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, 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.