"You did it"

So I did it. I completed half a term with no major work crises, no going home, no sick days. Cue congratulations and jubilation. "You're doing so well", "I'm so proud of you!"

The trouble with outwardly succeeding... functioning... completing something... is that it seems to blind others to the cost of the achievement. Once there is a visible outcome all people can see is this "winning against all the odds" . They want to buoy you up with the positivity, the "...but you did it!"s, the "well done"s and pass you on as inspiration for others who are struggling.

Positivity and celebration are valuable and important in general life, in recovery and in maintaining wellbeing, but the response above misses something vital. What was the cost of the success? Losing months worth of ground in recovery behaviour. Responding to children in unconstructive ways (what are all the potential knock-on effects of this?). Losing months worth of ground in the brain. Being absent from my home life and Mr Peggy who deserves so much more. Tipping the balance of believing in recovery back the other way. Reinforcing the belief of self and others that pushing through works. (When you use my achievement as "encouragement" for someone else struggling it may well do the opposite: make them feel useless and hopeless because they see no way to such achievements, invalidated and alone because you do not accept their current state, and worthless because the implication is that people are worth more when they achieve.)

IT DOESN'T. It is not worth it. I don't want to have to fight the recovery fight again now: I only just fought it.

Yes, I "did it" - I turned up every day and did my job more or less, but what have we really achieved? Reinforcement of every negative coping strategy that makes it even harder to crawl out of the hole that I tried so hard not to fall down again. So please don't congratulate me. Don't assume because it happened that I'm fine and better. Ask me how a long difficult term affected me. Tell me you're there no matter how many times I fall. Stay with me when I can't get up right now. Remind me that it doesn't have to be square one and that it's never too late or too early for change.

If you really want to support me ask instead of assuming, regardless of the outward appearance. But only if you're OK with whatever the answer is. When I tell you I'm sinking grab my hand just so I know you're there, and don't let go.

"I can see xxx is happening. Can you tell me about it?"
"X has happened that I thought would be difficult for you. How did it affect you?"
"I noticed xxx. What can I do to help?"

Then even if I don't have an answer at the time, or say I'm fine, follow up in a few days when I've had time to process. Even do this two or three times: it may well take that much for me to know you really mean it and for me to think it out and to feel safe enough to let you in.

It might look like winning, but I'm living the only way I know how to: winning might not always be the best. Everybody needs a helping hand and that's OK.

10 Deep Breaths for 10 Days

Day 1 (Monday): I follow Hania Therapies on Facebook as I visit Amy Manancourt for massage and yoga therapy. As I checked my page at lunch time Amy was presenting a challenge to her followers: take 10 deep breaths for yourself each day for ten days and see what happens. It seemed do-able and potentially interesting, so I thought I'd give it a go. I tend to think I'm pretty good now at listening to myself and allowing myself time because I have had to learn to do this in order to keep functioning. So I thought it would be interesting to see whether a little practice like this would change anything much or not. I took my 10 breaths when I usually have a mindful moment at the end of my lunch break and they encouraged me to linger just a little longer appreciating the stillness and my surroundings (though not much longer or I'd be late!).

Day 2 (Tuesday): As I took my 10 deep breaths on Tuesday I was reminded of when I first visited Amy for treatment a year ago. At the end of each yoga posture she would have me take three deep breaths in with a sighing breath out. Although I never mentioned it, I really struggled with this - hearing my own breath was incredibly uncomfortable. It felt painfully vulnerable, as though my most intimate self were laid bare (eye contact can also feel like this). Luckily I trust her a lot! I felt exposed and most definitely not invisible (A desire to be invisible can drive a lot of behaviour in my life. Currently reading a fascinating book on 'Exposure Anxiety' and autism - future blog post in several months when I've finished it...); troubled by my own existence and taking up of space and air. I also had difficulty in those days when yoga required stretching arms out when lying down. I think I felt unprotected, exposed and vulnerable again, and had to work very hard mentally to physically open up form my 'safe' closed posture.

I still experience these difficulties now when I am having a tricky day with Brian, and I have noticed that as soon as the difficult thoughts and feelings are present in my body it begins almost to shrink: to curl in on itself, becoming tense and making itself as small and invisible as possible. My 10 deep breaths helped me realise how far I have come from that first meeting a year ago though: I now notice this feeling in myself because it is not present all the time.

Day 3 (Wednesday):  On Wednesday it was very difficult to allow myself my 10 breaths. I think I got to about three. The day was challenging, the Brian was loud, and I didn't feel like I should be using the air I was breathing. I would be a better person, or have more respect for myself if I could do without that air. This sounds as though I have a terrible opinion of myself and non-existent self-worth, which isn't actually the case, so maybe it's not the best way to express how I sometimes feel, but I can't quite find any words that come closer. Perhaps it's more that fact that concentrating on the breath reminds me that I exist. I am here in this world, taking up space and oxygen. If I breathe, there is undeniably a "me". And on difficult days I find this a troubling concept to swallow. I'd like to be able to choose my visibility or invisibility. [edit: just read a quote from Exposure Anxiety - The Invisible Cage by Donna Williams: "so someone can actually trigger their own Exposure Anxiety simply because they become such an intense audience to themselves." Interesting.]

Day 4 (Thursday): On Thursday I still struggled, but managed to take my 10 deep breaths. Amy suggested on Thursday that we consider what we are grateful for when we find that moment where we give ourselves permission to slow down, listen and simply breathe. I was (and am!) grateful for birdsong, for sunshine and for hope.

Day 5 (Friday): I can't actually remember my 10 breaths on Friday. I thought when I started that I should make notes as I went along, but somehow didn't. I'm working on accepting this imperfection and going with what is. I usually take my 10 deep breaths time lying on my bench on the moor at lunch time, and the day was going OK at that point so I think it was fairly uneventful. The day later became stressful and I used some less constructive coping methods accidentally. I learn from this that I can never become complacent about how I am coping and that I must continue thoughtfully and intentionally looking after myself. I also continue practising acceptance of the me that is right now, with all of its different facets.

Day 6 (Saturday): I didn't get round to doing my 10 deep breaths. It was a busy day, and full of fun and excitement but also brought anxiety and some triggers taking me back to a time in the past where I was very much in the grips of my mental health disorder (particularly in the light of Friday). I stayed on the straight and narrow but my brain was busy! I could have made time for my breaths but each time I had an opportunity I forgot. Which is an insight in itself, really. However, I'm not going to berate myself, feel guilty or let the incompleteness or imperfection of my 10 days spoil things; rather, I notice, accept, and observe what this says about where I am right now.

Day 7 (Sunday): My normal routine has been rather out of the window this week because of Saturday's activities and preparations for the through the week. I always find it a bit difficult to balance weekends when I don't have a normal Saturday and today arrived with the relief of knowing my routine will be back to normal this week tempered by anxiety that I could not quite pin to any specific source. It threatened to overtake me as I searched for the balance between doing and not doing, preparing for the week (physically and mentally) and allowing myself to be however I needed to be. I couldn't settle to anything or find peace. I was pestered by thoughts of negative coping strategies and overwhelmed by all the things I needed to accomplish (including relaxing!).

I had set YouTube to "My Mix" (to create a playlist from music on my playlists or similar) as I wanted to listen to something but couldn't decide what. After a short while I was stopped in my tracks by a piece of music that brings an instant change in my internal state. It was the first piece of music playing when I walked into the JABADAO! training over a year ago, which was a day that changed my life (for more on this and also on Amy Manancourt see this previous post) . That piece has a lot of power for me and it reminded me instantly of my 10 deep breaths. I put down what I was doing, laid on the floor and took my 10 breaths. The breaths led me to my mat and half an hour of yin yoga. I won't claim it solved everything, but I was then able to go and eat something and from there to do a few jobs and then sit down and snuggle with my guinea pigs for a long and settled chill out. The anxiety didn't leave me completely: I'm still sitting with it now, but I got through the day without engaging in too many negatives, managing a few small achievements and having time to hopefully mean I can face the week ahead. I'm trying to be kind to myself about the things I might not get done, or the timescale I might be working to.

Day 8 (Monday): Well I somehow completed the day without disgracing myself in any dramatic way. I used coping strategies that probably aren't helpful in the long run, but they work to get me through what needs to be done. I don't have any other option right now. Despite not being able to allow myself some other things, I did defy the Brian enough to have my 10 deep breaths. Although I experienced a definite resistance to letting go at all, the breaths did help to relax my body and mind a little, for which I was grateful in the context of the day: a moment of slight relief is maybe all I would have been able to accept. On days like that, an attempt to grant myself anything is likely to be rejected as unacceptable because it is too much, too overpowering. Just a little at a time, so as to fool the Brian into not noticing.

Day 9 (Tuesday): Today was similar. I threw out my last lifeline early in the morning, which was caught by a couple of wonderful work Peggies perfectly undramatically and just about got me through a day which was even more challenging than expected. My thought while taking my 10 breaths was to consider carrying the practice throughout the days. I breathe very slowly so ten at a time takes quite a while, but I thought it could help when things are difficult to remember I might be able to stop and take just one deep breath, or even not to stop, but at least to take that breath for myself in the midst of whatever is happening, giving myself space to refocus. Of course I was then too busy the rest of the day to employ this and it only came to mind again once I reached my bed at night!

Day 10 (Wednesday): Reading back yesterday's writing is amusing as I recognise that taking deep breaths is hardly a new idea for somebody that has lived with anxiety for a while! It's the prescribed-to-all first line of defence and doesn't generally cut the mustard for me. But having committed to this practice for these ten days has perhaps brought back its value to me, and allowed me to find what a relaxing deep breath is for me, rather than one that is full of stress. It still isn't going to solve everything for me, but there are times when it could be the ingredient in my coping concoction that just gets me through a particular moment. And of course I know very well that taking a proper time out purely to ground/focus/meditate/yoga/pray/whichever precise emphasis or name you choose to take at a given moment does proportionally more to bring (or perhaps is even exponentially proportionate to) a physical and mental change of state. Can I restructure my days to facilitate more of this??

So I haven't had a perfectly-formed beautiful journey of discovery to share with you from my 10 Deep Breaths for 10 Days, but that is not what it was about - that is just what my perfectionist Brian would like to turn it into. Instead you have an imperfect but real record of my explorations and thoughts, ups and downs. I'm not even going to say successes and failures - just a story of what is. Down with judgment is what I say!

What to do about undesired behaviour

Lengthy post warning!

I had a question this week about how to support somebody who displays undesired behaviour and I think the thoughts we pulled out could be of interest to a wider audience.

I was going to write about the particular behaviour in this post, but as the principles we talked about apply to a wide range of "undesired behaviours" it seems wiser to begin the discussion in a more general way to allow those with a range of difficulties to relate.

Most people are no stranger to unwanted behaviour. Every parent or carer will be more than well-acquainted with the problem, and others won't have to look far to find it. "Attention-seeking" is an umbrella label often attributed to a whole host of issues including emotional dysregulation (tantrums, autistic meltdowns, anxiety or panic attacks, withdrawal - including what can be interpreted as "the silent treatment" in adults) and self-harming behaviours (including not only self-injury but eating disorder behaviours, drug and alcohol misuse, trichotillomania, dermatillomania, and many more), but this term is incredibly misleading and usually inaccurate. Such behaviours are indeed attention-needing, but many go to great lengths to conceal undesired behaviours, particularly self-harming ones.

So, when supporting somebody who lives with these kinds of difficulties, how do we best go forward?

The vital point to remember is that every behaviour is performing (or attempting to perform) a function. Nobody engages in these kinds of behaviours because they find them fun. Hard as it may be to believe, the toddler mid-tantrum is genuinely having a harder time than you. The person having an anxiety attack at a really awkward to is not only dealing with their anxiety attack but the pain of knowing that they are causing an inconvenience. The person who hurts themselves is devastated when you find out, because of the pain it will cause you (to add to the shame they already feel for resorting to such a method to try and deal with their unbearable inner pain).

Here are some possible functions of "undesired behaviour".

Expressing distress - making internal pain visible can be an acknowledgment for oneself that the pain is real and needs to be dealt with, or it can simply be an overflowing of the inner distress when somebody feels so dysregulated that they cannot help themselves (think of people in the Bible tearing their clothes with grief).
Trying to cope - self-harm can be a way of avoiding even more extreme solutions such as suicide, and it can actually make people feel better, releasing endorphins and thus relieving their distress or anxiety momentarily.
Communicating distress - often people try really hard to hide their "negative behaviour" but sometimes such behaviour can also be an attempt to show that things are not OK, or somebody might secretly wish that somebody would find out and help.
Fulfilling a sensory need - some behaviours perform a sensory function that either soothes, alleviates boredom or entertains. Sometimes they aid concentration or form part of a routine. Behaviours performing this function can become very habitual and compulsive and be very difficult to move away from.
Responding to overload - meltdowns and shutdowns and some self-injurious behaviour are often triggered directly by sensory or emotional overload, especially in people with autism or mental health problems, as the body's way of protecting itself from perceived threat.
Fulfilling a compulsion, addiction or belief - eg. "I will get fat if I eat", "If I don't thoroughly check that the car is safe I might cause an accident and kill somebody." The unwanted behaviour is attempting to alleviate the anxiety by avoiding the anticipated outcome.

People end up using behaviours repeatedly because they work. They serve a purpose. Even if to an outsider they appear negative, for that person at that time, they are helping in some way, and if we wish to change the behaviour, we need to address the underlying purpose.

Before looking at potential options to help with these categories of unwanted behaviour, it also important to examine why, as well as how, we intend to go about this if we wish for success. For whom is the behaviour undesired? If the person using the behaviour is distressed because of it then you have good grounds for working towards change. If it is actually harming others or putting the user's life in danger, then again it needs to be addressed for obvious reasons, but if the behaviour is not actually harming anybody (in body or mind) does it really need to change or do we need to reconsider our response? Why does the behaviour make us uncomfortable?

Unusual...yes. Wrong...?

Does "less socially acceptable" always equal "problem"?

Also worth considering here is whether the person wants to change (linked to "does the behaviour cause the person using it distress or not?"). Sometimes they need to change (if they are putting a life at risk), but if they are not ready for this (eg. somebody in the depths of anorexia) it will be very difficult until the brainscape has sufficiently recovered to allow a desire for change. Once there is a desire for change there also arises the question of motivation to change. Early in therapy I found this a really difficult concept. Of course I wanted to get better, but I genuinely didn't believe it was possible. I couldn't imagine how it was possible that things could ever actually be different for me. Because of this I could not muster the motivation to do the things I had to do to get better, because it didn't seem worth it. They went against everything I believed at the time, and felt like the stupidest thing I could be doing.

Now I had an unfair advantage here, because I had heard of people previously being rejected for mental health treatment because they were "not ready for change" so although I didn't lie - I was motivated and knew I couldn't stay where I was - I did big up my motivation in order to get my treatment. And once I was in treatment and my therapist figured out that although high my motivation was not enough to allow me to sustain the changes I had to make, we did some work on "motivational enhancement therapy." It makes me angry that this is so unfair, that because I had that heads up I got the treatment I needed but the other person didn't (although my condition was also different so I don't know how it works for theirs), but it's just a point really, that for people to make the kinds of changes involved in leaving some kinds of behaviours behind, the incentive required is unimaginable. You telling them to change is just not going to cut the mustard. If they don't want to they are unlikely to, and even if they want to, if they thought they could, they already would have done it.

So, once we've ascertained that we are going for change, how do we go about it? What kinds of solutions can counter these effective coping strategies that have developed to deal with really complex and difficult issues? My ideas are obviously not exhaustive or based on any research or therapy programme, and simply those that spring to mind. Please feel free to add, argue or otherwise discuss and share thoughts.

Expressing distress - look for alternative outlets as well as working on awareness of how to deal with things before they become overwhelming. Journalling, martial arts, drawing, talking to others, using sensory tools are just some ideas but different things will work for everybody. Be creative! Accept the person as they are, and that right now they need to do this to make life bearable. Sit with them in the dark if that's what is needed to keep them from being alone in the dark. Let them know your feelings about them haven't changed. It's OK with you for them not to be OK. Work with the person on identifying things in their life that increase and decrease stress and how these can be balanced better.
Trying to cope - as above, really. Other ideas for "green activities" (ones that contribute to wellbeing) could include being outside, being with animals, music, reading, swimming, meditating and anything else that helps!
Communicating distress - work on acceptance, making yourself a safe, compassionate and non-judgmental outlet where the person feels able to let out the big, scary stuff. Or if you are not the right person for that, help them find somebody that is. Support with communication skills can be helpful here, potentially including scaffolding strategies such as non-verbal communciation methods like wristbands or symbols, or pre-learnt phrases that can be used as required. Work on self-advocacy, understanding and accepting one's own needs and having a sense of self-worth will all help here.
Fulfilling a sensory need - here it's good to really get practical and imaginative and look for something that will mimic the sensory effects of the behaviour as closely as possible without being harmful. Chewing a chew toy (try different ones, or a rubber on the end of a pencil for an adult, or anything else that works), fidget cubes with buttons and switches, putty/blue-tack/playdoh/slime, popping bubblewrap (with fingers or a pin...), the list really is indefinite. If you can't find something that mimics the effect, play around with finding something different but equally engaging, that uses the same body parts (eg. keeping fingers busy, rubbing a soft or smooth fabric over skin instead of doing anything else to it. Spreading PVA glue, letting it dry then peeling it off is a good one we all remember if we were in primary school before mobile phones...). Perhaps create a box of tools that can be chosen from.
Responding to overload - try and work out triggers for overload and avoid these where possible. Look for strategies to help when overload is approaching or takes over - soothe boxes, exit routes, grounding techniques can help, amongst others, but sometimes all that can be done is to make the area safe and wait until the storm has passed. Then ensure the person has someone who can care for them because they will be wrung out physically and emotionally, even (or especially) if they have caused harm to others or environment.
Fulfilling a compulsion, addiction or belief - this is one that is probably best addressed through medical care by professionals trained to work with these conditions. Online CBT may be a help to some people, but these issues are very complex to deal with effectively.



I know this is in no way comprehensive or applicable to everybody, but it's at least some thoughts and ideas to play with.

For myself, the only approaches that have resulted in a positive change in my behaviour have been from people I feel safe with, who are not shocked by what they discover, who do not judge, who understand or listen to try and understand, who accept me as I am at that moment including my behaviour: those who show true compassion.

This doesn't mean that they don't care and don't want to see a change in me, but it means that I don't have to change before I can be with them. They can be in the dark place with me when I can't get out of it. If a person is chained up in a dark cellar, no amount of standing at the top shouting encouragement or telling them to come out is going to solve the problem: they are still in a dark place on their own. Sometimes people need somebody to come into the dark place, be with them there, nurse their wounds, help them build up strength and then work with them when they are able to start working on the chains.

Acceptance and a lack of pressure to change, combined with support to understand myself and grow, to put in place positive coping strategies and alternative behaviours are the routes that have led me to a decrease in "undesired behaviour."

"I find you a calm person to be around"

I thought I'd share with you all something my Brian has been playing with that rather amused me. It was funny because it happened during the week about which I wrote my previous post.

Several different people commented to me about how I am a calm influence and a calm person, and relaxing to be with. This brought an inward chuckle as I happened to have been dealing with an increase in anxiety, disordered thoughts and feeling overwhelmed. I know the comments were based on longer-term relationships than just the last week, but it did make me think because at least one of them was about one day in particular, and a day when I was feeling anxiety and was doubtful of my ability to cope!

Now I must admit that all of these comments came from colleagues, and therefore in a place where I do tend to be performing and making an effort to be at my most functional and presentable. But bear in mind that these are all also people who have seen me at my worst, when anxiety is playing its game well, and they still see me over-all as a person who spreads calm.

I was really pleased to hear that this is one way that people experience me though. One thing we can never do is perceive ourselves as others do. We spend a lot of time thinking or worrying about what others think of us, and our flaws and shortcomings can seem like our main characteristics when we look through our own eyes or imagine what others see, but my discovery this week is that we really can never know.

This makes it especially important to reflect back to people the things that we appreciate about them. It was perspective-changing and warm to know that other people can genuinely get something positive from being with me, and that they're not just saying it because I asked or because they know I benefit from positive feedback: the context was each time not about me but about somebody else's needs that I could provide for. So let people know how they benefit you!

Aside from the warm fuzzies though, I was a bit bemused that calm is a characteristic that apparently exudes from me. I am often troubled by anxiety. It invades my dreams, I have to live by lists to try and keep the zooming thoughts tethered in some way, I really struggle in social situations or when I am out of my comfort zone or put on the spot.

I came to the conclusion that there are a couple of contributing factors to my apparently calm aura, most of which can be linked to my autism (entertainingly, as that is also the source of much of my anxiety!):

Processing time

Until recently, I never considered that I may have any processing issues because my language skills have always been fairly advanced. I am very grateful for this as it allows me to understand and take part in the world, but am finding now that it can mask delays in my understanding, interpretation or processing of situations. I find it very difficult to answer questions on the spot if they require more than a simple factual response (frequently my brain is working on such questions for hours or days afterwards, when I may be able to form an answer that actually reflects my true thoughts or feelings on a matter). Sometimes it is only once a conversation or situation has moved on that I realise what somebody actually meant if they were speaking figuratively. 

The emotions of a situation do not tend to hit me as it happens (sometimes they don't hit at all, sometimes I don't recognise them and sometimes they hit at a random unrelated time and it takes me ages to figure out what they are about). I am learning to stop and think through when something emotive has happened in order to identify my emotions and allow myself to feel them. This probably sounds a bit strange and unnecessary (why bother feeling things, especially painful things, if they don't ask to be felt?) but it seems that even if I don't consciously feel them my emotions are still there in my body and brain, contributing to my general stress levels, but in an even worse way because they are unidentified and not dealt with so they don't disappear. Intentionally getting them out to examine them keeps the old Brian tidy and helps to reduce overload and destructive coping mechanisms.

After all that waffle, what this means in the "exuding calm" situation is that I may not have really processed what has happened/is happening and it is unlikely that I have felt any reactive emotions regarding it. I can therefore respond in a calm and functional manner, dealing with the facts, logistics and problem solving (providing I have the imagination to see the solution, which is another matter entirely...).

Source of anxiety

Although I deal with plenty of anxiety, the sources that tend to trigger this for me are likely different from those that trigger the majority of people. Other people's problems do not stress me out (I care about them, but don't tend to feel anxiety about them). Children spitting in my face or biting or scratching me doesn't stress me out. The things that cause me anxiety are thinking I have done something wrong or displeased somebody, any perceived failing on my part, injustice or people being treated badly, and sometimes changes to routines or expectation. 

Of course other people share these sources of anxiety, but the things that don't cause me anxiety mean that in situations that many find highly emotive such as day-to-day experiences in my work, I can respond with less emotion and anxiety. I don't feel bound by the social "norms" that dictate that yawning is rude because it says you are bored (it is a natural bodily reflex...), farting in public somehow means you are revolting (again, a bodily reflex), or not looking into somebody's eyes means you aren't listening or don't respect them (or maybe you're just trying to concentrate on what they're saying...). If a child spits at me it is similar. I don't experience that personal offence that most people naturally feel (again, instinctively - they can think it through with the same logic as mine but for some reason my brain skips the emotive/anxiety response here) so I am straight on to "How uncomfortable must this child be feeling in order that they must respond like this. How can I make it better?"

It doesn't always work like this, and especially when I am tired or stressed there are things that provoke that reaction in me, but I find it really useful that often the reason I appear calm is because I genuinely am not bothered by what has happened.

Difference in expressive emotion

This one is pretty simple. With autism, people don't always express emotions in the same way as non-autistic people. So I might be anxious or stressed but not look like I am to somebody who doesn't know me well enough to know how that shows itself in me.

Obviously when it gets to shutdown stage it's generally pretty readable that something is not right, but with my anxiety, from what people say, if you don't know me well you may not know there's anything wrong until it's very very wrong (And until recently and still sometimes now, I also may not know! And am even less likely to be able to tell you.).

So I appear calm more often than I actually am calm, which probably helps with people feeling relaxed around me. We all feel more relaxed around someone who appears relaxed, right?!

Intentional masking

And in case not feeling emotive or anxious or not appearing to be even if I am feeling it doesn't account for my calmness entirely, we have to add the fact that I do still intentionally mask sometimes. This was how I was able to take part in the world with a largely convincing performance of "normality" for so many years before discovering I was autistic, so it is a natural thing for me to do at times. I do it to maintain my credibility in a professional context and also in social contexts. If I want to be treated like everybody else I have to act like everybody else and I am glad that I have the skills to have this choice available to me. There are people in whose company I mask much less, if at all, and there are environments in which I am largely putting on a performance in order to participate. Positive or negative, that's how it has always worked for me.

How exhaustion and stress affect autistic "symptoms"

Having had a bit of a manic week (with another one to come), I have been forced to observe the effects of being overtired both physically and mentally on how my autism presents.

I have often noticed, and it is hardly surprising that in case, life isn't already hard enough when circumstances are difficult, our brains and bodies seem to think it's a great idea to join the party and make it even harder.

This is clearly not just an issue for autistic people as it is natural to find our coping resources depleted when we do not have time or energy to engage in those things that normally keep us well in body and mind. We all notice that it is harder to maintain an even keel emotionally, to make good decisions, to look after ourselves and others when we are tired or stretched, but I wanted to talk about the specific effects it has on my autistic traits, in case that is new or of interest for anyone.

So without further ado - differences I have noticed this week:

Sound sensitivity
Being around a lot of noisy people, or a particular sound that normally I can cope with I have found overwhelming this week. When this happens I can't see a solution/escape and feel trapped which makes me even more panicky and overwhelmed. Being aware of this helps as I can sometimes rationalise and stop to look for a solution. Otherwise, sometimes one is provided by somebody who has picked up on my situation (a lovely person did that once this week!).

Lack of social filtering
I become more abrupt and less filtered in what I say. I forget to be socially acceptable and just say things as I see them. This can result in people seeing me as rude (understandably, as I probably am being rude!), weird or snappy, which is sad for me.

Tactile sensitivity
Labels in clothes that I normally don't mind begin to bother me! I also seek more regulatory tactile sensations such as my blanket, BFRBs (body-focused repetitive behaviours) etc.

Increased intolerance for change/error
Fairly self-explanatory. Change, the unexpected and people doing things "wrong". If I can buy some extra processing time this can sometimes be managed, otherwise the upheaval of trying to readjust my brain to accommodate the anomaly can lead to overload or use of negative coping mechanisms.

Increased intolerance for failure
Any perceived error on my part can also easily become overwhelming. The thoughts can easily lead to overload or use of negative coping mechanisms, feeding into my mental health disorder and trying to bring me back into destructive cycles of thought and behaviour if I can't engage in some CFT (compassion-focused therapy) techniques or counter the thoughts with something believable but less unkind.

Decrease in emotional regulation
Again quite obvious. It's much easier for me to become dysregulated by any little thing that may happen, and harder for me to bring myself back to functionality. I'm much more likely to have shutdowns or need extra time to use soothing methods and keep myself calm.

Decrease in ability to communicate
Even if I can cognitively rationalise what is happening, I am much less able to convey that to somebody else. It's like my brain shuts down that possibility so that even if I want to, I can't just tell somebody that I am having a problem and what that problem is. It's as if that is just too much, too big or important, or it would dissolve me or something. It's rather difficult to explain, actually.

Decreased capacity for being with people
People are just too exhausting! Because of the energy it takes to be with people, to think of things to say, to make sure they're acceptable things, to try and make sure I do all the right things in a conversation (answer questions with just the right amount of details, ask questions, but not the exact same ones, use the right level of formality of language, don't do anything stupid with your body, finish the interaction correctly, etc etc etc), when I am tired or my brain is full, I just don't have the capacity for much of this.

Bad sleep
It's very rare for me to sleep badly. I am the one who will sleep through anything, always struggles to wake up in the morning, steals all the duvet and kicks/generally bashes about Mr Peggy each night! But this week I was plagued by anxiety dreams, and a strange brand of them too, not just the usual ones but ones set into a nice life-like situation from a few years ago to make it particularly hard-hitting and the effects longer-lasting into the day (my usual anxiety dreams are about waves, tides or being late for things. Oh, and sometimes teeth falling out!). I also unaccountably woke up several times during the night and one morning even woke up at 5.30 wide awake. This is unheard of in the Peggy household (for me anyway!). And of course doesn't help the cycle of exhaustion.

Processing time
When the stress and exhaustion ramp up or last longer than a few days I also see a noticeable increase in processing time and brain speed. This can range from taking a long time to find words (just everyday ones like "handle" this week!) to taking things more literally than usual or not seeing the meaning of what somebody has said to me. Often it only clicks several hours after a conversation that I completely misunderstood what somebody was getting at! When it's really bad it even affects written communication if things are not spelled out completely explicitly.

There are probably other things as well, but just some quick thoughts, and an apology to all those who have suffered from my various deficits this week! It is frustrating when these kinds of problems come into play because I am normally relatively good at presenting a rough basic level of "socially acceptable" (and when I'm not it's usually for things that are "weird" rather than negative, like carrying a blanket with me or lying on the floor rather than being rude), so people are not used to making allowances for my social communication difficulties and just see rudeness/withdrawal/strange over-reactions. Hopefully the weekend will help, and by the time next week is over I can begin to get back to normality!

Having a "me"

I've been wanting to write this post for a while, but I'm not entirely certain of what I want to say, so please bear with me!

It's a post about being a "me": existing as a person or specific entity present in the world of other specific entities. This is something that most people probably take for granted most of the time, but a truth that I have often struggled to accept, or done my best to ignore, consciously or otherwise.

Even as a child I could not bear being conspicuous. Reading aloud at school was terrifying even though I was an advanced reader, being picked on to answer a question (because I NEVER volunteered) was my worst nightmare, having my music practice observed (just the presence of another person in the room, or even the house) made me angry and fearful and even the acknowledgment of my having completed some action or made some choice made me at the least uncomfortable. I sometimes find it intrusive when people use my name. When I'm really stressed out and can't have the control or invisibility I need, I have recently realised I just disappear. My body is there, doing what has to be done, but I'm not really in it - I have relinquished all choice, feeling, control, and thereby, "me", because to try and maintain a part of it or be present while lacking those things is too painful.

I always knew I was different from other people and that other people often knew this too, and being different is generally experienced as being wrong. I learnt to fit in well enough to avoid being a complete social outcast, but for many years I was very much clinging on to the perimeter of inclusion with people who were hardly the embodiment of "accepted" themselves. My goal in life was to go unnoticed.

All this is hardly news to me, and I am fairly sure that it has been a conscious goal through childhood and adulthood. When I received my diagnosis of autism I finally had a "reason" for why I was different and as I had grown older I had found a small number of friends who I truly fit in with. I had the longed-for acceptance and belonging and an explanation of why it had always been so difficult.

How wonderful to go unseen

Yet I retained this need to be invisible. As I worked through therapy recently I was aware that this was one of the functions of my mental health disorder. It was driven by a desire to be entirely insignificant, unnoticeable and to the outside world non-existent. That way you can't cause any problems, you can't be at fault or fail, and you don't hurt. Of course this is nonsense, and I did all of those things a thousand times more because of my condition, but those were the beguiling promises it made me.

Through therapy I have been trying to entertain the idea of a "me" being allowed to exist. Complete with potential for pain for others and myself and inevitable imperfection. I often find it difficult even to write or speak in the first person (even as this is written!), but I am gradually beginning to tolerate the existence of my emotions and to accept what I do or don't do, whether it is what I was aiming for or not. And then to show compassion to that "me" that has been allowed to exist. (It turns out my psychologist wasn't lying when she suggested that accepting things I don't like about myself might help them to gradually be needed less. Counterintuitive propaganda I thought, but there is definitely something in the whole acceptance, compassion, nurturing thing. I hate it!)

My battle with this idea really struck me after I read a post on social media over the New Year period. It stated that "Your wellbeing should be your number one priority. Nothing else is more important." I turned this thought around and around in my head and couldn't make sense of it. Something was wrong with it: it didn't seem to add up. I couldn't work out if it was supposed to be true or not, so I consulted Mr Peggy. He seemed to think that ultimately it probably is true. I'm still not sure (discussion welcome!), but it really made me aware that I still have a strong resistance to considering such a high value on my wellbeing even though I have changed a lot.

Then I began reading a book on "Exposure Anxiety" and my goodness, it resonates in places (I've only got to about page 30 of 300-and-something!). It was mentioned in the afterword of Donna Williams' Somebody Somewhere (second of two autobiographical accounts of Williams' life with autism and her journey from "her world" into "the world") and sounded interesting, so I popped it on my Christmas list and have begun to read avidly.

We disappear at any hint of discovery

Williams defines Exposure Anxiety as "an involuntary social-emotional self-protection response that is increasingly understood as a crippling condition affecting a high proportion of people on the autism spectrum." "Exposure anxiety makes it difficult to dare 'expressive volume' in a directly-confrontational (self-in-relation-to-other) world." "Exposure anxiety is about feeling your own existence too close up, too in your own face." (Williams, D. Exposure Anxiety, The Invisible Cage 2003, 10-11.) It produces aversion, diversion and retaliation responses and can present in many ways, just as each individual with autism is different, but can include difficulties in making decisions, fulfilling needs, being unable to perform under observation tasks which are well within an individual's skill set, speaking through other people's words (echolalia), being very controlled or controlling, and a myriad of other issues.

It has nothing to do with Exposure Therapy used to treat various mental illnesses, and I'm not sure that it is a widely-acknowledged "thing", but I think it can be a useful way of understanding aspects of behaviour in some autistic people, and the suggestions given for supporting such people certainly have merit. I see a large overlap with Pathological Demand Avoidance (PDA): though perhaps a difference in motivation, the mechanisms and presentation can be similar and helpful responses may look alike.

Perhaps I will write a separate post once I have finished the book, but I found it an interesting concept given my musings on why I find it so difficult to have a "me." (Which I still want to call a "you" because that is much less uncomfortable!)

So here's to "me." Me is a bit intermittent and only appears when she can face it, but we're seeing more of her as time goes on. Just don't tell her if you see her - she'll probably evaporate into thin air!

PS. You can probably tell her afterwards, when it's over because then it's less intense

New Year Post

For the past couple of weeks I have had three or four pending blog posts floating about in my head, logically resulting in no blog posts actually being written. So I have sat down to try and disentangle them and transform them into vaguely intelligible form!

I'll start with the expected "New Year - looking back - looking forward - with a touch of sickening sentimentality" one. And then I promise I'll get back to autism! Some interesting things I've been thinking about to try and figure out enough to condense into bloggery... anyway...

As I have taken stock of my adventures with Brian during 2018 I have been pleasantly surprised by a few realisations. When I compare my current state with the Peggy of a year or a year and a half ago, I am experiencing things I never believed I would actually experience, and neither was I sure that I wanted to. Some of these changes have even come about in the space of the week or two that this post has been swimming in my mind, forming and reforming itself to keep up with my changing perspective.

A year ago I was working 50% of my full time job, only going in for half days and finding that something of a struggle. When I returned to full time I battled anxiety attacks most days at least once and spent an awful lot of time crying in bathrooms. This month I took my first day off sick and since September have only had two incidents at work that required support from others. Not a perfect clean record, but progress I could not dare to imagine a year ago.

Progress in recovery for my specific mental health condition (which I don't discuss on this platform) has flourished lately. The months and months of hard graft working for what I didn't believe I wanted is finally beginning to pay off. Sometimes I genuinely believe that getting "better" actually is better. Just the last week or so I have felt the first breaths of freedom from my disorder. I have hope of a life beyond: the life that I had wished I dared to believe in but couldn't risk.

I am learning to treat myself with compassion. To accept the days where I need to go at my own pace, not shower until lunch time, wear joggers and snuggle down with my pets. To be kind to myself when I “fail” or fall short of my perfect ideal. To turn down the social occasion without (with less…) guilt if I need to, to do what I can not what I think I “should.” To ask for space or time or explanation when I need it.

I am learning to participate in my own life, to risk making choices or allowing my preferences to show. To let the feelings happen. It hurts a lot. I chicken out very often. I don’t like it. I prefer the safety of numbing and ignoring the feelings with destructive behaviour. But I know it doesn’t work. I’ve tried it. It’s not sustainable, and it’s not the life I want to live.

To get this far I have had many months of therapy from a psychologist who has helped me understand myself, my “what”s and “why”s and how to help myself, and most importantly, shown me that I can and am allowed to help myself. Her consistent voice is beginning to counter that of the ED and tip the balance of whom I believe.

This being the NHS, our sessions are about to come to an end, and I am trying to take the lessons I have learned and allow myself to feel the fear and sadness that this brings. In some ways, I’ve only just begun to really be able to talk about the things that matter, and with another couple of months I could be better enough that I would be equipped to keep going. This lady has heard things I doubt I will ever utter to another breathing being (as well as enabling me to utter things to other breathing beings that I thought I never would utter!), and I have invested much into allowing her to help me. She has helped me a lot. I won’t see her any more, and all that knowledge will go away with her and I will be left with the understanding and skills she has shared, to go forward my own way. It’s a lonely, scary and sad prospect. I hope I will do her proud. And I hope that if I don’t, I will forgive myself, pick myself up and keep on trying.


And the wonder of the thing is that in just the few days since I wrote the last four paragraphs, I have grown in hope, in confidence of the possibility of that hope being fulfilled, and in assurance that I am on the right path and I want to be on it. I honestly didn't see this coming, and especially coming so quickly. To have that inner reassurance (and the amazing support of some stalwart Peggies rooting for me all the way) and strength before I finish my therapy is a completely unexpected gift that I couldn't be more thankful for. I'm under no illusion that I won't come across setbacks and crushing doubts as Brian fights back, but I know that freedom can exist on the other side and it is worth fighting for.

So here's to a year of stubbornly practising self-acceptance and self-compassion, exploring and enjoying the experience of allowing the stalwarts of Team Peggy to support me, and seeing how many breaths of freedom I can breathe.