Maternal Health of Transition Age Individuals with ASD

Background:  

Previous studies have focused primarily on the well-being of mothers of young, school-aged children; however, little is known about the well-being of mothers of teens/young adults with ASD, despite the recognized challenges of the transitional period.

Objectives:  

To determine health outcomes, including contributing factors, in mothers of teens/young adults with ASD

Methods:  

Maternal participants in the Interactive Autism Network (IAN) with at least one teen/young adult aged 15-29 were recruited to complete a questionnaire that incorporated the PROMIS Global Short Form, the Perceived Stress Scale (PSS), and the Waisman Activities of Daily Living Scale (W-ADL). Additional demographic questions were asked of the mother and general health-related questions for the child.

Results:

488 mothers completed responses for the PROMIS Global Short Form and the Perceived Stress Scale for themselves, and the W-ADL for their teen/young adult.

 Primary factors associated with decreased health for mothers of teens/young adults with ASD are increased stress (strongly influenced by household income and the teen/young adult’s general health), the presence of another child/young adult with ASD/other disability in the home, and the male gender of the affected child with ASD. See Path Analysis below (χ²(54) = 173.13; p<.001) and Figure 1.

Comparison to norms:

 * Z-test for means compared mothers’ mean score (M=48.51, SD=8.16) to the normed mean value of the Global Physical Health (PROMIS) Score (µ=50; σ=10); the result was statistically significant (z=-3.29, p<.001, two-tailed).

 * Z-test for means compared mothers’ mean score (M=45.88, SD=9.50) to the normed mean value of the Global Mental Health (PROMIS) Score (µ=50; σ=10); the result was statistically significant (z=-9.10, p<.001, two-tailed).

 * Z-test for means comparing the mothers’ mean score (M=17.34, SD=7.28) to the normed mean value of the PSS for females (µ=13.7; σ=6.6); the result was statistically significant (z=12.18, p<.001, two-tailed).

 Path Analysis:

 * Greater maternal perceived stress (PSS) + presence of another teen/young adult (15-29 years) in the home with ASD/disability were associated with lower Global Physical Heath (T Score), R² =.33, F(2,482)=116.51, p<.001.

* Greater maternal perceived stress + presence of another teen/young adult (15-29 years) in the home with ASD/disability  + male gender of the ASD teen/young adult were associated with lower  Global Mental Health (T Score), R²=.56, F(3,479)=199.47, p<.001.

* Lower Household Income + poorer General Health of the teen/young adult were associated with increased perceived stress , R²=.11, F(2,477)=28.99, p<.001.

* Mother being part of a couple (married/unmarried), white, having at least a two-year college degree, and being employed were all associated with higher Household Income, R²=.37, F(4,466)=69.26, p<.001.

* Greater independence on the W-ADL is associated with better General Health in the teen/young adult, R²=.11, F(1,486)=57.07, p<.001.

* Greater severity of ASD in the teen/young adult, the presence of intellectual disability, and poorer verbal skills were all negatively associated with independence as measured by the W-ADL, R²=.50, F(3,465)=153.53, p<.001.

Conclusions:  

This combination of child, maternal and social factors is similar to that reported for mothers of younger children with ASD. Family-centered ASD programs are needed to effectively address this complex set of issues.