Our Autistic Adult Daughter Also Has Schizophrenia: Our Family Journey

We were lucky enough to get a fairly early diagnosis of autism for our daughter. I actually noticed signs that something wasn’t right with Wendy when she was still a baby. Unlike our two older children when they were young, she didn’t make eye contact and didn’t show too much affection. By the time she was two, I had taken my concerns to our pediatrician and we got a diagnosis of autism spectrum disorder.

Even before she went to preschool, we were able to start some educational, developmental, and social interventions. But even with interventions, Wendy has struggled with her autism. As a child and teenager she did well in school; she’s very smart. But her interactions with other people are challenging. Even now as an adult, she struggles to develop meaningful relationships. She doesn’t read body language, facial expressions, or social cues very well, and that tends to make other people uncomfortable. Wendy also engages in repetitive motions, usually shaking her head and flapping her arms. Over the years, she has learned to control these movements to some degree, but especially when stressed, she still does it.

Living with her autism spectrum disorder for so many years, we had all come to terms with it by the time Wendy was in high school. She was never going to have many friends, but the kids in school were nice to her and she loved learning, especially science. She planned to go to college to become a chemist.

Then we started to notice some troubling behaviors and moods in Wendy. At the time, we had no idea these were typical early signs of psychosis. First her grades started to drop, which was unusual because she had never gotten less than a B in school. She complained that it was hard to concentrate. She also stopped taking care of her appearance; I actually had to remind her to take a shower every day.

Early psychosis begins gradually, as we learned later. So it wasn’t obvious at all that this was the explanation, especially with Wendy’s autism. She has never been demonstrative or emotional, but during this time she seemed even more distant.

Her father and I didn’t get too worried until she started talking about seeing insects crawling on her skin and hearing a voice just to her left. One thing that has been beneficial in terms of Wendy’s autism is that she has never tried to hide anything or be dishonest. She told us right away what she was experiencing. We knew that something really was wrong.

It was so devastating to take Wendy to see her doctor and to be told she probably had schizophrenia. She already had challenges, and now this serious mental illness would make her life even more difficult. We went to a psychiatrist for an evaluation and got a definite diagnosis of schizophrenia.

Wendy fought us on treatment, which was unexpected. She didn’t want to take medications or sit with a therapist. She thought we were trying to poison and brainwash her. I’m ashamed to say I even started sneaking medications into her food. My husband and I fought over this, and over what to do about Wendy, nearly every day.

Our next oldest daughter was graduating that year from high school, and neither of us had the time to spend with her that she needed. Her older sister, thankfully, stepped in and helped her get ready for college. Meanwhile, we had to pull Wendy out of school. We were at our wits’ end and didn’t know how to help her.