Autism, sometimes referred to as autism spectrum disorder (ASD), is a developmental disability that can present in many different ways. The experiences and intensity of symptoms will vary for each child, which is why autism is considered to be a “spectrum.” A child who shows multiple behavioral traits that fit within certain categories may receive an autism diagnosis, but which criteria and how the symptoms are showing up will look different for everyone. To learn more about this, we spoke with Dr. Hitha Amin, neurodevelopmental neurologist at Children’s Hospital Orange County, and Dr. Stephen Kanne, a clinical pediatric neuropsychologist and director of New York-Presbyterian’s Center for Autism and the Developing Brain.
Note to our readers: A recent article on the use of language in autism research documents a preference among some people with autism for language that refers to “autism” and not “autism spectrum disorder (ASD).” While ASD is the medical term used by the DSM-5, many people with autism feel the term “disorder” pathologizes autism as something to be cured or fixed. As Dr. Amin notes, autism is an umbrella term that describes individuals in many different circumstances; to adopt the most inclusive language, we use the term “autism.”
What are the signs and symptoms of autism?
According to the Diagnostic and Statistical Manual of Mental Disorders (DSM-5)’s diagnostic criteria, a child with autism will have deficits in social communication and interaction as well as restricted, repetitive behaviors. While these criteria help provide a diagnosis, it does not mean that autism will look the same for each child. In fact, every child diagnosed with autism is different. One child with deficits in social awareness may struggle to reach out to their peers to initiate new connections, while another child may be very interested in meeting new people but struggle with impulse control or have social anxiety. Common signs and symptoms of autism include:
- Difficulty with social communication and interaction
- Appearing not to listen or engage with others
- Infrequently showing or sharing interest
- Being slow to respond to one’s name
- Having difficulty with reciprocal communication (including talking at length on a subject regardless of others’ interest)
- Responding with emotions, gestures, behaviors, or movements that are socially unexpected
- Having difficulty understanding or predicting another person’s point of view
- Having difficulty making friends
- Restrictive or repetitive behaviors
- Engaging in repetitive behaviors (such as stimming) or words or phrases (echolalia)
- Fixating on subjects of interest, or having long-standing interests in specific objects, details, or facts
- Having difficulty adjusting to changes in routine
- Being sensitive to sensory information such as light, sound, clothing, textures, or temperature
Autism has also been described as a condition of “context blindness,” which can be helpful for parents to consider as they support their children.
Common strengths of individuals with autism include:
- Ability to learn and remember detailed information
- Strong visual and auditory learning skills
- Strong skills in math, science, music, or art
To learn more about diagnostic criteria and how autism is diagnosed, read our article Diagnosing Autism.
What is the prevalence of autism?
According to the latest data from the CDC, 1 in 36 children have been identified with autism, with the rate of diagnosis increasing annually. While autism is found in all racial, ethnic, and socioeconomic groups, it is four times more common in boys than in girls. But this isn’t necessarily because boys more commonly have autism; it also comes down to disparities in the prevalence of diagnoses.
Factors such as bias in diagnosis and restricted access to care make a big difference in who is diagnosed and when. For example, girls are more likely than boys to use camouflaging or masking, terms used to describe strategies used by people with autism to hide or disguise their symptoms, which can make early identification of autism more difficult in young girls. Studies in racial and ethnic disparities in diagnosis also show that Black children with autism are often diagnosed later in life, while Hispanic children are less likely to be diagnosed at all in comparison to their white peers.
Does autism present differently in girls than in boys?
Autism may look different in girls and result in no diagnosis, late diagnosis (often two years later than boys), or misdiagnosis. “Girls may be more likely to exhibit behaviors that don't look as though they have features of autism,” Dr. Amin tells us. “So for instance, a girl may be more likely to play with dolls and [we say], ‘Oh look, she's feeding the doll. She's feeding the baby.’ These are not features that you would expect to see in a boy, who’s maybe just putting cars in a line. And then it's easier to say, ‘Oh look, he’s got restricted interests.’”
Missed diagnosis means many girls don’t receive early intervention, and even when they do, the standard interventions may not be appropriate or meet their unique needs. Far more boys are diagnosed with autism than girls (new data shows boys outnumber girls with autism diagnoses three to one), but does that mean that more boys actually have autism?
Read more about the differences in autism in girls and boys in our article Autism in Girls.
What are some common co-occurring diagnoses?
Having associated medical and mental health conditions is more common in children with autism than in the general population. It’s important to recognize these co-occurring conditions as they could stimulate or exacerbate the behaviors that occur in children with autism. For example, if a child is headbanging, it could be due to chronic, painful headaches (autistic individuals are 2.2 times more likely to have severe headaches) and the inability to communicate their symptoms. Similarly, food refusal or food selectivity could actually be the child reacting to a food allergy or intolerance (up to one-fourth of autistic children have food allergies!).
Other co-occurring conditions include sleep disorders, which occur in about 80% of autistic individuals; gastrointestinal (GI) disorders, which occur in up to 84% of autistic children; and seizure disorders—as many as one-third of autistic children have epilepsy.
It’s also important to be aware of the co-occurrence of mood and anxiety disorders (such as anxiety and depression) as well as ADHD; the symptoms might overlap and show up with some complexity. ADHD is one of the most common co-occurring conditions with autism: Studies show that between 30% and 50% of autistic individuals present with ADHD symptoms as well. Similarly, anxiety disorders affect an estimated 40% of children and teens with autism, which can also manifest as sleep problems, self-harming behaviors, resistance to change, or changes in sensory response. To read more about how to approach co-occurring conditions with autism, read our articles Autism and Co-Occurring Diagnoses as well as ADHD 101.
Seeking an autism diagnosis
After talking with a child’s caregivers, a pediatrician may recommend seeing a specialist who is qualified to evaluate and diagnose autism. Studies indicate that less than half of kids with autism are able to access early intervention, and a diagnosis can open doors for those services. Early diagnosis and intervention are recommended so that children with autism can receive the support they need to gain skills before starting school, including social skills training. Early intervention has also been shown to have long-term developmental benefits.
Dr. Kanne recommends that parents work with their pediatrician or primary care provider to screen their child for autism.
It’s important to keep in mind that children can be diagnosed with other conditions, such as ADHD or sensory processing issues, before autism is considered. A study conducted by Dr. Amir Miodovnik, a developmental pediatrician at Boston Children’s Hospital, showed that an initial diagnosis of ADHD delayed an autism diagnosis by up to three years. It also showed that children with ADHD were 30 times more likely to receive an autism diagnosis after age 6 than those for whom autism was their first diagnosis.
Autism may be overlooked for a number of reasons: different developmental rates, quick office visits, preference to treat co-occurring conditions first, wanting to wait-and-see, as well as biases in sex, gender, and race. Families should find a professional who is trained and experienced in diagnosing and treating autism, get second opinions, and find a support system. “It is okay to get a second opinion,” says Dr. Amin. “There's nothing wrong with saying ‘we're not quite sure how accurate the diagnosis is in this case.’” The wait-and-see approach can also mean waiting for interventions and therapies that would benefit the child if received sooner.
Read our article Diagnosing Autism to learn which professionals are qualified to do this, the diagnostic tools they use, and the pros and cons of seeking a diagnosis.
What happened to “Asperger syndrome”?
With the release of the DSM-5, the diagnostic label of “Asperger syndrome,” characterized as difficulties in communication and social interaction, was removed. The DSM-5 acknowledges that autism is a spectrum, which encompasses what we previously called Asperger syndrome. According to ADDitude Magazine, some children who would have previously been diagnosed with Asperger syndrome may now be given a diagnosis of Social Communication Disorder (SCD). Children with SCD have difficulties following verbal and non-verbal communication “rules” in social situations, but they don’t meet the diagnostic criteria for autism.
What kinds of therapies/therapists are recommended for autism?
While every child is different, some of the most common supports for autism include occupational therapy, behavioral therapy (such as ABA or alternatives to ABA), speech therapy, and social skills training. Depending on a child’s co-occurring conditions and specific symptoms, it’s important to focus therapy on what a child’s specific and unique needs are instead of the diagnostic labels. The types and settings that a family chooses for a child’s therapies should also be tailored to the child’s personality, age, strengths, and needs.
In this clip, Dr. Kanne touches on various therapeutic approaches for kids who have been diagnosed with autism:
Check out this article for a more comprehensive list of the professionals who may make up your child’s care team as well as the therapies they might recommend. Remember to look for professionals who are experienced in diagnosing autism, can answer your questions, and take all of your concerns seriously.
Involving extended family, siblings, and friends in a child’s therapy work can extend its efficacy throughout the day. This is especially important as a child learns to play and socialize in the world.
Another therapeutic tool to consider is technology. Assistive technology (devices, apps, toys, smartphones, tablets, etc.) can empower children with autism. They can provide a child with much-needed access to skill acquisition, create a safe space to practice and develop communication and speech, and serve as a refuge if a child feels overwhelmed or stressed in social situations.
How can parents fund their child’s medical and therapeutic needs?
It’s important to know that an autism diagnosis can open up options for therapies and services available through various public benefits programs. In addition to private insurance, here are some potential resources for funding early intervention therapies, behavioral therapy such as ABA, and more:
Note: Prior to age 3 , a formal diagnosis is not necessary to be eligible for early intervention services from Regional Center as long as the child is showing delays in certain developmental areas (see this article for eligibility criteria). After age 3, Regional Center eligibility requires both a formal diagnosis and significant functional limitations in at least three of the following areas: self-care, receptive and expressive language, learning, mobility, self-direction, and capacity for independent living and economic self-sufficiency (as appropriate based on the child’s age).
Sometimes, a child with Level 1 autism may be denied by Regional Center because their academic skills are “too advanced.” The implication is that someone who is performing well academically cannot be eligible for Regional Center services, but this is not accurate. Cognition and learning are only two developmental areas under consideration. A child with Level 1 autism who has strong academic skills may still struggle in a variety of adaptive areas. Additionally, a child may have varying strengths and deficits in different areas of cognition and learning. A proper evaluation for Regional Center eligibility should take all appropriate categories of development into consideration, and parents should prepare for the application process by documenting deficits in all areas of concern. Services you may want to explore might include social skills classes and social-recreational opportunities, independent living skills, adaptive skills training, behavioral therapy, and others.
See this article for our full guide to funding resources that may be available to pay for your child’s treatments and services.
What are some autism organizations where parents can find resources?
How can parents better support their children?
Support is rooted in awareness, acceptance, and advocacy. These are all things that parents can do within their families and communities in addition to teaching children to do them for themselves. And it's important to start early. Bias against kids with autism usually starts early on — as early as preschool sometimes. According to a recent study published in Exceptional Children, there is a high “frequency of expulsion” for kids with autism in day care settings – around one out of six preschoolers with autism get expelled from their preschool or childcare setting, usually around the age of three. The reasons are often behavior issues (aggression, creaming, biting, hitting and/or spitting) but an inability to pay attention, sit still, or follow directions are also cited.
The study showed that private schools were more likely to expel children with autism, indicating a need for “policies and practices supporting inclusion in private settings.” The researchers also gave their opinions on what needs to change, citing a need for early childhood educators to receive training in autism-affirming practices as well as building a more positive and warm relationship with young autistic children. One way parents can work to prevent this is to have their children screened for autism early on so that they can receive services and supports that would help them stay and engage more meaningfully in preschool and daycare.
In this article, Kim Sinclair, executive director of the Autism Society of Los Angeles (ASLA), and artist and advocate Rachel Kopito help us explore how to better celebrate neurodiversity and what parents can do to celebrate their children. We also explore the need for greater support in this article with Elissa Green Kaustinen, director of the Families, Agencies and Schools Together (FAST) program at the CHOC Thompson Autism Center.
To learn more about autism, check out our articles Diagnosing Autism, Autism and Co-Occurring Diagnoses, and Getting a Child with Autism the School Supports They Need.