Empathy is a core component of nursing practice.1 In nursing, empathy is commonly defined as recognizing, understanding, and feeling from the patient's perspective, and experiencing emotions such as care, concern, or distress as a result of being exposed to a patient's situation.2,3 Empathy is beneficial for nurses and patients alike, but nurses who experience repeated, prolonged exposure to patients' trauma and suffering can develop empathy exhaustion (also known as empathy fatigue or compassion fatigue), which can have serious effects on the nurses' mental, emotional, and physical health.3 This article looks at the role of empathy in nursing, the causes and symptoms of empathy exhaustion, and steps nurses can take to address it.
Empathy in Nursing: Why It Is Important
Peplau, a nurse theorist who examined the nurse-patient relationship, defined empathy as the ability “to be able to sit at the bedside of any patient, observe, and gather evidence on the way the patient views the situation confronting him, visualize what is happening inside the patient, as well as observe what is going on between them in the interpersonal relation.”2
Davis described an “empathy episode” as comprising of the following2:
Antecedents to experiencing empathy in the specific situation, such as preexisting factors of the nurse and the patient;
Processes, including perspective taking;
Intrapersonal outcomes, which include emotional and cognitive reactions to another’s experience; and
Interpersonal outcomes, where the empathizer engages in a particular behavior.
Although the terms empathy and compassion are sometimes used interchangeably, some have proposed that empathy entails being able to feel another person's suffering, while compassion includes both feeling and being willing to alleviate another's suffering.4,5 In addition, some researchers have equated empathyexhaustion with compassion fatigue, while others conceptualize the 2 as related but distinct conditions, with a loss of empathy leading to compassion fatigue.6 Empathy exhaustion can be a contributing factor to burnout, which is chronic stress that can occur in any occupation and is characterized by emotional exhaustion, feelings of depersonalization, and career dissatisfaction.7
Evidence suggests nurses' empathy can have beneficial effects on their patients, such as improved satisfaction, better adherence to treatment, and better overall health.1,5 Empathymay also improve nurse/patient communication, allowing nurses to better recognize and advocate for their patients' needs.5 Practicing empathy can also help nurses by allowing them to experience less distress and work-related health issues, making them less likely to burn out and better able to provide effective care.1,5
How Empathy Exhaustion Affects Nurses' Mental Health
Empathy exhaustion can occur after prolonged exposure to stressful and taxing patient encounters. Symptoms of empathy exhaustion, include apathy, fatigue, irritability, lack of productivity, poor judgment, callousness, and feeling emotionally overwhelmed and desensitized to the needs of others.8 Symptoms can be categorized as physical, psychological, and behavioral9:
Some researchers consider emotional exhaustion to be a form of secondary traumatic stress resulting from repeated exposure to patients' injury and trauma, with symptoms similar to those of posttraumatic stress disorder, such as intrusive thoughts, irritability, and avoidance.8,9
Empathy Exhaustion in Critical Care Nursing
While empathy exhaustion among nurses can occur across multiple specialties and settings, it may be more likely in nurses who work in critical care. Nurses working in settings such as oncology or in an intensive care unit (ICU) care for patients with serious illnesses and provide end-of-life care, which can cause distress that leads to emotional exhaustion.
A systematic review and meta-analysis of studies looked at secondary traumatic stress and burnout among oncology nurses, as measured by the self-report Professional Quality of Life Scale (ProQOL).10 Approximately 67% of these nurses experienced secondary traumatic stress.10
Another study used the ProQOL to examine the incidence of secondary traumatic stress and compassion fatigue among 598 health care professionals, including 358 nurses/midwives, who worked in an ICU or other unit that involved treating chronic or serious illnesses.11 Levels of secondary traumatic stress and compassion fatigue were significantly higher in nurses compared to doctors (P =.007) and in those who had previously experienced a traumatic event (P <.004).11 Secondary traumatic stress and compassion fatigue were correlated with increased levels of burnout.11
Addressing Empathy Exhaustion in Nursing
Strategies nurses can use to prevent or alleviate the effects of empathy exhaustion often focus on being aware of the condition and practicing self-care.9 Nurses can beginby learning about emotional exhaustion, its symptoms, and its consequences, and assessing themselves for symptoms using a tool such as the ProQOL.12 Commonly suggested interventions include the following9:
Exercising
Eating a healthy diet;
Maintaining strong social networks; and
Participating in activities that promote relaxation, such as art, spirituality, yoga, and meditation.
Other possibilities include taking adequate time for breaks during and between shifts, and maintaining a balance between work and time off.12 In some cases, a nurse experiencing empathy exhaustion may benefit from psychotherapy. Health care organizations can support nurses by providing educational programs about empathy exhaustion, resiliency training, and employee assistance programs. Interventions that offer emotional support, such as structured support groups and debriefings about difficult clinical situations led by trained professionals, may also help counteract empathy exhaustion.9 Formal educational interventions that have been used to address empathy exhaustion include the Accelerated Recovery Program, Mindfulness-Based Stress Reduction, the Academy of Traumatology/Green Cross standards of self-care, and the Creative Compassion Model.9
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As the prevalence of mental illness continues to increase, so does the need for access to effective treatments, including psychotherapy. Since the onset of the COVID-19 pandemic, the use of online therapy (also known as virtual counseling, telepsychiatry, telepsychology, and telemental health) has greatly increased, expanding the availability of mental health services for individuals for whom in-person therapy is not available, affordable, or convenient.1 This article describes the potential benefits and drawbacks of online therapy for clinicians and patients alike.
Online Therapy in the Era of COVID-19
Virtual therapy started in the 1960s to provide care to patients in rural and isolated areas.2 The use of telemedicine expanded exponentially during the COVID-19 pandemic, but even in the years leading up to the pandemic, the use of virtual mental health services had been increasing. A survey of state mental health facilities found that the use of telepsychiatry increased from 15% of facilities in 2010 to 29% in 2017.3 With the social distancing and isolation brought on by the COVID-19 pandemic, virtual mental health care became even more widely available, and psychiatric clinicians were able to treat patients remotely at a time when it was greatly needed.4
Psychotherapy with a licensed therapist is now commonly available via telephone or video conferencing technology.1 Online therapy can take place via videoconferencing on a computer, tablet, smartphone, or other device using software that is compatible with the standards of the Health Insurance Portability and Accountability Act (HIPAA). Audio-only therapy sessions over the phone may be an appropriate option for patients who do not have internet access.4
Several organizations offer resources to help clinicians who want to provide mental health care virtually. The American Psychological Association has established Guidelines for the Practice of Telepsychology.5 The American Psychiatric Association offers a Telepsychiatry Toolkit that provide extensive guidance on the technical, practical, and financial aspects of providing psychiatric care virtually.6 The American Telemedicine Association has similar resources available for a wide range of telehealth services.7
Benefits of Online Therapy
Compared to in-person therapy, online therapy offers several logistical and practical advantages. The availability of virtual appointments makes it easier to treat people who live in rural or remote areas and, in general, makes it easier and faster for patients to get an appointment, which allows for more timely evaluation and treatment. Online therapy can also reduce stigma related to mental illness for individuals who are hesitant to make in-person appointments.8 Virtual therapy also can be cost-effective because it does not require transportation, parking, or taking additional time away from home or work to travel to appointments.8
For clinicians, the benefits of online therapy include increased flexibility, which might reduce burnout.8 Therapists can schedule to see patients in-person or virtually, and virtual appointments can be done from home.8 Increased telecommunication options have allowed mental health clinicians to expand their services, potentially increasing revenue. Virtual therapy options have also resulted in fewer "no-shows" and cancellations.8
Another potential benefit is that at-home health monitoring measures can be completed electronically to help inform the therapist about the patient's progress and treatment expectations, and can allow more frequent observation.8 For example, patients can complete health questionnaires (such as the Patient Health Questionnaire-9) electronically before a therapy session to allow the clinician to better understand the patient's symptoms and goals before the session begins.8
One concern regarding online therapy is its effectiveness vs in-person treatment. Overall, the evidence supports the efficacy of virtual mental health care. In a review of 70 studies of telemental health published from 2003 to 2013, Hilty et al found that virtual treatment was as effective as in-person care for multiple patient populations with barriers to mental health treatment.9
In a study of 125 adults with various eating disorders, Stieger et al reported that compared with in-person treatment, virtual treatment resulted in similar improvements in eating symptoms, weight gain (when indicated), and satisfaction with treatment.10 Alavi et al found that compared with in-person cognitive behavioral therapy (CBT), 12 weeks of online, therapist-supported CBT yielded comparable significant improvements in depressive symptoms and quality of life in 108 adults diagnosed with major depressive disorder.11
A 2022 systematic review of 12 randomized controlled trials that included 931 patients with mental health conditions (including addiction disorders, eating disorders, and childhood mental health problems) found no significant difference between virtual vs in-person psychotherapy in measures of overall improvement, function, and patient satisfaction.12 Some evidence suggestsonline therapy can be effective for patients with a wide variety psychiatric disorders, including attention-deficit/hyperactivity disorder, posttraumatic stress disorder, depression, and anxiety.1
The use of virtual mental health services has been associated with fewer psychiatric hospitalizations, fewer days spent in the hospital (on average), improved adherence to treatment, and improved treatment outcomes.8 Multiple patient populations have reported being highly satisfied with online mental health services.8,4
Drawbacks of Virtual Mental Health Care
Before the COVID-19 pandemic, multiple factors limited the widespread implementation of online therapy, including insufficient clinician knowledge of and experience with providing virtual therapy, concerns for patient safety, limited reimbursement from insurance companies, and privacy/legal concerns.8 Clinicians, researchers, and policymakers devised effective solutions to most of these problems during the pandemic. However, some patient barriers to receiving online therapy have persisted, including limited internet access, difficulties in arranging a private space to participate in virtual therapy, and difficulties using technology due to age or disability (visual, hearing, attention deficits).8
In a study that conducted semi-structured interviews with 17 mental health professionals, some participants cited limited nonverbal communication and limited ability to use certain therapeutic tools, such as music or painting, as potential drawbacks of virtual therapy.2 Patients may have concerns for privacy, trust, and security regarding online therapy.8,13
With the increased use of telehealth, informed consent often takes place online, which raises privacy concerns in verifying a patient's identity. Patients may participate in a virtual therapy while in a less secure/confidential location, and the session might be subject to frequent interruptions.8,13 Technical issues are also a potential barrier; approximately 30% of US adults have occasional or frequent problems connecting to the internet, and others have financial constraints to home internet or computer use.8
Online therapy is an emerging treatment modality, and as such, universally recognized standards for training for therapists do not yet exist.5 Due to the lack of standardized formal training, a therapist who works virtually might not be adequately prepared to provide a standard of care equal to that of in-person therapy.8 While online therapy may be equally effective as in-person therapy for many patients, certain patient populations — such as a patient who is actively suicidal, homicidal, or experiencing psychotic symptoms, or a victim of abuse who have the potential for the abuser to be present during therapy — may require in-person sessions.8
Summary
The growing use of online therapy has greatly increased the availability of mental services, and offers potential benefits for patients as well as therapists, with some drawbacks and scenarios in which care should take place in person. The decision to provide psychotherapy virtually vs in-person generally can be made based on the patient's preference.8 Clinicians must ensure their competence with providing online care, set appropriate boundaries, understand the confidentiality risks that come with online therapy, consider the possible distractions, and understand the laws and regulations for telehealth in varying jurisdictions.8 Resources from the American Psychiatric Association, American Psychological Association, and American Telemedicine Association outline best practices and guidelines for delivering virtual mental health services.5-7
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Based on the latest data by the Centers for Disease Control and Prevention (CDC), approximately 1 in 36 (~2.7%) children in the United States are diagnosed with autism spectrum disorder (ASD).1 Over the last few years, the increase in clinical ASD diagnoses has led some researchers to attribute this rise to mis- and overdiagnoses of the condition,2 and also, to the growing awareness among the general population and scientific community.3
We reached out to clinicians involved in the diagnosis and care of patients with ASD to get further insights on screening for and diagnosing autism in the US and the collaborative efforts that may result in more favorable patient outcomes.
The discussion panel included the following clinicians:
Pediatric neurologist Ann Neumeyer, MD, medical director of the Massachusetts General Hospital’s Lurie Center for Autism in Lexington and associate professor of neurology at Harvard Medical School in Boston.
Nora D. Friedman, MD, child, adolescent, and adult psychiatrist at Lurie Center for Autism and instructor at Harvard Medical School.
Clinical neuropsychologist Susanne W. Duvall, PhD, ABPP, associate professor of pediatrics and psychiatry, division of psychology, and associate director of clinical training, Clinical Psychology PhD Program, Institute on Development and Disability at Oregon Health & Science University (OHSU).
Ann Neumeyer, MD
Nora D. Friedman, MD
Susanne W. Duvall, PhD, ABPP
In 2013, the American Psychiatric Association (APA) developed standardized criteria —according to the Diagnostic and Statistical Manual, Fifth Edition (DSM-5) — to diagnose ASD by combining 4 conditions: autism, Asperger syndrome, childhood disintegrative disorder, and pervasive development disorder not otherwise specified (PDD-NOS).4
Are Diagnostic Criteria for ASD Misleading?
However, in a review, neuropsychologist David Rowland wrote that autism is more of a brain anomaly than a developmental disorder and that the National Institutes of Health (NIH)’s list of signs and symptoms may be too vague to confirm autism.5
Following the revision of the criteria that introduced the concept of a “spectrum,” the diagnosis of autism appears to be based on behaviors shared with other diagnoses of uncertain similarities.3,6 The broad definition of autism and overlapping symptoms with complex conditions have created challenging situations in practice, with false diagnoses — both false positives and negatives — affecting autism assessment.5,7
Based on these scenarios, we asked Drs Neumeyer and Friedman about diagnosing autism in clinical practice.
Q: What are some of the typical and atypical signs of autism that you have come across? What are your clinical pearls in identifying these signs and symptoms? How quickly must they be addressed?
Dr Neumeyer: The young children with language delay are often diagnosed early and the children who don’t have language delay often have delayed diagnosis or misdiagnosis. When I think about diagnosing autism, I think about the DSM-5 criteriafor autism4 that the child has to have: social communication delays, delays in social and emotional reciprocity, nonverbal communication, and maintaining relationships. Many children with autism who are considered “intelligent” have impaired relationships; however, unless you ask parents, they don’t tell you that.
With regard to health outcomes, one of the other things that is really important is that autism in many individuals is associated with sensory function, and patients become really picky about the foods that they eat, which can lead to nutritional deficiencies. Some patients with these nutritional deficiencies have poor bone growth and density, which can lead to osteoporosis.
Dr Friedman: ASD can be defined as deficits in social communication and interaction, as well as restricted and repetitive behaviors. We want to understand how these issues manifest across settings. As part of the diagnostic work-up, it is important to assess for co-occurring conditions, such as anxiety or attention-deficit/hyperactivity disorder (ADHD). We try to think holistically about the individual with ASD, talking with families about therapeutic and behavioral interventions, school and employment supports, and medication management if indicated. In addition, we aim to connect patients with services as quickly as we can.
Diagnosing Autism in Adulthood
Age at ASD diagnosis is directly related to achieving optimal outcomes, which may be improvements in cognition and language or adaptive behavior, as well as reduced costs for families, society, and the health care system as a whole.8 In recent years, studies have shown an increase in autism assessments among adults, including diagnoses in both adulthood and after the childhood-to-adulthood transition.9
In a 2023 study published in the International Journal of Mental Health Systems,8 the lived experience of patients with an ASD diagnosis in adulthood was noted. Some of the common themes in their ASD diagnostic journeys were observing differences and similarities between themselves and patients with ASD; barriers in diagnosis, such as cost of care and wait times; and emotional health.
Drs Neumeyer and Duvall presented fairly similar views on why autism diagnoses happen later in life, and the outcomes associated with them.
Q: Data from studies have indicated an increase in autism being diagnosed in adulthood, which can lead to poor health outcomes.8 Can you explain the reasons for these diagnostic delays, and how providers can address this?
Dr Neumeyer: Adults who are being diagnosed with autism are typically considered “intelligent” and who have been able to mask their symptoms or that their condition was misdiagnosed, for example, with anxiety, ADHD, or learning disabilities. There is a smaller group of older adults who are not diagnosed early because when they were younger, autism was just defined as very severe repetitive behaviors and lack of language skills.
Dr Duvall: The most common scenario is that individuals with more nuanced symptoms of autism can be missed in childhood and then go on to receive a diagnosis in adulthood, but in retrospect, the same behavior patterns or social communication [delays] were always present. Autism has a genetic component, thus sometimes, when we provide an ASD diagnosis to a child, the parent notes that they were “just like them” when they were a child and may go on to seek evaluation for an ASD diagnosis themselves.
Gaps and Barriers in Autism Evaluation
To identify barriers in receiving autism diagnosis, researchers at Stanford University, California, conducted a study that revealed sparse and uneven distribution of diagnostic resources in the US, which resulted in increased waitlists and travel distance. Specifically, patients from rural communities were less likely to be diagnosed than those from urban communities who lived closer to diagnostic centers, indicating a gap in access to care.10
In addition to this, the important role of pediatric primary care providers — the first point of care during early childhood — in helping access autism services has also been noted in a 2022 study published in Autism Research.11
Dr Neumeyer spoke further about the existence of barriers in the diagnosis of ASD.
Q: In the US, several clinical specialties are facing a shortage of pediatricians due to certain factors — increasing demand, lesser students opting for pediatrics as their specialty, and poor financial incentives — resulting in gaps in access to autism resources.10 Can you describe some of the most common barriers in achieving a timely and accurate autism diagnosis?
Dr Neumeyer: The number of individuals opting for the subspecialty of developmental behavioral pediatrics is very low, with many fellowships not being able to fill their slots.One of the results of that isthat it is the specialty that diagnoses and cares for children with neurodevelopmental disabilitiesand autism. So, we are in desperate need of more developmental behavioral pediatricians.
Every state in the US has different rules according to which it is decided who diagnoses autism; in Massachusetts, any MD or psychologist can make a diagnosis. One of the barriers in Massachusetts is that most pediatricians don’t feel comfortable or have the training to make a diagnosis. The way their practices are run, it is very difficult to make an autism diagnosis because they see patients quickly, and diagnoses require more time spent with patients. So, typically, psychologists, pediatric neurologists, and psychiatrists make a diagnosis in Massachusetts.
The other, more research-based, challenge is the lack of a biomarker for autism, so we can’t diagnose just with a test. There are some online companies that have been good at getting a validated diagnosis for autism, but those are new.
What’s Needed for Autism Diagnosis? Role of Collaboration Between Specialists
Experts agree that a multidisciplinary team of health care professionals and awareness of “red flags” by parents, families, and teachers can be an optimal diagnostic approach.8
Q: What is the role of each neurologist, psychiatrist, and psychologist in diagnosing autism? In addition, what collaborative efforts must be taken by the specialties to screen for and diagnose autism, and how should providers go about referrals for autism?
Dr Neumeyer: Generally, here, we start with a psychologist for evaluation of autism and the neurologist and psychiatrist work hand-in-hand, especially when there are atypical features or physical findings. It is very important to bring in the neurologist to make sure there’s no genetic involvement or other syndrome causing or associated with the autism. The psychiatrist can be very important when there are behavioral difficulties. The reality is that there are not enough child psychiatrists in the US, and so, many pediatric neurologists and pediatricians also treat the behavioral aspect of children with autism.
Dr Friedman:Ideally, patients undergo a multipronged evaluation. This can include [evaluation of] history, a clinical interview, observation, physical exam and work-up, and cognitive and/or developmental testing. Understanding a patient’s unique profile informs treatment planning. The available resources in a given area will, in part, dictate the specific clinicians whom a family sees, the subsequent referrals that are made, and access to services. Collaboration among team members is essential for optimal care for patients and their families.
Dr Duvall: In our interdisciplinary ASD-specific assessment clinic, 100% of the individuals coming in report that social difficulties are, at least, part of why they presented with this diagnostic question. However, only about 30% to 50% of the older children and teens who present for a comprehensive ASD assessment receive an ASD diagnosis, while rates in children younger than age 4 may be closer to 60% to 80%.
There is high variability across primary care providers and pediatricians around expertise in neurodevelopmental disorders. If caregivers are concerned, they should talk with their primary care provider to complete in office screening, such as questionnaires or behavioral observation, and then ask for a referral to a specialist for evaluation, as early interventions are often the most effective in supporting skill development.
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Autism spectrum disorder (ASD) is a complex developmental disorder involving persistent deficits in social communication and interaction in addition to restricted, repetitive behaviors, interests, and activities.1,2 The American Psychiatric’s Association’s Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, Text Revision (DSM-5-TR) provides the criteria for ASD diagnosis based on specific symptom profiles.1 As part of these criteria, the DSM-5-TR outlines specifiers of symptom severity, which it categorizes as “levels.”1 This article describes the criteria and various levels of symptom severity used in the diagnosis of ASD.
Changes to the Autism Diagnosis
Autism was first identified as a distinct diagnosis in DSM-III, which was published in 1980.3 In DSM-IV-TR, a patient with symptoms of autism would likely be diagnosed with 1 of 4 disorders under the category of pervasive developmental disorder (PDD): autistic disorder, Asperger’s disorder, childhood disintegrative disorder, or PDD not otherwise specified.4 However, because researchers determined that these 4 diagnoses were not consistently applied by different clinicians, PDD was replaced with autism spectrum disorder (ASD) in DSM-5.4 A patient who met the criteria for 1 of the 4 PDD diagnosis in DSM-IV-TR will likely meet the criteria for ASD in DSM-5.4
DSM-5-TR Criteria for Autism Spectrum Disorder
The DSM-5-TR criteria for ASD are summarized as follows1:
A. Persistent deficits in social communication and social interaction as manifested by all of the following:
Deficiencies in social-emotional reciprocity (examples: inability to engage in normal back-and-forth conversation, reduced sharing of interests/emotions/affect, failure to initiate or respond to social interactions);
Deficiencies in nonverbal gestures used in social interaction (examples: problems with eye contact, body language, or understanding/using gestures, lack of facial expressions and nonverbal communication); and
Deficiencies in developing, maintaining, and understanding relationships (examples: lack of interest in peers, difficulty making friends).
B. Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least 2 of the following:
Repetitive motor movements, use of objects, or speech (examples: body rocking, arm or hand flapping, lining up toys, repeating words just spoken by another person);
Insistence on sameness, inflexible adherence to routine, or ritualized patterns of behavior (examples: difficulty with transitions, rigid thinking patterns, needing to eat the same food each day);
Highly restricted, fixated interests that are abnormal in intensity or focus (examples: a strong attachment to peculiar objects); and
Hypersensitivity or hyporeactivity to sensory input or abnormal interest in sensory aspects of the environment (examples: indifference to pain or temperature, adverse response to specific sounds or textures).
C. Symptoms must be present in the early developmental period.
D. Symptoms significantly impair social, occupational, or other important functional areas.
E. Deficits are not better explained by intellectual disability or global developmental delay.
Specifiers for the ASD diagnosis include the following1:
With or without accompanying intellectual impairment;
With or without accompanying language impairment;
Associated with a known medical or genetic condition or environmental factor;
Associated with another neurodevelopmental, mental, or behavioral disorder;
With catatonia, and
The current severity specifiers.
The 3 Levels of Autism Spectrum Disorder
The current severity specifiers consist of 3 levels, ranging from least severe (Level 1) to most severe (Level 3). The severity of each of the 2 main criterion — social communication and restricted, repetitive behaviors — should be rated separately.1
Level 1: Requires Support
Individuals with ASD categorized as Level 1 have the least severe symptoms and require the lowest level of support.
Social communication:Patients classified as Level 1 will have noticeable impairments unless supports are in place. They generally have difficulty initiating social interactions and will give atypical responses to others' social overtures. Patients classified as Level 1 may have a reduced interest in social interactions. For example, a person specified as Level 1 might be able to speak full sentences and communicate, but would not be able to have a mutual, back-and-forth conversation. Additionally, their efforts to make friends often fail.1
Restricted, repetitive behaviors: These individuals' rigid behavior limits their ability to function in 1 or more contexts. They tend to have challenges alternating between activities, and their independence is hindered by issues with organization and planning.1
Level 2: “Requires Substantial Support”
Patients with ASD classified as Level 2 have more severe symptoms that cause greater impairment and require substantial support.1
Social communication:Patients specified as Level 2 have marked deficits in verbal and nonverbal social communication skills. Even with support, their social impairments are apparent. They generally have limited ability to initiate social interactions, and will provide decreased or aberrant responses to others' social overtures. For example, a patient classified as Level 2 might be able to speak basic sentences, but their interactions with others would be limited to narrow special interests, and their nonverbal communication would be odd.1
Restricted, repetitive behaviors: Individuals with ASD Level 2 have inflexible behavior, problems adjusting to change, or similar behaviors that are frequent enough to be obvious and interfere with functioning in various contexts. They also have distress and/or difficulty changing focus or action.1
Level 3: “Requires Very Substantial Support”
Patients with ASD specified as Level 3 have the most severe symptoms and require very substantial support.1
Social communication:Individuals classified as Level 3 have extreme deficits in verbal and nonverbal social communication that cause severe impairments in functioning. Their ability to initiate social interactions is very limited, and they will provide minimal response to others' social overtures. They tend to only respond to very direct social approaches. For example, a patient specified as Level 3 would have very few words of intelligible speech and would rarely initiate interactions with others.1
Restricted, repetitive behaviors: Patients with Level 3 exhibit inflexible behaviors, problems adjust to change, or similar behaviors that interfere with every aspect of their lives. They experience tremendous distress and difficulty changing focus or action.1
How the Levels Are Used
Using the levels to clarify the severity of ASD symptoms gives clinicians and caregivers information they can use to tailor services and support specific to an individual patient's needs. However, it is important to recognize that these levels are only used to describe the patient's current symptomatology.1Symptoms of ASD might fluctuate over time; can vary greatly based on the patient's developmental level, age, environment, and other characteristics; and might fall below Level 1.1
Whilehelpful, the levels should not be used to determine a patient's eligibility for specific services or treatments; that requires an individualized assessment that takes into account the patient's personal priorities and goals.1
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