Family and Caregiver Schizophrenia Discussion Forum

Not Neuro Typical

Hoping Maggotbrane can respond to this post.

My question is about pathologizing what is not Neuro-typical. My son is very intelligent and creative. He reads a lot about philosophy, history, Buddhism, Method Acting etc. He graduated from film school 7 years ago, ( along with two hospitalizations for psychosis and suicidal ideation.)

He does not have a formal diagnosis, just Psychosis NOS. Smokes pot and nicotine to deal with anxiety. He refuses psych meds or seeing a Psych Doc. Has a therapist he occasionally talks to on the phone. He is having a hard time “Adulting.”

I know his thinking is not neuro-typical. I don’t know if he is actually “Schizophrenic” or what that even means. I have read that diagnosis are needed for Insurance purposes and possibly so Psych Docs have an idea of what types of medications to try or to avoid. But really, how accurate is a Psych diagnosis?.There is no blood test for Schizophrenia. A person may have symptoms, or characteristics that cause them emotional distress, but you can not pigeon-hole and label people. There is really a spectrum of symptoms which overlap with many different DSM-5 diagnosis.

I looked up positive symptoms of Schizophrenia which include
Hallucinations
Delusions
Confused Thoughts
Disorganized Speech: Probably, he goes off on tangents.

In the past he has heard voices but it is infrequent, and intermittent. Or else he doesn’t talk much about it anymore. While I wouldn’t necessary always call it “Paranoia”, he is overly sensitive to any perceived criticism. Even an innocent question or comment may make him think that we are judging or criticizing him. Most of his attempts at interactions from people are over social media and he often feels rejected, Ghosted, or misunderstood. He is often afraid that people are looking at him and judging him.

I am not sure what qualifies as being delusional. Is wanting to move to LA to become an actor and film director delusional? Especially now during Covid, with very little money, and no real acting roles since high school (except for a few parts as an extra.)

He has been working on an animation film for years which is very creative but completely incomprehensible to anyone else as far as story-line. Lots of young people want to make a living as an actor or film maker, but we don’t call them delusional.

He really wants to connect with people and especially have a girlfriend but has a hard time meeting people, interacting and accurately reading social cues . His Dad and I are really trying to honor his need for independence and separation from us. He is 27 and has not been able to support himself completely, but has moved out of our house and is renting a room in the next town.

Since he got some money from the stimulus, he has decided to move to LA. We have been told by therapists to allow him to make his own choices and mistakes. And not to keep rescuing him (especially financially.) The good thing is that he wants to be self sufficient and has not asked for money, (though he has not succeeded at employment in the past and has a hard time realistically making a budget and determining how many hours he would have to work to support himself.)

Currently he is doing low paying free-lance video editing from online websites. (He was doing Uber but the Auto Insurance is too expensive.) I do occasionally buy him food but he never asks for it.

I am not sure what constitutes delusional or disorganized thinking is. For some people, it is probably obvious but our son is very smart and I think his brain just has a lot of ideas that he is processing at the same time, that I can’t always follow.

He can talk about philosophy and art, method acting, political theory and history etc. all in the same conversation. He gets into these loops for example, where he will discuss the idea of “Resistance”, and the idea of “What you Resist Persists.” He must have been researching the term “Resistance” on the internet and came across a fringe group who believes that “the Jewish uprising in the Warsaw Ghetto was an over-reaction.”
I think he gets into conversations with people in fringe groups because they will talk to him and he is lonely. He also likes intellectual sparring. Here is an example of something he wrote in response to reading that post. Is this an example of disorganized thinking?

*Been thinking a lot about what happened to Bernie and the discrepancies between Communism, Socialism, and the idea of [#Resist]. When Donald Trump was first elected, the idea of [#Resist] was suggested to people who feared deportation and asked “what do we do?” It all sounded familiar to me… and whilst this is an extremely biased article, it is important to understand how the current views essentially parallels what happened in the past… criticized as an “over-reaction.” (note; I do not agree with this article as it is biased in the information it reports, and lacks a fundamental understanding of why uprising would occur. To be more specific about what I mean, an actress who habitually fluttered her hands was once asked to have her hand tied by a light string to the set. When the emotion was triggered by her scene partner, her hand moved involuntarily again and broke the string, and this was thought to be the appropriate use of the gesture…(From Strasberg’s “A Dream of Passion.” )

So is this creative thinking? Or disorganized thinking? Not being “Neuro-Typical” would be fine
if he was able to have friends, relationships, live a meaningful life and be self-sufficient. So far it has been a struggle and my heart aches for him. All I can do is Love him. I can’t fix him. I don’t know how to help him. But what to do if he moves to LA and it doesn’t work out…

@Crushd good to have you back. From your examples I don’t think your son has delusions or suffers from delusional thinking in a strict sense.

First, delusions deal more with persistent false or improbable beliefs, they also tend to the bizarre and grandiose and are difficult to prove or disprove. For example I believed the FBI was surveilling me from the apartments next door, and I could hear bits and snatches of their conversations through walls, windows etc. Elyn Saks believed she was destroying people with nuclear explosions set off by her thoughts. John Nash believed the Russians were communicating in codes published in mundane articles in newspapers and magazines. Of these my delusions were more stereotypical and relatively mundane, yet I had a phase where I believed the FBI was communicating via gibberish added to Spam emails (actually a tactic to throw spam detection software off the scent) so this part is closer to Nash’s experience.

Delusions of grandeur are a little more ‘squishy’ but tend to more extreme grandiosity. For example while quite psychotic I believed I was being groomed by the FBI and m therapist to go to Australia and find a cure or HIV/AIDS even though I had little skill or training in biochemistry or medicine. I once interviewed someone who said she was trained in a rarified discipline within my field by a famous researcher while attending a junior college (this was someone who had researched at Stanford and Carnegie Melon). She also said she had connections to Gloria Estefan which while interesting was quite irrelevant to the position I was interviewing her for.

What you describe leans more to simply impractical or aspirational instead. I’ve met many aspiring actors, directors, filmmakers, dancers, musicians and other creative types with a similar degrees of flakiness and impracticality, some talented and some less so. Many with low-wage day jobs in retail, clerical, food service, cleaning services, web and graphic design. A few do gig work like your son: doing voiceovers, voice acting, editing podcasts etc. Many had ongoing projects like books, movies, scripts, cabarets, plays etc. Only a few had visible mental health issues. I’ve also known a few moderately successful actors, composers, scenic designers. They tended to be more focused, practical, confident, resourceful and frankly lucky. I think there’s a degree of making your own luck in seeking out and recognizing and acting on opportunities. Within his field his sort of thinking isn’t uncommon. It’s more a question of at what point do people abandon their aspirations and ideals and follow a more practical or achievable pursuit.

You have a better case for disorganized or disordered thinking, but it’s not pronounced. Compare his post to this series of quotes from Elyn Saks’ The Center Cannot Hold:

“Memos are visitations,” … “They make certain points. The point is on your head. Have you ever killed any­ one?”…“What are you talking about, Elyn?”
“Oh, the usual.Heaven, and hell. Who’s what, what’s who.”
“This is the real me!”…“Come to the Florida lemon tree! Come to the Florida sunshine bush! Where they make lemons. Where there are demons.”…
“I don’t know if you’re having the same experience of words jumping around the pages as I am,” …
“I think someone’s infiltrated my copies of the cases.We’ve got to case the joint. I don’t believe in joints. But they do hold your body to­gether.”

His text has some disorganization and a few slightly odd associations, but on the whole it’s nowhere near as disordered or disorganized as her text. I can follow pieces of the argument he’s making and it’s not that far removed from the way “Bernie Bros” post, dropping the Strassberg anecdote and associating the Warsaw uprisings and #Restist / “The Resistance” seems reaching, as if he has fixations he’s trying to pull in.

Personally, I find the Psychosis NOS DX apt given the information the doctor had. It doesn’t “feel” like it reaches the threshold of SZ unless it’s very mild or still in prodrome. If it weren’t for the hallucinations, I wouldn’t think SZ or SZA at all. He sounds more like he might have mild undiagnosed autism or some kind of schizotypal or schizoid disorder. I don’t recall a pronounced mood component in your accounts, so bipolar, SZA and borderline disorders don’t seem to fit. SZ is a go to diagnosis when auditory hallucinations are involved, but there’s a pretty broad range of MI that feature them-- even parkinsonism, autism and depression.

I’m not a professional, and you definitely shouldn’t take my word for it, but there’s a degree of “it takes one to know one” . My intuition says he doesn’t fit neatly in the SZ and SZA DXs. I’ve said before I’m not a fan of labels and pathology for anyone accept doctors and academics-- I find them mostly harmful and easily misinterpreted by lay people. I’m sure it’s cold comfort, but whatever his disorder, I think it’s relatively mild compared to others on the forum. I’d be inclined to find him a life coach or a CBT practitioner or other directed form of therapy he trusts, and see if you can help him get his life together.

My main warning signs are the pot and his online activities. It’s fairly well demonstrated that some people have sensitivity to cannabis and that can lead to forms of psychosis. I had a bad experience with some seemingly adulterated pot in high school and was sensitive to the stuff afterward. I avoid it now, and am concerned that young developing brains have ready access to much more potent stuff nowadays. Per the online stuff, radicalization is more of a concern nowadays. Buddhism isn’t particularly known as a vector for radicalization, but the online world seems a cesspool for political radicalization with fringe stuff like QAnon and other conspiratorial nonsense. Where possibly, I’d reinforce that practice with in-person interaction if more likely to advance his goals, instead of retreating online.

Crushd, if your son has two hospitalizations for psychosis that already meets the criteria of schizophrenia. First episode psychosis is normally stated as psychosis NOS. However, your son has a second episode. If these episodes are six months apart, that is conclusive proof that meets the criteria for schizophrenia. You are looking at his current ideas of moving to LA to become an actor, which are relatively normal and doubting whether his schizophrenia diagnosis had been correct based on “delusions” that are relatively normal. I assume you must had seen how poorly your son was doing in the two previous hospitalizations with psychosis. I don’t think you should be in denial about your son having schizophrenia.

2 Likes

Interesting. I wasn’t aware of a “two-strikes and you’re in” rule in the DSM-5. I had just a single hospital stay and got a SZA diagnosis, so maybe there’s some variability in the first time psychosis NOS DX rule, or some misdiagnosis goes on with milder cases. My present psychiatrist codes me with something akin to unspecified psychotic disorder even with both SZ and SZA diagnoses in my past. Not that it matters, as he doesn’t take insurance and filing it myself out of network is such a hassle it’s not worth it.

@Crushd was there a diagnosis for your son’s second hospitalization? Or maybe HIPPAA is keeping that information from you? I recall drugs may have been involved with his first hospitalization. Also my impression was your son never took AP medication. Is that correct? If he did, did it improve his condition? To me that’s a better indicator than a subjective diagnosis.

For the record, I’m not anti-medication or advocating rejection of a SZ diagnosis. I’m more interested in results than hanging a definitive ‘label’ on anyone who rejects medication. We’ve discussed LEAP in the past, any progress with those methods?

Hi Maggotbrane,
Thanks so much for your thoughtful response.

Both hospitalizations were Psychosis NOS. This was 5 and 6 years ago. Meds at the time were Prozac, Xanax, Olanzapine, Temazepam. So anxiety, depression, psychosis, insomnia. He went back to school and graduated but with much stress and difficulty. Wanted to go home straight from graduation. Went to ER next day for anxiety.
Don’t know if he was consistent with meds. Got off of them soon after school. Didn’t feel that they helped. Continued to self medicate with pot and cigarettes.

Had several short term low skill jobs after college. Most did not last long due to difficulty interacting with clients. (Some paranoia, thinking people were looking at him judging him etc.) He has done some talk therapy with a MSW. Doesn’t think it helps but has stuck with it for over two years via telephone sessions. No CBT as far as I know. He used to tell me about the voices, no commands or anything, mostly just irrelevant comments, “SEE!” or occasionally judgmental “Stupid!” Often like static noise, making it difficult to concentrate and focus. He tried to frame it that he had had a spiritual experience and that if he had had the right guide, shaman, teacher, it would have turned out better. Hard to know how much the pot smoking exacerbates the psychotic symptoms,(though it must) which came first etc. There are mood components, I would say depression that often manifests as anger, and also anxiety. But depression is also a normal reaction to being lonely, having a hard time making friends and having relationships.

He doesn’t mention voices anymore. He was able to Uber for a year and a half and you have to be able to get along with people well enough for that so he was functioning at some level.

He continues to work on his movie. There is possibly some delusion in thinking that when he finishes it, it will lead to a career as a director (as it is mostly unintelligible though creative.) He is trying to get online editing video editing jobs but overestimates his skill level as he was not trained in graphic design and has applied for those jobs as well. I wish he would be open to a life coach or CBT. I have tried to encourage him, but he is not interested.

Thanks for your comments.

1 Like

Hi Lirik,

Thanks for responding. I am interested in your background and better understanding your point of view. Are you a person dealing with SZ related symptoms or are you a family member?

Many people have been given different diagnosis throughout their lifetime depending on symptoms causing the most distress at the time. A lot also depends on the perspective of the Pscyh Doc. You could have 3 different docs and 3 different diagnosis.

To really get to know a person/patient, it takes an ongoing relationship between doctor and client over time, where trust can be built and the person can feel comfortable revealing their inner world and not just be checking off a list of symptoms… With our healthcare system, this is often not possible. If a person does not have private insurance or if they don’t have the funds and the resilience to keep looking until they get a good match, they may hastily be given a diagnoses that does not fit. Their visits may be sporadic of they may be assigned a different doctor.

Also, people are not static, and depending on different stressors and circumstances, may find that they are more or less vulnerable or resilient at different times in life. Many people are not comfortable in the patient/doc relationship, especially if they feel misunderstood. What is your experience?

I am diagnosed with schizophrenia, also have depression and anxiety. I also recovered from the illness, so everything I say here is to help family members understand as much as possible in a recovery oriented setting.

I was first diagnosed with schizophrenia in almost a decade ago. My diagnosis under the incomptenece of my old psychiatrist was changed to bipolar with psychotic features. It is now back to schizophrenia under my great current psychiatrist.

From what you wrote in the two posts, I gather you do not really want to believe your son has schizophrenia. However, I want you to know that despite having schizophrenia, one can still recover with this illness. I am a finance professional currently about to resign from my job and am in the process of applying to law school. The fact he smokes pot however, raises the question of whether his psychosis is drug induced. All people prone to psychosis should always stay away from pot or drugs or alcohol.

Your son’s delusions or hallucinations are similar to mine. I do not have command hallucinations. I do have constant feeling and paranoia that people talk behind my back and are always looking at me. As recently as three months ago, I was hearing people talk about me in class, so it is perfectly possible to both work, go to school and still have schizophrenia. I wouldn’t say I am in a psychotic episode, as I realize perfectly what are hallucinations and delusions. Even when I don’t, I manage to ignore them, so I am perfectly in touch with reality.

Look back to the two times your son when he was hospitalized. How bad was his episode? Would you want your son to go through that again being unmedicated? Again, if he had two hospitalizations a year apart, and these being not drug induced, that would mean he has schizophrenia.

1 Like