When Aimee Karpien adopted her son, Henry, at 18 months old, she immediately suspected he had developmental delays and sensory processing challenges.
“We quickly pursued evaluation through early intervention, understanding there would likely be a wait to receive evaluation and home services,” says Karpien, who lives in Rochester, New York. “We began therapy at 22 months, but he did not receive a diagnosis of autism until he was 3 and a half years old.”
Although it wasn’t easy to learn her son had autism spectrum disorder (ASD), Karpien’s fast action helped Henry receive therapies as soon as possible.
“It can feel very isolating when your child faces challenges that are outside the scope of the typical childhood experience,” Karpien says.
But she advises parents that it’s important not to fear a diagnosis.
In addition to better screening and diagnosis, many children — like Henry — are benefitting as we learn more about autism, its causes and treatments.
[Read: How to Help Kids With Anxiety.]
What Is Autism?
Autism spectrum disorder is a neurodevelopmental disability that impacts how people communicate, learn and interact with the world. Spectrum refers to the wide range of symptoms and severity.
“Autistic people are a diverse group with a range of needs,” says Dr. Doreen Samelson, an autism researcher and chief clinical officer at Catalight Research Institute in California. “People with severe autism may need constant care, while others with subtle forms of autism lead very independent lives.”
Some autistic people may be intelligent and speak fluently (what used to be called “high functioning autism”), while some may be nonverbal, exhibit additional behavioral traits, such as pathological demand avoidance (PDA) autism, or have other disabilities.
An autistic person or a person with autism?
Some advocates refer to autistic people as “people with autism,” putting the person before the condition. But experts say most autistic people prefer to be described as an “autistic person” because autism is a part of their identity, not a detriment or condition to be fixed. Autism Speaks, an autism advocacy group, recommends using the language that feels most comfortable to the person on the spectrum.
[Read: CBD Oil for Autism.]
What Are the Signs and Symptoms of Autism in Children?
Babies and toddlers with autism show differences in their social communication and interaction. They may:
— Not smile back at you
— Make less eye contact
— Not share interests, such as pointing or showing you a toy
— Not attend to you when you try to get their attention
— Have speech and language delays
Children with autism also have differences in how they react and interact with people and their environment. They may:
— Not interact socially or readily engage with others
— Seem disinterested in or uncomfortable with social interaction
— Have repetitive play patterns or play with toys in unusual ways, like stacking toy cars
— Engage in repetitive body movements, like hand flapping or spinning
— Be more sensitive to lights, sounds and textures
— Be intensely focused on particular interests
— Insist on doing the same activities repeatedly
— Difficulty with transitions or changes in routine
— Not want to be touched
Because ASD is such a broad spectrum, signs can look different between children and can make it hard for doctors to detect subtle signs of autism in very young children.
In addition, symptoms can look very similar to those of other conditions, such as learning disabilities, hearing impairment or attention-deficit/hyperactivity disorder, Samelson says, so doctors have to consider all the possibilities.
[READ: Navigating Medicare: Special Needs Plans and How They Can Help]
How Is Autism Diagnosed?
An autism diagnosis can be made by a trained specialist, such as a:
— Developmental pediatrician
— Psychologist
Typically, your child’s doctor will interview a parent or caregiver, review their medical history, observe their behavior and conduct standardized testing.
Some autism screening tools doctors use include:
— Ages and Stages Questionnaires (ASQ): Parents fill out a questionnaire on their child’s general development to be reviewed by your child’s doctor.
— Screening Tool for Autism in Toddlers and Young Children (STAT): Doctors lead children in 12 activities that assess play, communication and imitation skills; this takes about 20 minutes.
— Modified Checklist for Autism in Toddlers, Revised with Follow-Up (M-CHAT-R/F): Parents complete this checklist of autism symptoms to be reviewed by a doctor.
Sometimes brain imagining tests, such as a CT scan, MRI or PET scan, may be ordered.
Although a medical autism test doesn’t exist, doctors do have specific criteria for a diagnosis. This includes two factors: problems with social communication and interaction, and restricted or repetitive behaviors or interests — both of which must be present.
For Henry, who worked with the Developmental and Behavioral Pediatrics unit of the University of Rochester Medicine, the evaluation was easy.
“As far as our son was concerned, the diagnosis process simply consisted of various individuals attempting to play with him. It was very relaxed,” Karpien says.
Importance of Early Diagnosis
Diagnosing autism at a young age is ideal because it allows children to access services and therapies for developing helpful life skills early.
“During early childhood, the brain is still developing and changing very rapidly,” says Dr. Emily Knight, a developmental and behavioral pediatrician at University of Rochester Medical Center. “When we identify autism early, we have a great opportunity to provide early supports and interventions. These can give children the best possible start in building skills so they can reach their fullest potential.”
Doctors have gotten better at diagnosing autism, which may be partly why rates of the condition have increased so much in the past 20 years. According to the latest Centers for Disease Control and Prevention research, the prevalence of autism is now 1 in 36 children, up from 1 in 59 in 2014 and 1 in 125 in 2004. The majority of cases occur in boys, as ASD is almost four times more common in boys than girls.
But diagnosing children early also presents challenges, both for parents and doctors.
“In some parts of the United States, there are long waiting lists for a diagnostic evaluation that can last months or even years,” Samelson says. “For families, it can be very distressing to be stuck on a long waitlist during their child’s critical development years.”
Although children under the age of 2 can be diagnosed, most children are close to school age when they receive an official diagnosis, she says, in part because of this limited access.
Still, if you suspect your child may be showing signs of autism, get them evaluated now.
“It is best to raise these concerns early rather than take a ‘wait and see’ approach,” adds Knight.
What Therapies Are Available for Autism?
Children with autism benefit from social skills, communication, motor and/or sensory supports tailored to their individual strengths and skill-building needs. This might include:
— Speech therapy
— Occupational therapy
— Special education
“These approaches all teach skills that can help children on the autism spectrum navigate the world effectively,” Knight says.
For Karpien, she pursued the Developmental, Individual-differences and Relationship-based (DIR) Floortime Model of Intervention, which highlights the importance of relationships with respect to the way individuals perceive the world.
“We were a new family, so growing our son’s security in his new life was paramount to us,” Karpien says. “DIR is a wonderful, child-centered model that taught us how to engage with our son.”
Through the DIR lens, Henry received speech, occupational therapy, physical therapy, music therapy and special education services.
How autism treatment is changing
In recent years, autism treatments have focused on what best helps patients’ quality of life.
“Improving well-being for an autistic child and their family should be the focus of any intervention,” Samelson says.
In the past, many interventions focused on goals that did not improve well-being, such as stopping autistic children from hand flapping or asking the child to make more prolonged eye contact.
“Why? These aren’t dangerous behaviors,” Samelson says. “For many autistic people, hand flapping can be self-soothing, and some autistic people find eye contact difficult.”
The “why” was, in essence, to make neurotypical people more comfortable around autistic people.
“Interventions are increasingly shifting their focus from trying to make autistic people look more like non-autistic people, to adjusting the environment and other people’s perceptions about autism so that autistic people can be better accommodated,” says Kristen Bottema-Beutel, director of the Autism Spectrum Disorder Certificate program at Boston College.
We don’t expect people in wheelchairs to walk up stairs; we build an access ramp.
“Rather than training autistic people to use normative social skills such as making eye contact, an interventionist might teach parents to learn about their autistic child’s communication styles and respond to their autistic child in ways that their child might more readily understand,” Bottema-Beutel says.
Neurotypical people are beginning to appreciate the value and diversity of perspective autistic people bring to our communities, Knight says.
“The goal of early intervention for autism is not to teach children to simply look or act ‘more neurotypical’ or ‘less autistic,'” she says. “Interventions should emphasize a strengths-based model that focuses on meeting a child where they are at, and helps build meaningful skills to support the next stages in development.”
The applied behavior analysis controversy
A generation or two ago, autism treatment methods weren’t always caring or compassionate. Specifically, an approach called applied behavior analysis (ABA), which utilizes a rewards-consequences system, has been criticized. Early versions of ABA in the 1960s and 1970s employed electric shock, food deprivation and other inhumane methods.
“ABA has traditionally been implemented with the goal of making autistic people look more like non-autistic people, which is an ableist goal. It assumes it’s better to be or appear to be non-disabled than disabled,” Bottema-Beutel says. “Many autistic people describe being traumatized by participating in ABA as children.”
Today’s ABA has improved, with certified, ethical therapists using more positive reinforcement in natural or play-based environments.
“ABA therapy has changed over the years to adapt to changes in research in understanding its effectiveness,” says licensed clinical social worker Alisha Simpson-Watt, executive clinical director and founder of Collaborative ABA Services in Connecticut. “The overall goal of ABA treatment is to improve the lives of individuals in a socially significant way.”
For some autistic people who harm themselves or others, ABA can be a literal lifesaver. Treatment goals may aim to reduce behavior such as aggression, self-injury or running away, and replace it with social skills, language and communication, emotional regulation and safety skills.
However, ABA often requires a large amount of time, up to 40 hours a week — and that isn’t always best, Samelson says.
“Many practitioners believe more treatment equals better results,” Samelson adds. “In my clinical experience, high hours can be difficult for young children and disruptive to families, and we see good outcomes with much lower hours.”
Research backs this up: A June 2024 meta-study in the journal JAMA Pediatrics found no significant association between the amount of intervention and improved outcomes. Although ABA is the treatment most readily covered by insurance, it’s not the only autism treatment available.
Samelson suggests another approach: Training parents and caregivers to incorporate intervention strategies into their parenting routine, so there’s less time spent at appointments.
“Interventions led by parents provide good outcomes and reduce stress,” she says. “Autism care is moving away from one-size-fits-all interventions to more flexible options that fit individual families.”
[Read: What to Do If Your Child Is Diagnosed With a Rare Disease.]
Causes of Autism
While the exact cause of autism is not known, experts believe that it may be caused by certain genes.
Is autism genetic?
Parents often wonder why their child has ASD, but we’re still learning more about what causes autism and if autism is genetic.
“Genetics seems to play a very important role. There are many gene changes that are associated with an increased likelihood of autism,” Knight says. “Research is ongoing to understand how genes interact with events during pregnancy and early infancy to influence a child’s developmental path.”
There’s definite evidence of a familial component to autism. A 2024 study found that siblings of autistic children have a 20% chance of having autism, about 10 times greater than a child without an autistic sibling.
Autism and vaccines
One thing we know for absolute certain is not a cause of autism: vaccines.
“We do know from multiple very high quality research studies that vaccines do not cause autism. Instead, vaccines help to prevent many illnesses that cause negative health and developmental outcomes,” Knight says.
How Parents Can Support Their Autistic Children
Viewing autism as a natural variation in brain function and autistic children as needing support instead of a cure can help parents more positively respond to a diagnosis and affect how children view themselves.
“Parents play an enormously important role. They can shape their children’s feelings about being autistic, and encourage them to view autism as a valid way of being with strengths and challenges — just like any other way of being,” Bottema-Beutal says.
Parents can help by rejecting ableism and accepting their kids for who they are. In addition, parents can also support their children by learning about autistic communication, preferences and support to help them access learning environments and experiences that work for them. This is important because schools, museums and other educational institutions are not generally designed with autistic people in mind.
This was the case for Henry, who is now 14 and in a specialized class. (The Americans with Disabilities Act and Section 504 of the Civil Rights Act can help protect children with special educational needs. Talk with your child’s teacher or school principal for more information.)
“It took several years to find the best educational environment for our son, but he is currently thriving,” Karpien says.
Set realistic goals
Autistic children’s developmental trajectories may look different from non-autistic people — and that’s OK. Although the media often presents very successful autistic people, parents should set attainable goals for their children.
“I encourage families to help their child achieve a successful life that’s tailored to their unique needs and abilities,” Samelson says.
Parents should talk through the options with their doctor to decide which approach best fits their family, but they need to find support for themselves during their child’s journey, too.
“It is important to find a community that ‘gets it,’ so join support groups, ask for help when you need it and look for joy,” Karpien says. “No diagnosis will ever diminish the love you have for your child. Your child is your child no matter what.”
More from U.S. News
Ways to Finding the Right Mental Health Counselor
What Is Neurofeedback Therapy?
11 Tips for Your First Mammogram
What to Know About Autism in Children originally appeared on usnews.com
