Jessica’s Message: “It’s not like in the movies. It’s not that strange, either. This seems like a reaction that I had to stress, and things like that. So, it could be an anxiety thing, too. These are not big scary things. These are just… I mean that’s what my brain just decided to do to cope with it.”

Jessica is a young woman of 21 years living in the Cincinnati area. She described a “really good” childhood, one where she took trips to Disney with her family and participated in Girl Scouts and Brownies.  Jessica has a particular interest in music.  She plays the flute and the piccolo, and she likes to walk and listen to music. Exercising is also important to her, and on most days, she gets her steps in while enjoying her music.  She also likes spending time with her family, and she especially loves amusement parks. 

When asked to describe what a good day in her life would look like, she described it this way:

Jessica says that she has felt different from other children and socially awkward, from her earliest years.  She has been diagnosed with schizo-affective disorder, and while she has not received an official diagnosis of autism, she says that several doctors have told her she has it, and she believes that this explains some of her social challenges.

People have agreed that I have autism.  Because sometimes the way my voice sounds is flat and my facial expressions, like flat….So people notice that.  I think that’s why I thought people were actors too, because most people can notice that something’s off about me.  And then they kind of like treat me a little different sometimes. 

Still, there are ways in which she feels that her personality does not fit the stereotypes of autism, particularly when it comes to empathy and being literal in her thinking.   

She describes these characteristics here:

Jessica continued to experience social problems in elementary school and high school, especially in being able to express herself.  She saw herself as “not fitting in” and believed that there was something wrong with her because of it.  These problems continued into college and have caused her much distress. 

So, I just always struggled socially.  I was very, very quiet in high school. … But sometimes people would say stuff like, “Oh, she doesn’t talk.” I just didn’t like that about myself. 

The struggles that Jessica experienced socially along with the episodes of her illness have strongly interfered with her college education.  Still, her strong drive to succeed has contributed to attending three different colleges, before continuing at the third.  The stress that she experienced during those experiences was almost certainly a factor in triggering the psychotic symptoms of her illness during that time.  Yet, looking back Jessica views these experiences as steps in learning to believe in herself and value the person she is.   

This was when I was trying to make sure that everything would go right to go to UC.  So, I was like, “I can’t have any more chances of things going wrong.”  I was getting really anxious, so I was planning and scheming everything.  I spent so much time preparing for that; I was anxious.  But it just didn’t work out.  It wasn’t time, and I had to learn some other stuff first.  I’m still working on it, like self-acceptance. 

At this point in her young life, Jessica has experienced six hospitalizations.  She experienced many of the aspects of these hospitalizations as terrifying, not because the workers there were unkind to her, but because she was frightened of her own thoughts and feelings as well as those of other people, and she was unable to express herself to the point of muteness. Her inability to talk to people complicated the process of prescribing the right medications, in that she experienced complications that she was unable to address.

They gave me Ativan while I was there, and they sent me home with a month supply.  And then later on I had to change my Zyprexa to Abilify, and also do a program like PHP: partial hospitalization program.  I had to do that and to cope with that, because I wasn’t good with people.  They scared me.  This was before I really learned how to talk to people, like at all.  So, I was taking too much of the Ativan…Now it’s in my charts that I’m allergic to that.  But the psychiatrist kept saying, “Oh just take it.  It will get better.” And I didn’t stand up for myself. 

At one point her suffering became so severe that she actually asked to be put in a coma.  

And it was just a bad time, because I was in a lot of pain.  I was crying. I was saying, “You have to put me in a coma, so I can get through this” But, yeah, it was really bad. 

During psychotic episodes, Jessica had fears about herself and her character that extended to where she believed herself a criminal, a belief that is completely unfounded by her behavior.  In speaking now about her past delusions, she can describe what she was thinking then. 

Criminal or psychopath has been the most common one.  Oh, everyone is an actor, and they’re in on a conspiracy or an experiment to try and see, basically, if I’m a good person or not.   

Even with all the trauma that she has experienced from her illness, Jessica has continued to learn and grow.  She learned all the hospital patients’ names and made friends as a result.  She learned to cope with the constant uncomfortable restlessness in her body (a side effect of the medication) by skipping in the halls and thus brought smiles to other residents’ faces.  She wrote down her thoughts when she couldn’t verbally communicate.  She made lists of things she believed she needed to learn and included her related strengths and weaknesses. She behaved brilliantly under the circumstances. 

Jessica has demonstrated resilience in spite of schizophrenia and possible autism in other ways as well.  She has gained confidence in herself as a person and in her ability to stand up for herself. 

My friend, he was like, “Why do you care so much about what people think?” And that was just kind of like everything to me, because I want to be doing a good job of being a person.  So, it just meant so much to me, and now I don’t have to do that.  I was at a dance, and I don’t like to dance, so I just stood there.  And mom was like: ‘Oh, why aren’t you dancing?” But I can accept that this is how I am.  I don’t scream on rollercoasters.  I don’t dance. 

She has come to view her diagnosis as a challenge, and she realizes that everyone has those. 

Even though most people haven’t had schizophrenia, most people have had something bad happen to them or not go their way. 

She has gained insight into the strategies that have helped her gain confidence and become a self-advocate. 

Interviewer: How did you get that back for yourself?

Jessica: I think all that writing I did and having to finally tell them.  Like talking to the psychiatrist, “This isn’t working,” or “I think I need some lithium.”  I think just my experience with medications is what did it.  Because I finally said, “No.  That’s a bad idea.” 

Importantly, she has learned not to listen to negative predictions about her future. 

Sometimes my mom says things like, “I don’t know how you’re going to be able to pay bills.” Or, “How are you going to do that?” I’m trying to not listen to that.  You know, keep my own self separate.” 

As with many young people her age, Jessica is pursuing her college education and considering her goals for the future. Still, she continues to wonder if her challenges might stand in the way.     

Interviewer: What do you think you might want to do with your psychology degree? 

Jessica: Oh, I haven’t decided.  I keep thinking therapist, school psychologist.  But I don’t know if I can be a therapist if I have autism.  I don’t know.  That’s one thing I think about.  Because I’d have to learn a lot more about people to be able to do that. I only just started doing it, like five months ago. [laugh] 

Jessica felt relief at being able to talk about her life through this Project because she has struggled with being able to express herself in the past. And it felt better to be able to do so now.