18-year-old Diagnosed

[Serendipity]

Forgive me for posting before reading through everything. Kind of overwhelming.

My barely 18-year-old (still in high school) was diagnosed yesterday with schizophrenia on the basis of a CPI assessment. Symptoms have been present throughout her childhood. I know childhood onset is very rare, and my daughter is very high-functioning, so I am curious how accurate this assessment is likely to be. We do have an MMPI assessment as well as a psychiatrist appointment scheduled but the psychologist feels very confident about this.

We sought treatment for her largely for anxiety symptoms. She does also have visual, auditory, and tactile hallucinations as well as feelings of disassociation that are bothersome, but she is also very-self aware and clearly sees symptoms for what they are and none of the voices or hallucinations are aggressive or negative according to her. (Nor positive - just neutral.)

I’ve seen no evidence of major delusions (in terms of believing any of her hallucinations are real), though I do now wonder whether her anxiety is a form of delusion/paranoia (for example, constantly throughout her life fearing her father and I will be angry with her for minor transgressions, when we are pretty much the most chill parents ever.)

She is concerned about side effects of medication, and her father and I are concerned about her getting appropriate treatment for this grey area situation: she’s being diagnosed as technically an adult, but the symptoms have been present since childhood. And she is high functioning - straight-A student, positive relationships with friends, etc. The way the psychologist put it, she is “surprised she is even functional, let alone successful, given the results of this CPI assessment.”

I’m just not sure how as a parent to process this given this combination of factors. I’m wondering how accurate these assessments are. Is this schizophrenia causing anxiety, or could it be a severe anxiety disorder causing symptoms that mimic schizophrenia?

She is in the process of applying to college, and all of her choices are out of state. Again, she is functional, and we can’t help but wonder whether treatment (or the wrong treatment) will do more harm than good at a pivotal time in her life.

I guess I’m looking for advice - what kinds of questions to ask to maximize chances of an accurate diagnosis, appropriate treatment. Also if this diagnosis is accurate, what kinds of things to look for services available to her at college away from home?

[Lirik]

I am not sure what CPI or MMPI asssessments are. However, as you mentioned, if she has visual, auditory and tactile hallucinations then most likely she has schizophrenia. It seems you originally sorted out treatment for anxiety. I don’t know how severe her anxiety is, but when I was anxious, I would quit school and work.

It seems your daughter is functioning in daily life perfectly fine, so it makes me wonder what made you seek out treatment for her anxiety to begin with. Does she suffer from depression also? Sometimes these anxiety/depression and minor schizophrenia symptoms might be the onset of more severe symptoms. Anxiety often comes with schizophrenia. Anxiety alone can never cause hallucinations/delusions.

Anti-psychotics would be precribed to her if she does have schizophrenia and these can come with great side effects. Some side effects include weight gain, restlessness, etc. They can also cause cognitive difficulties sometimes if put on a high dose, which might affects her grades in college.

In spite of all of this, I would just wait for psychiatrist appointment for the proper diagnosis. I am very concerned about her applying to schools out of state. If possible, she should be close to family given the uncertainty of her situation and illness.

I have lived with this illness since 21 and am now 31, I have taken many kinds of medications. I also used to work in finance before quitting to now study for the GMAT. I have a lot of experience dealing with this illness, especially for more functioning people with schizophrenia. Feel free to ask me any questions.

[Serendipity]

She requested evaluation because of her symptoms. The hallucinations are not constant, aggressive, or negative. A few are unnerving, but they are mostly neutral. She hallucinates shadow people (that flicker away and pose no threat), and bugs. The voices are neutral background noise, not even addressing her. She has the sense of being touched, but only gently. She doesn’t perceive any of these things as ‘real’.

She only recently discussed it openly with me, though I didn’t find it entirely surprising. She mentioned some of these things in childhood, but as she was functional and none of her behavior was alarming, we all thought it was a vivid childhood imagination. Then she stopped discussing it around adolescence so I assumed she outgrew it, but I guess she didn’t. We mostly thought of her as an unusually imaginative and somewhat neurotic child.

Reading about childhood onset I am reading descriptions of children that were much lower functioning and have much more dramatic behavior quirks.

I’m having trouble parsing out information for childhood-onset (1 in 40,000) vs adult-onset (1 in 100). Also curious if it is possible some adult onset might be childhood onset like my daughter with symptoms mild enough that no diagnosis is sought?

The problem with her remaining in state is that she has very specific education goals that are not available in our state. I don’t want her to throw her goals out the window because of this diagnosis. She’s been high functioning, a straight-A successful student (again, not typical for one diagnosed with schizophrenia).

[Lirik]

Well what you describe sounds like hallucinations to me. Shadow people is quite common in the diagnosed forum.

I think what you should be concerned with is whether her illness would deteriorate further. She has had hallucinations since childhood, and her symptoms might escalate later in life. Most women get their schizophrenia around the age of early 20s-30s. The fact she has not talked about it since childhood and is talking about it now, might be signs that her hallucinations are escalating. If you insist about her going out of State to study, you would definitely need some kind of constant communication with her. The worst that can happen is that she is stranded out of state and alone and acts out because of paranoia/hallucinations and gets into trouble with the law. She might also act strangely with classmates if her illness deteriorates which might make her embarassed to enter the school again. Treatment with anti-psychotics would hopefully reduce or eliminate her hallucinations and prevent a real deterioration from happening.

[Serendipity]

Thank you for the response.

The worst case scenario you pose seems reasonable to consider, but also doesn’t seem likely. She’s never acted out. She has gotten in trouble even once at school. I’ve rarely even had to discipline her at home her entire life. She has good relationships with friends and classmates and always has.

She says the hallucinations are not escalating, but that in her teen years she has developed more of an awareness as to the differences in perception between hers and “normal” people. Since she has no memory of not experiencing these things, she has no basis for comparison. She does know which things are not real typically, and figured it was just something one had to learn to ignore.

[Lirik]

This illness can totally ruin a normal person’s perception of the world. It can totally change your daughter. I am not a psychiatrist, but I would encourage you to ask the psychiatrist whether your daughter should be on a maintence dose of anti-psychotics just to be sure the illness doesn’t deteriorate when she is out of state.

[hopeisahead]

No easy answer. A diagnosis of schizophrenia is very scary for all of us parents. I am still struggling with it as it refers to my son. Sometimes I do not even dare to say the word. So accepting, if it is a correct diagnosis, is part of the process.
As I see it, if your daughter is functional maybe you can wait and see. Watch carefully. Look for things that may trigger her hallucinations, watch her social interactions…Talk a lot to her Remember that once she is 18, you need her total cooperation to participate in her care, and college can trigger episodes.

[Maggotbrane]

@Lirik

I am not sure what CPI or MMPI asssessments are.

CPI is the California Personality Index. It’s similar to the Myers Briggs test, but it’s more geared to social style. While useful as far as working on social functioning and interaction, it’s questionally relevant to a schizophrenia diagnosis other perhaps as a measure of coping skills. I took it many years ago.

MMPI is the Minnesota Multiphasic Personality Inventory. I’ve taken this one as well. This is more of a personality and psychopathology assessment usually given if some form of mental or personality disorder is suspected. My guess is psychologists may have administered these tests, as the DSM-5 is more commonly used by psychiatrists.

Had she had any other supportive care before this? Since she has insight and appears to possess coping skills, I’d consider supportive psychotherapy and CBT (cognitive behavior therapy) as well as a low dosage AP medication as “insurance”. These are all good skills and relationships to have regardless of whether she chooses to continue them. Peer to Peer training through NAMI would be good too.

I was reticent to try medication due to similar concerns with side effects, and went a year with semi-florid psychosis under Jungian Therapy until I was hospitalized and eventually accepted supplemental medication. In my experience anxiety is often in reaction to hallucinations and heightened perceptions with delusions, delusional systems and sleeplessness as next stops on the road to a full psychotic break.

All this said, choose carefully when speaking to psychiatrists and psychologists. Some psychiatrists tend to want to medicate every last symptom out of existence rather than medicate just enough to help sufferers cope. For what it’s worth, I don’t hold much stock in absolute diagnoses. Every person is different and thus every expression of mental illnesses is different. The point should be to help her to better cope, and be there to help should she reach a crisis. Stress management is key. The biggest future risks to her are likely college, job and relationship/childrearing stress.

Disclaimer: While I am a part-time caregiver of my brother and father with SMI, I was diagnosed with SZA over thirty years ago. I’m an advocate of appropriate drug treatments for SMI, but I feel they are incomplete treatments and additional CBT, supportive talk and psychosocial therapies are helpful where feasible. Any drug advice is from personal experience or research and not a substitute for qualified Psychiatric care.

[three]

This is an illness that decimates the goals, expectations, even personality for a time.
It strikes people down at any age and is often a real disability
I was diagnosed age 17 or 18, that is adolescent onset. Childhood onset is full blown florid psychosis at age 12 or under i believe.

I’m so sorry your daughter does sound like she is in the process of the beginning of this illness

[Serendipity]

Did you have symptoms as a child?

My daughter isn’t reporting a worsening of symptoms right now. She claims her symptoms are the same as they’ve always been, it’s just that she has developed a clearer awareness of difference of perceptions between hers and ‘normalcy’, and requested evaluation before leaving home.

I’m confused by this diagnosis because even the psychologist who delivered it to us is saying that typically with the results she has, the patient would be non-functional. That is not functioning at all and certainly not high functioning like my daughter is and has been her whole life (admittedly with challenges still). She has good friends, good family and other relationships, is a straight-A student that ranks 9th in her class. Anything thought or hallucination that is clearly ‘not real’ she recognizes is not real. The trouble area is with areas where she has no objective toolset to confirm reality (a big one is being convinced and terrified of the disapproval or anger of others when she has zero objective reason to think this is so.)

I’m not trying to be in denial here, but as these symptoms have been present her entire life that would be child-onset, right? I’m reading that is extremely rare (1 in 40,000), and that these cases the child is typically not functioning at anywhere near the functionality my daughter is.

So I’m confused as to what’s going on? Do many “adult onset” cases have perceptions such as these in childhood only it wasn’t severe enough to warrant a diagnosis? I’m not reading this - I’m reading these symptoms for adults come out of nowhere?

Also I remembered the acronym incorrectly. It was a PAI assessment not CPI.

[Serendipity]

I appreciate your thoughts here:

All this said, choose carefully when speaking to psychiatrists and psychologists. Some psychiatrists tend to want to medicate every last symptom out of existence rather than medicate just enough to help sufferers cope. For what it’s worth, I don’t hold much stock in absolute diagnoses. Every person is different and thus every expression of mental illnesses is different. The point should be to help her to better cope, and be there to help should she reach a crisis.

This is where our thinking is right now too. I’m also wondering that if if is worth consulting a neurologist to rule out any possible physical causes before exploring drug treatments. Again we are not in crisis mode. She says she is experiencing nothing different than what she has experienced her entire life.

[Maggotbrane]

@Serendipity

I’m not trying to be in denial here, but as these symptoms have been present her entire life that would be child-onset, right? I’m reading that is extremely rare (1 in 40,000), and that these cases the child is typically not functioning at anywhere near the functionality my daughter is.

My take is rare cases are often perceived to be even rarer than reality, because people either don’t know that they aren’t “normal” per se, because it’s baked into their experience and they don’t seek help. And because of stigma no one goes out of their way to find a doctor to “fix” a “problem” they have adapted to. I “pass”, so I don’t go out of my way to disclose my illness. And psychiatrists don’t see many of these patients, first because they are rare, and second because they tend to manage themselves and frankly they often don’t know what to do with them.

I remember having a psychiatrist draw a bell curve with his hands and point to the left edge of the curve and say that’s where you are you. I had never met anyone with a similar level of my recovery, and I stopped going to NAMI meetings and conferences because of it. We hide, because there’s not much incentive to share our experience. It wasn’t until I saw Elyn Saks’ TED talk and read her book “The Center Does Not Hold” that I’d heard of anyone with a similar experience. And with McArthur grant money she found more a dozen or more in the LA area to participate in a study.

Per the “adult onset”, severity at onset varies. Some have symptoms seemingly out of the blue, while others like me have a long prodrome with a decline. As a high achiever, I spent a lot of time an energy covering my prodrome up to save face and it wasn’t until these efforts began to fail me did hallucinations and delusions start due to cumulative stress.

Your daughter’s generation has a more relaxed and less stigmatized views toward mental illness if depression and anxiety memes are to be believed. I’m not sure it’s significantly better informed than other generations, just more tolerant at the edges and there’s still significant stigma toward psychotic symptoms.

As mentioned CBT in particular offers a toolkit toward testing and determining reality. While I am not a trained practitioner, I sort of “rolled my own” by adapting the scientific and troubleshooting methods. In fact my experience has helped me at work, because people who think they have a firm grip on reality are far too trusting that they know what’s going on and can make assumptions and draw erroneous conclusions. Reality checking everything out of necessity, especially instrumentation and perception, has significant advantages when dealing with confusing and noisy data. When you have experiences like your daughter, it’s also easier to deal with distractions and remain calm. I find people look to me in a crisis because I generally remain calm and make deliberate steps to figure out what’s going on.

[three]

I did show signs of Mild Autism, and had a lot of difficulties with emotional problems and with other children.
.

My younger sister had pretty early onset I think.
She was suicidal as young as age 4 and was in free fall certainly by age 12 and totally delusional By 13.5 about a year before it started for me age 16.
Then there were drugs, promiscuity and abuse… for all 3 of us.

Typicaly she did not know what she was experiencing wasn’t real. We both separately had telepathy paranoia, which is the worst kind of bullying a mind can imagine… I was paranoid about my peers and the government and strangers communicating all my internal thoughts and ticket machines and birds talked to me.

The story is long, and this sister was hit by a car and killed age 25 after 2 years in hospital followed by my illness taking a turn towards an awful prognosis and Then our youngest sisters non med compliant alcoholic late onset schizophrenia.

I can only assume it will get worse with that diagnosis but it’s not something I know about, mild cases if they exist, I have never seen it

[Maggotbrane]

@Serendipity

This is where our thinking is right now too. I’m also wondering that if if is worth consulting a neurologist to rule out any possible physical causes before exploring drug treatments. Again we are not in crisis mode.

I think visiting a neurologist might clarify matters if insurance would pay for it. Psychiatrists view the world largely through a psychopharmacological prism, so having another view may be instructive. I see some possible overlap with synesthesia and other rare neurological disorders. I recall certain diet deficiencies can cause hallucinations and misperceptions. It’s very likely your psychologist has a liability concern if he/she doesn’t have a work up for schizophrenia done— I know mine did.

[Maggotbrane]

@three reminds me that I hadn’t asked if there was any known family history of mental illnesses like schizophrenia or bipolar disorders. These diseases are highly heritable, and if you inquire discretely in the extended family you may learn of illness you were unaware of. I know that my nephews for now do not know of my illness, but they know of my brother’s which is more self-evident. If you don’t find anything, this may provide additional support for a neurological work up.

Another thought after @Lirik mentioned shadow people, is you might want to look into Elyn Saks’ book as she documents this symptom in it (I’ve had but one fleeting visual hallucination and one olfactory). There are other accounts of high functioning people with schizophrenia and similar diseases. There’s also a movie out right now “Words On Bathroom Walls” which is based on a book. I haven’t read it, but I’ve seen the movie after @oldladyblue mentioned it. Perhaps some of these accounts may resonate (or not) with your daughter.

Here are some videos to get you started:

A tale of mental illness | Elyn Saks

The voices in my head | Eleanor Longden

- YouTube

[Maggotbrane]

@Serendipity

Did you have symptoms as a child?

Not per se. I had very sensitive hearing and a rather vivid imagination. I did not speak true words until I was about two and a half, yet I would hold conversations in gibberish in my room apparently to an unseen audience and then laugh hysterically. I had a habit of escaping from my room at night before I could walk, so my parents had set up elaborate means of roping my door shut (it did not have a lock). My older brothers were concerned about me-- perhaps I was possessed. I had seen a Katz and Jammer Kids cartoon that showed a cave with cricket noises and huge eyes in the dark and had imagined that the noisy crickets outside were huge monsters. There’s a story about me shouting out the window to my grandmother “not to let the crickets get you.”

I don’t remember much if any of this. So in short, a normal childhood.

[Lirik]

Yes I have had a MRI scan done on me to rule out physical brain abnormalities before commencing drug treatment. I believe brain tumors can cause hallucinations.

Regardless, I think your fixation on child onset or adult onset is not useful. Majority of adults with schizophrenia do not function at my or Maggotbrane’s level, so whether children function or adult function like we do is rather pointless. The key issue is once physical abnormalities are ruled out, whether to take anti-psychotics to prevent your daughter’s illness from deteriorating. If your daughter does not take medication and does deteriorate, it can turn her into a “low functioning” person.

[Serendipity]

I only learned while talking to my mother about this that my great uncle had severe schizophrenia. I had never met him.

And thanks for the links… funny I had just watched those Ted talks yesterday!

[Maggotbrane]

@Serendipity

I only learned while talking to my mother about this that my great uncle had severe schizophrenia.

To me this cinches the merits of putting her on a low dosage of an antipsychotic as a precaution or preventative. Young minds have significant neuroplasticity which may have allowed her to route around her issues. I did a significant amount of voice, music and acting training after I became ill and I hypothesise (without proof as all people with schizophrenia do ) that the added neural links may have helped me with my sound processing, so audio hallucinations don’t bother me much any more. Neuroplasticity wanes in young adulthood which also coincides with the typical time of adult onset. I haven’t been able to justify a brain scan for me but as @Lirik says I think it’s warranted in her case.

Per you daughter’s concern about side-effects, at low dosages these are minimal in third and fourth generation medications. When I took traditional neuroleptics in the 80’s you felt obviously medicated, but each generation has been better and better. Weight gain and other metabolic changes are the most common, but can be detected and mitigated. My opinion is some percentage of perceived side-effects are tied to delusional systems, especially those which have no observable symptoms.

If it does turn out to be schizophrenia or a related SMI, my opinion is her prognosis is good if she does not fall into anasognosia. There are much better medications than when I was younger, and more examples and role models of high functioning people with schizophrenia. I recommend Dr. Fuller Torrey’s “Surviving Schizophrenia” for descriptions of some of the better case scenarios. Jung also wrote about “permability of the membrane” to the unconscious being a well of talent for those who can manage schizophrenia.

I have an interest in the intersection of movies and other media and depictions and understanding of mental health. I write unpublished essays on the subject in hopes of doing something with them someday. I’m not sure if you are familiar the Star Trek Movie “First Contact”. I have an essay relating first contact with psychiatric/psychological help to the First Contact(s) of the human species with extraterrestrials. I had a rather disastrous “first contact” of my own.

Toward the end of the movie there’s an exchange between Picard and a character, Lily, making her first contact. It sums up how a feel about a new generation successfully navigating a challenging illness:

LILY: …I envy you. The world you’re going to.
PICARD: I envy you. Taking these first steps into a new frontier. …

[Wisdom]

I came upon this thread late and my apologies. I took the time to read thoroughly after I jumped too early on to post and ask if she’d seen a neurologist and, if not, why the diagnosing psychiatrist hadn’t requested imaging to rule out other medical conditions of the brain, as you guys covered, can cause the symptoms you’re describing.
It was my foremost thought reading the whole thread.
I know you were considering this too, and hope you acted. I certainly wish the best of results for you all. Please keep us posted.