Understanding Types and Levels of Autism

Autism Spectrum Disorder (ASD) is a developmental condition that affects how people perceive the world and interact with others. It's a spectrum condition, meaning that it affects people in different ways and to varying degrees. At Rise Up for Autism, we recognize that no two children are alike, and we make sure your child receives the care and support they need, exactly how they need it.

In this post, we will explore the different types of autism that were historically recognized, as well as the current understanding of ASD levels as defined by diagnostic standards.

What Is Autism Spectrum Disorder?

Autism Spectrum Disorder (ASD) is a complex neurodevelopmental condition affecting how individuals communicate and interact with the world.

Statistics from the Centers for Disease Control and Prevention (CDC) indicate that approximately 1 in 54 children in the United States receive an ASD diagnosis. Signs of ASD often appear in early childhood and can impact daily functioning.

The DSM-5 outlines two core areas where autistic individuals may experience differences:

• 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 ASD (as noted by the National Institute of Mental Health):

• 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.

The DSM's Three Levels of Autism

The Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (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.

It's crucial to remember that autism is a spectrum; individuals may experience traits across different levels or fluctuate over time. Think of these levels as a starting point for understanding the diverse ways autism presents itself. 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. Social skills groups are often part of ABA therapy programs and at Rise Up for Autism, are a part of our centers’ daily programming.
• Communication skills training: Can address any subtle communication challenges and help expand the ability to express needs and ideas effectively. Communication training is part of every ABA program and a priority at Rise Up for Autism.
• 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. ABA therapy with certified experts like those at Rise Up for Autism can help improve social skills.
• 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: Individuals with Level 2 autism have great potential. With the right kind of support, they can develop skills, find 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: 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.

Other Types of Autism

Before the DSM-5 was published, autism was considered one of Pervasive Developmental Disorders (PDD).

In the DSM-5 and DSM-5-TR, four of the previous PDD diagnoses are now included in the category of autism spectrum disorder:

• Asperger’s syndrome
• Pervasive developmental disorder, not otherwise specified (PDD-NOS)
• Autistic disorder
• Childhood disintegrative disorder (CDD)

Rett Syndrome, while formerly grouped with PDD, is not considered a type of autism due to its distinct genetic cause.

Asperger’s Syndrome

Asperger's Syndrome (AS) was a term used to describe a specific presentation within the autism spectrum. Individuals with AS faced challenges in social communication and might have repetitive behaviors or restricted interests, but they exhibited typical language development and average to above-average intelligence.

While the official term is no longer in use (replaced by the broader Autism Spectrum Disorder diagnosis), some people diagnosed before the DSM-5 update may still identify as "Aspies" or having AS. Understanding this term helps us appreciate how the diagnosis of autism has evolved to be more inclusive.

PDD-NOS

Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) was a diagnosis used for individuals who exhibited some significant autistic traits but didn't fully meet the criteria for other diagnoses within the Pervasive Developmental Disorder category. Challenges in communication, repetitive behaviors, and restricted interests were present, and there might have been language delay or intellectual disability.

However, these traits weren't considered severe enough for a diagnosis of classic autism. This 'catch-all' diagnosis has been replaced by Autism Spectrum Disorder (ASD) in the DSM-5.

Autistic Disorder

Autistic Disorder was a term used in the DSM-4 to describe presentations of autism where significant support needs were present. Individuals with this diagnosis faced challenges similar to those with PDD-NOS (communication difficulties, repetitive behaviors, restricted interests), but these challenges were typically more pronounced. This distinction aimed to highlight the varying degrees of support autistic individuals might require.

The DSM-5 shifted away from this type of categorization in favor of the Autism Spectrum Disorder (ASD) diagnosis.

Childhood Disintegrative Disorder

According to a 2017 study, Childhood Disintegrative Disorder (CDD) is a rare and severe form of autism where a child experiences a period of typical development followed by a significant regression in skills. This regression can impact language, social interaction, and motor skills, often leading to characteristics of severe autism and intellectual disability.

While more research is needed, studies suggest potential differences in the underlying neurological processes of CDD compared to other presentations of autism.

Rett Syndrome

Rett Syndrome is a genetic disorder that can share some similarities with autism, such as social withdrawal and communication difficulties. This led to its earlier inclusion within the Pervasive Developmental Disorders (PDD) category.

However, researchers have pinpointed a specific genetic mutation as the cause of Rett Syndrome, making it a distinct neurological condition. While there may be overlapping characteristics, Rett Syndrome is no longer considered a type of autism.

Outlook

The outlook for autistic individuals varies greatly depending on their specific needs and the support they receive. Early diagnosis and personalized interventions are crucial for maximizing potential and quality of life across all levels of autism.

• Level 1: With the right support, people with Level 1 autism can often live independently and have fulfilling careers.
• Level 2: Individuals with Level 2 autism may need more substantial support for communication but can develop valuable skills and find meaningful connections.
• Level 3: Even with the significant challenges associated with Level 3, various therapies can lead to increased independence and improved well-being in daily life.

If you or someone you know may benefit from guidance and support related to autism, don't hesitate to reach out for help. Rise Up For Autism offers resources, expert advice, and a compassionate community to assist you on this journey. Contact us today to learn more about how we can support you and your loved ones in understanding and navigating the complexities of Autism Spectrum Disorder.

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