The number of children in the United States who have been identified with autism spectrum disorder (ASD) is increasing dramatically. The December 2018 issue of Pediatrics, reports that 1 in 40 children in the U.S. have been identified with ASD.[i] This is significantly up from a Centers for Disease Control and Prevention (CDC) study conducted in 2014 that estimated about 1 in 59 children (14.7 per 1,000 eight-year-olds) in the U.S. were identified with ASD.[ii]
While there is no consensus on what causes autism or the best course of treatment for it, everyone agrees that it is treatable.
However, getting from diagnosing ASD to treatment is not always easy, as the diagnosis process can often be inaccessible, time-consuming and stressful. Parents, who know their child best, will notice that he or she doesn’t seem to be developing normally or is not “quite right,” but frequently delay asking their pediatrician about it in the hope that their child will outgrow the problem. All too often, the pediatrician will dismiss the parent’s fears as nothing to worry about.[iii] Or, the doctor will not recognize the symptoms of ASD. This can be tragic for the child, because either course of action (or lack thereof) delays diagnosis and access to treatment—and it is extremely important when there is a concern about a child’s development that an assessment be sought as soon as possible so a diagnosis can be made and treatment, if necessary, can begin.
The earlier intervention begins for children with ASD, the better. Early diagnosis—ideally by the age of 24 months, which is currently the earliest age that ASD can be diagnosed, though symptoms can appear as early as 12 to 18 months[iv]—can make a huge difference and lead to significantly improved outcomes. Children receiving early intervention and intensive care see clinically significant improvements. Unfortunately, many children with autism aren’t getting a diagnosis until after they are 4 years old, so they are missing the most opportune time to be getting treatment.[v]
This makes the role pediatricians play in recognizing ASD, providing a referral to a specialist who can diagnose the child and helping parents find the best course of treatment for their child, critical. As the first person the parents most often turn to for advice, it is important that pediatricians be educated about ASD symptoms and kept abreast of the latest treatment advances.
Unfortunately, many pediatricians don’t have the resources, experience or specialized knowledge to effectively assist parents after the diagnosis of ASD is made. As a result, most parents and families don’t know where to start in order to find the information and resources that they need. It can be overwhelming for them to find local services and autism providers in their community. Navigating through autism service systems and not knowing how to take advantage of the services available in their community can also be stressful. Trying to understand the requirements to obtain insurance authorizations can be exhausting. Additionally, cultural differences and language barriers can be problematic—making it especially difficult for professionals to communicate with parents and appropriately train them.
What can make the situation worse is when the parents hope treatment will be a quick fix, with minimal time commitment from them. They want someone to “fix the problem” and may opt for the first easy treatment option they are offered—without understanding whether or not it is the best one for their child.
All of this can be avoided when the families’ pediatrician completely understands all of the various treatment options available and is able to provide an appropriate referral or fully explain just what is involved in the treatment. The pediatrician needs to be more fully educated on treatment options and have access to research that shows results that have been obtained, including the correlation between the effective quantity of service and treatment gains. Pediatricians who can’t provide this information leave the family feeling overwhelmed and under supported.
For example, if Applied Behavior Analysis (ABA) therapy is recommended, parents need to know that they will play a crucial and ongoing role in their child’s success. Additionally, the patients’ family needs to understand the impact that ABA implementation will have on their daily lives—both in terms of applying the appropriate recommendation of intensity (or hours) in services and in the duration of time needed to see therapeutic results, which could be two or more years. A stressful situation can be made worse, if this lack of understanding leads to the parents choosing lower levels of care that could affect their child’s prognosis and ultimate outcome.
Recognizing that many pediatricians do not have the specialized knowledge, information or access to professionals who can help families with children who have ASD, Alternative Behavior Strategies (ABS), is stepping in to fill the need.
Here are just five things ABS is undertaking to help families:
As the frequency of ASD continues to rise, it is creating a burden on health and community services, making access to these services increasingly problematic. By providing more support and information about ASD to pediatricians, who generally have the most frequent early contact with families, ABS anticipates helping prevent delays in diagnosing children with ASD and helping ensure that they receive earlier access to appropriate treatment.
Resources:
[i] Pediatrics. “The Prevalence of Parent-Reported Autism Spectrum Disorder Among US Children.” Michael D. Kogan, et al. December 2018, Volume 142, Issue 6. (http://pediatrics.aappublications.org/content/142/6/e20174161)
[ii] Centers for Disease Control and Prevention. “Autism Spectrum Disorder (ASD) Data & Statistics. Page last reviewed November 15, 2018. (https://www.cdc.gov/ncbddd/autism/data.html)
[iii] The Journal of Pediatrics. “Parental Concerns, Provider Response, and Timeliness of Autism Spectrum Disorder Diagnosis.” Katharine Elizabeth Zuckerman, MD, MPH, et al. June 2015. Volume 166, Issue 6. (https://www.jpeds.com/article/S0022-3476(15)00254-1/pdf)
[iv] Centers for Disease Control and Prevention; https://www.cdc.gov/ncbddd/autism/screening.html
[v] Centers for Disease Control and Prevention; https://www.cdc.gov/ncbddd/autism/data.html