Autism Moon: A 52-Week Journey

Research Design and Sustainability Model

Grant Overview

The American Psychological Foundation (APF) Direct Action Visionary Grants seek to fund innovative interventions, based on psychological knowledge, that directly address pressing needs of communities. APF Visionary Priorities: (1) serving marginalized communities, (2) ending prejudice and stigma, (3) preventing violence, and (4) exploring mind-body health connections.

Funding ProgramAPF Direct Action Visionary GrantMaximum AwardUp to $60,000
SponsorAmerican Psychological FoundationLOI DeadlineApril 30, 2026 (rolling quarterly)
InstitutionUniversity of ArizonaFull ProposalBy invitation; evaluated after September 8, 2026

Research

Family Adjustment Following Autism Diagnosis

Literature Review

A synthesis of twelve academic works was conducted to examine how families adjust following an autism spectrum disorder diagnosis. The review reveals that adjustment is not a linear trajectory from crisis to acceptance but a recursive, relationally embedded process shaped by ambiguity, affect regulation, and the ongoing renegotiation of meaning within the family narrative. The synthesis is organized around three themes:

Theme Key Finding Sources
Narrative Reconstruction
  • Diagnosis can produce biographical cohesion, not just disruption
  • American families face systemic barriers that predict disruption; Danish families more readily achieve coherence
  • Resolution moderated by child severity, cultural context, social support, and parental attunement
 Bury, 1982; Rasmussen et al., 2020; Lappé et al., 2018; Gray, 2002; Naicker et al., 2023
Affective Disruption
  • Ambiguous loss: the diagnosed family member is physically present but psychologically absent in unanticipated ways
  • Naming the ambiguity is itself therapeutic; adaptive posture holds grief and hope simultaneously
  • Brain's predictive models of significant others require iterative, neurobiologically costly updating
 Chase, 2022; Ratcliffe, 2020; Nowacka et al., 2025
Emotion Regulation as Mechanism
  • 90% of parent-mediated interventions target child behavior; almost none address family emotion regulation
  • Cognitive reappraisal training produces large effects (d = 0.86) on reflective reappraisal in parents
  • Loneliness exacerbates allostatic-interoceptive dysregulation; isolation creates a neurophysiological feedback loop
 Hendrix et al., 2022; Enav et al., 2022; Morris et al., 2017; Ma et al., 2026; Woodgate et al., 2008

Note. Synthesis includes twelve works: seven addressing the autism context directly (Rasmussen et al., 2020; Lappé et al., 2018; Chase, 2022; Naicker et al., 2023; Hendrix et al., 2022; Enav et al., 2022; Woodgate et al., 2008) and five providing theoretical scaffolding through biographical disruption theory, stigma, phenomenology of absence, co-regulation in child development, and loneliness neuroscience (Bury, 1982; Gray, 2002; Ratcliffe, 2020; Morris et al., 2017; Nowacka et al., 2025; Ma et al., 2026).

Problem and Purpose Statement

Problem Statement

Autism spectrum disorder diagnosis is followed by a period of family adjustment where identity, relationships, and imagined futures are reconciled. Despite evidence that cognitive reappraisal, social support, and shared meaning-making moderate reconciliation, no resources are provided to families to scaffold this process over time, contributing to family member isolation, identity disruption, and dysregulated adjustment.

Purpose Statement

Autism Moon: A 52-Week Journey is a community-sourced bibliotherapy intervention for families following a child's autism diagnosis. The book provides 52 weeks of content contributed by members of the autism community, designed to strengthen family cohesion, resilience, and communication. An embedded longitudinal research design evaluates the intervention's impact on family cohesion, conflict, and resilience across 1, 3, 5, and 10 year measurement time points.

The Study

Study Overview

ProjectAutism Moon: A 52-Week Journey for families following ASD diagnosis
Amount Requested$36,000
Intervention52-week bibliotherapy guide: art, poetry, psychoeducation, reflective prompts
ContributorsPaid contribution ($300) resourced from the Leadership and Education in Neurodevelopmental and Other Disabilities (LEND) nationwide network
AccessibilityBraille strip included on print edition; accessible audio on digital edition
DesignSingle-group longitudinal, repeated measures across 5 time points
Data CollectionQR code → REDCap (UofA, HIPAA-compliant), de-identified
SampleN = 80 parents/caregivers; child ASD diagnosis within 24 months
InstrumentsBFRS (16 items) + FRS6 (6 items); 22 items, ~5 min administration
 
Time PointsPre (Week 1), Post (Week 52), Year 3, Year 5, Year 10
 

Study Design

Recruitment N = 80 families
Book provided by MD at point of ASD diagnosis
Banner Neurodevelopmental Clinic
↓
Pre-Assessment (Week 1) BFRS (16 items) + FRS6 (6 items) via QR code
"Where I Am Now" chapter
↓
Intervention (Weeks 1–52) Autism Moon: A 52-Week Journey
52 chapters: art, poetry, prompts, psychoeducation
50 LEND community contributors
↓
Post-Assessment (Week 52) BFRS + FRS6 (22 items) via QR code
↓
Extended Follow-Up Year 3 · Year 5 · Year 10
BFRS + FRS6 via QR code
Escalating incentives for retention
↓
Organic Enrollment QR codes auto-generate in perpetuity
Every new reader becomes a potential participant
No additional recruitment cost · No grant dependence

Participant QR-to-Survey Experience

1. Open Book Week 1 or Week 52 2. Scan QR GUID auto-populated Family Survey Submit 3. Complete Survey 22 items · 5 minutes Thank you. Response Recorded. 4. Confirmation No PII collected REDCap (UofA CB2) AM-0042 pre 2, 1, 2, 0, 1... AM-0017 post 1, 2, 2, 1, 2... AM-0063 pre 0, 1, 1, 2, 1... HIPAA-Compliant 5. Data Stored De-identified · Audit trail · Researcher access only Researcher Dashboard Pre Post Yr3 Yr5 Yr10 N = 42 Enrolled 87% Completion Live Preview 6. Dashboard Live · Researcher access only

Product Sustainability

Concurrent to the research study, the physical and digital editions of Autism Moon will be available for purchase and download. The intention is a self-sustaining product cycle where revenues from the book fund the continued availability of the book in perpetuity, with all proceeds beyond production cost directed back to the funding organization.

Revenue Cycle

Reader Purchases print copy
or downloads digital (free)
→
Revenue $1 fixed margin
+ optional donation
→
Funding Org Donation directed back
to grant funder
← Sustains digital hosting + future research waves →

Sustainability Guarantees

Digital Access in Perpetuity Free download hosted on HF Spaces with custom domain. No ongoing grant dependence for distribution.
Print Revenue Funds Hosting The $1 margin and donations create a self-sustaining loop that outlives the initial grant period.
Donation Return to Funder All proceeds beyond production cost are directed back to APF. The funder invests in a project that feeds back to them.
Research Infrastructure at $0 QR-based data collection via UofA REDCap (HIPAA-compliant, institutionally supported). Statistics via Python. No licensing, no paid RAs, no platform fees.
10-Year Longitudinal Data Extended follow-up funded by earmarked incentives ($6,000 total across Year 3, 5, and 10). Produces a dataset unmatched in the autism family intervention literature.

The Product

Figure 1

Sample Book Page, Autism Moon: A 52-Week Journey

About Autism Moon A 52-Week Journey This book was written by 52 members of the autism community; parents, autistic adults, and professionals who understand what your family is experiencing right now. By completing the brief survey inside, you help build the research that makes this resource better for every family who comes after yours. There are no right or wrong answers. Just your family, right now, as you are. How to Participate in the Research Study 1. Scan the QR code on this page with your phone camera. 2. Complete the brief questionnaire (22 items, ~5 minutes). 3. Answer once per household. 4. You will be asked to complete this survey again at the end of the book (Week 52). An email reminder will be provided. Your responses are anonymous. No personal information is collected. Your unique QR code links only to a participant number, not your name, email, or any identifying details. Scan to begin survey 1 "There are no right or wrong answers. Just your family, right now, as you are."

Note. Mockup of Week 1 interior page. Final design by professional layout artist. Braille strip reads: "There are no right or wrong answers. Just your family, right now, as you are." QR code links to HIPAA-compliant REDCap survey with auto-populated participant ID and time point.

Figure 2

Sample Two-Page Spread: Contributor Week

Week 1 The Hidden Object Activity Steps 1. Reach In Select one object from the bag without looking. 2. Explore Feel the object. Notice its texture, weight, temperature, and shape. 3. Name It What do you think it is? Say it aloud before looking. 4. Draw Draw what you imagined. Then draw what you see. 5. Reflect How did what you felt shape what you expected? 6. Discuss What changed when emotion was introduced? Activity Overview This interactive activity demonstrates how emotional states (e.g., affect) influence cognitive processes, specifically visual perception and object representation. Through a series of hidden object representation and identification tasks, participants will experience how affect shapes attention, encoding, and memory retrieval. Learning Objectives • Identify the influence of emotional states on perceptual processes and attention. • Explain how affect impacts encoding and retrieval of information in clinical contexts. • Understand why working with clients experiencing elevated emotions requires special accommodations. Materials Needed • Bag with diverse hidden objects • Drawing paper and drawing instruments • Music (optional)

Note. Mockup of a sample contributor week. Each two-page spread features original content from one of 50 LEND network contributors. Braille strip on every page. Final design by professional layout artist.

Appendix A

Budget Summary: $36,000 Requested

Table A1

Proposed Budget: Autism Moon: A 52-Week Journey

Category Item Amount
Contributor Compensation50 LEND contributors × $300 each$15,000
Print ProductionPrototype copies (10-15, color, card stock)$450
Print ProductionResearch study copies (60+, color, card stock)$1,800
AccessibilityBraille strip embossing (all copies)$2,000
Design/LayoutProfessional book design, typesetting, print-ready files$3,000
Participant IncentivesYear 3 follow-up: 80 × $15$1,200
Participant IncentivesYear 5 follow-up: 80 × $25$2,000
Participant IncentivesYear 10 follow-up: 80 × $35$2,800
DisseminationINSAR 2027, registration$700
DisseminationINSAR 2027, travel + lodging (international)$3,500
DisseminationConference proceedings publication fee$500
Legal/AdminISBN registration$125
Contingency10% buffer$2,925
Total Requested $36,000

Table A2

In-Kind and Zero-Cost Infrastructure

Item Provider Cost
PI labor (coordination, development, analysis)PI (volunteer)$0
REDCap survey hosting (HIPAA-compliant)UofA CB2$0
Instrumentation (BFRS + FRS6)Open-access$0
Digital distribution (website + downloads)HF Spaces (free tier)$0
Statistical analysis softwarePython (scipy, statsmodels)$0

Appendix B

Assessment Battery: BFRS + FRS6 (22 Items)

Family Functioning Survey: Full Item Text

Part I: Brief Family Relationship Scale (BFRS)

Fok, C. C. T., Allen, J., Henry, D., & Team, P. A. (2014). The Brief Family Relationship Scale. Assessment, 21(1), 67-72.

Response scale: 0 = Not at all, 1 = Somewhat, 2 = A lot

Table B1

BFRS: Cohesion Subscale (7 Items)

# Item
1In our family we really help and support each other
2In our family we spend a lot of time doing things together at home
3In our family we work hard at what we do in our home
4In our family there is a feeling of togetherness
5My family members really support each other
6I am proud to be a part of our family
7In our family we really get along well with each other

Table B2

BFRS: Expressiveness Subscale (3 Items)

# Item
8In our family we can talk openly in our home
9In our family we sometimes tell each other about our personal problems
10In our family we begin discussions easily

Table B3

BFRS: Conflict Subscale (6 Items; Reverse Scored)

# Item
11In our family we argue a lot (R)
12In our family we are really mad at each other a lot (R)
13In our family we lose our tempers a lot (R)
14In our family we often put down each other (R)
15My family members sometimes are violent (R)
16In our family we raise our voice when we are mad (R)

Part II: 6-Item Family Resilience Scale (FRS6)

Chow, K. M., Tang, W. K. S., Chan, W. H. G., Sit, W. H. J., Choi, K. C., & Chan, S. (2024). A 6-item Family Resilience Scale (FRS6) for measuring longitudinal trajectory of family adjustment. Behavioral Sciences, 14(3), 251.

Response scale: 1 = Strongly disagree, 2 = Disagree, 3 = Agree, 4 = Strongly agree

Table B4

FRS6: Family Resilience Items (6 Items)

# Item Factor
17We can compromise when problems come upCommunication & Connectedness
18We can talk about the way we communicate in our familyCommunication & Connectedness
19We define problems positively to solve themCommunication & Connectedness
20We discuss problems and feel good about the solutionsCommunication & Connectedness
21We can survive if another problem comes upPositive Framing
22We feel people in this community are willing to help in an emergencyExternal Resources

Scoring Summary

Subscale Source Items Range Scoring
CohesionBFRS1-70-14Sum; higher = greater cohesion
ExpressivenessBFRS8-100-6Sum; higher = greater expressiveness
ConflictBFRS11-160-12Reverse score, then sum; higher = less conflict
ResilienceFRS617-226-24Sum; higher = greater resilience

Note. Total administration time: approximately 5 minutes (22 items). Administered via QR code at five time points: Pre (Week 1), Post (Week 52), Year 3, Year 5, Year 10. Both instruments are open-access and free for research use with attribution.

Autism Moon: A 52-Week Journey | Grant Proposal Figures | April 2026