Parental Response to Diagnosis
KeywordsAutism Spectrum Disorder Autism Spectrum Disorder Emotional Stress Divorce Rate Autistic Disorder
Autism spectrum disorders (ASD) are a range of neurodevelopmental disorders classified in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-V) (American Psychiatric Association 2013) to encompass autistic disorder, Asperger’s syndrome, childhood disintegrative disorder, and Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) (American Psychiatric Association 2000). The disorders have a life-long expectancy and demand for care and treatment, both from parents and professionals. In most Western cultures, children with ASD attend school during daytime, either regular schools with adaptation or specialized schools. Some individuals also do have structured intervention programs implemented at home. Even if these individuals spend a great amount of time together with professionals, e.g., teachers or other caregivers, parents are spending most time and are thereby considered as the primary caregiver for the individual. The consequences are that parents often experience and bear a great deal of responsibility and care (Volkmar et al. 2014). It should be noted that an ASD diagnosis does not only affect parents but also to a great extent siblings and other close relatives. Lovaas et al. (1973) stated that collaboration between parents and professionals, such as teachers or behavior analysts, is beneficial to the outcome of structured intervention programs. However, this collaboration can be difficult to establish and preserve, often because parents have different prerequisites, and not all parents have financial or nonfinancial resources, which would allow such collaboration.
Parents often start worrying when the child does not make the same milestones as other children, and referral to a specialized clinic is often based upon the concerns parents have when their child shows delay in development of speech and motor skills. Other concerns are often related to stereotypic and/or repetitive behavior (Volkmar et al. 2014). The process of receiving a diagnosis is often a troublesome one, mostly because parents tend to hope that the child will grow out from the delay but also because of long referral time to specialized clinics (Volkmar et al. 2014). Obviously this period can be demanding for parents, due to the amount of concern they encounter and especially due to the waiting time for a clinical assessment.
Each parent of a recently ASD-diagnosed child will experience this period in their own unique way; however there are similarities. Previous studies have shown that parents with a recently diagnosed child have elevated levels of depression and even post-traumatic stress disorder (Dabrowska and Pisula 2010; Casey et al. 2012). Others experience a sorrow process including denial, grief, anger, and acceptance (Lutz et al. 2012), while others have a hard time coping with everyday life which often is experienced as being in “a vacuum,” not knowing what to do. Emotional stress is just one of the consequences parents experience. Mothers, in particular, have an elevated level of emotional stress and depression (Volkmar et al. 2014). One factor that might explain this is that mothers more often take on the role as primary caregiver (Volkmar et al. 2014) and give up their professional career than fathers. There is also a common feeling of disappointment among the parents, not over the child, but over the fact that they are not going to experience all the normal milestones and experiences of a typically developed child (Lutz et al. 2012; Schwartz 2001). As the child grows up and turns into adolescence and young adulthood, a very common concern among parents of individuals with ASD rises, related to the future quality of life of the child if the parents either could not provide the necessary care anymore or if they would pass away (Schwartz 2001; Kalash 2009). The concern is often related to a concern whether or not the child will receive necessary care and support and how this will affect their child’s quality of life.
It is important to address the emotional stress a parent is experiencing when their child is diagnosed with ASD and the related ruminations concerning their child’s future. On the other side, one may not forget the positive sides of being a parent, no matter if your child receives an ASD diagnosis or of another developmental disorder. Parents of children with ASD can also experience a positive effect onto personality and by advocating for their child (Scorgie and Sobsey 2000). Pakenham et al. (2005) described the ASD diagnosis also as exerting a possible positive effect on patience, tolerance, and empathy. From recent studies it emerged that parents of children with ASD also tend to have a great property in caring, sharing, and enjoying the smaller things in life, such as returning a wink or a kiss (Lutz et al. 2012). Many of the parents prefer to speak about their children’s strengths rather than the consequences of the diagnosis, by advocating heavily their personality and interests. Sometimes parents become even motivated by their child to take a degree on the disorder, and some end up as clinicians and researchers. Having a child with an autism spectrum disorder will in most cases involve heavy workloads, little sleep, and concern for both the present and the future. However, it is also important that parents, clinicians, social workers, and other professionals address the positive sides and encourage parents to enjoy the bright spots and the achievements the child is accomplishing. Having a child with autism can definitely imply joy for the parents.
Reactions to Choice of Treatment and Services
Parents often experience the decision-making process around treatment and services for their child as stressful. Often they feel overstrained when facing all the different treatment and intervention options, which make them feeling unsure about which one is the optimal for their child (Ewart 2002). The different services are provided depending on the location (countries, states, counties, and cities). In addition, there are different procedures on how to obtain these services. Most children with ASD in the United States and other developed countries attend schools with professionals where they get familiar with the staff. However, services such as respite services are in many cases not used, because of the emotional stress the child is experiencing when spending time with a less familiar person. Other parents report that the information from service providers often are lacking, giving a feeling of hopelessness (Kalash 2009). Ewart (2002) regarded obtaining school services and rights as difficult. An example from Norway is that many parents are not familiar with the wide range of services they as a family are entitled to, leaving many with negative attitudes toward specialized clinics and state-funded organizations.
Everyday Life Aspects
As mentioned there are often emotional stress-provoking challenges parents of children with ASD are encountering in terms of adaptation, family life, and also stigmatization when in public with their child. It is also time consuming to follow up on what the child might have experienced at school, causing parents to customize their life and that of other family members (Lutz et al. 2012). For many parents, it is a struggle just to go to the store with their child, not necessarily because of the child’s behavior, but more often because of the stigma felt from other adults (Schwartz 2001). Each parent having a child with ASD will remember the different looks people are throwing (Hunt-Jackson 2007). This can be offending and hurtful situation for parents, making them feel embarrassed, pitiful, or even as if they were bad parents. Many parents experience that the more subtle the public reactions are, the more judgmental they are concerning their child’s behavior (Neely-Barnes et al. 2011).
Previous studies indicated that parents of children with ASD had a high rate of divorces. However, more recent studies have shown that despite an increased number of marital conflicts and stress (Benson and Kersh 2011), the divorce rate is much lower than initially found (20 % divorce rate reported by Hartley et al. 2010). Parents often refer to the difficulties of balancing marital needs and the needs of their child. It seems especially hard to combine a marital need with the adjustments and the considerations they have to take concerning their child (Schwartz 2001). Parents also often have problems with maintaining their social network after such a diagnosis (Volkmar et al. 2014). For many it can be rather sore to be around friends with typically developed children, which can cause a marital stress. However, coping with social situations can also strengthen the spousal relationship, which is reflected by many reports about spouses being regarded as the most important support person (Volkmar et al. 2014).
It is clear that parents of children with ASD experience numerous challenges both as individuals and as couples. Many find the immediate time after a diagnosis as both emotionally stressful and a grief process comparable to individuals mourning the loss of a close family member. When parents get familiar with their child’s diagnosis, there are often positive effects to be observed, such as personal growth and becoming supercharged in advocating both their child in particular and in some cases autism spectrum disorders, in general. Spousal relationships have also been studied, without finding an increased risk of separation or divorce compared to parents of typically developed children. Many parents also regard that they find their spouse as their closest supporter, even if there is an increased marital stress in these marriages.
From the different studies referred to in this chapter, it can be concluded that information about treatment and services should be systemized in a better way, to relieve parents from some of the stress they experience during the time of diagnosis and beyond. Support groups for parents are also a very powerful tool for their marriage, and an increased focus on marital difficulties and issues is warranted. In general, there are challenges and consequences of having a child with ASD, which can be difficult to handle for many individuals. The demands parents are experiencing both concerning to sustain a healthy spousal relationship and a well-functioning family situation often require everyday life to be planned and rigorous. It is therefore important that clinicians, social workers, and other professionals manage to provide parents of a recently diagnosed child with information on both the challenges and possibilities arising in the wake of this event.
References and Reading
- American Psychiatric Association (APA). (2000). Diagnostic and statistical manual of mental disorders: Text revision. Washington: American Psychiatric Association.Google Scholar
- Ewart, K. H. (2002). Parents’ experience of having a child with autism. Doctoral dissertation. Available at: ProQuest dissertations and theses. (Order No. 3062724).Google Scholar
- Hunt-Jackson, J. (2007). Finding fathers’ voices: Exploring life experiences of fathers of children with autistic spectrum disorders. Available at: ProQuest Dissertations database.Google Scholar
- Kalash, L. A. (2009). Order no. 3406196, The University of North Dakota. ProQuest dissertations and theses, 113. Available at: http://search.proquest.com/docview/276068082?accountid1⁄414780
- Schwartz, M. (2001). Understanding the well-being of the primary care-takers of autistic children. Available at: ProQuest Dissertations database.Google Scholar