“This is likely reflective of the way our current diagnostic system is more inclined to recognize and diagnose boys,” says Jessica Myszak, PhD, a psychologist specializing in child autism evaluation and director of The Help and Healing Center. Clearly, there is a disparity in sex when it comes to identifying and diagnosing autism, but there may be differences in age as well. According to a meta-analysis from 2012 to 2019, the average age in which children are diagnosed with autism is 60.48 months, or approximately five and a half years. For females, this can take even longer. A recent study reports that females are diagnosed with autism typically a year and a half later than males. We know that the earlier children are diagnosed, the sooner they can receive necessary services and support. Delays in diagnosis for all children can be detrimental to learning and development.
Symptoms of Autism
According to Doreen Granpeesheh, Ph.D, BCBA-D and founder of Center for Autism and Related Disorders, autism has a range of symptoms that can vary widely. “Autism has a broad array of symptoms and not every child exhibits every symptom,” she says. “That is why it is called a spectrum.” Among these are delays in communication and social behaviors as well as stereotyped repetitive behaviors. “Social communication [differences] include difficulties with social-emotional reciprocity, nonverbal communication, and relationship skills,” adds Dr. Myszak. According to Dr. Myszak, these may include:
Difficulties with back-and-forth conversationLack of sharing information with othersLack of sharing emotions with othersUnusual affect (display of emotion)Difficulties initiating social contactsDifficulties responding to social requestsUnusual combination/use of verbal and nonverbal communicationAtypical eye contactAtypical body languageDifficulties understanding gesturesAtypical use of gesturesLack of facial expressionsLack of nonverbal communicationDifficulties shifting behavior to suit different social contextsDifficulties with imaginary playDifficulties with sharingDifficulties making friendsDisinterest in peersFor children, getting along better with adults than peersHaving to problem-solve social details which seem to come naturally to others
According to Dr. Myszak, potential restricted, repetitive patterns of behavior, interests, or activities may include:
Stereotyped motor movements, such as hand flapping, toe-walking, or spinningRepetitive use of objects, such as lining up toys, tapping, or spinning particular toysRepetitive speech patterns, such as echolalia or recurrent use of particular phrasesDifficulties with change (extreme distress at small changes)Wanting things to be the sameRitualized patterns of behaviorDifficulties with transitionsRigid thinking patternsVery specific greeting ritualsNeeding to take same route or eat the same food every dayHighly restricted, fixated interests that are abnormal in intensity or focusStrong attachment to or preoccupation with unusual objectsExcessively circumscribed interestsHyper-reactivity to sensory inputUnusual interests in sensory aspects of the environmentApparent indifference to pain/temperatureAdverse response to specific sounds or texturesExcessive smelling or touching of objectsVisual fascination with lights or movement
Does Autism Present Differently in Males and Females?
Dr. Granpeesheh explains that overall, males and females with autism present similarly; however, some of the characteristics of autism may be considered more socially acceptable for girls. “For example, being quiet, shy, passive or isolated may be considered acceptable in a young girl and will not raise as many concerns as when these behaviors are seen in a boy. As a result, girls may be diagnosed later in age,” Dr. Granpeesheh adds. Stephanie Churma, a late-diagnosed woman with autism, and CEO of The Good Love Company, explains that some children might turn to “masking,” which is the subtle process of “acting” neurotypical. “It is learned as a child, in order to fit in with peers,” she explains. Churma describes masking as “scripting conversations, pushing through autistic burnout to perform at work, [and] dressing or acting like friends.” One of the costs of masking is “needing lot of recoup time after social interactions,” she says.
Diagnosing Autism
For children with autism, receiving a diagnosis means having access to crucial skill-building resources. The earlier the diagnosis, the earlier that appropriate accommodations and/or interventions can be initiated. Additionally, being diagnosed may help individuals contextualize their own behaviors and provide a sense of relief. “Knowledge of the diagnosis can provide understanding to the individual and to others, and the importance of this should not be underestimated,” Dr. Myszak says, adding that “for many adolescents and adults who did not know they were autistic, learning the reason why they experience the world differently can be an incredible relief.”
The Diagnostic Process
The process of getting an autism diagnosis usually begins with parents seeking an evaluation, either on their own accord or upon recommendation from a healthcare provider or teacher. “Psychologists, neurologists, and developmental pediatricians most commonly diagnose autism by using standardized measures [to show] how a child is doing in various areas compared to their peers,” says Dr. Myszak, adding that parents are typically asked to provide rating scales, and the child will be assessed using several measures. “Once the testing is complete, the professional writes up a report and [provides] recommendations for next steps.”
Criteria Used to Make a Diagnosis
The criteria for autism is taken directly from the diagnostic and statistical manual of mental disorders and consists of specific behaviors, says Dr. Granpeesheh. According to the DSM-5, diagnostic criteria for autism includes deficits in social communication and interaction, restricted or repetitive behavior patterns, and symptoms must be present in early development while also significantly impacting functioning. Lastly, symptoms must not be better explained by another disorder or disability, such as intellectual disability or global developmental delay. Impairment in social communication may be a lack of social-emotional skills, reduced affect, or inability to initiate and engage in conversation. Restricted and repetitive behaviors can range from repetitive motor movements, such as spinning objects, to fixated interests and difficulty with change.
After the Diagnosis
Now that you’ve gone through the lengthy process of getting an evaluation and your child has received a diagnosis, you may be wondering what comes next. “After the diagnosis, parents should provide the diagnostic report to their medical insurance, receive authorization for [evidence-based interventions], and find a provider [for] as many hours as necessary,” suggests Dr. Granpeesheh. Before deciding on a treatment option, It’s always a good idea to reach out to your healthcare provider for suggestions for specific therapies and next steps. In addition, Dr. Myszak suggests that parents contact their child’s teachers. “Families are usually encouraged to share this information with the child’s school so the child can get an Individualized Education Program (IEP) and have appropriate supports,” Dr. Myszak explains. An IEP provides individualized services in school settings to people with disabilities, at no cost to families.
Biases in Autism Diagnosis and Treatment
Many professionals would agree that biases exist when it comes to autism diagnosis and treatment. This may be due to a lack of research about autism in females, according to Dr. Myszak. “Autism can look very different in females, and since much of the research done has been on males, most of our education and assessment tools are likely skewed towards recognizing autism in males,” says Dr. Myszak. Dr. Granpeesheh emphasizes that some qualities of autism are more socially accepted when exhibited by females, which is why girls with autism are sometimes misdiagnosed. “Gender bias leads society to accept certain behaviors…in girls but not boys,” adds Dr. Granpeesheh. “When these behaviors present in children with autism, they can be overlooked for a longer period of time if the child is a girl.”
Advocating for Your Child
Advocating for your child is extremely important. If you are unhappy with an evaluation or feel your child’s challenges are being overlooked, speak up and seek out a second opinion. “Most importantly, make sure that the person doing an evaluation is familiar with how autism presents in females,” suggests Dr. Myszak. Churma points out that not every diagnostic doctor is up to speed on the current criteria, and sometimes, it can be on the parents to “fight for your child.” Similarly, Granpeesheh adds, “All parents…should insist on answers if they feel there is something different about their child, and these differences are causing the child to struggle. You may need to seek a second opinion or even reach out to experts in other states so that your child receives an early diagnosis and becomes eligible for services they desperately need.”
A Word From Verywell
Getting an autism diagnosis provides access to support and resources to a child who needs them. Understanding the symptoms of autism and how autism is diagnosed can arm parents with knowledge. Moreover, being aware of biases in autism assessment and treatment empowers parents to advocate for their children if they feel their diagnosis is being missed.
