Attenuated Psychosis Syndrome

Family
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Has anyone had this diagnosis, or heard of it?

I posted here several times back in August. My son was showing signs of schizophrenia (hearing voices, refusing to respond to any form of contact, eventually hospitalized for two days after I called in a wellness check) starting last spring and into the summer, but he was 850 miles away from home at college. I went to see him in August and through a combination of bribes and threats, got him to come home (the school had already said he could not come back until he met specific conditions, including a psychiatric evaluation).

I got him into a First Episode of Psychosis program right here in town. I really loved this group - they worked as a team. He saw a therapist regularly, a psychiatrist a few times, and he and I had family therapy with the director a few times as well. They told me that he did not present like their normal patients, and this rang true to me. He was (and still is) hearing voices, but he’s aware that they’re not real. He doesn’t seem to have any strange delusions. He’s had some (self-directed) progress in walling off his brain from the voices and figuring out how to stop paying attention to them. With the doctor’s approval, he is unmedicated.

Her final tentative diagnosis was “Attenuated Psychosis Syndrome”, which she described as a footnote in the DSM. I believe it’s kind of controversial, with the concern being that they will over-diagnose it and stigmatize kids who are not in psychosis yet. For my son, it seems like a more positive thing, as it’s not quite full-blown schizophrenia (yet - it can certainly go that way). I’ve begun to sort of think of schizophrenia as a spectrum, and for right now he’s more in the Asperger range (coincidentally, or not, we’ve always felt he had Aspergers as well).

With the approval of the FEP program, he has been cleared to go back to school, which was a huge hurdle. They had conditions for his re-admittance that I think will be good for him (must see a therapist once a week, can only take 4 classes). I was so happy for him - and yet as of yesterday at least, he still wasn’t enrolled in classes. At least he usually answers the phone when I call, but he sounds listless and a little hopeless. Also angry at the restrictions on him. I know he just wants to pretend like none of this ever happened, and I’m sure that he’s worried about being able to hack it, but it’s very frustrating.

Having my son at home over the fall was good and bad. In some ways, he seemed like himself, which was just wonderful, and so much more than I could have hoped for. Over Christmas he and his sister had a nice time, and we also traveled to see other relatives. He acts pretty normal most of the time.

But in other ways, I could see that (a) he’s been “off” for quite awhile (his sleep habits are horrendous) and (b) he just seemed to lose all drive or motivation. When I came to pick him up from the house he was living in, I was surprised to find it was reasonably tidy and that he’d been cooking for himself. He seemed to be nesting. At my home, he just ate whatever I cooked, and literally went 6 weeks without doing laundry (he did have a LOT of old underwear in his dresser). I know some of that is probably due to negative symptoms, but I’m just saying he seemed to be doing better on his own. I think he was depressed about being here and not in school. So it’s frustrating that he has a chance to finish his degree, and may be about to throw it away.

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This is where my daughter is. She has described she had this place in her mind she calls her “mind palace” where she retreated to to deal with stress and anxiety. There are characters there that talk to her throughout the day, but for the most part, she is aware they are not real… more like a very vivid daydream… but occasionally she gets confused about this and she has a good friend in school who is very understanding to help her get grounded in reality again. She does have frequent panic attacks based on her chronophobia, being terrified of the passing of time and getting nothing accomplished.

My daughter doesn’t have an official diagnosis yet as we are just beginning this whole process… at this point the doctor is suggesting possibly either schizophrenia or bipolar. After reading your post, I am wondering if she could get a similar diagnosis?

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My son would have qualified for a diagnosis like this while he was in college.

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I’ve been interested to read about your son. I know he moved away from your property and to a new city. How far away from you is he now? Does his brother live in the same city, and do they see each other? In some ways, I feel like my son is better off on his own, but on the other hand, I fear he’ll devolve into total isolation, and that is obviously bad for him. He noticeably improves with social contact. I think in another post you mentioned talking to him on the phone. How often are you in contact with him?

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My son now lives 6 hours away. His brother does live in the same city, they see each other occasionally and briefly, only when my son with scz initiates the contact. Its better that way, we don’t want him to build up delusions about his brother like he did about his dad and I. At first the delusions were just about his dad, as time passed with him living so close to us, his delusions began to include me.

Mine is much better off this way and its what he wants. He does isolate when his symptoms overwhelm him. I think - there is no way to know- that he did learn how to handle his symptoms better in the couple of years he was here without having the stress of working. He was under a lot of stress due to his other medical condition, to keep himself in a job that offered good health insurance. Working full time is more stress than he can handle and resulted in an episode at work that got him fired. The original psychiatrist that he worked with had recommended CBT to him and he eventually sought out a therapist trained in CBT.

When he hears auditory hallucinations (voices) he believes they are whoever is closest to him at the time. I stopped talking to him on the phone, we now communicate with texting, usually just regarding information he needs or I need. I don’t pester him because now I am one of his triggers for psychosis. I wish that had not happened, but if living here helped him get to where his is now, I guess I will have to “take that one for the team”.

My son can handle brief contacts on his good days. He works about 8 hours a month and sets his own hours. His job does deal with people. He also shops for himself after learning CBT.

Mine will totally isolate for periods of time, then pop out and get the stuff done he needs to get done. For him it seems to work.

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Hi - It would be worth asking. How old is your daughter? You mentioned school - is she in high school or college? I think the difference in the diagnosis is that the doctor isn’t recommending meds for my son at this time, because he is pretty grounded in reality, and they don’t really help with the negative symptoms. For the brief time he was on Risperdal, there was no change in the voices either. One thing I’ve read that the meds can do is not necessarily reduce the voices, but to reduce their salience - i.e., let them fade into the background and ignore them. This is what he’s been trying to do on his own, with varying degrees of success (some days better, some worse).

The negative symptoms, in my opinion, are even worse. My son seems to know what he’s supposed to be doing, but somehow doesn’t get around to doing it. I haven’t talked to him since Friday. On Wednesday he texted me that he knew what needed to be done to sign up for classes. On Thursday I tried to call, no answer. On Friday I called, no answer, several times until he finally texted me back “Please stop calling. It does not help, I feel robbed of agency, and it’s overbearing”.

So I’ve left him alone. I have no idea if he’s going to be starting classes this week or not. And if not, what exactly he thinks he ought to be doing instead. But I’m trying to be OK with it. If he didn’t sign up, then I’m guessing he wasn’t ready to handle classwork, either.

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My daughter is a senior in high school, soon to be 18 in a couple of weeks. She is still trying to figure out what she will do after that… school is very stressful for her, and the cause of many a panic attack, so I am not sure she will be ready for college soon. If she does decide to go to college, it would to major in art.

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The one thing I have to remind myself often is what one doctor told me “He has to do this on his own, you are here to give support.” It’s so hard to let them do it on their own, especially since we have to pick up the pieces. I admire you for stepping back a bit.

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Thanks so much. I think this is the hardest thing of all - wanting so much to help, and not really being able to. Or figuring out the line between helping too much or not enough. I have been in contact with the University. Technically he has until next week to enroll, but each day that passes means more classes missed, as they started yesterday. I think it is likely that he’s decided he can’t do it, and has gotten scared. When it’s too late, he’ll blame the school, saying that the requirements they gave him were too restrictive, or whatever. I just worry what it will do to his self-esteem, and what he will do instead (more and more likely, it seems, nothing at all).

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Not having the motivation is part of all this. My son saw his doc yesterday (I get to go). The doctor would like to see him socialize or exercise on his day off. On the way home we talked about several options - running, hiking, walking, snowboarding. I said you won’t do any. He said yeah I probably won’t. I said - well perhaps you could walk to the dumpster once a week and take your trash out. He said - yeah I should probably do that. lol - this is one baby step I’m hoping he will accomplish. He is working and days off he takes care of business (car stuff) or rests and watches movies. His job is very physical. Way better than we were last year : )

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How did he get the motivation to get a job? This is the other thing that’s driving me crazy about my son. He does NOTHING physically. He’s still young and in pretty good shape, but as far as I can tell, he hasn’t even left his house in the last few days. And the Dr. told him what supplements he should be taking, but I don’t think he’s doing it.

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He’s on Invega monthly. He was in full psychosis for at least a year. I put him in the hospital and on the shot and within two months he had a job stocking shelves at night. Within 3 months he had two jobs and was working 60 hours a week. Now back to 40 hours - one job. He did it all on his own. I think the groups he participated in in the hospital and the transition home helped him to focus on getting a job. He has sense bought two cars.

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I’m sorry you are going through this. I know it is rough. I did it for years. I used to make my son leave the house once a day. Then I realized that may not be a good idea as he was driving and in psychosis. Sometimes we’d see him on the side of the street trying to jump over things that weren’t there. Then he went into pure isolation for about 10 months. Then barricaded me out of the house. That was the time we knew it was time to call in help. (We did try wellness checks and doctors and Chinese herb doctors and herbs and psychics (she was actually correct, that he had some damaged neurotransmitters).

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Yeah, I misspoke a little. When he was home, he would go out for food, or to the grocery. He didn’t mind doing errands. He just wouldn’t work out or walk or run, which I felt could have helped his mood.