Overview of Psychotic Disorders in Children and Adolescents^[1]

Randy is experiencing the beginnings of the first episode of psychosis. Psychosis, broadly defined, is marked by a disconnect from reality and impairment in reality testing, in which the person’s thoughts, perceptions, and behaviors are impaired enough to impede daily functioning (Arciniegas, 2015). Schizophrenia is readily thought of when thinking of psychosis, but psychotic symptoms can be a part of depressive disorders, a feature of some bipolar disorder presentations, or associated with substance use (American Academy of Child and Adolescent Psychiatry, 2018). Of note, especially in children and adolescents, who are still developing, early psychosis-spectrum symptoms may be accompanied by mood disturbances (either depression or manic-type symptoms) and may eventually evolve into any of several disorders (e.g., a primary psychotic disorder like schizophrenia, or a primary mood disorder like bipolar). However, there can be a necessary lack of clarity in the earliest stages when the disorder has not fully developed (Hartmann et al., 2020).

Two of the most prominent features of psychosis include delusions, which are fixed false beliefs about reality, and hallucinations, or sensory perceptions that occur in the absence of a corresponding stimulus (Arciniegas, 2015). Often, a thought disorder accompanies psychotic symptoms and includes features such as disorganized thinking, derailment, or thought blocking. Formal psychotic disorders include schizophrenia, schizophreniform, schizoaffective, and brief psychotic disorder. For the purposes of this chapter, we will focus on early psychosis and early-onset schizophrenia.

Psychotic disorders in children are rare, but they cannot be overlooked because they can have detrimental effects if not detected early. Additionally, while threshold diagnoses are rare (Kelleher et al., 2012), 17% of children and 7.5% of adolescents report having psychotic-like experiences, such as illusions (Maijer et al., 2019). Hallucinations are different from illusions, which are misperceptions of a sensory stimulus. It is imperative to hold the possibility that a child may be experiencing an illusion and have difficulty interpreting this phenomenon. Furthermore, experiences of illusions in children are often overlooked as subthreshold psychotic experiences, which can be just as significant for prognosis as threshold psychosis-spectrum symptoms. Experiencing subthreshold psychotic symptoms earlier in life can increase a child’s risk for developing more severe psychosis symptoms later in life, as well as increasing their odds for experiencing other psychiatric conditions such as depression, anxiety, behavioral disorders, substance use, and suicidal ideation (Calkins et al., 2015; Calkins et al., 2017).

The loss of reality testing and the functional impairment accompanying these experiences is what differentiates the clinically significant aspects of psychosis from the common experiences of a loss of touch with reality. Thus, clinicians should be sure to ask about the presence of psychosis-spectrum experiences in children, delve into context, and inquire if there is any related affective distress or impairment as a result of these subthreshold experiences. By doing so, a provider may be able to catch these early warning signs of psychosis, with the goal of intervening early to reduce the likelihood of developing a psychotic disorder later in life.

Prevalence of Psychotic Disorders

There are two forms of schizophrenia spectrum disorders that are diagnosed in children and adolescents: early-onset psychosis and childhood-onset schizophrenia. Early-onset psychosis is characterized by the onset of symptoms prior to the age of 18-years-old, with a global prevalence estimated to be 0.5% (Driver et al., 2013; Maloney et al., 2012). Childhood-onset schizophrenia is defined as an onset of threshold symptoms before the age of 12; it is extremely rare, with study samples showing a 0.04% prevalence (Maloney et al., 2012). About 1% of the population across the lifespan develops schizophrenia in their lifetime (Maloney et al., 2012) and usually the disorder is first diagnosed during late adolescence to early adulthood (late teens to early-to-mid-20s).

It is important to note that sociological factors have been linked to a disparity in diagnosis of psychotic disorders between White and non-White groups, with Latinx and Black individuals being diagnosed with psychosis at a rate of at least three times higher (Schwartz & Blankenship, 2014). Increased exposure to adverse neighborhood-level factors, individual and community-level trauma, and pre- and peri-natal complications have been cited as risk factors for psychosis that are elevated within Black and Latinx groups in the United States (Anglin et al., 2021). Diagnoses may also be given as a result of provider misunderstanding of cultural or spiritual experiences, interpreting client guardedness as delusional, or labeling a non-local as an Other, which is particularly true for immigrants seeking care (Schwartz & Blankenship, 2014). Waltman (2013) encourages providers to be mindful of a youth’s cultural and religious background, and to keep this context in mind when determining clinical significance. Providers should also ask questions about the youth’s conviction in their belief, or if they are experiencing any accompanying distress, impairment, or preoccupation, in order to evaluate the clinical significance of an experience (Waltman et al., 2013). Asking questions about whether they hold their belief more strongly than others in their community can also help determine how normative the experience. In the developmental systems focus, the macro system related to cultural attitudes and religious affiliation can also shape the individual’s experience, which can also shape the provider’s experience while working with clients with psychosis, as these labels can create stigma.

Causes of Psychosis in Children and Adolescents

Theories of psychosis tend to highlight the role of genetics, brain anatomy, neurotransmission, and stressful environmental factors. The neural-diathesis-stress model of psychosis explains that underlying vulnerability factors, such as a family history of psychosis, individual genetic abnormalities, or exposure to stress or trauma, interplay with neurodevelopmental alterations, thus increasing risk for psychosis onset or progression (Pruessner et al., 2017). Clinicians should be particularly mindful about elevated risk due to a family history of psychosis, especially first-degree relatives with schizophrenia, and should always inquire about this (Gottesman, 1991). Genetic studies are finding that schizophrenia is polygenic, or that there are many risk-variants at the allele/chromosomal level that contribute to the disorder (Owen et al., 2016). These studies have yet to translate to clinical application, but their effect on the knowledge base has been profound. Insel (2010) has called for a better neurodevelopmental understanding of psychosis, encouraging further neuroimaging and biomarker research to solidify our understanding of the neuropathology of psychosis. Neurodevelopmental factors that can lead to schizophrenia include maternal stress or infections or other complications occurring during or post pregnancy. Other physiological considerations include head trauma with loss of consciousness, seizures and epilepsy, and certain autoimmune diseases (Owen et al., 2016). Environmental factors span early childhood adversity, urbanicity, and substance use in adolescence (Owen et al., 2016).

Early-onset schizophrenia typically co-occurs with other symptom domains ranging from obsessive compulsive to mood symptoms, to neurodevelopmental problems such as language disorders, auditory processing problems, and executive functioning deficits (Driver et al., 2013). Cognitive decline is a critical marker for psychosis, and Driver et al. (2013) provide evidence to support the phenomenon of cognitive deficits leading to the development of a psychotic disorder. While the exact cause of psychosis onset from individual to individual may vary, psychotic disorders have many different predisposing factors (Driver et al., 2013).It is critical to note that especially in children and adolescents, who are still developing, early psychosis spectrum symptoms accompanied by mood disturbance (either depression or manic type symptoms, i.e., transdiagnostically) may eventually evolve into any of several disorders (e.g., a primary psychotic disorder like schizophrenia, or a primary mood disorder like bipolar). However, there can be a necessary lack of clarity in the earliest stages because the disorder has not fully developed (i.e., a pluripotential risk; see Hartmann et al, 2020).

Developmental Systems Considerations for Psychosis Related Problems in Children and Adolescents

Certain symptoms, including hallucinations, should be considered in the context of an individual’s developmental age (Maijer et al., 2019). Consider a child who is involved in the world of fantasies: believing in and interacting with imaginary friends is a common occurrence in early and middle childhood. If a teenager or emerging adult still discusses and strongly believes in imaginary friends, view this with skepticism. While this could be an eccentric personality trait or even a coping mechanism, the persistence of these phenomena could signal something more serious. After ruling out the developmental appropriateness of the context for a voice, consider that youth with mood disorders may interpret their internal dialogue as a voice (i.e., “the voice inside your head”). This can be related to their conscience talking to them, it could be the experience of their self-reflection, or, in the case of anxiety, it could be trauma reactions, depression, and “loud” negative self-talk.

Across all these manifestations, it is critical to understand how convinced the youth is in the externality of the thoughts or voice inside their head; in other words, determine how convinced they are that they are experiencing another voice distinct from their own versus their own thoughts. Furthermore, the clinician should evaluate whether there is any accompanying functional impairment or if they are experiencing any level of distress associated with the auditory perception. For example, a youth may be experiencing affective distress because of threats from the voice to harm a family member should the youth disclose their psychotic symptoms.

In terms of systems related influences, there are risk factors associated with adverse childhood experiences such as poverty, socioeconomic status, exposure to trauma, and discrimination-based stressors. Growing up with a family member with their own mental health challenges can also be stressful and may lead to a more adverse family environment, including more hostile interpersonal interactions. In fact, having a first-degree relative with schizophrenia increases a child’s risk for psychosis (Walder et al., 2014). On the other hand, strong social supports and involved families can also serve as protective factors in a youth’s life. So, while there can be a family history, the family can also be the medicine. Also, consider a youth’s greater environment, including their neighborhood and the safety of that environment and the vulnerability it can generate. On the opposite end, consider the potential resilience-promoting role of a youth’s schoolteachers, who could be helpful in identifying students with rapid cognitive decline or declines in academic or social functioning, and who could refer a child for evaluation for mental health services. Lastly, keep in mind ethnic and cultural contexts; religiosity has been suggested as a method of coping with hallucinations in children and adolescents (Maijer et al., 2019), and in adult populations, there have been differences in understanding of hallucinations comparing European and African samples (Furnham & Igboaka, 2007; Maijer et al., 2019).

Assessment of Psychotic Disorders in Children and Adolescents

Assessment of a psychotic disorder requires ruling out any other disorders that may better explain the presence of psychosis. The differential diagnosis process works through ruling out whether the presentation is related to the effects of a substance (e.g., synthetic cannabinoids) or a medical issue (e.g., head injury, viral meningitis), then understanding the specific primary disorder (e.g., is psychosis primary or is it secondary to a depressive disorder), which can be determined based on the timing of onset of the psychosis symptoms in relation to other psychiatric/medical symptoms. As with other diagnoses, differential diagnosis is critical to rule out malingering or a factitious disorder. Keep in mind that reports of psychotic experiences from youth can be accompanied by clinical features like being hesitant, confused, or embarrassed to disclose. Psychosis symptoms are typically not a readily shared experience, in part due to the stigma surrounding a diagnosis of schizophrenia. It is important for providers to develop good rapport with their clients and to be patient if a youth needs time to become comfortable and trust their provider before opening up.

Earlier in the chapter, psychosis was largely defined by the presence of hallucinations and delusions; however, this does not paint the entire picture. These are known as the positive symptoms of schizophrenia, due to the presence of experiences that are not ordinarily present. Hallucinations have different presentations, with auditory hallucinations such as hearing voices being most common. Other types of hallucinations include visual hallucinations, olfactory/gustatory hallucinations (related to smells and tastes), and tactile hallucinations (related to the sense of touch). A classic example of a tactile hallucination is the feeling that bugs are crawling on the skin, which is also a common phenomenon for people undergoing opioid withdrawal. Delusions are the other type of positive symptoms, and they span fixed false beliefs such as persecution (e.g., the government is out to get me; others are going to hurt or harm me) to grandiosity (e.g., I can jump off a building and not get injured; I have been chosen by God for a special role).

There is also a set of negative symptoms that may develop, which are deficits in behaviors that are experienced by a typical individual, and include affective flattening, anhedonia, avolition, and alogia (American Academy of Child and Adolescent Psychiatry, 2018). Though negative symptoms may appear like depressive symptoms, a key question that can help (though doesn’t always) differentiate is to ask about the mood itself (e.g., “Do you feel sad, down, or blue?”) Some individuals with negative symptoms will not endorse these questions. Additionally, individuals may experience disorganized speech or behavior. Individual presentations of psychosis are quite heterogeneous.

In assessing a youth for psychosis-spectrum symptoms, while family members may be a valuable source of information for providing their observations on the effects of negative or disorganized symptoms on a youth’s demeanor, they can often be unaware that their child is experiencing positive symptoms like hallucinations. Again, developing a good rapport with your client is of the utmost importance.

Clinicians should be aware of what is known as subthreshold or “prodromal” psychosis, which is the period of subthreshold signs and symptoms that precede the onset of threshold psychosis (Larson et al., 2010). A comprehensive assessment and ongoing monitoring of symptoms is crucial to catch this prodromal period in both newly established and well-established adolescent clients, as the duration of a prodromal period can last from a few weeks to several years (Larson et al., 2010). Some youth may never develop a psychotic disorder; that is, they may never cross the threshold and may continue to experience subthreshold symptoms for years, in which case a personality disorder diagnosis (e.g., schizotypal or paranoid) may eventually be considered in adulthood. Other youth may experience time-limited subthreshold psychosis symptoms that fully resolve. These symptoms may include disturbances in perception, cognition, language, motor function, and level of energy (Olsen & Rosenbaum, 2006), and while these can certainly be comorbid, they are not required according to current definitions of at-risk states.

Comorbid symptom domains may also be present during the prodromal period (Larson et al., 2010) including symptoms of depression, anxiety, or trauma. Prodromal symptoms may occur with less frequency, shorter duration, or reduced severity than clinically significant levels of psychotic symptoms (Yung et al., 2005), though they still may be worthy targets of treatments. Another way to conceptualize such presentations is through Attenuated Psychosis Syndrome (APS). This is defined by the presence of delusions, hallucinations, or disorganized speech in attenuated form; however, the severity and frequency warrants clinical attention (APA, 2022). APS features can occur for the first time in adolescence (Arango, 2011; Tsuang et al., 2013), and represent a large majority of clinical high-risk symptoms for individuals with psychosis (Fusar-Poli et al., 2016).

Common Assessment Tools for Psychotic Disorders

One of the most commonly used disorder-specific diagnostic instruments for assessing and diagnosing psychosis is the Structured Interview for Psychosis-risk Syndromes (SIPS) (McGlashan et al., 2001). This clinician administered semi-structured interview assesses the severity of 19 positive, negative, and disorganized symptoms on a 0-6 scale, including probing in detail about an individual’s experience, degree of conviction/meaning, degree of distress, interference with life, frequency/duration, age at which they first had the experience, and how the experience may have changed over time. Positive symptoms rated at level 6 indicate the presence of a psychotic disorder. Positive symptoms rated at levels 3, 4, or 5 l that began or worsened in the past year and occur at an average frequency of at least once per week in the past month may meet criteria for Lifetime Attenuated Positive Symptom Syndrome (APSS).

The Comprehensive Assessment of At-Risk Mental States (CAARMS), more commonly used outside the United States, also assesses for the presence of subthreshold and threshold psychosis symptoms (Yung et al., 2005). Two transdiagnostic assessment tools include the Kiddie Schedule for Affective Disorders and Schizophrenia (K-SADS) and the Structured Clinical Interview for DSM (SCID). After rigorous training on these diagnostic instruments, clinicians will be able to comprehensively assess for the presence of psychosis-spectrum symptoms; at the very least, they are invaluable tools for starting a conversation with a client to understand what their experiences are like for them.

Apart from conducting full-length diagnostic interviews, the Prevention through Risk Identification, Management, and Education (PRIME) Screen can also be a useful screening tool for quickly assessing the presence of positive symptoms (Miller, 2004). Based on the SIPS, this 12-item self-report measure asks individuals to rate on a scale from 0 (definitely disagree) to 6 (definitely agree) whether they have had a certain sensory, psychological, emotional, or social experience within the past year. For endorsed items, youth are then probed about the first time they had that thought or experience. Calkins et al. (2017) developed age-norms to accompany the PRIME Screen and have shown that younger community youth in a nontreatment seeking sample have higher total scores compared to older individuals.

Intervention with Psychotic Disorders

In their review of treatments for psychotic disorders in children, Hrdlicka and Dudova (2015) found that antipsychotic medication is the routine treatment, offering the following as medications shown to have efficacy: olanzapine, aripiprazole, quetiapine, risperidone, and lurasidone. These are known as second-generation antipsychotics (Hrdlicka & Dudova, 2015), as they were part of the second wave of medications developed to treat psychosis.

However, it is critical to understand the risks, benefits, and side effects of antipsychotic medications. Prescribing antipsychotics to a child is a serious treatment decision. There are known side effects with antipsychotic medication, particularly with the second-generation drugs. The following are common side effects: metabolic side effects such as weight gain, diabetes, and hyperlipidemia; akathisia, or the subjective feeling of restlessness and agitation; and tardive dyskinesia, which is characterized by jerking muscle movements, being “tongue-tied,” or lips being pursed uncontrollably (Hrdlicka & Dudova, 2015). Monitoring is even more critical for medication treatment of psychosis, especially if the client is required to be adherent and committed to the treatment. If there are issues with commitment to the treatment plan, injectable medications can be an option, in which the patient would receive one administration of medication that can last 30-90 days (Maloney et al., 2015).

Psychosocial Interventions

While antipsychotic medication is a common treatment modality, not everyone may experience symptom reduction with medication treatment alone. Psychosocial treatments center on psychoeducation for clients and family members. Early identification and initiation of treatment can be preventative of severe psychosis and consequent disability (Armando et al., 2015; Maloney et al., 2012; Maijer et al., 2019). Social skills or coping skills can be introduced to cope with the initial distress of receiving a psychosis diagnosis and of the symptoms themselves (Maijer et al., 2019; Morrison et al., 2020). In another systematic review, Anagnostopoulos et al. (2019) reported that treatment recommendations for the psychosis population should center on cognitive-behavioral therapies (CBT) for psychosis and family-based interventions, both of which are aimed at limiting the distress related to experiencing psychotic symptoms and buffering against any consequent functional impairment. Two forms of CBT are specific to the treatment of psychosis: CBT for Psychosis (CBTp) and Recovery Oriented Cognitive Therapy (CT-R). The latter focuses on empowerment and resiliency, with a focus on how that person aspires to live a meaningful life (Beck Institute, 2020; Grant et al., 2012). It is also effective at addressing motivational issues surrounding engagement in treatment. CBTp emerged prior to CT-R and is more focused on symptom reduction to improve quality of life (Beck Institute, 2020; Sönmez et al., 2020). In a sense, one is thinking of adding something to improve quality of life, whereas the other considers taking away something to achieve the same end, resembling positive and negative modes of reinforcement.

Early intervention can be very protective for youth experiencing onset of a first episode of psychosis by providing them with the tools to challenge the reality of their beliefs. High rates of subthreshold psychosis have been found in community youth samples (Calkins et al., 2015), highlighting the need for referral to psychosis specialty services, which have been found to be more effective in treating psychosis symptoms compared to community care (Kane, 2016). In 2013, the United States Congress allocated funds to be distributed through the Substance Abuse and Mental Health Services Administration (SAMHSA) to fund evidence-based Coordinated Specialty Care (CSC) programs for individuals with early onset psychosis across the United States. By 2019, there were first-episode psychosis CSC programs in all 50 states. The Psychosis-Risk and Early Psychosis Program Network (PEPPNET) has an online interactive directory that individuals and families living in the United States can access in order to locate their nearest CSC program. The Early Psychosis Intervention Network (EPINET) has a similar interactive map on their website. The core components of the CSC model include psychotherapy, medication management (if warranted), in addition to family psychoeducation, supported education and employment services, cognitive remediation, and peer support. The key to improved outcomes for youth is early detection and linkage to appropriate care.

Clinical Dialogues: Working with Psychosis in Children and Adolescents with R. Marie Wenzel, MSW

Sean E. Snyder, LCSW: Youth with psychosis is a population that can fall through the cracks, so I’m pleased to have our readers learn more about this population.

So, let’s start from the beginning, with the engagement (i.e., the multidimensional commitment to treatment). When families come to you, how do you approach joining with them around their issues? There can be a lot of confusion or fear about what’s happening, considering that psychosis does deal with reality testing: “What is this that am I experiencing? Is this a voice? Is this my thought?” How do you join with your clients when they initially meet you all?

R. Marie Wenzel, LSW: Each approach is tailored to the individual and their individual circumstances. We have a whole spectrum of people who come to the program with lots of family support, with no family support, who are in the foster care system, who are experiencing homelessness. It really depends on who that individual is and what their immediate needs are.

We approach the emergence of psychosis as an emergency situation that needs immediate attention. Given this, we really try not to have wait lists, which is really important so that we can directly call and get them connected to services right away. We do have a pretty rigorous intake process where we’re really trying to define, “Is this psychosis? If it is, when did it start?” In that process, we’re talking to everyone connected to that loved one. We’re trying to talk to everyone in the very beginning to put together a timeline to really nail down when these things really started to happen. When did disruption in functioning happen? It’s a lot of gathering history in that same context. Then we share with them what we’re doing and why we’re doing it and really explaining to them along the way about how our services are working. But we do it in a way where language really matters.

We don’t really often talk about diagnoses with families or participants unless they’re bringing it up, unless they really want to know for some reason, which often is not the case. We’re talking more around goals and challenges, thinking through the strategies that have worked in the past with helping their loved one but then also recognizing that we’re giving a lot of psychoeducation and information around what could be happening now. It’s very general because we don’t want to prescribe this idea that someone has schizophrenia if they don’t, and because of the stigma related to psychosis specifically, we really try to really talk about their experience. For instance, “Do you hear a voice? What does it say? Or do you have a hallucination?” We’re trying to change that language, change that narrative and help families. We try to ease the impact of what that feels like so that they can become a little bit more open to our services.

I should note that everyone in the general population experiences some psychosis at some point, not just those with a psychotic disorder, for example, if you’ve felt your phone vibrate in your pocket when it wasn’t vibrating. We’re on a spectrum. We have these moments where we may feel out of touch with reality, like the phone example.

A lot of times they get a diagnosis of schizophrenia in the hospital setting, which then adds to the chaos and propels the family into this spiral of fear because of the stigma that most people have associated with that. That fear can often lead to denial, which can really impact our ability to engage a family or a participant if they’re at the point where they’re saying my son doesn’t need your program because he doesn’t have schizophrenia. We want to help figure out what’s going on to get them back on track. So, you mentioned they haven’t been going to school for a couple of weeks. What can we do to help you help them get back in school? We’re shifting away from the diagnosis and experience and putting it back on how we can get you back on track.

Engagement looks really different. We have a little bit of flexibility, and I joke that we walk a fine line between assertive and aggressive engagement because we know by the nature of psychosis itself, engagement is one of the biggest challenges. We’re working against negative symptoms, like the fact that people want to isolate and feel safe isolating. If we were talking about depression and anxiety, and you were saying, “Sam, your therapist is going to show up at your door, knock on the door and say you missed your appointment yesterday, what happened? I’m here to see you.” That might be a little bizarre, but for us, that means it could be that somebody was sitting in their room for eight hours responding to internal stimuli, and they weren’t able to answer the phone. That’s why we’re here.

Our biggest goal is to bolster as many social and natural supports that a person has that we can lean into. Then it’s moving at the pace of the participant. I’m working with a 16-year-old who says, “Nothing is wrong with me; my mom’s the problem, right?” Okay, how can we help you figure out how to work with your mom and live with your mom? It’s really using their language, what they want to work on. In that process, we begin to work on managing psychosis, managing symptoms of psychosis, medication management, things like that.

Snyder: It sounds like it really is the infusion of the recovery orientation, like this thing happened to you, and it’s “How can we respond to that?” It’s really phenomenological, e.g., “This thing’s happened. What can we do to support you to improve the quality of your life?” I love that you said natural supports, being in the community with people harnessing what’s readily available to them as opposed to the complete opposite of when we think of psychosis. The other end is thinking about the stigmatizing, institutional approaches.

This might be part of the education, let’s say. Are they interested in knowing more about why this is happening to me?  Are they’re asking you, “Why is this happening to me?” I know you tailor to individual cases, but on the whole, how do you explain that?

Wenzel: We usually explain psychosis in a way where it’s your experience of reality is different than other people’s experiences around you. Oftentimes, we don’t necessarily know why it’s happening, and we’re comfortable in saying that we don’t know and that why it’s happening often really is not the most important thing. Now that it’s happened or happening, it’s what do we do with it? How do you live with it? How can we make it so it’s not stressful?

I would be honest and say we don’t get asked the “why” so much. The biggest challenge comes with getting people to understand the idea that intervention isn’t, “Here’s a pill, and it goes away, and you don’t have any issues anymore.” This is something that you might have to manage more long term, and we might have to change the approach several times in the process; it’s not one size fits all.

It feels experimental, and it feels experimental to a person and their family. “What do you mean you don’t know why that medication isn’t working?” Things like that, where it’s not a perfect science, it is a lot of trial and error. It’s a fine line between not making someone feel that they have a chronic illness, and they’re condemned for life, but also not something where you’re going to be perfect tomorrow.

Snyder: You mentioned the timeline and how important that is to understand early on. And then you were connecting that with how you understand the context of the psychotic symptoms. Is that the critical reason that you are focused on making sure that you understand the timeline of events?

Wenzel: The research shows that the duration of untreated psychosis, or what we call DUP, has a huge impact on the efficacy and the outcomes of our programs. The sooner you intervene in somebody’s psychotic experience, the better. Ideally, the World Health Organization says less than three months since onset. There’s a switch that happens at the onset of someone’s psychosis. They’re still able to have what we call insight, that they can identify that something’s not right. Once they externalize to thinking, “The government is stalking me,” or someone else is following them, the work becomes harder and you’re looking at a longer-term recovery. We can and have successfully intervened really early with people where then they have not had another psychotic experience again while in our program.

So, once you start getting into, like the two years plus of untreated psychosis, it becomes much more challenging. So that’s why we’re nailing down questions like when did they start having the positive symptoms? So, hearing a voice, having a hallucination, and then they might say, “Oh, that happened six months ago.” But then they’ll tell us in 10th grade they got into a lot of fights. They were agitated a lot. They stopped hanging out with their friends. So, we would start to then go back to 10th grade. What was happening then? Because as soon as we can start to see a change in someone’s functioning—like hanging out with friends and family, participating in activities of enjoyment and pleasure, participating in school appropriately—once you start to see those things change, we can start to nail down that there were probably psychotic symptoms happening around that time. But sometimes the referral comes much later than the initial expression of symptoms.

Snyder: I also want to ask you, do you distinguish whether the psychotic symptoms that are now being identified were related to another diagnosis, like trauma and PTSD or even depression with psychotic features? Does that impact how you work with someone?

Wenzel: It’s essentially nonaffective and affective psychosis, and at Peace, we treat everyone who has a psychotic experience. However, the research that created early intervention programs for psychosis was only targeting people who had schizophrenia specifically. So, the research body that informed the model for coordinated specialty care only included working with people with schizophrenia. We’ve built the program off of that research. We’re now finding that it’s challenging for us because we see people with many other presenting challenges other than psychosis, but we can target psychosis and work on other issues.

The development of CBT, and we use CT-R, which is recovery oriented cognitive therapy, was developed out of the Beck Institute here in Philadelphia. Those interventions, again, were developed using a cohort of people who had exclusively schizophrenia. When you add MDD to that or bipolar disorder to that, it changes the treatment. We’re not just treating the psychosis, but we now have to adapt and treat some of the other challenging problems. But we do see everyone. Trauma related psychosis is really, really big in Philadelphia and is the least likely to respond to antipsychotic medications. A lot of times we’re looking at how deep the trauma work is that needs to be done, because resolving the psychosis is based on resolving the trauma.

Snyder: It seems like it is a good point to juncture into with the assessment you mentioned about timelines and parsing out when what’s happening. So, you get the youth and the families engaged to come for an assessment. Do you use any standardized scales, and if so, what’s the rationale for using or not using them?

Wenzel: So, we’re part of the HeadsUp network, which is the Pennsylvania Early Intervention Center out of the University of Pennsylvania, and we have a battery of assessments to use. We do a standard biopsychosocial and a psychiatric evaluation. Usually those happen once we’ve already determined that someone’s eligible for the program. I want to say the only other exclusion criteria we have is IQ less than 70 and moderate to severe autism disorder because we’re using a primarily cognitive intervention. We do the Global Functioning: Social and Role assessments, so that’s an assessment done by the clinician once the biopsychosocial is done. Essentially it’s like an old Global Assessment of Functioning (GAF), so we can assess changes in their social and role functioning over the past year prior to enrollment in our services.

We do the BPRS, which is the Brief Psychotic Rating Scale, which the psychiatrist completes. And that’s also done based on the psychiatrist’s interpretation of the person and formulation of the person. Then we have the GASS (Glasgow Antipsychotic Side Effect Scale). So that’s measuring side effects of medications like involuntary muscle movements. Because of the antipsychotic medications, there are often a lot of really extreme side effects, and because we’re working with young people, the more extreme the side effect, the less likely they are to use medication. We want to try to monitor and manage that as much as possible, so there’s also a medical monitoring form that the nurse does for monitoring metabolic changes, again, because of the side effects of the medications. The population we’re working with is at a higher risk for metabolic issues in general, then you add these antipsychotics. We’re trying to manage that and manage physical health and wellness at the same time.

The participants complete self-report skills, so they do this independently or they do this with the support of their therapist, the peer specialists, the case manager, whoever they want support from. Then they do the Lehman Quality of Life Functional Assessment that’s measuring happiness and how happy they are with their life. There’s the Questionnaire About the Process of Recovery (QPR). We have the Mental Health Statistics Improvement Program (MHSIP) Youth Services Survey (YSS) that’s measuring how satisfied young people are with the mental health treatment they’re receiving and the services provided at the program. It’s really trying to link the skills they learn with a progress measure for them, as well as keep it relevant and give appropriate feedback to us.

Snyder: It’s interesting to see the different aspects with all the assessments. Of course, antipsychotic medication is very serious, seeing that you’re monitoring the medical things and the side effects. I was really happy to hear about the overall quality of life and happiness questions because that’s a very recovery-oriented approach where it isn’t focusing on symptom reduction but keeping sight of the big picture and all these different systems in the individual’s life.

Wenzel: We use a lot of scales, but we try to make it as personable as possible. It’s not lost on us who the population is that we’re working with. We’re working with predominantly African American, adolescent males in Philadelphia. This group of people is often not included in the research and outcomes that are being measured. We carry the state that way in terms of being able to get what’s happening in this urban environment with people in extreme poverty to be able to compare that against what’s happening in the rural parts of Pennsylvania and what’s happening with their young people.

For clients, we do have the ability to show the changes over time to them if they’re interested, so the clinician is able to see the effectiveness of their therapeutic work over time. “Well, back in 2019 look at how isolated you were. But look at you now. Look at this change.” And we are encouraging conversations about real life issues like trouble with their significant other or family, or even topics like erectile dysfunction after starting a medication. We need to be real with them.

Snyder: That’s why I love measurement-based care. It shows the person you’re working with that, “hey, this is working, or this isn’t really working. Let’s see what adjustments we can make.” Also, as clinicians, it’s nice to see that. We don’t get a lot of butterflies, or sometimes there’s so much compassion fatigue that when you measure it, you can hopefully see that you’re making a difference. I’m always a big fan of measurement-based care.

Wenzel: The data will show that about 80% of our participants report trauma, which is, again, really high. But I would argue that probably ninety-nine and a half percent of them have all experienced trauma. We’re talking tons of trauma and tons of poverty related challenges.

Snyder: You and I met because those same young people who are faced with lots of challenges every day in deciding a good choice or a bad choice and choices that have consequences or what they’re weighing out these issues, and they end up in juvenile detention.

Wenzel: A lot of times the psychosis is not the primary issue that we’re looking at. It’s just a complicating factor in an already very complicated system and life. So, what I would say is that we very rarely diagnose people with a schizophrenia diagnosis. Sometimes they come with that diagnosis, which might be what’s in the chart. But if our doctors are doing the diagnosis, they’re getting an unspecified psychosis diagnosis, that then might be changed later if it needs to be changed, but it often isn’t changed if it’s not required by insurance for medication or something like that. People who do have mood disorders with psychosis might get diagnosed with bipolar disorder. So, what we typically see is people who already have a bipolar disorder diagnosis before they develop psychosis. The psychosis symptoms developed a year or so after, maybe several years after. So, it’s figuring out what’s happening. Are they in a state of mania? Or is the issue a psychotic break. What’s going on there? I would say everyone has trauma, though. That’s definitely a thing with our population.

Another important topic is substance use. The drug of choice for people with psychosis in our program is marijuana. It affects dopamine receptors, so there’s the neural pathways there that are similar to psychosis. It’s tough for individuals because it’s such a normalized substance in our society today, so telling an 18-year-old kid to not smoke weed with his friends is really hard. We don’t see opiate abuse in this program. That’s also very interesting. We do see alcohol, we see an increase of alcohol use in the program over time, but we attribute that mostly to people turning twenty-one-years-old while in the program and being able to legally consume alcohol. There’s definitely a lot of tobacco use with people with psychosis, and a lot of that is related to their medications, oddly.

It goes beyond the purely clinical too. At Peace, I would say our biggest challenge is the trauma history, and then second to that is probably the challenges related to being in poverty. So, transportation, employment, food, heat, housing. For families who have a single mom with several children, often her 16-year-old who just developed psychosis is not her primary concern. It can become really complicated. We try to come in as a resource for that young person, but also as a resource for that family. We know that if we can help mom have heat and food to eat, that she’s then able to support John and log into our virtual family therapy session on Wednesday. She’s more willing to buy into us because she knows that we can help her, too. We identify small gifts that we can give, even if it’s the gift of having a session with a loved one around some strategies on how to get their person to do the things they want them to do. They want them to get up and shower and eat breakfast. How can we give them some strategies to help do that in the home? Because they’re really different specific things.

There are other functional things too. So, talking to a person with psychosis from behind them when they can’t see you, for example, can make it sometimes difficult for them to decipher. “Is someone really talking to me or is this the voice in my head?” We suggest to mom that instead of yelling from the living room, come into the room, look and make eye contact and say the same thing. They’re much more likely to respond to you because they can see you and know that you’re talking directly to them. So, it can be something that small that I yell at my kids from rooms away and they can’t see me. And that’s a very normal, common thing to do. But that’s not going to be effective to get someone who’s maybe actively experiencing hallucinations or voices to get them to do that thing. So, some small things like that.

Snyder: That seems like a nice segue into the interventions. Can you talk about those functional things and how you can intervene with the family system or just the things that are in the person’s life? It’s not just cognitive restructuring, but we have to think about those everyday experiences, too.

Wenzel: Most of the interventions we use are more functionally based. We don’t treat to symptom elimination; we treat the symptom management, with the least amount of medication possible to make sure that voice or hallucination is not distressing anymore. You can continue to do what you were doing. So that person might still hear the voice. But it’s not shouting. It’s lower. I can continue to log in to school and talk to my teacher or I can get myself up and go to work. If we medicated someone to symptom elimination, they wouldn’t have anything left to function. They wouldn’t have the motivation and ability to function because of how the medications work. So, because of that, then we have to come up with other ways. How can you tolerate the symptoms? So, we work with a stocker at Walmart whose voices were yelling at her while she was taking a break from stocking her shelves. She called her therapist and the therapist picked up to talk to her for ten minutes. She was able to do some grounding exercises, stop the voices and was able to return to her job instead of having a full crisis, and needing to go to the hospital or maybe even losing that job.

There are strategies we can confirm. We offer 24/7 on call support so families or participants can call, and they’ll get a clinician twenty-four hours of the day to be able to intervene in an emergency situation like that, or help with medication management, things like that, whatever comes up. That’s a big thing that we’re really addressing now is how to safely support families in the community, and we avoid the gateway to hospitalization in Philadelphia, which is the police. How can we be the buffer between a family and a participant and the police when they’re responding? So, we have all sorts of new strategies that we’re using and trying and testing and trying to support our families because they don’t want to call the police. Yet they’re in situations at times where they really need help. For us, it’s also making sure that families can trust us. We represent a system that often shouldn’t be trusted or couldn’t be trusted historically around an illness that people don’t want to have and don’t want their loved one to have. So, how can we make it as soft or as approachable as possible? We do as much as we can.

Snyder: I think you’ve covered a lot of what the recovery oriented cognitive therapy way is, where it’s adding quality of life, versus CBT for psychosis, which is really about symptom reduction. And then talking about what does that look like in the community, like when you mentioned the client that called their therapist while they are at work. Really thinking about those functional things. I guess are there any other more direct clinical interventions, for the readers of our book that you would say are some core things to be mindful of?

Wenzel: We also use them. Especially around substance use and then other choices. So, there are definitely folks, again, who experience metabolic challenges and changes due to medications, so we use interventions around developing exercise routines or changing eating habits, things like that. We’ve been trained in a specific trauma intervention in our program as well that uses workbooks and things like that. With that foundation in trauma, we also use the CT-R and do have monthly consultations with Dr. Michael Garratt, who is trained in psychodynamic work. So, for the people who are at the point where they do want to process the meaning of their delusional content or they do want to process some more of the structure of their psychotic experience, there is an opportunity for that to happen as well through psychodynamic approaches. There are definitely people in our program who are much more interested in doing the psychodynamic talk therapy versus the activation and behavioral and functional interventions that we’re using with some other folks. I have a lot of clinicians trained in psychodynamic work. It can be a learning curve for them to take a step back when we’re talking about engagement work, which is what would happen in the CTR format. But it’s a nice blend, and it’s nice to be able to help people work through their experiences and make the connections in their psychotic experience. But not everyone’s at the place where they can do that.

Snyder: There are power decisions made around medication, because it sounds like you’re really trying to manage symptoms and not have a lot of overmedication or misuse of medication that really has so many side effects.

Wenzel: Our doctors follow a shared decision-making approach that comes out of Temple by Dr. Elizabeth Thomas and Yaara Zisman-Ilani. They’re out of Mark Salzer’s group. So, they developed the shared decision-making tool that we like. Their researchers did some research with our participants, and we use that now. So, the providers use that and it’s not with everyone again. But for some people, it’s nice to be able to weigh out their decisions and what’s more important. But ultimately, the participant makes the decision for themselves. That can be really challenging because there are families who want their loved one on a specific medication, on a different medication, on a higher dose or on this, or they don’t want them on medication and the person wants to be on medication.

It’s always a dance. But ultimately the participant makes that decision, and they can tell us, “I don’t want medications, I want that specific medication.” I mentioned our process around 302s. What we’re trying to do now is get more proactive in developing advanced directives when someone is well enough to be able to tell us, “OK, when I’m not well, this is the person I want to intervene. This is the hospital I want to go to. This is the medication I absolutely will not take. This is the medication I will take. I do want this is.” I’m trying to get people to develop their plan in advance so we’re ready to go if something happens. “OK, Mom, you’re the one intervening.” We give them control. How can we give them the control when they are not well enough to be able to make those decisions?

It’s really hard because, again, people have advanced directives, and they think that we’re talking about death. They get very like “I don’t want to talk about that.” So, again, language matters. I would say that’s another thing on language matters. We are not saying that you have to come to therapy, that you have to see your therapist, that there’s something wrong with you. We say we’re a bunch of people who want to hang out with you. We have people who specialize in different things. If you need help with this, this one can help you. If you need help with that, that one can help you. But whatever you want to work on is what we’re here for.

We use the term entourage, which flies with some folks, and we really try to use their language. If they’re saying that I have a connection to spirits. Cool. You’ve got a connection to spirits. Who are we to tell you that that is something else? So, using the language that the participant is using to describe their own experience, working with families around reality testing, because a lot of times they want a reality test. You might as well bang your head against the wall, like try to convince someone who believes something happens, that they shouldn’t believe that. Then you have families who are doing this all the time, and they’re frustrated all the time.

Snyder: Like DBT skills like radical acceptance and teaching opposite action. That sounds like that’s a tall task with working with families because there’s so much going on. But it sounds like you do such great work and impactful work.

Wenzel: We keep people out of the hospital. The biggest goal of the program is to keep people out of the hospital. If they end up going to the hospital, have the length of stay be as short as possible. Also, to keep people at work, in school, volunteering, being active in some capacity in their community, social sphere, family, whatever that looks like. And ideally, staying off of Social Security because we’re able to keep them working. So those are the main goals of the program.

Snyder: That may be a good place to end; when working with psychosis, we are working to help folks stay active in daily life, whatever that means to them. It is all about recovery and quality of life. To do that, we need the clinical awareness and techniques of ensuring the accuracy of the timeline to be as early and targeted with intervention as possible. It’s organizing things with them, and that process needs always to keep the patient at the center of care, and focus on recovery, considering the lives that these clients want to live, and how to assist them in living a fulfilling and meaningful life.

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