"I would come home devastated, as if I were ill": living with an undiagnosed disorder

PalmWhen she was little, Macarena Llull (Seville, 1987) didn't feel like she was different. "Looking back, when I was in primary school, I didn't notice anything particularly different. I had my school friends, but I didn't have them outside of school. I was always very solitary. I was very focused on my studies and always reinforced that," she explains. That feeling of strangeness, still vague, didn't raise any red flags. "In fifth grade, I had sessions with a counselor... and they told my parents they thought I was gifted. They didn't discuss what they could do, or anything. It was all much more complex," she recalls.

The difference, however, became clearer in adolescence. "That's when I realized I didn't like the same things as other people; what worked well for them was terrible for me. The way I related to others was also different, because the codes of interaction didn't come naturally to me. You realize you're imitating people, because you become something, you become me." Her circle of friends was minimal. "Small circle of friends, three friends at most, and I've always been an odd person. And as time goes on, you start to accept that you're 'the weird one,'" she says. Even when faced with difficulties, she felt she functioned differently. "I dealt with problems and difficulties differently than other people did. And I thought it was me who didn't know how to face them properly," she explains.

The discomfort had no name until her daughter was born. "After my daughter was born, I began to see myself reflected in her… I saw many things in that three-year-old doll that reminded me of myself. We were told to go through the diagnostic process, whatever it might be, and we went to see experts." until we were told it was autism"She recalls. When they discussed it with the neuropsychiatrist, a hypothesis she had never considered emerged. "We talked about me, my partner, and the doctor told me he believed I met all the criteria for autism. I had never thought about it, and it clicked."

For a while, she put the matter on hold, focused on the doll's diagnosis. But she finally decided to resolve it. "Eventually, I got tested. And that's where my journey began: because there are no options for adults in the public healthcare system, and everything has to be done privately. There are many sessions, and it costs a lot. Public healthcare doesn't cover psychological therapy support either. It was my decision to put the question to rest," she says. The diagnosis confirmed what she suspected: she had lived for years hiding behind a high level of masking. "I've always blended in with others. Currently, I'm also waiting to be tested for other abilities," she notes.

After learning she was autistic, many aspects of her life made sense: reactions, discomforts, and anxieties she had never been able to articulate. The signs had always been there. "For example, jokes I didn't understand, and still don't, and they're difficult for me. I couldn't understand my classmates' jokes and language," she explains. Despite not enjoying it, she participated in activities like going out at night. "I went because all my friends went, but it caused me a lot of mental confusion and overwhelm. I didn't like it. And here you understand that you're overstimulated, that the changes in light and sound exhaust you," she acknowledges. Those plans, so common for other teenagers, left her drained. "I would come home completely exhausted, as if I were sick. Without realizing it, I was forcing myself to make an effort to socialize with people, and that takes its toll on a mental and physical level." She also felt the effects in her body. "It took me a while to understand that autism is a neurological issue, but that it takes a physical toll: headaches, excessive focus…," she says.

Learning to set boundaries

With the diagnosis, and after a reasonable amount of time to adjust to the new reality, came relief. "Knowing the diagnosis has been liberating, seeing that there was nothing wrong with me. I'd always had the feeling that something was broken, that I wasn't functioning. Knowing who we are has helped me to understand myself better, to know how to set boundaries..." Her social and family environment, and how they treat and understand her, has also changed. However, stereotypes persist. "You always encounter people who tell you 'you don't seem like it,' because there's this idea that autistic people don't speak... but there's all sorts," she adds.

Now, with a new understanding of who she is, she has allowed herself to stop being so hard on herself. "I've stopped forcing myself to do things and I've stopped trying to please others... and I feel so much better." And that, she says, has been crucial in raising her daughter. "It has helped me tremendously to understand and manage my daughter... She feels incredibly supported by the idea that her mother is autistic. She doesn't see it as something bad," she says.

That's why Macarena Llull is calling for greater visibility for stories like hers: women who have spent decades feeling out of place until, as adults, someone has held up the right mirror to them, one that finally reflects them as they truly are, without filters or disguises.