Alex Lowery speaks about autism

Is the Church autism friendly?

Written on 9th May 2014 by Sylvia Lowery

DSC_0391Alex and I meet a lot of people who are on the autism spectrum or who have autism themselves. This means we are in touch with a variety of people from all different backgrounds. One theme that keeps coming up is that the Church doesn’t always understand autism and those who live with autism often feel marginalised and misunderstood. This is a real sadness to Alex and me because we feel the Church is a place where individuals with autism and their families should feel welcome and supported.

Why is this the case and what can be done to help the Church to have a better understanding of autism?

When a family has a crisis such as someone is very ill in hospital, everyone rallies round, meals are made, support is offered in a variety of ways. However when someone has a chronic condition or autism people forget to care or support. John Gillibrand a Vicar in the Church of Wales, whose son has severe autism, says, in his book ‘Disabled Church – Disabled Society,’ “Major illness or disability within the family can be a source of stress which is hidden from public view. Short-term illnesses are often met with a good deal of sympathy and practical help. But it soon runs out in the face of long term disability; the family may be thrown back on their own resources, and faced with a major drain on time, money and energy. Regular practical help and emotional support will be much needed…… Mental illness, personality or behavioural problems tend to make people feel uncomfortable…….The family which needs extra support may well be the one which gets most isolated.”

Individuals with autism often appear to feel misunderstood and become afraid of attending Church even though they may have been brought up in the Church and miss being part of a Church. Karen Maguire, who is organising an Artists of Autism Exhibition in Wakefield, agreed to be interviewed about her experience of an individual with undiagnosed autism who grew up in a Church. She was diagnosed with Asperger Syndrome at 30. Karen shares her story here.

Here are the questions and Karen’s answers.

Did your parents take you to Church as a child?

Yes, from birth.

Did you like Church?

I loved it, as a child.

Did you find it hard to be accepted as a person with autism?

I wasn’t diagnosed until the age of 30 and I had already stopped going by then. As a child like I have found with most sets of people, the quirky odd before is more accepted, it can even be cute and loved. As an adult and you still behave the same it is not accepted, it is not ok, it is not understood.

Do you still go to Church now?

No, sadly.

If not why not?

I was unsupported when my husband left, I was made to feel unwelcome and ostracized.  This was hard to take as I had classed people there as close friends and family. Rumors were spread about me as to why he left and each time I tried to go there since it was clear they were believed, by people who I assumed knew me better than that.  People who I loved turned their back on me; I was 21 with 2 babies and felt alone in the World, I was devastated that my marriage had fallen apart. I sank into a deep depression.

Did you find it hard to follow a sermon and keep still as a child?

I would spend most of it drawing, as with a lot of girls on the spectrum I was more introvert.  I remember when it came to doing plays in Sunday School people couldn’t understand why I couldn’t take part – they made it clear they thought I was strange. I found the language used didn’t make sense to me all the extra big words that I never heard outside of the church building.

What could have been done to make it easier?

Growing up with a diagnosis and the church having a clear understanding and acceptance of it.

Do you still believe in God?

YES! 😀

Do you want to go to Church now?

YES! I miss it; there is a huge dark hole in my life that nothing else will fill.

 

What stops you from going to Church now?

Anxieties. The fear of starting a fresh somewhere where everyone already knows each other and having to join that as a newbie fills me with dread.  Unable to go to the church I grew up in as I don’t feel welcome and they seem to be moving further away from God.

The fact that I am not comfortable praying out loud and doing actions to songs – I don’t know if this will be accepted or understood.

Having to explain that I don’t want them to pray for a cure and coping with their reaction to this. (been through this once before)

When I tried a new church I have shown people a DVD of my daughters Autism to help them understand, unfortunately they couldn’t get past the ‘this is naughty behaviour, a child who needs discipline’ opinion.

I know I won’t feel comfortable at any church and it’s finding the right one, if there is one.

The wonderful news is that Karen has found a Church where she can feel at home and her husband Craig has become a Christian. You can read about it here. 

Some simple advice to help those who have autism

1. Loud music and a lot of loud speakers can be terrifying to someone with autism.

2. Lots of people talking at once will only confuse.

3. Metaphors can be taken literally. What would you make of ‘I am the door’ if you took it literally. Use clear concrete explanations to explain what is being said.

4. Individuals with autism find it hard to believe in something they can’t see. The concept of God can either seem frightening or just unbelievable.

5. A meltdown isn’t a temper tantrum. It is a state of extreme anxiety.

6. A lack of eye contact or social skills is part of the autism spectrum.

7. Many individuals with autism are not diagnosed; remember this when you are reacting to someone who may appear socially awkward.

8. Provide a quiet space for someone with autism to escape to.

9. Remember autism is a hidden disability. Often it takes a lot of effort for an individual with autism to keep everything together; don’t dismiss the difficulties.

10. Ask what you can do to help. It may be something as simple as taking the siblings somewhere to give them a treat. But just listening and believing how hard it is will be greatly appreciated.

 

If you would like Alex to come to speak to your Church to try to make Churches a better place for individuals with autism please get in touch.

For a great checklist on how to make your Church autism friendly see here

To read an article about how Alex came to believe in a God he couldn’t see here.

10 thoughts on “Is the Church autism friendly?

  1. Yorkshire Pudding (Karen) says:

    its brill! Hope it gets the message across 🙂

  2. donna says:

    Some good tips there. Hope Karen find a church that helps.

  3. Val Ely says:

    My son was rarely understood as a child. Church was always difficult. In the end we left because adults bullied both him and me. Many churches are full of intolerant people.

    • Sylvia Lowery says:

      Val I am so sorry to read this I hope and pray that this short article will help Church’s to become more understanding. We belong to a Church and we have always felt supported and cared for.

  4. Edgy Spirit says:

    Fantiastic article.

    I’m an Aspie clining on to church by my finger nails. There is a lot that churches could do to be more autism friendly.

    I’ve been diagnosed late in life. CHurches need to anticipate needs not wait for Aspies to turn up. (WHat if one came to visit next week)

    I hope to share some of when I meet with the vicar in the near future. Top of my list is a quiet place.

    ES

  5. Gordon says:

    Karen’s experience and feeling are the same as mine. Contemplating going to a new church on Sunday, but the last time I plucked up the courage the experience put me off for a year.

    • Sylvia Lowery says:

      Hi Gordon thank you for your comment. I’m sorry that this is the case. Karen has now found a Church that she feels comfortable with after many years of feeling unable to attend. I hope you can find somewhere as well. Could you ask to speak to the minister in advance and take some of these blog posts to explain how you need support.

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Organisations Alex has worked with

  • Autism Cymru
  • Chester University
  • Glyndwr University
  • National Autistic Society
  • St John's Ambulance
  • Welsh Government

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