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By Susan J. White
Twenty years ago, one in every 150 children were diagnosed with autism. Newly released data from the Centers for Disease Control and Prevention (CDC) says that one in every 36 children are now identified as living with autism spectrum disorder (ASD).
Experts agree that the tremendous rise is due in large part to increased awareness and regular screenings that were not the norm years ago.
Universal screenings are now happening in primary care pediatric settings to pick up atypical behaviors. Screenings are routinely given at 18 and 24 months, in accordance with American Academy of Pediatrics Clinical Practice Guidelines.
“Like many screening measures designed to capture when development is not on target, the sensitivity is high, but the specificity is pretty low,” said NorthShore clinical child psychologist, Rebecca Nelson, PhD, who specializes in neurodevelopmental evaluations with infants and children.
While screenings are important and helpful in identifying potential early problems, when concerns are flagged Dr. Nelson encourages families to see a pediatric assessment specialist as diagnosing autism can be more complex than anticipated.
“This is not a simple diagnosis and I see so many things that can look like autism including anxiety, developmental delays, speech and language disorders that it can be very difficult for parents and even pediatricians to determine,” said Dr. Nelson, who is also concerned about the ongoing gender discrepancy in autism diagnoses.
“This is a major area we need to work on. There are still 3.8 times more boys than girls who are identified with ASD,” she said. “Girls tend to exhibit less stereotyped repetitive behaviors and restricted interests than boys, and we are learning girls are very good at what we currently refer to as camouflaging. Girls utilize compensation strategies, such as social scripting or imitation. Imitation skills help girls to blend in socially, until social demands become more nuanced and sophisticated and outpace their compensation strategies. This also can lead to a later age diagnosis for females.”
“I see young girls with suspected ASD who are consistently polite and very good at following the social niceties they have been taught. However, when they can no longer rely on an established social script or routine, such as being presented with spontaneous interaction or unstructured play situations, they can become unusually anxious,” added Dr. Nelson.
“Anxiety can be triggered with each new or unfamiliar social situation, especially group settings, such as a birthday party, a new classroom, or entering the next grade level in school. This can evolve into a cycle of anxiety and withdrawal. We know anxiety is more common diagnosis for females, and ASD and anxiety have high co-occurrence, so it is important anxiety is also a focus of treatment,” she said.
Earlier diagnoses of autism can lead to earlier and more appropriate treatment and hopefully prevent, minimize, or address other co-occurring disorders that can develop, like depression, or disordered eating and full-blown eating disorders.
Dr. Nelson suggests that parents think about the quality of communication and social interactions. “It’s more than whether a child has an age expected vocabulary, or going through a binary checklist of behaviors. We are examining how a child communicates, uses language, interacts reciprocally with others for age, what is the quality, -frequency, intensity of behaviors in question, and how adaptive their behaviors are,” she said.
Other signs to look for include unusual interests or limited range of interests for age, and sensorimotor stereotypies, such as repetitive hand-finger movements, spinning, toe-walking, or displaying specific sensory input (i.e., positioning themselves upside down or in relatively tight spaces).
Children with autism can be highly sensitive to sensory-tactile stimuli, such as being touched, having their hair or teeth brushed, or have extreme sensitivity to clothing: seams, collars, cuffs, etc. The opposite can also happen with stimuli needing to be more intense or pressured to be registered. And even more challenging is when children show a combination of both hyper- and hyposensitivity.
“Atypical gaze behaviors are also common, such as looking at things from the side or peripheral gazing, being attracted to lights or shiny or metal objects, or noticing tiny visual detail not noticed by most others. The issue of eye contact tends to be oversimplified. Children with ASD can be gaze avoidant with others, overly fixed, and generally have difficulty modulating social eye contact to regulate social interactions,” said Dr. Nelson.
“Every child is different, and addressing concern early is important for monitoring, and proper diagnoses and effective treatment if needed,” said Dr. Nelson. Evaluation for autism should include a thorough interview and history with parents, collateral input in the form of completed rating scales from other caretakers, teachers or therapists as relevant, use of standardized evaluation and ASD-specific measures appropriate for the child’s developmental age level, and recommendations to address identified areas of challenge (i.e., attention, self-help skills, interfering stereotypies, etc.). For children with suspected milder presentation, more than one evaluation sessions is suggested to gain more graded information about consistency in behaviors and interactions to guide interventions.
“I am hopeful that as we continue to do more research and education around autism we as a society will become more tolerant and find ways to utilize their strengths so people on the spectrum can live as fully as possible,” she added.
The ISCU Developmental Clinic evaluates infants, toddlers and preschoolers up to 5 years of age. Infants are referred directly from the ISCU to monitor early at-risk conditions (e.g., prematurity or other problems at birth). We also accept referrals from pediatricians, parents and other outside sources about a child’s development or behavior. For more information, please call 847.570.2208.