Autism spectrum disorder in children and adolescents: Overview of management

INTRODUCTION — Autism spectrum disorder (ASD) is a biologically based neurodevelopmental disorder characterized by persistent deficits in social communication and social interaction and restricted, repetitive patterns of behavior, interests, and activities.

This topic will provide an overview of the treatment of ASD. Related topics are presented separately:

●(See "Autism spectrum disorder (ASD) in children and adolescents: Terminology, epidemiology, and pathogenesis".)

●(See "Autism spectrum disorder in children and adolescents: Clinical features".)

●(See "Autism spectrum disorder in children and adolescents: Evaluation and diagnosis".)

●(See "Autism spectrum disorder in children and adolescents: Behavioral and educational interventions".)

●(See "Autism spectrum disorder in children and adolescents: Pharmacologic interventions".)

●(See "Autism spectrum disorder in children and adolescents: Complementary and alternative therapies".)

TERMINOLOGY — Autism spectrum disorder encompasses disorders previously known as autistic disorder (classic autism, sometimes called early infantile autism, childhood autism, or Kanner's autism), childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified, and Asperger disorder (also known as Asperger syndrome). (See "Autism spectrum disorder in children and adolescents: Evaluation and diagnosis", section on 'Diagnostic criteria'.)

GENERAL PRINCIPLES — Autism spectrum disorder (ASD) is a chronic condition that requires a comprehensive treatment approach. Individuals with ASD have varying degrees of impairment in social and behavioral function. Management must be individualized according to the child's age and specific needs [1]. Management of ASD requires a multidisciplinary approach that makes use of the child's strengths to address his or her weaknesses.

Goals — The overarching goals of treatment are to maximize functioning, move the child toward independence, and improve the quality of life. Specific goals address the core deficits of ASD and seek to [1-3]:

●Improve social functioning and play skills

●Improve communication skills (both functional and spontaneous)

●Improve adaptive skills

●Decrease nonfunctional or negative behaviors

●Promote academic functioning and cognition

Early intervention — There is a consensus that treatment for ASD must be individualized depending upon the specific strengths, weaknesses, and needs of the child and family. Early diagnosis and early intensive treatment have the potential to affect outcome, particularly with respect to behavior, functional skills, and communication [1,4-7]. Although there is no cure, symptoms can decrease over time and in a small minority be minimized to the extent that they no longer cause disability [6,8,9].

There is increasing evidence that intervention is more effective when initiated as early as possible [10-14]. The establishment of appropriate management strategies in the early years can help to minimize or even avoid subsequent behavioral problems [14-16].

Specialist involvement — Children with a diagnosis of ASD should have ongoing follow-up with a specialist (eg, developmental and behavioral pediatrician, neurologist, psychologist, psychiatrist) or a team of providers who can monitor progress, provide recommendations for behavioral programming, and screen for medical concerns. The evaluation or initial management team of providers may include [17]:

●Developmental pediatrician, child neurologist, child psychiatrist

●Psychologist or neuropsychologist

●Geneticist or genetics counselor

●Speech language pathologist

●Occupational therapist

●Audiologist

●Social worker

The frequency of visits with specialist providers depends upon the child's progress and/or special issues that require attention. In the United States, services covered by insurance may be used to augment existing early intervention or special education services. In some cases, insurance-funded services may comprise the majority of an individual child's programming.

Treatment setting — Therapies for children with ASD may be provided by an early intervention program, school-based special education program, or by therapists in private practice.

In the United States, the Individuals with Disabilities Education Act (IDEA) guarantees a free and appropriate public education for every child with a disability, including those with ASD [18]. Each state or territory develops its own policies for carrying out the IDEA. In most states, a specific agency provides early intervention services before entry into preschool or kindergarten (the age varies depending upon the state). (See "Definitions of specific learning disorder and laws pertaining to learning disorders in the United States", section on 'Individuals with Disabilities Education Act'.)

As the child becomes eligible for school-based services (the age varies depending upon the state), the public school system becomes responsible for provision of services and education. The services provided are outlined in an individualized education program (IEP), which is reviewed at minimum of once a year. (See "Definitions of specific learning disorder and laws pertaining to learning disorders in the United States", section on 'Individuals with Disabilities Education Act'.)

In the United States, insurance coverage for ASD treatment is available in most states and the District of Columbia. The National Conference of State Legislatures provides a current list of states that have laws providing some insurance coverage for medically necessary therapies for ASD.

TREATMENT MODALITIES — Treatment for autism spectrum disorder (ASD) focuses on behavioral and educational interventions that target the core symptoms of ASD (ie, deficits in social communication/interaction and restricted, repetitive patterns of behavior, interests and activities (see "Autism spectrum disorder in children and adolescents: Evaluation and diagnosis", section on 'Diagnostic criteria') [14]. Pharmacologic interventions may be used to address medical or psychiatric comorbidities or provide symptom control but do not treat the core deficits. In addition, many families seek complementary or alternative therapies [19,20].

Specific treatment programs should be individualized according to the child's functioning and needs [1]. Treatment programs should be monitored to ensure appropriate response to therapy. The program should be reviewed and modified as the child's needs change over time. (See "Autism spectrum disorder in children and adolescents: Behavioral and educational interventions", section on 'Overview'.)

Behavioral and educational interventions — The importance of early intensive behavioral and educational interventions in improving outcomes for children with ASD is well documented [1,10-14]. Most of the research has focused on early-preschool and school-age children. There is less robust information about the efficacy of treatment programs in children younger than two years or in adolescents. No single therapy has proven to be most effective. However, certain therapies have more data to support their efficacy than others.

Core features of successful autism educational programs include [1,10-12,14]:

●A high staff-to-student ratio (1:1 or 1:2)

●Individualized programming for each child

●Teachers with special expertise in working with children with autism

●A minimum of 25 hours per week of services

●Ongoing program evaluation and adjustment

●A curriculum emphasizing attention, imitation, communication, play, social interaction, regulation, and self-advocacy

●A highly supportive teaching environment

●Predictability and structure

●Functional analysis of behavior problems

●Transition planning

●Family involvement

●Close monitoring and modification as the child's needs change

Behavioral and educational interventions for children with ASD are discussed separately. (See "Autism spectrum disorder in children and adolescents: Behavioral and educational interventions".)

Psychopharmacologic interventions — Psychotropic medications often are used in children with ASD to treat targeted symptoms including:

●Hyperactivity, inattention, and impulsivity

●Aggression, outbursts, and self-injury

●Anxiety

●Obsessive-compulsive behaviors, rigidity, and repetitive behaviors

●Depressive symptoms

●Sleep dysfunction

These interventions are discussed separately. (See "Autism spectrum disorder in children and adolescents: Pharmacologic interventions".)

Psychopharmacologic interventions do not treat the underlying ASD. However, they can improve the child's functioning and the ability to participate in behavioral interventions. Psychopharmacologic interventions should be used in conjunction with appropriate behavioral and environmental interventions. (See "Autism spectrum disorder in children and adolescents: Behavioral and educational interventions", section on 'Overview'.)

Complementary and alternative therapies — Many families seek complementary and alternative therapies for ASD [19,20]. However, they may not mention these therapies to their traditional health care provider unless the provider asks about them specifically.

Complementary and alternative therapies for ASD are diverse, ranging from biologically based therapies (eg, vitamin or mineral supplements, special diets), to more invasive treatments, such as hyperbaric oxygen treatments, chelation, and injectable medications [21]. The medical literature on many complementary and alternative therapies for ASD is limited. Nonetheless, it is essential for providers caring for children with ASD to be aware of such treatments so that they can help the families distinguish effective treatments from those that are unproven, proven to be ineffective, or are potentially harmful [14,17].

Complementary and alternative therapies for ASD are discussed separately. (See "Autism spectrum disorder in children and adolescents: Complementary and alternative therapies".)

ROLE OF THE PRIMARY CARE PROVIDER — The primary care provider plays an important role in: early identification of autism spectrum disorder (ASD); routine health maintenance, preventive care and care coordination for children with ASD; and provision of support, guidance, and advocacy for families of children with ASD.

Early identification — The primary care provider may be the first provider to raise concerns about ASD or with whom the family discusses concerns about ASD. Screening and referral for children with suspected ASD are discussed separately. (See "Autism spectrum disorder in children and adolescents: Surveillance and screening in primary care", section on 'Approach to ASD surveillance and screening' and "Autism spectrum disorder in children and adolescents: Screening tools".)

Medical home — The primary care provider may provide the medical home for children with ASD [17,22]. The medical home approach to care is discussed separately. (See "Children and youth with special health care needs", section on 'Framework of care'.)

Office visits — The deficits in social interaction, communication, sensory aversions, and difficulty with novel situations can make office visits challenging [2]. More time usually is required for appointments. Strategies that may facilitate examination include:

●Communicating with caregivers before and during the visit or procedure about strategies to optimize patient compliance

●A "practice" visit to familiarize the patient with the office setting, staff, and routine

●Having the family use a "social story" or visual topic board reviewing the expected parts of the visit, to help the child understand what to expect

●Allowing enough time to take the history and talk with the parent or caregiver before the examination

●Allowing the child to manipulate instruments and materials

●Keeping instructions simple

●Using simple language for those with lower-level language abilities, speaking clearly, and avoiding abstract language and figures of speech

●Using visual cues and supports

●Having family and/or familiar staff available

●Minimizing portions of the examination that might be overwhelming or overstimulating

Routine care — Children with ASD have the same general health care needs as other children and should receive the same preventive care and screening [2]. (See "Screening tests in children and adolescents", section on 'Common screening tests in pediatrics' and "Standard immunizations for children and adolescents: Overview", section on 'Routine schedule'.)

It is particularly important to obtain information about mealtime behavior, dietary intake, physical activity, and screen time (eg, television, computer) to assess potential nutritional deficiencies (eg, calcium, vitamin D) and decreased bone mineral density [23,24]. It is also important to inquire about alternative or complementary therapies that may affect nutritional status. Children with ASD who have low body mass index, insufficient calcium and energy intake, and a high screen-time to physical activity ratio may be at risk for decreased bone density [24]. They also have increased rates of gastrointestinal symptoms, including constipation, than children without ASD [25]. (See "Dietary history and recommended dietary intake in children" and "Dietary recommendations for toddlers and preschool and school-age children" and "Functional constipation in infants, children, and adolescents: Clinical features and diagnosis", section on 'Contributing factors'.)

Anticipatory guidance regarding safety may need to be adapted for children with ASD, particularly regarding drowning [26,27] and wandering off [28-31]. In a survey of 1218 families of children with ASD, approximately one-half of respondents indicated that their child had tried to elope (ie, run off, bolt) at least once after four years of age [28]. Among those who went missing, 65 percent were in danger of traffic injury and 24 percent were in danger of drowning. The peak age for elopement attempts was 5.4 years. During the "worst year ever" for elopement, 29 percent of respondents reported that elopement attempts occurred more than once per day. The frequency of elopement increased with increasing severity of autism and was often goal-directed (eg, trying to reach a place of enjoyment, trying to escape uncomfortable stimuli, pursuing their special interest, etc). (See "Promoting safety in children with disabilities", section on 'Prevention of elopement'.)

Surveillance for comorbidities — Children with ASD may have or develop a number of comorbid conditions for which the primary care provider can provide surveillance. These include [32]:

●Medical disorders (eg, seizures; potential genetic disorders; lead poisoning in children with pica)

●Developmental and mental health comorbidities (eg, hyperactivity, anxiety, depression, behavioral regulation)

●Sleep problems (eg, late onset, frequent waking, restlessness), which may affect daytime function

●Gastrointestinal, feeding, and nutrition problems (eg, constipation, restricted diet)

●Delays in acquisition of self-help skills (eg, toileting, dressing, hygiene)

Primary care providers should monitor for both medical and mental health concerns and provide appropriate treatment or referral as indicated. When diagnostic studies are necessary, it is important to determine whether the child can participate and how to best prepare him or her for the test.

Access to care — Children with ASD are substantially underserved in the health care setting. Although they have a greater need for specialized health care than other children (with and without disabilities) [33], they and their families have difficulty accessing appropriate care in medical settings [34-36]. They are also more likely than other children with special health care needs (CSHCN), to have delayed or foregone care, receive care that is not family-centered, and have unmet needs for specific health care and family support services [34,35]. Only one in five children with ASD receives care in a medical home, and 63 percent have unmet needs for specialty care services [37]. Additional risk factors such as low socioeconomic status and racial and ethnic minority status further limit access to care [38].

Challenges in accessing care are associated with significant, negative impact on families of children with ASD. In the National Survey of CSHCN (2005-2006), families of children with ASD were more likely than those of other CSHCN to report financial problems, need additional income for the child's medical care, and reduce or stop work in order to care for their child [34].

Family support — Once a child is diagnosed with ASD, the primary care provider plays a critical role in supporting the family [22]. The primary care provider may see the patient and family more often than the specialist(s).

Many families require ongoing education and support to facilitate enrollment in appropriate autism therapy programs. The primary care provider can help the family to understand the essential components of the treatment program and which types of programs have evidence of benefit. (See 'Behavioral and educational interventions' above.)

The primary care provider can help families to understand the special education laws that pertain to children with ASD, educate families about their rights, and help them to navigate the individualized education program (IEP) process [2,22] (see "Definitions of specific learning disorder and laws pertaining to learning disorders in the United States", section on 'Laws affecting the education of students with disabilities'). It is important for primary care providers to know which local or national agencies and organizations provide autism interventions and/or support in their communities so that they can guide the family appropriately.

The primary care provider also can provide advice about the potential benefits and risks of complementary and alternative therapies [22]. (See "Autism spectrum disorder in children and adolescents: Complementary and alternative therapies", section on 'Counseling caregivers'.)

PROGNOSIS

Core symptoms — It is difficult to predict outcomes for children with autism spectrum disorder (ASD), especially for children younger than three years. Some children will retain the diagnosis despite improvement in core symptoms; others, particularly those with milder symptoms, may no longer meet diagnostic criteria for ASD [6,8,9,39-42]. Typically, children who no longer meet criteria for ASD demonstrate some residual social, language, and behavioral symptoms and may meet criteria for language, attentional, and/or mood disorders [42].

Factors that have been associated with positive outcomes include [6,9,10,39,43-46]:

●Presence of joint attention

●Functional play skills

●Higher cognitive abilities

●Decreased severity of ASD symptoms

●Early identification

●Involvement in intervention

●A move toward inclusion with typical peers

Factors that have been associated with less favorable outcomes include:

●Lack of joint attention by four years of age

●Lack of functional speech by five years of age

●Intelligence quotient (IQ) <70

●Seizures or other comorbid medical or neurodevelopmental conditions

●Severe ASD symptoms

Social function and employment — Other outcome data for individuals with ASD are limited and mostly based on a few population sample studies. In many of these studies, social functioning continued to be a concern. In a nationally representative sample of adolescents and young adults with ASD, social isolation was common (55 percent had not gotten together with friends in the previous year; 64 percent had not received any phone calls from friends in the previous year) [47]. Factors associated with more social interaction included the ability to communicate effectively, less severe ASD, lack of poverty, and having parents who advocated for them at school.

Although not examined in the context of social functioning, many individuals with ASD found employment over time. In a 2007-2008 population-based survey of parents, guardians, and young adults with ASD (age 19 to 23 years), 9 percent had attended a vocational or technical education program, 35 percent had attended college (two- or four-year), and 55 percent had paid employment during the first six months after high school [48]. Participation in postsecondary education or employment increased with the number of years out of high school (48 percent at one to two years, 89 percent at four or more years) and was associated with higher functional ability and higher parent or guardian household income.

Employment did not necessarily equate with independence, which was affected by multiple factors. In another long-term study of adults with varying levels of cognitive function, only 12 percent achieved a high level of independence, and overall outcome was variable, even in those with IQ >70 [49]. However, in a cohort of individuals with a high level of comorbid psychiatric conditions (59 percent), as many as 50 percent of adults with average or near-average cognitive ability who continued to meet criteria for a diagnosis of ASD in adulthood achieved a high level of independence in work and home life [17,50]. Nonetheless, relatively few married or were involved in reciprocal relationships, highlighting the persistent deficits in social functioning described above.

Mortality — Although the absolute risk of mortality in children, adolescents, and young adults with ASD is low, it is higher than that in the general population [51-56]. In a longitudinal cohort of individuals with ASD born between 1980 and 2010 who were followed until 2013, the absolute risk of mortality was 0.3 percent, but it was twice that of individuals without ASD [55].

Mortality is often attributed to injuries (eg, drowning, suffocation) and comorbid physical, neurologic, or mental health conditions (eg, epilepsy, intellectual disability) [53,57-59].

Adolescents and adults with ASD appear to be at increased risk of suicide attempts in later life, but it is unclear why [7,60]. In a longitudinal population-based case-control study, the risk of suicide attempt was increased in 5618 adolescents and young adults (age 12 to 29 years) with ASD compared with age- and sex-matched controls [60]. Although the prevalence of suicide-related comorbidities (eg, mood disorders, substance use disorders) was increased in patients with ASD, ASD remained an independent risk factor after controlling for psychiatric comorbidity.

RESOURCES — Online resources for providers and families of children with autism spectrum disorder are provided in the table (table 1).

SOCIETY GUIDELINE LINKS — Links to society and government-sponsored guidelines from selected countries and regions around the world are provided separately. (See "Society guideline links: Autism spectrum disorder".)

INFORMATION FOR PATIENTS — UpToDate offers two types of patient education materials, "The Basics" and "Beyond the Basics." The Basics patient education pieces are written in plain language, at the 5^th to 6^th grade reading level, and they answer the four or five key questions a patient might have about a given condition. These articles are best for patients who want a general overview and who prefer short, easy-to-read materials. Beyond the Basics patient education pieces are longer, more sophisticated, and more detailed. These articles are written at the 10^th to 12^th grade reading level and are best for patients who want in-depth information and are comfortable with some medical jargon.

Here are the patient education articles that are relevant to this topic. We encourage you to print or email these topics to your patients. (You can also locate patient education articles on a variety of subjects by searching on "patient info" and the keyword[s] of interest.)

●Basics topic (see "Patient education: Autism spectrum disorder (The Basics)")

●Beyond the Basics topic (see "Patient education: Autism spectrum disorder (Beyond the Basics)")

SUMMARY

●Approach to management

•Autism spectrum disorder (ASD) is a chronic condition that requires a comprehensive treatment approach. Management must be individualized according to the child's age and specific needs. (See 'General principles' above.)

•Although there is no cure for ASD, early diagnosis and early intensive treatment have the potential to affect outcome. (See 'Early intervention' above.)

●Treatment

•The goals of treatment are to maximize functioning, move the child toward independence, and improve the quality of life. (See 'Goals' above.)

•Treatment of ASD focuses on behavioral and educational interventions that target the core symptoms. Pharmacologic interventions may be used as an adjunct to address medical or psychiatric comorbidities. Treatment programs should be monitored to ensure appropriate response to therapy; the program should be modified as the child's needs change. (See 'Treatment modalities' above.)

●Role of the primary care provider – The primary care provider should provide ongoing evaluation of the child's progress, provide ongoing family education and support, screen for coexisting medical conditions, and direct families to appropriate specialty providers as needed. Close follow-up by the primary care provider is particularly important because children with ASD have decreased access to care for various reasons. (See 'Role of the primary care provider' above.)

ACKNOWLEDGMENT — The UpToDate editorial staff acknowledges Carolyn Bridgemohan, MD (deceased), who contributed to an earlier version of this topic review.