Tuesday, 18 July 2017

Is everyone a 'little bit autistic'?

I have many friends who are autistic.

And I often hear people who are not autistic trying to show acceptance, and relate to an autistic person by saying things like "Yes, I'm a bit autistic too, because I don't like change/don't like loud noises/stim/[insert appropriate phrase here] too" or use the phrase "everyone is a bit autistic" to try and be inclusive.

Now here's the thing.
Loud noises make my spine cringe. If words are too loud I really struggle to understand what they mean. It's like I'm having to use so much energy up to cope with the loudness I can't focus on the meaning.
I have poor proprioception (I don't know where my body is in space when I'm relaxed). Pressure helps me know. So does movement. So when tired and trying to concentrate I may rock, or sit on my hands or on my feet, or wrap things tightly round my hands or fidget, or stretch repeatedly, or one of lots of other things that gives my brain enough input to stop having to work out where my limbs are so it can focus its fatigue-limited resources on more interesting things. Essentially: I stim.

Surely that makes me a bit autistic?

Actually, for me, they're part of my hypermobility syndrome.

I find it totally understandable that some autistic people stim, and it's something I can relate to, but I'm not autistic.
I wear ear plugs when I go to concerts, but I'm not autistic.

I am not on the autistic spectrum.

Because (as I understand it) the autistic spectrum isn't a spectrum from 'a little bit autistic' to 'very autistic'.

Everyone on the autistic spectrum is autistic. They have a different way of processing things to me (who is not autistic). The 'spectrum' part relates to individual variations within the autistic neurology (although there's probably a better way to word it than that). They each display different traits from multiple parts of the spectrum as part of their autism. For example an autistic person might avoid eye contact, or might make so much eye contact that the non-autistic feels uncomfortable. They might seek a certain sensory input or they might actively try to avoid it - thus making a broad spectrum of traits within the diagnosis of autism. Some traits might be mild or severe  (like obsessive tendencies, or level of verbal communication) but that doesn't make someone more autistic or less autistic. The autistic way of processing is there. It is a part of who they are.

Does my insight into living with poor proprioception mean I know what it's like to be autistic?
No.

Because we don't experience life according to separate symptoms - we experience it as a whole being. For example, I experience poor proprioception alongside my ability to pick up non-verbal signals and hints easily. That means I don't know exactly what it is like to have poor proprioception and a limited ability to process non-verbal signals and hints.

Of course I use the insight from my poor proprioception to help me understand similar traits in autism, but I also need to step back and recognise that I'm not autistic so there will be differences.

"Everyone is a bit autistic" doesn't recognise the differences. It doesn't leave space for differences.

And if there's one thing my disabilities have taught me, it's that I can only flourish when I (and those around me) accept my differences - because then I can learn to live well with my differences. And you can't accept what you don't recognise exists.

So when I want to show that I relate to part of an autistic person's experiences I try to approach it from "That makes sense - I have [insert relevant trait] which has some similarities so what you say sounds familiar - but obviously it's not the same so there's a lot I don't understand."

Recognise the similarities and common ground, but also leave open, respectful, welcoming space for difference.

Because we aren't all a little bit autistic, but we are all human.

Thursday, 29 June 2017

Discovering the OneLeg stool

While representing the Hypermobility Syndromes Association at the Foothealth conference 2017, I was intrigued to discover the Oneleg stool.
It looks a bit like a mushroom, is designed to let you move easily when sat low down, and logic says it can't be very comfortable. However, as someone who does a lot better if I fidget when sat down I thought I'd give it a try.

Amazingly, this seat built to wobble feels really quite stable. It tilts - but in a controlled way. It's kinda hard to describe. It is much more comfortable to sit on than my wobble cushion - and gives a great core workout. It's also fine to sit still on. But instinct says "Fidget!! It's funner!" (it wasn't only me thinking this - the professionals who tried it seemed equally impressed. And equally keen to make the most of its capacity for movement while sitting still.). The one thing I couldn't do was slouch. I tried various slouches and every time I tried, my muscles kicked in and turned the slouch into a controlled movement - so it's a great deterrent against unwittingly flopping to end of range while sitting working (which is important for us who are hypermobile).

Seeing as the HMSA stand was next door to the OneLeg, I borrowed one and spent most of the morning sat on it. And when I did my lecture in the afternoon I sat on one instead of sitting in my wheelchair. It really helped with POTS management too - as I could keep my lower body moving enough to help improve circulation, without having to stand (which takes too much energy to be able to talk at the same time).

However, it should be noted that if you wiggle lots, then you really work your core muscles - and my hips and ankles too! So I'd strongly recommend building up how long you permit yourself to sit on it. It turned out that 4 hours on day one was a bit much - but I reckon if I bought one I would soon build my tolerance (and strength!).

My preferred height was the 48 inch. I'm quite long legged. I'd recommend trying various heights before buying if possible.

I now have this firmly at the top of my 'things to get' list - it will make a great office chair, and a way to strengthen my core. And when I have one, I'll be bringing it to events whenever I can - because being able to exercise while sitting really does help with managing my hypermobility syndrome and POTS.

(And no, I haven't been paid to write this. I just thought some of my readers might find it useful. I suspect it would also help with conditions like ADHD ;) )

Thursday, 1 June 2017

Communicating positively about hidden disabilities?!?

I often hear how important it is to be positive.

The thing is, that there are times we need the people we're with to be aware of symptoms - like fatigue, pain, dizziness, brain fog or any of the other multitude of things that can affect us in various ways from day to day.

It's not like we can start saying "Oh hurrah, I can't do that because my brain has turned to mush".

And yet....

I've seen peoples eyes glaze over when I talk about my current symptoms. I have even found myself unconsciously switching off when people have given me too much negative information. Which, given that I know what living with these symptoms...well, it was a bit unexpected!

It's as if the human brain has an automatic 'off switch' when too much stuff perceived as "negative" info is given resulting in none of then information I tried to share actually being taken on board - and a LOT of attempts to 'jolly me along'. "You can do this" "You need to be more positive" and the like. Which, of course, don't help - because they haven't actually taken into account the symptoms or limitations I've tried to tell them about!

So it looks like a 'catch 22'. Communicating about the symptoms is 'negative' and doesn't help. Not communicating about the symptoms means people get frustrated, have unrealistic expectations and can't understand why I can't do things.

Over time I've found a few ways to communicate in a more positive way - while still being very grounded and real.

For example:
"I am really fatigued. Struggling to concentrate. And I really can't sit still for long because of pain."
This is true. But it is all 'negative' information, and will probably fail in terms of creating understanding about my reality. I can't tell you the psychology of why, it's just something I've observed many, many times.

Here are some alternatives I've developed over time:

Option 1: Acknowledge the cause (it helps people build up an understanding of cause and effect - so over time they realise that busy today = symptomatic and quiet tomorrow, and puts the symptom into a wider context of 'doing' something - which also helps reduce the 'jollying you along' reaction.)
"I had a lovely day yesterday - got to hang out with some of my nieces in the morning. Now the fatigue and pain have hit, and I really can't concentrate for long. But it was worth it."

Option 2: Include coping strategies (it helps stop people panicking that you are just sitting there worrying about pain/symptoms all your life)
"I am really fatigued. Struggling to concentrate. And I really can't sit still for long because of pain - so I'm doing little tasks only, and lots of stretches, and using my heat pack - which helps."

Option 3: Recognise achievements based on what was challenging for you. (again, this helps people start to understand your normal.)
"I'm horribly fatigued and can't concentrate for long today, but I've managed to have a shower - so I'm really pleased about that."

Option 4: Include a 'can' alongside a 'can't'. (this helps avoid the 'encouraging' attempts that try and insist we do something we know we can't - or can't without unacceptable consequences - and has the added bonus that it's good practice for finding solutions and things we can do.)
"I can't sit for long - I'm in too much pain. But I can manage 5 minutes at a time, so I've been doing short tasks - and then changing position - I've achieved far more than I thought I would!" (I still can't believe how effective this position changing and regular moving has been for my pelvis/lower back pain).

And try to finish the update on a positive - which I've just realised I did in all these examples!

These don't create telepathy, or resolve every situation, but they have helped me become better understood by the people around me.

I hope that they can help you too.

Saturday, 27 May 2017

Disability: Appropriate offers of help

Friends and family often struggle to know when to offer help. Especially when it comes to variable and hidden aspects of disability - such as fatigue, pain, brain fog, or depression.

To me, as a person living with some of these symptoms, it feels obvious.

If I'm doing okay and managing a task (even if I'm doing it differently) then it's pretty obvious I don't need help. Being repeatedly offered help (or worse, given help without being asked) when I'm so clearly okay is SO frustrating! It takes away my enjoyment in being able to do it, it takes away my independence, and it makes me feel worthless. Plus I waste precious energy fighting off the offers of help instead of using it to do what I'm actually trying to do!

If I'm struggling, trying to push through nearly unbearable pain, unable to think straight, close to tears - then quite clearly an offer of help would be appropriate. And when people don't offer, it is like the seriously don't care that I'm struggling. Totally selfish. Like my needs are just not important at all.

But here's the thing I forget:

They are 'hidden' symptoms.

The foggly eyes and lightening strikes of pain so obvious in stickman are not visible in human. They are obvious to me. They might be so obvious it's hard to see anything else. But they are hidden from someone looking at me.

So if we translated those two scenarios into what it looks like to others instead of what it feels like for me, we get 2 scenarios that look nearly identical - a person preparing food. But in one the other person gets their head bitten off for offering help, and in the other they get their head bitten off for NOT offering help! This can result in the other person feeling like they always get it wrong, that their help isn't wanted, that they are worthless, that nothing they do is good enough - etc.  Is it any wonder that they can get frustrated and demoralized and stop offering help?

Realising this has helped me a lot. 

You see, remembering that it's not automatically visible makes me realise I need to communicate how I'm doing in order to get offers of help that are more appropriate - and acceptable.

Communication involves both people being on the same page - so having a conversation about the symptoms (and need for help) being variable and not obvious might be a good start. Or writing a 'dear loved one' letter or similar (see my earlier blog on types of communication)

And then find ways of communicating 'in the moment' where help is needed (or not) that work for both of you. Codewords can be very useful ("out of spoons" "Level 9 zombie" etc.). 

Personally I like things that 'Make the invisible, visible' - like flashcards or wristbands.



The important thing is that together you come up with a way for the 'foggly eyes' of stickmen to be accurately conveyed in Human - working together towards a future where offers of help are appropriate and constructive instead of a cause of friction and distress.

Thursday, 25 May 2017

What I learned from Deaf Awareness Week

I have a few friends on social media who are Deaf. Most of my understanding of being Deaf comes from them.

During Deaf awareness week, one of them posted a photo of this poster which he'd put in his office, next to a message saying come and talk to him.


(This poster isn't mine - I'm not sure where it originated from. I found it really helpful)

For 2 days he didn't get a single response. No-one came up and said hi.

No-one.

In an office, with lots of colleagues.

As a chatty, hearing person, I would have chatted to lots of people. For him not a single person came and said hi - despite it being deaf awareness week and there being a special invite!

No-one.

If that wasn't bad enough, other Deaf comment-ers were all totally un-surprised. Frustrated, but with a lot of 'well, that sounds normal'.

I knew that being Deaf in a world that relies a lot on sound must be isolating.

What I hadn't realised is that the isolation isn't so much caused by auditory issues, but by us hearing folk feeling too awkward or unsure to say hi, or too 'busy' to make the minor adjustments that would make chatting with them possible (see the poster above).

So I hearby promise, that should a chatting situation arise, and I discover that the other person is Deaf, I won't clam up and leave, but instead see if there are little adaptations I can make which will allow us to chat.

Don't worry, I'm not going to accost every deaf person I see and insist on patronising conversation when you are trying to do your shopping! But I will make the effort to remember the tips on the poster, and learn the skills to be able to chat, should it be a chatting situation.






Monday, 22 May 2017

A tip for wheeling in the rain.

It's a while since I've wheeled in pouring rain.

I quickly remembered that I do not like spending ages sat with wet knees. 

So, as I sprinted from parked car to station, rather smugly, I adapted my pushing posture. It worked! Dry knees......


..but within 2 minutes reality had seeped through.

I was sat in a puddle.

Take it from me: Wet knees is a lot nicer than.....the alternative!!

I'm now seriously considering investing in a wheelchair poncho of some sort.


Tuesday, 16 May 2017

The catch 22 of hidden disabilities/symptoms: Communication methods

It goes like this:

If I talk about my symptoms I am told I am being negative. That I need to stop focusing on my condition.

If I don't talk about my symptoms then people don't know how I am and therefore have unrealistic expectations - leading to frustration and misunderstandings at every turn.

It's a lose-lose situation.

However, there are various things that I've found have helped me get out of this loop.

One is to switch up the methods used. We are all familiar with the basic communication strategies, and for this blog I've categorised them as follows:

Written (formal)
Written (informal)
Analogies
Code words
Illustrations
Visual cues
Actions
Decision making

Written (formal)
Medical letters, journal articles, official websites.
These are good for communicating with health care professionals (HCPs) who are interested in knowing more detail. (Note: it's best get a conversation going and build a rapport with the HCP before asking whether they'd be interested in a journal article you think is relevant - if you walk in and hand it over it basically communicates "You don't know what you're doing and I think you're stupid" - even if that's not what you mean!)
Be cautious about using these resources with friends and family. They can give information overload, on websites information is general - so readers have no idea whether you are affected severely, mildly or somewhere in between and may end up even more confused. They are more effective with people who already have a good grounding but want to know more.
Emergency care plan
Having emergency info handy is very useful. Even if you are capable of speaking, trying to cover everything accurately in an emergency situation is very difficult, having it written down clearly makes it easier for everyone.
Medical alert cards:
These can be great, but make sure the print on them is big enough to be read easily, and that they only give useful information. for example, they don't need to say "affecting 1 in 2000 people" because it's not useful info. And unless they are only for medics, avoid ones in med-speak because many people will have trouble relating to them. Doctors can understand normal English too.
Our keyring cards are actually more informal in the way they are written, but have had excellent feedback from use in both medical and social situations.

Written informal
Personal letters explaining how you are affected. 
Adapting a 'dear loved one' template letter from a relevant charity (such as this one on the HMSA website http://hypermobility.org/a-letter-to-a-loved-one/) can be very helpful in creating a background level of understanding.
This means you can explain how you personally are affected in a way that gives the reader time to process the information at their own speed.

Flashcards can also be a great way of communicating a key point about how you are or what you need - a way to make an 'invisible' aspect of your condition 'visible'. Our experience is that they work best if they are light-hearted, not too stroppy, and get straight to the point. At Stickman Communications we love flashcards (or keyring cards as we call them) - we have over 150 designs so far covering everything from autism to diabetes, from tourettes to fatigue and pain, from go away, to please help me. But you can also create your own.

Analogies
One reason hidden symptoms like fatigue are so hard to communicate about is that unless you've experienced it, it's an alien concept. So explaining it in terms of something familiar can be very useful.
I use this 'shopping on a budget' analogy quite often.
Another popular one is the spoon theory (where a spoon is a unit of energy, you only have a few spoons, and each action you do uses up spoons)


Code Words
These are fabulous ways of communicating without sounding negative. "I'm out of spoons" or "Whose stolen my spoons!" are great ways of saying fatigue levels are high - if everyone listening knows the spoon theory! Code words are therefore best used within groups that know you a bit, or where people are familiar with the code word. In the online community of people with hidden disabilities and fatigue, the 'spoon theory' is so well known that most people will understand spoon references. but use it with family or colleagues and you are likely to need to give a full explanation.)

When I worked in an office, we had the 'Vodka Standard'. When my symptoms escalate, I get symptoms similar to being drunk (due to POTS). And if I get really bad, I need to lie down and cool down - but the symptoms mean I often don't realise how 'drunk' I am, so it was essential that people around me could notice and point it out. Instead of laboriously describing symptoms, things like "Hey, you aren't drunk today!" or "keep an eye on her, she's 2 vodkas already" were common place, amusing, and helpful.

However....

A new colleague started in our section. Halfway through the day "You're drunk, Hannah. 2 vodkas?"
Horrified, my new colleague sat thinking that I was literally drunk at 11:00am, at work, and everyone was treating it like it was normal! - The code was explained and all was well, but it shows how important it is to use code words with care!

Visual analogies/illustrations
These can be graphic or descriptive. I love them. Because they communicate accurately, but with a slight chuckle which, as Terry Pratchett wrote, "helps things slide into the thinking".

 So when fatigue is so bad I can scarcely lift a finger, and I feel tetchy, grumpy and grey, it's a rhinoceros.

Or when brain fog has stolen my short term memory, word recall and general ability to function at the required level, the zombie references creep in.


The possibilities are endless and you can invent any that work for you.

Similarly Internet memes can be useful.  For example for those days when I feel a bit better than a recent hideous patch, but am still very symptomatic I might use phrases like 'fragile-ly fabulous' from this image:

But remember: 50 memes in one day trying to explain your entire condition will be overload and ineffective. One or two showing the key points relevant to that day is much more effective.

Visual cues
These are another one I love.  Flash cards can come into this category, but so do 'traffic lights' type concepts.

Like our 'traffic lights' wristbands, or wearing coloured badges with red meaning 'bad day' green meaning 'good day' etc. Things which communicate instantly with those who need to know, without any conversation having taken place. these can make life so much easier and remove the need for a lot of talking about symptoms while still letting people know how you are so they can adjust expectations accordingly. Even things like having a 'bad day' T-shirt that family knows if you are wearing it, it means you are having a bad day can really help.

Actions
It's important to remember that actions speak louder than words - so if you hide the symptoms that your actions cause, the people around you will never understand. How can we expect them to understand what we don't allow them to see? This is covered in a previous blog: 'when actions speak louder than words'

Decision making
In my experience, one of the hardest things is when I say 'I can't do that' for good reason, and the response from friends or family is to try and persuade me that I should do it. Sometimes I might be underestimating myself, but often it's a communication problem: they are unaware of the thought process behind the statement. Perhaps I know I'm really busy the day before and so will need recovery time. Perhaps there is something really important the day after which I need to pace to be able to manage. So by involving that person in the decision making process they can gain a lot of insight. And can also start to understand the barriers and even start helping think up things that will make things easier to do.

I might start off by saying "I'd love to join in, can you help me see if it's doable?" and then I effectively follow this process:

So in summary: 

There are lots of ways to communicate. If one isn't working, try another technique.

Creating understanding is like building a house, it's best done one brick at a time, with careful planning - each brick in place is a little bit of progress. Dumping a whole heap of bricks in one go just makes a mess.