In the September blog post titled “More Than Words”, I introduced the key social communication milestones that infants and toddlers should be exhibiting between 9-16 months. I also shared that if a child is delayed in acquiring these social communication milestones, they may be at risk for developmental delays, including autism spectrum disorder (ASD). But what is autism or ASD? What symptoms or behaviors should you be looking for? What do you do if you have concerns? And why does it even matter? Read on to learn more…
What is ASD?
Autism Spectrum Disorder (ASD) is a brain-based, developmental disorder that affects an individual’s ability to relate and socialize with others and to effectively communicate verbally and nonverbally. It is also accompanied by restricted, repetitive patterns of behavior, interests or activities. Symptoms of ASD are typically evident in early childhood, before age three, and it is considered a lifelong diagnosis. However, with appropriate early intervention, many children with ASD do well in school, participate in various activities that they enjoy, and go on to lead productive, inclusive, and fulfilling lives.
What are the signs and symptoms?
Many people recognize some of the more overt, stereotypical behaviors associated with ASD, such as hand flapping or rocking, but when observing young children who may be at risk of ASD, the focus is more often on what they are NOT doing compared to typically developing children, or even those with other developmental delays, versus what behaviors they are exhibiting. Symptoms or behaviors associated with ASD are grouped into two domains: Social Communication/Social Interaction, and Restricted, Repetitive Patterns of Behavior.
Social Communication and Social Interaction
- Limited use of gestures such as giving, showing, waving, clapping, pointing, or nodding their head
- Delayed speech or no social babbling/chatting
- Makes odd sounds or has an unusual tone of voice
- Difficulty using eye contact, gestures, and sounds or words all at the same time
- Little or no pretending or imitating of other people
- Stopped using words that they used to say
- Uses another person’s hand as a tool (e.g., putting parent’s hand on a jar for them to open the lid)
- Does not look right at people or hard to get them to look at you
- Does not share warm, joyful expressions
- Does not respond when someone calls their name
- Does not draw your attention to things or show you things they’re interested in
- Does not share enjoyment or interests with others
Repetitive Behaviors & Restricted Interests
- Unusual ways of moving their hands, fingers, or whole body
- Develops rituals such as lining objects up or repeating things over and over
- Very focused on or attached to unusual kinds of objects such as strips of cloth, wooden spoons, rocks, vents, or doorstops
- Excessive interest in particular objects, actions, or activities that interferes with social interaction
- Unusual sensory interests such as sniffing objects or looking out of the corner of their eye
- Over- or under-reaction to certain sounds, textures, or other sensory input
What to do if you have concerns?
The American Academy of Pediatrics recommends that all children be screened for ASD at 18 and 24 months of age. But often these screenings are either not being completed, or folks are employing the “wait and see if they grow out of it” mindset. This approach can be detrimental to a child’s development and lead to lifelong challenges.
If you note any of the above red flag behaviors in your child or a child you serve, consider referring them to a diagnostic professional right away. An experienced professional can make a diagnosis of ASD as early as 18 to 24 months of age; but often ASD is not diagnosed until at least 5 years of age or later, after the window of opportunity for very early intervention.
Why is getting an evaluation for ASD important?
Early diagnosis is critical because the core deficits of ASD – such as deficits in social communication and interaction, restrictive and/or repetitive behaviors or interests – can interfere with a child’s ability to access learning opportunities which may lead to a cascading effect on development. In toddlers we often see an unfolding of symptoms of autism. At 12 months the red flags may be subtle and easy to miss. A toddler may just appear to be quiet and minimally engaged with others in his environment. But because he is not engaged and not paying attention to important information in the learning environment, he may begin to exhibit increasing deficits in social communication and brain development. So that by 2 years of age, he is exhibiting a lot more obvious signs of ASD such as delayed language, limited nonverbal communication, lack of social reciprocity, and repetitive behaviors.
Where to go for help?
If you have concerns for a child you know, there are a number of resources and services available:
- Autism Navigator®: The Autism Navigator® website offers a wealth of resources and information for families and providers. Autism Navigator® is a unique collection of web-based tools and courses designed to increase the capacity of healthcare providers, early intervention providers, educators, and families to improve outcomes of young children with ASD. Their web-based platform utilizes extensive video footage to illustrate effective evidence-based practice. The video clips come from the unparalleled library of video footage collected from federally-funded research projects at the Autism Institute at Florida State University and collaborators at First Signs and the Autism Neighborhood. If a picture is worth a thousand words, imagine what a video is worth. To get started, click on the “Find My Way” Button (see highlighted tab in picture) at the top the webpage. Website: autismnavigator.com
- Learn the Signs. Act Early.: CDC’s “Learn the Signs. Act Early.” program encourages parents and providers to learn the signs of healthy development, monitor every child’s early development, and take action when there is a concern. The program offers free checklists and other tools to make developmental monitoring practical and easy. They also provide video clips demonstrating various milestones (including language and social-emotional milestones) and have a mobile app available as well called the Milestone Tracker App. They also provide a section for early care providers with tips on how to talk with parents about their child’s development. Website: https://www.cdc.gov/ncbddd/actearly/index.html
- FIRST WORDS® Project: This website offers a wide array of resources and information, including the 16 by 16 series, which demonstrate early social communication milestones via pictures in their “Lookbooks”. They also offer families of children ages 9-18 months the opportunity to receive a free screening to look at social communication milestones and identify risk for ASD. Website: http://firstwordsproject.com/
- Regional Autism Assistance Program (RAP): The Iowa Regional Autism Assistance Program (RAP), affiliated with Child Health Specialty Clinics (CHSC), provides community-based clinical consultation, multidisciplinary care planning recommendations, and family to family support for children with Autism Spectrum Disorder (ASD) and their families.
- RAP team members who work with families include advanced registered nurse practitioners, registered nurses and family navigators.
- They use standardized tools to identify children at risk for ASD and help families find diagnostic services.
- RAP team members help families access community-based services and supports to help meet their needs and goals.
- RAP also provides technical assistance and training on evidence-based screening and assessment tools to medical home providers, Area Education Agencies, and other early intervention community providers. Click here to download the RAP Referral Form. Website: https://chsciowa.org/regional-autism-assistance-program.asp
If a child is exhibiting red flags for ASD, or if you think there could be a problem with a child’s development, I urge you to talk with the child’s parents and share your concerns. Don’t wait. Encourage them to talk with their doctor or contact their Area Education Agency (AEA) and pursue early evaluation and intervention. For children younger than three years old, referrals to Early ACCESS can be submitted via the website here. For children three years and older, visit the AEA website here. This sensitive time of brain development is too important to take the “wait and see” approach. We need to change our thinking to “let’s just see” and evaluate any child who might be falling behind so that they can benefit from additional support if needed. We need to ensure that our infants and toddlers have a strong start in life and the support they need to reach their maximum potential.
Do your part. #Let’sJustSee
autism spectrum disorder