Comparison of Adults with Autism Spectrum Disorder with and without a Guardian

Background:  Guardianship is a legal intervention used to protect adults unable to care for their health, safety, or provide self-care by providing them with a surrogate decision-maker who has the same rights and responsibilities over the protected adult that a parent has over their minor child.  Legal scholars posit guardianship may not be appropriate for adults with Autism Spectrum Disorders (ASD), especially those considered high functioning. 

Objectives: One previous small study examining characteristics of adults with ASD under guardianship found adults with ASD were more likely to be male and were younger than other protected adults under guardianship. We undertook a larger, more detailed comparison of adults with ASD with and without guardianship. We hypothesized that participants with a guardianship would have more severe clinical symptoms, lower IQ, and more co-morbid psychiatric and medical conditions than those without a guardian. We expected participants with a guardian to be more likely to receive a variety of social services

Methods:   We studied 144 individuals ascertained 1982-1986 who met criteria for ASD (DSM-III or DSM–IV).  Questionnaires and psychometric testing were completed in personal follow-up visits.  Data were analyzed using analysis of variance and logistic regression. 

Results:   Ninety-two percent of guardians were the parent of the adult with ASD, 5% were a guardians ad litem, 1.3% were another relative, and 1.3% were unknown. Gender differences were not significant (p=0.27). Adults with ASD under guardianship had significantly higher scores on the Autism Diagnostic Scale (p<0.0001), significantly lower Adaptive Behavior Scale total and subscale scores, (p<0.0001) were significantly more likely to destroy things in anger (p=0.028), and had significantly lower IQ scores (p<0.0001). Participants without a guardian were significantly more likely to receive vocational rehabilitation (p=0.004) and less like to obtain Social Security (p<0.0001), Medicaid (p>0.0001), and assistance from the Division of Services for Persons with Disabilities (p<0.0001). Contrary to expectations, the two groups did not differ regarding co-morbid psychiatric and overall number of medical disorders. However, more individuals with guardianship had seizure disorders (p=0.001). 

Conclusions:  

Adults with ASD with guardianship in our sample had significantly more severe autism symptoms and lower IQ scores than those without guardians. However, they did not differ in the number of comorbid medical and psychiatric conditions, suggesting that in aggregate, co-occurring conditions, not including intellectual disabilities, do not play a strong role in obtaining guardianship. Seizure disorders were significantly more common among those with guardianship, suggesting that type/severity of co-morbidity may yet be important. We confirmed our hypotheses regarding service use. While we found no overall gender differences between the two groups, this may have been due to the low number of female participants; further explorations of gender interactions are presented. We note that because the sample was originally ascertained in the 1980’s, adults with high functioning ASD are not part of this cohort, so our conclusions are limited to a subset of more severe ASD.  In spite of this limitation, our study is the first study to investigate multiple characteristics of adults with ASD with and without guardianship.