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Understanding Autism with Higher Support Needs: Beyond the “Low-Functioning” Label When discussing

April 15, 2025

Understanding Autism with Higher Support Needs: Beyond the “Low-Functioning” Label

When discussing autism spectrum disorder (ASD), the terms “high-functioning” and “low-functioning” have historically been used to describe different presentations and support needs. However, the autism community, researchers, and clinicians have increasingly moved away from these functioning labels, recognizing them as oversimplified and potentially harmful descriptors that fail to capture the complex, nuanced nature of autism.

This comprehensive guide focuses on understanding autism with higher support needs—what has traditionally been labeled as “low-functioning autism.” We’ll explore the characteristics, challenges, support approaches, and importantly, the capabilities and personhood of individuals who require more substantial assistance. By moving beyond limiting labels, we can develop a more accurate, respectful understanding of autism across the spectrum of support needs.

Table of Contents

Moving Beyond Functioning Labels

The Problem with “Low-Functioning” Terminology

The term “low-functioning autism” is problematic for several important reasons:

It’s Reductive: It collapses a complex profile of strengths, challenges, and individual characteristics into a single, often negative label.
It Creates False Dichotomies: Autism doesn’t exist in two simple categories but rather as a spectrum of presentations with varying support needs across different domains.
It Can Be Stigmatizing: The label can lead to lowered expectations and fewer opportunities for those categorized as “low-functioning.”
It Obscures Individual Strengths: Many individuals with high support needs demonstrate remarkable abilities in specific areas that get overlooked when using deficit-focused terminology.
It’s Unstable Over Time: Support needs can change substantially throughout life with appropriate interventions and accommodations.

Current Terminology

More accurate, respectful ways to describe individuals who need significant support include:

Autism with high/higher support needs
Autism Level 2 or 3 (using DSM-5 terminology)
Autism with co-occurring intellectual disability (when applicable)
Non-speaking or minimally speaking autism (when applicable)
Autism with intensive support requirements

These terms focus on the supports needed rather than making judgments about a person’s inherent capabilities or worth.

Understanding Autism with Higher Support Needs

Key Characteristics

Individuals with higher support needs in autism typically experience:

Communication Differences

Spoken Language: May be non-speaking, have limited speech, or use echolalia (repeating others’ words)
Receptive Language: May have difficulty understanding verbal instructions or abstract language
Alternative Communication: Many use alternative and augmentative communication (AAC) systems including picture exchange systems, communication boards, or speech-generating devices
Nonverbal Communication: May use gestures, leading others by the hand, or other means to communicate needs

Social Interaction Patterns

Social Awareness: May show interest in others but have difficulty with conventional social interaction
Joint Attention: Often have challenges with shared focus on objects or events with others
Social Reciprocity: May engage in parallel play rather than interactive play
Relationship Building: Form attachments and bonds, though these may look different from neurotypical relationships

Behavioral and Sensory Experiences

Repetitive Movements: May engage in stimming behaviors such as rocking, hand-flapping, or spinning
Routines and Rituals: Often rely heavily on predictable routines and may experience distress with changes
Sensory Sensitivities: Commonly experience heightened or reduced responses to sensory input
Self-Regulation Challenges: May have difficulty managing emotions and sensory experiences
Restricted Interests: Often have intense focus areas, though these may be expressed differently than in those with lower support needs

Co-occurring Conditions

Many individuals with higher support needs autism may also experience:

Intellectual Disability: About 30-40% of autistic individuals have co-occurring intellectual disability
Epilepsy: Approximately 20-30% of autistic people with higher support needs have seizure disorders
Motor Coordination Challenges: Including apraxia (difficulty coordinating voluntary movements)
Gastrointestinal Issues: Often experience digestive problems at higher rates
Sleep Disorders: Frequently report sleep disturbances and irregular sleep patterns
Mental Health Conditions: May experience anxiety, depression, or other conditions, though these can be challenging to diagnose and treat

Assessment and Diagnosis

Diagnostic Process

Comprehensive assessment for individuals with higher support needs typically includes:

Developmental History: Detailed information about early development, regression (if applicable), and milestone attainment
Standardized Assessment Tools:
- Autism Diagnostic Observation Schedule (ADOS-2)
- Autism Diagnostic Interview-Revised (ADI-R)
- Childhood Autism Rating Scale (CARS)
Cognitive and Adaptive Functioning Assessments:
- Tests that allow for nonverbal responses
- Adaptive behavior scales measuring practical life skills
- Play-based developmental assessments
Communication Assessment:
- Evaluation of receptive and expressive language
- Assessment for potential use of AAC systems
- Pragmatic communication skills
Sensory Processing Evaluation:
- Assessment of sensory sensitivities and patterns
- Impact of sensory differences on daily functioning
Medical Evaluation:
- Genetic testing to identify potentially related genetic conditions
- Neurological examination to assess for co-occurring conditions
- Hearing and vision screening

Early Identification

Research consistently shows that early identification leads to better outcomes. Early signs that may indicate higher support needs include:

Limited or absent babbling by 12 months
No gestures (pointing, waving) by 12 months
No single words by 16 months
No two-word phrases by 24 months
Loss of previously acquired language or social skills
Limited eye contact and social engagement
Unusual body movements or postures
Intensely repetitive behaviors appearing in early development

Evidence-Based Interventions and Supports

Comprehensive Intervention Approaches

Several approaches have shown effectiveness for individuals with higher support needs:

Applied Behavior Analysis (ABA)

Modern, ethical ABA approaches focus on:

Building functional skills that improve quality of life
Using positive reinforcement rather than aversives
Following the individual’s lead and interests
Respecting autonomy and communication attempts
Teaching meaningful skills in natural environments

Developmental Approaches

Models such as DIR/Floortime and SCERTS emphasize:

Following the child’s lead and interests
Building upon emotional engagement
Developing reciprocal communication
Creating meaningful social relationships
Supporting emotional regulation

Structured Teaching (TEACCH)

This approach provides:

Visual organization of the environment
Predictable routines and schedules
Clear visual instructions and expectations
Work systems that promote independence
Adaptations based on individual learning styles

Communication Supports

Supporting communication development is critical and may include:

Augmentative and Alternative Communication (AAC)

Picture Exchange Communication Systems (PECS): Using pictures to make requests and comments
Speech-Generating Devices: Electronic devices that speak words when buttons are pressed
Letter or Text-Based Systems: For individuals who can spell but may not speak
Sign Language: Modified sign language can benefit some individuals

Research from the American Journal of Speech-Language Pathology shows that AAC use does not hinder verbal language development and often facilitates it (Schlosser & Wendt, 2008).

Communication-Focused Therapy

Speech-Language Therapy: Addressing both verbal and nonverbal communication
Pragmatic Language Intervention: Teaching the social aspects of communication
Presume Competence Approach: Assuming understanding even when expressive communication is limited

Sensory and Behavioral Supports

Sensory Integration and Processing

Sensory Diets: Scheduled sensory activities throughout the day
Environmental Modifications: Adjusting lighting, sound, and tactile experiences
Sensory Breaks: Regular opportunities for sensory regulation
Sensory-Based Interventions: Activities designed to meet specific sensory needs

Positive Behavior Support

Functional Behavior Assessment: Identifying the purposes served by challenging behaviors
Antecedent Interventions: Modifying environments to prevent triggers
Teaching Alternative Behaviors: Providing more adaptive ways to meet needs
Crisis Prevention and Management: Strategies for safely supporting individuals during behavioral crises
Trauma-Informed Approach: Recognizing and addressing potential underlying trauma

Educational Approaches

Appropriate educational settings may include:

Specialized Autism Classrooms: With low student-to-teacher ratios
Inclusion with Substantial Supports: Participation in general education with specialized assistance
Hybrid Models: Combining specialized instruction with inclusive opportunities
Home-Based Programs: Particularly for very young children or those with medical complexities

Effective educational programs typically include:

Highly structured environments with visual supports
Individualized curricula based on developmental needs
Integrated related services (speech, OT, PT)
Functional life skills instruction
Communication-rich environments
Data-based decision making and progress monitoring

Supporting Daily Living and Independence

Life Skills Development

Priority skill areas often include:

Self-Care Skills

Personal hygiene routines
Dressing skills
Toileting independence
Eating with appropriate utensils
Basic grooming

Home Management Skills

Simple food preparation
Household cleaning tasks
Laundry skills
Safety awareness in the home
Following visual routines for daily tasks

Community Skills

Safe transportation use
Appropriate behavior in public settings
Shopping skills
Recreational activity participation
Safety with strangers

Promoting Maximum Independence

Effective approaches include:

Task Analysis: Breaking complex skills into manageable steps
Visual Supports: Using pictures, videos, or written instructions
Systematic Instruction: Teaching skills with consistent prompting and reinforcement
Assistive Technology: Using devices and apps to increase independence
Environmental Modifications: Adapting spaces to reduce barriers
Structured Routines: Creating predictable patterns that can eventually be followed independently

Understanding and Supporting Challenging Behaviors

Reframing “Challenging Behaviors”

Behaviors often labeled as “challenging” or “problem behaviors” are better understood as:

Communication attempts when other means aren’t available
Responses to overwhelming sensory environments
Expressions of unmet needs or discomfort
Self-regulation strategies
Reactions to change or uncertainty
Manifestations of physical discomfort or medical issues

Positive Approaches to Behavior Support

Evidence-based approaches include:

Functional Behavior Assessment: Determining what purpose the behavior serves for the individual
Addressing Underlying Causes:
- Medical issues (pain, illness, seizures)
- Sensory overload or needs
- Communication frustration
- Anxiety or emotional distress
- Environmental stressors
Proactive Strategies:
- Building communication systems
- Creating predictable environments
- Teaching self-regulation skills
- Providing sensory accommodations
- Ensuring needs are met before challenges arise
Crisis Support:
- Safety planning for serious behaviors
- De-escalation techniques
- Environment management
- Trauma-informed approaches
- Post-crisis debriefing and learning

Family Support and Well-being

Impact on Families

Raising a child with higher support needs autism can impact:

Parental Mental Health: Higher rates of stress, anxiety, and depression
Sibling Adjustment: Different family dynamics and responsibilities
Financial Resources: Increased costs for therapies, specialized care, and accommodations
Social Relationships: Changes in friendships and social opportunities
Family Activities: Need for careful planning and modifications
Parental Employment: Often requires work adjustments or reduced hours

Building Family Resilience

Strategies that support family well-being include:

Respite Care: Regular breaks for primary caregivers
Parent Training: Education in intervention strategies and support approaches
Support Groups: Connecting with other families with similar experiences
Sibling Support: Programs specifically for brothers and sisters
Financial Planning: Resources for managing long-term financial needs
Collaborative Professional Relationships: Building partnerships with support providers
Self-Care Practices: Prioritizing caregiver well-being

Research from the Journal of Autism and Developmental Disorders found that access to formal supports and respite care significantly reduces parental stress and improves family functioning (Harper et al., 2013).

Transition Planning and Adulthood

Planning for the Future

Comprehensive transition planning should begin in early adolescence and address:

Living Arrangements: Options from supported living to group homes
Meaningful Activities: Day programs, volunteer opportunities, or supported employment
Continuing Education: Post-secondary options with appropriate supports
Legal Considerations: Guardianship, supported decision-making, special needs trusts
Healthcare Transition: Moving from pediatric to adult medical care
Government Benefits: Securing SSI, Medicaid, and other supports
Quality of Life: Ensuring opportunities for preferred activities and social connections

Adult Support Models

Promising approaches for adults with higher support needs include:

Person-Centered Planning: Focusing on individual preferences and strengths
Supported Living: Assistance in less restrictive community settings
Self-Directed Services: Giving individuals and families more control over supports
Integrated Employment: Work opportunities with appropriate job coaching
Day Programs: Structured activities focusing on continued skill development
Community Inclusion: Meaningful participation in community life
Assistive Technology: Increasing independence in daily living

Presuming Competence: Abilities Beyond Appearances

The Importance of Presuming Competence

One of the most critical shifts in understanding autism with higher support needs is the principle of presuming competence—assuming that individuals understand more than they may be able to demonstrate through conventional means.

Research and countless personal testimonies have shown that:

Receptive language (understanding) often far exceeds expressive abilities
Motor planning challenges may mask cognitive capabilities
Access to appropriate communication methods can reveal previously hidden abilities
Intelligence testing that relies on spoken responses or typical motor skills often underestimates actual cognitive abilities

As noted by autism researcher Dr. Anne Donnellan, we must practice “the least dangerous assumption”—assuming competence in the absence of absolute evidence, as to do otherwise risks creating a self-fulfilling prophecy of limited expectations and opportunities.

Examples of Hidden Capabilities

Numerous individuals who were once classified as “low-functioning” have demonstrated remarkable abilities when given appropriate communication tools and supports:

Typing to Communicate: Some individuals unable to speak have revealed complex thoughts and feelings through typing, sometimes with physical support
Artistic Expression: Many express profound ideas through painting, music, or other creative forms
Emerging Communication: Some develop speech or expanded communication after years of being considered severely limited
Problem-Solving Skills: Often demonstrate creative solutions when presented with motivating challenges
Emotional Understanding: Frequently show deep empathy and emotional awareness despite stereotypes to the contrary

Advances in Research and Understanding

Current Research Directions

Promising areas of research for autism with higher support needs include:

Genetic Studies: Identifying specific genetic factors that may lead to targeted interventions
Motor Planning Interventions: Addressing apraxia and movement difficulties that affect communication
Personalized Medicine: Tailoring medical approaches to individual genetic and biological profiles
Advanced Communication Technologies: Developing more intuitive and accessible AAC devices
Sensory Integration Research: Building evidence for sensory-based interventions
Quality of Life Measures: Developing better ways to assess well-being beyond traditional functional measures
Long-Term Outcomes: Understanding factors that lead to optimal adult outcomes

Shifting Paradigms

Our understanding continues to evolve with important paradigm shifts:

From managing behaviors to understanding their communicative intent
From focusing primarily on deficits to recognizing strengths
From viewing independence as the ultimate goal to valuing interdependence
From professional-driven goals to person and family-centered planning
From segregated services to community inclusion with appropriate supports

Ethical Considerations and Rights

Ethical Support Practices

Supporting individuals with higher needs autism requires careful ethical consideration:

Dignity and Respect: Treating individuals as full persons regardless of ability level
Self-Determination: Providing opportunities for choice and control
Preventing Abuse: Higher vulnerability requires vigilant protection
Balancing Safety and Freedom: Finding the right balance for each individual
Privacy Considerations: Respecting privacy even when substantial support is needed
Inclusion vs. Specialized Settings: Making individualized decisions about best environments

Disability Rights Movement

Individuals with higher support needs benefit from broader disability rights advances:

Legal Protections: IDEA, ADA, and other laws ensuring rights to education and services
Self-Advocacy Movement: Including those with more significant disabilities in advocacy
“Nothing About Us Without Us”: Ensuring representation in policy decisions
Shifting from Charity to Rights Model: Viewing supports as rights rather than charity
Community Living Movement: Supporting the right to live in the least restrictive environment

Conclusion: Seeing the Person First

Understanding autism with higher support needs requires looking beyond labels and surface appearances to recognize the whole person—their unique combination of challenges, strengths, preferences, and potential.

When we move past the limiting concept of “low-functioning autism” and embrace a more nuanced, strength-informed perspective, we open doors to better supports, more meaningful connections, and richer lives for individuals across the autism spectrum.

Every person with autism, regardless of their support needs, has inherent value, unique contributions to make, and the right to a life of dignity, connection, and purpose. By presuming competence, providing appropriate supports, and maintaining high expectations, we can help ensure that individuals with higher support needs autism have every opportunity to develop to their fullest potential and experience the highest possible quality of life.

As autism advocate and parent Robert Rummel-Hudson noted: “Every child has a voice. It’s up to us to find a way to help them use it.”