It’s very likely that you or someone you know have expressed concerns about your child reaching developmental milestones only to be told to “wait and see” or “they’ll probably grow out of it.” While children develop at their own pace and some do catch up without formal intervention, this misguided advice comes with risks. This blog is intended to equip you with the knowledge to advocate for your child to help them reach their fullest potential. Information will be provided on the prevalence of autism spectrum disorder (ASD), signs and symptoms to be aware of, early intervention process and outcomes, and what to do if you suspect your child may have a developmental delay.
According to estimates from the Centers for Disease Control and Prevention’s (CDC) Autism and Developmental Disabilities Monitoring (ADDM) Network in 2018, approximately 1 in 44 children have been identified with autism spectrum disorder (ASD), which is a drastic increase from 2002 when it was reported in 1 in 150 children. Boys are four times more likely to receive an ASD diagnosis than girls. ASD is prevalent across all racial, ethnic, and socioeconomic groups. 85% of children eventually diagnosed with ASD had concerns regarding their development documented in their medical records by 36 months old; however, only 42% of children received an evaluation by 36 months of age. Furthermore, 30% of children received an ASD diagnosis after age 8, which limited the services accessible to them. The average age of ASD diagnosis is 4 years and 4 months and has been getting lower as the years progress.
Who should be screened and when?
The American Academy of Pediatrics (AAP) recommends that all children are screened by their pediatrician specifically for ASD during their well-child visits at 18 and 24 months old. The AAP also recommends developmental and behavioral screening for all children at their well-child visits at 9, 18, and 30 months old. Additional screening is recommended if the child has a sibling or other family member diagnosed with ASD or exhibits any behaviors associated with ASD (e.g., avoiding eye contact, lining up toys, repeating words or phrases, rigidity with routines, flapping hands, rocking body, spinning in circles, etc.). Developmental pediatricians, neurologists, psychiatrists, and psychologists are typically qualified to evaluate children for ASD and rule out other medical conditions and identify other genetic or neurological issues that may co-occur with ASD. If your child’s pediatrician does not conduct comprehensive ASD evaluations, such as the Autism Diagnostic Observation Schedule (ADOS), they can provide you with a referral to another physician who performs testing.
What are the benefits to being evaluated for a potential diagnosis?
Often, parents may be hesitant to have their children evaluated for ASD out of fear of “putting a label on them.” Although a diagnosis of any kind is not necessary to benefit from Applied Behavior Analysis (ABA) therapy, which is the gold standard evidence-based treatment for ASD symptoms, an official ASD (F84.0) diagnosis is required by insurance companies to cover the costs of ABA therapy, so forgoing an evaluation may limit children’s access to medically necessary services.
Aside from access to therapy from providers, having a diagnosis will aid your child in qualifying for free services and accommodations provided by the public school system through an Individualized Education Plan (IEP). An additional barrier is the likelihood of lengthy waitlists for evaluations and subsequent therapy. It’s not uncommon to experience a delay of 6-12 months. Rather than the “wait and see” approach, it’s most advantageous to schedule an evaluation if you have any concerns and then cancel the appointment if you feel the concerns have been resolved by time the date approaches.
If your child is evaluated for ASD and ultimately does not receive a diagnosis, the physician may discover or suspect another diagnosis and/or should provide you with information on services that would be beneficial for your child’s needs.
What are some signs to speak to your pediatrician about?
The answer to this question mostly depends on the age of your child. The CDC has free resources available to track developmental milestones across various ages, starting as young as 2 months old. There are checklists available as well as a free phone app titled “Milestone Tracker,” available for both Apple and Android, for easy reference.
Pre-diagnostic markers emerge as early as 2 months through 18 months of age and become more reliable as the child reaches 12 months old (Chawarska et al., 2014). Early markers that indicate a potential need for early intervention include atypical eye gaze, decreased eye contact, reduced social smiles, low joint attention skills, and decreased object exploration and anticipatory response (Elsabbagh et al., 2015; Garon et al., 2016; Lambert-Brown et al., 2015; Macari, Koller, Campbell, & Chawarksa, 2017; Osterling, Dawson, & Munson, 2002; Ozonoff et al., 2018).
More generally speaking, it’s important to notify your doctor if your child demonstrates any atypical behavior or if your child has shown regression by losing skills that they once had. Having special healthcare needs or being born prematurely are also risk factors to be aware of.
What is early intervention? What does it look like? What to expect?
Early intervention refers to the services and supports that are provided to babies and toddlers with developmental delays and their caregivers. While the specific services will depend on each child’s unique needs, commonly provided services include speech therapy, occupational therapy, physical therapy, and ABA therapy. Early intervention services are provided with a naturalistic approach, include parent involvement, and capitalize on the child’s motivation and interests. Some of the key objectives focus on joint attention skills, social interactions, and communication.
Who provides early intervention services?
Every state and territory in the U.S. has early intervention programs available to children who qualify. The services are publicly funded and at no cost to the families. A doctor’s referral is not required to seek services. In Florida, Early Steps is the state’s early intervention program for infants and toddlers from birth through 36 months old. Services are typically provided once per week in home and involve the family.
In addition to the state funded programs, you may choose to enroll your child in other therapies with private providers (e.g., speech, OT, ABA, etc.) to benefit from more therapy time as research has shown that increased hours of therapy and duration of treatment are associated with greater progress (Eldevik et al., 2010). Often, speech therapy, occupational therapy, and physical therapy sessions are 30-60 minutes once per week. In contrast, ABA therapy is available up to 40 hours per week, with the recommended hours varying depending on the specific needs of each child. Private services are provided either in the child’s home or in a pediatric clinic. These services are funded by private insurance, state provided insurance (e.g., Medicaid or Children’s Medical Services), or privately if the child doesn’t have an insurance policy that covers the services. Like any medical services, therapies can get pricy, but there are opportunities for scholarships and grants that families are encouraged to take advantage of.
When reviewing the literature on early intervention, Hampton and Kaiser (2016) determined that the greatest improvements in vocal language occurred for the children who received both parent- and clinician-delivered intervention, as opposed to those who only received one modality. In another study, Roberts et al. (2011) found that children who received the combination of parent- and clinician-delivered intervention demonstrated better social communication outcomes and the parents reported having a better quality of life and sense of competence. In summary, these studies suggest that combining both parent- and clinician-delivered interventions tend to show the best outcomes by providing children with an environment in which skills are continuously taught and reinforced.
What is the impact of early intervention? Why start early?
From birth through 36 months, the brain goes through the most significant development period (Courchesne & Pierce, 2005). It is critical to begin intervention while the connections in the brain are still being formed rather than attempting to change them once they’re already established to take advantage of neuroplasticity, therefore maximizing the effects of intervention (Pierce et al., 2016).
In a study conducted by MacDonald et al. (2014), the children who began intervention prior to 24 months old were 60% more likely to show significant progress during their first year of intervention than the children who began intervention after 30 months old. With only a difference of about 6 months, this signifies that every month counts.
A Randomized Control Trial (RCT) examining 54 infants who were identified by 9 months of age and completed pre-diagnostic treatment by 15 months found that the severity of autism symptoms were decreased by the time the children reached 39 months of age (Green et al., 2017).
Summary
Early detection and intervention can mitigate ASD symptoms prior to the full onset of symptoms and confirmation of diagnosis. To support early detection and intervention, it is crucial to utilize early screening tools. As the parent, you know your child better than anyone else and only want what’s best for them, so if you have noticed any markers or delays, or even just feel that something might be “off,” address them with your child’s pediatrician. If you feel your concerns have been dismissed, continue to advocate for your child because while there is no downside to being evaluated early, the downside to waiting is significant.
References
American Academy of Pediatrics. (2022, November 14). Developmental surveillance and screening patient care overview. Developmental Surveillance and Screening Patient Care. Retrieved February 17, 2023, from https://www.aap.org/en/patient-care/developmental-surveillance-and-screening-patient-care/
Chawarska, K., Shic, F., Macari, S., Campbell, D. J., Brian, J., Landa, R., Hutman, T., Nelson, C. A., Ozonoff, S., Tager-Flusberg, H., Young, G. S., Zwaigenbaum, L., Cohen, I. L., Charman, T., Messinger, D. S., Klin, A., Johnson, S., & Bryson, S. (2014). 18-month predictors of later outcomes in younger siblings of children with autism spectrum disorder: a baby siblings research consortium study. Journal of the American Academy of Child and Adolescent Psychiatry, 53(12), 1317–1327.e1. https://doi.org/10.1016/j.jaac.2014.09.015
Courchesne, E., & Pierce, K. (2005). Brain overgrowth in autism during a critical time in development: implications for frontal pyramidal neuron and interneuron development and connectivity. International journal of developmental neuroscience : the official journal of the International Society for Developmental Neuroscience, 23(2-3), 153–170. https://doi.org/10.1016/j.ijdevneu.2005.01.003
Eldevik, S., Hastings, R. P., Jahr, E., & Hughes, J. C. (2012). Outcomes of behavioral intervention for children with autism in mainstream pre-school settings. Journal of autism and developmental disorders, 42(2), 210–220. https://doi.org/10.1007/s10803-011-1234-9
Elsabbagh, M., Bruno, R., Wan, M. W., Charman, T., Johnson, M. H., Green, J., & BASIS Team (2015). Infant neural sensitivity to dynamic eye gaze relates to quality of parent-infant interaction at 7-months in infants at risk for autism. Journal of autism and developmental disorders, 45(2), 283–291. https://doi.org/10.1007/s10803-014-2192-9
Garon, N., Zwaigenbaum, L., Bryson, S., Smith, I. M., Brian, J., Roncadin, C., Vaillancourt, T., Armstrong, V., Sacrey, L. A., & Roberts, W. (2016). Temperament and its Association with Autism Symptoms in a High-risk Population. Journal of abnormal child psychology, 44(4), 757–769. https://doi.org/10.1007/s10802-015-0064-1
Green, J., Pickles, A., Pasco, G., Bedford, R., Wan, M. W., Elsabbagh, M., Slonims, V., Gliga, T., Jones, E., Cheung, C., Charman, T., Johnson, M., & British Autism Study of Infant Siblings (BASIS) Team (2017). Randomised trial of a parent-mediated intervention for infants at high risk for autism: longitudinal outcomes to age 3 years. Journal of child psychology and psychiatry, and allied disciplines, 58(12), 1330–1340. https://doi.org/10.1111/jcpp.12728
Hampton, L. H., & Kaiser, A. P. (2016). Intervention effects on spoken-language outcomes for children with autism: a systematic review and meta-analysis. Journal of intellectual disability research: JIDR, 60(5), 444–463. https://doi.org/10.1111/jir.12283
Lambert-Brown, B. L., McDonald, N. M., Mattson, W. I., Martin, K. B., Ibañez, L. V., Stone, W. L., & Messinger, D. S. (2015). Positive emotional engagement and autism risk. Developmental psychology, 51(6), 848–855. https://doi.org/10.1037/a0039182
Macari, S. L., Koller, J., Campbell, D. J., & Chawarska, K. (2017). Temperamental markers in toddlers with autism spectrum disorder. Journal of child psychology and psychiatry, and allied disciplines, 58(7), 819–828. https://doi.org/10.1111/jcpp.12710
MacDonald, R., Parry-Cruwys, D., Dupere, S., & Ahearn, W. (2014). Assessing progress and outcome of early intensive behavioral intervention for toddlers with autism. Research in developmental disabilities, 35(12), 3632–3644. https://doi.org/10.1016/j.ridd.2014.08.036
National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention. (2022, March 2). Data & statistics on autism spectrum disorder. Centers for Disease Control and Prevention. Retrieved February 17, 2023, from https://www.cdc.gov/ncbddd/autism/data.html
Osterling, J. A., Dawson, G., & Munson, J. A. (2002). Early recognition of 1-year-old infants with autism spectrum disorder versus mental retardation. Development and psychopathology, 14(2), 239–251. https://doi.org/10.1017/s0954579402002031
Ozonoff, S., Gangi, D., Hanzel, E. P., Hill, A., Hill, M. M., Miller, M., Schwichtenberg, A. J., Steinfeld, M. B., Parikh, C., & Iosif, A. M. (2018). Onset patterns in autism: Variation across informants, methods, and timing. Autism research : official journal of the International Society for Autism Research, 11(5), 788–797. https://doi.org/10.1002/aur.1943
Pierce, K., Marinero, S., Hazin, R., McKenna, B., Barnes, C. C., & Malige, A. (2016). Eye Tracking Reveals Abnormal Visual Preference for Geometric Images as an Early Biomarker of an Autism Spectrum Disorder Subtype Associated With Increased Symptom Severity. Biological psychiatry, 79(8), 657–666. https://doi.org/10.1016/j.biopsych.2015.03.032
Roberts, Jacqueline & Williams, Katrina & Carter, Mark & Evans, David & Parmenter, Trevor & Silove, CLinical Associate Professor Natalie & Clark, Trevor & Warren, Anthony. (2011). A randomised controlled trial of two early intervention programs for young children with autism: Centre-based with parent program and home-based. Research in Autism Spectrum Disorders – RES AUTISM SPECTR DISORD. 5. 1553-1566. 10.1016/j.rasd.2011.03.001.
