Autism Acceptance Week

World Autism Acceptance Week takes place 2 to 8 April 2024. The Revd Verity Phillips shares this blog about her diagnosis as an adult with autism.

For fifty-eight years, I have lived an unintentional lie. Eighteen months ago, I was diagnosed autistic. It was my own idea to get myself tested. Afterwards, I found that all those with the right training (education, medical, etc.), thought as much since they knew me when I was young. Would my life have been any different if I’d known?

It all came to a head when a head injury recovery led into much more exaggerated symptoms instead of clearing up. First I developed head-shakes and a foreign accent in response to loud sounds and crowds. Then the stress I was experiencing as a minister seemed to have made a latent autism more exaggerated, with a clumpy walk, arm waving, and child-like emotions, and I grew afraid of where this was leading. Some even encouraged me to consider whether early retirement would be appropriate, not realising the implications of this.

Diagnosis was the start of a process which began to effect a change that is in many ways liberating. It enabled a Church which felt like it had had enough of me to recognise what was happening, and to change how it responded. I will be forever grateful.

Before, in station after station, I would start well, yet become increasingly unhappy. I couldn’t understand the reactions I received from the very people who should have been keeping an eye that all was well. I experienced colleagues as critical and rejecting, as if I were a threat, which made no sense. I know I look young, but didn’t know I also sound young, so it felt as if I were being treated as inexperienced. I felt increasingly inadequate, less as a minister than as a human being. I didn’t seem to belong in the world, never mind the Church. I’ve since been advised that people can feel intimidated by abilities I didn’t know I had, and a bluntness which I thought was just honesty, even when I might be feeling very insecure. I generally thought I could do my work okay, but it seemed as if I wasn’t liked by key people in authority, and I seemed to be excluded rather than included. I kept trying to be helpful, and to please, and all this did was aggravate the situation. So then I’d develop a chip on my shoulder and resent the treatment I came to expect. When I was described in ways which sounded like the complete opposite of my self-understanding, this was devastating, especially when I was trying to help people recognise how to get the best from me.

Now I know that I have oversensitive hearing, and that all my senses get overstimulated, which overwhelms my brain, and thus caused all those emotional ‘meltdowns’ – normally expressed in shortness until I could escape, and then in tears once I was alone. Reducing the stimulation with earbuds etc. has transformed my life. Now I know that it’s ok (normal for many autistic people) that I don’t find socialising easy or ‘fun’, but still like to spend some time among people. I just prefer situations where I have a role I can follow. Now I know to breathe deeply in situations which scare me, to calm my neurology. Now I know why I like spaciousness, and for things around me to be neatly placed and organised. My brain is such a muddle that I need a certain amount of order.

The best thing of all, I think, is discovering that there are things people value about me now. That I do have skills and abilities to offer; they’re just not the kind of things you are taught. I’m liberated to be myself, and I find people like me better now I’m not trying so hard to fit in, with layer upon layer of the masking which was such an effort to maintain. I move to hymns as I sing them. I wear things I feel comfortable in rather than conforming to expectations which are now old hat anyway. Those who know me tend to be more understanding. I’ve learned to “stim” to release energy in tense situations. I don’t feel so frightened and confused as my baseline emotion.

Two years ago, I was ready to give up on my life. Now I’m so happy and so grateful, I could burst!

You can find out more about autism here from the National Autistic Society.

Prayer

Loving God,

You made us all in your image, and that’s amazing. You love all that you have made, including those of us who feel at times like badly-made mis-fits.

We may be sad that we can appear rude or selfish when we don’t mean to be, especially when we’re focussed, anxious, or overwhelmed.

Often, we’d like to please; and it hurts when we cause upset.

Where people misunderstand one another, you understand our differences, and the complex interweaving of abilities and needs in every human being, and rejoice in them.

Forgive us when we think in “one size fits all” terms.

Help us not to lose ourselves as we try to fit in.

Help others to notice the qualities we could offer and make space for their expression so that we might all be enriched together.

When we feel threatened, or challenged, help us to find the courage and time to explore that together, so we can discover your truth at the crossover of our perspectives.

Help us to use life’s difficulties as points for growth; as opportunities to recall how you transformed the apparent defeat of crucifixion into the victory of resurrection.

Help us to understand ourselves well enough to hold ourselves in check, and to hold back from dominating when we have a lot to share; to wait for the invitation.

Because we really do want to help you as you build your kingdom of peace and justice.

Amen.