According to a 2020 report from the Centers for Disease Control and Prevention’s (CDC) Autism and Developmental Disabilities Monitoring Network, autism spectrum disorder, or ASD, affects approximately 1 in every 54 children in the United States — 1 in 37 boys and 1 in 151 girls. ASD is a neurodevelopmental disorder that impacts development and daily functioning in two main areas:
- Social communication and social interaction including skills deficits in:
- Having reciprocal social interactions, including sharing information about own self-interests, ideas and feelings with others, as well as displaying interest and understanding of the same experiences in other people
- Developing and keeping developmentally appropriate relationships through understanding of social norms and rules, as well as by using a range of verbal and nonverbal communication skills (such as facial expressions, gestures, eye contact and body language)
- Behaviors, interests and activities including:
- Intense focus and preoccupation with routines or rituals and very specific interests and preferences
- Exaggerated or otherwise atypical patterns of responses to sensory aspects of their environment (such as excessive interest in or unusual aversion to sounds, smells, textures, pain, etc.)
- Repetitive or otherwise unusual motor behavior
Due to infinite possible combinations of skill deficits and behavioral patterns, individuals with ASD comprise an extremely heterogeneous group, which is summarized in a famous quote:
“If you’ve met one person with autism, you’ve met one person with autism.” – Dr. Stephen Shore
Screening and diagnosis of ASD
Trained healthcare professionals can reliably diagnose autism spectrum disorder in children as young as age 2, although most are not diagnosed until after age 4. Screening and diagnosis of ASD has progressed significantly in recent decades, particularly through the efforts of the CDC and the American Academy of Pediatrics (AAP). Freely available tools like the Modified Assessment for Autism in Toddlers (M-CHAT) help providers and caregivers identify young children who may benefit from more thorough evaluation. Diagnosis often involves use of well-researched tools like the Autism Diagnostic Observation Schedule (2nd Ed; ADOS-2), the results of which must be considered along with other important information obtained through additional symptom-focused questionnaires and developmental interviews that are conducted by trained professionals.
Resources made available to pediatricians and families through the AAP’s Autism Initiatives can increase the awareness and developmental monitoring that is critical to improving outcomes for youth with ASD. And when a diagnosis of ASD is made, the toolkits available through Autism Speaks (search “toolkits”) can be a helpful resource for families.
Despite advancements in detection of ASD overall, there are still disparities in the rate of recognition and diagnosis in ethnic and racial minorities, as well as in females, which results in missed and delayed diagnoses for individuals in these groups. Additionally, an inaccurate diagnosis can delay access to appropriate care (such as females who are labeled as having “borderline personality” problems or minorities labeled with conduct or “severe emotional” disorders).
Associated concerns in ASD
- Executive functioning abilities: In addition to the two core diagnostic criteria, ASD is also known to impact an individual’s executive functioning abilities, which may be displayed as difficulties in planning, initiating, organizing and self-monitoring their behavior in order to reach goals. Children may also have difficulties controlling their behavior through impulse control and flexible thinking and behavior, such as accepting and shifting between ideas and activities to fit different situations.
- Co-occurring mental health concerns: By late childhood and adolescence, the majority of youth with ASD will also experience a co-occurring mental health concern, often an anxiety disorder (high fear and avoidance behavior), a mood disturbance (like depression or extreme mood swings), or a disturbance in conduct (such as hyperactivity, problems with attention and focus, “oppositional” behaviors, aggression or self-directed harm). These co-occurring concerns can both reflect and interact with core social communication deficits (like difficulty understanding, labeling and describing emotions) and behavioral differences (such as difficulty regulating reactions to fit social norms), which results in under-recognition and lack of appropriate treatment for their mental health concerns.
- Medical conditions: Understanding the behavioral difficulties and skill deficits in ASD is often further complicated by numerous medical conditions that are often observed in these individuals, like neurological conditions, chronic gastrointestinal issues and sleep problems, some of which may be related to other genetic syndromes that are associated with ASD characteristics (e.g., tuberous sclerosis, Fragile X, Cornelia de Lange, and Down, Angelman and Williams syndromes).
- Intellectual disability: About one-third of individuals with ASD also have an intellectual disability that can impact prognosis for treatment outcomes depending on the degree of cognitive and adaptive skill impairment.
Evidence-based treatments for ASD are summarized in the National Autism Center’s National Standards Project Phase 2 Report (2015). Of the interventions with the most support are behavioral interventions (such as those using interventions based in applied behavior analysis, or ABA) and other interventions that focus specifically on building skills in core deficit areas (such as language, social skill and self-management training).
Due to the vastness of pseudoscientific, ineffective and potentially even harmful proposed “treatments” for ASD that have been circulated, it is critical that practitioners guide families in making evidence-based decisions when seeking care. Reliable information available through organizations like the Association for Science in Autism Treatment are recommended, such as the article Making Sense of Autism Treatment: Weighing the Evidence.
For individuals with ASD and co-occurring mental health conditions, modified cognitive behavioral interventions are also recognized as evidence-based interventions for improving understanding of emotions, emotional expression and self-monitoring of behavioral responses. Psychiatric medication management is also recommended for helping youth with ASD who may be experiencing functionally impairing levels of emotional and behavioral difficulties.
Involving caregivers in treatment for youth with ASD using coordinated skills training and coaching is critical for the maintenance of skills over time as well as generalization of skills across settings, which is accomplished through practice and rehearsal.
Finally, improving outcomes for youth with ASD also involves significant care coordination among the numerous providers involved in their care, including physicians (primary care and specialists), therapists (behavioral, speech-language, occupational, mental health, etc.) and education teams.
Autism spectrum disorder resources at Children’s Hospital Colorado
We provide several services for children with ASD, including evaluations and therapies.
Additionally, our Pediatric Mental Health Institute offers services for youth with ASD and co-occurring mental health concerns such as difficulties regulating emotions and behavior. This includes:
For more information, visit our website or call 720-777-6200.
Additional autism spectrum disorder resources