Living with Autism in Church

My experience

I was diagnosed with autism at the age of 30 in June 2022. My first reaction was to feel validated. I had grown up trying to make sense of a feeling of being different to others, because I was born with a serious heart defect that has needed multiple surgeries.

At the age of 20 I tested positive for DiGeorge syndrome, a chromosome abnormality often associated with heart defects.  This led to a focus on my mental health, as people with DiGeorge syndrome are more prone to mental health issues, which did happen as the years went by. However, I did not pursue an autism diagnosis until my brother suggested it. My understanding of autism was then much in line with general stereotypes, and autism was never suggested by anyone at school or any other services I had encountered. When the diagnosis came it was a surprise, but also a relief that I had an explanation for why I felt so different.

This was shortly before being invited on an Alpha course, coming to faith in Jesus and starting to attend church. I found a supportive community and quite easily made friends. The recent diagnosis meant that I was still trying to make sense of autism and what the diagnosis means to me in the context of also being new to Christianity and wanting to learn more about it. I learned early on that your identity is in Christ, which is great, but I have struggled to reconcile that with wanting to learn more about autism and trying to establish boundaries in church life. I also must balance all that with working full-time, given that only around 20% of autistic people are in any form of employment at all.

How autism affects me at church

The National Autism Society says:

“Autism influences how people experience and interact with the world. It is a lifelong neurodivergence and disability. Autistic people are different from each other, but for a diagnosis they must share differences from non-autistic people in how they think, feel and communicate. 

Being autistic means you may feel things and react to them differently to non-autistic people. You may find socialising confusing or tiring, and you may become overwhelmed in loud or busy places. You may have intense interests, prefer order and routine, and use repeated movements or actions to calm yourself or express joy. You might mask your discomfort to fit in, which can lead to mental illness.”

Given these differences in feelings and reactions, I have found it difficult to be vulnerable with people. I find when there are miscommunications I receive most of the blame, even though I try very hard to adapt. I am frequently worried about how I come across or if I have said the right thing.

I take things literally and this does affect me when it comes to interpersonal relationships, as sometimes I struggle to ‘read between the lines’ and know when to take what is being said seriously. Often, I don’t understand the context of a conversation and so react in an unexpected way. I then need to decide how to explain autism without going into too much detail, and I feel that I constantly have to explain myself. I do mask, which leads to feeling false and wondering if people know the real me or an act I am putting on, which causes an underlying fear of the real me suddenly being discovered and rejected.

Suggestions for helping

It will never be possible to accommodate everyone’s specific needs, so what is more important than specific adjustments is the heart to include people. Then it becomes less of one side feeling as though they are doing most of the work and more of a conversation alongside each other and listening to other points of view.

Understanding the strengths of autistic people can be important. Though we face different challenges, we may also have gifts that are different from others, so unlocking our strengths could be a blessing to both us and the wider church. Without this it likely we will always feel we are having to put in most of the work for good relationships. [Editor’s note: Tom is well-read, and a clear thinker and writer, though that does not always come through in conversation. He has shown great determination and perseverance moving to a new job, city and church.]

I have some specific suggestions about how the church might help me in my journey to feeling connected and playing my part. However, bear in mind that not all autistic people are the same, so others may have different needs.

How the church can help me in the meeting.

·       Some bullet points outlining the sermon beforehand would help me engage with it more.

·       Being able to use a quiet space such as the small meeting room. I might never need to use it but someone else with different needs might find it useful.

How you can help me in conversations.

·       Autistic people generally do better with object-based conversations, such as "tell me something you have learned recently?" or "do you have any hobbies at the moment?" than general social-based conversations, such as "how was your weekend?", so I will have to make more effort with this type of conversation. Please bear this in mind.

·       I communicate in a context-heavy way and don’t always read between the lines. That means I may ask more questions about what you are saying, to help me understand. Please be patient and answer my questions, even if you feel they are unnecessary.