Is It Ok to Honor My Autistic Needs?

“We are now doing pre boarding for anyone with disabilities.”

I sat for a second. Disability. I am autistic. I have a disability. For that brief, wondrous moment, I didn’t overthink it. I got up and went to the flight attendant. I said, “I am autistic, may I board now?”

She happily ushered me on board. I couldn’t believe it. There was a person using a wheelchair in from of me, a person using a wheelchair behind me. We slowly made our way on the plan. I went all the way to the back and found my seat.

It was a surreal experience.

As I sat in my seat, I gleefully texted my autistic friend to tell her what I’d done.

I thought about how much my life has changed since learning I am autistic. How much growth and expansion. Self-understanding and self-compassion.

And then I thought of my mother. She died 8 years ago from ovarian cancer. She fought it for 6 years, going through all sorts of chemotherapies. I lived with her for many of those years. I witnessed the ups and downs, like when radiation caused her legs to swell with lymphedema, making it difficult to walk.

Even with her difficulties, she refused to use a handicap parking space. She was given a handicap pass by her doctor. She wanted the parking space to be used by someone who “really needed it.” It was maddening, because I usually ended up dropping her off by the entryway to the hospital and then spent a half an hour trying to find a spot.

One time I couldn’t find her in the hospital because she was sequestered in the bathroom because her urine bag had started leaking.

As I sat on the plane, I thought of my mother. I thought of what she would think of me now. She died before she could know I was autistic. I’m not sure she would have believed it.

"Mom Entwined with My Autistic Identity" Collage by Jackie Schuld

She always knew I was different. She told me she worked “harder” with me than my brother or sister. Harder to teach me how to be. Harder to try to live in the way she felt would honor God and the “gifts” he had given me. She saw me as exceptionally smart and felt I had a duty to use those gifts to help others. It wasn’t hard to get me to use my intelligence - it was hard to get me to be social and “kind” in the ways she felt was appropriate.

This makes it sound like my mother was a negative person. She was not. She was a wonderful human being who always did her best. She did her best to pour love into everyone around her. She had a Christian perspective, and so she also did her best to ensure her three children followed Christian values and belief symptoms.

As an undiagnosed autistic though, it was difficult. Many of the rules and expectations didn’t make sense to me. Many of the hypocrisies of the church and its leaders were also glaring.

I also couldn’t quite get my mind to function the way my mother wanted it to. I would point out things I would notice about others or share my opinions, and she would instruct me how to think kinder thoughts. How to give people the benefit of the doubt.

She was trying to make me more “Christlike.” She didn’t realize she was actually teaching me to disregard my own feelings and thoughts. She was teaching me that my intuition didn’t matter if it wasn’t in line with Christian cultural norms.

I don’t think she would approve of me boarding a plane before others.

Even if by some miracle she accepted me as autistic, she would certainly feel I would need to put others before me. This is the Christian way. To serve and sacrifice for the sake of others. Well, at least the way my mother understood Christianity. I’m not sure she fully had the chance to develop her own interpretations and views of the Bible and Christ. She accepted what she was taught, which is full of toxic cultural beliefs that are not necessarily what Christ taught - they’re just the interpretations that others have made.

I guess what I’m trying to get across is that I do not blame her for her way of being. I appreciate my mother and how much she tried.

AND it still has lasting impacts on my life. I am still slowly relearning how to listen to my emotions and needs. Learning what it means to be autistic, having unique needs, and honoring them.

What it means to have a need and have it be met before someone else’s. Like getting on the plane first.

When I thought of all this as I sat on the plane, I cried. Luckily, I was wearing a mask. Processing my past is emotional work, and it often involves tears. I cried until I fell asleep on the plane.

When I woke up, I felt better. That is how it often works, an emotional wave needs to flow through me. And then I have full access to my thoughts. To realize that I can have needs and choose to meet them. That I don’t have to silently suffer just so others can go before me and keep my place in line. That getting on a plane before others isn’t harming anyone.

This is part of the process of being a late-identified autistic. It’s rethinking so much of the world and making choices.

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