Why Might an Autism Diagnosis be Delayed?

Autism rates are increasing, with about 1 in 36 U.S. children being diagnosed with autism, each year. However, people who may be on the spectrum aren’t always diagnosed at a young age. There are many reasons why a child may not receive an autism diagnosis at a young age. 

A child has good grades
When children are successful academically, parents and teachers might assume there isn’t a problem or a need for additional support. So, even when a child struggles to regulate their emotions or relate to their peers, if they’re doing well academically, these missing social-emotional skills may go unnoticed.

“Grades are an easy way to measure when a child isn’t doing well, but there are many areas where a child with autism may struggle that aren’t measured as tangibly,” says Emma Iverson, Fraser Director of Center-Based Day Treatment. “Although social-emotional development is becoming more a part of school curriculum, it’s harder to quantify that.”

ADHD and autism symptoms can overlap
Both autism and attention-deficit/hyperactivity disorder (ADHD) are neurodevelopmental disorders, which means these impact an individual’s brain development. Both autism and ADHD also affect how a person processes information and how they navigate the world around them. Autism and ADHD also commonly co-occur. Estimates vary, but the CDC states a study of children from ages 3-17 found that 14.4% of those with ADHD also had autism. 

At the same time, some symptoms may seem to indicate both diagnoses. Iverson gives the example of a child who misses social cues, like a peer or a teacher asking them a question. For a child with ADHD, they might miss the question because their brain didn’t focus, and they were distracted. For an child with autism, they might miss the question because their brain didn’t categorize it as relevant or necessary information to listen to. The difference between their lack of reaction is incredibly subtle, and likely only a mental health expert could spot it. 

Individuals with autism and ADHD may also have difficulty with emotional regulation or behavior, which can cause problems in school, at home and later in life, at work and in relationships. 

Because autism is a spectrum, it can be misdiagnosed
There is a common saying among the autism community: if you’ve met one person with autism, you’ve met one person with autism. Some people with autism use eye contact; some don’t. Some engage in stimming behaviors, like flapping their hands; others don’t. Some individuals with autism use vocal language, while others may communicate through a speech-generation device or visual communication cards. Some lose language when they’re stressed, but otherwise communicate vocally. 

Again, a child who needs less support — e.g., uses vocal language, makes eye contact and doesn’t engage in stimming — may not receive an autism diagnosis, or they may be diagnosed with something else.  

Since autism presents differently in each person, it is also a complex assessment process. Also, unlike diagnosing other conditions, there isn’t a blood test or a known gene marker.

“A diagnosis of ASD is based on a pattern of behavior,” says Iverson. “A clinician needs to gather a lot of information about the child, teen or adult.” 

You need a full autism evaluation to diagnose autism

In other words, autism can’t be diagnosed quickly at a doctor’s visit. A diagnostic assessment is typically 1-2 hours long. According to the American Academy of Pediatrics, “A diagnosis of ASD is ultimately made based on your description of your child's development, plus careful observations of certain behaviors by your pediatrician, autism experts, medical tests and your child's history.” Parents may find it helpful to review baby books, medical records, journals, etc., to refresh their memory about their child’s development beforehand.

For a Fraser telehealth appointment, a clinician first meets with a parent or a guardian and then has a follow-up appointment with a child. For an in-person appointment, both parent and child are present. 

Autism assessments typically include an interview with the parent or caregiver and time spent with the child. The structure varies depending on your child’s age. For example, play materials are often used with younger children, and games or conversation are used with older children and adults.  

Girls are diagnosed less
A 2014 study by the Cleveland Clinic tested 2,418 autistic children, and 304 were girls. The girls were “more likely to have low IQs and extreme behavior problems." This is not to say that autism behaviors are more extreme in girls, but rather, a girl has to exhibit more extreme behavior and lower cognitive abilities to be diagnosed. Girls who behave in a more neurotypical fashion are less likely to receive a diagnosis.

Girls may also be better at masking behaviors. An Australian study comparing boys and girls with autism found little girls were “more likely than boys to mimic others in social situations and to want to fit in with other kids.”

“This is likely due to gender-based expectations girls and women experience,” says Jael Jaffe-Talberg, Fraser pediatric clinical psychologist. “They are socialized to ‘act like a girl’ and experience greater pressure to censure their own behaviors.”

There are systematic racial biases
Systematic biases can also prevent a diagnosis. VeryWell Health states, “Income and race affect almost every aspect of healthcare in the United States, and ASD is no exception. Children of color, especially Black children, are more likely to be misdiagnosed or diagnosed with autism later in life due to systemic racial biases.”

Parents or caregivers often get a referral from a pediatrician or school to access a diagnosis. Families might encounter systemic racial biases at either the doctor or at a school. A Black parent’s concerns are more likely to be dismissed at the doctor’s office. Behavior concerns, which can be a symptom of autism, are often diagnosed as something else, particularly in Black children, like misbehavior, intellectual deficits and or other mental health issues. The Center for Law and Social Policy states, “Black children in the K-12 system are more likely to be disciplined than their peers for defiance or other common behaviors. And Black students are overrepresented in referrals to law enforcement, in-school and out-of-school suspensions, corporal punishment, and expulsions at every age level, even though white students are referred to the principal’s office more.” Rather than being referred for an assessment for behavior concerns, Black children are more likely to be punished.

Also, initial autism research focused almost exclusively on young, affluent white males. Autism testing was also designed around this population. In recent years, testing has changed to mitigate some of these biases, and many clinicians are more cognizant of cultural and social differences, when evaluating individuals. 
The increased education and social awareness of autism have also affected change. The more people learn about autism, the more they can recognize the signs and behaviors. Likewise, the more therapists learn about how cultural and social norms may impact an individual’s presentation of autism, the more able they are to navigate around those during an assessment. 

Iverson gives the example of some cultures where young people aren’t encouraged to make eye contact with authority figures or adults. In these cultures, not making eye contact is the norm, and it wouldn’t necessarily imply that a young person has autism. Being aware of these norms helps mental health professionals make more informed diagnoses. 

A later diagnosis isn’t a failure
Over her career, Iverson has also encountered many parents and caregivers who may feel like they failed their child because they weren’t diagnosed with autism at an earlier age. However, developmental expectations look different at different ages, so some difficulties might not emerge until those demands exceed the child’s capacity. 

“When kids are young, the social expectations are less complex, so it’s easier for them to keep up with their peers, and they may not need additional support,” says Iverson. 

Kids may also not realize that what they’re experiencing is any different from what other people experience. So, until social interactions become more complex and they have more insight, maybe a child or parent isn’t noticing that it’s hard for them to interact with peers. 

“I often tell parents that it’s most important to focus on their child’s current needs for support or intervention. We know that this will change over their lifespan, and Fraser will be here to help with future needs too,” says Iverson.