P.K. presents for a medical evaluation to the early intervention program. He is 26 months old. P.K.’s parents self-referred to the early intervention program because of concerns regarding a delay in his development. The mother reports that he is not saying any words and is not following directions. He does not turn to the sound of his name. He appears to be in his own world. When I, the pediatric consultant, meet this cute boy to begin the evaluation, he is hesitant to leave his mom’s arms and is not interested in the toys on the floor. In addition, he is nonverbal and makes no eye contact.
As part of the evaluation, I ask the parents what therapies this child has received so far. The mother reports the child has received some occupational and speech therapy. Given that he is nonverbal, I inquire about his hearing. The mom states he passed his newborn hearing screen, but a follow-up hearing test had not yet been done. How did P.K. come to the early intervention program for evaluation in the first place? The early intervention program exists in every state to address developmental delays or assist those at high risk of developmental disability from birth to 3 years.
The system
Anyone can apply to the early intervention program if they are under the age of 3 years. As an important note, the early intervention program is a supplemental resource to any existing medical insurance that can also cover such therapies. A child can receive services through their provider and services through the early intervention program until the age of 3. If a child is over three years of age and still needs support, then the school system can provide some support. The family can also seek additional support privately and/or through their insurance. In effect, public schools, unlike private schools, are required by law to provide education-focused support for the child. The school can support children with disabilities with “school-facing therapies,” which is understood to mean occupational, speech, physical, and behavior therapy. Unfortunately, these therapies relate only to supporting education-related deficiencies in these areas and hence do not cover needed “home-facing therapies,” meaning behavioral training focusing on activities of daily living such as grooming, toilet training, and redirecting self-injury or aggressive behaviors. Medical insurance can address some of these “home-facing therapies.” Thus, with school, insurance, and/or private pay, there is more comprehensive support for the child.
Frequently, both families and providers do not understand the system well enough to take advantage of what is available for the child, as described above. By understanding the system and what particular insurances offer, providers can better assist families who may need additional support.
The case
Based on my assessment, I suspected P.K. to have autism with poor joint attention. We also observed that he had developmental delays in all areas except gross motor. Recommendations were to start with applied behavioral analysis therapy based on joint attention. A follow-up with an audiology screen to rule out hearing loss was also recommended. A referral for an official autism evaluation was advised. Once the joint attention improved, occupational, speech, and a group early intervention class for socialization could be added to his treatment plan. Improved joint attention would enable P.K. to be more receptive to therapy, follow directions, and improve learning. Applied behavioral analysis therapy is a type of behavioral therapy; other types of behavioral therapies also exist.
What is joint attention and why is it important?
The concept and importance of joint attention, or joint regard, was foreign to me as a pediatrician until I started assessing kids at the early intervention program in California. Joint attention is an important preverbal skill required for effective communication; it is the shared focus of two individuals on an object. It can be achieved when one individual alerts another to an object by means of eye gazing, pointing, or other verbal or nonverbal indications. Without joint attention skills, speech can be delayed or not develop appropriately. Joint attention should be fully developed by 15 months or at the latest by 18 months. If this is not the case—i.e., the child is not turning to the sound of his name or not following simple commands—this should be a red flag for both the family and the provider to refer to early intervention services (1).
Joint attention has been found to play a pivotal role in the development of language skills in neurotypical, neurodiverse, and children with other disabilities. Evidence shows that joint attention is directly related to how well language and social skills develop in kids with autism; those autistic kids with poor joint attention have worse speech and social outcomes (2, 3).
Conclusion
All the facts above were part of my realization. I was trained to refer kids with developmental delays, such as suspected autism, to a specialist. However, I was not trained to understand the developmental therapies, the system, or the nuances within child development that would explain further, for example, why there may be delays in a child’s communication. This narrative must change.
With the exploding number of autistic children and more awareness of this condition, there is an urgent need for providers of these individuals to catch up and learn more about autism. Collaborating with the local early intervention programs may help. Referral for a diagnosis and treatment is important, but far from enough. As the primary care provider, it is also necessary to know and understand the resources in the community, the types of therapies offered, the system, and how insurance plays a role in the care of your patient. All these pieces have an interconnected relationship. Being aware of the presence or absence of certain aspects of development, such as the concept of joint attention, allows for spotting red flags early. Doing so allows for early intervention and better outcomes for your patient.
A bit of knowledge by the provider can go a long way in improving the outcomes of autistic individuals. Let us, as providers, be part of the solution and not part of the problem.
Maria Mba Wright is a pediatrician.
