Understanding Your Child's Autism Diagnosis: Making Sense of the Levels

The concept of assigning levels to autism spectrum disorder (ASD) diagnoses emerged as an alternative to the previous labels of "low" or "high" functioning in 2013. These levels, ranging from 1 to 3, were designed to provide a more nuanced understanding of individuals' support needs. However, it's essential to recognize that these labels, like any classification system, have limitations, especially considering the complexity of human behavior and the individual variability among people with autism.

The Levels of Autism

Level 1 Autism: Requiring Support

Individuals classified at Level 1 typically require some support in navigating social situations and daily activities. While they may exhibit challenges in social communication and repetitive behaviors, they can often function independently with the appropriate support and interventions.

Many of these children, classified at Level 1, are the ones we would have traditionally just labelled as quirky or "temperamental kids". In the past, before the emergence of autism spectrum disorder (ASD) levels, many of these children would not have received an ASD diagnosis but instead would have been labelled as having "sensory processing disorder," "pervasive developmental disorder (PDD)," or "Asperger syndrome."

Often, children with level 1 autism may not naturally exhibit certain social skills, but with some explicit instruction and support, they can adapt their behavior, especially when motivated to do so. Strategies such as using social stories, which provide clear explanations of social situations and expected behaviors, can be particularly effective in helping these children navigate social interactions. Additionally, implementing visual supports like timers or schedules can aid in promoting predictability and reducing anxiety, thereby supporting emotional regulation. By understanding and addressing their unique needs, caregivers and educators can create environments that facilitate the development of social skills and emotional regulation in children with level 1 autism.

Parents of children with level 1 autism may find themselves navigating challenges related to inflexibility, emotional regulation, and sensory issues. While these children may be highly verbal, they often encounter difficulty discussing how they feel or articulating their experiences in social interactions. This can pose a unique set of challenges for both the child and their caregivers.

Inflexibility may manifest in rigid adherence to routines or difficulty transitioning between activities, leading to frustration or meltdowns when faced with unexpected changes. Emotional regulation can be a struggle as well, with children experiencing intense emotions that may be overwhelming to manage without appropriate support and guidance. Sensory issues further compound these challenges, as children may be hypersensitive or hyposensitive to sensory stimuli, leading to discomfort or distress in various environments.

Despite these obstacles, children with level 1 autism often demonstrate a strong desire to connect with others and participate in social interactions. By providing them with tailored support and implementing strategies such as social stories, visual supports, and sensory accommodations, parents and educators can help these children build essential skills for navigating social situations and regulating their emotions effectively.

Some still argue that this classification is merely a neurological subtype and not a "disorder" at all. Despite this debate, individuals at Level 1 typically require some support in navigating social situations and daily activities. While they may exhibit challenges in social communication and repetitive behaviors, they can often function independently with the appropriate support and interventions and are often successful without much support in school settings.

Level 2 Autism: Requiring Substantial Support

Individuals classified at Level 2 of the autism spectrum often exhibit more overt behaviors that are commonly associated with autism, such as hand flapping or echolalia. These behaviors, along with more significant challenges in social interaction and communication, mean they are the children who would have historically been more likely to obtain an autism diagnosis. Unlike those at Level 1, who may demonstrate milder symptoms and greater adaptability in social settings, individuals at Level 2 typically face more pronounced difficulties in connecting with others and understanding social cues.

Due to the severity of their challenges, children at Level 2 often require more intensive and specialized autism-specific interventions to thrive both at home and in school environments. While children with Level 1 autism may benefit from these interventions, those at Level 2 often rely on them to a much greater extent for success. Traditional autism interventions, such as social stories, visual schedules, augmentative communication systems, or sensory integration techniques play a crucial role in providing structured support for understanding social expectations and managing daily routines.

Personalized accommodations within the classroom setting are often essential for facilitating learning and participation for children at Level 2. These accommodations may include sensory-friendly environments, individualized supports for communication, and strategies to address behavioral challenges. By recognizing and addressing the unique needs of individuals at Level 2, caregivers and educators can create environments that support their development, enhance their social skills, and foster their overall well-being.

Level 3 Autism: Requiring Very Substantial Support

Individuals at Level 3 of the autism spectrum require extensive support in various aspects of daily living. They may exhibit severe communication deficits, limited or absent verbal language, and significant challenges in social interaction. These individuals often rely on individual one-on-one support to perform basic activities of daily living, such as communicating, bathing, and feeding themselves. Due to the severity of their challenges, intensive interventions and specialized support services are necessary to address their complex needs effectively.

Individuals at Level 3 may also experience learning difficulties, which can further impact their

ability to engage with educational, speech, language, and social development programs. Despite advancements in understanding and diagnosing ASD, individuals at Level 3 continue to face considerable barriers in accessing appropriate support and services. Therefore, tailored interventions and comprehensive support services are essential to address their unique needs and promote their overall well-being.

In working with children at Level 3, traditional teaching methods such as PECS or other augmentative communication systems or Applied Behavior Analysis (ABA), particularly discrete trial teaching, may be effective. ABA emphasizes breaking down skills into smaller, more manageable components and using repetition and reinforcement to teach these skills. Additionally, the TEACCH method, which stands for Treatment and Education of Autistic and Communication related handicapped Children, provides structured teaching techniques that utilize visual supports and structured activities to promote independence and organization and is often helpful. For more in-depth information on ABA and its effectiveness, readers can refer to this previous blog post on the topic. For more information on the Picture Exchange Communication System (PECS), check out this previous blog post dedicated to explaining this effective communication tool in more detail. Click [here] to access the post.

The Fluid Nature of Autism Diagnosis

It's crucial to understand that autism diagnosis, including the assigned levels, is not set in stone. It's not uncommon for a child initially diagnosed at one level to later exhibit characteristics aligning more closely with another level. This fluidity highlights the inherent challenges in predicting an individual's trajectory and support needs accurately. Therapists and doctors base their assessments on the information available at the time, including behavioral observations and parent or teacher interviews. However, the dynamic nature of autism means that individuals may demonstrate changes in their abilities and support requirements over time, in different settings, or even throughout the day.

Does It Matter What Level They Say My Kid Is At?

One might wonder, does it really matter what level of autism diagnosis a child receives? Ultimately, the answer is no. However, the designated level may impact the amount of support your child qualifies for in therapy or within the school system. Sometimes, being categorized as needing higher support can lead to access to more resources and services.

However, it's essential to consider the potential implications of such categorizations. Parents, teachers, and therapists may inadvertently lower their expectations or provide less challenging opportunities based on perceived support needs. This phenomenon, known as a self-fulfilling prophecy, underscores the importance of viewing individuals with autism as capable of growth and development regardless of their assigned level.

Navigating Diagnosis and Support Decisions

While the levels of autism diagnosis offer valuable insights into support needs, it's essential to approach them with flexibility and awareness of their limitations. Rather than viewing the assigned level as a rigid classification, it should be seen as a starting point for understanding an individual's strengths, challenges, and support preferences. Moreover, treatment decisions should prioritize individualized interventions that address the unique needs and goals of each person with autism.

In conclusion, while the levels of autism diagnosis provide a helpful framework for understanding support needs, they are not without limitations. Recognizing the fluid nature of autism and embracing individual variability are essential for providing effective support and promoting the well-being of individuals with autism.