Updated Autism Guidelines: Emphasizing Early Intervention and Comprehensive Care

As a mental health expert with over 30 years of experience, I prioritize staying informed about the latest developments in pediatric mental health. That means reading research daily on issues affecting the mental and physical health of children. With autism on the rise, I especially make sure to stay informed of the needs of children with autism and their families. 

On December 16, 2019, the American Academy of Pediatrics (AAP) updated its Autism guidelines for the first time in 12 years. During those twelve years, the rates of autism skyrocketed. Today, one in 36 children have autism. 

The American Psychiatric Association plays a crucial role in updating the DSM-5, which is essential for diagnosing autism spectrum disorder. Their involvement can lead to quicker diagnoses and ensure that children receive the necessary interventions promptly. 

The AAP paper, titled “Identification, Evaluation, and Management of Children with Autism Spectrum Disorder,” recommends focusing on early screening and intervention.

Along with pediatricians, the report says parents play a big role in identifying and reporting early signs so children with Autism can get diagnosed quicker and get those necessary early interventions.

What is Autism Spectrum Disorder?

Autism is a developmental disorder characterized by challenges with social skills, repetitive behaviors, speech, and nonverbal communication. The diagnosis of Autism Spectrum Disorder (ASD) is based on identifying observed and reported behaviorally defined clinical symptoms.

Early screening for developmental disorders, including autism spectrum disorder and attention deficit hyperactivity disorder (ADHD), is crucial. Identifying these conditions early allows for timely intervention and support.

Many children with ASD also have co-occurring conditions, such as sleep disorders, seizures, attention deficit hyperactivity disorder (ADHD), OCD, behavioral problems, mood issues, etc. According to the report, “Co-occurring conditions are common in children with ASD and may have great effects on child and family functioning and clinical management”.

Key Updates on AAP Autism Guidelines

The new AAP guidelines place a strong emphasis on early screening and intervention. The updated autism diagnostic criteria in the DSM-5 and ICD-11 include significant changes, such as the inclusion of sensory differences and co-occurring mental health disorders. Recognizing clinically significant impairment is crucial in diagnosing autism, as these symptoms can significantly obstruct social, occupational, or other crucial areas of life.

Universal Screening

AAP recommends screening for ASD during well-child visits at 18 and 24 months. This is because early diagnosis and intervention can significantly improve outcomes for children with ASD. Common screening tools, like the Modified Checklist for Autism in Toddlers (M-CHAT), are advised for this purpose.

Diagnostic Testing and Criteria

After an autism diagnosis, the role of the diagnostic and statistical manual is crucial in guiding clinicians through the diagnostic process. Additional tests like chromosomal microarray and fragile X testing are recommended to help provide genetic counseling and predict the child’s prognosis. These tests can detect genetic abnormalities, helping families better understand the condition and plan for care.

Early Intervention

The guidelines continue to stress that early intervention, particularly using therapies such as Applied Behavior Analysis (ABA), can improve cognitive skills, language, and behavior, especially if started at a young age.

Comorbidities

ASD is often associated with other health issues, including seizures, gastrointestinal problems, and sleep disturbances. It is important to distinguish between intellectual developmental disorder and autism spectrum disorder to ensure accurate diagnosis and treatment. The AAP guidelines recommend addressing these comorbidities through comprehensive care that might involve occupational therapy, speech therapy, and specialized medical evaluations for co-occurring mental disorders.

Safety Concerns and Sensory Aspects

Wandering and increased risk of suicide are highlighted as major safety issues for children with ASD, and the guidelines recommend measures to ensure the safety and well-being of these children.

Continued Monitoring

Pediatricians should continue screening children as they grow older, especially when language and social demands increase in school. This ongoing surveillance can help identify cases that might be missed in early childhood. Monitoring nonverbal communicative behaviors is crucial as part of this ongoing surveillance to ensure comprehensive assessment and early intervention.

Here are some additional notes:

• The pediatric health care provider is a resource for information and should collaborate with families.
• That children should be formally and regularly screened for Autism as early as possible.
• Conduct developmental and behavioral observations during all well visits with children, developmental screening at the 9-, 18-, and 30-month visits, and standardized screening of patients for Autism spectrum disorder (ASD) at 18 and 24 months old.
• Girls may have lesser intensity of symptoms and fewer externalizing behaviors and, therefore, may be underdiagnosed.
• When developmental concerns are identified, pediatricians should refer children to early intervention (0-3 years of age) or school services to initiate services.
• Constipation is common in Autism.
• Pediatricians often see young children with severe food selectivity and sleep problems who are later diagnosed with ASD.
• Individuals with ASD are at increased risk for seizures.
• Almost 16% of young children with ASD have a head circumference greater than the 97th percentile.
• Intervention for children either diagnosed with Autism or even before a formal diagnosis, if they are at-risk, should start as soon as possible.
• The research shows that the earlier intervention begins, the better their outcomes as they get older.
• There needs to be better identification of co-occurring health conditions now associated with ASD, including ADHD, OCD, anxiety and sleep and intestinal disorders, seizures, etc.
• That families should consider performing genetic testing that may help better understand the type of Autism a child has, which could affect what type of interventions the child is provided.
• Children with ASD need evidence-based services to address social, academic, and behavioral needs at home and school, with access to appropriate pediatric and mental health care, respite services, and leisure activities. There is a need for a combination of developmental and behavioral approaches, as well as parent-mediated therapies.
• At school age, social skills should be addressed through pragmatic language therapy, teaching play, and interaction with peers.
• Wandering is a major behavioral and health risk issue and should be addressed through anticipatory guidance throughout the lifespan.
• Addressing GI and feeding issues is important.
• Families should be supported to work on transitions to post-secondary education, work, and adult health providers.
• Pediatricians need to inform patients and families about the evidence for interventions and give referrals to organizations and providers that can see these children quickly.

Increasing Autism Rates 

About 1 in 36 children (CDC, 2023) have been identified with Autism Spectrum Disorder (ASD), according to estimates from the CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network.

Individuals previously diagnosed with pervasive developmental disorder not otherwise specified are now reclassified under the autism spectrum disorder diagnosis, reflecting the evolution of diagnostic criteria and the importance of accurate assessment.

The AAP report notes that the current rate of children diagnosed with Autism has risen dramatically in recent decades to about 1.7 percent of the population.

The CDC indicates that ASD is reported to occur in all racial, ethnic, and socioeconomic groups and that it is about four times more common among boys than among girls. ASD is an international problem and studies in Asia, Europe, and North America have identified individuals with ASD with an average prevalence of between 1% and 2%.

Why the Increase In Autism?

The AAP report denotes that “In the years since 2007, reported prevalence rates of children with ASD have increased, understanding of potential risk factors has expanded, awareness of co-occurring medical and behavioral conditions and genetic contribution to etiology has improved, and the body of research supporting evidence-based interventions has grown substantially,”.

The impact of genetic mutations and genetics in Autism has become increasingly known. “Understanding of gene-environment interaction and research into potential immunologic factors that affect brain development are increasing.” So, it just isn’t genetics alone but rather the interaction between genetics and gene mutations with a variety of environmental factors, including environmental toxins.

The DSM-5 has redefined autism spectrum disorder to include sensory aspects as a key symptom, emphasizing the importance of recognizing hyper or hypo-reactivity to sensory input.

There are also prenatal influences, including certain medications, and having an older mother or father is linked to a greater risk of ASD.

Notably, because fragile X syndrome increases the risk for ASD, DNA testing for fragile X syndrome is recommended for all children with ASD.

The report recommends that families should consider performing genetic testing that may help better understand the type of Autism a child has, which could affect what type of interventions the child is provided.

Prognosis of Autism

The prognosis and development of a child with Autism can't be predicted at this time according to the AAP guidelines. Some interesting findings were reported with regard to outcomes.

• Young children with ASD with language impairment appear to have more social difficulty than do children with ASD without language impairment
• Children with ASD and intellectual disability have the most difficulty developing social skills
• Executive function difficulties are associated with poorer adaptive outcomes, independent of IQ
• Approximately 9% of children who are diagnosed with ASD in early childhood may not meet diagnostic criteria for ASD by young adulthood

Youth who no longer meet the criteria for ASD are more likely to have a history of:

☐ Higher cognitive skills at 2 years of age

☐ Higher verbal IQ scores

☐ Participated in earlier intervention services

☐ Demonstrated a decrease in their repetitive behaviors over time

Understanding Autism Testing Across Ages

An autism test helps identify whether someone may be on the autism spectrum, and there are various kinds of tests available depending on the individual’s age. These tests assess behaviors and social skills, but they are tailored to different developmental stages.

It is crucial to assess social interaction as part of the diagnostic criteria for autism spectrum disorder, as persistent deficits in social communication and social interaction are key aspects of the diagnosis.

There are multiple types of autism spectrum tests used to diagnose individuals, including:

• Screening Questionnaires: These are typically used during routine pediatric visits. Examples include the Modified Checklist for Autism in Toddlers (M-CHAT), which assesses early signs in children.
  
  
• Behavioral Observations: Tools like the Autism Diagnostic Observation Schedule (ADOS) involve structured play and interaction to observe behaviors.
  
  
• Parent/Caregiver Interviews: Tools like the Autism Diagnostic Interview-Revised (ADI-R) rely on gathering detailed information about the child’s early developmental history.

Autism Testing for Children

For younger children, autism testing is focused on identifying developmental milestones and behaviors that indicate social, communication, and sensory differences. Tools like the ADOS-2 (Autism Diagnostic Observation Schedule, Second Edition) are often used to observe how children interact with others in a structured setting. Additionally, parent questionnaires such as the M-CHAT (Modified Checklist for Autism in Toddlers) provide insights into the child’s development and help guide clinicians in diagnosing autism. The goal is to detect early signs so that intervention can begin as soon as possible, supporting a child’s growth in key areas like communication and social skills.

Autism Test for Teens

Teens may undergo a specialized autism test for teens designed to capture the unique challenges of adolescence, such as navigating more complex social dynamics and academic pressures. Tests often used in this age group include the ADOS-2 (an updated version of ADOS) and self-report questionnaires, where teens reflect on their own experiences alongside direct observations and interviews with parents.

Autism Test for Adults

Diagnosing autism in adults can be different, as symptoms might be more subtle or manifest differently than in children. An autism test for adults typically involves tools like the Adult Asperger Assessment (AAA) or the Autism Spectrum Quotient (AQ), both of which help assess social difficulties, repetitive behaviors, and other common traits. Often, adults will also engage in clinical interviews that explore their developmental history, current behaviors, and challenges.

No matter the age, the goal of an autism spectrum test is to provide a comprehensive understanding of an individual’s behaviors and challenges, helping to ensure they receive the support and intervention they need.

Treatments That Help Autism

The AAP's autism treatment guidelines recommend that interventions for children either diagnosed with Autism or even before a formal diagnosis if they are at-risk, should start as soon as possible. The research clearly shows that the earlier intervention begins, the better the outcomes for children with ASD as they get older.

The AAP report states, “Treatments should be individualized, developmentally appropriate, and intensive, with performance data relevant to treatment goals to evaluate and adjust intervention.” It suggests that applied behavior analysis (ABA), developmental approaches, and/or naturalistic approaches should be used. 

Parents are critical in their child's treatment program. “Increasing evidence reveals that focused interventions delivered by trained parents or other caregivers can be an important part of a therapeutic program”. They are especially important in reinforcing social skill interventions. Teaching social skills increases a child’s knowledge of the cues for social behavior and strategies for social problem-solving, and these skills result in improved life outcomes.

The report notes that between 28% and 74% of children with ASD are given at least one (and often more) complementary therapy. Complementary therapies can be useful, and parents often try to adjust diets to reduce behaviors and symptoms. There are several therapies that can be useful.

Since sleep is such an issue for children with ASD, it is important to note that melatonin has been demonstrated to be a safe and effective intervention. Magnesium is another supplement that can help with better sleep. 

There are many treatments, and the AAP suggests using evidence-based therapies. The AAP suggests that the goals of all Autism treatments should:

• Minimize core deficits 
• Improve social communication and interaction
• Reduce restricted or repetitive behaviors and interests
• Reduce co-occurring associated impairments
• Maximize functional independence by facilitating learning and acquisition of adaptive skills
• Eliminate, minimize, or prevent problem behaviors that may interfere with functional skills

Evidence-Based Therapies for Children with Autism