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. 

Doesn't play well with others

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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."