In his sermon Friday evening at the Synod Assembly, Bishop Ullestad told the story of a how a single mother with a child with a sensory disorder found welcome in an ELCA congregation.
The story had a happy ending, but unfortunately her experience of facing stares and judgment before that is not unusual for parents of children with similar issues.
I want to tell you a story about my son, who was diagnosed with Asperger’s Syndrome at age 16. This event took place when he was 12, before we knew what was wrong. It did not happen at church but it illustrates how important it is we never judge situations we know nothing about.
We were on a boat tour. We were on vacation and being away from home and routine was already a big stress for him. He wanted a pretzel and we waited in line for a long time but when we got to the counter they were out of pretzels.
What I know now is that people on the Autism spectrum think it terms of black and white. We didn’t know about the diagnosis but from a young age, my husband and I learned to be very careful about promising ANYTHING to Isaac because once his expectations were set, if what he expected did not take place he saw it as a crushing disappointment and a betrayal.
So the stress of the day and the disappointment of not getting the expected pretzel got to him and he broke down in tears. It was not a tantrum; it was broken-hearted cry as if he had lost everything important to him.
Now to strangers watching this, it was a 12 year old boy crying because he could not have a pretzel. Which, on the face of it, is absurd. And my face still stings from the memory of the stares I faced on that boat. I could not escape. I had to sit there, trying to comfort my boy, and receive the judgment of strangers who thought I was responsible for raising a spoiled brat.
But they knew nothing of what we went through as a family.
They didn’t know his father had died less than a year ago. They didn’t know we were struggling as a family to figure out why everything seemed so hard for him. They just saw a boy crying over a pretzel and figured they knew what was going on.
Let’s not be like those people on the boat in our churches.
We know a lot more about people with sensory disorders now (which many people on the autism spectrum suffer from). In the last several years, churches have become more sensitive to making worship more accessible to people with physical disabilities. The next challenge is making worship more accessible to people with mental and neurological challenges.
This is a very handy download from the Oxford Diocese with suggestions of how to keep people on the Autism Spectrum in mind when it comes to worship and churches.
Here is an excerpt from the download:
Quick Low Cost Things to Make a Difference for People with an ASD and Everyone in your Congregation
1. Check the lights in each room, especially fluorescent ones – any flickering ones?
Please replace them. (This also helps people with epilepsy)
2. Noise levels. Is there anything unexpected in today’s service/meeting?
Can it be changed easily? If not, can you warn us? (This also helps people with mental health conditions and those who are deaf)
3. The building. Do we know what it looks like, and what the layout is like today? Is information on a simple website, perhaps? (This also helps people who have visual disabilities or those who are nervous of attending somewhere new)
4. The Order of service – really clear instructions for us e.g. where to sit, when to stand and sit, what to say at each point? Either write it down, or get someone to be with us to quietly say what to do, please. (This also helps those new to church). Different color paper may help some to read service sheets, e.g. light blue paper rather than white.
5. We are very literal, and our minds may see pictures, not words.
If you need to use complicated language, can someone be available to explain it afterwards if we need it, maybe by email? (This helps those who find reading more difficult, too, which is one in every five people in the UK)
6. Physical events e.g. shaking hands? Water being splashed about?
We may find this physically painful, as we’re hypersensitive. Please warn us what will happen, and avoid physical contact unless we offer first. (This also helps those with arthritis, and those who are nervous of being touched because of memories of violence)
7. Rest area – somewhere quiet to go if we need to, please.
Or don’t worry if we wander outside for a while. . (This also helps people who have chronic fatigue illnesses, and mental health conditions for example, as well as those with back problems who may need a quick lie-down on a bench)
Be aware we find it difficult and exhausting as we cannot ‘see’ or hear you that well. Our body language can be different to yours, and we may not make eye contact. Please don’t think we’re rude. (This also helps people who are more introverted).
9. Be Clear and Accurate. If you say you’ll do something, please do it.
Those on the autistic spectrum will always find it very distressing if you promise to help and don’t, or promise to phone at a certain time and don’t, or if you use expressions like “I’ll be back in five minutes” when you mean, “I’ll be back some time this afternoon”. If you need to change arrangements, please just let us know.
10. Support: Find a quiet caring person to be aware of us, someone ready to lend a little assistance if we need it. Brief them well, and please respect our confidentiality and privacy.