In the public perception, the word autism conjures up an image of a person rocking back and forth, hands flapping in front of eyes that seem to focus in an unknown space a person remote from and disinterested in the social milieu. For many years, professional descriptions, definitions, and common assumptions about people with autism have reinforced that image and named the unusual ways of moving and acting as “behaviors.” Within the professional world that arranges and provides support for people with autism, the word “behavior” often became shorthand for bizarre, bad, repetitive, self-stimulatory, or useless ways of spending time. This paper is going to address the fundamental definition of Autism, Asperger’s in particular, how the family functions, social support, and making meaning of adversity.
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It is important to begin with the fundamental definition of Autism since there are many slang terms in circulation such as retard, idiot, dumb, etc. that are used to describe an Autistic individual. It is important to clarify this. In the 1940s, researchers in the United States began to use the term “autism” to describe children with emotional or social problems. Leo Kanner, a doctor from Johns Hopkins University, used it to describe the withdrawn behavior of several children he studied. At about the same time, Hans Asperger, a scientist in Germany, identified a similar condition that’s now called Asperger’s syndrome. [1] One symptom common to all types of autism is an inability to easily communicate and interact with others. In fact, some people with autism are unable to communicate at all. Others may have difficulty interpreting body language or holding a conversation. Most children with severe autism are diagnosed by age three. Some children with milder forms of autism, such as Asperger’s syndrome, may not be diagnosed until later, when their problems with social interaction cause difficulties at school as well as at home. In the article Accommodation, resistance and transcendence: three narrative of autism by David E. Gray he states that the “effects of one child’s autism on her family, however, went beyond the damage she caused to their home. Her problems also prevented the child’s mother from obtaining employment outsider her home, and, consequently, the family was forced to live modestly on a government pension.” [2] This excerpt from this article shows that autism does have an effect on the family dynamic, in this example a negative one. In fact, the description of autism is too often a teleological exercise with the same symptoms used to both describe and explain it. When one asks why the person displays “autistic symptoms,” one is told that he does it because he “has autism,” or because he does not have a “theory of mind module,” which is why he is autistic, and his autism is why he does what he does. [3]
Autism is a pervasive developmental disorder that has received much attention in the popular press. Until recently how a family deals with autism was never a topic that doctors were concerned with. The autism diagnosis is a very dramatic diagnosis on a family and has a major effect on how they cope and function. Of course there are many stressors which impact families of children with autism which need to be addressed. It is important for families to understand the sources of stress and how to deal with those stressors so they are more readily available mentally and emotionally to help their children. In this research for this paper I have found five categories of stressors which have impacted families and therefore affects the family dynamic. These five stressors can be found in the article Stress and Coping in Autism. Transitional stress is considered the beginning stress. Transitional stressors are defined as those which come during times of change in family dynamics and roles. [4] Transitional issues related to diagnosis, entering school and leaving school may create confusion and conflict in families. Upon diagnosis typical reactions include shock, disbelief, denial and anger. While this diagnosis may confirm something the parents already suspected, in my personal situation it was a relief to finally put a name to something, it doesn’t provide parents with any information about what the diagnosis means for their child’s progress and development. This therefore puts a stress on the family dynamic. The second stressor that I came across in my research is the family functioning stress. This suggests that having a child or family member with autism can positively, negatively or neutrally impact family function. [5] According to this article there are eight main family functions: affection, self-esteem, spirituality, economics, daily care, socialization, recreation and education. [6] Stress can be caused by a family not being able to meet their need in one or more of these areas. The third stressor is emotional stress. Experiencing this first hand, following an autism diagnosis many parents and family members will experience grief feeling states. After the initial feelings of shock, it is said per the Stress and Coping in Autism article that families are expected to go through the natural stages of grief including denial, guilt, depression, anger and anxiety. The authors of the article then state that “it is anticipated that these negative feeling will eventually give way to acceptance of the situation and family reorganization.” [7] It is thought that parents experience the stages of grief upon diagnosis because their dreams and hopes for their child have been altered. In my personal experience this is true and therefore has an effect on the family dynamic. The next stressor or fourth one in this sequence is known as the caregiving stress. The added responsibilities for parents of children with a disability include physical care, medical care, constant monitoring, managing problem behaviors, and other assistance. [8] These additional parenting responsibilities can drain a parent’s time and energy which can cause them to be susceptible to stress and anxiety. The child’s constant dependency on the parent, along with the thought that the dependency may not lesson over time as would be expected with a typically developing child, can add to parental stress. The final and fifth category of stressors is the stress from negative professional and societal attitudes and assumptions. The impact of negative interactions with professionals and other members of society are many times seen as the most potent stressors on families. [9] Society has judgmental and stereotypical attitudes about family actions or lifestyles to the point that some jobs will not hire “one of those” types of people. Society also has displayed negative attitudes or animosity towards parents who strongly advocate for their child. Parents are the voice for their children not only so that they are treated fairly but that they have equal access to a “normal” life and education. These negative attitudes and assumptions from professionals can cause feelings of being criticized, devalued and alienated. Parents can also fall victim to negative attitudes and assumptions from family members, friends, and other members of their social support network. These people may not feel comfortable around individuals with disabilities or they might not know what to day to the parents to console them during difficult times. Usually if someone knows a child with autism they are more understanding than someone who does not. For example I advise a student with autism at my place of employment and I feel I connect with this student due to dealing with the needs of my own child. I feel that I am also an advocate for this student as well. His mother has told me that I am a breath of fresh air to her son because I treat him like a person first and a not his disability first. A child with autism does effect the family dynamic and it is important to surround the family with support and understanding as well as a plan of action to follow.
The family system is an important part of the environment of the child and plays a central role in the developmental outcome of the child as well. Studies of families with a child with autism have traditionally examined this interaction by focusing on the effect parents have on the child, not the child’s effect on the parents. [10] Social support and support strategies are very important to maintain and support the family dynamic. Families that seek out and access personal and professional support services are able to cope with stress better. There are many kinds of support services available to families including parent social support, professional formal support, and respite care. In the article, Family Functioning and Coping Behaviors in Parents of Children with Autism by Matthew J. Altiere, he talks about mothers of children with autism who perceives social support to be accessible report fewer stress related problems and depressed symptoms than do mothers who perceive less social support. [11] Parent social support includes the supports parents receive from friends, relatives, neighbors, coworkers, or others. Many parents access these supports through parent support groups at which they can learn about a variety of topics and talk to other parents about their experiences raising a child with a disability. Parents can feel alone and hopeless. I belong to a social support group called ASGO (Autism Society of Greater Orlando). I too felt alone and this social group welcomed my family with open arms. Even though my husband and I were in various stages of the acceptance process we found others who accepted us. This connection helped give us hope in a time when we felt we were all alone. When a family is able to draw upon adequate resources and if they perceive the situation as manageable then the stress of raising a child with autism may never lead to a crisis. For example, the family gains support through interaction with family members and friends. On the other hand, they may withdraw from, or lack the time for, important social support activities. Thus, families with a child with autism may gradually lose their friends because of their limited availability. Realistically, social support is clearly important for families with a child with autism, although it can be difficult to find the time.
There is also professional formal support which includes those services provided by community agencies and professionals. These supports can also include those services provided by a counselor, psychologist or psychiatrist to guide parents and families in coping with the stressors in their lives. One major support professionals can provide is to teach parents the skills necessary to engage in effective problem solving. Effective and efficient problem solving skills can help alleviate a lot of stress for parents because they can become part of the solution when addressing issues surrounding their children. [12] Respite care is a service typically provided through state funded programs. Many individuals with disabilities qualify for services through these state funded programs and families are allotted a certain number of respite hours a month to be sued when the need them. Respite care is provided to relive parents of the parenting duties for a few hours, a weekend or several days. Best Buddies is one of these organizations. This service can be extremely valuable to families because it allows them the freedom to get away when needed with the peace of mind that their children are in qualified and competent hands. Social support is an important tool to a family with a child who has a disability. This can also assist with the family dynamic alleviating any stressors.
Making meaning of adversity is very important to the family dynamic as well. The Individuals with Disabilities Education Act recognized that parents are their child’s best advocates and the law includes specific rights which serve to empower parents in this advocacy role. These rights include the guarantee of a free appropriate public education, mandatory notification by school personnel for proposed changes to the child’s program, ability to initiate an evaluation at any time, requirement of informed parental consent for evaluations, power to obtain an independent educational evaluation, right to review all educational records, requirement that the school must fully inform parents of their rights, participation in the development of the IEP, requirement that children be educated in the least restrictive environment, and ability to request a due process hearing to resolve differences with the school. Parents are the most natural advocates for their children because they know the child best and because increased parental participation is correlated with increased child success. Additionally, parents are more effective at advocating for their child because they are emotionally invested in their child’s welfare and they are the most constant people in the child’s life. When parents are involved and advocate for the rights and meaningful education of their child amazing things can happen. There are a few key principles for effective advocacy: ask for what you want, be specific and detailed in your requests, stay flexible in finding solutions to concerns, keep requests clear and concise, look at issues from the perspective of others, build and preserve your creditability, never burn any bridges and follow up. If parents are able to do these things when addressing issues with school personnel or other community members/organizations a lot of positive change can and will happen.
Adaptability also is an important part of making meaning out of adversity. Adaptability measures the family’s ability to change in response to a stressful situation. Typically, the modern family believes that the father/husband is the head of the household and does not assist with household responsibilities or childcare. This places a larger burden than normal on the mother, and may result in her having little time for herself or for other members of the family. On the other end of the continuum are chaotic families, which are characterized by unstable and unpredictable change. In chaotic families, the rules may be constantly changing. There may not be a consistent leader and frequent role changes. One cannot dismiss the value of the ability to change with the appearance of sudden stressors, but this family style lacks the constancy needed when caring for a child with autism.
Parents with children with disabilities differ significantly in their rating of the family’s adaptability and cohesion. The mothers rated the families as more adaptable and cohesive. For mothers and fathers, greater parenting stress was associated with poorer family functioning. However, autism affects the family system differently than other childhood disorders. For example, studies that compare the stress in families with a child with autism to families of children with other disorders indicate that the families of children with autism experience more stress, depression, and anxiety. [13] The study in this article allows for the analysis of how autism affects the family system using the constructs of cohesion and adaptability. A goal of this study was to compare the perceptions of mothers and fathers on their coping mechanisms and the functioning of their family. [14] The high level of social support reported by mothers in this sample is encouraging because mothers of children with autism who perceive more social support experience less somatic problems and depressive symptoms. In contrast, many mothers indicated that their social support came from other mothers they met though support groups and related functions.
During the past decade, a number of family researchers have been interested in finding why some families facing adversity manage to function well and come out stronger, while others when faced with a similar situation do not. Resilience has been described as the ability to withstand hardship and rebound from adversity, becoming more strengthened and resourceful. The concept of family resilience and its focus on factors leading to a family’s well-functioning in view of a crisis is part of a movement in positive psychology towards identifying factors of health as opposed to factors of pathology. [15] Family resilience has been looked at either as an interaction of two groups of risk and protective factors. Although family resilience has not been directly studied in the disability field, there is increasing evidence that families of children with disabilities demonstrate a great degree of strength, articulating the positive contributions of disability to their family’s life and well-being. Parents in the study reported stronger marriages, healthy family outcomes and acquisition of gained friendship networks with other families who had children with disabilities. “My son’s autism has made our family life tougher, emotionally and financially. Each member has to devote additional time and effort to help him, and learn how to live peacefully in such environment. Through working together, we all learned how to help my son tougher. In some sense, this also makes our family closer, because an individual cannot handle the toughness alone.” [16] In other situations, working together led to more understanding and, possibly, stronger relationships between the members:
“My marriage is much stronger. We tend to fight less about little things because our focus is on our son. We realize the importance of staying together because our son benefits from both our strengths. We take care of ourselves through diet and exercise and plan evenings and dinners out every Saturday to get through the rough times. We cannot imagine life without our son. We are grateful to have him in our lives.” [17]
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Some families found that autism in one of the children brought the siblings closer together, to the degree that some siblings sacrificed their personal freedom to care for their sibling with autism. For families to be able to work together and utilize their resources well, they must have had two other qualities: being flexible and communicating well with one another. These two qualities are necessary, because family members need to be flexible enough to accept necessary role and responsibility changes as a result of diagnosis of their child with a disability, and need to communicate with each other in order to successfully meet new demands on the family. A great number of families not only perceived them as “close” and untied, but also managed to adjust and function well over time.
Within the last two decades, numerous individuals with autism have shared their unique experiences of living with autism resulting in a plethora of published first-hand accounts. Many professionals are seeking out and listening to these individuals to better understand this complex disorder. Individuals have been able to share their experiences through interviews, personal communication, and published accounts. These accounts come from individuals who can speak or type independently. In almost every first-hand account, individuals with autism report the experience of the stress of living in bodies that often do not work and move the way they want them to, resulting in extreme anxiety in their day-to-day lives.
It is important to understand the family dynamic is impacted with a child who has a disability, in particular autism. Each family must take their own approach in regards to their individual needs in regards to what works for them. They also need to play into the roles of the household, for example if the father is the stay at home parent, he needs to use his role as a father to assist the child with a father attachment. Since the father is the primary care giver until the mother returns home from work, or whatever the situation might be. Each role needs to be embraced and when frustrations arise they need to be dealt with in a productive manner and not lead to unrest or divorce within the house hold.
Honor Code:
“On my honor, I have not given or received, nor witnessed any unauthorized assistance on this work.”
Heidi Soflkiancs-Shugg
Electronically Signed 12/7/2012
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