When a child is diagnosed with Autism, the parents experience a profound loss as they frequently interpret the news to mean that their loved child has a loss of higher order functions and may not develop into a typically functioning child. Deep-seated emotions swell and flood their consciousness with fear and disbelief.
These profound emotional reactions are similar to the grief experienced when a loved one dies. Although grief is a normal yet complex phenomenon, here we describe these emotions mostly in terms of Bowlby’s Attachment Theory, which describes a specific process that considers the reasoning behind grief in response to major losses, and the various factors that impact on the intensity of the response that is experienced.
Bowlby's Attachment Theory
An understanding of attachment furthers our ability to comprehend grief. When parents bring a child into the world, continual attachments to the developing child are formed. According to Bowlby’s Attachment Theory, such attachments develop from needs for security and safety which are acquired through life, and are usually directed towards only a few specific individuals in our lives. Hence the goal of attachment behaviours is to form and maintain loving, affectionate bonds, throughout childhood with the expectation that it will continue as the child develops into adulthood.
Bowlby proposed that grief responses are biologically generated responses to separation and loss. Throughout the course of evolution instinct develops around the premise that attachment losses are retrievable. For example a baby has an expectation that if mum leaves the room, she will come back. if mum is away too long, baby will cry to try and make mum come back, an older toddler may even throw a tantrum or hit mum to let her know that her absence was unacceptable. Similarly, behavioural responses that make up the grieving process are pro-survival mechanisms geared towards restoring the lost bonds.
Dimensions of Grief
The process of grief is multifaceted, whereby the individuals experiencing the loss undergoes major physical, emotional, and cognitive changes. Grief is a state that follows when a person has lost someone or something of personal value, in this case the perceived loss of function of the child. When faced with this loss, the most powerful forms of attachment behaviour are activated in an attempt to reinstate the relationship. The vast repertoire of behaviours can be grouped into four general categories:
- emotional response
- physical sensations
- altered cognitions
Grief, as it applies to parents of a newly diagnosed child, is fundamentally an emotional response to loss, the expression of which can include sadness, sorrow, fatigue, depression, shock, anger, guilt, and anxiety.
Grief behaviours frequently have a similar profile to those found in people suffering from depression, as grief and depression share a number of similar aspects including sleep and appetite disturbances, and intense sadness. These behaviours are usually only evident for a short time in a typical grief reaction, where the loss is a single event such as the death of a loved one. However the loss experienced by parents is evident every day and lasts for a long time. In addition, those experiencing a grief reaction do not always experience the loss of self esteem that is commonly found in most people who are clinically depressed Such reactive depression following a significant loss is not abnormal and usually dissipates over the first following the diagnosis.
Anger is a frequently experienced emotion following a loss and is often confusing for parents. The anger may be directed at each other and may arise from a sense of frustration and helplessness. If the anger is not addressed, complications in the grieving process may arise. There is a risk that the anger will be directed towards others through attributing blame, or turned inwards. SOme mothers mistakenly blame themselves.
Grief not only elicits emotional disturbances, but also physical symptoms such as: tight feelings in the throat and chest, oversensitivity to noise, breathlessness, muscular weakness and lack of energy. These sensations are considered to be a normal component of grief . Usually these are transitory, but on occasions may become of concern to the bereaved and warrant clinical intervention. Occasionally physical health may be seriously impaired, and growing evidence indicates that people who suffer life losses are relatively vulnerable to illness.
Altered cognitive responses
Often new thought patterns occur in the early stages of the child's diagnosis.but usually disappear after a short period. However, persistent maladaptive thoughts may trigger feelings that can lead to depression or anxiety. Disbelief is often the initial cognitive reaction to the news of the diagnosis of Autism, especially if it was unexpected. Although this response is usually transitory, it can persist and become denial, where one or both parents do not accept the diagnosis. Other cognitive responses include feelings of confusion, difficulty organising thoughts and preoccupation with the child's development, which may evoke intrusive thoughts of the child's past and present behaviours.
Although parents may display a number of new behaviours following the diagnosis they generally subside over time. Complications in the grieving process or a depressive disorder may be indicated if the behaviours impede a parent's ability to function. The most commonly reported behaviours include disturbances in sleep, altered appetite (either over-eating or under-eating), absent mindedness, social withdrawal, dreams of the child, and avoidance behaviour in which a parent may go to great lengths to avoid any situations or that reveals to others that the child has been diagnosed with Autism. Additionally, a parent may feel restless and breathless, crying, a response which may relieve emotional stress, although the exact mechanism by which this occurs is not known.
Determinants of Grief
The intensity of emotional responses to the diagnosis vary according to many factors, including the degree of impairment diagnosed, "mild, moderate of severe", whether there is "loss of language", the circumstances of the diagnosis and the availability and utilisation of support networks, and the finances available for treatment. The length and intensity of the emotions experienced by parents or grandparents and other family members varies depending on the nature of the relationship and the degree of attachment. The strength and existence of ambivalence of the relationship has an impact on the intensity of feeling felt. Relationships that include a high degree of ambivalence may lead to extensive feelings of guilt often accompanied by anger.
Adaptation to Loss
Adaptation to the diagnosis is a process, not a state of mind, and as in any process, work is done so that the process can proceed to successful finalisation. There are four tasks to the adaptation process, which may take place in any order.
Task 1 - Accepting the reality of the situation.
This task involves coming face to face with the reality that the child has a neurological disorder which affects various areas of functioning to varying degrees. This is not to say that the symptoms and behaviours cannot be improved or reversed. Often a parent refuses to face the reality of the diagnosis, and may go through a process of not believing, and pretending that the child's behaviours are not really that bad. This denial can take several forms:
- Denying the facts of the behaviours, symptoms and diagnosis. A parent may manifest symptoms that range from slight reality distortions to full blown delusions and cognitive denial.
- Denying the meaning of the behaviours, in an attempt to make the loss less significant than actuality, allowing the meaning of the behaviours to be denied.
- Denying that Autism is in many cases reversible, stops some parents from using all the resources available. "He is not that bad, he does not need all that treatment. He is just a bit slow catching on, I used to be like that"
Task 2: To work through the emotional pain
The process of allowing oneself to feel the pain rather than suppressing the experience is thought to be beneficial to the process of adaptation. In some social contexts the expression of grief may be encouraged, while in others a subtle message may be given that the mourner should stop grieving and get on with life. Hence, the expression of grief may be considered unhealthy and demoralising. People can hinder the adaptation process by avoiding painful thoughts, using thought stopping strategies, or by entertaining only pleasant thoughts of the child, idealising some behaviours, avoiding reminders of the deficits, and using alcohol or drugs to desensitise.
Task 3: To adjust to an environment in which the child with Autism affects the whole family.
Following the diagnosis of autism, parents must take on new roles and adjust to the changed dynamics in their environment. Frequently the full extent of what this involves, and what has been lost, is not realised for some time after the diagnosis occurs. Many resent having to develop new skills and cope with the changed situation. In addition, parents and other family members have to cope with their own sense of self. If attempts to fulfil the new roles as care givers an therapists fail, a reduction in self-esteem can result. Alternatively, parents may promote their own helplessness by not using or developing the skills they need to cope. In response, a parent may withdraw into their own grief and not face the requirements of the situation to help the child.
Task 4: To emotionally relocate and move on with life.
Emotional relocation requires that parents form a new ongoing therapeutic relationship with the child, which can be very different to that which they have with their other children. This is needed in such a way that they are able to continue with their own lives
Counselling for parents
Although most people are able to independently work through the broad range of reactions that follow the diagnosis of their child, some experience difficulty in resolving their feelings and emotions and may seek counselling to help them resolve their pain and clarify their thoughts. Counselling include; (a) helping the person to accept the reality that their child has a disorder; (b) assisting the person to work through the emotions of anger, guilt, anxiety and helplessness that he or she is feeling; and (c) reassuring the person that what he or she is experiencing is normal. The person may also need assistance to face a future in which he or she must perform unexpected roles in which a need to establish new relationships exists. The counsellor should provide support over an extended time period, and prepare the person for adapting to new roles. Each parent of a child with ASD is entitled to 10 counselling sessions a year from Medicare.
Adaptation id the key to survival. In some cases the normal process of adaptation becomes distorted resulting into the intensification of grief to a level such that a parent feels overwhelmed, resorts to maladaptive behaviours, or remains interminably in a state of grief without adapting to th situation and performing their parenting role effectively. An awareness of the different stages of adaptation, and the characteristics of each, allows a counsellor to determine if a behaviour is abnormal in duration.
The normal process of mourning can turn to complicated adaptation for a number of reasons. These may include; (a) difficult circumstances surrounding the diagnosis, such as multiple other losses within a short time period, (b) a person’s history of grieving experiences, (c) the personality of the parent and (d) social factors surrounding the diagnosis such as the availability of social support and finances for treatment. Complicated adaptation can be grouped under four headings: (a) chronic emotional reactions, in which the normal grief reactions continues for an excessive period of time without coming to a satisfactory resolution, (b) delayed reactions in which the emotional reaction occurs some period of time after the diagnosis, (c) exaggerated reactions, in which person is so overwhelmed by the symptoms of and behaviours of the child, that they develop helplessness that may lead to major depressive disorder, and (d) masked grief reactions in which a person experiences physical symptoms that may not at first appear to be related to the loss.
Therapy for Complicated adaptation
The goal of therapy is to identify and facilitate the resolution of difficulties that are preventing the individual from completing the tasks of adaptation to their situation. Certain procedures should be considered for therapy, after ensuring the presenting symptoms are not due to some physical disorder, unrelated to the grief reaction. For example, identifying which of the grief tasks have not been resolved and working through these with the person. If the therapist believes that a previously unresolved loss, may be at the root of the current problems, helping the parent to explore the past relationship may help resolve the current problems.
Adaptation is considered to be complete when the person is able to experience pleasures, take on new roles, look forward to new events, and when thoughts of their child with Autism no longer evoke physical responses of sorrow and pain, although occasional feelings of sadness may be present from time to time.