Diversity, you know, is a description of the range of human nature. Having the specific label of ASD will not necessarily guide us in terms of treatment. The more important thing is to look at what specifically is hard and how to address that.
Nina-Sand Loud, MDAre you concerned that your child may have Autism Spectrum Disorder (ASD)?
The number of ASD diagnoses is increasing. But children with social, communication and interactive challenges—or even restrictive repetitive behaviors in motor movements like hand-flapping or intense focus on a specific interest—do not necessarily have the disorder.
“Just because they have some of those difficulties doesn't mean they have ASD or that they will get the treatment they need,” explains Nina Sand-Loud, MD, Developmental and Behavioral Pediatrician, Dartmouth Hitchcock Medical Center.
“Rather than focus on a diagnosis or a label, pay attention to strengths and difficulties in order to target supports,” she advises parents. “Sometimes people think, oh, to get any support, I need a diagnosis, but that's not true.”
A wide spectrum of challenges
Treatment of ASD is never one size fits all. The disorder has a range of challenges that extend across a spectrum.
That spectrum widened in 2013 when the American Psychiatric Association removed Asperger's Disorder along with Pervasive Developmental Disorder, not otherwise specified, from the new edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM).
The new overarching DSM-5 diagnosis became Autism Spectrum Disorder and Aspergers was no longer a separate diagnosis.
“They were trying to make it clearer and I think in their attempts to make it clearer, they made it less clear, which sometimes happens,” says Sand-Loud.
Pluses and minuses of more diagnoses
Since then, the Centers for Disease Control and Prevention has reported a spike in diagnosis, with one in 36 children having the disorder in 2023, as compared to one in 68 among children aged eight in 2012.
The non-profit advocacy group Autism Speaks says the rise reflects an improvement in outreach, screening, and the de-stigmatization of autism diagnosis among minority communities.
But some warn that children who struggle most are now at risk of not receiving the level of services they need.
“As the diagnosis has expanded some with more profound challenges have been somewhat pushed to the corner. That is unfortunate because those are often families that really need a lot of support,” says Sand-Loud.
In addition, she says, those tasked with diagnosing the disorder can struggle to keep up with the growing demand.
“Things have become very challenging because of the numbers seeking out evaluations,” says Sand-Loud.
What else is behind the rise
Opinions vary on the reasons for the increase.
Autism numbers actually have been rising for some time. The CDC reported that in 2000 the autism rate among children was only one in 150, much lower than current numbers. Environmental factors, improved outreach, and raised autism awareness are among the theories for the spike.
Sand-Loud observes: “Something has happened in terms of ASD starting to become a bit of an identity.”
Insurance, too, may play a role in a parent’s push to get their child a diagnosis. Most states require that insurers provide coverage for the treatment of ASD and insurers often demand that a child have a diagnosis to get coverage for Applied Behavior Analysis (ABA), a mostly one-on-one treatment approach based on understanding behaviors and how they are affected by the environment.
But Sand-Loud stresses that a child without an ASD diagnosis still can get support through schools or early intervention programs based on their specific areas of need.
“People are putting a little too much focus on labels,” she says. “Everybody can have their differences. It's when those differences cause problems that we need to focus on them more.”
In fact, if Sand-Loud could wave a magic wand, she would do away with labels and focus efforts instead on treating specific challenges.
“Children do not need a diagnosis to receive support,” she says. “And just because you have a diagnosis of ASD doesn't automatically mean that the school needs to provide support. You have to have an area of specific weakness. If, for example, a child has some language delays, schools can provide speech and language therapy. Or they can get services in a specialized preschool program.”
Where to start
If you are worried that your child could have ASD, Sand-Loud recommends that you begin by identifying your child’s challenges.
Ask yourself what specifically in your child’s development and behavior concerns you and what you have observed. Then, raise those concerns with your child’s pediatrician or primary care clinician.
Also talk with your child’s school or an early intervention program (if your child is before preschool age) to get an evaluation.
In fact, developmental and behavioral pediatricians such as Sand-Loud ask that children get these evaluations before they assess a child. That’s because that information contributes to understanding a child’s needs.
Initiating a school or early intervention program evaluation also means a child may be able to start treatment during the wait for an appointment.
“We don't want a two-and-a-half-year-old waiting six months to see me before they get services. That's wasting valuable time. We know that 0 to 5 the brain is ready to go and so we want to get those supports into place. The goal of any diagnosis is to get support,” Sand-Loud says.
How a specialist determines an ASD diagnosis
If you and your pediatrician decide your child needs an evaluation by a developmental and behavioral pediatrician or a neuropsychologist, your child will need to meet diagnostic criteria to be classified as ASD. These criteria include persistent deficits in each of three areas of social communication and interaction, plus at least two of four types of restricted, repetitive behaviors, according to the DSM.
To make a diagnosis, a provider will evaluate your child’s development history, skills, behavior, and other criteria. Included in your child’s assessment may be:
- An assessment of your child’s social interaction, communication skills, and behaviors
- Hearing, speech, language and other skill tests
- Evaluations by additional developmental specialists, which may include those from intervention programs
- Consideration of family histories and genetic tests
- Parental observations
“There isn't one way to make a diagnosis. We can't do an X-Ray, or a blood test. We think about how children are doing at home, how they're doing in school, how they're communicating, how they're engaging, and how they're playing. We put all the pieces together to make the diagnosis based on all of those factors,” says Sand-Loud.
Sand-Loud also says no age is too young to bring up your concerns with your child’s pediatrician and that early intervention can make a difference.
The American Academy of Pediatrics (AAP) recommends that regular developmental and behavioral screening begin during regular well-child visits at nine months. The average age of diagnosis is close to 5 years old but parents report putting together a plan for early intervention or special education at 4.3 years of age.
If your child is diagnosed with ASD
Because ASD has such a wide spectrum, the range of home-based and school-based treatments and interventions varies and can change over time.
An ASD treatment and intervention strategy may include:
- Behavior and communication therapies. These may include ABA.
- Educational therapies. These may take place at home, school, or in another location.
- Family therapies. Parents and other family members can learn to help promote social interaction skills, manage problem behaviors, and teach daily living skills and communication.
- Additional therapies. These might include speech therapy to improve communication skills, occupational therapy to teach activities of daily living, and physical therapy to improve movement and balance may be beneficial. A psychologist, too, can recommend ways to address problem behavior.
But again, Sand-Loud stresses that your child doesn’t need to have an ASD diagnosis for intervention and she remains concerned about the implications of the rising numbers.
“There is a researcher in Montreal at Universite De Montreal who says that if diagnoses get much higher, let's just say ASD is a universal diagnosis,” she says.
“Diversity, you know, is a description of the range of human nature,” she points out. “Having the specific label of ASD will not necessarily guide us in terms of treatment. The more important thing is to look at what specifically is hard and how to address that.”