Autism: Good, Not Well

We spend maybe two hours together. Most of that time, I do not speak – but if the circumstances are just right, and they ask the right questions at the right times, I may have something to say.

I tell them I have an expressive language disability; that I struggle to make the connections between my thoughts and my words. “You are doing really well right now,” they tell me. Uh-huh. How do I explain this to them when I can’t find the words.

I could speak in that moment because there was silence. I could speak because they asked me a direct, as opposed to an open ended question. I could maybe speak because instead of listening, I was working to form my thoughts together, while my heart was pounding, because I had an opinion about what was being said – and felt compelled to speak… and there was silence, and they asked for my thoughts…

We have life group at our house this year. We were the only ones with the space, and no children/grandchildren running around.

I like having life group at our house. I am comfortable here. I know my space, and am not distracted or anxious over being in someone else’s home. I am still anxious, but not so much.

I like that I don’t have to travel to get to life group, or to consider that I might not want to go (since people are coming here.) I like not having to feel the motion sickness from being in the car, or parking on a hill.

That I make the food, and serve the tea, makes it easier for me. I know the ingredients, and can get what I need to make my own tea. At other people’s homes, I can’t do that, so usually take nothing.

Being my own furniture, I can sit on it how I am comfortable, without worrying that I am doing it wrong. It is my house after all.

I let them in. I try to visit, I try to speak, I prepare food for them, and try to make them feel welcome.

Sometimes I can’t speak – but they know I am quiet, and don’t say anything.

They tell me I am doing well, and it frustrates me because I know it is not accurate. I know it is not true. Maybe I seem “well” to them on the outside, but they do not see the effort it takes to get there.

Do they know, for instance, that I spend the three days prior to life group tidying, cleaning, baking. Maybe it could be done in an hour or so, but my anxiety won’t let go. I clean, and tidy, and clean again, all the time worrying that I am not doing it right… that I am missing something.

I haven’t the energy for this, but I push myself through. Exhausted and fearful, yet I want to do this, so I push through.

As the minutes grow closer, I start pacing the house. What if they don’t want to come? What if they don’t like me? What if I can’t talk? What if I say the wrong thing?

It is my childhood birthday parties all over again, and my stomach feels sick.

The two hours go by fast. They know how to talk, even if I do not. My hands are sweaty, and I am shaking, but they do not know as I am scrunched up on the couch, or have picked up an animal to pet.

Two hours. Two hours and I am praying the whole time that my husband will take care of them. I have made the food – I pray he will offer it. I cannot. I have set out everything for tea. I hope he will keep the pot filled. I am frozen.

At the end of those two hours, I hear the words repeat in my head, “you seem to be doing well.” As if I am not sick. As if my diagnosis was wrong. As if I won’t spend the next four days recovering before I start the pattern over again.

I don’t believe they disbelieve me. I know they know I am an anxious person, at the very least. I know they know I struggle a lot of the time. I know they know I have trouble socially, but, “you are doing well.” It is not true.

Saturdays were my productive days until life group started again. It is okay, I guess, that the days have switched, but I feel bad. I can hardly move Fridays and Saturdays. On Sundays I go to church, but I am not ready to socialize yet, and so want to hide, and struggle in so many ways while I am there. Mondays… I might get something done, but it is not enough. It is never enough.

Four days, and on the fifth, I push myself to start cleaning again. Tuesday, Wednesday, Thursday, and they come again. I am glad they come.

Maybe for two hours, I do good. It takes a week to recover, but I do okay.

How many hours in a week? 168? And for 2 hours, I might do okay.

I have done good, but understand, I am not well.