Parenting with an Autism Spectrum Disorder

NCT06502054 | Recruiting

• 1 other identifier: LPEK-0765
• Study Type: observational
• Target: 184
• Locations: 1 country
• Sites: 1

Brief Summary

In many individuals, Autism Spectrum Disorder (ASD) is recognized and diagnosed late in adolescence or even in adulthood, despite the presence of long-standing impairments and distress. One area that has received little attention so far is research and interventions in clinical practice that relate to the experienced realities of parenthood for autistic adults or offer support in this context. The few existing research findings in this field suggest that parents with ASD might face specific challenges. At the same time, there is a lack of empirical research on the experiences autistic adults have with parenthood, whether they perceive a need for specific support services, and, if so, what those services should look like. To fill this research gap, this study aims to examine the mental health, needs, and strengths of parents with ASD. Particular focus will be given to parental stress and difficulties in the areas of mentalization and emotion regulation, which can increase the risk of psychological comorbidities. Using a mixed-methods approach, the study will investigate to what extent an already established parenting program or an adaptation thereof might be suitable to address the specific requirements of autistic parents and enhance their parenting skills.

Conditions

Autism Spectrum Disorder

Keywords

Parenthood; Autism Spectrum Disorder; Preschool children

Outcome Measures

Primary Outcomes (1)

• Mentalization

  The Mentalization Scale (MentS) is a 28-item instrument for measuring mentalization in three aspects: self-related, other-related, and motivation to mentalize. The total score for the MentS ranges from 28 to 140, with higher scores indicating a higher overall ability to mentalize. Higher scores in the subscales and total score indicate a higher ability to mentalize.

  Baseline assessment

Secondary Outcomes (4)

• Autistic Traits

  Baseline assessment

• Parental Quality of Life

  Baseline assessment

• Parental mental health

  Baseline assessment

• Children mental health

  Baseline assessment

Other Outcomes (5)

• Emotion regulation

  Baseline assessment

• Parental stress

  Baseline assessment

• Self-efficacy in parenting

  Baseline assessment

Study Arms (2)

Autistic parents

Parents who fulfill the main diagnosis of ASD, which includes atypical autism (ICD-10: F84.1) and Asperger syndrome (ICD-10: F84.5), who are ≥ 18 years old and have a child aged 0 to 6 years are included.

Non-autistic parents

Parents are included who do not have a lifetime main diagnosis of a psychiatric illness (ICD-10-GM-2016: F10 - F69), who are ≥ 18 years old and have a child aged 0 to 6 years.

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Parents who fulfill the main diagnosis of ASD, who are ≥ 18 years old and have a child aged 0 to 6 years.

You may not qualify if:

• Parents who fulfill the main diagnosis of ASD, including atypical autism (ICD-10: F84.1) and Asperger syndrome (ICD-10: F84.5)
• Age ≥ 18 years
• Have a child aged 0 to 6 years
• Below-average general cognitive ability (according to clinical impression)
• Lack of German language skills
• Severe visual or hearing impairment (uncorrected)
• Serious neurological and psychiatric illnesses (e.g., epilepsy, psychoses)
• Acute suicidal tendencies (according to clinical findings)
• Eligibility Criteria for the Control Group
• Parents without a lifetime main diagnosis of a psychiatric illness (ICD-10-GM-2016: F10 - F69)
• Age ≥ 18 years
• Have a child aged 0 to 6 years
• Matched to the study group in terms of age and gender
• Above-mentioned psychiatric diagnoses
• Below-average general cognitive ability

Sponsors & Collaborators

• Universitätsklinikum Hamburg-Eppendorf: lead

Study Sites (1)

University Medical Center Hamburg-Eppendorf

Hamburg, Hamburg, 20251, Germany

RECRUITING

MeSH Terms

Conditions

Autism Spectrum Disorder

Condition Hierarchy (Ancestors)

Child Development Disorders, Pervasive; Neurodevelopmental Disorders; Mental Disorders

Central Study Contacts

Johannes Boettcher, Dr.

CONTACT

+49 152 22832379; j.boettcher@uke.de

Holger Zapf, Dr.

CONTACT

h.zapf@uke.de

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: CROSS SECTIONAL
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Principal Investigator

Study Record Dates

• First Submitted: July 5, 2024
• First Posted: July 15, 2024
• Study Start: September 1, 2024
• Primary Completion: September 1, 2025
• Study Completion: October 1, 2025
• Last Updated: March 11, 2025

Record last verified: 2025-03

Data Sharing

• IPD Sharing: Will not share

Locations

DE (1)