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Addressing Underserved Populations In Autism Spectrum Research An Intersectional Approach

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Addressing Underserved Populations in Autism Spectrum Research: an Intersectional Approach

Introduction: the Critical Gap in Autism Research

This comprehensive resource addresses a fundamental crisis in autism spectrum research: the systematic exclusion of large, diverse populations from studies that shape our understanding of autism. The vast majority of autism research focuses on young, typically male, white, higher-functioning Autistic children without intellectual disabilities—creating profound knowledge gaps that perpetuate health inequities and inadequate Support for underserved communities.

When research excludes autistic seniors, autistic females, fathers raising autistic children, Autistic individuals with intellectual disabilities, and African American and Latino autistics, the resulting knowledge base cannot adequately serve the diverse Autistic community. This exclusion creates cascading effects: Diagnostic tools fail to recognize autism in marginalized groups, clinicians lack training to identify diverse presentations, and Support services remain designed for populations that don’t reflect the full spectrum of Autistic experience.

Historical Context: from Discovery to Inclusion Crisis

Evolution of Autism Understanding

Autism research has evolved dramatically since its initial conceptualization. First noted by Eugene Bleuler in 1939 as a characteristic of schizophrenia, modern autism study began with Leo Kanner’s seminal 1943 paper “Autistic Disturbances of Affective Contact.” Kanner identified three core characteristics that continue to inform Diagnosis: restricted and repetitive behaviors, social limitations, and restricted verbal communication.

Concurrently, Hans Asperger conducted parallel research in Vienna, but his work remained unknown to English-speaking clinicians until Lorna Wing translated it in 1981 and Uta Frith translated his doctoral thesis in 1991, coining the term “Asperger syndrome.”

The field has experienced exponential growth driven by seven major factors:

  1. Broadening diagnostic criteria (DSM-5 now includes co-occurring conditions)
  2. Increased recognition of autistic females
  3. Acknowledgment that autism is lifelong
  4. Conceptualizing autism as a spectrum rather than separate categories
  5. Recognition that autism impacts multiple life domains
  6. Acknowledgment of co-morbid conditions like depression and insomnia
  7. The neurodiversity movement’s influence in positioning autism as identity rather than disorder

The Research Imbalance: Quantifying Exclusion

Age Disparities in Research

The age bias in autism research is severe and documented across multiple studies:

  • Jang et al. (2014) found only 3% of reviewed studies included Autistic participants aged 60+
  • Bebko et al. (2008) found 82-91% of conference abstracts (2004-2006) focused on participants under 18 years
  • Research on autistic seniors remains virtually nonexistent despite aging diagnosed cohorts requiring age-appropriate services

Gender Disparities in Research Participation

Gender bias is equally stark and persistent:

  • Watlis et al. (2014) found 85.85% of participants in intervention studies were male
  • This means less than 15% of research participants represent females, despite comprising substantial portions of the Autistic population
  • Research on female autism presentation remains severely limited, perpetuating Diagnostic disparities

Funding Patterns That Reinforce Exclusion

Research funding allocation reflects and reinforces these disparities:

Autistic Seniors: the Invisible Population

Physical Health Disparities

As autistics age, physical health challenges escalate dramatically:

Cognitive Aging Patterns

Limited research suggests mixed patterns in cognitive aging among autistics:

  • Some age-related cognitive tasks show poorer performance
  • Other areas like visual memory and immediate recall may be preserved or enhanced
  • Findings require validation through larger, more comprehensive studies

Mental Health in Aging Autistics

Mental health research scarcely includes seniors:

Unstudied Critical Areas

Vital aspects of Autistic aging remain completely unexamined:

Autistic Females: Diagnostic Invisibility and Systemic Barriers

Three Primary Barriers to Female Diagnosis

(1) Lack of Diagnostic Knowledge Among Professionals

  • Some clinicians (48% in Taylor et al. 2016; 36.8% in Crane et al. 2019) rely on clinical judgment without meeting formal Diagnostic criteria
  • This directly disadvantages females whose presentations are subtle and differ from male patterns
  • Many healthcare providers lack training in female autism presentation

(2) Insensitive Diagnostic Instruments

(3) Social Camouflage and Masking The camouflage or “masking” phenomenon represents a critical explanation for female underdiagnosis:

Additional Barriers to Female Diagnosis

Benefits of Diagnosis Despite Barriers

When Diagnosis is obtained, documented benefits include:

Fathers Raising Autistic Children: the Invisible Parental Population

Quantifying Paternal Underrepresentation

Research on fathers reveals significant underrepresentation:

  • Braunstein et al. (2013) found only 8,714 father participants compared to 47,076 mother participants across 404 studies
  • Across disciplines and time periods, fathers were consistently underrepresented
  • Autism/developmental disabilities produced relatively more paternal studies than psychiatry or clinical psychology

Paternal Mental Health and Identity Shift

Fathers report profound identity shifts and amplified demands:

Barriers to Father Participation in Research

Concrete and preventable barriers include:

  • 81.84% of fathers report not being asked to participate in research
  • Studies often use generalized “parent” language that implicitly assumes maternal participants
  • Recruitment strategies rarely target paternal networks and preferences

Effective Father Recruitment Strategies

Research identifies successful approaches:

Autistic Individuals with Intellectual Disabilities: a Quarter Invisible in Research

Prevalence and Demographics

Approximately 25-33% of Autistic children have co-occurring intellectual disability (IQ ≤70), yet this population is severely underrepresented in research.

CDC’s ADDM Network data shows remarkable consistency:

  • Roughly 30-40% of diagnosed Autistic children have intellectual disabilities or borderline intellectual disabilities (IQ 71-85)
  • 2016 data showed 33.4% with co-occurring intellectual disability across 10 surveillance sites
  • Site variation from 25% in New Jersey to 42% in Georgia
  • Autistic females are consistently more likely to receive intellectual disability diagnoses (2016: 40% females vs. 32% males)

Early Intervention Data

Early ADDM Network data for 4-year-olds shows even higher rates:

  • 47-52.6% had intellectual disabilities
  • Suggesting earlier or more severe presentations in younger cohorts
  • Indicates potential developmental patterns requiring further investigation

Research Barriers

Two critical barriers prevent research participation:

(1) Caregiver Burden

  • 52% of parents raising Autistic children with intellectual disabilities experience financial difficulty compared to 40.1% of parents of Autistic children without intellectual disabilities
  • 51.1% must stop working entirely, making research participation logistically impossible without targeted Support
  • Projected lost income for informal carers in Australia by 2030: 310 million in 2015)

(2) Small Population Pool

  • The ~25% subset makes random sampling infeasible
  • Geographic distribution creates recruitment challenges
  • Specialized Support needs increase research complexity and cost

Critical Research Gaps

This exclusion creates knowledge gaps in essential areas:

African American and Latino Autistics: Prevalence Without Research Representation

Documented Prevalence Disparities

African American and Latino autistics are dramatically underrepresented in research despite sometimes having equal or higher prevalence rates than white peers:

  • During 2016, Black non-Hispanic children aged 4 in North Carolina had the highest ASD prevalence (12.3/1,000) compared to white non-Hispanic children (11.5/1,000)
  • Similar patterns observed in other geographic regions

Research Representation Gaps

The gap between community prevalence and research representation is stark:

  • Only 2.3% of Autism Genetic Resource Exchange subjects were African American
  • The Interactive Autism Network had less than 5% self-identified as African American or biracial (out of 9,817 registered autistics)
  • Three prominent autism journals (2014 data) reported ethnicity in only 11-36% of studies

Multifaceted Barriers to Participation

Barriers exist at multiple levels:

Diagnostic Barriers:

Research Barriers:

  • Recruitment channels not reaching diverse communities
  • Research materials not available in multiple languages
  • Lack of cultural competency in research design
  • Implicit bias in participant selection

Systemic Barriers:

  • Systemic racism in academic institutions
  • Limited diversity among autism researchers
  • Funding priorities excluding community-identified needs

Diagnostic Inconsistency: a Systemic Problem

Documented Diagnostic Variation

Diagnostic procedures vary widely and sometimes undermine accuracy:

  • In a study of 173 Australian healthcare professionals, 17% disclosed diagnosing children as Autistic despite not meeting full Diagnostic criteria
  • Of these, 88% stated this occurred in less than 10% of their assessments
  • One clinician reported doing this in approximately 30% of cases
  • These practices occurred because assessments were inadequate or clinicians wanted children to access early intervention services

Provider-Level Barriers

Multiple provider-level barriers contribute to inconsistency:

  • 39.5% of UK general practitioners reported receiving no formal medical school training on autism
  • Clinicians frequently lack training about spectrum presentations
  • Many use inconsistent or unorthodox Diagnostic procedures
  • Many display unwillingness to explain Diagnostic decisions to patients or families
  • Limited understanding of cultural variations in autism presentation

Consequences of Problematic Diagnostic Procedures

Impact on Parents of Autistic Children

Extended wait times and anxiety from prolonged Diagnostic timelines create measurable distress:

Impact on Undiagnosed Autistic Adults

The consequences are severe and lasting for adults who missed childhood Diagnosis:

  • Late-diagnosed individuals describe “reliving life through a new lens”—re-examining past experiences with new understanding
  • One participant reflected: “thousands of memories coming back, constantly of ‘oh, I remember when this happened … that’s why I had a meltdown and couldn’t understand why.’”
  • Adults experience temporary relief when Diagnosis finally explains past behaviors
  • Disappointment when Diagnosis doesn’t result in accessing Support services
  • Preventable mental health consequences through timely childhood Diagnosis

Medical Professional Impacts

Diagnostic gaps directly harm Autistic individuals:

Research Community Consequences

Diagnostic disparities directly limit recruitment:

  • Undiagnosed Autistic people cannot participate in studies
  • Underdiagnosis in specific populations means these groups remain systematically excluded from research
  • Perpetuates knowledge gaps about autism diversity
  • Creates cascading health inequities across generations

Multidisciplinary Assessment: a Solution with Evidence

Diagnostic Agreement Problems

Research shows clinicians viewing identical video evidence reach different conclusions:

  • Complete Diagnostic agreement occurs in only 33% of cases
  • 67% show lack of universal agreement
  • Single-clinician Assessment produces unreliable results

Benefits of Multidisciplinary Teams

Multidisciplinary teams provide multiple advantages:

  • Clinicians can validate and debate each other’s judgments
  • Produces more robust assessments through discussion
  • Catches patterns through multiple perspectives
  • Reduces individual bias and blind spots
  • Provides comprehensive evaluation across domains

Ideal Assessment teams include:

Comprehensive Assessment Requirements

Thorough evaluation requires evidence from multiple domains:

Medical and Health History:

Family History and Function:

Developmental and Educational History:

ASD-Specific Signs/Symptoms:

  • Behaviors per DSM or ICD criteria
  • Severity across different contexts
  • Impact on daily functioning

Other Relevant Behaviors/Signs:

Severity Classification Challenges

The DSM-5 severity classification system presents implementation problems:

  • Level 1 – requiring Support
  • Level 2 – requiring substantial Support
  • Level 3 – requiring very substantial Support

This system is difficult to quantify and lacks clear Assessment guidelines:

  • Current classification methods are inconsistent across sites and providers
  • Clinicians need clearer guidelines on Assessment tools for calculating severity levels
  • Severity should be reassessed throughout the individual’s lifespan as coping skills and abilities develop

Practical Strategies for Inclusive Research and Practice

Strategy 1: Acknowledging Sex/gender Differences in Symptomatology

Implementation Steps:

  • Diagnostic tools should include detailed descriptions of how autism manifests differently in males versus females
  • Assessment teams should compare individuals to same-gender peers rather than male-normed groups
  • Training should explicitly address gender influences on Diagnostic evaluation
  • Focus on quality of social reciprocity rather than isolation patterns
  • Examine ability to initiate and maintain friendships, understanding of social nuance, and presence of restricted/repetitive interests

Strategy 2: Mandating Family and Caregiver Input

Best Practices:

Strategy 3: Implementing Multidisciplinary Assessment Teams

Structural Requirements:

  • Establish formal Assessment teams combining multiple disciplines
  • Create structured protocols for evidence evaluation
  • Implement clear decision-making procedures that produce consensus diagnoses
  • Document which Assessment tools were used, severity classifications with rationale, and confidence levels

Strategy 4: Recognizing Racial, Ethnic, and Cultural Context

Culturally Competent Assessment:

  • Explicitly consider individual’s racial/ethnic background and cultural factors
  • For Aboriginal people specifically: acknowledge role of family, extended family, and community
  • Empower their attitudes and beliefs about autism
  • Center their priorities in Assessment and Support planning
  • Provide interpreter services and translated educational materials
  • Address systemic racism and discrimination in research and clinical settings

Strategy 5: Implementing Inclusive, Participatory Research Practices

Pre-Data Collection:

During Data Collection:

  • Offer alternative data collection methods accommodating sensory needs
  • Provide honorarium compensation (sitting fees) as standard practice
  • Facilitate interviews with supports when needed

Post-Collection:

Dissemination:

  • Co-present with Autistic researchers
  • Use accessible language
  • Share results with participants and families, not just academic audiences

Strategy 6: Supporting Autistic Co-presenters

Comprehensive Support Phases:

Before Presentation:

  • Pay registration and travel expenses
  • Clarify each person’s role
  • Provide slides and artwork Support
  • Give clear instructions
  • Conduct dress rehearsals
  • Discuss Support preferences and anxiety triggers

At the Venue:

  • Stick to plans
  • Check environmental features of concern
  • Rehearse on-site
  • Minimize disruptions

During Presentation:

  • Maintain joint plans
  • Provide Support as discussed
  • Monitor energy levels and presentation length
  • Manage questions to allow adequate response time

After Presentation:

  • Provide quiet time away from social demands
  • Exchange feedback
  • Thank the person in writing/text/phone
  • Ensure safe departure
  • Pass on positive feedback received

Strategy 7: Addressing the Reproducibility Crisis

Pre-Registration of Study Designs:

  • Submit research protocols for peer review before conducting studies
  • Focus editorial decisions on methodological rigor rather than results
  • Eliminates incentives to cherry-pick positive results
  • Use platforms like ClinicalTrials.gov for protocol registration

Publishing Complete Datasets:

  • Include both included and excluded records with justification
  • Enables peer reviewers and future researchers to rerun analyses
  • Verify findings or conduct secondary analyses addressing different questions
  • Example impact: Editor Miyakawa requested raw data from 41 manuscripts—21 withdrew without data, 20 resubmitted with partial data, 19 rejected for insufficient data, only 1 accepted initially

Improving P-Value Education:

  • Teach that p-values require contextual interpretation rather than mechanical application of 0.05 threshold
  • American Statistical Association emphasizes statistical conclusions shouldn’t rest solely on p<0.05
  • Use language like “the effect of [X] on [Y] was statistically unclear” rather than “there was no effect”
  • Describe findings as “statistically unclear” rather than accepting null hypotheses

Strategy 8: Strengthening Peer Review Processes

Disclosure Requirements:

  • Require authors to declare if manuscripts were previously reviewed
  • Provide all prior reviewer reports to accelerate peer review
  • Build on prior feedback to improve manuscript quality

Quality Checklists:

  • Provide peer reviewers with standardized evaluation criteria
  • JBI has created 13 checklists for reviewing different study types
  • Include case control, cohort, RCTs, qualitative research, etc.

Training Programs:

  • Give postgraduate students and staff opportunities to participate in peer review under mentorship
  • This experience signals acceptance into scientific community
  • Builds skills often lacking in formal training

Qualitative Research Standards:

  • Clear literature reviews justifying qualitative approaches
  • Specific, relevant research questions
  • Detailed methodology describing interview guides, participant selection rationale, recruitment approaches
  • Data recording/transcription procedures and analysis methods
  • Participant sensitivity considerations and involvement in research design
  • Ethical presentation ensuring findings don’t stigmatize or harm Autistic participants
  • Succinct results with multiple participant quotes reflecting large sample proportions

The Path Forward: Building Inclusive Autism Research

Shifting Research Paradigms

The future of autism research requires fundamental paradigm shifts:

  1. From researcher-driven to community-driven questions - Research should address priorities identified by Autistic communities rather than assumptions about what matters
  2. From homogenous samples to representative diversity - Studies must reflect the full diversity of the Autistic community, including age, gender, race, ethnicity, intellectual ability, and co-occurring conditions
  3. From extractive to participatory models - Autistic people should be involved throughout research processes, not just as subjects
  4. From publication-focused to impact-focused - Success should be measured by real-world improvements in Autistic people’s lives, not just journal publications

Implementing Systemic Change

Funding Priorities:

  • Redirect funding from purely biological research to lifespan services and Support needs
  • Support participatory research infrastructure and Autistic researcher training
  • Fund studies specifically addressing underserved populations

Institutional Policies:

  • Require diversity reporting in all autism research publications
  • Mandate pre-registration and data sharing for funded studies
  • Implement standards for inclusive research practices
  • Support multidisciplinary Assessment teams in clinical settings

Community Partnerships:

  • Create advisory boards including diverse Autistic representatives
  • Develop community-based research partnerships
  • Ensure research dissemination reaches both academic and community audiences
  • Provide compensation for community expertise and participation

Measuring Progress

Indicators of Success:

  • Increasing diversity in research participant demographics
  • Growing representation of Autistic researchers
  • Improved Diagnostic accuracy across underserved populations
  • Better health outcomes and quality of life measures
  • Community satisfaction with research relevance and impact

Conclusion: Toward True Inclusivity

Addressing underserved populations in autism research is not merely about adding diversity to existing frameworks—it requires rethinking fundamental assumptions about autism, research, and knowledge production. The exclusion of Autistic seniors, women, fathers, individuals with intellectual disabilities, and racial/ethnic minorities has created a profoundly incomplete understanding of Autistic experience that perpetuates harm through inadequate services, missed diagnoses, and inappropriate Support.

By implementing participatory research practices, acknowledging diverse presentations, reforming Diagnostic procedures, and challenging systemic barriers, the autism research community can begin to address these gaps. The goal is not simply to include more diverse participants in existing studies, but to fundamentally transform how autism is understood, studied, and supported across the full spectrum of human diversity.

The strategies outlined in this resource provide concrete pathways for researchers, clinicians, funding organizations, and community advocates to work together toward a more inclusive, equitable, and accurate understanding of autism—one that serves all Autistic people, not just those who fit historical research paradigms.