For instance, autistic kids may have speech and language delays, display behavioral differences, and interact with others differently than other kids their age. This doesn’t mean that there is anything wrong—they are simply neurodivergent. But at this time, parents may start to question if there’s something they should do. If you find yourself in this situation—where you wonder if your child might be autistic—beginning the assessment process to get an official diagnosis may seem like a daunting task. Below we help alleviate some of this stress by discussing how you can get your child tested for ASD including where to start and what traits to look for.
What Is Autism Spectrum Disorder (ASD)?
According to the Centers for Disease Control and Prevention (CDC), autism—or autism spectrum disorder (ASD)—is a “developmental disability caused by differences in the brain.” Those with ASD generally think, process their senses, move, communicate, and socialize in a consistent range of ways that differ from how allistic (aka non-autistic) people do, according to the Autistic Self-Advocacy Network (ASAN), a non-profit run by autistic people for autistic people. ASD is generally diagnosed in childhood. The CDC estimates that about one in 44 8-year-olds is autistic. But this data is narrow in scope—it was collected in 2018 from the health and special education records of children living in only 11 communities across the U.S. This means it likely doesn’t accurately account for racial or gender disparities, especially bearing in mind that White males are diagnosed at a much higher rate than females or BIPOC children. (In fact, the CDC even explored these holes in their data in a 2021 report.) In the past, there were different diagnoses for autism but in 2013, the American Psychiatric Association merged four distinct autism diagnoses into one diagnosis: ASD. Included in this merge is what was originally known as autistic disorder, childhood disintegrative disorder, pervasive development disorder, and Asperger syndrome. The primary reason for changing the diagnosis to a spectrum disorder is because experts recognized that there is no one type of autism but many subtypes. In other words, people with ASD are as diverse as their non-autistic peers with a variety of strengths and support needs. “According to current DSM-5 diagnostic criteria, there are three levels of autism based on the severity of symptoms and how much support an individual requires: Level 1 (mildest, requiring support), Level 2 (requiring substantial support), and Level 3 (most severe, requiring very substantial support),” explains Christine Eichelberger, PhD, a psychologist at the Center for Autism Spectrum Disorders at Nationwide Children’s Hospital. However, classifying autism as “low functioning” or “high functioning” is reductive and simplistic. The ways in which autistic people learn, communicate, think, problem-solve, and move can range across a spectrum that cannot be simplified into narrow categories. Typically, the traits of ASD appear by age 2 or 3 but some developmental delays can appear even earlier. Kids can be diagnosed as early as 18 months, says Meagan Adley, PsyD, a pediatric psychologist at Cleveland Clinic Children’s Center for Autism. However, some autistic kids will never display developmental delays or the “traditional” traits of autism (as described by well-meaning allistic professionals) which may mean they don’t receive a diagnosis until adulthood. “One of the most-discussed traits of autism spectrum disorder is difficulty with social engagement,” says Dr. Adley. “So, a very young child might have difficulties with back and forth, not make eye contact, seem disinterested, not respond to their name, not have a social smile, not point or wave, and seem fixated on certain objects early on.” It’s important to remember, though, that not every child will display these traits, and the appearance of these traits does not necessarily indicate a child is autistic.
How ASD is Diagnosed
Diagnosing ASD is a complex process because there is no medical test or blood test to diagnose the disorder. Instead, healthcare providers look at a variety of factors to make a diagnosis including the person’s developmental history and behavior.
Not displaying big smiles or joyfulness as a babyAvoiding eye contact or having limited eye contactLacking facial expressionsExperiencing delayed or fast and advanced language developmentRefraining from pointing, waving, or reachingLosing previously acquired speech, babbling, or social skillsPreferring solitude and alone timeHaving difficulty understanding feelings or social cuesDisplaying ongoing repetition of words or phrasesResisting minor changes in routine or surroundingsHaving restricted interestsEngaging in repetitive behaviors (flapping, rocking, spinning, etc.)Having intense or unexpected reactions to sounds, smells, tastes, textures, lights, and/or colors
“In order to be given a diagnosis of autism, an individual must satisfy the diagnostic criteria outlined in the DSM-5,” says Dr. Eichelberger. “This includes deficits in social interaction and communication as well as restricted repetitive and stereotyped patterns of behavior. The symptoms have to exist in early childhood, impair the individual’s functioning, and are not better explained by a different diagnosis.” In the end, diagnosis of ASD is made by using all the information collected by history, observation, and testing. Here are some of the tests and methods that are used to diagnose ASD.
Developmental Monitoring
According to the American Academy of Pediatrics (AAP), pediatricians often begin looking for traits of ASD during the very first well-child visit. In fact, they will watch how your baby laughs, looks to you, attempts to get your attention, uses hand gestures, and even cries. These cues combined with your family history, health exams, and input from you will help them determine if your baby is likely to be autistic. Often referred to as developmental monitoring, this process involves watching how your child grows and changes over time. Healthcare providers are looking for whether or not your child meets the typical developmental milestones when it comes to speaking, behaving, learning, playing, and moving. They also might ask you questions about your child’s development as well as talk and play with your little one to see if they are developing and meeting milestones. You also can participate in developmental monitoring. If you notice that your child is not meeting milestones, talk with your child’s pediatrician or a healthcare provider about your concerns.
Well-Child Visits and Developmental Screenings
At your toddler’s 18- and 24-month well-child visits, the AAP recommends screening all kids for ASD in addition to regular developmental observations. This type of screening can help determine if your child has any significant developmental and behavioral challenges early on. Additionally, screening is recommended for all kids, not just those with specific traits. Overall, there are a multitude of tools your provider may use to screen your child. The AAP does not endorse one particular type of screening, so your healthcare provider may choose from any number of tools including ages and stages questionnaires, the pervasive developmental disorders screening test-II, communication and symbolic behavior scales, and a modified checklist for autism in toddlers.
Comprehensive Behavioral Evaluations
Although a brief test using a screening tool does not provide an ASD diagnosis, it can provide insight into whether or not your child is on the right development track or if a specialist should take a closer look. If the screening tool identifies an area of concern, a formal developmental evaluation may be needed. “A team of professionals—a psychologist, speech-language therapist, occupational or physical therapist, and developmental-behavioral pediatrician/psychiatrist/neurologist—observes [your] child’s current behavior, reviews their developmental and medical history, and interviews [you], the parents, in order to determine a diagnosis,” explains Dr. Eichelberger. “As part of this assessment, a direct interaction measure such as the Autism Diagnostic Observation Schedule (ADOS) is usually administered by a trained clinician.” Overall, this is a formal evaluation that provides a more in-depth look at your child’s development. These specialists may observe your child, give them a structured test, ask you questions, or ask you to fill out questionnaires.
Genetic Testing
The AAP recommends that families be offered genetic testing, such as Chromosomal Microarray (CMA) testing and Fragile X testing, especially if they are diagnosed with ASD. Currently, as many as 20% of children with ASD have differences in their chromosomes that can be identified using genetic testing. In fact, some studies indicate that up to 25% to 35% of patients are identified with certain types of genetic tests. If your child has unusual physical features or developmental delays or if there is a family history of Fragile X Syndrome, intellectual disability of unknown cause, or other genetic disorders, you may want to talk to your child’s healthcare team about genetic testing. “There are specific genetic conditions—such as Prader-Willi Syndrome, Angelman Syndrome, Rett Syndrome, Landau-Kleffner Syndrome, William’s Syndrome, and Fragile X—which are associated with autistic-like characteristics,” Dr. Eichelberger says. “Therefore, the medical component of a formal autism evaluation often includes genetic testing in order to determine any genetic causes of the child’s delays.”
Why You Should Get Your Child Tested for ASD
While the thought that your little one might have ASD can feel overwhelming, it is important that you do not ignore the things you are seeing or experiencing. Instead, make sure you bring your concerns to a healthcare provider or your child’s pediatrician, Dr. Adley says. “Research demonstrates that early intervention leads to positive outcomes later in life for people with autism,” Dr. Adley says. “So, the sooner a child is diagnosed, the better the outcome. Starting early can help the child learn better coping strategies and give both the parents and the child access to education and support early.” Plus, once a child is tested and receives a diagnosis, they can begin evidenced-based therapies and have access to supports, services, and accommodations that can improve their outcome and quality of life, Dr. Eichelberger says. Since the spectrum is so wide, these therapies and supports can vary for different kids, so it’s important to consult with your provider before determining a course of action. It’s also important for parents and caregivers to seek advice from autistic adults through support groups or organizations. Autistic people know themselves best, and connecting with the community means parents can learn from those who’ve experienced autism themselves, not just from well-meaning professionals. Certain therapies, and funding for those therapies, rely on having a formal diagnosis of autism from a trained professional, she says. Early intervention can be crucial to your child’s future success. “[Plus] the brain is more malleable in the first few years of life, [and] it is easier to help young children reach important developmental milestones in the areas of social skills, communication, motor skills, and self-help skills,” Dr. Eichelberger says. “Starting early intervention also results in reduced frustration for the child and fewer problem behaviors.”
A Word From Verywell
If you suspect that your child might have ASD, do not hesitate to bring your concerns to a healthcare provider or your child’s pediatrician. They can provide some initial screening and refer you to specialists if additional testing is needed. Remember, the sooner you receive an official diagnosis, the better it is for your child in the long run. Aside from the fact that early diagnosis can benefit both you and your child, there also is a chance that your child could have something other than ASD, so it is important to be upfront with your providers about what you are witnessing at home.
