How To Tell When You're Overwhelmed (or at least, when I am...)

I was so overwhelmed that it took me half an hour to work out that that was why I didn't feel quite as all right as I had been doing.

Clues that I will use for reference in future:

• Thinking a million things at once, yet completely unable to answer even fairly simple questions or focus on one specific thought or problem
• Or it feeling like the Brian is completely empty
• Not able to work out how you feel: "I thought I was OK but now I feel like I might not be" but unable to elaborate. Eventually after rambling aloud intermittently for a while I concluded "Maybe the feeling is anxiety. Or maybe it's not, but I think it could be."
• A sense of impending Bad Things (eg. meltdowns/shutdowns/increased urges and likelihood of acting on them)
• I took off my hoody after realising it was very hot in the room, and shortly afterwards noticed I was really quite visually overwhelmed by my stripy T-shirt!
• After about half an hour I realised my body wanted to cry

Other clues I have noticed in the past include becoming irritable, becoming increasingly stressed by mess in the house, feeling more sensitive to noise, struggling to make decisions, finding change even more difficult than usual, wanting things "just so," not being able to let inaccuracies go (and not in a humorous way like usual), pacing or fiddling more than usual. The list could probably be infinite!

How do you notice signs of overwhelm?

Interestingly, I noticed that after I had the thought "my body wants to cry," my hands became still and my gaze focused on the shape of my Tangle. My thoughts stopped racing although I still found it hard to think. It was almost as though through my continued rambling I had reached the thing which was salient at that time and my mind and body came to rest, dwelling on that realisation.

Now crying is not something I enjoy, and the second half hour was spent whinging about how I didn't want to cry, along with a lot of sense from the person who is paid to talk sense to me. What might happen if I did or didn't cry, etc. etc..

In the end, once outside my body took me for a wander and I let it do its thing (for once I had no other considerations as Baby Peggy had another hour left with his Peggy-sitter). And now this afternoon I feel much better. The sense of impending Bad Things has gone, and so has the ?anxiety. I still feel exhausted but that's not surprising as I have had a busy and fairly stressful few days even though many of the things were positive and enjoyable (hence not realising that I was overwhelmed, though you'd think I'd know by now). And I've been awake since 6am of course! Time to try and go a bit gently and remind myself to watch the old occupational balance a bit. A new routine in two weeks will help, if I can construct it with the right balance.

Let's Get you Sitting on a Chair

or, Please Stop Inconveniencing People

Why on earth does it matter whether or not I sit on a chair?

The only conclusion I can come to is that it makes everybody else feel more comfortable (well, everybody who's boring and boxed up in the norms of society...). 

Is it an Autism?

Today the lovely people at the dentists' surgery got treated to a visit from my Oortizum (see Harry Thompson's page recently for this to make more sense - there's been a theme about identity-first language and everyone is joking about trying to find an Autism that is lurking somewhere, somehow existing outside of a person. Anyway, I digress.).

I was trying to process a change to my expectation by flapping gently with my Tangle and rocking back and forth before I left the surgery so I could let my brain accommodate the new information and work out what to do next. The receptionist asked if I was OK to come back next week. I replied "yes" and continued regulating. A few minutes later this loop repeated itself (in retrospect, she probably meant "please leave now" and also you are being strange and making me and the other patients uncomfortable, but this is not what she said). A few minutes later she repeated yet again and my brain went bang. "I keep telling you yes! It's fine, it's fine, it's all OK" as bits of my Tangle went flying all over the waiting room.

I managed to find a corner to crouch in to gather myself and let my brain and body do their thing. The poor bewildered lady went for backup. I had forgotten to wear my lanyard - a lesson I could probably learn from, although I'm not sure how much it would have helped in this situation!

I do not want your chair!

Thenceforth the main thing the noisy, fast-talking, incessant-questioning (but also very well-meaning) dentist seemed concerned about during my meltdown was that I sit on a chair. What?!

He didn't get the point that this wouldn't help from a) my ignoring the suggestion b) my getting more distressed as his insistence became stronger c) my shouting "no" at him and getting even more distressed (if you know me you will know I am NOT a shouty person!). 

Only once I had later had time to calm down (They got me a drink and left me alone and made a plan and told me what would happen. And brought me my bits of Tangle. So really they were very lovely!) and was able to talk again and he once more asked me to sit on a chair, gesturing to one across the room, did I ask permission to stay where I was (on the floor in the corner by a chair). He said I could stay in the corner but could I sit on the chair. I finally managed to express "it doesn't help to sit on a chair" and he gave it up as a bad job and agreed I could stay where I was.

Neither member of staff was unfriendly, they just didn't know what was happening and didn't know what to do. They were feeling a little desperate as I wasn't responding (again, to people who know me this would be a positive sign that I am working on recovery). I could tell this because the dentist urged me that I would have to answer his questions about how to proceed or he would have to send me away into the cold which he didn't want to do. He was at a loss as to what to do with this perplexing and unpredictable individual.

Ah look, the people are behaving

So perhaps my sitting on a chair would have made them feel better. I would look normal to them and anyone else coming in and they would feel they had helped me because normality was restored in their waiting room.

But the thing is, I wouldn't have been OK, or not as quickly. Crouching and being in a small space help me to feel safe, and this makes my recovery quicker and my stress levels after the incident lower, reducing the risk of further overwhelm a little.

For these people the sign that I was OK was sitting on a chair, and the sooner it happened the better. But for me that would not have been better. It would not have meant that I was feeling better. It would have meant that I was sitting on a chair. Less regulated than I could have been. But behaving normally. Putting on "normal" behaviour doesn't magically make the normal behaviour helpful to me, and it doesn't change the way my brain works. 

So next time you feel tempted to ask someone to change their behaviour, just check whom you are trying to benefit - do I want them to feel better or do I want them to make me feel better? If they're harming themselves or someone else then absolutely they may need to change. But maybe what they're doing is just what they need to be doing and maybe I could be OK with that. Maybe if I'm OK with it it will help others feel more comfortable around "unusual" behaviour, which will mean more people can be more themselves in more places more of the time. And when people know they can be accepted rather than making people scared or uncomfortable, they might just have a better life.

I searched for unusual behaviour on Google images and this was the result 😂

Also a note:

Double empathy problem. He didn't know that I knew they were trying to help. He kept reassuring me of this later on so it was obviously bothering him (and even rang the GP to get them to check on me - a whole other hilarious story!). I had no animosity towards them but they did not know this: my behaviour, distress and shouting were due to my brain not being able to deal with everything that it was being asked to, and nothing to do with my thoughts or feelings towards the people involved. I think perhaps people look at a meltdown or shutdown and interpret it as an emotion, and an emotion that is felt towards them because they are there or they were involved in the escalation of distress.

I rarely feel an actual emotion in these states: what I am feeling is overwhelm. Brain exploding because more is being asked of it than it can provide in that moment. It doesn't even have space for an emotion or an opinion on things - all that is in there is "too much" or "help" or "I can't cope" if I had to try and translate it into something.

I kept thanking them and apologising. I didn't know whether they knew I wasn't upset with them but just couldn't compute the change quickly enough. I didn't know if they knew that I knew they wanted to help.

So my communication was not understood by the people with me, and at times I did not understand theirs. An interaction between people of the same neurotype would likely have resulted in less confusion, a quicker de-escalation and less concern afterwards. 

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.

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."

Failure or Progress? When the autism monkey invades

This term has been going pretty well. Admittedly I've flagged a bit since week two, but we're on the home straight: 4 of 7 weeks completed and this is the last week of my evening commitments so I know the next two weeks will have more space. I've got much better at dealing with things, understanding and communicating my needs and so on and so forth, so have been quietly looking forward to completing a whole half term clean: last term (an 8-weeker) only held one drama and that was solved by the new and groundbreaking technique of going home and recovering (shocking I know!).

We had a great time!

Then came this week. I misjudged the weekend, having a wonderful day dancing on Saturday with friends, but instead of taking Sunday as a nothing day I took the utterly wild decision of doing an hour's shopping on my way home. This sacrificed my alone time and I had jobs to do in the evening once Mr Peggy was in. I should know better, but sometimes I get complacent and think it can't cost too much to do one extra Thing at the weekend (I generally limit to one Thing per weekend, and try to keep alternate weekends empty, having learnt that this allows me to function during the week). Turns out it does if you're me.

Monday nearly finished me off and I knew I wasn't on top form for supporting some of our little people, so I did a Thing (bold just to differentiate from the Things above!!). I found Mrs School and told her I thought I needed to call in sick for tomorrow. Mrs School has been on this whole parade with me and understood what a Thing it was and was very proud of me for my great achievement. I spent the rest of the week being congratulated by various people for this step in my development: rather humorous but very powerful. How grateful I am to be surrounded by supportive Peggies who are invested in wanting the best for me.

So, having done the Thing I returned on Wednesday, back to functioning level and feeling rather pleased that my bravery had paid off. Yes, I did mourn the loss of my clean half term and deal with some rude Brian behaviour but I came out on top and realised that I am still the winner because actually, I recognised the need and acted on it before ending up in disaster-land. I was able to reflect that a half-term with a day off and without crisis at work is a better achievement than a full half term having dragged myself along at 25%, lost progress on my mental health and needing the full holiday just to begin recovering from the term. Yay! Well done Peggy!

Enter FRIDAY MORNING.

SQUARE PEGGY is much as she has been every morning. She struggles to get out of bed and reflects that actually, she does pretty well day to day. When you consider that by the time she gets to work she has overcome several difficult transitions and sources of anxiety (Getting out of bed, getting out of the shower, leaving the pets, getting out of the car. Dealing with the anxiety of possibly being late, what might happen during the day, whether she's been an acceptable human being etc.), it's reasonable that she sometimes feels a bit wobbly. 

FRIDAY MORNING presents SQUARE PEGGY with an email announcing that the weekly Friday morning meeting (that she panicked for the whole journey she would be late for) is cancelled. She doesn't cope well without this meeting and if she misses it her Friday always feels uncomfortable. FRIDAY MORNING then informs SQUARE PEGGY that assembly is semi-cancelled and to take place in classrooms instead.

SQUARE PEGGY cries in a bathroom for 20 minutes to process this information, then gets herself to class. She plans to try and tell someone it isn't a good day but this is difficult to communicate. She tells herself that if she can get to lunch time she is doing hydrotherapy in the afternoon and that will be OK. She can do this.

As she goes to collect the children FRIDAY MORNING informs her that the pool is closed due to illness. Five minutes later a visitor she had forgotten was coming for the morning enters the room. She holds it together until the children are safe and settled in class and excuses herself to visit the bathroom, where she cries for another five minutes. 

Long story short; Friday is not spent at school either. I've not had the week I was expecting, and today hit me right out of the blue when I thought I was fine.

A tramp on my moor solves a lot!

I have come a long way though: I am now able to reflect with less self-criticism and take on others' comments about the difference between this week's wobbles and those in the past.

On Tuesday I called it before it got to the stage of turning into a crisis. Full on win.
Today I had no idea it was coming, but actually I overcame the first wave of Bad Stuff and didn't completely melt down even at the second. I was able to verbalise what the problem had been, I didn't have to wrap myself in my blanket and calm down for half an hour, I could accept that maybe it was sensible to go home. I went home even though Mr Peggy was there, and I told him I was coming. I looked after myself on the way home, because I'm learning that I am not an exception to the rest of the world: I make progress when I am safe and cared for, not when I am told off and criticised.

I still have an ideal of perfect functioning that I feel substandard for not meeting, and the outcome isn't what I was looking for, but neither is the outcome entirely negative. I am learning, I am progressing, and as that happens I may well move more towards my ideal of functioning. But if I don't, I will accept that. I have autism. This means some things are more difficult for me than they are for other people. It is sometimes hard to be me, but it is not wrong to be me.

Full up

I'm often trying to find ways to explain what it's like being me, or what it's like inside me when I look or behave a certain way on the outside.

I've been using one phrase recently that I think reflects it in a relatable way: I'm full up. It's what I might previously have described as feeling grumpy (and still do sometimes) or extra-autism-y, but it's not really just grumpiness, and it's one particular sub-set of being extra-autism-y. A particular type of Square Day.

Many of the children I work with are on the autistic spectrum and some colleagues and I were talking a while ago about how unsettling Christmas can be for the children because they need and are used to a low stimulus environment. Suddenly displays start going up all over the walls, their routines change to accommodate Christmas activities and all sorts of other things bombard them.

Which room makes you feel calmer?

The phrase "low-stimulus environment" suddenly made me think. I've never really thought of myself as someone that has big sensory issues and I certainly don't get sensory overload, though I do get social/emotional overload to varying extents at times. But I suddenly realised that when I get grumpy and feel irritable and don't want to answer questions or talk to people or look at them, it's because I'm already full up.

It's like there's no room inside for the extra words or sounds or touch or visual information. Any input seems like too much.  I don't get the thing where everything mashes together like you see in the YouTube simulations of sensory overload, and I would rarely have a meltdown or shutdown: I would control my response and reaction while with people, to present one that is outwardly reasonable although it may seem a bit irritated for no apparent reason.To any onlooker, it's probably a subtle, almost unnoticeable change, but inside I'm getting fuller and fuller and it takes more and more effort to keep the lid on. I suppose it's the background social/emotional/general stress/anxiety levels that are making me full up, but the result of that is that I can't tolerate any physical stimulus either.

In this situation I have no capacity to give out any of those things that are too much to receive either (e.g. answers, words, eye contact). This can be hard for those around me if they don't understand, as I just appear to be withdrawn, and I can't enter into conversation about it, probably just saying I'm fine. I'm getting better though - sometimes I can say I'm feeling grumpy and it's not their fault or something to that effect.

The best treatment is to leave me alone and completely minimise input of all varieties, which is fine for a day or a few hours, but it's really tricky when I go through a patch of feeling like that most of the time. It's not fair or realistic for people like Mr Peggy to stop giving me input or receiving from me. Any ideas how to manage times like this?

While I've been exploring this thread of thought and beginning to understand a bit better, I've also been thinking about how stress levels from different stimuli interact and cause different effects in me: the outcome or "symptom" of the stress often seems entirely unrelated to the cause of the stress, which I find quite confusing, but I think it works something like this:

Specific stress IN                                                                          Specific noticeable "symptoms" OUT

eg.          unexpected change                                                                                   eg.    avoiding eye contact

               waiting for something      ➘                                                                     ➚         irritable at questions 

  having to make decisions ➙ General stress/anxiety/arousal levels rising  ➙     not talking    

              being tired                        ➚                                                                       ➘       stimming but not       

         a horrible smell                                                                                                    touching others   

This accounts for how I can be experiencing the "symptoms" of being full up but not recognise a related or specific trigger. It's like there's a transformer inside, masking the nature of the input, so it can be a mystery to work out what's really going on!


So after that ramble, I think what I'm trying to say is that being full up is a comfortable way I've found to describe that mental state where the background level of stress/anxiety/stimulation from any one or a variety of causes has got to the point where even any extra sensory input makes me want to snap, and that the causes of this state may not be blindingly obvious or apparently related to the type of stress I am showing. It was a pretty groundbreaking realisation for me, but probably common sense to others! I'd be interested to hear whether others identify with this so do let me know by commenting or sending a message.

The D word

Anybody who knows me knows I have a problem with making decisions. It's far more long-standing than my diagnosis of AS and has left me with many rather embarrassing memories.

It tends to go something like this:
Somebody asks a very simple question, such as "do you want to go for first dinner break or second?", or "what do you want to do?", or I have to decide what food to buy in a cafe. Basically, anything where a decision is required on the spot, I don't know the answer and somebody is waiting for it.

Now, strangely, the less I mind about the answer, the harder this sort of situation is and the more stressed and anxious I get. Inside, I start to get worried as soon as the question is put or I see it coming. I start frantically searching for the 'right answer.' Here I am considering all the possible minute implications of each possible decision (to the routine of my day, to my companion's feelings, to my finances, to what is good for my body, to whether Great Aunt Gertrude would put her pink hat on if I chose option x, and whether that would have an impact on llamas in Peru etc etc). If I find a 'right answer' (some kind of deciding factor, eg. "I really fancy that toastie", or "that's the cheapest and I'm poor at the moment", or "the other person will want the big piece of cake so I'll take the small" or "that's got the highest specifications so is the best version") then everything is fine. The choice is made and we all carry on as if nothing had happened.

But if there is no deciding factor to find a 'right answer', we run into trouble. My heart starts pounding and my breathing gets faster, I go bright red (I assume by the feeling in my face anyway!), I start to get panicky and my eyes might dart around. At this point if there's no way out of the decision my eyes are prone to leak. This is very embarrassing in public when you are a grown up! I also might start tapping my fingers together quickly, or wiggling my toes, possibly before the crying stage. I will most likely be very quiet while this is going on. If we're lucky I might manage "I don't know." I'll be feeling very scared and vulnerable. The most recent couple of times I noticed I started flapping my hands and stepping my feet quickly on the spot, or sucking a finger. One time my mouth muscles did a weird thing I couldn't even stop when I tried.

As an aside, these last few have worried me a bit as normally I don't do things outwardly that would make people think there was something wrong, so I don't really know what's going on. I could just be becoming more aware of myself, but I'm reasonably sure I didn't used to do them or people wouldn't find it surprising that I have AS! Since changing jobs I seem to have been experiencing more 'AS symptoms' so I don't know if it's related to that, but I certainly hope it goes away. Any ideas welcomed! Just had a thought: perhaps this could be because in certain situations crying is not an option, like at work, so maybe the excess is coming out in a different way. Any thoughts?

I have observed a few factors which seem to compound the situation when it happens:

• time pressure
• the person reiterating that I need to decide rather than them
• thinking someone will not be happy with me if I don't make the decision (or if I make the wrong choice)
• when I'm hungry
• when I think a particular answer is expected or desired and I don't know what it is

If you think I'm in this situation and want to help, the very best thing you can probably do is to give me a hug (but only if you know me) and ask if I want you to decide. I'll probably nod. It doesn't matter what you choose: the reason I'm like this is because I don't know what I want. If I don't want you to choose, I might just need some time and space. If you can, take me somewhere quiet where we can sit down. I'll probably start to talk to you about it after a while. 

Anyway, until a week or two ago, I thought this was just me being bad at making decisions, but then I watched a documentary that got me thinking. It was the fourth episode on David Eagleman's series 'The Brain' and was titled 'How do I decide.' It looked at how both logic and emotion are needed to work together for decision making and showed a case of a lady with a brain injury where these links had been compromised and how she now finds even the simplest decisions incapacitating and can get emotional over it. I wondered if it could be at all related to AS, thinking about how the brain works differently with emotions and things, so had a look on the internet, and it looks like I'm certainly not the only one.

More to follow on what I found!

Sensory Issues

I have been asked to write about how I deal with sensory issues, and particularly with consideration that I don't disclose to most people.

I will start with a bit of a disclaimer. I consider myself very lucky that I don't have any really severe sensory issues that will send me into immediate meltdown or anything like that. Most of mine are preferences (albeit strong ones!) or things that will cause me distraction but not real distress or if they really are things I find it difficult to deal with they are mostly avoidable if I am aware.

Some examples of my sensory issues:

Textures/touch
I really hate ribbons, buttons and lace. I don't find them physically painful but rather disgusting and revolting. Usually it is possible to avoid touching. Some versions are worse than others: jeans buttons are OK (though not when I was little) but I would never wear a shirt. When they are loose that is the worse. It makes me shudder and flap a bit! The thought of pearly buttons that wobble on old lady cardigans makes me want to run a mile.

Thankfully I can choose my own clothes, being an adult, but looking after children I do occasionally run into button issues. Depending on the buttons sometimes I can grit my teeth and bear it. If not, I will send the child to someone else, explaining that I have a really weird thing about buttons and I just don't like them. People usually think it's a bit odd but accept it. Sometimes I explain it as being like when people hate cotton wool or fingernails on blackboards as a lot of the general population seem to have those particular issues.

Smells
Smells tend to register either very weakly or very strongly with me. I cannot stand the smell of air freshener: it makes me want to vomit. I'd rather smell the poo or whatever bad smell it is than air freshener. I deal with this by trying to explain to people I don't like it, but they usually spray anyway. I try and keep as far away as possible until the smell has dissipated. In fact I'm not too keen on most artificial scents - I have a perfume I can tolerate but I only wear it occasionally and it tends to bother me when I can smell it on my clothes afterwards. I can stand when Mr Peggy wears aftershave but I don't really like it and find it a bit distracting.

I also have an issue with laundry smells, probably because they are an artificial scent. I can tolerate one or two kinds but others distract me a lot: all I can think about when wearing clothes washed with them is that they smell wrong. It's generally fine on other people though and Mr Peggy is very understanding and lets me buy the washing powder I want even though I'm sure he thinks I'm a bit doolally. Occasionally children have really strong-smelling fabric conditioner and that makes me want to be sick too. To deal with this I just try and keep my distance!

Sounds
I don't like really loud noise (you won't catch me at any rock concerts!) and when I'm tired I find focusing in chaotic background noise difficult. To deal with these, most really loud noises are avoidable. If not I might cover my ears for a passing ambulance or similar brief and unexpected sound. People don't seem to find this too weird. In background noise I either tune out or try and watch people's lips to hear what they are saying, or just copy the body language of other people in the conversation.

Other than that I can get distracted by sounds, for example the humming of an item of technology or outside sound. I also find it very frustrating if a sound I know well is wrong: some music players can change the tempo of the music minutely, which also adjusts the pitch minutely. In a dance class this will drive me mad while nobody else has noticed, until I eventually tell the teacher, who says "I don't think we've changed it" then finds out it is wrong!

Sight
I don't really have any visual issues though I don't find it easy to deal with bright light and I have a tendency to get stuck in visual patterns, following them round and round when I notice them. I can also get distracted by anything unexpected or something happening outside the area I am supposed to be focussing on, eg. in training.

Taste
Again, not really a problem for me. There are foods I don't like but nothing that is an ASC-related sensory issue.


Solutions
Avoidance of the unwanted stimulus is my main solution. If this requires compliance from others often a brief "I know this is weird, but..." works.
Otherwise, I tend to get over the issue by indulging in sensory input that relaxes me. This varies according to setting, particular issue I want to get past and other variables but can include:

• rubbing my index finger on my thumbnails or thumbnails on my face around mouth
• letting my eyes lose focus and 'zoning out' for a while
• wearing either loose, comfortable clothes or something that gives even pressure eg. leotard and tights, leggings etc
• listening to music
• walking outside in the breeze/wind/near water
• having a shower or bath
• watching TV

These things are methods I have noticed that help me to descale from impending sensory overload. I probably have more issues with brain overload (emotional/communicative) than physical sensory issues so can do a post on that if required.

Hope that answers some questions. Please ask as always for more details or things I have not covered.