Welcome to Steve’s Aspie Adventures

Whether you are reading this as a parent, carer, friend or are on the spectrum yourself, a warm welcome to the blog and I’d welcome your comments. I was diagnosed with an autism spectrum condition as a teenager. Throughout my life this has brought unique challenges, deep lows but also very happy times. I hope with this blog I can share some of my experiences, challenges and successes with you. My hope is that it can help along the way at breaking down some of the fears, misconceptions, stereotypes that come hand in hand with Autism by giving an insight into what it’s like as an individual living with the condition.

At times when I’m affected most by my condition life can grind to a halt, but that has given me a drive to experience all I can when I’m feeling well. Travel brings a new perspective on life and the experiences it brings have made my good days even better and given hope in my bad days. For me it’s a metaphorical middle finger to a life-long condition. In my other blog (Roaming Steve) I share some stories of my travel and adventures.

I hope you enjoy reading this blog. Feel free to share this with your friends if you've found it helpful. I'd love to hear your thoughts, any topics you'd like to read about and own experiences so please comment or message me.

Please note, that in all my blog entries I can only relay my personal experiences and perspective. It is important to remember that every single person on the spectrum is an individual with a different story to mine. I have no medical expertise or training and am writing to share my personal experiences only.

Friday, 27 March 2015

Communication Confusion

Crowded, hot and noisy marquees aren't my favourite place and I was feeling very overwhelmed just being here, crammed into this humid dome with 10000 others. I'd been invited by a friend and I'd decided to come to this weekend festival just to try something new, have a new experience. If it was terrible I could just go home! I tried to make an assessment about where to sit and decided that right at the front would be best as then I couldn't see the mass of other bodies! Perhaps at the back by the door would have been more logical but I went for it anyway. At the front I discovered a quiet area next to the sign language interpreter and settled myself down for the start of the celebration.

I've not given sign language much thought before, 'how would they interpret the music?' I wondered. While the crowd behind stood and sung with their voices, in front I watched as the song transformed into bold movement and expression as the sign language interpreter lead his followers into a depth of meaning in the song seemingly missed by the thousands who stood limply behind us.

It was truly beautiful to watch. The energy and passion spread and by the end of the weekend we were all dancing. For the first time in years I was using more than just my words to express my feelings, I was using my whole self, it was liberating. 

That weekend taught me an important lesson about communication. Communication involves far more than just words.

It is easy to pinpoint the main causes of communication difficulties the deaf community face, but how does this relate to me, an aspie? 

As an aspie my brain takes in information in a slightly different way to most and growing up this gave me a slightly different communication style. Add into this the relentless negative responses when you get it wrong, it's no wonder communication can be hard!

When communicating our aim is to share information with others, feelings, desires, thoughts, information..... As humans we do this in full Technicolor, using our words, tones, voices, ears, body language, eyes, facial expressions, it all pains a picture to give the full meaning intended. Most people learn how to juggle all of this subconsciously, but my aspie brain is more into creating neat stacks of information and goes for the quickest and most direct route. This produces an often cold and robotic response that often misses the point.

Just think about the word 'yes' - depending on the tone and volume it's said, the inflection and the speaker's body language and context of the word it could mean pretty much anything! 

          Yes shouted angrily could mean I'm busy go away! 

          Yes? could be asking what do you want?

          Yes! sarcastically could even mean no!

Without any clues however the word 'yes' is only going to mean 'yes' - confusion is not surprising! I end up frustrated wondering why 'yes' can't just mean 'yes'!?

In many ways it is like comparing different languages. We may both be speaking English, but the meaning is getting distorted leading to confusion all around. It often feels as though I am in the wrong for not being understood but actually this isn't the case and it really shouldn't be a blame game here. I simply have a different way of communicating - a different language!

Changing my thinking around to this has really helped me tackle my own communication struggles. Instead of telling myself that I 'Can't' communicate, I see it as an opportunity to learn.

It can often feel like everyone else should meet me in the middle here but in reality it is a lot easier to learn how to communicate in as many ways as I can rather than expecting literally everyone to do it my way. It takes time and practice but is surprisingly rewarding. Simply typing questions like 'How to start conversations' into Google brings you so much information, so have a look for yourself and see what you can find.

There are of course times you really do need to have someone communicate on your level and this is fine too. I find it has helped me to be able to script and practice ways of asking for this. Lecturing someone on how something 'SHOULD be done because I have AUTISM' doesn't seem to go down well, but toning it down and perhaps saying, 'please could you write that down for me' or 'I'm sorry I have difficulty using the phone, I will make the arrangements with you via email' are ways of getting the point across without being too confrontational.

It really is a huge topic and I just wanted to write this post as an introduction this week. I will be continuing this topic in the future to cover far more detail. I'd love to hear from you about your experience and any particular aspects of communication you would like to be covered more in upcoming posts. 

I started this post with a story about sign language and thought I would try and find a nice video to end this week's post with. I came across this video, A version of Cyndi Lauper's True Colours recorded by Artists Against Bullying and signed in ASL by the Ontario Rainbow Alliance of the Deaf. I hope you find it as inspiring as I did.

Friday, 13 March 2015

Daring to Defeat Depression

Over the last week I've been approached to write posts on a number of subjects, Communication Skills, Cures, Confidence, all of which I am very excited to share my thoughts on but not this week. I've had a terrible week. Actually I've had a terrible month! I've really wanted to try and highlight as many positive aspects of autism in my posts as I can, but this week I'm going a different direction. I got thinking about why I started this blog. I wanted to share MY experiences. Good, bad, whatever, just my experiences, this week they've been really appallingly bad, so this is what you get to read about today.

Depression and anxiety aren't exclusive to autism, and some on the spectrum don't suffer from this at all, but it is very often something people with autism face, I'm one of them. Depression is a tiring and frustrating beast to face. We rarely openly talk about it and it still today comes with stigma and fear attached. It occurred to me that I would feel at ease posting a blog about having a cold or flu, a broken bone or a migraine. Mental health concerns however somehow feel more personal and harder to talk about. Why should this be the case? I wanted to face the fear and talk to you about it right here in my blog this week.

I didn't know how to talk about or explain how I experience depression and anxiety so I simply wrote how I felt during one particularly bad night this week. It's not neat and tidy, grammatically concise or detailed. It doesn't need to be, it is simply how I felt. I want to give the full picture in my blog, both good and bad, so here we go.

            Autism can be relentless.....
            meltdowns rolls into meltdowns,
            my senses burning, my brain imploding ,
            this hurts.....
            I'm so tired,
            but I carry on,
            questions, decisions, guilt,
            why is it so hard to say I need help?
            and this hurts....
            You ask who's at fault?
            who's to blame?
            we talk about it, talking for hours,
            but this hurts.....
            the adrenalin flows and my insides burn,
            guts twisted in knots,
            head pounds,
            this hurts....
            You say it's my fault,
            that I'm weak,
            to man up,
            ....but this hurts..........
            I can take some meds,
            numb the senses,
            shut out the world,
            it still hurts......
            I see your pain,
            I see your frustration,
            I see the hurt I cause you,
            and it hurts....
            why am I so wrong,
            so bad,
            so selfish,
            to sometimes want this to all stop
            .....because it hurts?

            breathe in




            breath out

            and relax

            tomorrow will be a better day?

Tomorrow was a better day this time, but each day one person dies every 40 seconds because it wasn't a better day. Suicide is the biggest killer of men under 50 in the UK, let's all play a part in reducing this statistic and talk about mental health. There is still a stigma about mental health issues that MUST be removed. Depression is a silent killer and is no more a choice than any physical illness so let's treat it the same and be open about it's affects and find a way forward together.

If you need to talk today or have concerns about someone you know then here are some phone numbers for you:

UKSamaritans 08457 90 90 90

Republic of Ireland: 1850 60 90 90

USA & CanadaNational Suicide Prevention Lifeline 1-800-273-TALK (8255)

AustraliaLifelink Samaritans: 03 63 31 3355

For a larger list of countries visit http://www.suicide.org/international-suicide-hotlines.html 

Sunday, 1 March 2015

Sensing Something Strange

Is it blue and black or white and gold? Unless you've been hiding from the world for the past few days you are probably aware I am referring to a photo of a dress that has been flooding the internet. It shows an optical illusion showing how two peoples eyes can perceive colour in very different ways.

Sensory differences are something those on the autism spectrum are often all too familiar with and Sensory Processing Disorders are a common part of the condition. This week, while the debate about the dress colour rages, I wanted to share with you how many of us on the spectrum experience lots more than just colours differently.

Sitting around with friends late in the evening the conversation often turns to deep and random questions to ponder. How do you explain the colour ‘red’ to a blind person? How would a deaf person understand the concept of ‘loud’? Interesting thoughts to mull over but for us sat around the table, well we were all sensing the world in the same way right? Well not quite…. 

From seeing the a red apple our eyes send a message along out circuit of nerves where out clever brain cells get to work at deciphering it into something meaningful. Parts of your brain will fire into action and tell us that what we are seeing is indeed red, that’ll tell us if we like the colour, how bright it is, if it’s edible, if it could harm us an so on – all from a single signal from out eyes. This is what senses are all about, out brains translating the world around us into some meaningful information. There are so many more senses than the well known sight, sound, taste, touch and smell. We sense heat, time, balance, body position (close your eyes and touch your nose – how did you know where your hand was in space? This is called Proprioception), the list goes on. Our brain does a fantastic job at turning all of this into useful info to help us navigate the world around us.

We all have slight variations on how our brain handles this flood of information. Perhaps when looking at the red apple your brain say to you, ‘Ah look, a tasty fruit, I feel hungry,’ or maybe it says,’ Yeuk, I don’t like apples,’ either way your brain has almost instantly recognised the abject and told other parts of your body how to respond. But what if this doesn’t happen, what if our brain translates it more like, ‘an apple is edible but red is danger, release lots of adrenaline ready to run’

For those on the autism spectrum how we experience senses are often very different from the average person. Instead of taking a logical path through the nervous system the message goes for a wander and gets all confused. This is what happens in sensory processing disorder; a common attribute that affects many on the autism spectrum but one that is frighteningly often overlooked. The effects can broadly fall into three groupings:

Oversensitive: Too much information reaches the brain.

Try this example out:

Listen to the sounds in the room you’re in now. Can you hear traffic outside? Perhaps there is a clock ticking? There might be people talking or a radio on nearby. Listen closely, can you hear the computer fan humming or the light buzzing?

Chances are you could identify each new sound and focus on it separately? With an oversensitive neuro-connection all of these sounds would come at once in a big wall of noise, your poor brain just doesn’t stand a chance at making any meaningful distinctions here thereby rendering communication impossible.

Undersensitive: Too little information reaches the brain.

Try this example out:

Rest your hands down in front of you. What can you feel? Perhaps it’s a wooden desk or the soft fabric of your trousers? Is it warm or cold? What is it’s texture light, maybe it’s smooth or rough?

Can you now describe what you just felt? Now try this wearing gloves. How many much of this would be different. You would probably miss most of the textures. With an under sensitive connection the messages sent to your brain get filtered out and lost.

Confused Senses: The information sakes a somewhat ‘alternative’ route through the brain.

Sometimes instead of taking the direct path the signal takes a detour and gives the brain a rather different message. This is called synesthesia. One sense gets mixed up with another. The results can be random. With synesthesia might be able to ‘taste’ colours or ‘see’ sound. Perhaps we should be asking if the dress 'tastes' of strawberry or lemon, instead of the colours! The benefits of this can be huge – think of the music abilities if you can see each note! For me it’s less than helpful, – certain textures and visuals make me feel very nauseous. I’m not telling you which, too many of my friends would use this for practical jokes on me!

To what degree and which senses are affected vary drastically in each person and is dictated by a roll of the genetic dice. My sensory difficulties are something I’ve long been aware of but not something I thought could be improved. I was offered a chance to undergo sensory integration therapy and I snapped up the opportunity.

Sensory Integration Therapy doesn’t aim to ‘cure’ the imbalances in the senses, rather it aims to regulate and moderate the more distressing aspects. When the brain gets over or under saturated by messages it can just switch it’s self off in a meldown or shutdown which is something best to be avoided. In a previous post I wrote about my experiences of meltdown, check it at this link.

The sensory integration sessions start by working through many varied tests to establish which senses are affected in what way. This allows a targeted therapy plan to be put in place. After all if you have an oversensitive sense of touch it needs desensitising and vice versa!

The therapy itself is a scattering of different techniques and tools to balance the senses. It’s caused much amusement for my colleagues at work after each session as I return to the office armed with various weird and wacky new gadgets to try out.

The biggest surprise to me what how much two surprising senses were affecting me: Vestibular (balance & coordination) and Proprioception (position in space). I’ve always known that these were under sensitive for me. I can fall over a flat surface and can’t catch a ball to save my life. What I didn’t realise was how pivotal these were for keeping everything else in check.

Now, bear with me on this one, let’s think about an iPhone. There are plenty of apps and you use them they drain battery power and you need to recharge the phone. If the battery runs out the phone turns off. Simple. Some apps use vastly more battery than others so as the battery gets low we moderate our usage. With low battery I probably won’t use music or video apps or take photos etc. Now lets think of the iPhone as our brain and the apps are our senses. It is the Proprioception and vestibular senses that are the most draining on our batteries, and as we get low on power so the others start to fall away faster and faster until we just ‘turn off’

I’m sorry if that analogy was a bit obscure, but it is one that helped me to understand the situation. In summary our brain spends more time and effort keeping the Vestibular and Proprioception in check than it does with the other senses, so when it’s getting tired (or in my case, having an uphill struggle as I’m under sensitive in those areas) it’s other things like sound, taste, smell etc that start to close down first as my brain looks for ways to free up resources. Biologically this kind of makes sense. As a cave man faced with danger knowing my body position and maintaining balance would be essential in the fight or flight scenario. For me today and now it gives a clue as to the way forward. Train my brain to use up less effort managing these senses and the others will all fall in line as being easier to deal with.

In coming posts I’ll be discussing more about how my new experiences in the world of Sensory Integration and letting you know hoe I’ve been getting on. I’ll also write a post to review some of the equipment I’ve been trailing. Do you have any equipment or techniques you’d like to be added to the review? If so then please let me know.

This was a subject that I am only just beginning to learn about and I hope you’ve kept with me until this point! If not, then you’re not actually reading this apology, but sorry for loosing you anyway! So assuming you’re still here reading this than thank you and I do hope you found this post of interest. Please feel free to share this post and get in touch with your thoughts and experiences.