A comprehensive parent training program for parents of neurodivergent children with pathological demand avoidance: The Paradigm Shift Program^® Pilot Study

ABSTRACT

Importance

Although pathological demand avoidance (PDA; also known as “extreme” or “persistent” demand avoidance and persistent drive for autonomy) was first described in 1980 as a distinct behavioral profile among a subgroup of children with autism spectrum disorder, there is limited scientific evidence to support children with PDA or their parents/guardians.

Objective

To establish the feasibility and acceptability of the Paradigm Shift Program^®, a 12‐week educational and training program for parents and guardians of children with PDA.

Methods

Seventy‐six parents/guardians of children with PDA were enrolled in the study. Prior to the start of the program, the parents/guardians completed a baseline assessment (demographic questions, program expectations, and several patient‐reported outcomes [PROs] and proxy measures). At the end of the program, parents/guardians repeated the PROs and proxy measures, and completed a feasibility and acceptability questionnaire and anchor items.

Results

A total of 71 parents/guardians completed the pre‐program assessment, and 60 (85%) completed the end‐of‐program assessment. Among those with both assessments, program acceptability was high, and parents/guardians were generally satisfied with the different program elements (level of agreement >70% for agreed or strongly agreed). Parents/guardians reported significant improvement in health‐related quality of life (HRQOL) in 10 of the 13 PROs (all P < 0.05). Parent/guardian proxy reports also indicated significant improvements in demand characteristics (P < 0.05), as well as a trend for significant improvement in conduct problems (P = 0.08), total difficulties (P = 0.05), and externalizing behavior (P = 0.05), in their child with PDA.

Interpretation

The paradigm shift program was both feasible and acceptable. Furthermore, there was evidence that this program improved the HRQOL of parents/guardians as well as the behavior of children with PDA.

The Paradigm Shift Program, a comprehensive training program for parents of neurodivergent children with pathological demand avoidance (PDA), was feasible and acceptable, and there were significant improvements in parents’ well‐being following program completion. As the first examination of a parent‐focused intervention for PDA, results suggest a promising alternative to traditional programs.

INTRODUCTION

Pathological demand avoidance (PDA; also known as “extreme” or “persistent” demand avoidance and persistent drive for autonomy) was first described in 1980 by Elizabeth Newson, a UK developmental psychologist, as a distinct behavioral profile among a subgroup of children with autism spectrum disorder (ASD). The most commonly reported PDA features include a behavior pattern of extreme resistance to and avoidance of regular life demands, and using ‘social manipulation’ strategies to avoid these demands. ¹ Children with PDA may exhibit intense emotions, mood swings, and an extreme need for control. Such behaviors are thought to be driven by high anxiety or an automatic ‘threat response’ when faced with demands. ² , ³ When these children are unable to avoid or cope with demands, they often experience meltdowns (best understood as panic attacks) or aggressive outbursts, leading to severe challenges both at home and in school. Newson noted that although these behaviors were atypical among children with ASD, they were commonly observed among children in their studies. Thus, in her seminal 2003 publication, Newson and colleagues argued that PDA should be considered “…a separate entity within the pervasive developmental disorders” because of numerous differences between PDA and both classic autism and Asperger's syndrome, including a roughly equal distribution of PDA cases between boys and girls. ¹ PDA has yet to be formally recognized as a valid diagnosis in the United States, although it is recognized as a behavioral profile of the autism spectrum in Australia. ⁴

While interest in PDA has increased among practitioners, clinicians, and researchers in recent years, bolstered by discussions through parent forums and published testimonies of adults with lived experiences of having PDA, peer‐reviewed research is limited, and there is a call for more clinical studies. ⁵ , ⁶ , ⁷ The lack of sufficient scientific evidence has prevented PDA from becoming a recognized diagnostic category in either the American Diagnostic and Statistical Manual of Mental Disorders (DSM; American Psychiatric Association) ⁸ or the European International Classification of Diseases (ICD; World Health Organization) ⁹ diagnostic reference manuals. Advocates who promote recognition of PDA consider it to be a potential profile or subtype of autism, ¹⁰ but others posit that PDA may be a “distinct neurotype or neurological difference” that is not limited to the autism spectrum or other neurotypes, such as attention deficit hyperactivity disorder (ADHD). ⁵ Some studies have suggested that PDA may not be a unique condition but rather a set of symptoms. ¹¹ , ¹² Finally, autism researchers and autistic self‐advocates argue that ascribing a PDA profile to individuals with ASD undermines their agency and self‐advocacy, proposing instead that the observed behaviors are driven by “rational” demand avoidance. ¹³

One unique and troubling aspect of these demand‐avoidance behaviors is the inability to access basic human needs that are central to health and well‐being, including eating, sleeping, toileting, and personal hygiene. ¹⁴ , ¹⁵ Even though some children with demand avoidance may possess the ability to perform these functions, their extreme nervous system activation causes their bodies to shut down, leaving them unable to eat, use the bathroom, brush their teeth, etc. ¹⁶ , ¹⁷ , ¹⁸ There are currently no published studies on PDA‐specific parent training interventions, nor are there evidence‐based treatments for PDA. The limited literature in this space suggests that existing behavior management approaches typically recommended for children with ASD are not only inadequate for children with a PDA profile, but also risk further nervous system activation and trauma for these children. ¹⁹ Without a diagnosis or supportive resources and services in school and healthcare settings, parents and guardians of children with PDA are often left feeling alone and inadequate to address their children's needs. ¹⁷

Based on the lived experience with PDA in her own family and her coaching practice with parents of children and teens, Dr. Casey Ehrlich developed the Paradigm Shift Program^®, a comprehensive virtual support program for parents and guardians of children with PDA. This 12‐week virtual program includes weekly 2‐h live online sessions (six education and training sessions, five question and answer sessions, and a final wrap‐up session), and an intensive workshop on how to implement accommodations in daily life (three additional 2‐h sessions, and two 90‐min office hour sessions). The Paradigm Shift Program^® teaches participants about the neurobiological and nervous system differences commonly observed in PDA and provides neurodiversity‐affirming caregiving approaches to aid their child with PDA in accessing social communication, learning, basic health, and survival needs, as well as social connections (see File S1 for the course curriculum). The program also provides access to a private online community of other program enrollees and additional educational materials (including other pre‐recorded workshops and educational handouts).

Although the Paradigm Shift Program^® aims to provide effective tools to help parents/guardians navigate the challenges of raising a child with PDA, it has not been formally assessed prior to this study. Thus, our primary objectives were to 1) establish the feasibility and acceptability of the Paradigm Shift Program^®, 2) examine the impact of the Paradigm Shift Program^® on the self‐reported mental, physical, and social health of parents/guardians of children with PDA, and 3) examine the impact of the Paradigm Shift Program^® on proxy‐reported symptoms, mental health, and social health of children with PDA.

METHODS

Ethical approval

This study was approved by IRB‐MED at the University of Michigan (HUM00245983). Informed consent was obtained from all participants prior to study commencement.

Participants

Parents and guardians of children with PDA participated in this study. Parents/guardians had to be at least 18 years old, able to read and understand English, enrolled in the Paradigm Shift Program^®, and self‐identify that their child (aged 4–17 years) had a PDA profile. All parents/guardians enrolled in the January 2024 Paradigm Shift Program cohort were invited to participate in this study. In cases in which more than one parent/guardian participated in the program, both were eligible to participate in this study.

Paradigm Shift Program^®

The Paradigm Shift Program, developed by Dr. Casey Ehrlich, PhD, is a comprehensive support program for the parents and guardians of children with PDA. As described above, this 12‐week virtual program includes weekly live online sessions, an intensive workshop targeting the implementation of accommodations in daily life, access to a private online community of other program enrollees, and additional educational materials. The program teaches parents/guardians how to accommodate their children with PDA in ways that reduce cumulative nervous system activation. Such accommodations improve a child's ability to connect with loved ones, endure necessary and desired demands, and access basic human needs. As implementing this process takes time, the program simultaneously teaches parents/guardians coping mechanisms and mindset shifts to enable them to endure the extraordinary caretaking and accommodation challenges they face.

Specifically, the program teaches parents/guardians the following: 1) Awareness: How the PDA brain works; 2) Acceptance: Decision‐making within the constraints of the PDA nervous system; 3) Accommodation: Supporting the Child's PDA Nervous System; 4) Affirmation: Affirmation and identity for the child with PDA; and 5) Advocacy: Creating safety outside of the home for the PDA nervous system.

Study design

Study participation involved the completion of both the baseline and end‐of‐program surveys. Participants were compensated $30 for completion of the baseline survey and $40 for completion of the end‐of‐program survey. Survey data were collected using REDCap, an online data‐collection platform. The participants were required to provide informed consent prior to their participation in the study. The program leader (Dr. Ehrlich) was blinded to all participants.

Measures

Demographic items (baseline only): This study‐specific 32‐item survey was designed to capture demographic information about participants and their children with PDA.

Expectation of change (baseline only): Participants were asked to complete ten questions addressing their expectations of program efficacy. These questions asked about the logical (rated on a scale of 1–9, with higher scores indicating more logical), useful (rated on a scale of 1 to 9, with higher scores indicating more usefulness), and successful (rated on a scale of 1 to 9, with higher scores indicating more success) participants thought the program would be as well as how much improvement participants expected to see in both their own and their children's lives (rated on a scale of 0%–100%).

Health‐related quality of life (HRQOL): Participants completed 13 patient‐reported outcome (PRO) item banks from the PROs Measurement Information System (PROMIS), Neuro‐QoL, and NIH Toolbox measurement systems, including Depression, Anxiety, Anger, Positive Affect and Well‐Being, Self‐Efficacy‐General, Ability to Participate in Social Roles and Activities, Satisfaction with Social Roles and Activities, Emotional Support, Physical Function, Fatigue, Sleep Disturbance, Caregiver Strain (adapted for the current study), and Perceived Stress. ²⁰ , ²¹ , ²² , ²³ , ²⁴ , ²⁵ , ²⁶ , ²⁷ These measures were scored on a t metric (Mean [M] = 50, standard deviation [SD] = 10), with higher scores indicating more of the named construct (higher scores for positively worded concepts indicate better HRQOL, whereas higher scores for negatively worded constructs indicate worse HRQOL).

The Extreme Demand Avoidance Questionnaire‐8 (EDAQ‐8) ²⁸ , ²⁹ : This is an 8‐item proxy assessment of the presence of PDA‐specific traits. Sum scores range from 60 to 317, with higher scores indicating more PDA‐specific traits.

The Childhood Autism Spectrum Test (CAST) ³⁰ : This was a 39‐item proxy assessment of autism severity. Sum scores range from 0 to 31, with higher scores indicating greater ASD severity and scores >15 indicating possible ASD.

The Strengths and Difficulties Questionnaire (SDQ) ³¹ , ³² : This is a 25‐item proxy behavioral screening questionnaire for children with PDA (separate forms are provided for children ages 4–10 and 11–17). Sum scores on this measure range from 0 to 40, with higher scores indicating greater difficulty.

PROMIS Parent Proxy Scale v1.0 – Global Health 7+2 ³³ : This is a 9‐item proxy assessment of a child's physical, mental, and social health. In addition, it includes a single item asking parents to rate how often their child tired easily in the past seven days, as well as a single item asking parents to rate how often their child had trouble sleeping when they had pain. This measure generates two scores: a global mental health score and a global physical health score, as well as separate scores for fatigue and pain items. Scores are on a t metric (M = 50, SD = 10), with higher scores indicating better health.

Feasibility & acceptability questionnaire: This study‐specific feasibility survey assesses the experience of the participant with different elements of the program, including the online discussion forum, live training sessions, and online multimedia materials (private podcast, pre‐recorded training videos, and written materials). This measure was based on other measures of feasibility and acceptability that have been used in the literature ³⁴ , ³⁵ , ³⁶ , ³⁷ , ³⁸ and was completed as part of the post‐program assessment survey. This questionnaire is comprised of Likert‐scale questions that rate: 1) level of agreement: where 0 = “did not use,” 1 indicates “strong disagreement,” and 5 indicates “strong agreement;” 2) frequency: where 1 = “never” and 5 = “always;” and 3) checklist endorsement of different teaching elements.

Anchor items: 25 questions about whether the participant had noticed any changes in their or their child's functioning since the last time they completed the questionnaire.

Sample size justification: Given that there are no formal power analysis calculations for this type of study, we propose that a sample size of around 40 would provide sufficient numbers and study sample diversity to evaluate feasibility and acceptability. ³⁹

Statistical analyses

Demographic data: Frequency data were reported for the different study demographic variables ([M ± SD] for normally distributed continuous data and frequency counts for categorical data). Those who completed at least part of the post‐program assessment were compared with those who did not use paired t‐tests/ANOVA (continuous variables) or Chi‐squared analyses (categorical variables). P < 0.05 was considered statistically significant.

Compliance: We calculated the percentage of participants who completed at least one portion of the post‐program assessment; ≥70% completion rates were expected to support feasibility and acceptability.

Feasibility and acceptability: We examined responses to individual items on the feasibility and acceptability of the questionnaire. Feasibility and/or acceptability would be demonstrated by endorsements ≥70% for responses indicating either “Agree” or “Strongly Agree” for the different program components, or ≥70% for responses indicating “Sometimes,” “Usually,” or “Always” for the different activities.

Preliminary effectiveness analyses: Although this trial was not powered to examine effectiveness, we conducted exploratory analyses to identify trends for improvement in HRQOL scores. We conducted a series of paired t‐tests for each HRQOL and proxy‐reported measure. We also conducted a series of linear regression models to explore whether participant baseline reports for expectations of change were significantly associated with post‐program parent/guardian outcomes and outcome measures for children with PDA; these analyses controlled for pre‐program outcome scores.

RESULTS

Program feasibility

Seventy‐six participants were enrolled in this study and completed the baseline demographic form. Of these individuals, 71 completed at least one baseline survey measure (93%) and 60 completed at least one follow‐up survey (79%). Of the 60 participants who completed the follow‐up, 85% indicated that they had completed the program, supporting overall acceptability. The demographic data for the study participants are shown in Table S1.

Program acceptability

Tables S2, 1, and 2, provide a summary of the participant response data about their overall level of engagement with the program, their satisfaction with the different program elements, a summary of the program elements they found most helpful, and the overall impact of the program on both the parents/guardians and their child with PDA's HRQOL, with a number of positive impacts noted. In general, most of the program elements were rated favorably by participants (i.e., ≥70% indicating ratings of sometimes/usually/always or agrees/strongly agree), except for elements related to tracking indicators (ratings ranged from 32% to 61%) and engaging with the online community (ratings ranged from 31% to 50%).

TABLE 1.

Proportion of participating parents/guardians who reported a change in self‐reported HRQOL from baseline (n = 60)

Items	Better + Much Better (>70%)
My mood is…	73
My level of anxiety is…	62
The amount of anger I feel is…	69
My participation in social activities is…	29
My level of social support is…	30
My satisfaction with my relationship with my child with PDA is…	81
My level of fatigue is…	40
My sleep is…	37
My caregiver burden is…	33
My level of stress is…	51
My level of happiness and well‐being is…	59
My confidence in my ability to help my child is…	92
My connection with my child is…	81

Abbreviation: HRQOL, health‐related quality of life; PDA, pathological demand avoidance.

TABLE 2.

Proportion of participating parents/guardians who reported a change in self‐reported child behavior from baseline (n = 60)

Items	Better + Much Better (>80%)
My child's behavior is…	64
My child's behavioral outbursts are…	70
My child's ability to access his/her basic needs is…	51
My child's ability to access his/her stickiest basic need is…	36
My child's threshold of tolerance is…	52
My child's mood is…	59
My child's level of anxiety is…	46
My child's level of happiness and well‐being is…	58
My child's understanding of PDA is…	41

Table S3 provides a summary of the different learning elements of the program and the elements that the participants used and/or found helpful. Here, a similar pattern of results was found; the majority of participants (≥70%) reported that they understood and practiced the different program elements. Again, the exceptions were that less than 70% of participants indicated that they understood how to track indicators (68%), actually tracked indicators for their child (48%–55%), or found this program element helpful (55%). Further, only 30% indicated that they talked with their child about naming their threat response or found this to be helpful, and only 50%–62% reported being able to set appropriate boundaries with other people, with only 43%–58% finding these things to be helpful. Participants also generally did not practice using a mantra and found it helpful (45%). Regarding specific accommodations, ≥70% of participants indicated trying all the recommended accommodations, with the most helpful accommodations being lowering demands, novelty, and coregulation.

Preliminary effectiveness

Pre‐/post‐program comparisons for parent/guardian HRQOL, proxy HRQOL, and behavioral assessments for children with PDA are reported in Table 3. In general, parents/guardians demonstrated significant HRQOL improvements following completion of the program (parents/guardians improved in 10 of the 13 HRQOL domains that were assessed, P < 0.05). In addition, children with PDA demonstrated significant improvements in demand characteristics; non‐significant behavioral improvements were seen in all domains of the SDQ, and there was a trend for significant improvement in conduct problems (5.2 ± 2.0 vs. 4.8 ± 1.9; P = 0.0803), total difficulties (22.2 ± 4.4 vs. 21.0 ± 4.9; P = 0.0549), and externalizing behaviors (12.8 ± 3.6 vs. 12.2 ± 3.5; P = 0.0540). Pre‐program expectations of change were generally not related to post‐program outcomes, but there were a few exceptions: pre‐program expectations for child improvement were related to post‐program parent/guardian depression, and pre‐program expectations for parent/guardian improvement were related to parent/guardian sleep outcomes (Table S4).

TABLE 3.

Pre‐ and post‐program comparisons in parents and children

Variables	Baseline	Follow‐up	t	P‐value	Effect size
Caregiver HRQOL
Caregiver strain	62.8 ± 6.5	58.7 ± 5.6	5.61	<0.0001	0.64
Perceived stress	64.9 ± 7.8	59.9 ± 7.8	4.79	<0.0001	0.61
Anger	60.0 ± 6.4	56.5 ± 6.3	3.91	0.0002	0.54
Anxiety	62.5 ± 6.2	59.0 ± 5.1	4.06	0.0001	0.60
Depression	60.4 ± 6.9	57.2 ± 6.1	3.93	0.0002	0.48
Self‐efficacy	46.1 ± 7.6	47.5 ± 8.7	−1.18	0.2437	0.17
Positive affect	37.3 ± 7.4	40.4 ± 6.7	−2.96	0.0045	0.43
Ability to participate in social roles and activities	36.7 ± 6.1	38.7 ± 5.7	−2.78	0.0074	0.33
Satisfaction with social roles and activities	39.0 ± 5.0	40.8 ± 4.7	−3.27	0.0019	0.37
Emotional support	48.0 ± 8.1	48.4 ± 9.2	−0.59	0.5610	0.05
Physical function	45.4 ± 8.4	45.3 ± 7.4	0.23	0.8173	0.02
Fatigue	61.3 ± 7.7	58.2 ± 8.2	2.82	0.0067	0.38
Sleep disturbance	54.6 ± 8.2	52.6 ± 7.3	2.07	0.0435	0.25
Child with PDA
Proxy‐reported global health	37.1 ± 8.9	37.5 ± 8.2	−0.42	0.6793	0.04
Proxy‐reported global fatigue	57.2 ± 7.5	56.2 ± 7.6	0.87	0.3884	0.13
Strengths & Difficulties Questionnaire (SDQ)
Conduct Problems Scale	5.2 ± 2.0	4.8 ± 1.9	1.79	0.0803	0.18
Hyperactivity Scale	7.6 ± 2.4	7.4 ± 2.4	1.17	0.2476	0.10
Peer Problems Scale	3.9 ± 2.4	3.7 ± 2.4	0.73	0.4694	0.07
Prosocial Scale	5.1 ± 2.4	5.4 ± 2.4	−1.22	0.2286	0.12
Total Difficulties Score	22.2 ± 4.4	21.0 ± 4.9	1.97	0.0549	0.27
Externalizing Score	12.8 ± 3.6	12.2 ± 3.5	1.98	0.0540	0.18
Internalizing Score	9.3 ± 3.1	8.7 ± 3.1	1.43	0.1583	0.18
Childhood Autism Spectrum Test (CAST)	16.4 ± 5.1	15.9 ± 4.6	1.04	0.3046	0.09
Extreme Demand Avoidance Questionnaire‐8 (EDAQ‐8)	17.5 ± 4.5	16.2 ± 5.4	2.44	0.0185	0.27

Data from 59 participants were used for analysis. Data were shown as mean ± standard deviations.

Abbreviation: HRQOL, health‐related quality of life.

DISCUSSION

The Paradigm Shift Program^® was both feasible and acceptable, and parents/guardians showed significant improvements in numerous HRQOL domains following this 12‐week program. Regarding feasibility and acceptability, 85% of the parents/guardians indicated that they completed the program, which supports overall acceptability. Parents/guardians also indicated support for logging into the website, attending weekly sessions, and practicing the techniques taught. They also found the weekly live sessions useful, as well as the spot coaching offered. In addition, 90% of parents/guardians indicated that they 1) took action as a result of the program, 2) felt that the program improved their mental health, 3) felt more confident in their ability to de‐escalate and mitigate risk regarding their child's behavior, and 4) felt that their relationship with their child improved.

Program elements that were less frequently used (or were reported as being less helpful) included the online community (some participants found it difficult to navigate) and tracking indicators for their children (only 32% of parents found the PDA workbook useful). Parents/guardians also did not believe that the program improved their social or physical health or overall stress/burden. Finally, parents/guardians did not believe that their child's behavior improved as a result of the program, except for behavioral outbursts. It is important to note that these subjective reports were not fully consistent with the findings on standardized measures of these constructs.

Regarding the knowledge‐based concepts that were taught as part of the program curriculum, parents/guardians reported an increased understanding of PDA, including being able to explain the following concepts to others: PDA as a nervous system disability, equalizing behavior, masking, internalized expression, externalized expression, a survival drive for autonomy, and the need for equality. In addition, parents reported practicing most of the different elements that were taught by the program, including radical acceptance, implementing a sacred pause, and applying a cost‐benefit analysis to making decisions; parents also found these program components helpful. In terms of accommodation, parents indicated that they practiced all the different elements of the program, including lowering demands, using declarative language, humor, novelty, and one‐on‐one play, allowing their child to opt out, diffusion, self‐deprecation, strewing, and physically placing themselves below their child. Parents also found these elements helpful, except for one‐on‐one play, self‐deprecation, and physical placement below their child.

There were also some program elements that some parents failed to practice or found helpful. These included tracking their child's indicators, setting boundaries, pruning out unhealthy relationships, naming their child's threat response, and using a mantra. Indicator tracking is a time‐intensive technical skill that requires translating complex qualitative situations into quantitative and measurable indicators that can be tracked. We speculate that parents found this both difficult and complex to do independently; hence, there was an overall lack of enthusiasm for this program element. This is consistent with the broader behavioral intervention literature, which finds a negative relationship between program component complexity and fidelity. ⁴⁰ In addition, the program content about setting boundaries and pruning unhealthy relationships was presented at the end of the program, which did not give parents/guardians the opportunity to implement these strategies in their daily lives. Anecdotally, a number of parents/guardians in the program identified their own trauma history and reported a “fawn” response in social situations (i.e., a trauma‐related coping mechanism that involves people‐pleasing behaviors to avoid conflict), likely making it difficult for them to practice this type of skill. We postulate that naming their child's threat response is not developmentally appropriate for younger children, and given the fact that 42% of our sample involved parents/guardians of children younger than 9, this skill might not yet be practical. This is consistent with the literature that indicates that children's self‐awareness of their own mental health condition occurs most frequently in early adolescence (ages 10–14). ⁴¹ In addition, this type of skill can only be implemented/practiced among parents/guardians of children who are not in crisis; thus, even among parents of older children, it is unlikely that children and teens with PDA will be ready to discuss or name the threat response or their identity during the 3‐month timeline of the program (i.e., this skill is more likely to be relevant 6–12 months post‐program completion). Finally, we speculate that using a mantra may not be as effective given the high levels of distress these parents/guardians experience, which requires a certain level of patience that is likely difficult for parents to access during times of extreme stress (i.e., when a child is in crisis mode or having a meltdown). This speculation is consistent with the caregiving literature, which has shown that heightened stress and anxiety are common obstacles to practicing mindfulness. ⁴²

Although this study did not examine the effectiveness of the Paradigm Shift Program^®, our preliminary effectiveness analyses found that parents/guardians exhibited statistically significant improvements across multiple HRQOL domains following this 12‐week program. Specifically, parents showed decreases in caregiver burden, stress, anxiety, depression, anger, fatigue, and sleep disturbance, and increased positive affect and well‐being, ability to participate in social roles and activities, and satisfaction with social roles and activities. There were no differences in self‐efficacy, emotional support, or physical function between groups. In addition, parents indicated that their children exhibited a trend toward improvement in conduct problems, total difficulties, and externalizing behaviors. They also indicated improvements in demand avoidance. There were no improvements in children's global health, hyperactivity, peer problems, prosocial behavior, internalizing, or autism symptoms. Given that this is a parent‐facing intervention, findings for improved parental HRQOL are extremely promising, especially those improvements in mental and social health. The absence of improvements in physical health is not surprising, given that this program does not include any elements that target physical activity. Furthermore, improvements in children's externalizing behaviors and demand avoidance are promising. Future work is needed to replicate these findings in a larger sample, compare the findings to a control group to establish program efficacy, and evaluate whether the potential gains observed in this study are retained post‐program. Finally, pre‐program expectations of change were not related to post‐program outcomes. Notable exceptions to this finding include that pre‐program expectations for child improvement were related to post‐program caregiver depression, and pre‐program expectations for caregiver improvement were related to caregiver sleep outcomes.

This is the first examination of a parent‐focused educational intervention designed to teach parents/guardians of children with PDA how to shift their thinking away from traditional parenting paradigms toward radical acceptance and accommodation. While these results are promising and offer an alternative to existing parent education programs, there are several study‐specific weaknesses that warrant acknowledgement. First, it was an examination of a cohort enrolled in the program voluntarily and paid to participate in the program. As a result, this sample was more highly educated and had more socioeconomic means than the general population. Second, the sample was predominantly White. Whether the findings are generalizable to minority or more disadvantaged populations is still unknown. Finally, given that this study focused primarily on feasibility and acceptability, it did not employ a control group; thus, future work that employs a randomized controlled trials is warranted.

Taken together, our findings strongly support the feasibility and acceptability of this Paradigm Shift Program. Parents/guardians practiced most of the techniques taught by the program and reported that the majority of these elements were both understandable and helpful. Furthermore, the program was effective in improving parent/guardian HRQOL, as well as child demand avoidance and externalized behaviors associated with a PDA profile. Given these findings, further research is needed to establish the efficacy of this program in improving caregiver outcomes for the parents and guardians of children with PDA.

CONFLICT OF INTEREST

Noelle E. Carlozzi previously served as a consultant for Teva Pharmaceuticals Industries and as an advisor for the 15‐year congressionally mandated Traumatic Brain Injury study. She is also a scientific advisor for the CHDI Foundation. Wendy L. Lombard, Jonathan P. Troost, Christopher M. Graves, and Jennifer A. Miner certify that they have no conflicts of interest. Casey Ehrlich is the founder and CEO of Peaceful Parents, which offers both free and paid resources and services for PDA families. Casey Ehrlich provided information about the study to the Paradigm Shift Program^® participants and provided input into the study design, but was blinded to client participation in the study. Individuals were not required to participate in the study to participate in the Paradigm Shift Program^®. The University of Michigan IRBMED determined Casey Ehrlich's company, At Peace Parents, was not “engaged” in the research, and their Conflict of Interest ancillary board determined no COI management was necessary given the nature of Casey Ehrlich's involvement.

Supporting information

Supporting Information

Supporting Information