The aim of this study was to investigate the consequences experienced by SO of adult HF-ASD patients and to compare these with the consequences experienced by SO of patients with depression or schizophrenia. The main outcome of this study is that the overall consequences experienced by the SO of adult HF-ASD patients are comparable to those of patients with depression or schizophrenia. On Tension
they even score significantly higher than SO in the other two samples. This is an important result, because HF-ASD in adults is often not recognized or diagnosed, and support and treatment for ASD patients and their SO have never been a major focus of attention in mental health. Also, HF-ASD is sometimes regarded as a milder form of ASD (Baron-Cohen 2000
). Nonetheless, the consequences, especially for relationships, can be substantial. This is consistent with our findings in the GHQ-12 data, which show that primary caregivers of HF-ASD patients experience profound emotional distress, and are beyond average at risk of developing mental health problems themselves. These patients and their SO have been feeling isolated, neglected and poorly understood, and have therefore not been receiving the support they needed.
Specifics of ASD as Hypothetic Explanations for the Consequences Found
Because of the high levels of heritability of autistic traits (Muhle et al. 2004
; Hoekstra et al. 2007
), SO of ASD patients have a higher risk of having another family member affected by ASD than the general population (van Steijn et al. 2012
). This is recognized as an additional cause of stress in mothers with multiple children with ASD (Orsmond et al. 2007
; Ekas et al. 2009
). This may also be the case for spouses who, besides having a partner with ASD, have one or more children with ASD or another disability (van Steijn et al. 2014
; Lau and Peterson 2011
Parents of adults with HF-ASD reported high levels of worrying. It is known from research concerning parents of young children that parenting a child with ASD can cause high levels of parenting stress and is correlated with depression in mothers, but it was believed that this stress diminished as the child grew older (Lounds et al. 2007
; Ekas and Whitman 2010
; Hartley et al. 2011
). Our findings show that parents continue to worry profoundly about their children with ASD, even when they have reached adulthood. This is consistent with the research by Cadman et al. (2012
) who found that caregivers of adolescents and young adults with ASD had very high levels of burden, a level that was comparable to caregivers of persons with an acquired brain injury.
Spouses of HF-ASD patients experience more tension in their relationship with the patient compared to parents. When a partner becomes a patient, more role-taking confusion occurs than when the patient is a child. Spouses sometimes talk about their mentally ill partner in terms of “having another child” (Wittmund et al. 2002
). This is confirmed by Ostman et al. (2005
) and Cuijpers and Stam (2000
) who also found that spouses showed increased burden compared to parents and others.
Based on our clinical experience, the lack of mutual reciprocal interaction, one of the main disabilities in patients with HF-ASD, is probably a major additional factor contributing to the perceived burden of the spouses. Due to the ability to ‘feel’ and understand the other person’s feelings and needs, and responding accordingly, reciprocal interaction is valued by many as essential for a fulfilling intimate relationship. This requires a certain amount of ‘theory of mind’, often lacking in patients with ASD (Baron-Cohen 1991
We believe parents are less burdened by this, because of the difference in expectations that a parent has of a child compared to the expectations one has of a spouse or partner (van Tongerloo et al. 2015
Another explanation for the higher levels of tension reported by spouses of HF-ASD patients is that of gender: Wittmund et al. (2002
) found that female spouses of psychiatric patients were at a higher risk of getting depressed themselves than male spouses. In the ASD-sample, 85% of the spouses was female (50 women vs. 9 men), which reflects the gender distribution of ASD (Loomes et al. 2017
). Other research is inconclusive in regard to the question whether gender is associated with the amount of caregiver distress (Sharma et al. 2016
; Baronet 1999
Assortive mating (non-random partner choice) might influence the relationship between an HF-ASD patient and spouse. Baron-Cohen (2006
) suggested that assortive mating between two high systemizers (people with a high preference to lawfulness, predictability and categorizing information) would lead to more autistic children, but Hoekstra et al. (2007
) found no evidence for assortive mating with respect to mutual autistic traits. It is unclear to what extent assortive mating might influence the consequences experienced by a spouse of an HF-ASD patient. One could suggest that spouses who have several autistic traits themselves (broad phenotype) would be less bothered or burdened by the social handicaps of their autistic partners. On the other hand, when someone is feeling overwhelmed by an outside world that they do not completely understand themselves, the strain of caring for someone with the same problems could be experienced as burdensome.
Contrary to the assortive mating theory, HF-ASD subjects might also be attractive to empathic, supporting partners who feel an urge to care for them, and compensate for their limitations, or to partners who have been emotionally neglected in their youths and tend to choose a partner who repeats this emotional neglecting. However, receiving no emotional reciprocity in return might drain and strain them in the long run.
Literature is inconsistent on whether ASD symptom severity contributes to levels of consequences (Ricard et al. 1999
; Tint and Weiss 2016
). Mothers often report higher levels of consequences when children with ASD show more disruptive behavior or higher ASD symptom severity (Ekas and Whitman 2010
; Tomeny 2016
). Also, Renty and Roeyers (2007
) found that spouses of men with ASD reported higher levels of marital satisfaction when their husbands showed less autism-specific traits as measured with the AQ. In our sample, the level of ASD symptoms recognized by the SO was not correlated to the level of consequences they experienced. Reliability of the AQ domains in our sample was comparable to that of Hoekstra et al. (2008
To our knowledge this is the first time that the caregiver consequences for those involved with an adult with HF-ASD have been examined using the IEQ. Even though most patients in our clinic had not been diagnosed with ASD during childhood, the impact of their limitations on their surroundings was substantial.
Because of the consequences experienced by spouses of patients with HF-ASD, as found in this study and voiced in the psycho-education group meetings, we believe that extra attention is needed for this group. They experience a lot of interpersonal strain in their relationships and are at risk of developing mental health problems themselves.
Limitations of This Study
The IEQ has been validated in schizophrenia and depression samples, and has been used with many different psychiatric disorders since, but it has not officially been validated yet with respect to ASD. Cronbach’s alpha was acceptable for the overall score and for 3 of the 4 sub-scales but not for the subscale Supervision. Items in this subscale, like “how often during the past 4 weeks have you guarded your relative/friend from committing dangerous acts” or “have you guarded your relative/friend from taking illegal drugs” are possibly not as applicable to HF-ASD as they are to depression or schizophrenia. These were also items that could not be included in one of the factors of the preliminary exploratory factor analysis, which showed a slightly different factor structure compared to the standard IEQ structure. Tension seems to be an issue in ASD, which confirms the results described in this article.
Even though a Confirmatory Factor Analysis was not performed due to the small sample size, it is encouraging to see that the IEQ in ASD seems to have a reasonable amount of reliability and validity. A larger sample size is needed for official validation for the IEQ in ASD. Also, more studies need to be carried out to replicate our findings.
Another limitation concerns the different backgrounds and characteristics of the samples, which reflect the different context in which the caregiving takes place, and also reflects the age and gender difference between the disorders. The ASD data were collected from SO who joined a psycho-educational ASD course in a specialized outpatient clinic. Not all patients diagnosed with ASD participated in this group, and because of the different reasons for not participating we cannot say for sure in which direction a selection bias has influenced our results. However, all data were from SO who were in close contact with a patient, and experienced consequences more or less on a daily basis.
ASD patients were diagnosed between 2006 and 2009, the DSM IV-TR (American Psychiatric Association 1994
) version was used for classification. As the DSM-IV sub-classifications are no longer applicable in DSM 5 (American Psychiatric Association 2013
), we have only reported the frequencies of these sub-classifications and have not included them in further analyses.
Recent studies (Buck et al. 2014
; Cawthorpe 2017
; De-la-Iglesia and Olivar 2015
; Hofvander et al. 2009
; Orinstein et al. 2015
; Cadman et al. 2012
) suggest that co-morbid psychiatric conditions (e.g. depression) make life more difficult especially for adults with HF-ASD. This would probably also be of impact on the SO and of influence on the consequences they experience. Unfortunately, no data concerning co-morbid psychiatric disorders are available for the HF-ASD sample, nor for the depression and schizophrenia sample.