This multi-center, cross-sectional study aimed to evaluate functional outcomes among adults with ASD, parental depressive symptoms and burnout levels. Majority of adults with ASD in our sample had “poor” or “very poor” outcome according to Howlin et al (2004) criteria while only 5.4% were classified as having “good” or “very good” outcome38. Duration of special education was the only significant predictor of favourable outcome while offspring of fathers with higher levels of education also tended to fare better. Mothers were significantly more depressed compared to fathers. More than one fifth of mothers and one tenth of fathers reported significant levels of depression. Significant maternal depression was associated with greater severity of ASD symptoms, lack of spare time, and paternal depression. Clinically significant depression symptoms among fathers were associated with lack of formal education for their children, a history of hospitalization among children and maternal depression. Mothers especially those with offspring who also had IDs reported elevated levels burnout compared to fathers.
Initially described disorders of infancy and often conceptualized as childhood disorders, ASD are now known to be life-long conditions 38,39,18. Children, who were diagnosed with autism in the late 1990s and early 2000, began to be adults. This transition is challenging not only for individuals with ASD but also for their parents 8,40−42. The majority of available studies on adults with ASD and their parents were conducted among western samples and no study up to now evaluated functioning of adults with ASD and depression and burnout levels of their parents in Turkey.
Caring for individuals with ASD from the time of diagnosis onward is a demanding process and parents must balance parenting roles within their marriage. They also act as co-therapists emphasizing positive behavior, while educating relatives, schools, and teachers on the nature of ASD, advocate for their children’s rights and with the transition to adulthood must address problems such as guardianship, higher education, social/ romantic relationships of their children, financial security, independent living and housing 10. These lead them to experience elevated levels of stress and burnout.
Mothers of children with ASD are the primary caregivers experiencing elevated stress and this may contribute to the development of maternal psychopathology 36,43. Most of the past studies supported that mothers of children with ASD experience elevated burden and depression in comparison to fathers 44. Previous studies from Turkey have shown that both parents of children with disabilities experiences elevated stress, depression and burnout, but this was greater in mothers compared to fathers 36,45. In a study conducted among parents of Turkish adults with IDs, Gormez 24 reported that elevated caregiving burden was associated with comorbid ASD, behavioral problems and caregivers’ higher education levels. Supporting those views self-reported depression and burnout levels in our study were also significantly elevated in mothers compared to fathers although we could not find an effect of parental education. This difference may be due to heterogenous nature of patients in the Gormez study 24, use of differing instruments (e.g. Zarit Caregiving Burden Interview vs. MBI) or sampling methods. Effects of parental education on burnout and depression may be evaluated with further studies.
Previous studies suggested that mothers with lower education, with male and/ or older children with ASD, and with children having behavior problems as well as psychiatric comorbidity, physical disorders and social impairments may be more depressed and anxious 14,16−19. The presence of functional speech in children, higher paternal/ maternal education levels, access to specialized schooling for children, greater family income, lack of comorbidities among children, and using medications to manage ASD symptoms may also reduce parenting stress 30,32, 46–48. Depression and anxiety in one parent, especially for mothers may spill-over to other family members 49. Previous reports suggest that the rate of clinically significant depression in parents raising children with ASD ranged from 12.5 - 34.2% 50–54. A recent meta-analysis reported the depression rate in parents of children with ASD as 31.0% 53. Supporting those views, we found that more than one fifth of mothers and one tenth of fathers in our sample reported significant levels of depression. Significant depression in mothers was related to incontinence in children, lack of spare time, and depression in their husbands. Mothers of adults with ASD and comorbid IDs also tended to report increased depression. Clinically significant depression symptoms in fathers were related to lack of formal education for their children, a history of hospitalization among children, and significant depression symptoms among mothers. Mothers described increased emotional fatigue and total burnout compared to fathers. Presence of IDs and epilepsy in adult offspring with ASD also increased maternal burnout while there was a signal that paternal burnout may also be affected by presence of IDs. Those results support and extend the results of previous studies and may suggest that parenting stress, burnout and depression may continue over long term for parents of children with ASD. Depression in parent dyads may also spillover from mothers to fathers or vice versa 32. Further studies on Turkish samples with ASD and their parents as they age may be required to evaluate the temporal changes in those constructs.
ASD is also associated with elevated rates of comorbid physical disorders, psychopathology as well as early mortality 55–57. Lifetime rates for comorbid psychopathology among adults with ASD may vary between 69.0 - 79.0% 16,56. Most common psychiatric/ neurodevelopmental comorbidities found in previous studies were anxiety disorders (40.0 – 84.0%), MDD (31.0 – 77.0%), oppositional defiant disorder (ODD, 53.0%), and ADHD (42.0 – 68.0%). A systematic review found that 61.5% of adults with ASD were treated with psychotropic medications. Most commonly used medications were atypical anti-psychotics followed by stimulant/nonstimulant ADHD medicine and antidepressants 58. In another study, 64.1% of adults were prescribed at least one psychotropic medication, 46.4% took two or more psychotropic medications. Furthermore, twenty-two percent of these polypharmacy samples were not being followed by a psychiatrist 59. Similar to those studies, more than half of adults with ASD in our sample also had a comorbid psychopathology. The majority were given psychopharmacological treatment, mostly with antipsychotics. However, differing from those studies most of the patients in our sample had comorbid ADHD and rates of mood and anxiety disorders were lower. This discrepancy may reflect the fact that they were being followed by psychiatrists who tend to evaluate symptoms with unstructured clinical interviews rather than using specific instruments (e.g., PAS-ADD Checklist). In addition, the parents reported that their psychiatrists, most of whom lacked expertise in neurodevelopmental disorders consulted with the parents rather than observing the behavioral changes among their offspring with ASD, especially those without functional speech. The diagnoses of clinicians may also be affected by diagnostic overshadowing 60. Further studies using structured interviews modified for ASD may be required to evaluate comorbid diagnoses among Turkish adults with ASD. Also, almost one-third of our patients was mutistic and with a similar rate of comorbid MR/ID that may limit their ability to express and desribe inner experience. On the other hand, several symptoms of ASD may mimic those of depression 61,62 and autism is linked to alexithymia, which may affect presentation of depression 38,63−66. The rate of ADHD detected in our adult cohort was comparable to the rate in children with ASD. This may reflect homotypic temporal continuity of ADHD comorbidity as other studies have previously mentioned 67–72.
ASD among adults may be associated with medical complications and those may be found among 25 – 50 percent of patients 73,74. Research is relatively new in this field; however, studies indicate an increased risk for multiple conditions such as problems in vision/ hearing, diabetes, cardiovascular disorders, obesity, tyroid diseases, sleep problems and gastrointestinal disorders 65,75−81. Lifetime rates for epilepsy among patients with ASD vary between 2.7–40.0% 82–87. Supporting to these results, in our sample, eighty-four participants were found to have chronic organic diseases requiring treatment. The most common of these diseases were epilepsy, obesity, and autoimmune thyroiditis. These results demonstrate that there is a need to develop improved treatment options and quality of care in this population 41,77.
After high school, enrollment in tertiary education or finding employment are the most common steps. Those steps into adulthood can be challenging for those with ASD 88,89. Previous studies reported limited access to tertiary education (28.0%)88 and frequent problems in adapting to environment in those with access to tertiary education 90. In Canada, Eaves and Ho 78 analyzed adults with ASD and reported that 45.0% had never been employed. In an older study from the US 91 only 27.0% of adults with ASD displayed some level of work/employment. In another study with adults in Australia, it was found that only a minority were engaged in paid employment 92. Our results are consistent with those studies. The majority of our sample were still receiving special education at the time when they took part in the study, less than half completed high school and less than two percent could complete tertiary education. Additionally, less than one- tenth of Turkish adults with ASD in our sample could work at a job for at least a month. Our results underline the importance of life-long educational and vocational supports for adults with ASD. Further studies should evaluate predictors of gainful employment among this sample. Counseling services, vocational training and supports and coordination of services across schools, families, and potential employers for young adults and adults with ASD should be established as soon as possible in developing countries, including Turkey 93–96.
An additional indicator of successful functioning in adulthood is independent living which includes separation from the family of origin and becoming socially active in the community. However, studies show that the most adults with ASD continue to live with their parents and never leave home 8,73,78,92,97−103. Consistent with previous studies, five adults in our sample resided in nursing homes and the majority lived with their families. Transportation is another major problem for adults with ASD. Mobility provides a certain level of independence for young people to travel, access to health care, and attend group activities 104,105. Those factors have been linked to enhanced quality of life and mental well-being 106–108; unfortunately, many adults with ASD continue to depend on family members for transportation. The situation may be improving in some countries and in a prior survey from the US, the majority of parents of adolescents with ASD without intellectual disability reported that their children were currently driving (29.0%) or planning to drive (34.0%) 109. Contrasting those results, approximately one percent of our sample could obtain their driver’s licence and less than one-tenth could travel between cities by using bus/ plane. This discrepancy may reflect the need to address transportation needs of Turkish adults with ASD. Driving instructors and courses may be informed of neurodevelopmental disorders including ASD and appropriate modifications to the licensing process may be required. Staff working at intercity bus/ train/ airplane services may also be educated on the needs of adults with ASD as well as the importance of sensory problems in adapting to travel.
Social relations including friendships protect mental health among people, including adults with ASD. However, adults with autism experience significant difficulties in establishing and maintaining friendships and romantic relationships due to their symptoms 110,111. Previous studies found that only a small number of adults with ASD could form enduring friendships (romantic/ platonic) 38,97,99,112−116. Our results are in accordance with those previous reports and we found that parents of just over one-tenth our sample reported their children as having friends and less than five percent experienced romantic relationships.
Previous studies reported that 50.0 to 60.0% of adults with ASD may be classified as “poor” or “very poor” functioning, while rates of “good” and “very good” functioning are more variable (i.e. 3.0- 48.0%; 18,38,39,103,117). Rates of favorable outcome may change according to criteria used to define functioning, sampling methods, study centers, enrollment of participants with IDs and presence of social supports. Favorable outcome in those studies was associated with greater IQ levels, early functional language, social reciprocity, better initial functioning and lower levels of ASD symptoms 18,38,39,103,117. The rate of “good”/ “very good” outcome in our sample was at the lower end of the ranges those previously reported. And differing from those studies, we found that the only predictor of favorable outcome in our sample was the duration of special education received. We could not evaluate the effects of IQ, adaptive functioning at baseline and severity of ASD symptoms due to lack of information in participants’ records. Further studies may evaluate these variables on the functionality of adults with ASD in Turkey.
Limitations
Our study is not without limitations. First, most of the participants could not be contacted/ enrolled in the study, and their medical records were incomplete preventing us from evaluating the effects of baseline IQ, adaptive functioning, ASD symptom severity and effects of specific symptoms. Parents of more impaired adults may refuse participation outright, withdraw their consent or may have moved to other addresses introducing selection bias to our results. Second, we did not evaluate adults with ASD with clinical interviews and depended on the reports of psychiatrists following them for comorbid diagnoses. Further studies may evaluate adults with ASD via specialized instruments (e.g. PAS- ADD etc.). Third, we evaluated depression and caregiving burden among parents with self-reports and there is a possibility of recall and bias in reporting as well as shared method variance. Structured interviews and scales (e.g. Zarit Caregiving Burden Interview, Hamilton Depression Rating Scale etc.) may provide greater objectivity in evaluating those constructs. Fourth, we depended on parents’ own reports for their psychopathologies and medical disorders requiring treatment and those reports may also be subject to bias. Last, rather than using discrete questions tapping social participation, we could have used a psychometric scale to evaluate social competence among adults with ASD (e.g. McConkey and Walsh 118). Nevertheless, our study is the first one to evaluate functioning among a large sample of adults with ASD from Turkey along with depression and burnout levels among their parents. Our data may contribute to the literature on adult outcome of ASD as most of the available data are from Western countries.