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Shedding Light on Developmental Blind Spots

child's face hidden behind colorful toy blocksOne day when I was speaking to a medical student shadowing me in my developmental pediatrics practice at the Rose F. Kennedy Children’s Evaluation and Rehabilitation Center, where I specialize in the early identification of autism, I commented that I often spend my days contending with blind spots. “How so?” he asked. I started with a definition.

Blind spot:

    1. An area that is not able to be seen, either due to its location outside the field of vision or due to some physical obstruction or a defect in one’s vision. Often used to describe the areas around a car that cannot be seen with the rearview or side mirrors.
    2. By extension, an area of knowledge or understanding that you do not have or do not pay attention to.

The second definition was to be our focus I explained—the blind spots resulting from either a lack of knowledge about development, or from something being seen so frequently that on a certain level, it becomes invisible. I elaborated that I see the fallout from blind spots in parents, healthcare providers and educational systems. They can interfere with or delay a child receiving an early diagnosis of autism and therefore being offered appropriate services that can lead to the best outcome for the child.

I’ve recently been named the New York State Act Early Ambassador by the U.S. Centers for Disease Control and Prevention. In that role, I am charged with working to support parents and systems in the early identification of children with autism and other developmental disabilities so they can get the help they need. “Learn the Signs. Act Early.” is designed with blind spots in mind. Its strategy for early identification of autism and other developmental disabilities is to cast a wide net of responsibility, encouraging developmental monitoring of young children by everyone who has contact with them and providing educational and free materials to make that a reality. These monitors include parents, healthcare providers and early educators, all of whom can identify when a child’s development has gone off course.

In taking this student through my day, I helped him identify those blind spots. Here are a few of the children we saw.

Parental Blind Spots

A parent can have a blind spot about something amiss with a child’s development or behavior. It can be the result of a “That’s just the way he is” mind-set, or it can stem from a lack of knowledge about child development—or from outright denial. Often it’s an observation by someone else that opens a parent’s eyes.

The mother of the first child we saw, “Damian,” reported that she hadn’t been concerned that her 2½-year-old wasn’t talking until another child at the park asked her son to play and the mother had to explain that Damian was big for his age and not yet able to speak. The other child appeared incredulous. The mom went home and Googled “age of talking” and realized that by now her son should be speaking in phrases and having conversations. Before the encounter at the park, she hadn’t been concerned.

Next came “Jordan,” who was referred by his physician for not speaking at 24 months. Jordan could have been diagnosed with autism during the time it took for him to walk from the waiting area to my office. His mom was not really concerned, though, because she reported that he had started speaking since the referral. She had almost canceled the appointment. Hmm….

Jordan dumped out toys from a bin and scattered and mouthed them. He did not engage in pretend play with a toy truck and did not imitate my actions with the toys. I heard no language. A large part of a developmental evaluation of a young child involves getting a detailed history from the parents about what the child can do at home. I asked the appropriate questions. “How many times do you need to call his name to get his attention?” “Once,” the mother said. “Is he able to point to body parts or get his shoes on request from another room? “Yes,” she responded. The little boy in front of me seemed incapable of any of these tasks, so I asked the mom to please ask him to do each of these things. His mother was unable to get Jordan’s attention. She offered reasons: he was tired, he was distracted by the toys, he was stubborn. When I asked about his recent language burst, the mom reported that he had started to say sentences from his favorite YouTube video recently.

It was unclear where his mother’s blind spots came from (lack of knowledge? denial?), but I knew we would need to get on the same page so we could take the necessary first steps toward addressing his condition.

System Blind Spots

We then saw 3-year-old “Melody,” who had been diagnosed with autism through the New York City Early Intervention program program and received a set of autism-specific interventions. She was now aging out of that program, and her mother had Melody evaluated by the school district so services could be put in place in a preschool setting. The mother came to see me after the results of that evaluation indicated that Melody did not qualify for any therapeutic services.

Melody came enthusiastically into the office without greeting me and expertly completed a shape puzzle, labeling the shapes—octagon, pentagon and oval—as she replaced them. She knew her letters, too. While her mother agreed that Melody was bright, she pointed out that the little girl still could not have a conversation and did not play with other children. Indeed, Melody had clear signs of autism, as well as cognitive strengths. In this case, the system had a blind spot for signs of autism in a child with normal cognition.

A Pediatrician’s Blind Spot

It is not unusual for me to get a call from an experienced pediatrician who tells me he or she is seeing a 2½-year-old or a 3-year-old who is severely autistic but was never referred for early intervention. I can hear and sense the pain in that doctor’s voice that one of our own had a blind spot for an obvious case of autism.

“Ethan” presented a milder version of such a case. Almost 4, he had been referred for evaluation of hyperactivity. In the waiting area, he had been playing happily on an iPad at his mother’s side. When I called his name, his mom took away the iPad and Ethan proceeded to have a severe tantrum, kicking and screaming on the floor. On entering my room, Ethan went under my desk, where he turned off my computer. He had no interest in the toys and made little eye contact. I couldn’t get his attention by calling his name; he followed no commands. Other than screams of “No,” I heard no language from Ethan.

When his mom took Ethan out to change his diaper, the student said the child did indeed seem very hyperactive. “Would it surprise you,” I asked, “if I said that he was also severely autistic?” The student said “Yes.” He had spotted the hyperactivity, but because he had seen Ethan make eye contact a few times he didn’t even consider the possibility of autism.

When the mom came back with Ethan, I attempted to get him involved in doing puzzles, drawing, looking at pictures and talking about what he saw—but nothing held his attention. He was spinning my chair, turning the lights on and off and doing his own thing regardless of my requests or offerings. In explaining my concerns to Ethan’s mother, I noted that Ethan was very active, but also very self-directed. It was hard to get his attention and direct it. He would need to learn to pay attention to others in order to learn from the teacher and make friends. His mother asked if I thought he could have autism.

By the end of our day, my lesson for the student was that you can be a loving parent or a caring physician or a diligent early educator and still have a blind spot for the early signs of autism. Understanding those blind spots and working with programs such as “Learn the Signs. Act Early.” directed toward families, healthcare providers and early educators is the best way to help children with autism and other developmental disabilities receive an early diagnosis and the best outcome. Remember: Learn the Signs and Act Early. Don’t wait and see.

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