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.

Sunday, 31 May 2015

Reflections on a Year of Blogging

When I started this blog I never suspected it would be still going a year later. I wrote my first post after a few people asked if I would share some of my experiences with them on living with an autism spectrum condition. In the year since I have learned more than I could have ever imagined from the simple act of writing this blog. Over the coming months I will unfortunately not be able to continue to post as regularly as I'd like. Recently I've returned to full time work which is great news, but also means I've got to give it my full attention and have had to make the decision to put this blog on the back burner for a while.

For those affected by autism, both on the spectrum itself or supporting someone who is, it can often seem overwhelmingly isolating. The thing that has really stood out to me over my year of blogging is what an amazingly supportive community there is out there. By opening up and sharing my experiences I have got so much comfort from realising that I'm not alone and having the opportunity to hear others' stories and experiences. I've had the pleasure to meet some amazing new friends all over the world. It has also opened my eyes to realise that sharing my story can be of help to others. It's easy to get trapped in a bubble of being told how things are by professional 'experts,' who often seem disconnected from the realities of life.

What I've realised is that actually I am an 'expert' too, I've got 31 years of experience at living with autism and sharing my experiences, good and bad, can help others. You can too, YOUR experiences are truly valuable and there are so many people out there who would get a lot of encouragement from hearing your own story, perhaps you know what it's like to live on the spectrum, or you know what it's like to parent a child on the spectrum, or you have some routines that help you, or you know the strain of holding back a meltdown. For years I felt scared to use my voice and be open about my experiences, but it's been the best thing I've done and now I know we're really not alone.

So on that note I'll say farewell for now. I will be back later in the year, so for now please feel free to keep in contact, I look forward to hearing from you :-)

Friday, 8 May 2015

Do We All Have Autism?

'Everybody is on the spectrum somewhere'

I'm sure this statement is familiar to most of us. It's a statement that many of us with, and indeed without an actual diagnosis may have been told or perhaps said, but is it true?

I personally would answer that no we are not ALL on the spectrum. I believe there is a clear boundary between having and not having an ASD, and don't find the view that you can be 'a bit' autistic accurate or helpful, and this is why...

Lets start by looking at what autism actually is. Autism is a neurological condition affecting how the brains neurotransmitters communicate and deal with information. It is a life long condition that cannot be cured. The way it affects an individual can vary but the symptoms can be categorised into groupings, this is where the term 'spectrum' comes in.

There is a common misconception that the word spectrum means there is sliding scale from 'non-autistic / neurotypical' to 'severely disabled'. This is not the case, it's more accurately a grouping of conditions (eg. Classic Autism, Aspergers Syndrome, RETT Syndome, PDD NOS) each condition sharing patterns of how the underlying neurological difference has caused an effect, all under the umbrella of 'Autism Spectrum' The National Autistic Society explains this as,

            'It is a spectrum condition, which means that, while all people with autism share certain difficulties, their condition will affect them in different ways.'

One difficulty I have noticed in explaining autism to someone is the fact it's a hidden disability. How ever much you stare at a person you won't be able to see their neurotransmitters, so how can you tell if they are different from yours? You can't, so it's the outward signs you'll see. This is where it can get tricky.

With specialist equipment there are undeniable differences clearly seen between those on the spectrum and those not. Brain scans show distinctly different patterns between neurotypical and autistic individuals. Another example is eye movement research which again clearly shows distinct differences in how people on and off the spectrum process information. So this seems clear cut, why would there be any doubt?

If you saw me having Sensory Overload, Shutdown, Meltdown, in a non verbal state or stimming, you'd instantly say there was something going on here that most people don't seem to experience, but I don't tend to display those traits in public if I can help it! Instead you get to see effects you can relate more to.

The social awkwardness, anxiety, confusion and general day to day difficulties are actually experienced by everyone at some point. If I said I feel so overloaded I just need to go to sleep I think most people could relate to that. Again if I explain that if I'm stressed I get tongue tied you could probably relate. How about shopping... the supermarket can be overwhelming because it's so busy, yep I guess you've felt that too at times. This gives the impression that these traits SHOW that someone has autism, so if everyone can relate then everyone has a degree of autism?

Lets myth-bust this theory with the statement that social awkwardness is a sign of autism. Just think back about your own experiences, how many times have you said something you regretted afterwards? How many cringe worthy jokes did you tell at the office party? How many times did you try to talk to your crush and make a fool of yourself? You thought of a few didn't you? I guess we all have a stock of encounters that make us squirm a bit when we remember them, but does this make us all autistic? No, it makes us all human! These social awkward moments happen to all of us, autistic or not, where the difference is comes back to the pesky neurotransmitters. In an autistic brain they are so busy processing the world in their own eccentric way that I often make social faux-pas without even realising, on a daily basis. Imagine those embarrassing moments you recalled earlier - now that is what 'mild' autism feels like when socialising EVERYDAY. Even a quiet and uneventful evening out can result in a bad meltdown for me (which is literally where part of my brain stops functioning for a short while, similar to a seizure), if this is something everybody experiences on a regular basis they certainly keep quiet about it! So you still think you have mild autism?

So we've established that some traits of autism can be related to by all. If I were to take the same approach here are some of the conditions I must therefore have...

I have hypos when my blood sugar drops which means I must have mild diabetes? Some days I have mood swings which means I must have both mild bipolar and menopause? I have a headache right now which means I must have mild brain tumour? Every day I get tired and go to bed which means I clearly have mild ME? Doesn't work does it? Perhaps you thought this was a bit insensitive and insulting to those with these conditions?

Yes it was insensitive, and that's how I feel about this statement towards autism. To say that EVERYONE is autistic in some way creates a number of problems for me.

By removing the distinction; removes the need for support for those on the spectrum by saying  that they don't really have a condition requiring support or therapy. It belittles the struggles faced by all those affected, however hidden it may be to you. It also makes support conditional on the effects being clear and obvious. I can tell you that when I'm having a hard time the last thing I want is to have to justify my diagnosis to someone with no medical knowledge who has never seen me at my worst!

It also creates a barrier to those not yet diagnosed. There is enough stigma with autism and related mental health concerns as it is, so please let's not create another one by dismissing someone's genuine struggles by saying that we all go through it.

On the flip side however I do still see it as important to recognise that regardless of diagnosis, many of the struggles I face as an aspie can be related to and even shared by those not on the spectrum. Although a strongly feel that there is a distinct divide separating those on and off the spectrum, this is simply a realisation that I the condition is a real thing and not a scary evil thing that should be used to create a gap between 'us' and 'them'. It is good to have the distinction when dealing with medical interventions and support; but with friends and family? Often I will share an experience I have had that I think of as being an 'autistic' trait only to find a friend not on the spectrum also can relate. This is great to bring us closer and our shared experiences and often different approaches to overcome obstacles unites.

This to me embodies neurodiversity - the celebration that we are all wonderful and valuable in our uniqueness - each and everyone of us regardless of functional labels.

For me it is important to ring-fence and understand my diagnosis as a medical and neurological thing that I (as a person) can take control of, I find this helpful and beneficial in my own journey at coming to terms with the diagnosis. Others take a very different view, and this is totally fine. What is important is that we find our own way to understand what the condition means to us.

In this post I've expressed strong views on why I don't think we ALL have autism, but they are just that, my opinions, based on my journey and experiences. Many have very different views and very different reasons why they hold them true. There is no hard fast correct answer here and I have presented you with my feelings, but how about you? Let me know your thoughts, whether you agree or disagree, I'd be very interested in your opinion, do YOU think we ALL have autism?

Friday, 24 April 2015

Communication Confidence

Communication difficulties is possibly the most well known struggle that those on the autism spectrum face.

The aim of communication is to exchange information and ideas with others. It is an essential skill to have in life, whether we are simply communicating that we are say hungry or tired or engaging in more complex communications of a business negotiation or scientific research paper it is clear that communication skills are really quite important to all of us.

So what is it that makes communication hard for us aspies?

The trouble with communication is the way we are dealing with multiple streams of information at once and my brain struggles to interpret this.

Just think about the word ‘yes.’ It’s meaning is clear isn’t it? Well not quite. If it is said with a nod of the head it could mean that it’s a positive response. If the tone of voice raises at the end it could be a question (yes?). If you’ve just approached someone and they say ‘yes’ they are really saying ‘what do you want?’…..

The list goes on and it’s clear that even simple words change meaning depending on the context and tone they are spoken in. The same is true for text. If I SUDDENLY WRITE IN CAPITOLS you might think I’m being angry and shouting, or perhaps I’m just highlighting an important sentence for you to remember.

Most people simultaneously take in and understand these multiple messages and unspoken clues with little effort and can then respond the most appropriate way. For us aspies it’s often not the case and instead we need to consciously learn to read and understand the messages being given. In a way it is just like learning a foreign language. This is an analogy that has helped me greatly when I’ve found myself frustrated by communication difficulties. As a handy twist of fate, a fairly common aspie trait is a strong ability to learn and absorb information so learning to communicate fluently with the ‘native neurotypicals’ can be both fun and achievable, so long have patience and persistence. So where do we start?

I’ve listed a few pointers that have helped me along the way and I hope they help you too. At the end of this post I will use some example situations to get you started but intend to go deeper in further posts.

These are tips have worked for me in the past, but we all learn in different ways so please have fun adapting this to suit you and please feel free to add any tips you have found helpful to the comments section.

1: Who do you want to communicate with?

In the above examples I showed how communication varies greatly depending on the situation.

Before even starting to work out how and what to communicate we need to think about who you want to communicate with. Perhaps you want to be better at communicating with friends, or colleagues at work, or emails, or phone calls, the choice is yours.

2: Identify the Challenges

Now you have decided which style of communication you want to improve I’m going to ask you to do something important, but uncomfortable.

Make a list (either on paper on in your head) of what you find difficult about this. Be as critical and brutal as you like.

It feels very un-natural to be critical and negative when trying to learn something but actually I find this a helpful exercise. Usually we are encouraged to ‘think positively’ but actually for this process we need to be able to separate what we can already do and what we struggle with.

So perhaps you’re now sat looking at a list and feeling a bit defeated. Actually what you are looking at is a list of things we are going to learn how to conquer. We have identified our enemy and it’s time fight these challenges.

3: Set some Goals

Looking at our list of challenges we might start to feel overwhelmed, where do you even start?

What we want to do here is start to break down these issues even further and form a set of goals that are manageable.

Perhaps we have said that we find making friends hard because you don’t understand people. It would be a huge task to tell ourselves that we are going to suddenly have friends overnight, but perhaps we can break this down into smaller chunks. What do you need to learn here? Perhaps learning to better understand body language might help? Or learning some conversation starters? Building some self confidence to meet people? – these can all be made into smaller, more manageable goals. Instead of setting myself a challenge of being perfect at communicating with friends, I could say ‘this month I will try and learn how to start a conversation’ – this is achievable and a step towards my final goal.

What skills do you think might help you to achieve your goal and what skills do others seem to ‘just have’?

4: Learn – Study & Research

Now we know what it is we want to know how to do, how so we gain the skills to be able to do it? It’s time to get our academic heads on here and start to study.

What we are doing here is asking all the questions you were probably afraid to ask, but there’s no silly questions here and we have a great tool at our hands to help us along…. The internet.

The internet allows us access to vast amounts of information and it’s time to tap into this. What we are looking for is information and advice on the topic we are looking for. It is helpful for me to ask the question ‘how do you ...... ?’ as if I am looking to see what exactly it is the other person, this gives me clues as to what I can start to practice.

            Perhaps you want to learn how to improve eye contact – ask the internet ‘how do you      improve eye contact?’
            Perhaps you want to know how to invite a new friend over - ask the internet ‘how do        you invite a new friend over?’

            Perhaps you want to improve your writing skills - ask the internet ‘how do you     improve your writing skills?’

Can you see the theme developing here?

As we search we will come up against lots of information, so how do we know what is relevant? For this we have to give ourselves a filter. Do I find what I’m reading helpful? If yes, then I can consider it and move on – if not, scrap it and move on.

Having trusted people (perhaps a care worker, family member, support group or friend) to chat through ideas with is a great help too.

Some useful websites I’ve found are http://www.helpguide.org/, http://psychcentral.com/ and http://www.wikihow.com, but you can also have a look for ideas on YouTube and Google. Always remember though that you will simply be reading other peoples ideas, so if you do not agree with what you read or you try something out and it doesn’t work for you then simply leave it. If in doubt ask a trusted person for their advice.

5: PRACTICE! - Step out of your comfort zone

So by now we are brimming with knowledge about your new skill. Perhaps you now know the correct way to use newly learned phrase or can recite the rules on small talk etiquette, but you still come across as robotic or fake. This is because we need real practice with real people. This takes courage and persistence but is what moves us from knowing how to communicate to actually communicating naturally and comfortably.

Look for as many chances to practice what you learned in step 4 as possible – and don’t be afraid to get it wrong!

I’ve often found that I get great practice by going and staying at a youth hostel or joining a tour, even if it’s in my local city. A day spent with tourists has two advantages – As I’m around people from different areas a lot of my differences are immediately seen as being because I’m assumed to be from elsewhere and I start with a clean slate. I am also able to make as many embarrassing mistakes as I like fairly consequence free – I’ll never see them again!

The tricky part is that there is still some embarrassment and it’s still often a long and frustrating process but one that opens your horizons and has real results. The adventures you take add to the experiences you can then chat about in future. Volunteering in a charity shop gave me practice in speaking to the public AND a good story to share at a job interview. A weekend in a youth hostel in San Francisco put in the deep end learning to socialise in a Night Club, Coffee Shops and taught me to make small talk AND provided great storied to share with people when I get back.

Just by focusing on a small element of the overall issue we identified in part 1 we are building our confidence and having an adventure along the way.

6: Enjoy yourself

As you start to build your confidence then it is great to look back to what you want to try and improve next. We never stop learning and developing our skills and as you conquer your fears you can have a great time learning the skills you want to be able to communicate well.

I hope you have enjoyed this post and found it of help. I really look forward to hearing about the adventures you have as you learn new ways to communicate. Please feel free to share this post and leave comments.

I will be covering this topic in far more detail in future blogs so please feel free to let me know of any tips you would like to share or any topics you would like to read more about.

Friday, 10 April 2015

Diagnosis Dilemmas - Q&A on autism diagnosis

Diagnosis is a topic that pretty much everyone on the spectrum has at some stage been affected by. Perhaps you were diagnosed as a child or as an adult, perhaps you have no formal diagnosis and feel it is something that you don't need or you want a diagnosis but really don't know what to expect from it.

This week I wanted to have a look at the topic of diagnoses in the form of a question and answer session.

Before I get started I just want to note that here in the UK the services offered vary wildly depending on where you live, my answers are based on my experiences alone. I'd love to hear your story, especially if you live in a different area or country. Feel free to add your views to the comments section.

How old were you when you were diagnosed with asperger's?

I've actually been diagnosed officially twice, so I've got two answers to this. The first diagnosis was when I was 16, or to be precise on my 16th Birthday. I was leaving full time school and it was clear to me that there was something going on for me that really needed addressing. I had terrible problems during my teenage years and the wishy-washy explanations I'd been given just didn't make sense to me. Finding myself on the brink of starting my adult life in such a vulnerable position spurred us into getting me a conclusive diagnosis. 12 years later I received a second diagnosis that matched the first. I had hit some difficulties at work and my line manager was refusing to accept that I was on the spectrum. She had dismissed the first diagnosis claiming that autism is a childhood thing (suggesting that I had grown out of it if it was even there to start with) and that I clearly didn't have it (she truly believed that those on the spectrum can't talk). Getting the re-diagnosis not only helped secure some adjustments to the working environment for me but also helped me re-confirm things for myself.

Why did you not get diagnosed as a child?

Diagnosis in childhood becoming far more common these days, but back in the early 80s when I arrived into this world it was fairly rare. In the years since far more research and knowledge is available allowing for much earlier diagnosis. For me the signs were missed and it was all the more autistic traits I displayed as a child were put down to things such as bad parenting / premature birth / bad behaviour / food additives etc, as I got older this moved onto almost random guesses at 'your son might have..... ADHD? / bereavement issues / ADD? etc' but at no point was any diagnosis offered. When an actual diagnosis was brought up it was generally considered that it shouldn't be offered as I might use it as a label to hide behind.

What did the diagnosis involve?

A series of tests are carried out ranging from a full IQ test to manual dexterity and problem solving tasks. There was an extensive series of questions relating to how I feel about various scenarios and a fairly long and invasive questionnaire relating to my behaviours and development as a child. The questions can feel quite intrusive and intimidating so I recommend taking time over the questions and asking someone close to help you out if you find you're struggling with them.

Following this diagnosis more in-depth testing and therapies often get offered. I've had follow up tests to manage the sensory processing aspect of autism, sensory integration therapy and various therapies to address meltdown management and social skills.

The National Autistic Society has a very comprensive guide on how to request and what to expect from an adult diagnosis for those in the UK at this link: http://www.autism.org.uk/about-autism/all-about-diagnosis/diagnosis-information-for-adults/how-do-i-get-a-diagnosis.aspx

I've not included any links to information about diagnoses in other countries or for children as I don't want to give you bad information as I don't know those areas very well myself - I welcome you to add any information you have that may be of use to others in the comments for others to see.

How did you feel about the diagnosis?

When I first received the diagnosis I was a bit shell-shocked. I remember having a typical teenage strop and telling my parents that it was a really crap 16th birthday present! I was given a list of things that I wouldn't be able to do because of the condition and really nothing positive was presented to me. Once the shock had passed it turned to relief. For a long time I had known there was something different about the way I was experiencing the world but having a reason why meant I could stop blaming myself and start to live my life, and I wanted to prove those who said I would never achieve anything wrong, I had mission!

What benefits has the diagnosis provided you?

There are two main benefits I have found from having an official diagnosis.

The first is a personal one. Having a piece of paper in my hand that conclusively proves that the struggles I've had are real and not just a weakness of character really helps me to overcome the pain of times things are bad. The diagnosis also provides me with a really useful tool to use to seek help, understanding why and how I'm struggling really gives me the key to figuring out what the solutions are.

The second benefit I have found is a purely practical one. By having a diagnosis I am officially classed in the UK as having a disability which automatically provides certain levels protection and support. It also opens up doors to getting specialist services, home support, treatments, advocacy etc, that are only offered to those with a diagnosis.

What disadvantages has the diagnosis given you?

None. I'm not saying this jokingly either, there really haven't been any disadvantages as such. The only negatives I could scrape from the barrel are that the process of actually getting one is frustrating and lengthy. Since getting the diagnosis it's only ever been beneficial for me.

The concern posed to me before my diagnosis was that it could be a label I could use to hide behind. In my experience it seems to actually work in reverse and having the label gives me more power and control over the struggles. To be fair if I was going to hide behind a label then I'm sure I would have found something to hide behind anyway and the effort in fighting for diagnosis would have been too much of an effort!

I've also heard often the concern that having a diagnose might disadvantage you if someone is prejudiced against those on the spectrum. In reality if you encounter small minded people like this then having the diagnosis legally protects you, actually in this situation not having the diagnosis would be the disadvantage. If I ever feel self-conscious or wary about disclosing my diagnosis then it's perfectly OK just to keep quiet and not tell anyone, having a diagnosis doesn't mean that I have to declare myself as an aspie to everyone I meet (although having a blog kinda does that for me!).

I suspect I am on the spectrum, would you suggest I get a diagnosis?

For me having a diagnosis has been a very positive thing but that doesn't mean I will be insisting everybody rushes to their doctors tomorrow for a test. There has been clear advantages for me in getting support as I often struggle but the process of diagnosis is frustrating and intrusive. I'd recommend assessing yourself if you feel a diagnosis is right for your own personal situation. I attend a support group in my local area that attracts many people both with diagnosis, self diagnosed and those just finding about the condition for themselves or someone they know. If you have questions about diagnosis groups like this and online support groups are a great way to chat things through with people who have gone through the process themselves. It's good to get a variety of views on the subject to help you make your own decisions.

I hope you've found this weeks topic interesting. As always I welcome your feedback and views. Please feel free to send me in your comments and questions below.

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.

Thursday, 12 February 2015

10 Reasons You are NOT Cupid

Valentines day is upon is once again. It’s time to shower your loved one with rose petals and luxury chocolates and smugly declaring your perfect and unmatched love to the world. I’ll sit here as a singleton and feel sad and lonely…

Well not exactly, I’m actually pretty happy for now being single, but many of my friends don’t seem so convinced. Valentines day seems to be the time of the year when it is seen as a great time to raise the issue of how asperger's affects relationships and ask some very pointed questions that normally people probably wouldn’t dream of asking.

This seems a great opportunity to address some of these questions or comments and answer some of the stereotypes. The following are a list of statements I have genuinely received and a light-hearted look at each one. It is important to remember that I’ve made my answers based on my own personal feelings, we are all different so perhaps you’d answer in a very different way. I’d love to hear your thoughts and experiences on this topic and I do hope you enjoy this post,

So let’s get started…

1: It must be so hard finding a girlfriend as an aspie…

Yeh, I guess it is, but probably not for the reasons you might think! I don’t know many people (aspie or not) who find it truly easy just getting a girlfriend, let alone a compatible one. The main hurdle is communication. When faced with stepping out there and making a good first impression with someone I find attractive I usually panic and say something random, but that’s definitely not exclusively an aspie problem! Beyond this we’re all different and the way we approach finding the love of our life and what we’re looking for in a partner varies just as much as it does for those not on the spectrum, although some of the factors are. Questions like how and when (or even if) to tell them about my condition do play a big part. For me it takes me a while to feel comfortable around new people so meeting someone new in say a bar or nightclub has never been great for me, but developing a relationship over time has been successful for me. So yes there are challenges, but I don’t think they’re it’s necessarily any easier for those not on the spectrum.

2: You should meet my friend, she has asperger’s too, you’d be perfect together…

I have a friend who is stupid, perhaps YOU could date them?!

Perhaps I will get on with this person, perhaps I won’t. The only thing volunteered here is that they have asperger's, like me. This tells me nothing about them as a person or their personality. I’ve actually been told this in a number of occasions, in various different forms – two people with autism would make a perfect match because they have autism in common.

This is no different from telling someone that if you’re British, then any other British person would make a perfect match for them. We wouldn’t say that! Well at least I hope not…

3: You must be lonely being single…

Yes sometimes I am, but you can also be lonely when with someone. Loneliness is a big factor for many on the spectrum, whether single or in a relationship. I can go for long periods of time with little to no interaction outside of work or care settings, it can get very isolating at times. When I’m most struggling it becomes increasingly hard for me to communicate and this can fuel the feeling of loneliness. If anything it’s actually worse when in a relationship because the barrier this temporarily creates whilst the meltdown or crisis passes can isolate you from those around you. It is never pleasant going through this feeling isolated from those around you but it passes and in many ways it is easier to handle these times when I can just go and be alone for a while. Having good friends and joining clubs also works wonders if loneliness creeps in, but I’m under no illusion that I only experience loneliness because I’m single.

4: If you were more outgoing, less outgoing, more bold, wore different clothes…(and so on)… you’d find someone

Yes I’d find someone, but not the right someone! How long could I keep up the pretence of having a different personality? Perhaps if I want to change any of these things about myself then I should do it for me, not for some one else? I’m a work in progress, just like everyone else and whoever I meet joins my journey right where I am now.

5: Aspies don’t have empathy so they can’t have relationships.

Aspies not having empathy is the biggest myth there is. It is simply not true, and recent research is beginning to show that it could be the opposite, that we have too much empathy! It is true that it is in many ways harder for aspies to have relationships but it’s not impossible not related to empathy. The social cues and unwritten rules in starting and maintaining a relationship are a minefield and often confusing for anyone, let alone someone with communication difficulties that come with autism. In past relationships I’ve often come up against barriers where I was ‘expected’ to act a certain way, say certain things, do certain things that I was just clueless about and vice versa. As an example if my girlfriend was upset I might naturally leave her alone. For me I need space when I’m upset so I was showing empathy by allowing her the space that I would want in this situation. She, on the other hand, might perceive this to be lack of empathy and show me to be distant and uninterested. Really this just shows that we both do things in a different way and need to communicate about issues that others might not necessarily need to talk about.

6: You’ll Want to Start a Family One Day

Perhaps, but I’m realistic that I’m getting older and it might not happen. I’d love to be a father, but I’m also quite content with not having children. It’s something that’s out of my control so I don’t see this as burning issue that absolutely must be resolved instantly.

7: Do you think you should have children? What if you pass on autism…

It is possible that autism is genetic so I guess I could pass it on, but why should that be a problem? I’d argue that I’d be in a great position to be able to pass on what I’ve learned through my life experiences to a child, whether they have autism themselves or not. Perhaps we’re more at risk of you passing on ‘stupid,’ – ignorance is the thing that needs to be wiped out, not autism!

8: You Need Someone so they can Help You Around The House

Yes I do, that’s why I have a support worker. Having a partner would clearly reduce weight of domestic tasks and financial responsibility, but this should never be the motivation behind a relationship. I don’t want a second mother (one is plenty enough), I want a relationship. Even in a relationship I’d probably still keep outside support in place. After all I want to spend my time enjoying my partner’s company rather than burden her with medication and sensory integration routines!

9: You can’t really be happy on your own can you?

Our society pushes a view that to be happy we MUST have someone to share your life with. This is not true. There are plenty of people I who never settle down, get married, have two kids and a pet dog, and they’re definitely not leading a substandard life.

In reality it could be that I never meet the right person and stay alone, but actually this isn’t so bad.

Being single allows me the freedom to live life with far more freedom than many of my married friends. If I need to make a lifestyle change I don’t have to consider my partner. (Recently I moved house to get better healthcare, this may not have been even an option if I had a wife and children to consider), if I have a bad day I can be as grumpy as I like and not have to worry about it affecting someone else, If a friend is in need I can drop everything to help out, if I want to go away for a weekend… no problem. Yes at times I do envy the family life that these friends have but it’s far better to appreciate the benefits of the life I’ve got now, rather that wishing I had what someone else has.

10: The right girl is out there for you, you just need to go and find her…

She is, but I don’t think I will find her, I believe we will find each other. If I get on with my life, and live it the best I can, be happy with who I am then the rest takes care of itself. Call it fate, destiny or just chance, I believe that if you meet people while living your own life and then who knows where things go.

So if you are spending Valentines Day alone this year like me, then join me in celebrating all the reasons why being single is actually pretty ace. Whether you are in a relationship or single I’d love to hear from you in the comments. Share your thoughts on why you enjoy being in a relationship or being single? What struggles have you had in relationships and do you have any tips for others?

Friday, 30 January 2015

10 Things the Church can do to Support Aspies

TRIGGER WARNING: This post deals with the topics of religion and faith. Because of the nature of the subject and I will be writing from a Christian perspective. If this is a topic you feel isn’t for you then I’d advise not reading further. In this post I have tried to put aside my personal feelings regarding God and faith and look instead at what has helped me make sense of my faith and access the church. I am conscious not to offend or sway your beliefs with this post, I simply want to outline my experience of what has and hasn’t helped me to access the church and my faith in the hope it can be of use for others.

 ‘How can our Church support those affected by Autism?’ a friend asked me over a coffee recently. The directness of this question sent me into a tirade that I think surprised both of us. I could see on her face that she was regretting asking this question, but it got me thinking. I spent many years holding my Christian faith close and was an active member of my local church but that was in the past and I no longer consider myself to have faith and the church isn’t a feature of my life. For a topic I didn’t think affected me in any great way, the passion of my response to the question got me thinking. It dawned on me that irrespective of my faith (or current lack of) the influence the church has had for me has been and has the potential to be very positive. When this question resurfaced on a number of occasions since starting this blog and with Autism Sunday fast approaching I thought it was time to look at this topic in more detail.

The International Day of Prayer for Autism (also known as Autism Sunday) takes place across the globe on the second Sunday of February. I like the sentiment behind this event but want to look at whether there are things the Church community can do to support those on the spectrum throughout the whole year?

So lets get started….

1: Provide Information on What Can Be Expected From Your Church

Knowing what to expect is a really important factor for me when going somewhere new. If I visit a new place it helps to have as much information beforehand on what to expect. The unknown and unexpected is very daunting so knowing what’s going on before arriving can really help me to feel relaxed and at ease. How can you do this?

Perhaps you have photos of your church and information about services on your website? This will help me see what your building looks like and know what to expect. If things get too much, knowing in advance that there is a coffee area or where the exit is can really make things a lot easier.

Photos of your leaders and key personnel will also help me know who’s who when I arrive. Perhaps you can arrange to meet me before hand or put me in contact with a member of your welcome team. This way I will already know a friendly face when I arrive.

2: Don’t Make Assumptions

So I’ve just walked into Church. Why am I here?

Perhaps I’m a Christian looking to worship God. Perhaps I’m visiting the area and joining you for the service. Perhaps I’m a regular attendee and you see me every Sunday. Perhaps I’m struggling in some area and looking for help. Perhaps I have no interest in faith but want to meet some new people in the area.

It could be any reason. Whether I attend regularly or this is my first time there is no way of knowing exactly why I have chosen to walk through the doors and into your church. It’s best not to make assumptions as to what’s brought me here.

3: Be Welcoming!

This seems straightforward, but in reality there are some factors that can really make a big difference here.

Arriving at a busy church can be overwhelming at the best of times, but with the complications of autism it can be a barrier that stops you even getting through the door.

Lets picture a fairly typical scenario….

I arrive at the church. I’m not feeling great and I’m anxious and not at my best. There is a throng of people milling around the doors chatting. I feel overloaded so push past and enter the building.

I’m faced by the welcoming team. A line-up of bouncers in corporate church uniform insisting on communicating with me before I can enter the service. ‘Hello, Welcome!’, ‘Take a leaflet’, ‘Have you been before?’ ‘Here’s our gift aid form’ ‘WELCOME’ ‘Have another leaflet’ ‘God loves you now HUG ME’

Yikes, can’t deal with this, I don’t even know these people, quick, quiet seat over there.

The hall fills up. Everyone knows each other and are chatting. I feel isolated and intimidated. How do I even start a conversation?

The service continues and I feel more and more self conscious.

‘Say hello to those around you’ announces the minister. What do I say? Am I looking relaxed? What if they hug me again? Is my autism showing? Oh no, my autism is showing!!!!

The service draws to a close and I sheepishly navigate the small talk in the coffee area and leave feeling isolated and stressed.

Where was God in this scenario? Exactly! The social pressures that autism brings means that God can easily become overshadowed. Any time I have addressed this directly I have received the rather strange response that ‘It is your responsibility to talk to everyone else’ or ‘This is a large church, we can’t cater for everyone’ – rubbish!

Luckily this hasn’t always been the experience. I went to a church for a while that took the approach that ‘we are ALL the welcome team’. Just this slight change of attitude created a hugely positive affect for me. It allowed me to just be me. The overloaded, antisocial, clumsy me that I often am on a Sunday morning. I remember distinctly a particular day. I’d not been to church for a while and wasn’t really in the mood, but went anyway. I was met in the carpark by someone who greeted me like a long lost friend and introduced me to someone I didn’t know. They walked in with me and I sat down in a quiet corner. Another person I didn’t know politely introduced herself and offered to get me a drink. During the service I left the hall and sat in the coffee area as it was a bit intense for me. Without fuss someone asked if I’d like company. I did and we listened to the sermon. Afterwards over coffee I chatted and prayed with someone else. There was no neon ‘pray here’ sign, huddles or hugs. Just a genuine and warm welcome. I left still feeling overloaded and overwhelmed but felt respected and welcomed. This makes a huge impact and is this not something you want to be portraying?

4: Be Sensitive to My Sensory Needs

So I still felt overloaded and overwhelmed? Well yes. Due to autism I have various sensory difficulties. Unfortunately the set up of a standard church service hits all the buttons to set off sensory overload. Bright lights, loud music, lots and lots of information, lots of social interaction can all combine and create such a noise in my head that my brain just says ‘NO!’ In the wider world I have many things I can do to address this. I won’t go to the supermarket if I feel myself getting overloaded – I’ll shop online instead. I may work from home instead of going into the office or Just take nap and sleep it off. How I deal with the church is no different. If I cannot focus on a service due to sensory difficulties I will have to make adjustments. This could range from the extremes of abandoning the service, or attending a quieter service at a different church to simply sitting in a different place.

5: Provide Respite

Day to day life with autism can be exhausting both mentally and physically. The church can provide a welcome haven of rest in an otherwise relentless battle. Quieter reflective services, prayer rooms or simply having a space to sit, chill or have a coffee can really help by providing space to reflect and rest.

Practically speaking as well perhaps you have the time to prepare a meal for a family having a difficult time or baby sit for an evening. Things like this can be especially helpful for families looking after a child on the spectrum.

6: Recognise I can’t always attend the main Sunday service

Maintaining my connection with God and with you is important to me, but if I’m struggling to leave the house then it’s over to you….

‘You must push through and get to church’ is something I’ve been told many times. No! Get off your backside and come to me!

Sorry, I won’t go into a rant here (well perhaps I will….) but assuming you believe that God exists outside of the church building then perhaps you can come to me. A bad episode usually comes hand in hand with a cocktail of mental health problems, anxiety and depression being the most obvious. Please whatever you do don’t mistake anxiety and depression with being anxious and feeling depressed. They are different things. I can ‘feel’ depressed and push through within a few days but depression is a debilitating illness and simply trying to just get on with things can and has lead to serious consequences. If a bad episode hits, the act of attending a big service (or indeed leaving the house) is out of the question, so let me be steered by my doctors and trust that God will meet me where I am and not where you want me to be.

Perhaps you can help by bringing a bible to mine and study with me and pray with me. I can feel connected and supported then without having to sacrifice my health or trying to rush my recovery.

7: Offer Mentorship

At home and at work I benefit from mentorship. Having a point of contact who can guide me and assist me when I encounter difficulties. This is no different in the church, especially if I am serving on a team. The issues I have already described in detail highlight some of the barriers to fully exploring my faith in a church environment, but in a much smaller group with people I trust I have a means to engage at a much greater level. Perhaps you have half an hour a week you can spare to pray with someone on a regular basis? Could you commit to a monthly bible study with someone? It doesn’t take much effort but could be hugely beneficial.

8: Don’t Try To Heal Me

The issue of curing autism is hugely divisive and many people hold extreme views on whether a cure should or shouldn’t be sought. Making any statement about God’s healing relating to autism could cause huge offence and be very damaging. Even looking at the anxiety, depression and sensory elements that I doubt anyone would be against healing, the topic of God’s healing is still tricky. As an aspie I take things literally and if told that by smacking me in the head and screaming ‘Be Healed’ (or a more subtle equivalent) – then I will be expecting it to instantly happen. This hasn’t happened for me. Indeed trying to get God to ‘cure’ my autism has actually been more damaging than helpful. I’m more at ease concluding that God has created me with autism and I can use this to mine and his benefit. There are many positive attributes to autism and many positive qualities. The fact I relate to God and see the interpret the world slightly differently doesn’t make it wrong, it just adds a new perspective. Reading a bible verse I often pick up on details or have questions others simply don’t see, surely this is a good thing?

Now back to the healing. I truly believe that if God is involved in my healthcare then I should trust that the medication and professional support is steered by him. Please don’t expect me to replace my healthcare with faith, let them complement each other. Don’t stop praying, but be respectful and also put your trust in God. He is the one in charge after all so if he wants to provide healing he will do it regardless of whether it comes in the way you are expecting.

9: Change Your Expectations Of Me

The pressure to volunteer and be a part of activities in the church can become intense. There is always a need for volunteers and as part of a church family I am going to want to serve as well. The major barrier for me is the support I receive in doing this. At work a raft of adjustments are put in place and management are accountable for making sure I have the tools and support to do my job well. This is no different at church, only here I am a volunteer.

I was once asked to be part of a set-up team. It wasn’t successful. I need written clear instructions – no, A clearly defined role – no, flexibility if I can’t make the shift – no. In fact if I couldn’t make it I would have to phone around and arrange my own cover, something I couldn’t possibly do if I was having a meltdown. I left, unable to do this task feeling like a failure.

Actually many times I’ve attempted to serve in any meaningful way and encountered the same barriers. The excuse? ‘We’re only human, we all make mistakes.’ Great, but would we use this excuse outside of church. I crashed the plane, but it’s OK because I’m only human. I didn’t cook the chicken properly and gave someone salmonella, but it’s OK because I’m only human. I blocked a member of staff from working because I wouldn’t make an adaptation to his disability, but it’s OK because I’m only human…

In a workplace this would result in lawsuits galore, in the church it simply means wasted talent. I stopped even attempting to serve as a result and I imagine many others are in the same boat. Change your expectations a little and you might find some great talent volunteering for you. Do you really want to stop someone being an asset to your church for the sake of a small adjustment?

10: Signpost Support

There are often times you may not be able to provide support. Perhaps it falls outside what can be practically offered by the church, or perhaps there is another group or organisation that would be of use. One thing that is really helpful is to be directed to someone that can be of help.

One useful website I have discovered for more information on this subject is a document from the Diocese of Oxford titled Welcoming those with Autism and Asperger Syndrome in our Churches and Communities (http://www.oxford.anglican.org/wp-content/uploads/2013/01/autism_guidelines.pdf). It is definitely well worth a read and gives some very well thought out insight.