At this point, researchers believe that roughly 1 in 31 8-year-old children has ASD. When a child is newly diagnosed with ASD, they are typically assigned a “level” somewhere between 1 and 3. These levels come from the Diagnostic & Statistical Manual for Mental Disorders (DSM) and help care providers to create a more customized long-term support plan for the child and their family.
Due to a wealth of misinformation about ASD and correlating levels, the news can feel very confusing to parents and caregivers in terms of what these levels actually mean and what types of support are best for the child to thrive at home, at school, and in their community. We want to set the record straight: your child’s level does not reflect how autistic they are.
These levels simply reflect where support is most needed to help them in their daily life with regard to two specific “domains.” It’s also important to understand that these levels are not fixed, like a sentence. Rather, the levels depict a snapshot of where your child is now and which areas could be better supported to help them learn and grow.
Autism spectrum disorder is a neurodivergent/neurodevelopmental diagnosis determined by two core areas: observable and consistent differences in social communication and social interactions, and restricted or repetitive patterns of behavior and interests.
The ASD levels assigned to your child (for now) directly correspond to these two core areas or domains:
For many parents, these social/communication challenges or restricted/repetitive behaviors were the first signs their child may have ASD, leading them to seek a diagnosis.
ASD levels should not be used by parents or anyone else to determine that a child is high- or low-functioning. In fact, these labels have been dropped because they instilled the idea of a “fixed” state of being, an idea that current research has debunked.
Instead, these fluid-level categories help parents/caregivers, teachers, behavioral therapists, and other professionals understand which areas a child struggles most and which support services or interventions would best serve them.
The three levels at a glance:
| Level | Official Label | What it means in practice |
|---|---|---|
| 1 | Requiring Support | Challenges are noticeable in less structured settings. A child may struggle to initiate social interaction, switch between activities, or adapt to unexpected changes. |
| 2 | Requiring Substantial Support | Differences are apparent even with support in place. Speech and nonverbal communication are markedly affected. Behavior inflexibility is visible to most observers. |
| 3 | Requiring Very Substantial Support | Significant difficulties in social communication, possibly nonspeaking or with limited functional speech. Restricted/repetitive behaviors markedly interfere with daily life across all settings. |
Keep in mind that a child may be a Level 1 in social communication but a Level 2 in restricted or repetitive behaviors (not uncommon if they struggle with high social anxiety or have a hard time getting interested in anything outside their own preferences).
Again, these levels should be viewed as fluid markers of where a child is at and where they are headed with the right interventions and support in place.
Here is a general description of each level and what it means in terms of the types of support that would benefit your child.
A child with Level 1 may be just fine in structured environments, but certain behaviors emerge or intensify without structure or their usual comforts. Children who are Level 1 both socially and behaviorally are the most likely to be under- or misdiagnosed. This is especially true for girls, who are categorically underdiagnosed and often miss out on the opportunity for early intervention and support.
Children at Level 1 can “fit in” fairly well with their peers, and adults may even find them charming and preciocious. If there is an ASD diagnosis, their easier nature or “mild symptoms” may lead caregivers or teachers to believe the child doesn’t need extra support. However, this is not fair to the child, as they are frequently experiencing significant internalized stress or anxiety that others don’t see.
The types of support most needed at ASD Level 1 are:
Prior to the DSM-5, children determined to have Level 1 ASD were often diagnosed with Asperger’s, but this label has fallen by the wayside as we’ve become more fluent in neurodivergent diagnoses.
A child with a Level 2 label has differences in the communication or behavioral domains that are observable even with the first rung of support. Even so, this Level has no bearing on a child’s future abilities. In fact, studies consistently show that early diagnosis and consistent, high-quality interventions and therapies can result in a child moving up through the Levels over time.
The most common types of support used to help children categorized with ASD Level 2 are:
Do not let the word “substantial” alarm you. It is just an indicator that your child will need a higher level of support and may need it more consistently than a child at Level 1. It is not a judgment of their current or future potential.
Unlike Level 1 behaviors, which can go unnoticed by adults outside the household or classroom, Level 2 behaviors are more apparent in the public arena. For example, it may even be a grandparent, gym coach, or close family friend’s observation that prompts families to seek evaluation by a pediatrician or an ABA therapist.
A child who is Level 3 in the social/communication or behavioral realm will need a significant level of outside support throughout their day. In most cases, these children are minimally or completely non-verbal. However, adults and peers should never equate non-verbal with low IQ. An intelligence quotient (IQ) test is a completely different evaluation. And, due to the modalities required to administer the majority of standardized tests, the cognitive abilities of children with ASD have been consistently undervalued.
The more innovative we’ve become with communication tools, the more we’ve realized just how much is going on inside the minds of many non-verbal children with ASD. This is why we advocate that all parents/caregivers and teachers always presume competency with their ASD child.
Children categorized with Level 3 ASD may also display more intense reactions to stress or sensory overload, including heightened stimming or more reactive/violent outbursts (with higher risks of doing inadvertent harm to themselves or others).
The most common types of support used for Level 3 ASD are:
Again, we can’t reiterate enough that just because a person cannot talk or express their feelings in ways that others understand, this does not mean they don’t have feelings. The goal of Level 3 ASD support is to honor the whole child and do all we can to bring their thoughts, feelings, and abilities to the forefront as much as possible.
ASD levels can and do change over time, and with personalized intervention and supports in place. According to recent research, 29% of children who receive early intervention and support experience notable decreases in severity scores throughout their childhood. Roughly 54% of children remain the same.
It is clear that early and consistent intervention is one of the most significant factors for children who move up in their Level(s). The more we learn about ASD and other neurodivergent diagnoses, the more innovative our approaches. Periodic reassessments are essential for establishing clear benchmarks in a child’s development and for keeping their support systems relevant to their immediate needs.
An ASD diagnosis and a DSM-5 Level assessment are only the beginning. With that information, a support plan can be put into place. The basic steps from diagnosis to plan implementation include:
Currently, applied behavior analysis (ABA) therapies are the standard, evidence-based, first-line interventions recognized by the AAP.
We understand your overwhelm after receiving an ASD diagnosis, especially if the Level number requires more support than you were anticipating. We also assure you that this is only the beginning of your journey and not the end of the story.
The Autism Response Team (ART) works with children at all three levels of ASD across four North Texas Locations. Your child will receive an individualized assessment that goes layers deeper than a diagnostic level, identifying where they are right now. We assure you that once ART is on the scene, you and your family will experience immediate relief and the reassurance that there is a bright light at the end of the tunnel.
Contact the Autism Response Team for a free consultation at one of our four North TX Locations (Tyler, McKinney, Prosper, or Celina) to bring a new sense of ease, hope, belonging, and joy back into your child’s life.
