play on the white bathtub if I shake my hands and move my fingers.

Eventually I move on to wash my hair and myself, with familiar scents and an unchanging routine. When I start to overheat I know I've been there long enough and I share a last few moments with the sparklewater before I say goodbye. My shower has a five-second delay on its "stop" button - this Godsend makes the transition more bearable. And I know I can come again soon. I am so very grateful that I am privileged enough to be able to access this form of self care: physically, culturally, financially.

Photos just don't compare.
Go and try it for yourself if you can.

*It's funny, because it's there every day, the sparklewater, but it's a special treat to see it. My contacts give me so much (I cannot focus beyond about 20cm without them and I have much better vision than with glasses, not to mention they are so much simpler, especially in my job!) but in entering the world of the distance-seers I lose the beauty of the morning sparklewater. On weekdays I also shower with the light off because dimmer light is more calming for me and our bathroom fan makes an unholy racket too, and I need to retain all the calmness I can on schooldays!