There has been an increased focus in the last 10 years on autism spectrum disorder (ASD), and with good reason. According to a recent study published in the well-respected online journal JAMA Network Open, the number of children and adults diagnosed with ASD has increased by 175% over a decade. A March 2023 study published by the Centers for Disease Control (CDC) breaks that number down even further, saying 1 in 36 children were diagnosed with ASD in 2020. Data also shows the prevalence is highest among children ages 5 to 8, reaching 30.3 per 1,000 children in 2022.
While these statistics indicate that autism is on the rise, experts suggest that the increase may be attributed to heightened awareness and improved screening tools. This is good news because the sooner autism is diagnosed, the quicker a child can be linked to services and therapies that can address developmental delays and other likely social and behavioral barriers that accompany the condition. However, there is no generally accepted age at which experts agree a child should be tested for autism. While a child as young as 18 months can be evaluated, some behavioral health experts prefer to wait until a child is 2 to 3 years of age, or once language and other adaptive skills improve.
When is it time to have my child evaluated for autism?
For parents, the timing of the decision to test a child for autism can be highly variable. Some may have observed behaviors or developmental delays that seemed somewhat atypical over a period of time. Or there can be a sentinel event that is so out of place from a child’s normal age-appropriate behavior, it underscores the urgency of an evaluation. I have found that in younger children, it is often teachers, coaches, medical providers or other therapists who may urge a parent to have their child assessed. I am seeing more parents bringing in older children because of their child’s preferred social isolation, particular beliefs, and perceived changed or odd behaviors. “High-masking” behavior, particularly in girls, can make autism harder to detect until later, when social demands increase, typically around the 4th or 5th grade. If you are at a point where you feel your child should be assessed, here are some of the typical measures used during an evaluation, although this is not a complete list. It should be noted that with these measures, adaptive or other types of questionnaires may also be included:
- Autism Diagnostic Observation Schedule – Second Edition (ADOS-2)
The ADOS-2 is a semi-structured assessment that can be used to evaluate individuals presenting with autism or autism spectrum disorder-like symptoms from toddlers to adults. It has been validated for verbal and nonverbal children to adults. There are five modules that can be used depending on age and language skills. The conclusion of this screening tool is what insurances, schools and therapy agencies look for to verify the diagnosis and meet the criteria for ASD or to approve services.
- Autism Diagnostic Interview-Revised (ADI-R)
The ADI-R is a structured interview with parents/caregivers/guardians regarding social interactions, communication, and restricted repetitive or stereotyped patterns of behaviors of the patient. It asks parents specific chronological questions in order to determine onset and quality of presentation with regard to development and possible signs of autism.
- Childhood Autism Rating Scale – Second Edition (CARS-2)
This measure pertains to typical autism spectrum disorder symptoms, typically filled out with the help of a primary caregiver.
- Gilliam Autism Rating Scale – Third Edition (GARS-3)
This screening measure is used for individuals aged 3 to 22 to assess likely symptoms associated with ASD.
An accurate diagnosis can take time, and it is important to note that other factors can lead to behaviors that mimic autism, such as specific genetic disorders, Fetal Alcohol Spectrum Disorders, and a mixture of sensory, speech and attention difficulties that may converge into what could look like autism. Furthermore, sleeping difficulties can make a child slower to respond to verbal communication. A hearing impairment can lead to delayed speech and poor attention or back-and-forth engagement. Children with separation anxiety can be more difficult to assess and may require additional visits. As a result, behavioral health therapists often recommend other screenings that can reveal conditions that cause ASD-like symptoms.
The Journey to Autism Acceptance
Just as every child is different, so can parents vary in their reaction upon learning the news of their child’s ASD diagnosis. There are parents who express relief after confirmation of an autism diagnosis, knowing that they can receive additional support. It is not uncommon, however, for parents to feel guilt, thinking they should have had their child evaluated sooner or feel they “caused” their child’s autism if they carry a genetic marker or made certain lifestyle decisions during pregnancy. Moms and dads may also have fearful thoughts, such as “Will my child ever be able to live alone?” I have found that parents just learning about their child’s diagnosis often experience some stages of grief: denial, anger, depression and acceptance. Trying to place blame is not helpful. But talking with others---therapists, health care professionals, social service workers, teachers, and other parents who have been through this diagnosis with their child—is extremely beneficial in moving forward.
Getting Help for Your Autistic Child
It is important to remember that linking your child to the services he or she needs after diagnosis is essential for success now and into the future. Applied behavior analysis (ABA) is one form of therapy based on the principles of learning and behavior that aims to increase positive behaviors and decrease those that are harmful or interfere with learning. ABA is a science-based approach often used to teach skills and reduce challenging behaviors, particularly in individuals with autism and other developmental disabilities. There are various agencies that provide behavioral support, whether in the form of ABA or other modalities such as AIM-HI or cognitive behavioral therapy. It is important for parents to understand the type of therapy, demands on the family, length of time and possible outcomes.
A good resource for parents of autistic children is the Department of Developmental Services. This agency oversees the coordination and delivery of services for Californians with developmental disabilities through a statewide network of 21 community-based, non-profit agencies known as regional centers. Regional centers provide assessments, determine eligibility for services, and offer case management services.
An excellent resource for helping parents prioritize their next steps can be found on the Autism Speaks website. The Parent’s Guide to Autism was developed as part of Autism Speaks’ series of Family Support Tool Kits to assist you and promote a positive future for your child and family. The website also offers useful information and guides to help people with autism throughout their lifespan, whether or not someone agrees with specific methods. Information is key to making informed decisions that will positively shape your child’s future, including their well-being, success and happiness.
Remember, the more you advocate for your child and the services he or she needs for developing into a healthy and productive adult, the better equipped they will be when advocating for themselves as an adult. An autism diagnosis does not change children or the love their parents have for them. It presents an opportunity for parents to help them become the adults they were always meant to be, to find their voice, their niche, their strengths, and to have similar choices in life as their peers.
About Dr. Pal
Ioana Pal, Psy.D. is a licensed clinical psychologist at Stramski Children’s Development Center at Miller Children’s & Women’s Hospital (MCWH) in Long Beach, CA, who specializes in psychological, developmental and neuropsychological assessments.
Her clinical interests include dual diagnosis, forensic psychology, personality disorders, mind-body connection, motivational interviewing, mindfulness and dialectical behavior therapy (DBT) with children, adolescents and adolescent young adults (AYA).
She holds master’s degrees in mental health counseling and forensic sciences and received her doctorate degree in clinical psychology with a concentration in forensic psychology from the American School of Professional Psychology at Argosy University. She completed her post-doctoral fellowship training at the Orangewood Children & Family Center (OCFC), County of Orange Health Care Agency.