In recent years, Autism has been the subject of intense study and debate as researchers strive to understand the cause of the recent spike in Autism rates. Questions around whether this spike can be attributed to certain exposures during pregnancy or early childhood, or whether they are simply the result of improved screening and changes in diagnostic criteria have sparked much debate. For those of us who are living in the Autistic community - whether parenting or serving as a caregiver to an Autistic individual or maybe even being Autistic ourselves - the cause isn't as relevant as receiving the needed services and supports. And in order for that to happen, there has to be a true understanding of what Autism is, and how it manifests in different people.
Autism Spectrum Disorder (ASD) is not simply a quirk or being socially awkward or introverted. It is a complex neurodevelopmental condition affecting how individuals communicate and interact with the world. The latest statistics from the Centers for Disease Control and Prevention (CDC) indicate that approximately 1 in 31 children receive an ASD diagnosis by age 8 in the United States, with signs often appearing in early childhood.
The Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5) outlines two core areas where Autistic individuals may experience challenges:
Social communication and interaction: Challenges may include understanding social cues, engaging in reciprocal conversation, and expressing needs in conventional ways.
Restricted and repetitive behaviors: Individuals might exhibit strong adherence to routines, intense focus on specific interests, or repetitive movements used for self-regulation.
Potential Early Indicators of Autism (as noted by the NIH):
Limited or atypical eye contact.
Difficulty sharing enjoyment or interest in activities with others.
Challenges responding to social bids for attention.
Difficulty with back-and-forth conversational flow.
Tendency to speak at length without awareness of listener disinterest.
A flat or monotone voice.
Difficulty understanding the perspectives of others.
Sensory sensitivities and a preference for predictable routines.
In our experience with Becca, the pediatrician started doing informal assessment for Autistic traits as we were evaluating how well she was meeting her developmental milestones. Throughout her infancy, my husband and I started noticing that Becca did not interact in ways that were typical for her age - she wasn't clapping to show excitement, she wasn't making eye contact when we said her name, she wasn't pointing to show us anything that she was excited about or to make requests, and she would become fixated on certain objects and block out the world. For example, if she caught a glimpse of the ceiling fan, she would stare at the fan for some time, or play with parts of toys rather than the entire toy. She would spin the wheels of a toy car but not actually play with the car. We didn't necessarily have experience to fall back on - Becca is our first and only child - but we called the pediatrician and expressed our concerns when she was only 10 months old. By 16 months we were completing the intake and evaluations for Early Intervention Services, and by 20 months we had a diagnosis of ASD Level 3, which allowed us to start services in our home from a very early age. Level 3, as we will discuss later, indicates the need for very substantial support for daily living. But it does not say ANYTHING about how intelligent Becca is. Becca is highly intelligent, but does indeed require support for her daily living. And that's okay!
As a spectrum disorder, some Autistic individuals require more support than others. The DSM-5 outlines three levels of Autism Spectrum Disorder (ASD): Level 1, Level 2, and Level 3. These levels are sometimes seen as a replacement for older terms like "low-functioning" or "high-functioning" but are important to understand as they influence diagnosis and access to support. And since Autism exists on a spectrum, individuals may experience traits across different levels or fluctuate over time. Each person with ASD has a unique profile of strengths and areas where they may need additional support.
Autism Level 1: Requiring Support
Individuals diagnosed with Level 1 Autism, formerly known as high-functioning Autism, experience challenges with social interactions and communication, but these challenges can often be addressed with appropriate support in place.
Key Characteristics:
Social communication: May find it harder to initiate conversations or respond to social cues. They might have difficulty understanding nonverbal communication like body language or facial expressions. They might express interest in social situations yet find the flow of typical interactions difficult.
Behavioral flexibility: May struggle with transitions between activities, have difficulty with organization and planning, or show some preference for routines. They may exhibit a strong interest in specific topics.
Functioning: Individuals with a Level 1 Autism diagnosis often manage daily life independently. However, support systems at school, work, or within their community can be very beneficial in fostering an environment where their strengths are recognized and challenges are supported.
Important Note: The label "Level 1" doesn't mean a person experiences "mild" Autism. Each Autistic person faces unique experiences, and the goal is to provide tailored support that empowers them to live a full and meaningful life.
Examples of Beneficial Supports for Level 1 Autism:
Social skills training: Groups or individual sessions focusing on understanding social cues, conversational skills, and strategies for navigating different social situations.
Communication skills training: Can address any subtle communication challenges and help expand the ability to express needs and ideas effectively.
Mental health support: Can help manage co-occurring conditions like anxiety or low mood, which are common in Autistic individuals.
Educational accommodations: Modifications within the classroom, such as extra time for processing information or preferential seating, can create a more supportive learning environment.
Workplace support: Understanding from employers and access to accommodations like clearer instructions or sensory-friendly workspaces can significantly enhance success.
Autism Level 2: Requires Substantial Support
Individuals diagnosed with Level 2 Autism face more pronounced challenges with social communication and behavioral flexibility than those with Level 1. They will benefit greatly from consistent and customized support.
Key Characteristics:
Social communication: May have limited verbal communication or use simple phrases. Difficulty understanding social nuances, nonverbal communication, and engaging in back-and-forth conversations might be obvious. Their social interest may be present but ways of expressing it may be atypical.
Behavioral flexibility: Challenges with change and transitions can be significant. They may exhibit strong preferences for routines or specific interests. Repetitive behaviors may be noticeable and used as a way to self-regulate. ABA programs can help address this issue and build important skills.
Functioning: Support is needed in daily life. Difficulty with independent living is likely. Access to educational modifications, therapies, and a network of supportive individuals can significantly improve their quality of life.
Important Note: With the right kind of support, individuals with ASD Level 2 can make meaningful connections and lead fulfilling lives. Understanding that their challenges aren't a lack of effort or desire, but a distinct way of processing the world, is crucial for those supporting them.
Examples of Substantial Support for Level 2 Autism:
Applied Behavior Analysis (ABA): Teaches skills, reduces challenging behaviors, and focuses on positive reinforcement within natural environments.
Speech-language therapy: Focuses on developing verbal and nonverbal communication skills, including understanding social cues.
Social skills groups: Provide a structured, supportive setting to learn and practice social skills, build relationships, and navigate real-life scenarios.
Augmentative and alternative communication (AAC): Tools like picture boards, sign language, or technology-based communication devices can provide those with limited verbal ability a powerful way to communicate.
Occupational therapy: Helps improve sensory processing, fine motor skills, and daily living tasks, in addition to strategies to manage transitions or overwhelming situations.
Educational support: Individualized Education Programs (IEP) and smaller classroom settings can be highly beneficial.
Vocational training: Prepares for future employment and independent living.
Autism Level 3: Requires Very Substantial Support
Level 3 Autism, formerly known as low-functioning Autism, presents the most significant challenges in social communication and behavioral flexibility. Individuals at this level require intensive, ongoing support across multiple aspects of daily life.
Key Characteristics:
Social communication: May be nonverbal or have limited communication. They might find the social demands of everyday interactions overwhelming and express interests or needs in unconventional ways.
Behavioral flexibility: Extreme difficulty with change, transitions, and unexpected events. They may exhibit strong repetitive behaviors, potentially as self-soothing mechanisms or attempts to regulate overwhelming sensory input.
Functioning: Need considerable support across most settings. They might struggle with activities of daily living, and communication of basic needs can be a significant challenge.
Important Note: Even with the most severe manifestations of Autism, love, dedication, and the right support systems can lead to significant improvement in skills and quality of life. Intensive, individualized interventions are critical for these individuals.
Examples of Very Substantial Support for Level 3 Autism:
The supports mentioned for earlier levels (speech therapy, AAC, ABA, occupational therapy, educational supports) are still crucial for Level 3 but often require significant modifications and intensive application. Additional areas of support may include:
Daily living skills training: Focus on basic self-care tasks like dressing, eating, hygiene, and simple routines.
Sensory integration therapy: Helps manage sensory sensitivities, reduce sensory overload, and improve self-regulation.
Medication or Supplements: May manage co-occurring conditions like anxiety, sleep problems, or mood-related challenges.
Residential care: This may be necessary in some cases, providing a safe environment with access to intensive, round-the-clock support.
Profound Autism: Requires Extreme Support
In recent years, researchers have introduced an additional level which refers to a subset of individuals currently living with ASD Level 3. The term "profound Autism" refers to individuals with ASD Level 3 who:
have an intellectual disability with an IQ less than 50 and
minimal-to-no language and require 24-hour supervision and
assistance with activities of daily living.
This group comprises an estimated 26.7% of all children diagnosed with Autism, with a large proportion of Level 3 Autistic individuals also meeting the criteria for profound Autism.
Profound Autism is not an official diagnosis. Individuals with profound Autism will have a diagnosis of ASD Level 3. However, it is an important distinction to make. While all profoundly Autistic individuals have Level 3 Autism, not all individuals with Level 3 Autism meet the criteria for profound Autism. This terminology, which has been officially recognized by the Autism Science Foundation since 2023, is used to encourage both the clinical and research global communities to prioritize the needs of this vulnerable population. Key Characteristics:
Individuals with profound Autism face significant daily challenges across multiple areas, which necessitates comprehensive support.
Communication and social interaction
Minimal communication: Many are nonverbal or have very limited verbal skills, making it difficult to express their needs, thoughts, and emotions.
Alternative communication: To communicate effectively, individuals may require alternative and augmentative communication (AAC) methods, such as picture exchange systems (PECS) or specialized electronic devices.
Difficulty with social cues: They may struggle with initiating social interactions and understanding social norms and cues, which can lead to social isolation.
Daily living skills
Extensive assistance: Many individuals require help with basic activities of daily living, such as dressing, bathing, and eating, even into adulthood.
Lifelong care: Independence is often impossible, and the need for care continues throughout their lifespan.
Behavior and regulation
Challenging behaviors: Self-injurious behaviors (like head-banging or biting), aggression, and severe tantrums are common and can pose safety risks.
Severe sensory sensitivities: They may be hyper- or hypo-sensitive to sensory input such as sounds, light, or textures, which can lead to distress or meltdowns.
Need for routine: A rigid need for structure and routine is common, and unexpected changes can cause intense anxiety.
Co-occurring medical conditions
High rates of comorbidities: Profound Autism is associated with a higher likelihood of co-occurring medical conditions, such as epilepsy, which requires consistent medical management.
Examples of Extreme Support for Profound Autism:
Given the extreme challenges, a variety of specialized and intensive support systems are necessary.
Specialized education: Tailored educational programs focus on building practical life skills and alternative communication methods.
Intensive therapies: Applied Behavior Analysis (ABA), speech, and occupational therapies are often used to help manage behaviors and develop communication and daily living skills.
Respite and financial aid: The constant demand for care places a significant strain on families. Respite care, support groups, and financial assistance are critical to alleviate the emotional and financial burden on caregivers.
Assistive technology: Technology, such as communication devices, can be used to help individuals communicate their needs and increase independence
Truly understanding that Autism exists on a spectrum is the first step to understanding how we can best support Autistic individuals, young and young-at-heart. When Becca was first diagnosed, all I could hear was "Level 3". Severe. Low-functioning. Requiring very substantial support. And hearing about all the help she would need just to acquire basic life skills. But now, a few years into this journey, I have seen firsthand how much Becca has grown, and she is thriving! Yes, she still requires very substantial support. But she is not the same little girl she was at diagnosis and I know that as she continues to get older she is going to continue to crush her goals and move on to even greater things.
Equally important as understanding the levels of Autism is to acknowledge the millions of families who are dealing with the realities of Autism every day. In this age of increased awareness, these realities are often buried in social media posts celebrating Autism as a superpower or a quirky mask that people can put on and take off at will when it suits them. Autism is real, and the challenges that our families face are real. While many on the spectrum might be able to advocate for themselves, many cannot. Many cannot dress themselves or eat independently, many still use diapers, they may not be able to tie their shoes yet. Some of them are hurting themselves with dangerous stimming or eating things that are not edible. Some use a tablet to communicate, and some do not have the motor skills or planning skills to effectively use these devices so they rely on gestures and noises. This is not an easy road - especially for those families with loved ones with more severe forms of Autism. So let's understand that Autistic individuals and their families are working really hard - and true support starts with understanding that they see the world and interact with it a little bit differently. Making connections with them requires learning a whole new language. But it's so worth it. Becca has taught me more in her six years of life than I have learned anywhere else. And I am excited to see where the journey takes us next.
