Communication

I don't know if it's because of who I am, because I'm autistic, or because I grew up as an undiagnosed autistic person, but I really struggle to communicate my needs. Sometimes I struggle and I endure until I can't anymore. Until I'm bent and broken, sick and on the ground. Sometimes, even then, if I'm around people who aren't family, I would crawl on the ground, digging my fingernails in the earth until they break, instead of asking for help. Asking for accommodation. I don't think I deserve it. I look around and see other people walking with ease and think that I should be like them. I should be able to do what they do without any accommodation. That it isn't fair to ask for more. That I would gain some advantage, when in fact, an accommodation would only place me on even ground. So I go on struggling. 

Why am I writing it? Partially because I struggle. I really, really struggle. I'm in burnout. I'm spent to the point that I'm almost constantly sick. An ugly UTI at the beginning of this year lasted more than two months. Now, for over a month I have been fighting with a cold. I am tired. A tiredness that goes as deep as my bones, that seems that it would never go away. I'm overweight, I overeat, and I'm way too sedentary for my own good. I should exercise, keep myself healthy, but I'm too busy keeping myself alive. I'm well aware that I'm likely giving away years of my life just to survive now but what can I do?

Yes, what can I do? My husband helps me as much as he can. My parents help, too. Could they do more? Maybe, but it gets down to that blasted communication. I don't know how to ask for help. I don't even know what to ask for.

As for outsiders, I don't think anyone else is even aware I'm struggling. How could they be, when I asked for nothing? How could they be, when I never complain? 

Work is horrible. Not the actual work I'm doing, but being at work, handling the lights, the constant noise, the assault of smells, the people. Yes, the people. Being around them and all their emotions is the worst thing I know. Especially when I feel like a sponge ready to absorb everything and carry it with me. I'm too empathic, but not in a helpful way that lets me connect with others. No, in a way that makes me want to run and hide from everybody. 

I have the possibility to ask to work from home. I have no guarantee it would get approved, but as my sister said, at least I would know where I stand. Still, I didn't. Why? Partially, it's anxiety. Yes, talking, and especially requesting something for myself, gives me anxiety. 

But it's more than that. It's that deep down I think I'm just a fraud that invented her struggles. I believe I don't have the right to ask for it. I believe I would gain an unfair advantage. So I imagine people saying all these things about me. I imagine them judging me and denying me. I build conversations in my head, think over and over again how to formulate my request, my answers to accusations that might never come. I convince myself that I can endure a little more, just a little more. All so I won't be judged, all so I won't face my judgment. 

I hate my internalized ableism. 

But even for those who knew all their lives that they were autistic, who learned about their needs, and who know they have a right to prioritize them, communication is sometimes difficult. Or maybe not exactly communication. We, autistic people, can easily communicate with each other. But when it comes to communicating with neurotypicals… sometimes we have trouble making our needs understood. I don’t know why. One would say that a person who always speaks their mind and is very direct in expressing themselves and their thoughts will be easily understood, but this is not the case. Even when we say “I need this because of that,” some people do not understand us. They think we mean something else, or maybe they downsize our need (here could be an entire debate, but maybe that would make the subject of another article). Whatever it is, misunderstandings often occur between autistic and neurotypical people. 

I was watching a TV show the other day, and one of the characters is autistic. She had this big fight with her girlfriend because when she communicated her needs, her girlfriend failed to understand that that was the extent of her capacities. To me, she communicated clearly. To her girlfriend, apparently, it wasn’t clear enough. 

This kind of thing happens often in my life. When I say that something affects me badly, when I say that I’m in pain or bothered by something, people rarely understand how bad it actually is. My parents didn’t understand what I’d suffered through. To people outside the family, I don’t even know if I bothered explaining. My husband is the only one who understands, my best friend.

But let’s get back to my parents for a while. In a recent conversation with my mother, she talked about how I didn’t have problems communicating when I was younger, and that I had friends. Obviously, interactions between children are far less complicated than interactions between adults, and this plays a part. And it’s true that why I wasn’t Miss Popularity, I wasn’t completely lonely either. 

But there’s a lot to the picture she didn’t see. All the bullying, the rejection I suffered until I was finally accepted. How gaining those few weak friendships I had felt like a fight, like pushing my way through undercurrents of water. How I had to adapt and change myself so I would fit. Wrongly, inexactly, but I was finally in. There were always parts of me I kept hidden because if shown, they would’ve been ridiculed. 

The girls who ended up being my friends were my neighbors. We had no choice but to be each other’s company if we wanted company. We grew up together and became friends not because we were alike or we liked each other, but because we were always together. Surely, over the years some of them maybe started to like me and I liked some of them. But our friendship started with rejection. Or better said, with their rejection of me, and me changing so they would accept me. Without me making an effort to fit in, I would’ve never had friends. 

Maybe it would’ve been better. I would've been lonely, but at least I would’ve stayed myself, so later I would’ve had the chance to make genuine connections. Maybe I wouldn't now feel the need to hide. I wouldn't have to fight with that part of myself that tells me to be hidden is to be safe. I would've stood in front of the others, accepting mockery or an embrace on equal measure. 

But how could a young child be so insightful? Back then, I wanted to belong, I wanted to be like the others, I wanted to be accepted. I wanted people to respect me and not make fun of me. I couldn't see that I was sacrificing temporary solitude for a long time alienation from myself. I couldn't see that I was winning people while losing me. 

How can autistic children end up differently? Obviously, I cannot give a definitive answer. But if there's one piece of advice I could give them, that would be to love and accept their children exactly as they are, to never try to change them (I know you fear that the society will not accept your child, but the first step to change that is to accept him yourself), and not to put pressure on them to make friends. Likely, your children will never have many relationships, but those they will have will be genuine and true.