Learning Objectives
By the end of this section, you will be able to:
- Define autism spectrum disorder
- Understand the different types of family support available to children with autism spectrum disorder
- Identify resources for information and support
Autism spectrum disorder (ASD) can be found four times more often in males than in females. It is seen in all racial, ethnic, and socioeconomic groups (CDC, 2022d). The prevalence of ASD was 50 percent higher in White children than among Black or Hispanic children in years prior to 2016, but between 2016 and 2018, it evened out (Maenner et al., 2023). This developmental disorder has multiple causes that result in brain differences that affect a person’s interaction with others, communication, and learning. According to the CDC (2022d), in 2020, approximately one in thirty-six children were identified as having ASD.
Definition of Autism Spectrum Disorder
The developmental disorder of the brain that causes impairment in behavior, communication, interaction with others, and learning is called autism spectrum disorder (ASD). The signs and symptoms of ASD usually begin before a child turns three years old. These symptoms continue through the life span, but can change or improve over time. ASD is characterized by the following: (1) difficulty with communication and interaction with other people, (2) restricted interests and repetitive behaviors, and (3) symptoms that hurt the person’s ability to function properly in school, work, and other areas of life. Autism is known as a “spectrum” disorder because there is wide variation in the type and severity of symptoms experienced by individuals. Although ASD is a lifelong disorder, treatments and services can improve a person’s symptoms and ability to function (National Institute of Mental Health, 2022).
Since the publication of the DSM-5, several disorders have been classified as falling under ASD rather than as separate from it or have been removed from the classification. For example, pervasive developmental disorder not otherwise specified (PDD-NOS) has been reclassified as under ASD and was formerly used when the child did not meet all the criteria for autism. Asperger syndrome is a disorder that has been reclassified as under ASD and has no requirement for onset by age three or language delay, and no criteria for communication or cognitive deficit (Gehret, 2022). Another disorder reclassified as falling under ASD is childhood disintegrative disorder (CDD) is rare, affecting only 1.7 in 100,000 children (Gehret, 2022), and is defined as a severe form of autism with a late onset, usually around the age of four years.
One disorder removed from the DSM-5 list of autism disorders is Rett syndrome, which affects mostly girls and often displays symptoms that are similar to autism. Less than 1 percent of cases are inherited; instead, they come from a gene mutation (Gehret, 2022). Due to genetic etiology, this disorder is a distinct category and, therefore, removed from DSM-5 diagnostic criteria.
Screening and Diagnosis
Because there is no specific test to diagnose this disorder, parents and health providers look at how the child is developing and meeting age benchmarks. It is important to diagnose a child as early as possible so that they can begin to receive services that will support their development over time. Health-care providers can sometimes diagnose ASD as early as eighteen months of age (CDC, 2022e), with most children being diagnosed before thirty months of age.
The American Academy of Pediatrics (2023) recommends screening children during their regular pediatric appointments at ages eighteen months and twenty-four months. This screening helps to identify developmental and behavioral challenges. The parent is given the M-CHAT-R/F screening tool, a twenty-three-question standardized form to complete. Examples of the yes/no questions include “Does your child like climbing on things, such as stairs?” and “Does your child look you in the eye for more than a second or two?” This form is used in combination with health history, family history, and observation of the child’s development, especially if behavior is delayed or different than expected. Additional referrals for psychological evaluation and support can follow analysis of the M-CHAT-R/F.
There are also tests that check for other medical conditions that can cause ASD-like symptoms (Healthychildren.org, 2023) and tests to check for symptoms that often accompany ASD. For instance, lead screening involves a blood test to check for serum blood levels of lead in children who live in a high-risk environment. Moreover, providers may recommend genetic testing, because 42 percent of children will have a genetic component. Some risk factors include a family that already has one child with ASD, having chromosomal conditions like Fragile X syndrome, birth complications, and being born to older parents (CDC, 2022e). They may also recommend a test to check for an iron or vitamin deficiency because most children with ASD are picky eaters.
Link to Learning
Watch this American Academy of Pediatrics informational video to help parents understand the CDC’s 2023 statistics about the prevalence of autism spectrum disorder. It can be useful when educating families receiving a diagnosis of ASD in their child.
Areas of Concern
A parent or guardian may become concerned when they notice that their child is not meeting published developmental guidelines. The CDC (2023) checklists help parents document milestones that their child is or is not meeting. Parents can take the completed checklist for the primary care provider to review at scheduled well-child appointments. This form includes social/emotional, language/communication, cognitive, and movement/physical developmental milestones for specific age groups along the developmental trajectory. If the provider suspects ASD, then they may refer the child to speech, behavioral, or occupational therapies (Healthychildren.org, 2023).
A parent may also notice that their child is having a problem with emotional dysregulation, where an individual is unable to control their feelings and emotions. This is common in people who have ASD (Cleveland Clinic, 2023c). Most children will experience temper tantrums at some point, but they usually grow out of them. A person with emotional dysregulation is not able to control their emotions and that can result in mood swings, angry outbursts, and losing their temper.
Another sign that parents may observe in their child is the presence of unusual repetitive and stereotyped behaviors, such as hand flapping, body rocking, repeating words, or placing toys in the same order all the time (CDC, 2022e). Other areas of concern include difficulty in social interactions, communication, and relationships.
Social Interactions
People with ASD have difficulty with social communication and interaction, experience restricted interests, and exhibit repetitive behaviors. Here are some examples of behaviors in these categories (National Institute of Mental Health, 2022):
- making little or inconsistent eye contact
- not looking at or listening to people
- rarely sharing enjoyment of objects or activities by pointing or showing things to others
- being slow to respond (or failing to respond) to someone calling their name
- having difficulties with the back-and-forth nature of a conversation
- talking at length about a favorite subject without noticing that others are not interested or without giving others a chance to respond
- exhibiting facial expressions, movements, and gestures that do not match what is being said
- using a tone of voice that may sound flat and robotlike
- having trouble understanding another person’s point of view or being unable to understand other people’s actions
- repeating certain behaviors or exhibiting unusual behaviors
- echolalia, which means the involuntary repetition, or echo, of words, phrases, or vocalizations
- having a lasting, intense interest in certain topics, such as numbers, details, or facts
- having overly focused interests, such as with moving objects or parts of objects
- getting upset by slight changes in a routine
- being more or less sensitive than other people to sensory input, such as light, noise, clothing, or temperature; this sensitivity can present as physical touch, like a hug, actually being experienced as painful; items, such as seams on pants, can be overwhelming and extremely agitating
Although people with ASD experience many challenges, they also often have many strengths, including these strengths (National Institute of Mental Health, 2022):
- being able to learn things in detail and remember information for long periods of time
- being strong visual and auditory learners
- excelling in math, science, music, or art
Communication
Communication skills are different for each person with ASD. According to Posar et al. (2022), approximately 25 to 30 percent of children with this illness do not develop language skills at all or remain minimally verbal Some people with ASD use single words or repeat the words they hear others say. Others have great vocabularies and can talk about specific topics at length (NIH, 2020). It all depends on their level of autism and its effect on their intellectual and social development.
Relationships
Due to being unable to pick up on cues from others or an inability to initiate conversations or interactions, relationship building can be difficult. Their repetitive behaviors, such as pacing and hand flapping, may be distracting or uncomfortable for others (Autism Speaks, n.d.).
Family Support
Families must adapt to the needs of the child with ASD. Sensory considerations, such as modifying the environment, creating routines, or using other strategies can help manage discomfort in a child with ASD (Autism Speaks, n.d.). Siblings may feel added stress as their responsibilities within the household increase. Lack of insurance coverage for therapies may increase parental stress. Having family outings can be difficult due to the decreased social skills of the child with ASD.
Nurses can support families through careful assessment of their needs. Nurses must consider the severity of the ASD of the child and how much the parents understand about ASD. Nurses can assist parents in finding community resources and services that support the care of the child with ASD. These services must be culturally relevant and affordable for the family. Parents must be included in the planning process, just as clients are included when nurses create individual care plans.
Levels of Support by Severity
In order for a child to be diagnosed with ASD, they must meet certain criteria set forth by DSM-5 (CDC, 2022d). The child must have deficits in the three areas of social communication and interaction, as well as exhibit two to four restricted/repetitive behaviors. There are three levels of support that are based on severity of need; three is the highest level of support (Table 23.2).
| Level | Supports |
|---|---|
| 1 | Needs some support Can communicate with others but with difficulty May not understand social cues and body language of others |
| 2 | Needs substantial support Has difficulty communicating or socializing with others Performs repetitive behavior, called stimming, that helps them self-regulate |
| 3 | Needs very substantial support Has extreme difficulty with self-expression Has difficulty completing activities of daily living (ADLs) Is prone to neglect, abuse, and discrimination |
Interdisciplinary Team
Current treatments for ASD seek to reduce symptoms that interfere with daily functioning and quality of life. ASD affects each person differently, meaning that people with ASD have unique strengths and challenges and thus different treatment needs. Treatment plans typically involve multiple professionals with interventions customized to the individual (National Institute of Mental Health, 2022). As individuals with ASD exit high school and grow into adulthood, additional services can help improve their health and daily functioning and facilitate social engagement. Supports may help complete job training, find employment, and secure housing and transportation (National Institute of Mental Health, 2022).
There are many categories of treatments available, and some treatments involve more than one approach. Treatment categories include (National Institute of Mental Health, 2022):
- behavioral
- developmental
- educational
- social-relational
- pharmacological
- psychological
- complementary and alternative
Link to Learning
This article provides another viewpoint regarding use of applied behavior analysis (ABA).
Developmental Approaches
Developmental approaches focus on improving specific developmental skills, such as language skills or physical skills. Developmental approaches are often combined with behavioral approaches. The most common developmental therapy for people with ASD is speech and language therapy. Speech and language therapy helps improve the person’s understanding and use of speech and language. Some people with ASD communicate verbally. Others with severe symptoms of ASD may communicate using signs, gestures, pictures, or an electronic communication device (National Institute of Mental Health, 2022). Occupational therapy teaches skills to help the person live as independently as possible. Skills may include dressing, eating, bathing, and relating to other people. Occupational therapy can also include sensory integration therapy to help improve responses to sensory input that may be restrictive or overwhelming (National Institute of Mental Health, 2022). Physical therapy may help improve physical skills, such as fine movements of the fingers or larger movements of the trunk and body (National Institute of Mental Health, 2022).
Educational Approaches
Educational treatments take place in a classroom setting. One type of educational approach is the Treatment and Education of Autistic and Related Communication-Handicapped Children (TEACCH) approach. TEACCH is based on the idea that people with autism thrive on consistency and visual learning. It provides teachers with ways to adjust the classroom structure to improve academic and other outcomes. For example, teachers can write daily routines and place them in clear sight, set boundaries around learning stations, and accompany verbal instructions with visual instructions or physical demonstrations (National Institute of Mental Health, 2022).
Behavioral Approaches
Behavioral approaches focus on changing an individual’s behaviors by promoting understanding of what happens before and after the behavior. A notable behavioral treatment for people with ASD is called applied behavior analysis (ABA). Applied behavior analysis encourages desired behaviors and discourages undesired behaviors to improve a variety of skills, and progress is tracked and measured (National Institute of Mental Health, 2022).
Social-Relational Approaches
Social-relational treatments focus on improving social skills and building emotional bonds. For example, “social stories” provide simple descriptions of what to expect in a social situation. “Social skills groups” provide opportunities for people with ASD to practice social skills in a structured environment.
Pharmacological Approaches
There are no medications used to treat ASD, but medications may be used to treat symptoms and improve functioning. For example, medication may be used to manage high energy levels, improve focus, or limit self-harming behavior, such as head banging or hand biting. Medication may also treat concurrent psychological and medical conditions, such as anxiety, depression, seizures, or sleep problems (National Institute of Mental Health, 2022).
Psychological and Behavioral Approaches
Psychological and behavioral approaches can help people with ASD cope with anxiety, depression, and other mental health issues. For example, CBT helps individuals focus on the connections between their thoughts, feelings, and behaviors. During CBT, a therapist and the individual work together to identify goals and change how the person thinks about a situation to change how they react to the situation (National Institute of Mental Health, 2022).
Complementary and Alternative Treatments
Some individuals with autism use special diets, herbal supplements, chiropractic care, animal therapy, art therapy, mindfulness, or relaxation therapies (National Institute of Mental Health, 2022). Treatment is most effective when tailored to the individual, and additional enriching therapies can help individuals with ASD to thrive.
Nurse’s Role
The nurse’s role is primarily education-based. Nurses can educate themselves on new treatment techniques, community resources, and how to support the family of their clients who have ASD. Nurses can work with families to develop the interventions that will work best for the individual client. If the client needs help with communication, the nurse can assist the family with getting communication devices, such as picture boards (Lesser & Ebert, 2020). School nurses can review the use of these tools with their students to build rapport in the school setting.
Clinical Judgment Measurement Model
Take Action: The Nurse Performs an Intervention
Care of a client with ASD requires interventions that fit the abilities of the individual and are based on the specific level of support required by that individual. Depending upon where that individual falls on the autism spectrum, the nurse can choose from a wide variety of interventions. For instance, if a nurse is caring for several clients who need Level 1 support, a good intervention would be to facilitate a social cues group to teach them about understanding social cues and what they mean.
(Ignatavicius & Silvestri, 2023)
Community Services and Information Resources
There are several levels of intervention services available depending on when ASD is suspected and diagnosed (Healthychildren.org, 2023). The first is early intervention programs available through the state if the child is under the age of three when ASD is first suspected. Once the child is between ages three and five, the parent can contact the local school district to find out if the child is eligible to attend a developmental preschool program.
The Autism Speaks website contains a variety of useful information about available resources. This website has filters for state, life stage, and level of support that the user can click to get the information that best fits the individual they are hoping to support. The National Autism Association is another useful site to explore resources; education for individuals, families, first responders, and teachers; and ways to advocate for those with autism.