Autism Spectrum Disorder: Level 3 

This article aims to provide a comprehensive understanding of what a “level 3” diagnosis of autism spectrum disorder means. We’ll explore common signs, how families can use this information to support their child’s development, and how an autism level 3 diagnosis fits in with the neurodiversity-affirming perspective.

Understanding Level 3 Autism: What It Means for Your Child and Family

Hearing that your child has an autism spectrum disorder diagnosis can lead parents to feel a wealth of emotions. Hearing that your child has a level 3 autism diagnosis can lead to even more confusion. Oftentimes, families wonder if a level 3 diagnosis means that their child has “severe” autism or if their child will grow up to be independent. If you are a family member whose child just received a level 3 autism diagnosis, we are here to offer some clarity on what that means for your child and your family. 

What the DSM-5 Says About Autism

Recall from an earlier blog post that the DSM-5 is a book used by medical professionals to describe various developmental and mental health conditions. In the DSM-5, autism is referred to as Autism Spectrum Disorder (ASD). The word “spectrum” here reflects the different ways in which autism can present. That is, no two autistic people are alike, and each person’s strengths and preferences are unique, as are their challenges and support needs.

The DSM-5 defines autism based on two main features:

1. Differences in social communication and social interaction
   This might look like challenges with things such as engaging in back-and-forth conversations, using and understanding body language or tone of voice, or making and maintaining friendships. These differences don’t mean that a child can’t or doesn’t want to connect with others; they may just connect with the world in ways that look different from how people typically connect.

 

1. Restricted, repetitive patterns of behavior, interests, or activities
   This can look like repeating words (often called echolalia) or movements (such as hand flapping or twirling), having focused interests in certain objects, topics, or activities (like dinosaurs, trains, Minecraft, Bluey, creeks), and preferring routines that are structured and predictable.

Because autism shows up differently in everyone with a diagnosis, each person will require unique and individualized supports. For that reason, the DSM-5 introduced support level descriptors. These levels help to loosely categorize people on the autism spectrum by how much support they may need to function in their daily lives. There are currently three levels of support, ranging in intensity.

• Level 1: Requiring some support

• Level 2: Requiring substantial support

• Level 3: Requiring very substantial support

What Does Level 3 Autism Mean?

When a person has a Level 3 autism diagnosis, this means that they require “very substantial support” in their everyday lives. This means that they tend to rely on others (e.g., caregivers, educators, support staff) to meet their communication and adaptive functioning needs on a daily basis. Common characteristics in level 3 autism may include the following: 

• Social communication: Children with Level 3 autism may use very few spoken words or may not use spoken language at all. They might communicate through alternative methods such as pictures, objects, or speech generating devices. They may also not show much interest in social interaction. For example, initiating interactions (through play or conversation) and engaging in back-and-forth conversations is difficult. This is often true even when the person has the appropriate tools and support systems. 
• Restricted and repetitive behaviors and interests: Children with Level 3 autism often exhibit a strong desire for routines, which can include engaging in repetitive behaviors. For example, a child may line up all of their toy cars in the exact same order every time and become distressed if you attempt to line them up in a different way. Additionally, changes in their normal daily routines (such as when Dad instead of Mom has to bring them to school) can be overwhelming. Sometimes, children with Level 3 autism may seem to engage in repetitive movements (such as rocking back and forth) or vocalizations (such as saying “ahhhhhhh” for prolonged periods) as calming strategies.  

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What a Level 3 Autism Diagnosis Doesn’t Mean

Despite the need for substantial support, a level 3 autism diagnosis does not mean that your child is less of a human being worthy of happiness, support, and relationships or that they are unable to learn. Children with level 3 autism can learn new skills, including communication, when they are given the right tools and support. These supports build on your child’s strengths and are individualized to fit with your family structure and goals. Many times, a child’s focused interest develops into skills that are remarkable (such as musical talents or computer coding).

How Families Can Use This Information

A Level 3 diagnosis can be overwhelming, confusing, and sometimes leave families feeling alone and unsupported. There are many supports and resources available for families that not only aim to support a child’s learning and development, but also connect families with other families and support services for their own well-being. 

Therapies for children include speech language therapy, applied behavior analysis (ABA) therapy, occupational therapy, physical therapy, counseling, and tailored educational supports. Many professionals in these areas are trained to work with children with complex needs through a team approach. Specifically when thinking about a child’s communication skills, speech pathologists often recommend children use augmentative and alternative communication (AAC) methods, such as speech-generating devices, to communicate. AAC systems provide children with limited verbal speech to communicate their wants and needs, as well as connect with others using language.

Families may also wish to receive support for themselves, and this is totally natural. Many families seek out resources like respite care, support groups (either online or in-person), and community programs that support autistic individuals and their loved ones. 

Level 3 Autism Through a Neurodiversity-Affirming Perspective

Regardless of what level autism diagnosis a person has, having an autism diagnosis is not “bad” and is not something to be “fixed.” Each child and person with autism is unique and shows up in the world with their own individual strengths and contributions to society. It is important to honor each person’s uniqueness and individuality. Some ways that we can do that include

• Celebrating non-speaking communication (such as AAC-use, gestures, body language) as equally valid as spoken words
• Recognizing that repetitive behaviors (like hand-flapping) can be communicative and/or a form of self-regulation

Respecting routines and sensory needs instead of forcing the person to conform to what we believe is “normal”

FAQs

 

Is Level 3  autism the same thing as “severe autism”?

Level 3 autism is described as someone with autism who requires “very substantial support.” This means that your child may need more help with communication, daily activities, and managing changes in routines. It certainly doesn’t define their worth, personality, or ability to have a full and meaningful life.

Does Level 3 autism mean my child will never talk or be independent?

Not necessarily. Some children with Level 3 autism do not use spoken language, while others develop speech later with support. Independence also looks different for every child. Many people with Level 3 autism learn daily living skills, and some may live with ongoing support. The diagnosis tells us what supports are needed now; it doesn’t predict the future.

How will my child communicate if they can’t use verbal speech?

Many children with Level 3 autism use augmentative and alternative communication (AAC), such as picture boards, sign language, or speech-generating devices. AAC doesn’t stop children from developing speech; in fact, it often helps. Most importantly, it gives your child a reliable way to share their wants, needs, and feelings.

What can I do as a parent to help my child with Level 3 autism thrive?

It is important to embrace your child for who they are by understanding and highlighting their unique strengths. It is also important to honor and support their communication, whether they communicate using words, gestures, signs, or an AAC device. Providing predictable routines and limiting the amount of uncertainty in a child’s life is paramount to them feeling safe, as well as sets them up for success.

Can the “level” of autism change over time?

Yes. Autism is lifelong, but the amount of support a person needs can shift as they grow, learn new skills, and adapt to new environments.