Saturday, March 18, 2017

Honest Lent: "Seek First God's Kingdom" Doesn't Work If You Have Autism

Mushroom cloud. Image source.
For Honest Lent, let's look at Luke 12:22-34.

In this passage, Jesus teaches his disciples "do not worry." Specifically, do not worry about food or clothes. He says God will take care of you because look at how God provides for the ravens and flowers, and obviously you're so much more valuable. I won't get into the fact that food insecurity and malnutrition are real things that exist in the world- which proves that no, God does NOT always take care of people's basic needs. (Jesus makes a promise here which is NOT TRUE.) What I really want to talk about is verse 31: "But seek his kingdom, and these things [your needs] will be given to you as well."

This is what I was taught in church. Seek God first. Don't focus on your own needs. Follow God, put others before yourself, and then God will make sure your needs are met too.

Let me tell you something: This doesn't work if you have autism.

As it turns out, I have different needs than other people. And I've only realized this in the past few years; I wasn't diagnosed with autism until I was in my early 20's.

For me, the biggest example of this "different needs" thing is related to sound. As it turns out, other people are hearing sounds not nearly as loud as I hear them. For most of my life, I had no idea. I had lived 20+ years baffled over how other people can tolerate such awful awful unbearably loud sounds. Finally I found this explanation: My sensory system is such that sounds are much louder for me than for other people. For me, those loud sounds literally are unbearable. They are literally painful.

So that means I have needs. Like the need to not go see a fireworks display. But nobody ever told me "you know your own needs better than anyone else, and those needs are real things that other people need to take seriously." I believed I was being unreasonable if I asked for something that was different from everyone else. I believed that it was just me being weird and if I went to therapy and tried hard enough I could become "normal", so my sensitivity to sound was my own fault and not something that other people need to take seriously.

I can't blame this all on the church. In society in general, there's so much ignorance about mental health and disabilities, and people aren't taught to take people at their word when they claim to have some invisible condition that requires special accomodation. But the church's teaching about "don't focus on your own needs, just obey God and help others and then your needs will magically be met too" certainly didn't help things.

So I thought it was wrong to ask for special treatment. I thought it was "selfish" to ask the adults if I was allowed to sit out of some activity that was going to be overwhelming for me in terms of sensory stimuli or social interaction. Actually, I didn't even know it was an option. We go see fireworks on the 4th of July because that's what we do on the 4th of July. I didn't understand that it was an activity that was intended to be enjoyable, and that other people actually enjoyed fireworks. I had no idea. And then one year my mom said I could stay home if I wanted, while the rest of the family went to the fireworks- like, YES! OF COURSE I want to stay home. But I wouldn't have thought to ask for that on my own because I didn't understand that my cowering in pain was completely different from how other people experience fireworks. I had no idea I had different needs. Real needs. Real pain. Not just "me being weird."

If you're neurotypical and not disabled, then maybe the concept of "don't advocate for your own needs, they will naturally get met when you focus on God and helping others" might work. Because your needs are obvious things that your loved ones can relate to. It will be easy for others to see when your needs are not being met, and they will step in and help you.

But that doesn't work for me. If I don't say anything, then people don't *get* that loud sounds are unbearably painful for me. For most of my life, I didn't even *get* that. And even people who cared about me and wanted to help didn't know how, and treated me in ways that actually turned out to be harmful. I wonder how things could have been different if someone had told me I am an expert on my own needs and I have a right to advocate for myself, to tell others what my needs are and insist on it even if they try to ignore me. I wonder if that's even a realistic thing to imagine- even if I did get a diagnosis as a child, would any adult actually give a child the authority to act as an expert on their own needs and choose for themself whether they were able to participate in various activities?

I used to act uncertain when I tried to communicate about the loud-sounds problem. I didn't have the language I needed back then- I didn't know it was about needs and pain; I thought it was me being weak and unreasonable and selfishly asking for special treatment. I used to ask instead of tell. My tone of voice showed that I believed it was an unreasonable request, and so people didn't take it seriously- or they made suggestions based on their total ignorance of the problem, and I treated those suggestions as more important than my "silly" sensory issues (which, I thought, are my own fault because I could choose to go to therapy and become "normal"). I used to end those conversations with "I don't know if I'll be okay with that or not, but ... okay."

But now I've learned to say it this way: "Loud sounds are extremely painful for me, so if there are balloons at the party, I will not be able to go." Like it's just a fact of the universe, just a simple cause-and-effect, and I'm not going to entertain any suggestions about how I should "get over it" and "it's not that bad." I'm very much "leaning on my own understanding" here- nobody told me "it's perfectly reasonable for you to avoid things that make loud sounds, because they cause pain to you in a way that's completely different from what most people are experiencing." I figured that out on my own, and it's not like I can ask other people to confirm it- they don't know what I'm feeling, and I don't know what they're feeling. I've decided I don't need anyone's permission to advocate for myself. If I say this is what I need, then I have the right to tell people and expect to be taken seriously.

I used to "seek first God's kingdom," but God did not take care of my other needs. The only way to make sure those unique needs are met is if I stand up for myself, if I communicate to other people that this is a real thing that needs to be taken seriously. Any hesitation, any "humility", any "putting others first" on my part, when coupled with the fact that other people can't relate to what I'm feeling, gets interpreted as an indication that what I'm asking for isn't a real need that other people should care about.

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