Contact Hours: 5
This educational activity is credited for 5 contact hours at completion of the activity.
Course Purpose
The purpose of this course is to provide healthcare professionals with a brief overview of the various aspects of autism, including its definition and diagnostic criteria, medical assessments, treatment interventions, and support systems available for individuals and families affected by the disorder.
Overview
Autism spectrum disorder (ASD) is characterized by a complex interplay of neurological and behavioral differences, resulting in a broad spectrum of symptoms and challenges. This course explores the various aspects of autism, including its definition and diagnostic criteria, medical assessments, treatment interventions, and support systems available for individuals and families affected by the disorder. This course will also highlight the conditions that can mimic or be mistaken for autism, explain the importance of personalized care and support, and discuss nursing considerations when caring for patients with autism, emphasizing the importance of holistic and person-centered care in addressing the diverse needs of individuals on the autism spectrum.
Course Objectives
Upon completion of this course, the learner will be able to:
- Define autism as a multifaceted developmental condition with possible risks associated with certain genetic conditions.
- Identify neurological deficits and restricted, repetitive behaviors associated with autism spectrum disorder (ASD) according to the American Psychiatric Association’s Diagnostic and Statistical Manual, Fifth Edition (DSM-5).
- Understand how comprehensive exploration of various factors, such as communication patterns, social interactions, and engagement with activities can be used to diagnose autism and establish appropriate interventions.
- Review the three levels of autism, and the distinct behavioral characteristics of each.
- Identify national support groups that help parents and caregivers of individuals diagnosed with autism.
Policy Statement
This activity has been planned and implemented in accordance with the policies of FastCEForLess.com.
Disclosures
Fast CE For Less, Inc and its authors have no disclosures. There is no commercial support.
To access Autism: Understanding the Spectrum, purchase this course or a Full Access Pass.
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To access Autism: Understanding the Spectrum, purchase this course or a Full Access Pass.
If you already have an account, please sign in here.
| 22q11.2 Deletion Syndrome | A condition caused when a small part of chromosome 22 is missing, which causes several body systems to develop poorly. |
| American Psychiatric Association’s Diagnostic And Statistical Manual, Fifth Edition (DSM-5) | A classification of mental disorders with associated criteria designed to facilitate more reliable diagnoses of these disorders. |
| Antipsychotics | A class of psychotropic medication primarily used to manage psychosis (including delusions, hallucinations, paranoia or disordered thought), principally in schizophrenia but also in a range of other psychotic disorders |
| Applied Behavior Analysis (ABA) | An evidence-based best practice treatment by the US Surgeon General and by the American Psychological Association. |
| Asperger’s Syndrome | A neurodevelopment disability that affects the ability to effectively interact and communicate with people. |
| Attention Deficit–Hyperactivity Disorder (ADHD) | A mental health condition that can cause unusual levels of hyperactivity and impulsive behaviors. |
| Augmentative And Alternative Communication (AAC) Systems | An area of clinical practice that supplements or compensates for impairments in speech-language production and/or comprehension, including spoken and written modes of communication. |
| Autism | Developmental disability caused by differences in the brain that affect social communication and interaction, and behavior, learning, and movement. |
| Avoidant Personality Disorder | Pervasive pattern of behavior characterized by feelings of extreme social inhibition, and feelings of inadequacy and inferiority. |
| Centers For Disease Control And Prevention (CDC) | The nation’s leading science-based, data-driven, service organization that protects the public’s health. |
| Childhood Disintegrative Disorder (CDD) | A condition characterized by the loss of previously acquired language, motor, and social skills, or a late onset of developmental delay. |
| Down Syndrome | A genetic disorder caused by the presence of all or part of a third copy of chromosome 21. |
| Fine Motor Skills | The ability to make movements using the small muscles in the hands and wrists. |
| Gestational Diabetes | Occurs when your body cannot make enough insulin during your pregnancy. |
| Gross Motor Skills | Involve movements of the large muscles of the arms, legs, and torso. |
| Hyperlexia | When a child can read at levels far beyond those expected for their age. |
| Intellectual Disability | A learning disability characterized by below average intelligence. |
| Lead Poisoning | Gradual build-up of lead in the body over a prolonged period results in poisoning. |
| Measles, Mumps, And Rubella (MMR) | Combination vaccine that helps protect against these three serious viral infections. |
| Melatonin | A hormone made in the body that regulates night and day cycles or sleep-wake cycles. |
| Neonatal | Newborn, or the first 28 days of life. |
| Neuroleptics | Also called antipsychotics, are medications that block dopamine, and sometimes, serotonin receptors in the brain to reduce symptoms of psychosis, particularly in cases of schizophrenia. |
| Obsessive-Compulsive Disorder (OCD) | A mental health disorder characterized by repetitive actions that seem impossible to stop. |
| Occupational Therapy | A healthcare profession that focuses on helping people do all the things that they want and need to do in their daily lives. |
| Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) | One of several previously separate subtypes of autism that were folded into the single diagnosis of autism spectrum disorder (ASD). |
| Pervasive Developmental Disorders (PDD) | Now known as autism spectrum disorder (ASD), are characterized by delays in the development of social and communication skills. |
| Reactive Attachment Disorder | A rare condition of emotional dysfunction in which a baby or child has difficulty forming a bond with parents or caregivers. |
| Respite Care | Short-term relief for primary caregivers who need time to rest, travel, or spend time with other family and friends. |
| Rett Syndrome | A rare neurological genetic disorder that causes severe muscle movement disability. |
| Rubella Infection | A contagious viral infection best known for its distinctive red rash. |
| Schizophrenia | A serious mental illness that affects how a person thinks, feels, and behaves. |
| Sclerosis Fragile X Syndrome | A genetic condition inherited from parents which results in various developmental problems like intellectual disabilities and cognitive impairment. |
| Seizures | Sudden, uncontrolled electrical disturbance in the brain which can cause changes in behavior, movements, feelings, and consciousness. |
| Selective Serotonin Reuptake Inhibitors (SSRIs) | A type of antidepressant that increase serotonin levels in the brain and treat depression, anxiety and other conditions. |
| Self-Regulation | The ability to control your own behavior and emotions, and to resist temptations and impulses. |
| Sensory Integration Therapy | Also referred to as Ayres Sensory Integration (ASI), is a therapeutic approach that is used to improve symptoms of sensory integration dysfunction. |
| Social (Pragmatic) Communication Disorder | A neurodevelopmental condition that affects how children use language in social situations. |
| Speech Therapy | A treatment and support for people with speech disorders and communication problems |
| Tardive Dyskinesia | A side effect of antipsychotic medications that causes stiff, jerky movements of your face and body. |
| Thalidomide | A sedative drug discovered in the 50s, which was found to be linked to severe congenital malformations of the fetus. |
| Valproic Acid | Medication is used to treat seizure disorders, mental/mood conditions (such as manic phase of bipolar disorder), and to prevent migraine headaches. |
| Wandering | Traveling aimlessly from place to place. |
Autism spectrum disorder (ASD) encompasses a diverse array of conditions affecting the development of the brain. It is characterized by a complex interplay of neurological and behavioral differences, resulting in a broad spectrum of symptoms and challenges. Autism is widely recognized as a lifelong disorder where the degree of impairment in functioning varies significantly among individuals. While some autistic individuals can lead independent lives, others experience more severe disabilities that necessitate lifelong care and support. In certain cases, autism may be evident from early childhood, although diagnosis often occurs later in life. For many, symptoms may not fully manifest until social demands exceed the individual’s capacity to cope, ultimately making diagnosis and intervention more challenging. According to the Centers for Disease Control and Prevention (CDC), the prevalence of autism is significant, with an estimated one in 36 children identified as being autistic, making it a public health concern. This underscores the importance of early detection, intervention, and ongoing support services to optimize outcomes and heighten the quality of life for individuals affected by autism spectrum disorder. 1-4
This course explores various aspects of autism, including its definition and diagnostic criteria, medical assessments, treatment interventions, and support systems available for individuals and families affected by the disorder. This course will also highlight the conditions that can mimic or be mistaken for autism, explain the importance of personalized care and support, and discuss nursing considerations when caring for patients with autism, emphasizing the importance of holistic and person-centered care in addressing the diverse needs of individuals on the autism spectrum.
Autism represents a multifaceted developmental condition characterized by enduring difficulties in social communication, along with restricted interests and repetitive behaviors. Coined by Swiss psychiatrist Eugen Bleuler in 1908, autism was first used to describe a broad spectrum of cognitive, emotional, and social deficiencies. As research and diagnostic tools have improved over the decades, so has the medical field’s perception of autism as a spectrum of conditions that vary from individual to individual. While there is no known single cause for ASD, available scientific evidence suggests that a combination of genetic and environmental factors increase the likelihood of autism development.1,2
Individuals with certain genetic conditions, such as Tuberous and Sclerosis Fragile X Syndrome are at increased risk of being diagnosed with autism. These genetic conditions, along with hundreds of individually rare genetic causes for autism, collectively explain over 30% of cases. For this reason, genetic testing is often recommended after diagnosis to identify specific genetic variations associated with the condition. Prenatal exposure to factors such as rubella infection, valproic acid, or thalidomide has been linked with a higher risk of autism. Maternal gestational diabetes and bleeding, as well as neonatal complications, including low birth weight and preterm birth, are also associated with increased autism risk. Some studies suggest that older parents at the time of pregnancy may increase the risk of autism. For children with an autistic older sibling, the likelihood of being diagnosed with autism increases by 15% – 20%. This suggests a possible genetic predisposition within families. Gender disparities also play a role, as male children are diagnosed with autism more frequently than those assigned female at birth. It is important to note that extensive research has refuted any link between childhood vaccines and autism development. In fact, there is no credible scientific evidence linking childhood vaccines, including the measles, mumps, and rubella (MMR) vaccine, to autism.1,2,5
DSM-5 Definition of Autism
The American Psychiatric Association’s Diagnostic and Statistical Manual, Fifth Edition (DSM-5), serves as a foundational resource for clinicians in diagnosing autism spectrum disorder (ASD), offering standardized criteria to guide assessment and classification. In accordance with the DSM-5 guidelines, the diagnosis of autism requires the presence of persistent deficits across three core domains of social communication and interaction:6
- Deficits in social-emotional reciprocity, which manifest in various forms, including abnormal social approaches, challenges in engaging in reciprocal conversations, reduced sharing of interests, emotions, or affect, and difficulty initiating or responding to social interactions.
- Deficits in nonverbal communicative behaviors utilized for social interaction. These deficits may range from difficulties integrating verbal or nonverbal communication methods, irregularities in eye contact and body language, to challenges in understanding and employing gestures. In severe cases, individuals may exhibit a complete absence of facial expressions and nonverbal communication cues.
- Deficits in developing, upholding, and understanding relationships encompassing a spectrum of challenges. These may include difficulties adapting behavior to suit different social contexts, struggles with participating in imaginative play or forming friendships, and a lack of interest in engaging with peers.
Additionally, to fulfill the diagnostic criteria outlined in the DSM-5, individuals must exhibit at least two of four types of restricted, repetitive behaviors:6
- Stereotyped, fixed, or repetitive motor movements, use of objects, or speech. Examples include simple motor stereotypes, lining up toys or objects, echolalia (repetition of phrases), and using idiosyncratic phrases or language patterns.
- Inflexible adherence to routines, insistence on sameness, or ritualized verbal or nonverbal behavior patterns. This resistance to change is often coupled with experiencing extreme distress in response to minor alterations in the environment or daily activities. Examples include adherence to specific greeting rituals, insistence on following the same routes, or consuming the same foods daily.
- Fixated, highly restricted interests that are abnormal in intensity or focus, such as an intense preoccupation or attachment to particular objects, topics, or activities. These interests may be excessively narrow in nature, consuming a significant portion of the individual’s time and attention.
- Hypo- or hyperreactivity to certain sensory inputs or excessive interest in sensory aspects of the environment. Examples of such behavior include apparent indifference to pain or temperature, adverse reactions to specific sounds or textures, excessive engagement in smelling or touching objects, and a fascination with visual stimuli such as lights or movements.
In terms of medical assessment, diagnosing autism does not rely on conventional medical tests such as blood work or brain scans. Rather, an accurate diagnosis hinges upon careful observation of the individual’s communication patterns, social interactions, and engagement with activities and interests. Healthcare professionals engage in a comprehensive exploration of various factors to establish an accurate diagnosis and develop tailored interventions. This involves delving into the mother’s pregnancy history to identify any potential prenatal influences on the development of autism. Additionally, clinicians meticulously track developmental milestones from infancy to the present, paying close attention to any deviations or delays that may indicate autism. Sensory challenges, which can significantly impact an individual’s daily functioning, are carefully identified and assessed within the context of the assessment. Past medical conditions such as ear infections and seizures are evaluated to understand their potential implications for autism diagnosis and management.1,2
Family history is also scrutinized for any patterns of developmental disorders, genetic predispositions, or metabolic abnormalities that may contribute to the individual’s presentation. Cognitive functioning is rigorously evaluated through standardized tests and observational methods, providing insights into the individual’s intellectual abilities and processing strengths. Language skills, encompassing both receptive and expressive abilities, are assessed to discern any language-related challenges characteristic of autism. Autism-specific observational tests, interviews, or rating scales are employed to capture the characteristic behaviors and traits associated with autism, facilitating a comprehensive understanding of the individual’s symptomatology and support needs. Through this comprehensive approach to assessment, healthcare professionals can effectively guide diagnosis, intervention, and support strategies tailored to autistic individuals.1,2
Autism diagnosis and classification underwent significant changes with the introduction of the DSM-5 in 2013, which redefined the diagnostic criteria and terminology for autism spectrum disorders (ASD). Prior to 2013, autism was part of the pervasive developmental disorders (PDD) category, encompassing several diagnoses. However, with the DSM-5, four previous PDD diagnoses, including pervasive developmental disorder not otherwise specified (PDD-NOS), Asperger’s syndrome, autistic disorder, and childhood disintegrative disorder (CDD), were consolidated under the umbrella term of autism spectrum disorder (ASD). This reclassification aimed to streamline diagnostic criteria and provide a more comprehensive understanding of autism’s diverse presentations and characteristics. A fifth diagnosis formerly included in the PDD category, Rett syndrome, is now recognized as a distinct disorder caused by a genetic mutation and is no longer considered a type of autism. Autism is now characterized by varying degrees of severity, with the level of support needed for individuals determined by the associated symptomatic behaviors. The DSM-5 introduced a three-level severity classification system: 6,7
Level 1 – Requires support
Level 2 – Requires substantial support
Level 3 – Requires very substantial support
This classification framework helps clinicians and caregivers better understand an autistic individual’s needs and tailor interventions accordingly, promoting more targeted and effective management strategies for individuals across the autism spectrum. 6,7
Level 1 Autism
Level 1 autism, formerly recognized as Asperger’s Syndrome, is a milder form of autism. It is characterized by distinctive behavioral patterns and challenges in social communication and interaction. Individuals diagnosed with Level 1 autism may also include those previously categorized under Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS), who exhibit some autism-like characteristics but may not meet the full criteria for autism spectrum disorder or Asperger syndrome. One hallmark feature of Level 1 autism is the presence of high intelligence and the ability to manage daily life activities, often allowing individuals to maintain employment. They may exhibit extreme interest in specific topics and engage in extensive discussions about these subjects. Despite retaining the ability to develop spoken language, individuals with Level 1 autism may struggle with effective communication skills, experiencing challenges in understanding and complying with social conventions. Emotional and sensory dysregulation may be observed, along with difficulties in understanding social cues and maintaining eye contact during interactions. Individuals at this level of autism spectrum disorder often prefer solitary activities and may exhibit rigid or inflexible behaviors. They may experience stress during transitions and display behavioral problems in response to changes or unexpected situations. 6,7
Level 2 Autism
Level 2 autism, encompassing autistic disorder, represents a more significant level of severity along the autism spectrum compared to Level 1 autism (formerly Asperger’s Syndrome and PDD-NOS). Individuals diagnosed with Level 2 autism exhibit distinct characteristics and challenges in social communication and interaction, as well as in behavioral flexibility. One prominent feature of Level 2 autism is the use of fewer words or noticeably different speech patterns, which may hinder effective communication with others. Individuals may struggle to interpret nonverbal communication cues, such as facial expressions, leading to difficulties understanding social contexts and engaging in reciprocal interactions. Atypical social behavior is also common among individuals with Level 2 autism and includes not responding to conversation cues or withdrawing during interactions. Individuals at this level of autism spectrum disorder often demonstrate a high level of interest in specific topics, displaying focused attention and engagement in these areas. However, they may experience noticeable distress when confronted with changes in routine or unexpected situations, highlighting challenges in adapting to new environments or circumstances. 6,7
Level 3 Autism
Level 3 autism represents the most severe and profound end of the autism spectrum, characterized by significant challenges in social interaction, communication, and adaptive functioning. Individuals diagnosed with Level 3 autism experience marked impairments across various domains of development, necessitating extensive support and intervention to address their complex needs. One distinguishing feature of Level 3 autism is the presence of severe limitations in social interaction and communication skills. Individuals may exhibit limited speech or maybe nonspeaking, relying on echolalia (repeating words or phrases they hear) as a form of communication. They may demonstrate behaviors that appear younger than their actual age and may prefer solitary activities, showing little interest in social engagement with others. Individuals with Level 3 autism may have difficulty responding to their names and may interact with others only to meet immediate needs, lacking the ability to engage in reciprocal social interactions or share imaginative play with peers. Limited interest in friendships and challenges in understanding social cues further contribute to their social difficulties. Repetitive behaviors such as rocking, spinning, disrupted sleeping or eating patterns, and a predisposition to tantrums or meltdowns are common among individuals with Level 3 autism. They may experience extreme stress when asked to switch tasks or transition between activities, leading to significant behavioral challenges and emotional dysregulation. Along with the core symptoms of autism, individuals with Level 3 autism may exhibit more substantial behavior problems, including frequently running away from home, attacking other people, or engaging in self-injurious behaviors. The level of impairment is profound, requiring extensive assistance and support in daily living activities due to their inability to communicate their needs effectively. Childhood disintegrative disorder, a rare and severe form of autism, is encompassed within Level 3 autism. This condition is characterized by a rapid regression of social, language, and mental skills in children who previously developed normally, occurring between the ages of 2 and 4. Children with childhood disintegrative disorder may also develop a seizure disorder, further complicating their clinical presentation and treatment needs. Recognizing the profound challenges associated with Level 3 autism is crucial for implementing comprehensive intervention strategies and providing appropriate support to enhance individuals’ quality of life and functional outcomes. 6,7,8
Conditions often accompany autism, contributing to the complexity of its presentation and management. While the proportion of individuals identified with autism and concurrent intellectual disability has decreased over time, suggesting improved recognition of autism among individuals with higher intellectual abilities, a significant portion of individuals with autism still experience concurrent intellectual disability. Recent data from the CDC revealed that nearly 33% of autistic eight-year-old children exhibited an IQ within the range of intellectual disability, defined as 70 or below. In addition to intellectual disability, autistic individuals may exhibit risky behaviors such as self-injury and wandering. Reports indicate that up to 68% of autistic individuals engage in aggressive or self-injurious behaviors. Wandering, a behavior with potentially dangerous consequences, has been documented in 37.7% of children with both autism and intellectual disability and 32.7% of children with autism without intellectual disability. These behaviors not only pose safety risks but also generate significant stress for autistic individuals and their families. Other conditions that commonly occur with autism include motor abnormalities (up to 79%), attention deficit–hyperactivity disorder (28 – 44%), gastrointestinal problems (9 – 70%), sleep problems (50 – 80%), and anxiety (42 – 56%).1,4
Conditions That Can Be Mistaken for Autism
Several conditions share characteristics with autism, leading to confusion and potential misdiagnosis during clinical assessments. For accurate diagnosis and appropriate intervention, healthcare providers must understand and recognize the differing conditions.
Consider children with developmental delays. While they may exhibit challenges in language, speech, hearing, fine motor skills, social interaction, and cognitive abilities, that does not directly indicate autism. Such delays can stem from various causes, such as lead poisoning, Down syndrome, or other unidentified factors. Some genetic disorders, such as 22q11.2 deletion syndrome, can mimic autism symptoms without the presence of the disorder. Conversely, children who demonstrate early reading abilities or exhibit signs of high intelligence may receive a misdiagnosis of autism, especially if they also have challenges in communication. Hyperlexia, characterized by early reading skills, may co-occur with autism but does not always indicate the presence of the disorder. Some individuals may also experience heightened sensitivity to sensory stimuli like light, sound, or touch. While sensory issues can be present in autistic individuals, they may also occur in others without the disorder. Speech delays and other autism-specific symptoms help distinguish autism from sensory processing issues alone. Several psychological disorders, including avoidant personality disorder, obsessive-compulsive disorder (OCD), reactive attachment disorder, social (pragmatic) communication disorder, and schizophrenia, may manifest symptoms resembling those of autism. However, careful evaluation is necessary to differentiate between these conditions and autism.2,9
Currently, autism is not curable, but various treatments and interventions can help alleviate symptoms and enhance overall functioning for better engagement in society. Treatment approaches for autism are typically multidisciplinary, encompassing behavioral intervention strategies, social skills training, occupational therapy, speech therapy, and sensory integration therapy. These interventions aim to address social limitations, restricted interests, repetitive behaviors, and challenging behaviors. Studies have highlighted that early intervention, particularly when initiated before age 4, is highly effective in improving cognitive, communication, adaptive, and social functioning among autistic individuals. Additionally, early intensive behavioral and educational therapy has been shown to significantly reduce inappropriate behaviors such as aggression, hyperactivity, and temper tantrums. It is vital to note that there is no one-size-fits-all approach to treating autism. Each treatment strategy is highly customized, and tailored to individual strengths, challenges, and differences. As treatment plans are implemented, ongoing assessments and adjustments are necessary to address evolving needs and optimize outcomes.
Caregivers are also essential members of the treatment team, playing a crucial role in implementing strategies learned during therapy sessions and providing consistent support and reinforcement at home and in the community.3,10
Treatments and Interventions for Level 1 Autism
Autistic individuals classified at level 1 in social communication may benefit from management that focus on enhancing their social interactions. Speech therapy or coaching can be instrumental in helping them navigate social nuances and develop communication skills that facilitate meaningful interactions with others. Additionally, behavioral therapy, particularly Applied Behavior Analysis (ABA), is commonly utilized to address level 1 restricted and repetitive behaviors. Applied behavior analysis operates on the premise that behavior is influenced by environmental factors, and by systematically analyzing and modifying these factors, individuals can learn new behaviors and reduce maladaptive ones. This approach involves setting specific intervention targets and employing positive reinforcement techniques such as verbal praise, tokens, or edible rewards to encourage desired behaviors and learning outcomes. Applied behavior analysis has been shown to be highly effective in enhancing intellectual functioning, language development, daily living skills acquisition, self-regulation, and social interactions. In addition to behavioral interventions, medications may be prescribed based on specific symptoms exhibited. For instance, melatonin has been studied extensively for its efficacy in addressing sleep disturbances among autistic children and adolescents. Multiple double-blind, placebo-controlled studies support its use as a complementary alternative treatment. At school, individuals diagnosed with level-1 autism may benefit from accommodations such as extra time for tests and intermittent assistance from an education assistant. Participation in social skills groups and off-campus job training programs during high school is also encouraged as it can provide valuable opportunities for skill development and community integration.1,3,10
Treatments and Interventions for Level 2 Autism
Individuals diagnosed with level 2 autism often require comprehensive interventions to address their unique challenges in social communication and behavior regulation. Speech therapy and communication interventions are essential components of treatment. These aim at enhancing language development, social communication skills, and functional communication abilities. Social skills coaching helps individuals navigate social interactions, develop peer relationships, and understand social cues in various contexts. Occupational therapy and sensory integration techniques are integral in addressing sensory sensitivities, motor coordination difficulties, and sensory processing challenges. These therapies aim to improve sensory regulation, fine and gross motor skills, and adaptive functioning in daily activities. Behavioral therapies, particularly applied behavior analysis (ABA) therapy, are central to addressing repetitive and stereotypic behaviors. Level-2 ABA therapy modifies behaviors through a similar approach to treating level-1 autism, structured interventions, reinforcement techniques, and management strategies tailored to the individual’s specific needs. Medications may be prescribed to manage more intense repetitive and stereotypic behaviors, providing individuals with greater behavioral regulation. These may include second-generation antipsychotics, selective serotonin reuptake inhibitors (SSRIs), and mood stabilizers such as valproate. In educational settings, individuals with level 2 autism often require scribing or reading support, access to an education assistant to help with social interactions during recess and lunch breaks, and adapted schoolwork tailored to their ability. 1,3,10
Treatments and Interventions for Level 3 Autism
Similar to level-2 autism, individuals with level-3 autism require a range of therapies, including speech therapy, coaching, occupational therapy, sensory integration, and intensive behavior therapies. However, these treatments are significantly more comprehensive and frequent in scheduling to address the substantial challenges these individuals face. Level-3 autistic individuals may also require additional interventions like augmentative and alternative communication (AAC) systems that facilitate communication, respite care, and specialized recreational programs. Medications are often necessary to manage symptoms related to aggression, social withdrawal, hyperactivity, self-injurious behavior, and sleep disturbances. While typical neuroleptics such as pimozide and haloperidol have been reported to be effective in treating behavioral problems, their use may be limited due to the risk of tardive dyskinesia. Risperidone is commonly used as a first-line medication for children and adolescents with extreme irritability, showing efficacy in reducing self-injury, aggression, and agitation. Still, it may be associated with adverse effects such as increased appetite, weight gain, sedation, tremor, and drooling. Aripiprazole has also demonstrated efficacy and safety in treating tantrums, aggression, and self-injury in children and adolescents with autism. Educational accommodations for individuals with level-3 autism often include one-on-one time with an education assistant, access to a separate education setting such as a resource room, and modified level-specific activities tailored to their needs. In high school, specialized programs may focus on functional literacy, numeracy, and life skills to facilitate independence and meaningful participation in daily activities. 1,3,10
Supporting parents of autistic children is vital for ensuring the well-being and continued development of the child. These supports include early intervention plans and services, parent education, and assistance to prevent stress and burnout. Early intervention programs and services are designed to identify and address delays and challenges as early as possible. Research shows that during early childhood the brain is highly responsive, and intervention geared towards addressing core deficits during this sensitive period can lead to better outcomes, improving long-term trajectory. Numerous studies have shown that autistic children who receive early intervention demonstrate greater gains in communication, social interaction, adaptive behavior, and cognitive skills compared to those who receive intervention later or not at all. Early intervention programs also support families by providing information about autistic characteristics, treatment options, and strategies for managing challenging behaviors, along with training sessions that teach parents practical techniques for interacting with their children. These programs also provide emotional support and connect families to valuable resources, including specialists, support groups, advocacy organizations, and financial assistance programs. Not only do these services help parents better understand their child’s needs, but they also educate them on relevant laws, regulations, and educational policies related to autism. By understanding the legalities, parents can become effective advocates for their child’s rights.11
Stress and burnout are serious concerns for parents of children with autism, as they often face significant challenges in providing care while managing the demands of daily life. The continuous need for vigilance, the complexities of navigating healthcare and educational systems, and the emotional toll of witnessing their child’s struggles can all contribute to feelings of exhaustion. In addition, the constant advocacy and coordination required to ensure their child receives appropriate services and accommodations can further exacerbate parental stress levels. Left unaddressed, chronic stress and burnout can have detrimental effects on parents’ mental and physical well-being, potentially impacting their ability to provide effective support to their children. It is essential parents of autistic individuals recognize the signs and seek support promptly. These supportive services include counseling, respite care, and peer support networks. Counseling and therapy services offer parents the opportunity to vocalize their concerns and learn effective techniques to manage stress. Respite care services provide temporary relief as trained caregivers look after their child. Peer support networks, whether online or in-person, further complement this support by imparting guidance and advice. 11
There are several national support groups and resources for autism. Prominent support groups include the Autism Society of America (ASA), Autism Speaks, National Autism Association (NAA), and Autism Science Foundation (ASF). These organizations offer numerous services, including information and resources, support groups, advocacy, and community events to help autistic individuals and their families navigate their journey and access the support they need.
Founded in the mid-1960s, the Autism Society of America (ASA) is the oldest autism advocacy organization providing support, resources, and advocacy at national and local levels. They offer information on autism diagnoses, explain treatment options, and organize events to raise autism awareness. The Autism Society of America also advocates for policies and legislation that support autistic individuals and their families. Autism Society of America’s extensive network of affiliates is spread across the country, each committed to providing direct support, educational programs, and community engagement opportunities.11-15
Autism Speaks is a prominent autism advocacy organization founded in 2005. It aims to increase awareness, fund research, and advocate for policies that benefit autistic individuals. Funding focuses on research projects aimed at understanding the causes of autism, developing effective treatments, and improving quality of life. This organization provides an abundance of resources and support, including toolkits, educational materials, and online support groups. Autism Speaks also hosts events and campaigns to promote acceptance and understanding about autism in society.
The National Autism Association (NAA) is a nonprofit organization founded with a focus on supporting families affected by autism. Established in 2003, NAA offers safety tools, treatment information, therapies, and guidance on navigating educational and healthcare systems. The Autism Science Foundation (ASF) is a nonprofit organization founded in the early 2000s, that is dedicated to advancing innovative research projects aimed at understanding the underlying biology, genetics, and environmental factors contributing to autism. The foundation provides grants to scientists conducting innovative research and supports programs that promote evidence-based interventions and treatments for individuals with autism. 11-15
Predicting the trajectory of outcomes in autism poses significant challenges due to the extensive range of cognitive, linguistic, social, and behavioral abilities linked to the disorder. Although outcomes for adults with autism have improved overall over recent years, many remain highly dependent on others for support. In adulthood, autism causes health disparities, impedes social relationships, impacts community integration, limits educational prospects, reduces levels of independence, and hinders employment opportunities. These effects are more pronounced with late diagnosis and lack of effective treatment. Such autistic individuals often face various health disparities because of communication difficulties, sensory sensitivities, and challenges with social interaction, which result in barriers to accessing healthcare services. The limited availability of healthcare providers with expertise in autism further exacerbates this issue. There is some evidence that suggests autistic adults have poor health and shorter life spans compared to neurotypical individuals. Reviews of medical records have revealed that adults recently diagnosed with autism exhibit elevated rates of seizures, hypertension, dyslipidemia, sleep disorders, and psychiatric issues compared to age and sex-matched controls. Additional studies indicate that while autistic adults utilize healthcare services more frequently than adults with ADHD or those without any condition, autistic women often receive less gynecologic care and cervical cancer screenings. Premature mortality among autistic adults is linked to various medical conditions, particularly epilepsy, especially among those with concurrent intellectual disabilities. Autistic individuals, particularly women and those without intellectual disabilities, have notably higher rates of suicide.16,17
The social prospects of autistic individuals also widely vary as they are based on multiple factors, including the severity of autism, frequency of early intervention, support systems, and societal understanding and acceptance of neurodiversity. Those who face challenges in social interaction often continue to have difficulty understanding social cues, initiating and maintaining conversations, and forming meaningful relationships. They tend to remain isolated and withdrawn. However, those who receive appropriate support, therapy, and accommodations typically develop sufficient social skills to find fulfilling social connections. Increasing acceptance of autism in society can also help enhance social prospects as it helps foster inclusive environments for interaction and integration.
The educational studies and prospects for autistic individuals vary widely, with some managing to obtain academic qualifications and even pursuing higher education, such as college or postgraduate studies, and securing stable employment. However, a significant portion still faces challenges in this area and, therefore, remain highly dependent on their families or require residential provision. While national surveys of autistic young adults found that the overall rate of paid employment following high school was approximately 55%, these jobs tended to be low-paying and did not offer sufficient financial support for independent living. Of those autistic individuals who expressed a desire for independence, many were constrained by financial limitations preventing them from being more self-sufficient. These findings underscore the complex challenges faced by autistic individuals in navigating the transition to adulthood and the need for lifelong support.16,17
When Caring for Children with Autism
When caring for children with autism in a healthcare setting, nurses should consider several factors to provide effective and compassionate care. Nurses should have a solid understanding of the characteristics and challenges associated with autism. This includes recognizing the core symptoms, such as communication difficulties, social interaction challenges, and repetitive behaviors. In addition, nurses must realize that every child with autism is unique, and they should work with the child’s family to gain detailed insight into the child’s preferences, strengths, challenges, and communication style. This collaborative approach allows nurses to tailor their care strategies to meet the specific needs of each child. As communication hurdles will be present, nurses should adopt various alternative communication methods such as sign language, picture symbols, communication books, speech-generating devices, and mobile applications. Many autistic children have sensory sensitivities or aversions. Nurses should be aware of these sensitivities and create a calming and sensory-friendly environment whenever possible. This may include minimizing noise, providing dim lighting, and using fabrics the child prefers. As autistic children often thrive in structured and predictable environments, nurses can help by establishing consistent routines, by providing clear step-by-step instructions and preparing children in advance for any changes or transitions in treatment.1,2,10
Some autistic children may exhibit challenging behaviors in healthcare settings, such as aggression, self-injury, or meltdowns. Nurses can help support the child by employing positive reinforcement strategies, de-escalation techniques, and behavior management interventions to keep them safe. Positive reinforcement strategies involve providing rewards, incentives, or acknowledgments when a child exhibits a specific behavior. Depending on the child, this approach may include offering verbal praise, tangible rewards, such as stickers or small toys, or allowing the child to engage in a preferred activity. De-escalation techniques involve maintaining a calm and composed demeanor to prevent exacerbating the situation. This includes speaking softly and using gentle gestures to convey reassurance and empathy. Nurses should attempt to reduce sensory stimuli, such as bright lights or loud noises, and provide the child with space and time to self-regulate. Redirecting the child’s attention to calming activities or interests may also help distract them from triggering situations. If the autistic child remains uncooperative, nurses should explore alternative approaches to tasks or procedures or encourage caregivers to reschedule appointments. 1,2,10
When Caring for Adults with Autism
Adult primary care nurses should be aware of the increasing number of people diagnosed with autism. This includes adolescents transitioning into adult medical care and those diagnosed in adulthood. Both patient groups require assistance with medical management, referrals, and anticipatory guidance regarding their health conditions. At the same time, triggers can vary widely among such autistic patients and may include anything from sensory sensitivities to changes in routine. Nurses should collaborate with patients, their families, and other healthcare professionals to identify potential triggers and develop individualized strategies to minimize their impact. Based on the autistic patient’s preferences and challenges, nurses should proactively respond to accommodation requests, not only to save time and resources but also to boost therapeutic relationships. To build trust and facilitate communication, nurses should leverage patients’ interests and fixations to motivate their participation in healthcare. By connecting with autistic patients through their interests, nurses establish rapport and create a conducive environment for care. Communication methods should always align with the patient’s abilities. Some autistic adult patients may understand spoken language but may not be able to speak, while others may speak fluently but may not be able to process information correctly or may only repeat the words they hear. Utilizing supportive or alternative communication modes, such as picture-based systems or sign language, enhances patient understanding and engagement in their healthcare journey. If the autistic patient cannot communicate, ask caregivers for information about their particular abilities and needs but always acknowledge the patient’s presence. Assume that they fully understand your words, even if they may not be able to express their understanding. This inclusive approach demonstrates the patient is being treated with respect and dignity, helping to build trust. Nurses should also be aware of the pervasive nature of autism and how it can be taxing on the entire family. It is important to remember there may be an ongoing grieving process within the family, and it is vital to assess family concerns compassionately. 1,2,10,15,16
When interacting with adult patients with autism, nurses should understand the ABCs of their behavior, i.e., Antecedent (the trigger, what prompted the behavior), behavior (during, the action or response), and Consequence (the result of the behavior). For example, an autistic patient may appear to be destructive, but this behavior may be to fulfill a need. While nurses should take care not to put themselves in harm’s way, they must look beyond the manifestation of the behavior to help the patient meet their needs appropriately. This approach can help nurses interpret and respond to a majority of challenging behaviors associated with autism. Implementing de-escalation techniques should always be down after carefully considering various factors, including the individual’s age, coping mechanisms, and triggers, as techniques suitable for autistic children might not be as effective for autistic adults. Some patients may have developed coping strategies over time to manage stress or anxiety, and nurses should respect these coping mechanisms. For instance, if an individual finds solace in certain sensory stimulations, nurses can incorporate these stimuli into the de-escalation process. Nurses should also be vigilant for atypical presentations of common medical problems and consider differential diagnoses, including medical conditions contributing to behavior changes. 1,2,10,15,16
Autism is a complex condition that sees neurological and behavioral differences manifest in a broad spectrum of symptoms and challenges. While our understanding of autism has evolved significantly over time thanks to advancements in diagnostic criteria, classification, and interventions, the exact cause and cure remain unknown. What is understood is that autism is a multifactorial condition where genetic and environmental factors play crucial roles in its development and symptoms. Accurate diagnosis is pivotal to ensure patients receive timely and appropriate interventions. These interventions include a range of multidisciplinary treatments ranging from speech therapy to educational accommodations. Combined, they offer tailored support that can improve long-term outcomes. Across the country, numerous national support groups and organizations strive to provide valuable information, guidance, and community engagement opportunities for autistic individuals and their families. By raising awareness, advocating for policies, and funding research, these organizations contribute extensively to creating more supportive environments for the neurodiverse. Looking ahead, addressing the health, social, and employment prospects of autistic individuals remains a challenge. While progress has been made in improving outcomes, fostering greater acceptance, and understanding, significant disparities and barriers persist. Healthcare professionals, including nurses, must continue to prioritize person-centered care, recognizing the unique needs and strengths of each individual with autism. By fostering a deeper understanding of autism, promoting inclusive environments, and advocating for comprehensive support services, communities can move towards creating a more equitable and inclusive society for individuals with autism and their families.
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