Our Autistic Adult Daughter Also Has Schizophrenia: Our Family Journey
Autism spectrum disorders begin in childhood and are characterized by difficulties with social interactions, communication, and perceptions. Autism can range from mild to severe and cause variable symptoms by individual. Schizophrenia is a severe mental illness that causes hallucinations, delusions, and unusual behaviors, thoughts, and emotional reactions. It often begins in late adolescence or early adulthood. Living with both of these conditions presents unique challenges, but the right treatment can provide hope and a chance at a meaningful and even independent life.
Our daughter lives with both an autism spectrum disorder and schizophrenia. She is very smart but not always capable of living independently.
When we first got treatment for her schizophrenia, we felt desperate about her chances of having a normal life. But with intensive, inpatient treatment, medication, and ongoing therapy, she has learned how to mostly manage her schizophrenia symptoms.
While we will always have to support her to some degree, our daughter now lives, works, and enjoys life.
An Autism Diagnosis
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.
Early Signs of Schizophrenia
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.
Our Struggles as a Family
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.
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How Rehab Helped Our Daughter Manage Schizophrenia Symptoms
With Wendy at home, I was forced to take time off work to stay with her and supervise her to make sure she wouldn’t hurt herself. This was when we realized Wendy needed more help than we could offer. We enrolled her in a residential mental health treatment facility for a six-month program.
The program we chose included staff with different types of expertise, including therapists experienced in working with adults on the autism spectrum. Because Wendy resisted medication so strongly, the team started her treatment plan with therapy. After about a week of intensive sessions, they gained her trust and convinced Wendy to try an antipsychotic.
This was such a relief. My husband and I went to visit her a week later and already we felt like we could see our real daughter again. The medication helped with her symptoms right away. She no longer heard that voice behind her, and she told us that she knew we were only trying to help her.
Medication wasn’t the only solution, though. Wendy still struggled, and we worried her symptoms would reoccur. Therapy, social skills training, healthy coping strategies for stress, and learning to make healthy lifestyle choices were all benefits she got from treatment and that she has been able to continue to use.
During her stay in rehab, the staff included me and Wendy’s father and sisters. This turned out to be really important. It helped us learn more about what she was experiencing and how best to support and help her. It’s been a long journey, but going to rehab made all the difference.
Wendy was able to finish high school, although she needed an extra semester to do it. She started college classes at the local community college so she could stay at home. She is just about to finish up her two-year degree, and we are all preparing for her to transfer to a four-year university so she can earn her chemistry degree. Meanwhile, she has been working two days a week as a lab assistant for one of her professors.
We couldn’t be happier with how treatment has helped our daughter learn to live a more normal life with two conditions that have the potential to render her completely dysfunctional. Our entire family is healthier and happier, and the journey through Wendy’s illness and treatment has brought us all closer together.
If you’re concerned about a loved one and believe they may need residential care, we can help. BrightQuest offers long-term treatment for people struggling with schizoaffective disorders, schizophrenia, and severe bipolar as well as co-occurring substance use disorders and process addictions. Contact us to learn more about our renowned program and how we can help you or your loved one start the journey toward recovery.