Most people do not realize how common the phenomenon of neorodiverse relationships is worldwide. There does not yet exist a broad clinical and public awareness of adults with high-functioning autism, nor enough information about the well-being of women in such relationships. This topic has received very little attention in the literature and in research. The authors of this paper intended to fill this gap and conducted an empirical study exploring the experiences and health condition of women in neurodiverse relationships. Our study contributes to the sparse knowledge base and attains an informed statistically significant understanding of the physical and mental well-being of women in neurodiverse relationships. The findings presented are distressing and may stimulate an international multidisciplinary effort to change the recognition and treatment of women in neurodiverse relationships.
High-functioning autism (HFA), formerly known as Asperger’s Syndrome, is a neuro-biological developmental disorder first described by Hans Asperger in 1944. It was given scientific recognition much later, in 1981, as a result of an article published by Lorna Wing (Wing 1981; Baron-Cohen, Wheelwright, Robinson & Woodbury-Smith, 2005). Asperger’s Syndrome was first incorporated into the DSM-IV in 1994, under a category referred to as pervasive developmental disorders (PDD), which included four different syndromes (American Psychiatric Association, 1994). The syndrome that had the most significant effect on a shift in awareness was Asperger's, as it included people with normal cognitive and communication skills who exhibited some form of irregularity in their social skills (Attwood, 2006).
In May 2013, DSM-5 was published, introducing a dramatic change in the definition of autism. The term PDD was exchanged with the term ASD (autism spectrum disorder), thus replacing the four previous and separate terms that had been used in DSM-IV. The transition from multiple diagnostic categories to one single concept reflected a scientific consensus that the diagnoses that were previously divided into four subcategories were in effect referring to one mental state with varying levels of severity and symptomatic signs in two main areas: deficits in social communication and restricted, repetitive patterns of behavior (American Psychiatric Association, 2013).
From a clinical standpoint, it has been found that adults with ASD have higher rates of psychiatric comorbid disorders ,such as various personality disorders, obsessive-compulsive disorders, attention deficit disorders, learning disabilities, eating disorders and mood disorders, that may accompany ASD or develop subsequently as a side effect of ASD (Lai & Baron-Cohen, 2015 ; Lehnhardt et al, 2013). While there is a consensus that the disorder has a genetic component, the complexity and lack of distinct biological signs hinder the diagnositic process and make it especially challenging to detect with certainty (Attwood, 2006).
The most recent formal estimated rate of diagnosis with ASD is about 1 in every 54 eight -year-old children in 11 communities across the United States, or around 2% of the general population, according to a report based on data from CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network (CDC March 2020). ASD is about 4 times more common among boys than among girls (Baio et al, 2018).
Since Asperger’s was first introduced into the DSM in the 90’s, there has been a steady rise in the rate of patients diagnosed with autism, an association that can be mainly attributed to updates made in the diagnostic criteria and a rise in public awareness concerning the disorder. We now know that the incidence among children and adults on the autism spectrum is identical (Center for Disease Control and Prevention, 2016). "The lost generation" is a term used in reference to adults who weren’t diagnosed in their youth due to lack of criteria, prior to the release of updates in DSM-IV concerning Asperger's (Lai & Baron-Cohen, 2015).
Adults with HFA do in fact manage to participate in and be involved in normal social institutions. Many of them learned how to live with their social limitations due to the support they received from parents and the strategies and coping mechanisms they developed throughout their lives. However, the vast majority of adults with HFA who are undiagnosed manage a complex variety of significant and unexplained challenges which affect their social interaction as well as their intimate relationships (Baron-Cohen etal, 2005 ; Myhill &Jekel, 2008; Attwood 2006).
While the communities awareness of autism continues to show signs of growth little empirical research has been done on the way in which autism manifests itself within the context of romantic relationships and how it affects the partner of the one diagnosed with the disorder. The current literature on the subject is mainly based on personal accounts of women involved in these types of relationships (Bostock-Ling, Cumming & Bundy, 2012).
Neurologically typical (NT) is a neologism widely used in the autistic community as a label for people who are not on the autism spectrum. The term neurodiverse relationships (NR) is often used to describe intimate partnerships between one NT partner and one partner who is on the autism spectrum. Accordingly, intimate partnerships between two NT partners can be termed neurologically typical relationships (NTR).
According to the existent body of knowledge, women who are in NR report a pattern of ongoing emotional and sexual deprivation, as well as physical and mental symptoms that are reminiscent of symptoms of trauma and post trauma (Lewis, 2017). They describe a relationship categorized by domestic, physical and mental abuse (Rench, 2014), extreme challenges in communication and high levels of conflict (Aston, 2001, 2003 ; Bolling, 2015 ; Bostock-Ling, 2017 ; Bostock-Ling, Cumming & Bundy, 2012 ; Grigg, 2012 ; Millar-Powell, 2015 ; Myhill & Jekel, 2008).
Personal accounts of women in NR point towards significant negative effects of the relationship on their physical and mental health. What is common for most women in NR is a sense of: loneliness, confusion, frustration, desperation, mood swings, low self-esteem, problems with intimacy and the feeling that their sanity is being questioned. Their recurring complaints focus on the absence of emotional support and empathic understanding from their partner with ASD (Aston, 2001, 2003 ; Bolling, 2015 ; Bostock-Ling, 2017 ; Bostock-Ling, Cumming & Bundy, 2012 ; Grigg, 2012 ; Millar-Powell, 2015 ; Myhill & Jekel, 2008 ; Rench, 2014).
The literature suggests that a lack of competence of professionals in psychology and psychiatry in identifying symptoms and diagnosing ASD in adults, not only leaves these women without an effective response to their complaints, but in many cases, the inability to validate women's experiences and alleviate their distress worsens their condition (Aston, 2001, 2003 ; Bolling, 2015 ; Bostock-Ling, Cumming & Bundy, 2012 ; Grigg, 2012 ; Millar-Powell, 2015 ; Myhill & Jekel, 2008 ; Rench, 2014).
A small number of empirical studies investigated how ASD influenced intimate relationships. These studies focused on marital satisfaction and exhibited contradicting results. Bolling (2015) found a statistically significant higher rate of marital dissatisfaction in NR than in NTR. The NT partner was less satisfied than the partner with ASD and women reported to experience more dissatisfaction with regards to sexual intimacy than men. Millar-Powell (2015) also found significantly lower levels of relationship satisfaction in NT women than in their ASD partners. Two previous studies did not find differences in the level of marital satisfaction when one of the partners most likely had ASD, without being formally diagnosed (Lau and Peterson, 2011 ; Pollmann, Finkenauer and Begeer, 2010).
Renty and Roeyers (2007) found that increased levels of support on behalf of the partner with ASD led to higher levels of satisfaction in the marriage and that the amount of autistic traits had a negative effect on the couples’ ability to adapt to married life. Vaughn (2010) found that the amount of autistic traits influenced marital expectations. People with less autistic traits had higher expectations from their partner, while people with greater characteristics of autism had lower expectations from their partner.
Bostock-Ling (2017) investigated the life satisfaction of women in NR. The research group consisted of 500 female participants, 321 women whose partners were formally diagnosed and 177 women, who suspected their partners to have ASD. The control group included 53 women. The results showed that women in the research group experienced a statistically significant lower level of subjective well-being than women in the control group and than a normative sample of Australian women in all the compared domains. No significant statistical difference was found between women whose partners had a formal diagnosis and women who suspected their partner to be on the autism spectrum.
Bostock-Ling, Cumming and Bundy (2012) conducted a systematic literature review to study the influences of autistic traits on the mental well-being of NT women in NR. The decision was made to accept an informal diagnosis of autism. The articles that were chosen to be relevant had undergone academic peer review. Ultimately, out of 1736 articles derived from the initial archive search, there were only ten articles that met the inclusion criteria determined in advance, and six of these were case studies. None of these studies included intervention and they received a low overall grade based on the levels of proof and guidelines recommended by the Australian National Health and Medical Research Council. In summary, none of these studies provided reliable proof about the manner in which autistic traits affect the neurotypical (NT) partner in an intimate relationship. The systematic review indicated a lack of proof-based literature, and highlighted a lack of high-quality studies on which one may base conclusions about the mental well-being of NT women in neurodiverse relationships.
The Present Study
In order to increase knowledge about this important topic and change the existing situation, we conducted a quantitative study based on empirical data. Our aim was to find out what effects relating with someone with autism may have on the physical and mental well-being of NT women.
1. Women in NR and women who suspect their partner to be on the autism spectrum will report being subjected to physical and psychological abuse at a higher rate than women in NTR.
2. Women in NR and women who suspect their partner to be on the autism spectrum will report lower physical and mental health than women in NTR.
3. Women in NR and women who suspect their partner to be on the autism spectrum will report experiencing symptoms of depression more noticeably than women in NTR.
4. The personal sense of well-being of women in NR and women who suspect their partner to be on the autism spectrum will be reported as worse than the personal sense of well-being reported by women in NTR.