76.2% of Households with Orthostatic Dysregulation (OD) Anxious About "Advancement to Higher Grades/Schools"; 90% of Children Affected in School Attendance

Many parents of children diagnosed with Orthostatic Dysregulation (OD) are deeply concerned and anxious about "relationships with schools" and "impact on future career paths" more than handling the condition at home. As the first semester passes its midpoint and the accumulation of absences becomes apparent in June, the Japan Association for the Improvement of Orthostatic Dysregulation (OD) conducted a "Survey on the Reality of School Support" targeting 105 guardians living with children with OD. The results revealed that while school accommodations have progressed to a certain extent, approximately 80% of households are anxious about advancing to higher grades or schools, and the daily burden of reporting absences has become significant. This report conveys the earnest voices of affected families, highlighting the need to deepen understanding in educational settings, recognizing OD not as "laziness" but as a "physical illness."

Survey Background

Orthostatic Dysregulation (OD) is a physical illness characterized by difficulties in waking up in the morning, dizziness upon standing, and general malaise due to autonomic nervous system abnormalities. While previous OD surveys have often focused on "how to deal with it at home," the most significant social barrier faced by children and parents is the interaction with "the educational environment." Visualizing the reality of school support, such as "anxiety about absences and tardiness affecting school records" and "frustration from not being recognized as ill by teachers," is essential to prevent isolation of parents and children and to promote understanding in educational settings. This survey was conducted from the perspective of parents during this period when anxiety about advancing to higher grades and attendance days intensifies, to understand the "current situation" in schools.

Survey Summary

Impact of OD Symptoms: Approximately 60% of children experience effects "several times a month or more," indicating unstable daily conditions with fluctuating health.

School Understanding: About 70% responded that there is "understanding and consideration," while approximately 15% feel a lack of understanding.

Support Received: "Resting in the nurse's office (18.8%)" was the most common response, indicating a need for concrete environmental improvements beyond just mental care.

Difficulties with School Support: "Burden of reporting absences each time (14.9%)" was the top concern, with mental and administrative burdens weighing heavily on guardians.

Anxiety About Future Paths: 76.2% of guardians feel "very anxious or somewhat anxious" about advancing to higher grades or schools.

Earnest Wishes for Educational Settings: "Correctly understanding OD as a 'physical illness' (19.0%)" was the most frequent request, expressing a desire for the penetration of a medical perspective rather than a "grit-based" approach.

Detailed Data

Q1: To what extent do/did your child's OD symptoms cause tardiness, early departures, or absences?

Several times a month: 30.5%

Fluctuates depending on the period: 26.7%

Several times a week: 19.0%

Little impact: 14.3%

Almost daily impact: 9.5%

→ From "several times a month" to "daily," nearly 90% of children are affected in some way in their school attendance. The high number of responses indicating "fluctuates depending on the period" also reveals the difficulty in maintaining school attendance due to the unpredictable nature of OD.

Q2: Does the school (homeroom teacher, school nurse, etc.) understand and support OD?

Understands and accommodates to some extent: 53.3%

Understands and accommodates very well: 17.1%

Cannot say either way: 15.2%

Not well understood: 7.6%

Not understood at all: 6.7%

→ A total of over 70% of guardians evaluate the school's support positively. While awareness of OD in educational settings is increasing, approximately 30% still feel it is "difficult to say" or "not understood," suggesting a disparity between schools and teachers.

Q3: What kind of accommodations or support have you received from the school so far?

Allowed to rest in the nurse's office: 18.8%

Received kind words: 16.4%

Flexible handling of tardiness and absences: 15.5%

Allowed afternoon or separate room attendance: 12.7%

Accommodations for assignment and test schedules/content: 10.3%

Other: 26.3% (Coordinated with school counselor: 7.5%, Creative attendance tracking: 7.0%, Online classes/printouts provided: 5.2%, etc.)

→ Many soft-skill accommodations that can be implemented in schools, such as resting in the nurse's office and kind words, were mentioned. On the other hand, accommodations directly related to learning delays, such as "test schedule considerations" and "online support," are still insufficient, highlighting the challenge of providing individually tailored learning support.

Q4: Have you encountered any difficulties or hardships in your interactions with the school?

Burden of reporting absences each time: 14.9%

Anxiety about the impact on attendance days/school records: 13.7%

Differences in teacher responses: 11.9%

No particular difficulties: 11.3%

Child became reluctant to go to school: 10.7%

Other: 37.5% (Did not know where to seek consultation: 10.7%, Perceived as "laziness" or "school refusal": 10.1%, Not understood as an illness: 8.3%, etc.)

→ The most common issue was the "burden of reporting absences" via phone calls on mornings when the child felt unwell. Furthermore, guardians expressed stress related to the school's administrative system and evaluation system, such as "differences in teacher responses" and "anxiety about school records."

Q5: Do/did you feel anxious about your child's attendance days, advancement to higher grades, or future schooling?

Somewhat anxious: 63.8%

Not very anxious: 15.2%

Very anxious: 12.4%

Not anxious at all: 5.7%

Unsure: 2.9%

→ Approximately 76% combined of "very anxious" and "somewhat anxious" indicates that the majority of guardians feel a sense of crisis about the future. Since OD symptoms tend to be long-term, the discrepancy between the current attendance-based evaluation system and the child's actual condition amplifies anxiety.

Q6: What do you most wish for from schools and educational institutions?

To correctly understand OD as a "physical illness": 19.0%

Not to penalize tardiness/absences based on attendance days: 14.6%

To allow flexible learning methods such as afternoon attendance and online options: 14.1%

To share information among teachers and unify responses: 12.2%

To be considerate of the child's feelings: 11.8%

Other: 28.3% (To spread correct knowledge about OD: 11.7%, To establish easily accessible consultation services: 11.2%, No particular wishes: 5.4%)

→ There is a strong desire for understanding that OD has "medical reasons, not just a lack of effort." Additionally, there are strong calls for flexibility in evaluation systems and diversification of learning methods, suggesting a need to reconsider the traditional school attendance style that assumes "attending class from the morning."

Summary of Survey Results

This survey revealed that while accommodations for OD in schools are expanding, parental anxiety remains extremely high. In particular, the operational burden of "daily absence reporting" and the systemic issues of "attendance days and future paths" contribute to the mental distress of guardians. OD is not a problem that can be solved by personal effort or willpower; it is a condition that requires appropriate treatment and "learning at a sustainable pace." Schools are urged to provide flexible options such as online learning, separate rooms, and afternoon attendance, along with consistent support based on medical evidence, rather than enforcing uniform school attendance.

Comment from the Japan Association for the Improvement of Orthostatic Dysregulation (OD)

For parents of children with Orthostatic Dysregulation (OD), interactions with schools can sometimes be a greater source of stress than caring for them at home. The fact that "daily absence reporting" topped the list of burdens in this survey is a crucial point that schools should reconsider. In situations where poor health is predictable, flexible operations such as switching to weekly or monthly reporting are necessary.

Furthermore, the most serious concern is anxiety about school records and future paths. Children with OD are in a struggle of "wanting to go but being unable to." We earnestly hope that educational institutions will correctly recognize their symptoms as a "physical illness" and build a supportive system that does not judge a child's value or future solely based on their attendance, but offers warm support.

Survey Overview

Survey Organizer: Japan Association for the Improvement of Orthostatic Dysregulation (OD)

Survey Period: June 10, 2026 - June 21, 2026

Target Audience: Guardians nationwide living with children diagnosed with Orthostatic Dysregulation in elementary, junior high, and high school.

Survey Method: Internet-based questionnaire survey

Number of Valid Responses: 105