The Importance of Truth Telling in Family Dynamics

Being called “high functioning” with autism feels odd to me because how well someone does often depends on their environment. This label can give a false sense of security and, if not considered carefully, might make someone feel separate from or even above others with disabilities. I’ve always felt fortunate to be able to drive, find work, and fit in when I need to. I’ve tried to support others and help people better understand the disability community. Recently, I haven’t felt held back or treated differently because of my disability, at least not until this past week. Now, looking back, it feels like I’m facing a puzzle with missing pieces, and I’m not sure where to start.

I’ve written before about always feeling some distance between my siblings and me. I thought we’d grow closer as we got older, but the gap seems to have widened. I often felt tension and would call my brother and sister to see if they were upset with me. I was often left feeling hurt and confused. They usually laughed it off and said, “No, or I’ve just been busy.” I’m not sure I ever fully believed them, but I wanted to. Things came to a head this past Easter, so I spoke with each of my siblings separately to try to understand what was happening. My brother indirectly referenced that my autism and social anxiety made it harder for our family to host big gatherings and for him to enjoy them. He also mentioned wanting certain family members at his future wedding, even though he thought I might not want them at mine. That comment about wedding guests really confused me. I know I don’t get to decide who’s invited; I can only choose whether to go. These things weren’t said in private, and the harshest comment was made in front of others. We didn’t resolve anything in that conversation. The next talk, with my sister, was even harder. I felt pain and confusion, and I barely recognized the person I was talking to. Just as I had uncovered my brother’s resentment about family gatherings, I realized there was another hard truth coming out in this conversation.

She said something like, “I want to do what I want to do when I’m in the city, and I don’t want to be limited.” Then she added, “I assumed it was best to spend one-on-one time with you.” After that, she listed activities I’d done many times before. I just sat on my bed, stunned. One sibling was deliberately leaving me out of events, and another was quietly resenting me. I spent time working out, journaling, and thinking while listening to music.

Even though I’m the oldest, I’ve often looked up to my younger siblings because they’ve always seemed ahead of me. When my brother was in an elite summer marching band, I wrote him letters while he was away and often told people about where he marched. Just recently, I talked with a band teacher at my apartment complex about marching band, and I proudly said, “My brother marched with X for five years.” I admired his coordination and passion for the art. When he finally got a job he’d been trying for, I was thrilled. We went out to celebrate.

I was really impressed by my sister’s choice of undergraduate studies because I would have been intimidated by much of what she studied. I admired her when she left home after graduation. I was always too afraid to leave my home state. For much of my life, I felt like a younger sibling just trying to keep up, hoping that being near them would make me more creative, athletic, or sociable. They always seemed like cool people who I knew wouldn’t be my friends if they weren’t my siblings, but we were related, lucky me! For years, the amount of pure love, pride, and adoration that flowed toward them seemed endless. That’s why this week felt like a bomb went off—realizing it didn’t go both ways and that the truth was kept from me for years. To be clear, their feelings and experiences are valid. I’ve heard different opinions about this. Some say I’m not entitled to someone’s innermost thoughts, which makes sense, but is it lying by omission not to tell someone the truth when they ask? The part of me that likes clear answers wants to say yes, it was lying. What I do know is that they could have told me and didn’t, and that hurts. I prefer when people tell me the truth, even if it’s painful.

I keep wondering what comes next. This week, my first step has been grieving the relationships I thought I had with my siblings. It often feels like I’m picking through the remains, not just of those relationships but also of the trust I had in myself. I thought I understood what was happening, but I was wrong. I need the people I love to tell me the truth, especially when I ask. Now, I’m focusing on making more friends and connecting with my chosen family. I spent this week checking my phone, hoping to hear from them. From my point of view, they should be the ones to reach out. I get a lot of phone calls and text messages on my personal phone for work, and I looked at my cellphone this past week, eagerly waiting for some kind of communication. The hopeful looks towards the screen that stands to the right of my keyboard have stopped. I’ve also been sifting back through my memories of them this week, seeing so many interactions through a new lens. Expressions, annoyed stares, and looks of befuddlement are put into proper context, and I’m able to understand why there’s been distance, tension, and a lack of closeness over the years. Life is also moving on. I’m taking care of health issues so that when I get married in the future, I can have children. I have another graduate school application to fill out. My two cats still need to be fed twice a day. The rhythms of my life continue to move me forward as this looms in the background.

I feel torn between the hopes I had for the future with them and what I thought existed in the past. I had thought we would be close as adults, help each other with childcare when we had our own families, and find ways to support each other that looked similar to our lives in childhood but would also be different. The precipice I’ve reached is that I don’t trust them. I don’t trust that they will tell me the truth when I need them to or that they will treat me in a way that facilitates close, prolonged interaction. The entire situation has also shaken the trust I had in myself. I have spent years in therapy learning how to trust my instincts, what they’re really telling me, and how to honor them without letting my feelings burn down my world around me. I was convinced for years that I had a good grasp of the situation, the issues, and how to handle them. In the end, I lacked information and was unable to make fully informed decisions.

I don’t believe in cutting people off unless it’s an extreme circumstance, so unless they decide to go no contact, the plan will be low contact for a while. What this entire situation has reminded me of is that while I might feel functional in society for the most part, proud of my full-time job, my ability to drive, live independently, etc., there are always going to be those who will only see my limitations. For some, my need to avoid loud or rowdy individuals will be a deal-breaker, or my lack of social understanding, even after all my practice and study, will still be too annoying to look past. I used to think such people only existed in the outside world. I now know they exist within my family of origin. There is no difference between my needs in the situations mentioned above and those of someone in a wheelchair needing a ramp to access a building. I’ve heard of people in wheelchairs not being invited to parties or outings because the host didn’t want to deal with accessibility. I always thought that because my disability was invisible, I was safer from discrimination and judgment. The larger lesson is no, I’m not, and there is still a long way to go to educate people on disability.

To anyone who has ever been excluded or judged because of their disability, I see you, that experience should not have happened to you, and all we can do is work together to make sure it doesn’t happen again to another disabled person. I’m engaged in that work daily and will continue to do so for the rest of my life. You’re worthy of friendship, community, and laughter.