Parental Denial, Acceptance, and Autism Support in Canada

Navigating Systems of Care: How Parental Denial and Acceptance Shape Access to Autism Support in Canada

SOSA3403: Qualitative and Field Methods | Dream Proposal Seminar

Ava Little

May 1, 2026 | Dalhousie University

Research Focus

How do families navigate systems of care for autism over time?

Limited research on what happens AFTER diagnosis — how families move through healthcare, education, and institutions

In Canada, support spans a broad network: schools, workplaces, healthcare institutions

Families must navigate multiple complex systems, each with its own barriers

Key focus: How parental denial OR acceptance of autism diagnosis shapes access to support

Why This Matters

Access to autism support is not equal

Parents become coordinators of care — navigating multiple complex systems

Families face psychological stress, stigma, and lack of support

Gap exists between what families NEED and what systems PROVIDE

Improving support = not just more resources, but making systems easier to navigate

Literature Review

Geographical Barriers

Rural families face delays: limited access to specialists, knowledge gaps, staffing issues

Economic Barriers

Financial resources determine access to private services; others wait years

Institutional Barriers

Fragmented systems, lack of coordination across services

The Gap

Limited research on how parental <strong style="font-weight: 800;">PERCEPTION</strong> (denial/acceptance) shapes navigation over time → <span style="font-style: italic;">This is what this study addresses</span>

Min. 7 external scholarly papers referenced (Cermak et al., Fong et al., Zeidan et al., Coombs et al., Naicker et al., Chun et al., Lamoureux & Seifert)

Methodology

Reflexive Ethnographic Approach — Burawoy's Extended Case Method

Connects individual experience to larger social structures

Recognizes that power dynamics influence what is shared and how experiences are understood

Research through this lens is a conversation between the observer and the observed

Burawoy, 1998

Methods

SEMI-STRUCTURED INTERVIEWS

(primary)

Guided questions + space for participants to share in their own words. ~45 min each.

STRUCTURED QUESTIONNAIRES

Allow comparison across participant groups (Likert scale + open-ended).

UNSTRUCTURED INTERVIEWS

Natural conversations for sensitive topics: denial, family dynamics, conflict.

PILE SORTING

Participants group concept cards (e.g. 'denial,' 'waitlists,' 'stress') to reveal how they understand their experiences.

Sample

Total: 60 Participants Across Canada

Enables comparison across different provincial policy systems and access structures

Ethics

Sensitive topic — emotional hardships when discussing diagnosis, denial, family conflict

Voluntary participation

Informed consent required

Participants may withdraw at any time

Non-judgmental interview approach

Confidentiality — identifying information removed

Reflexive approach — participants are not data points, but individuals with valuable experiences. Power imbalances acknowledged.

Budget

3-Year Multi-Site Study | Estimated Total: ~$200,000 CAD

Living costs (3 years)

~$150,000

Travel between provinces

~$8,814

Transcription services (GoTranscript)

~$4,400

Qualitative analysis software (NVivo)

~$4,275

Participant compensation (60 × $50)

~$3,000

Research assistant (500 hrs)

~$10,000

Dissemination / conferences

~$6,000

Open access publishing

~$3,000

Equipment & supplies

~$2,000+

Estimated Total

~$200,000 CAD

Budget reflects scope of a large-scale qualitative research project across Canada

Limitations

Parents in denial may be difficult to recruit — they may feel judged or avoid sensitive topics

Social desirability bias — participants may respond in expected ways rather than honestly

Qualitative findings are not fully generalizable — depth over breadth is the goal

Consistent with existing qualitative research limitations (Bernard, 2017)

Purposive + snowball sampling used to address recruitment challenges

Conclusion

Barriers to autism support are NOT only structural — they are also shaped by everyday relationships, communication, and perception

Parents play a central role as decision-makers AND navigators of care

Parental denial, uncertainty, or acceptance DIRECTLY influences access to support

Shifts focus: barriers are produced through interaction between families and institutions — not just top-down systems

Significance & Dissemination

Explains WHY access to autism support remains unequal — even when resources exist

Improving access requires: policy change + better communication + collaboration + family support

Shifts perspective: barriers arise through interaction, not just structure

Academic journals

Conference presentations

Community reports (accessible beyond academic spaces)

Online summaries for families

This research is for the families, practitioners, and autistic individuals who navigate these systems every day.

Ava Little

SOSA3403