By John Loeppky | Published on Verywell Mind
Medically reviewed by Claire Eggleston, LMFT-Associate
Plus how to best support your little one after diagnosis
Being disabled means getting used to labels. Some are in regular use; some, like ‘handicapped’ and ‘special needs,’ have fallen out of favor; and some, like ‘neurospicy,’ are just plain fun. Many of us figure out that we’re disabled later in life or have it thrust upon us after a life-changing event. However, there is a significant societal pressure to be diagnosed before you can identify as disabled.
While I’m here to say that self-diagnosis is a valid entry point to obtain care and support, there are some indicators that can help families and care networks identify a child’s disability earlier rather than later. Autism, particularly in women and non-binary people, has historically been underdiagnosed, and the care systems set up for autistic people are as complicated as they are controversial.
Let’s dig into how signs of autism can appear in babies, what they are, and what supports are available for autistic children and their families. Plus, if you’re diagnosed late or trying to figure out if you are autistic, here’s hoping this article can make that path just a bit more accessible.
How Early Can Autism Be Detected in Babies?
The first definitive signs of autism, a neurodevelopmental disorder, are typically between the ages of 1 and 2.5 years old. Dr. Peter J. Chung, an associate clinical professor and medical director of the Center for Autism and Neurodevelopmental Disorders at the University of California-Irvine, says that this is largely because of the developmental milestone practitioners are looking for when they are providing a diagnosis.
“It’s really hard to make a diagnosis of autism before the age of 1 year,” says Chung. “I’ve done that very rarely. And part of that is because some children will actually show typical development up until a year of age or so and then may start to show signs of autism between the first 1 to 2 years of age.”
Challenges in Diagnosing Autism
Historically, many marginalized groups—including women—have been under- or misdiagnosed. Sharief Taraman, MD, who also works at U.C. Irvine and as an attending physician at Children’s Health of Orange County, says that he and his collaborators have repeatedly found that the way the U.S. healthcare system diagnoses autism is “broken.”
“It was broken because it relied on specialists who were using research tools that had been normalized on predominantly White males with affluent backgrounds,” explains Tamaran. “And so what was happening is kids, females, anyone from a minoritized background, Hispanic, African American, low socioeconomic status, they were getting missed, they were getting misdiagnosed, or if they got diagnosed, it was on average much later than their White male counterparts.”
Recent research suggests that rates of autism diagnoses are on the rise, with 1 in 36 now being diagnosed by age 8.1
Zoe Gross, director of advocacy at the Autism Self Advocacy Network (ASAN), says that medical professionals and parents can learn a lot from autistic adults.
“A lot of times, parents are very frightened when they’re getting an autism diagnosis, and they need to hear things that are not like everything’s rainbows and sunshine, but not like doom and gloom, either,” Gross says. “Like. ‘Your kid can still live a great life.’ That’s a really important message for people to hear.”
Related: 5 Signs of Autism That I Missed During Childhood, From an Autistic Psychologist
What Are the Main Signs of Autism in Babies?
There are two main diagnostic areas for autism:
- Social communication and interaction
- Restricted and repetitive patterns of behavior, interests, or activities.
In young children, that can manifest as a lack of pointing or not reacting when a family member calls their name, among other things.
Jaime Baquero, MD, a child neurologist with Kidz Medical Services, says that parents also often notice signs like a lack of babbling, skill regression, and a lack of consistent eye contact before they arrive in his office, This is often accompanied by less of what is called joint attention.
“Joint attention is the ability for a child to share an experience,” says Baquero. “For example, if they find something that is fascinating and find some shiny object or some toys, generally, the child is seeing them for the first time and then turns around, will go to the parent, and show them what they just found. And they [autistic kids] usually are not showing items, or sharing interests with the parents.”
There are two common diagnostic tools used for autistic kids: the Autism Diagnostic Observation Scale (ADOS) and the Childhood Autism Rating Scale (CARS). Practitioners who spoke to Verywell Mind for this story also point out that autistic children are often identified at their regular 18-month screening.
What Causes Autism in Babies?
While there is no definitive cause for autism, some research has found a genetic component—it’s commonly understood that if you have a close relative with autism, you are more likely to be autistic.
When it comes to autistic children, Taraman says that it’s important that parents and guardians focus on how they can support their child rather than worrying about why they are autistic.
“I try not to have parents focus on cause or reason, although… if there is a diagnosis of autism, we do try and look at genetics because it may influence treatments,” explains Tamaran. “And then really, the focus needs to be on, how do you support the best quality of life for the child?”
What Doesn’t Cause Autism
A once-proposed cause for autism that’s since been ruled out is that it stems from vaccines, based on a flawed study done in the late ’90s by physician Andrew Wakefield. Wakefield’s study suggested that the measles virus triggered inflammatory lesions, which caused autism. This theory, among others, was later debunked and discredited for severe research misconduct and falsehood.4
Chung says that he believes vaccines and similar medical misinformation have stayed a stubborn myth because of a desire to assign a reason for a jarring diagnosis. This, combined with the fact that those first clear signs of autism align with the timeline of a typical course of childhood vaccines, distracts from Chung and his peers’ central focus: getting children with autism the support they need.
“We know that the child has autism; it’s better to focus on what to do next. Because the early intervention, especially in the first five or six years of the child’s brain development, can make a lot of differences, especially in the trajectory of the child over time. And the more intensive the services, the better the outcome seems to be.”
One key point Chung and his colleagues make to parents is that they are not the reason for their child being autistic.
“I do sort of stress to the parents that ‘It’s nothing that you did or didn’t do that caused your child to have autism,’ adds Chung. “We probably think it’s mostly genetic, with maybe some environmental triggers, but we don’t know what that is. And until we have more scientific research to really help us determine, that’s more of a public health question. My concern is really about the child that’s in front of me.”
“I try not to have parents focus on cause or reason, although… if there is a diagnosis of autism, we do try and look at genetics because it may influence treatments. And then really, the focus needs to be on, how do you support the best quality of life for the child?”
— SHARIEF TARAMAN, MD
Related: AuDHD: When Autism and ADHD Co-Occur
What to Do If a Child You Care for Is Autistic
Practitioners and self advocates agree that the first step once diagnosis has been secured, and even before, is to find supports.
Dr, Chung says that there are a myriad of options to find supports, with children and their families most often being directed towards options within the legal system like the Individuals with Disabilities Education Act (IDEA) or the Autism CARES Act, both of which allow for increased funding and legal provisions for financial support. Other areas for support are early intervention agencies in each state as well as each child’s school as they reach the age where those supports become necessary.
For More Info
Other options including searching out relevant recreational programs, seeking out university-level resources if they are on an academic path, and making contact with autistic self-advocates in your area, whether that’s through organizations like the Autism Self Advocacy Network or the wide range of independent living centers that exist throughout the US.
One of the most common approaches to supporting those with autism is applied behavioral analysis (ABA), an umbrella term for a set of treatment options. ABA has a complicated history, however, with many self-advocates and autistic adults labeling it a form of torture. Studies also show that it has caused PTSD for many people in the autistic community. Some interventions used with autistic children have also been banned.
In finding supports for the autistic person in your life and avoiding potentially traumatic options, it’s important to make sure that they match up to the needs and wants of the person you are supporting.
While Taraman isn’t necessarily anti-ABA, he believes that there are ample opportunities for supports, including vital early-stage ones, that focus less on correction and more on comfort and care.
“If the behavior is not harmful, so for example, lining up items can be seen as a behavioral feature. If it’s not causing distress to the child, I don’t really care,” Tamaran explains. “If the child isn’t getting upset about the toys being out of line or something, that’s not a thing that you need to necessarily address.”
Gross says that one key message to parents, even if the diagnostic journey may be a terrifying one, is that all is not lost.
“It’s difficult to have a disability in this world, but that doesn’t mean that you need to grieve for your child,” says Gross. “Your child is still right there, they’re still the same person they always were; they can still be healthy.”
Support for Parents of Autistic Children
According to the Individuals with Disabilities Education Act (IDEA), autistic children are eligible to get certain free or low-cost services to help build skills and manage needs. These services include physical therapy, occupational therapy, speech therapy, medical evaluations, augmentative and alternative communication (AAC) devices, and other services.
If you suspect your child is autistic or has other developmental challenges but hasn’t gotten a diagnosis, the IDEA allows children under 10 to benefit from these services.
