Immaterial needs
Exploring the case of parental autism from an adult child's perspective
Esther Pars-van Weeterloo
Student number: 10344578
Program: Research Master Social Sciences. Supervisor: Prof. Dr. Ria Reis Second reader: Dr. Kristine Krause Submitted: July 1, 2014 (Amsterdam)
Immaterial needs
Exploring the case of parental autism from an adult child's perspective
In Dutch public discourses as well as in parenting literature, the importance of responsive parenting is repeatedly stressed. As a result of their condition, parents with autism may have difficulty displaying this responsiveness. By conducting and analyzing 30 semi-structured interviews I have explored the experiences and perceptions of Dutch adults who claim to have been raised by (a) parent(s) with autism. I aimed to uncover how they perceived the consequences of parental autism and which resources and strategies they employed to compensate for possible negative effects. Results indicate that the lack of responsiveness in parents with autism was perceived to negatively affect families and the individuals therein, and that these effects persisted after childhood. Extrafamilial microcontexts and processes of semantic contagion appeared to be crucial resources that allowed my informants to enhance their well-being. Full compensation, however, was never attained.
KEY WORDS: autism, mindblindness, responsive parenting, semantic contagion, social resilience
In the Netherlands, the idea of responsive parenting has become increasingly embedded in dominant public discourses on parenting. Whereas prior to the 1970’s parenting practices were often geared towards the ideal of instilling discipline in children, from the 1970’s onwards parents increasingly embraced the ideal of a reciprocal, emotional relationship between parent and child in which rules were negotiated instead of imposed (Doornenbal, 1998; Wubs, 2000, 2004). In the scientific literature we can also see how the concept of responsive parenting has acquired a more prominent position over the past decades (e.g. Bowlby, 1989; Dix, 1992; Eshel, Daelmans, Cabral de Mello & Martines, 2011; Grusec, 2011; Landry, Smith & Swank, 2006; Massoff, 2007). Within developmental psychology parental responsiveness, which is defined here as 'the ability to accurately perceive and promptly respond' to the child's signals (Eshel, Daelmans, Cabral de Mello & Martines, 2006, p. 992), is associated with many favorable developmental outcomes in children, like social competence, secure attachment, and successful cognitive development. The opposite
situation, unresponsive parenting, is associated with dysfunctional families in which children are at risk for cognitive and behavioral problems (Dix, 1992). Nevertheless, this does not mean that children growing up in families with unresponsive parents will inevitably suffer severe consequences. Studies of (social) resilience indicate that children raised under less than optimal circumstances can still be able to flourish (e.g. Obrist, Pfeiffer & Henley, 2010; Ungar, 2011). This, however, involves a complex process of navigating towards and negotiating for resources that sustain the individual's well-being (Ungar, 2011).
In the current paper I focus on the experiences and perceptions of (now adult) children that have been raised by at least one parent that as a result of his or her (suspected) condition, autism, was largely unable to conform to the ideal of responsive parenting. If and how autism, a condition that is (among other things) characterized by impaired empathic abilities (Baron-Cohen, Tager-Flusberg & (Baron-Cohen, 1993; Lombardo & Baron-(Baron-Cohen, 2011; Senju, 2012; Travis & Sigman, 1998) affects these children, has hardly received any scholarly attention. By examining their stories, I intend to explore how the children under study think parental autism affected them and their family, and how (if needed) they were able to employ compensatory resources that enhanced their well-being. Guiding questions for this research were 1) how do Dutch adult non-autistic children of (a) parent(s) with autism describe their childhood and relationship with their parents, 2) how do they understand and perceive the autism of their parent and how do they think it affected them and the way in which they were parented, 3) what resources and strategies to compensate for the (possible) consequences of their parents' deficits do the children describe in their narratives?
By answering these questions, I intend to fill (part of) the existing gap in knowledge regarding parental autism, and contribute to the literature on social resilience, as well as parenting studies. On a more practical level, this research can offer some insights in the particular challenges that children of parents with autism face, which may inspire future development of adequate counseling and intervention methods.
THEORY
The complex case of autism
Autism spectrum disorder (hereafter: autism) is characterized by two core deficits: restricted, repetitive behavior and communicative difficulties. These deficits can manifest themselves in different degrees of severity (Volkmar & McPartland, 2014). As history has shown, however, autism’s diagnostic criteria are far from fixed. When autism was first mentioned in 1943, it was described as a very rare and severe condition and classified as a psychosis (Chamak, 2008). Since the 1990’s autism prevalence has risen dramatically, transforming it ‘from a curious but obscure psychiatric condition to a widely known public health concern receiving much attention in the popular media’ (Bagatell, 2010, p. 33). Even though some state that this is the result of a true autism epidemic, it is more likely a consequence of increased awareness in parents and professionals, combined with a constant widening of diagnostic criteria (Eyal, 2013; Hacking, 2009; Liu, King & Bearman, 2010; Silverman, 2008; Wing & Potter, 2002). To make matters more complex, several studies have pointed out the possible existence of a broader autism phenotype, which refers to the existence of milder autistic traits in genetic relatives of individuals with autism (e.g. Ghaziuddin, 2005; Piven, Palmer, Jacobi, Childress & Arndt, 1997; Ruta, Mazzone, Mazzone, Wheelwright & Baron Cohen, 2012). As such, autism is a highly heterogeneous diagnostic category with fuzzy, constantly changing boundaries and being autistic or non-autistic becomes a case of displaying certain characteristics above or below an artificially constructed variable threshold. For some this artificiality combined with the fact that researchers are still struggling to find a common cause or underlying biological marker for autism, is reason to discard autism (like many disorders) as ‘an exemplary case of making up people’ in which a set of unusual characteristics came to be defined as a disorder (Silverman, 2008, p. 326). Members of the neurodiversity movement consider this medicalization of unusual characteristics unjustified and oppose the dominant medical discourse that frames autism as a severe condition that requires treatment. Advocates of this movement stress that autism is not a severe disease, but ‘just’ a natural variation among humans, like homosexuality, that needs acceptance rather than a cure (Chamak, 2008; Jaarsma & Welin, 2012; Perry, 2012). They align themselves with proponents of a social model of disability, which disconnects disability and impairment and considers the experience of being disabled to originate from society rather than the individual (Thomas, 2004). Adopting this take on autism, however, is increasingly criticized for being
too reductionist (Scullion, 2010), because even though many factors may have contributed to the emergence and increased prevalence of autism, ‘this does not make the malady any less real’ (Hacking, 1995a, p. 358). Simply dismissing autism as a social construction or natural variation ‘does not cure difficulties with social relationships, social communication, rigidity and sensory issues’ and ignores the difficulties that individuals ‘on the spectrum’ and their social surroundings experience (Jaarsma & Welin, 2012, p. 27).
The fuzziness, shape-shifts and controversies surrounding autism as a category, inevitably raise questions for the current research. How, for example, can one speak of an autistic parent and a non-autistic child when these concepts represent a simplified, artificial and medicalized approach to reality? In the current research, questions like these are intentionally left unanswered because I do not aim to formulate an all-encompassing definition of (non-)autism or take sides in the raging debates surrounding its definition and demarcation. Instead, I will focus on the perceptions of those I study, and how they define and utilize the concepts of autism and non-autism. However, in concentrating on how these individuals define (non-)autism and how they perceive its impact on their lives, we have to be aware of what Hacking (1995b) calls semantic contagion. This concept refers to the use of present terms to (re-) describe and understand past behaviors (see also: Owen, McRae, Adams & Vitale, 2009). Applying the autism label to a parent retrospectively, will inevitable lead to changes in how individuals describe and understand the behavior of this parent in terms of (non-)autism, because this newly available label allows them to 'reinterpret' their parent, themselves and their past in ways they did not have at their disposal before (Hacking, 1995b). Within religious conversion studies, a research area that often deals with sudden changes in reference frameworks, the 'active' processes resulting from this are referred to as biographical reconstruction; the practice of altering one's life story in such a way that it fits with newly acquired insights (Snow & Machalek, 1983). For the current research, a challenge thus 'resides in trying to understand how our use of new terms affects our understanding of old scenarios' (Owen, McRae, Adams and Vitale, 2009, p. 186).
Autism and parenting
That the characteristics of individuals labeled as autistic sometimes painfully clash with those that are categorized as autistic, is emphasized in studies that describe autistics and non-autistics as living in different worlds (e.g. Bagatell, 2007; Davidson, 2007). Especially in
family situations, where autistics and non-autistics intensively live together, this can be challenging (Macks & Reeve, 2007). Existing research on autism in families is mostly geared towards parents and siblings of children with autism and, interestingly, shows ambiguous results. Even though many studies indicate that an autistic child puts the family at risk for severe stress, social isolation and stigmatization (e.g. Macks & Reeve, 2007; Silverman, 2008; Sivberg, 2002), other studies claim that having a child with autism brings families closer together and enriches family life (e.g. Altiere & Von Kluge, 2009; Bayat, 2007). Similarly, results of research on outcomes for non-autistic siblings of autistic children range from very negative (poorer adjustment and social competence, high rates of depression) to very positive (well-adjusted, positive self-concept, good social competence) (see: Macks & Reeve, 2007). Several explanations are offered for these discrepancies, such as differences in social support for parents, different coping styles, the absence or presence of other demographic risk factors, or different stages in the process of learning to deal with autism in the family (Altiere & Von Kluge, 2009; Macks & Reeve, 2007). Apparently, having sibling or child with autism affects families in sometimes contradictory ways.
In the case of parental autism we cannot draw from such a vast body of literature. Contrary to long held assumptions, recent studies indicate that adults with autism do engage in long term relationships (e.g. Howlin & Moss, 2012; Lau & Peterson, 2011; Vinke-Van Stein, 2013) and start families (Vinke-Van Stein, 2013). How parental autism affects children and the family as a whole, however, has hardly received any scholarly attention. Nevertheless, I would argue that the case of parental autism is an interesting one because autism characteristics are likely to interfere with parents' ability to engage in responsive behavior towards their children, which may negatively affect the developing child. This is especially the case for the impaired empathic abilities that characterize autism. Several strands within cognitive psychology ascribe these impaired empathic abilities to a failing 'theory of mind'. Individuals with autism are said to have difficulty grasping 'that other people are able to understand the world mentally (i.e. have minds)' (Travis & Sigman, 1998, p. 65, see also: Baron-Cohen, Tager-Flusberg & Cohen, 1993; Senju, 2012). As a result of this difficulty to understand the mental states of others, autism may seem like 'egocentrism in the extreme' (Lombardo & Baron-Cohen, 2011, p. 134). Even though the rationale behind the theory of mind hypothesis is contested, the concept of mindblindness offers an interesting and capturing metaphor for what I consider to be the autism characteristic that is most likely to influence parents' ability to be
responsive. Some nuance, however, is required because individuals with autism are not fully unable to empathize with others. Smith (2009) and Jones, Happé, Gilbert, Burnett and Viding (2010) point out that a distinction should be made between the affective and cognitive components of empathy. They stress that autistic individuals are capable of experiencing emphatic feelings, but struggle with the cognitive aspects. If social information is presented in such a way that they are able to understand the point of view of others, they appear to show as much compassion as neurotypicals. Also, to compensate for their difficulties with empathy's cognitive component, individuals with autism are also known to compute what others may feel, which allows them to navigate through the neurotypical world with varying degrees of success (Massoff, 2007). Trying to fit in and adapt to this world with all its unpredictable emotions and social interaction, however, requires a great deal of energy and is described as being emotionally exhausting (Bagatell, 2007; Davidson, 2007). As a result it is not possible to engage in adaptive strategies permanently. As such, despite possible compensatory strategies, mindblindness is likely to eventually hamper the ability of parents with autism to engage in responsive behavior towards their children. If this is the case, and how this may affect children and family life, is not fully known. The (to my knowledge) only existing study of parental autism and family life conducted prior to the current one, indicates that parental autism has a negative effect on family life and the parent-child relationship. The author states that parents who are more rigid and have fewer social competence, have more difficulty expressing their emotions towards their children and experience more conflict situations (Vinke-Van Stein, 2013). Even though these results offer a first glimpse into the reality of growing up in a family with a parent with autism, underlying processes and a wider context are not discussed. Furthermore, most of the data in this research (except for the measurement of the parent-child relationship) were the result of questionnaires completed by parents. Because many of these parents had autism, which is characterized by limited self-awareness (Vinke-Van Stein, 2013) and the above described impaired empathic abilities (Baron-Cohen, Lombardo, Tager-Flusberg & Cohen, 1993; Lombardo & Baron-Cohen, 2011, Senju, 2012; Travis & Sigman, 1998), results may diverge considerably from children's perspectives.
The importance of context
From the literature presented above, we can assume that having a parent with autism presents a developing child with some challenges. This, however, is only part of the puzzle. How children perceive the way in which they are parented and how this affects them most likely
depends on more than the presence or absence of autism characteristics in their parent. For example, research by Willems, De Vries, Isarin & Reinders (2007) in families with parents with a learning disorder shows that the quality of parenting not solely depends on IQ, but more so on (among other things) the quality of the social network of the parents. Similarly, Bertilsdotter Rosqvist and Lövgren (2013), who studied discourses of reproduction among (potential) parents with an intellectual disability or autism, state that appropriate (social) support can constitute the difference between ‘good enough’ and insufficient parenting. After all ‘human beings do not grow up, and adults do not parent in isolation, but in multiple contexts’ (Bornstein & Cheah, 2006, p.3). To understand the experiences and perceptions of children that grew up in a family with at least one parent with autism characteristics, we must thus expand our scope beyond the nuclear family and also focus on the (social) contexts in which it is embedded. These may offer parents (as well as children) resources that allow them to compensate for the the challenges that autism brings to the family. The concept of (social) resilience is helpful here. Even though this construct is still 'in the making' (Keck & Sakdapolrak, 2013, p. 13), it assists in unraveling the complex processes that are involved when individuals, in this case children of parents with autism, try to sustain their well-being under less than ideal circumstances. Because my research is aimed at emic perspectives, I refrain from the more etic, normative definitions that are often employed in resilience research (Bottrell, 2009). Instead, I will employ Ungars (2011) definition, which leaves room for the subjective experience of individuals and allows for cultural diversity. He defines resilience as ‘both the capacity of individuals to navigate their way to the psychological, social, cultural, and physical resources that sustain their well-being, and their capacity to negotiate for these resources to be provided and experienced in culturally meaningful ways’ (Ungar, 2011, p. 10). Ungar stresses that resilience is not a characteristic of individuals, but a process that is the result of interactions between individuals and their environment, in which (social) environments either facilitate or block individuals access to resources that enhance well-being. As such, 'the study of resilience should involve context first and the child second' (Ungar, 2011, p. 11).
To tease apart the social contexts in which children of autistic parents are embedded, the current study adopts concepts from family systems theory and Bronfenbrenners 1994 version of ecological systems theory. The concepts borrowed from family systems theory are employed to designate the interactions between different 'sub-systems' within the family,
namely: the parent-child system (which, for clarity reasons, I divided in autistic and non-autistic parent), the marital system and the sibling system (for more information on family systems theory, see for example: Cox & Paley, 1997; Rothbaum, Rosen, Ujiie & Uchida, 2002). Concepts from Bronfenbrenners ecological systems theory help to prevent over-interpretation of individual behavior, because it forces one to be aware of the different environments in which individuals are embedded, which influence and are influenced by individual behavior (Llewellyn & Hogan, 2000). Bronfenbrenner (1994) approaches the contextual environments in individuals are situated ‘as a set of nested structures, each inside the other like a set of Russian dolls’ (Bronfenbrenner, 1994, p. 39). He distinguishes five contextual layers: micosystem (pattern of activities that take place in the immediate environment of the individual), mesosystem (contains linkages and processes between the different microsystems in which the child is embedded), exosystem (contains linkages and processes between minimally two settings in which at least one setting indirectly influences but does not contain the individual), macrosystem (an overarching system that contains a 'societal blueprint for a particular culture or subculture', p. 40), and chronosystem (changes and consistencies over time within an individual or the aforementioned systems).
METHOD
Since the current study explores a topic that has not received much scholarly attention in the past, it was important to adopt a research method that was flexible and allowed me to follow my data rather than forced me to maintain a narrow focus on preconceived hypotheses. For this reason, I adopted an inductive, qualitative approach in which the aim was to explore and (if possible) understand and explain. Qualitative methods also allow for ‘an exploration of specific contexts and particular individuals’ (Brantlinger, Juminez, Klinger, Pugach & Richardson, 2005, p. 203), and have the potential ‘to provide a more comprehensive picture of lives lived under adversity’ (Ungar, 2004, p. 358), which matches my aim to contextualize the perceptions, experiences and compensatory strategies of children of parents with autism neatly. Semi-structured interviews allowed me to study participants' stories in depth, without compromising comparability. To facilitate these interviews, a topic list was developed. Sensitizing concepts on this list were derived from the 1994 version of Bronfenbrenners ecological systems theory (micro-, meso-, exo-, macro- and chronosystem) and family systems theory (parent-child, marital and siblings system). During interviews, these concepts
assisted me in systematically discussing the contextual layers in which participants were embedded.
Because non-autistic children of parents with autism are a hidden group, tracing them was initially challenging. Eventually I was able to locate two Dutch websites aimed at this specific target group, and after contacting the webmasters of these websites I was allowed to place an online recruitment advert. Initially this did not lead to any response, but after altering the advert in such a way that anonymity was more explicitly stressed, I started receiving applications for interviews. One of the website hosts volunteered to e-mail my advert to her contacts, which also resulted in several applications. Participants were selected on three criteria: 1) they were non-autistics themselves (i.e. they had no diagnosis); 2) they did not live at home with their parents anymore and 3) they were born between 1942 and 1962 or 1972 and 1992. The first criterion was established to rule out differences that might occur as a result of participants labeling themselves as either autistic or non-autistic, which might influence their perceptions of the autism of their parent. Criterion number two was of an ethical nature; the interviews might stir up emotions which might lead to a deterioration of the parent-child relationship, which is especially undesirable for those still living at home. The third criterion was developed to compare individuals that grew up in different historical periods. Initially, the current study was guided by the assumption that parental autism could affect individuals growing up prior and after the 1970's differently, because the ideal of responsive parenting only became more dominant since the 1970's, which could lead to an increased (perceived) incompatibility between 'autistic parenting' and dominant parenting norms. As will become apparent later in this article, this specific difference between age cohorts was not present and as a result this particular comparative element was dropped at a later stage.
Through the three selective criteria, a number of 30 participants was recruited, all but one female. The division across categories was as follows. In the youngest age cohort, 4 participants had a father with autism, 6 had a mother with autism and 2 had a father and mother with autism. In the oldest age cohort, 10 participants had an father with autism, 4 had a mother with autism, and 4 had a father and mother with autism. Only four participants had a parent with an official autism diagnosis, others strongly suspected their parent to be autistic. This was to be expected, because autism only gained prominence in the 1990's (Bagatell, 2010), and as a result especially parents of those belonging to the oldest age cohort were
unlikely to be officially diagnosed. Given that my focus is on the experiences of those under study rather than a 'correct' diagnosis, I did not discard these lay diagnoses. Finally, to validate my findings and gather additional data, I visited a meeting for children of parents with autism at an autism information center and discussed my research results.
In my original research design I intended to conduct sibling interviews, which would allow me to avoid a one sided view of participants' families. It soon became apparent, however, that most participants valued their anonymity so much that this was not an option. Interviews with selected participants mostly took place at their homes and started with looking at and discussing some family photo's that they had prepared. These photo's helped them to remember past events and offered a natural way to discuss all family members and their interrelationships.
All interviews were recorded (with permission), transcribed and uploaded in Atlas.ti software (version 7.1.7). To analyze my data, I adopted a mix of grounded theory and narrative analysis by first going through the stages of open and focused coding and then continuing with the narrative part of the analysis. Combining these methods compensated some of the weaknesses that result from applying them individually. Grounded theory is category centered and concentrates on themes across cases, which may lead to 'stripping away the individuals and their experiences' (Lal, Suto & Ungar, 2012, p. 13), whereas narrative analysis is case centered and focuses on themes and sequences within cases, which may lead to an overly personal approach that does not transcend individual narratives. Combining both approaches overcomes these weaknesses and allows one to analyze patterns across as well as within cases (Lal, Suto & Ungar, 2012). Including narrative analysis also offered another advantage; it forced me to not only look at what participants told me, but also how and why they told it, thereby drawing attention to processes of semantic contagion and how this could influence their stories.
FINDINGS
A mindblind parent
‘You know, our family may have been rich on a material level, but on an immaterial level we were poor’, explained Nel, a woman in her fifties who was raised by a father with autism and a non-autistic mother. In this one sentence she adequately captured the sentiments of most of
the participants that took part in this study. The majority of my informants grew up in a traditional Dutch family in which father was the breadwinner and mother was a housewife. To the outside world, these families seemed to be doing well. Below the surface, however, something appeared to be missing. This 'something' is inextricably linked to the concepts of mindblindness and responsive parenting. Participants portrayed their parent with autism as largely unable to empathize with the thoughts and feelings of their children (i.e. mindblind), which resulted in an unresponsive approach to parenting (i.e. parents were unable to 'accurately perceive and promptly respond' to the child's signals: Eshel, Daelmans, Cabral de Mello & Martines, 2006, p. 992) that directly and indirectly influenced family life negatively. This mindblindness and the resulting unresponsiveness of their parent translated into either a withdrawal from family life (more common in fathers) or a rigid parenting style with a strong emphasis on rules and regulations and little room for spontaneity and emotions (common in both fathers and mothers), and sometimes a combination of both. Some of my informants described their parent as ‘parenting from the head, rather than from the heart’, because their parent employed intellect to compensate for a lack of parental instinct. Interestingly, predominantly participants with an autistic mother emphasized this rational parenting style, which suggests that expectations were different for fathers and mothers. Some of my informants underlined this assumption by stressing that they expected that having an autistic mother probably had more severe consequences than having an autistic father. This was because a mother supposedly had a different role to fulfill in raising a child, which involved a greater deal of responsiveness and emotional warmth. The excerpts below illustrate what the rational parenting style of mothers with autism might look like in daily life:
We were raised in complete accordance with the rules of Dr. Spock. Well, in my opinion we were drilled rather than raised. With punishments and rewards. Good behavior was rewarded and for bad behavior we were punished. I realized that at a very early age.
Hanneke, 64, raised by an autistic father and mother (note that the terms autism and non-autism are employed here for clarity reasons only)
Well, yes, she was always very strict. I remember an incident when I was 11 or 12 and I had injured my leg while playing sports. I had to go to the hospital and needed a compression bandage, and I had to return to the hospital a week later. But I wanted
to continue sporting! After a week the doctor said: ‘well, you are still not completely recovered, so I will tape your leg. You cannot play sports for another two weeks’. I was so disappointed that I started to cry. I don’t remember exactly what I then said to the doctor, but when we left I politely said goodbye to him. But my mother was furious, because I did not say ‘goodbye doctor’. According to her, I behaved like a total jerk, an unmannerly child.
Vera, 25, raised by an autistic mother and non-autistic father
As Vera later explained, she now realizes that her mother was not able to empathize with her sadness. To her, this was a simple case of a breach in etiquette rules, stripped of its emotional component. Several of my informants describe similar situations, though some parents (with autism) seemed to react more empathic in situations that involved physical discomfort in their children, like the removal of their tonsils. Often, the unresponsiveness the parent with autism, was a major theme in our conversations, especially when it concerned emotions. When I asked participants how their (autistic) parent would respond to with emotions of family members, the answer was often: ‘not! He/she did not respond to emotions’. Frequently, my informants described themselves as emotional beings growing up in an environment where emotions were considered to be irrelevant or even repulsive. To deal with this, they often developed what Ungar (2011) labels ‘hidden resilience’, an atypical adaptation to an environment where (in this case emotional) resources are sparse. For many children this meant that they found a way to hide their emotions. Hanneke, for example, was able to adopt a neutral facial expression which concealed her emotions and Berta made sure that she only cried when no one was there to witness her:
E: A while ago you told me that you once went to the toilet to lock yourself in and cry. Did this happen more often? And how did your parents deal with emotions in general? B: They did not
E: So, if you cried for example, how would they react?
B: I made sure they did not see me. I cried alone. And at a certain moment I would think: ‘ah, the milk machines have stopped [her parents worked at a farm], so now I will stop crying, because otherwise they will see it’. If I cried, I would be belittled.
Parents' problematic recognition of their child's immaterial needs often led to boundary issues. Several participants described how their emotional and spatial boundaries would often be transgressed because their parent with autism would not sense that certain behaviors were embarrassing, hurtful or offensive for their child. Willemijn, for example, pointed out how her mother with autism would constantly invade her privacy by reading her diaries and sitting in her bedroom when she was at school. To satisfy her need for boundaries, Willemijn (like several others) resorted to a material substitute:
W: So…. and this is strange, I realized this only recently, as a child I always had spots in the house where I hid myself. Really, until I was about 18 years old.
E: You mean literally [hiding yourself]?
W: Yes, well, everyone knew where I was, but that space was mine so to speak. Just with some cloths, covering a table and sitting underneath it. Or on a balcony, fencing off a corner. (…) And then I’d sit there and, well, paint or whatever. That was my spot. No-one could come there.
Willemijn, 54, raised by an autistic father and mother
By creating these visible demarcations, children like Willemijn were able to secure their own spatial and emotional boundaries. Creative solutions like this show that these children, despite apparent adversities, were still able to invent strategies that enhanced their well-being. As I will discuss later, however, some of the strategies they developed would backfire later in life.
The non-autistic parent; compensation or complication?
Even though a minority of participants indicated that both of their parents (probably) had autism, most of them stated that they also had a autistic parent. In some cases, this non-autistic parent tried to play a compensatory role, for example by letting children play in the living room when the parent with autism was not home, or by offering emotional support. How this was perceived, however, varied among participants, because parents sometimes tended to overcompensate:
My mother is very standoffish, not cuddly. Not really, well, she did not take care of you, feed you. That was noticeable when we were kids. My father actually had this role a little more, he took over the maternal role. He went shopping with us, because
my mother did not want that. For her these things took too long. So he did this more often.
Janneke, 24, raised by an autistic mother and a non-autistic father
Well, she [her non-autistic mother] was very nurturing towards me. Very protective, she always wanted to cuddle. To me this felt a bit suffocating. (…) I felt like: I need air you know, I don’t always want to sit on your lap. But she found that difficult because she tried to make up for what my father could not offer.
Heleen, 50, raised by an autistic father and non-autistic mother
For most my informants, their non-autistic parent was a source of complication rather than compensation. From their descriptions it seems that struggles that took place in the marital system, spilled over to the parent-child and siblings system. These struggles were often thought to be the result of mutual misunderstandings between parents, which would frequently lead to frustrations. My interlocutors would point out how non-autistic parents, for example, expected their spouse to offer emotional or practical support, but instead they were faced with incomprehension and aloofness. Often, parents' relationships would be or become a-symmetrical: one parent was dominant and the other submissive. These patterns occurred regardless of gender or (non-) autism. A non-autistic father, for example, could be dominated by his wife with autism and vice versa. These a-symmetrical relationships seemed to create a situation of strong mutual dependence; parents could not live with or without each other. This was underlined by the fact that, despite frequent conflicts, only one of the participants had divorced parents. My interlocutors often described how the struggles that took place in the marital systems had severe consequences:
F: Yes, well, she had no choice. Because people from this generation do not separate. But she said to me, if I had known everything in advance, I would never have married your father. And I never would have had any children.
E: What was it like to hear her say that?
F: Terrible! Well, during my entire childhood she said that to me. She screamed to us, she just could not handle us children. There was always a suitcase beneath the closet too, she’d say: ‘I’m leaving! You just find another mother!’. Then she’d leave and I
would stand there with three screaming brothers. You know, that’s just very sad. These two [parents] have simply destroyed each other.
Fleur, 52, raised by an autistic father and non-autistic mother
You had these bomb shelters, from the war, with steel doors, small peepholes and really large bolts on them. That was built to survive bombardments. My sister used to say, and she had witnessed the process where my mother slowly shut herself off from my father (…), she is shutting her ‘war doors’. So, these doors from the bomb shelter, bam, lock it, my father on one side and she on the other. Him banging. (…) My mother was trapped. Her mode of survival was closing these doors for my father, but also for me. So, I did not get this attention and care from her.
Henk, 59, raised by an autistic father and non-autistic mother
As Henk, Fleur and several others described, non-autistic parents cold become so overwhelmed by their own struggles that they were no longer able to be emotionally available for their children. In cases like these, when both parents were unable to support their children, brothers and sisters sometimes stepped in, or were forced to do so by their parents. However, as Henk stressed:
They are only able to do this like sisters can. They can love their brother very much, until they go on and play with a friend. Then you have to get back into your playpen or cradle. So this cannot be a replacement [for a mother].
Participants with younger brothers and sisters would often adopt roles similar to that of Henk's sisters. As such, they became a surrogate parent to their sibling. Some of my interlocutors also became a parent to their parent. They would, for example, explain to their parent with autism how emotions 'work', or offer emotional support to their non-autistic parent. These processes of parentification forced them to act beyond their years:
Looking back on it you think, well, I already did that! I learned all of this because he [father with autism] never knew what clothes we needed, for example. And then we went, we did not have a car back then, we went to [name of city] by bus, because
there she [mother] would be in the hospital, and I made sure that we all had clothes to wear. And I remember how my stomach hurt, and how nervous I was and my father was only concerned with what time the bus would come.
Nienke, 58, raised by an autistic father and non-autistic mother
As a result of having to parent their parent(s) and siblings, children like Nienke gained a sense of independence at an early age. At the same time, however, they were often forced to comply to the strict rules of their parents. This absence of clear boundaries between the parent and child role led to a complex situation in which children came to see their parent as a child in need of attention, but at the same time as the person making the rules. This inconsistency was often difficult to comprehend.
The world outside
As stated before, how children experience their childhood and the way in which they are parented is only partially determined by processes taking place within the family. Interactions between family members and the social contexts in which they are embedded directly and indirectly influence (and are influenced by) the experiences and perceptions of the developing child. An example of a for children important indirect influential factor was the job of their parent. This exosystem (e.g. the system that contains linkages and processes between minimally two settings in which at least one setting indirectly influences but does not contain the individual) had a strong gendered component. Most families had a traditional division of tasks where father was the breadwinner and mother stayed at home with the children. This, of course, meant that a father with autism and a job would be away from home more often, and an a mother with autism would be at home more frequently. Some of the participants describe how, when their (autistic) father was away, they were allowed to ‘be themselves’ and bring home friends, something they felt was not possible when their autistic parent was home. The job of parents with autism, however, did not always have positive side-effects. As a result of social and communicative difficulties, the parent with autism would often experience problems at work, which influenced their behavior at home negatively.
R: He worked overtime a lot. (…) And once he was head of the department. That didn’t work at all because he lacked a general overview, he did not understand the people.
E: How long did he have that job?
R: Oh, for years! But eventually he had a burnout and became depressed. It really did not go well. But he wanted to continue working, to make money.
E: Did this at all influence how he behaved at home?
R: Yes, absolutely! Well, of course he never liked his job. He worked to earn money. (…) As a child I found that difficult, he was often gloomy and could react in a very angry way. I noticed that.
Renée, 26, raised by an autistic father and non-autistic mother
For possible reparative contacts outside the nuclear family, children initially were dependent on the social network of their parents. According to my informants, however, these networks left a lot to be desired. Parents had no or only a few friends and these friendships were often described as superficial. As several interviewees said: ‘my father/mother has no friends’. For their parent with autism, they was mostly attributed this to an inability to engage in reciprocal friendships and a tendency to display socially awkward behavior. Existing friendships would frequently fall apart because the parent with autism would make a poorly timed inappropriate remark, or because he or she would rigorously end friendships over what (to my interlocutors) seemed a trivial incident. Somehow, most of the non-autistic parents did not, or were not able to build their own social networks independently of their spouse, which might be a consequence of the described mutual dependence that characterized their marital relationship. Social contacts of parents, or the lack thereof, influenced their children greatly as a decreasing social network of parents indirectly reduced the (potential) social network of their children in the earlier stages of their life, and thus their social resources.
As children grew older, most of them gradually developed their own social networks. These networks seemed crucial for maintaining or achieving a sense of well-being, especially in participants that grew up in families with very little social resources. The story of Berta, a 53 year old woman who grew up in a family with two autistic parents, demonstrates how even in an environment that seemed deprived of reparative social resources, very scarce positive contacts in extrafamilial microsystems could be employed to enhance well-being.
B: Well, I did not have many friends, and the friends that I did have were also physically abused, or belittled. So, in a way, I thought that it was quite okay at my
home. That I was actually lucky.(….) What I did have, is that I collected money for charity. Three times a week, my mother pressed me to do this, but this has been my good fortune. Because of this, I often visited people in the village. And I saw that people actually talked to me. So I came there, about two times a week to collect money, and once every eight weeks with the church magazine. So, then people would talk to me. And I thought: wow, this is also possible, that people just talk. That people like me! That they are warm hearted. This has been my good fortune.
E: What was it like to experience this?
B: That was great! Really great! Some of the people were very curt and did not talk to me, but several people loved me. (…) And this has been my good fortune, through this I had lots of positive attention. (…) But I could not understand it. How was this possible? It seemed as if you came into a different world. It was wonderful. That people can be so warm hearted was totally strange to me. But also very pleasant.
Berta, 53, raised by an autistic father and mother
Children like Berta often described small crucial contacts, like a grandmother that believed in them (but that they saw only once a year), or a teacher that they could always fall back on. These vital contacts allowed them to experience the warmth and closeness that was not present at their parental home. Parents, however, sometimes played an obstructing role in gaining access to these social resources. Several of my informants describe how their parent with autism would often disapprove of friends they brought home, or how the eccentric behavior of their parent would be a complicating factor. As one of the participants said: ‘I soon learned that friends are nice, but not to bring them home’. Heleen explains how her fathers unusual behavior negatively influenced her social life.
H: At lunch time, he took a nap. He was his own boss, so he would come home and eat and then he would sleep. He would lay on the floor, next to the table, on a pillow. Such a strange habit! It was very unpleasant when I brought friends home.
E: How would they react?
H: Well, it was very embarrassing. Only good friends knew it, they had become accustomed to this and simply continued eating. And meanwhile my father would just lay on the floor. Sometimes he said: ‘you now have to shut up, because I am going to
sleep’, and then a friend would sit there with a sandwich like: ‘what is happening here?!’. Some of them would say: ‘that is not normal, right?’
Heleen, 50, raised by an autistic father and non-autistic mother
Another complicating factor was the tendency of parents with autism to behave differently in different microcontexts. This phenomenon was mentioned by several participants. Besides being confusing for the children, it also played an important role in obstructing resources. Julia’s story elaborates this effect.
In class I apparently was a bit absentminded sometimes. So at a certain point the teacher came to me and asked: ‘is everything all right at home?’. And then I had the courage to tell her [about the problems with mother]. She wanted to go to my parents, to talk to them. After this happened, the teacher took me aside and said: ‘you have such nice parents, so terrific!’, and I thought: ‘oh, never mind’.
Julia, 50, raised by an autistic mother and non-autistic father
Several participants describe how their parent with autism, like Julia’s mother, was able to present him- or herself s in such a way that to the outside world everything seemed in order. One of my informants stated that her mother with autism would even switch accents in different social environments, thereby imitating the people she was with at that moment. As a result of these behavioral switches that often took place at a mesosystem-level (the system that contains linkages and processes between the different microsystems in which the child is embedded), teachers, acquaintances or social institutions would not be alarmed and children would not be offered the help and support they needed. Furthermore, children like Julia that dared to speak up, were discouraged to seek further support after those they confided in would not share their concerns.
Puzzled by this phenomenon of (unintentional) 'two-facedness' in parents with autism, I discussed it at a meeting at an autism information center. The individuals with autism that were present explained that the 'less charming' behavior they displayed at home signaled that they felt comfortable there. In a family environment they did not feel the need to uphold the energy consuming socially accepted facade that they had to present to the outside world. The result was a significant difference between how they behaved in- and outside the familial microsystem. One of the non-autistic attendants of the meeting sighed: 'if they could only
behave the way they do outside the home for five minutes when they are home, or vice versa'. The latter would allow people from outside the family to see what family members with autism acted like when whet were not making an effort, because usually outsiders would react like Julia's teacher.
Caught between the normal and abnormal
Even though participants describe that they, as children, experienced difficulties as a result of the behavior of their parents, most of them initially did not consider their family to differ from other families. For the majority of participants, this gradually started to change as they hit puberty. This phase in their life was frequently accompanied by increased conflicts with their parent with autism. Children often reacted to these conflicts by either extreme adaptation or rebellion. Within families, siblings would regularly adopt different strategies which resulted in sharp differences between those that complied to their parent(s) rules and wishes and those that did not. The excerpts below capture how this transition to puberty and its consequences were experienced:
P: Later, when I hit puberty, I started to wonder why things were a bit strange [at home]. When I was about 14, my father started snapping, he made very derogatory remarks towards me. And that was the time things started to get rough.
E: You mean when he became more negative?
P: Yes, because I think the world of children is rather simple. He could handle that. But he did not know how to deal with teenagers.
Patricia, 25, raised by an autistic father and non-autistic mother
S: So you hit puberty and I really thought: now I am done. I am somebody too, and I have my own life. And then I started to rebel against my father. (…) I suddenly started to talk about my feelings. And then he gets like arrrrrggggghhhh!
E: How did he react?
S: He just cannot handle it. He terminates the conversation.
Sanne, 52, raised by an autistic father and non-autistic mother
Realizing that their families were not average and reflecting on this, appeared to be an important step in the process towards resilience. It allowed children to attribute some of the
difficulties they experienced in life to their parent(s) instead of themselves, which resulted in an increase of psychological resources through a decrease of self-blame. Extrafamilial microcontexts again were crucial in this process because these contacts allowed children to make a comparisons, for example between their parent and the parents of their peers.
When I was 8 or 9 years old, I had dinner at a friends house and her mother said: 'would you like to have some broccoli?'. And I said: 'no, thanks'. She said: 'I suppose they do not eat this at your home'. That kind of things. Or not knowing what spaghetti was. (…) Somehow, I knew that this was not entirely normal. But in high school you start to change. Your personality changes of course. You start to look at things differently and wonder... what could be wrong? Then you start to see many differences. Because I started to get away so often when I was 14 or 15, with friends, I started noticing that things at home were a bit more superficial than with other people'.
Janneke, 24, raised by an autistic mother and non-autistic father
Children like Janneke, that spent much time in extrafamilial microcontexts, seemed most likely to conclude that 'something' was different about their family. Those that lacked this type of contacts appeared to notice these differences later in life, for example after they moved out of their parental home. Interestingly, participants who grew up in more recent decades, also seemed more likely to label their family as 'different' , but not as a result of a perceived mismatch between their parents and dominant parenting norms, as was originally hypothesized in the current study. Societal changes, however, may have played a role in these differences. It appears that those growing up in the 1950's and 1960's were more confined to the social networks of their parents than those growing up in the 1980's and 1990's. Children that grew up in the 1950's or 1960's for example more often told me that their peer group predominantly consisted of cousins or the children of their parents' friends. Individuals that grew up in recent decades more often seemed to have peers unrelated to (the networks of) their parents. Having contacts outside the networks of their parents may have resulted in a more diverse social network that offered them more options to come into contact with adults and children that were different from their parents. Another societal change that may have contributed to early recognition the differentness of their parent was a described increase in openness about family-related problems. Participants that grew up in the 1950's and 1960's
often stated that is was considered taboo to 'wash ones dirty linen in public', whereas those growing up in the 1980's and 1990's more easily discussed their family problems with friends. As a result, making comparisons and noticing differences between their parents and parents of friends, became easier.
The consequences of realizing that their families were not average, were not always positive. Participants (from both age cohorts) also grew more perceptive of a mismatch between their families and the world outside. Several of my interlocutors describe their family and the world outside as incompatible worlds between which they, somehow, had to navigate.
I notice that I find it difficult to.... I feel that alienation, mostly towards myself because I am so used to it. At home I am used to it being like that, and I am used to the outside world not being like that. In a sense it is like living between two cultures. At home there are facts, emotion does not matter. That is of course something that tore me apart. Because outside the family emotions do count.
Neeltje, 35, raised by an autistic father and mother
When I was 12, I realized that I started to get in trouble as a result of what was expected of me at home and how they [her parents] sent me to school. (...) In the time that I still lived at home, I lived in different worlds. You had school where things were very different from how they were at home. (…) The things that young people do, were definitely 'not done' at home.
Femke, 52, raised by an autistic mother and non-autistic father
When participants left the parental home to live on their own, they were even more confronted with the mismatch between family culture and dominant culture. At home they had developed skills that allowed them to sustain a sense of well-being in an atypical environment. These skills, like hiding their emotions, extreme adaptation and conflict avoidance, and not articulating their wishes, were now no longer beneficial. Rather, they had become harmful; what had been a source of resilience, was now a source of vulnerability. Often, this prompted participants to start reflecting on their own normality or abnormality, and whether or not the difficulties they experienced in life were the result of their upbringing or the result of inborn traits. This painful dilemma left them with uncertainty regarding their identity. During interviews, this dilemma would sometimes surface again and often I would
find my interlocutors trying to convince me (and perhaps themselves) that their problems
must have been the result of their upbringing. Attributing problems to their upbringing,
however, did not mean that they did not attempt to actively improve their situation. Again, extrafamilial microsystems played an important role here. Participants describe how they, for example, consciously tried to enhance their social skills by imitating the social behaviors of their friends or colleagues, or enrolled in socially oriented studies and jobs like pedagogics, social work or nursing. The question remained, however, whether or not these newly acquired skills were a 'real' part of their personality or not. Willemijn (52), for example, described how she had always entertained many friends at her house and suddenly realized around her fiftieth birthday that, in fact, she was not that sociable. Roos, a young woman, was still in the middle of the process of defining her personality:
R: For example, I learned myself to say sorry to people. That's how basic it is. I have learned nothing about social rules. Nothing, nothing, nothing. So, simply saying sorry to people when you have done something wrong, or giving or receiving a compliment. I have taught this to myself, I did not know it before.
E: Where did you learn this?
R: Just by watching others. And then you did it like that as well. E: Is this a conscious process?
R: Well, I started to work on this consciously. But I always had a high self-reflective capacity. I can assess very well how my behavior looks to others. What is desirable in a certain situation and what is not, what is expected of me. (...)
E: How do you determine what does or does not fit your personality?
R: Well... that is interesting. Well, it was like: this feels good. It is not that difficult to say sorry. (…) So it felt... like it was something I could really make my own, because it was really me. On the other hand, that is true, how do you really know that this [conclusion] comes from your own identity?
Roos, 25, raised by an autistic mother and non-autistic father
Despite these difficulties and dilemmas, most participants were able to develop new skills that enhanced their well-being and contributed to a sense of normalcy. However, as many of them stressed, it was not possible to fully catch up with individuals that had acquired these skills earlier in life. Those that decided to start their own family were presented with
additional challenges. Most of them were determined to raise their children differently from how they were raised themselves by being a more responsive, less rigid parent. For some, the experience of being a parent painfully brought to the fore what they had missed out on themselves. Furthermore, in several cases the difficulties resulting from their own problematic childhood would resurface in the relationship with their child (especially if this child had autism). My informants would, for example, have difficulties defining boundaries for their children or feel hesitant to hug their child because they were not used to this themselves. As such, what had started out as a problem originating from their own upbringing had now become a transgenerational problem that had the potential to affect the next generation as well.
Semantic contagion; a vehicle for resilience
Up until this point I have mostly covered what was described by my interlocutors. In the context of Hackings (1995b) concept semantic contagion (the understanding of the past in present terms), it is also essential to also ask: 'why was the story told that way?' (Riessman, 2001, p. 5)? For my informants, semantic contagion seemed to be much more than a side effect of retrospective labeling; it appeared to be a vital step towards increased resilience because it offered them a culturally meaningful answer to a lifetime of unexplainable hardships. Prior to 'discovering' autism, participants state that they were often only able to describe what they thought their parent lacked. Interestingly, in both age cohorts these descriptions closely resembled definitions of responsive parenting (or derivatives thereof), an ideal that gained prominence in the 1970's. My interlocutors would, for example, describe how they felt that their parent did not 'truly' respond to their emotions, responded in inappropriate ways, or seemed unable to show any interest in their activities. It seems (for the oldest age cohort) that through the process of semantic contagion, the concept of responsive parenting offered them a way to (re)describe what they had experienced but could not yet articulate. This concept, however, was not sufficient to explain the behavior of their parent. As Femkes story demonstrates, finding an explanation was difficult:
As a child I thought it was the pedagogical system. Then I thought it was because my grandparents were divorced. Then I thought: isn't it a case of borderline? That was when I started to go a bit further with this. And then I thought, no, it is not borderline, because I could not tick off [all characteristics]. Then I compared it to all psychiatric
disorders. Then I thought that it was acquired brain impairment, because at age 7 she had glass splinters in her eye. Then, throughout the years, I kept observing, I could not really place it, it never really fitted. My mother is not retarded. But she does behave that way. And that was atypical, with everything you could imagine.
Femke, 52, raised by an autistic mother and non-autistic father
Like Femke, most participants went through several (not fitting) explanations, like war trauma, an egocentric character, or a troubled childhood, before they embraced the concept of autism as an all encompassing explanatory framework. Often, this was the result of an autism diagnosis in one of their own children, which resulted in noticing similarities between the behavior of their diagnosed child and the behavior of their parent. Others arrived at this conclusion as a result of conversations with a therapist or after reading an article on autism. The results, however, were similar. Autism, through the process of semantic contagion, helped them to retrospectively understand and explain their parents' behavior and rewrite their life stories in a meaningful way. Statements like 'looking back on it, I now know that it was the autism' underline this tendency.
Interestingly, my interlocutors applied the label of autism differently for their parents than they did for themselves. When describing their parent, the concept of autism was utilized in such a way that it almost seemed to be a force in itself; as if autism caused their parent to behave the way he or she did. In doing so, participants seemed to strictly adhere to more recent autism definitions (mostly DSM-IV-TR criteria); autism was described as 'something' that caused an inability to engage in in reciprocal relationships, and to empathize with feelings of others. When participants described their own somewhat autistic tendencies they were more inclined to attribute this to the consequences of growing up in a family with an autistic parent. As such, all could be traced back to and explained by the autism of their parent. The story of Wilma clarifies how this helped participants to deal with negative past and present experiences:
E: How does it help?
W: Well... Now I am, because you can separate your anger better, I can say now that they have really tried, to the best knowledge and beliefs. On the one hand I can respect that, but on the other hand I see now that I, I may also acknowledge that I missed out on things, even though they they did their best, but there is simply a piece
they cannot offer, and I have missed that. They did not do it on purpose, but it still affects me.
Wilma, 42, raised by an autistic father and stepmother
In discussing their stories with me, participants seemed to engage in practices of biographical reconstruction (rewriting ones life story to fit new insights), which are also common in religious converts (Snow & Machalek, 1983). By verbally rewriting their pasts in such a way that these now fitted with the idea of autism, they actively involved me in their quest for enhanced well-being, as if in search of validation and recognition. Often they would impress on me the importance of more research and knowledge of parental autism, because, as one of my informants stressed: 'even today many children are growing up in families like mine, and they need help!'.
CONCLUSION AND DISCUSSION
This research was one of the first to explore the case of parental autism from a child's perspective. The stories of the adult children of parents with (suspected) autism, reveal that they perceived their childhood and relationship with their parents as problematic. Even though they were often well taken care of on a material level, their immaterial needs were lagging behind. As a result of the exterior appearance of prosperity, combined with (autistic) parents' tendency to behave differently in different microcontexts, problems mostly remained invisible to the outside worlds.
Concepts borrowed from cognitive and developmental psychology (mindblindness and responsive parenting) played a key role in describing and explaining the problems that children perceived. It was pointed out how, as a result of parents' difficulty to understand the actions, thoughts and feelings of their child (i.e. mindblindness), children's emotions were often ignored and boundaries were frequently transgressed. Participants characterized the parenting style of their parent with autism as unresponsive (i.e. parents lacked 'the ability to accurately perceive and promptly respond' to the child's signals, Eshel, Daelmans, Cabral de Mello & Martines, 2006, p. 992), and its effects as transcending childhood. Even though some of the non-autistic parents were able to compensate for this, most of them were a source of complication because problems in the marital systems spilled over to the parent-child and siblings system. Even though I did not assess whether the very specific negative effects that
developmental psychologists attribute to an unresponsive parenting style matched my findings, it is save to say that participants described an overall negative effect. It seems that mindblindness and the resulting unresponsiveness in one parent can directly and indirectly influence the entire family system negatively, which underlines Vinke-Van Steins (2013) conclusion that parental autism has a negative effect on family life and the parent-child relationship. By adopting a more comprehensive scope, however, the current study was able to offer insights in underlying processes. Applying concepts from family systems theory revealed the above mentioned processes that took place within families, whereas concepts from Bronfenbrenners (1994) ecological systems theory assisted in teasing apart the different contextual layers in which the children were embedded, which then revealed how these contexts were involved in children's journeys towards resilience. Findings highlight the contingent, context-dependent nature of these resilience processes; strategies that allowed children to sustain well-being in one context, could be harmful in the next. Living in multiple contexts that each required different strategies was often found to be confusing, and the adjustment of strategies after leaving the parental home was a complicated, slow process that often resulted in participants wondering what their 'real' identity was. As such, it seems that having an unresponsive parent is only part of the problem. The strategies that children developed to deal with this unresponsiveness became a problem in itself, and had the potential to transcend generations.
The current research reveals that extrafamilial microsystems played a crucial role in resilience enhancing processes. These microsystems allowed children to find compensation for what they lacked at home (for example: positive contacts), to make comparisons between their family and that of others, and it offered them opportunities to develop new skills. Meso- and exosystems seemed to play a more ambivalent role (for example: the tendency of parents with autism to act differently in different contexts, or the mixed effects of parents' jobs). The initially hypothesized differences between age cohorts, as a result of shifts in parenting norms, were not found. In fact, especially gender related parenting norms showed signs of consistency. Participants from both age cohorts seemed to have similar gendered expectations of their parents; mothers were to display more emotional warmth and responsiveness than fathers. Nevertheless, there are indications that macrosystemic changes unrelated to parenting norms played a role in small differences between age cohorts. As described, participants that grew up in more recent decades were more likely to have a social network unrelated to their
parents and could more easily discuss family problems, which could result in more fruitful possibilities for comparison.
Even though extrafamilial microcontexts were vital for resilience enhancing processes, we should not underestimate the power of the individual. Despite difficulties in the family system or sparse extrafamilial resources, children were still able to engage in creative strategies that helped them to sustain or enhance their well-being. So, even though Ungar (2011) stresses that resilience is not an individual trait and that agency should not be overestimated, current findings suggest that agency should neither be underestimated. Especially the processes of semantic contagion demonstrate how resourceful participants were; by engaging in these processes they actively transformed their previously inexplicable problems into a culturally meaningful explanatory alternative.
Though this research has produced some interesting findings, it comes with several limitations. First of all, the intended sibling interviews did not take place as a result of participants' need for discretion. Consequently, I was not able to compare different takes on the reality of growing up in the same family. Especially given the power of semantic contagion, it would have been interesting to see whether significant differences would exist between siblings. Another drawback of the current research is that most participants were recruited trough two websites aimed at children of parents with autism. Given that these websites tended to focus on the negative aspects of parental autism, it was to be expected that individuals visiting this website and reacting to my advert had negative experiences themselves. This may also explain why mixed results, like the ones found in the studies of siblings and parents of autistic children (e.g. Macks & Reeve, 2007) were not present in the current study; children of parents with autism who experienced an unproblematic childhood would probably not take part in my study. Finally, the absence of an official diagnosis in most parents might be less than ideal. Given the dates of birth of my participants' parents and the fact that autism only came to be more widely recognized in the 1990's, it was to be expected that most parents were undiagnosed. It might be interesting, however, to replicate the current study with children of parents with an official diagnosis. Future studies may take into account the above mentioned drawbacks and further explore the main themes that emerged from the current research. On a practical level, this study could inspire research aimed at development of interventions and counseling methods that match the specific problems children of parents with autism.
