Many Challenges That Are Involved in the Provision of Services to Children with Autism - Assignment Example

RUNNING HEAD: AUTISM Autism (Your Name) (Your School) AUTISM Introduction The increase in children with autism has grown for the last fifteen years significantly. There are many challenges and stressors that are involved in provision of services and care to children with autism that can affect the educators, family and professionals in health (Trillingsgaard et al., 2005). Autism is a complex disorder which is developmental and can be diagnosed or easily noticed typically between 18-36 months (Coonrod and Stone, 2004). This is one among the five disorders that are referred to as Pervasive Development Disorder (PDD). It has the characteristics of severely impairing various functions such as behavior, socialization and communications. This disorder is not selective and can affect any ethnic, racial and social groups (Siklos and Kerns, 2006). It is essential to study the effects that are brought about by autism in the families since it has become highly prevalent as it has been recently estimated to approximately affect between 10-12 people in every 1000 individuals. There was an increase of about 237% of cases reported in California as from 1987 and 1998 according to a report that was documented by California department of developmental ser vices (DDS) (Luther et al., 2005). The number of people with autism that is full syndrome who were served by DDS in California as from 19998 to 2002 had increased drastically from 10,360 to 20,377. It has been established by Gevirtz graduate school which is in the University of California that the number of Americans diagnosed with autism has hit a high of 1.5 million and there is a 10-15 percent increase of autism incidents annually (Luther et al., 2005). Autism is taking the place of one of the developmental disability that is growing fast in terms of diagnosis and it is estimated to cost $90 billion annually in America (Coonrod and Stone, 2004). Not only does autism strain the educational resources but it takes a toll which is too tremendous on the families involved. An autism centre in UCSB found out that parents whose children have autism face a challenge in getting professionals who can take good care of their children (Luther et al., 2005). The high prevalence of autism, lack of professionals to take care of children with autism and the stress that the families with individuals with autism suffer made it necessary for a lot of research to be undertaken on autism. This made it necessary for the interview to be based on this disorder. Sample Interview The interview took place at Jenny’s place in the presence of her mother and two children. It took place when Julian was in school and her mother was around to baby sit the rest of the children. Jenny is 34 years and her husband John is 36 years and they are both Australians. They both socialize within the same ethnic group and this is quite helpful. Jenny is very health conscious and often visits the doctor for regular health check ups. They have three children Julian, Blake and Aiden aged 7, 4 and 2 years respectively. Julian who has autism is the one am interested in as I intend to find out the psychological impact autism has on a family. Julian’s hyperactivity does not auger well with his asthma since he is rendered breathless at times. Julian has no social skills thus he can barely communicate. This has made it difficult to be at ease in crowded places so Jenny avoids taking him to such places e.g. parties. This puts a lot of pressure on Jenny although her husband is very supportive and helps in taking care of the children. Jenny’s mother, who is a registered division one nurse, is very resourceful and usually helps Jenny with any emotional or medical issues. However, Jenny finds it difficult to seek for professional help when she is stressed out. Jenny has a very closely knit family, since she talks to her mother at least twice in a day. Jenny also talks to her younger sister and brother at least three times in a week. There are some professional agencies that Jenny’s family is involved with these are Centrelink, Red cross, local council, local general practitioner, health nurse, RMIT autistic association, pediatrician and a respiratory specialist. Jenny has stuck with these health agencies since Julian was diagnosed with autism. Although Jenny’s family has broadly gained knowledge on autism through the years due to constantly updates, she stills feels inadequate to deal with Julian’s ever changing behaviors. It is becoming impossible to take Julian to crowded environments e.g. shopping centers since this increases his erratic behavior and makes him uncontrollable. It is also hard for Julian to travel for long distances and he has his own case worker. The family is going through financial hardships since Jenny quit work to look after Julian. The family has moved for 8 times within the last five years and recently, they lost their home in the bush fires which was very traumatizing. This forced them to move around a lot and Julian, who finds it hard to adapt to change, was uncontrollable, forcing them to increase his medication. The lack of finances has limited the health services Jenny can access for Julian and this really stresses her. Although Jenny is supported by John who is called from work at times, she still feels anxious, helpless and inadequate, frustrated, blames herself and depressed. Jenny cannot socialize as she pleases and the family avoids crowded places thus they cannot go to the movies, eat out or travel. The couple’s intimacy has been reduced and Jenny is embarrassed by Julian’s behavior in public. This has given her a low self esteem and she rarely has time to spend on herself. Themes of autism According to Werner (2001) when a child within a family is diagnosed with autism their lives change (Luther et al., 2005). He discovered this after conducting a phenomenological study where he conducted in-depth interviews and was able to isolate some themes these included: (1) The life of the family revolved around dealing with the unusual behaviors elicited by a child with autism (Luther et al., 2005). This theme corresponds with the data that was gathered during the interview. We see that the family only engages in activities that Julian is comfortable with. Jenny cannot go out to crowded places as she pleases due to the lack of social skills and communication skills that are exhibited by Julian. From the interview, we learn that her husband can get called back from work to come and help in taking care of the children since Jenny constantly needs help in taking care of them. Jenny’s mother also helps in taking care of the other kids since Jenny is always occupied caring for Julian. Julian’s father also assists in household chores and taking care of the kids to give Jenny a break from Julian. (2) The parents feel lost because their children have no chance of leading just a normal life. Although Jenny has managed to keep herself updated with all the information she can get from autism over years, we still see her being unable to cope with Julian’s ever changing behavior. There is a time that Jenny confesses that despite the moral support from the family she feels frustrated and anxious due to Julian’s autism (Siklos and Kerns, 2006). She also feels helpless due to relying on other people and sometimes she just feels like a failure. We see Jenny confessing that she blames herself for Julian autism and sometimes feels resentful towards him. This theme is clearly brought out during the interview as Jenny feels so lost in taking care of Julian (3) A family whose child has autism can only feel like a family for a fleeting moment. This is clearly brought out during the interview since Jenny confesses that a lot of intimacy has been lost between her and the husband as a result of taking care of Julian and other kids. Jenny confesses that the family has very limited time for engaging in social outings since they have to take care of the kids as Julian needs intensive care. Since Jenny is very embarrassed to take Julian out in places of social gatherings, this has limited the activities of the family since they can’t travel, dine out or go out to the movies (Gray, 2002). These are some of the activities that bring families together and make them feel close to each other. We see Jenny confessing that they have moved eight times in five years as they were looking for a neighborhood that Julian will be more comfortable with (Gray, 2002). We also see the family being traumatized by loosing their home to the bush fire since they know it will be hard to find another place where Julian will be more comfortable. (4) According to Dodson and Middleton (2003) another factor that stresses the family is the financial stress that comes along in taking care of children with autism. They approximated that the cost of taking care of a child who is disabled is three times higher than the cost of taking care of a normal child (Luther et al., 2005). The scale of cost measuring was derived from difficulties that can arise from maintaining employment, lost opportunities to engage in leisure activities, lack of available time in taking acre of other children and difficulties that arise from the being unable to pay for adequate health care for the child with autism. This is true since from the interview we are able to see that Jenny had to quit her job to helping taking care of Julian. Jenny confesses that they are struggling financially and this has made it impossible for Julian to access health care in times of emergencies. Jenny says that she feels helpless as a result of not having money to take care of Julian. It is also quite evident that Jenny’s mother is always chipping in financially to support her family and this makes Jenny embarrassed to borrow money from her. John is constantly being pressurized to attend work since the family depends on the single income that he brings in. He would perhaps be more willing to render his help to Jenny who is burdened by taking care of Julian, but he has to go to work to satisfy the needs of the family and especially money needed to take care of Julian. Jenny reveals that she can no longer pursue her career since she spends most of the time taking care of Julian and this denies her time for self gratification. She cannot afford to go out as she please since she is embarrassed by Julian’s erratic behavior or she has no time to do so. Jenny spends most of her time taking care of Julian and she has no time for herself, other kids and her husband. (5) According to many research studies conducted over years, it has been shown that the behavioral problems associated with children with autism such as uncontrollable behavior and mood swings can greatly affect a parent. According to Kapin (1997) these behaviors are challenging to any parent and are likely to be very stressful (Luther et al., 2005). The level of stress associated with bringing up a child with autism are higher than those of bringing up a child who chronically ill. The stress that is brought about by raising a child with such a serious disability is a precipitating factor for parental depression (Hastings and Johnson, 2001). This is more pronounced in the mothers who are deeply involved in taking care of the children. Families are advised to seek professional help to deal with the stress and a lot of moral support is also needed to help the parents to cope (Hastings and Johnson, 2001). From the interview, we see that Jenny is normally stressed out as a result of taking care of Julian. She says that she doesn’t seek for professional help when she feels stressed which is wrong. We see her confessing that despite the moral support she gets from her family, she still feels frustrated, anxious, and helpless, feels like a failure and blames herself for Julian’s condition. All these signs that she is exhibiting are as a result of being depressed. She says at times she feels so depressed by Julian’s behavior since one can’t enjoy any of his achievements without something going wrong. Jenny’s inability to go out to any social places due to the embarrassment brought about by Julian’s behavior can be very depressing as she feels her life is limited (Luther et al., 2005). 6. Consistent researches have proved that autistic symptomatology is one of the primary sources for stress (Hastings and Johnson, 2001). Most of the autistic children behaviors are erratic and uncontrollable something that will embarrass any parent in the presence of people. Some people will pity the parent while some will view them as a total failure in disciplining the child since they do not understand the disorder. Parents whose children are autistic find it hard to take them out to play with other kids since their behavior is likely to scare away the rest of the children. This is true since Jenny confesses that Julian’s behavior is uncontrollable and no matter how much knowledge she gathers on dealing with it, she still feels helpless. She also confesses that his intolerable behavior in public makes her to suffer from embarrassment and that’s why she avoids crowded places. The family has also avoided activities where they are likely to mingle with other people since Julian’s behavior causes them a lot of distress. When they moved into a new neighborhood, she had to increase Julian’s medication since he was way out of control something that was stressing the whole family. 7. Coping resources- According to Beresford (1994) the resources within a family will affect the level of stress that they will experience. The coping resources, refers to the strategies adopted by the family and individuals in coping with autism. They also include social support which is given by professional and informal supports from friends and family (Hastings and Johnson, 2001). The kind of support that one gets from the above will be a major factor of moderating stress. Jenny confesses that her husband is very supportive and helps her in household chores and taking care of the children. Her close relationship with the mum has ensured that she gets a lot of medical and emotional support which has enabled her to cope better with Julian’s condition. Jenny is also close to her siblings whom she talks to constantly and this improves her coping ability. There are times that john is called from work to come and help in taking care of the children. The professional agencies that Jenny has been engaged with are also so helpful since she gets a lot of support and help from them. It is through these agencies that Jenny and the family has gained a lot of knowledge from on how to deal with Julian’s autism. From these agencies, the family can constantly get all the updates that are needed in dealing with autism. Nursing plan Jenny and John need help to deal with Julian’s autism that has brought a lot of stress in their lives. The school nurse can meet with the parents and help them to understand the changes Julian behavior is likely to undergo during his development. Since communication ability of Julian is quite low, it is futile to try attracting his attention through verbal communication. The reason why children with autism avoid social interactions is because they hold no meaning to them. Visual picture and symbols have been known to enable these children to communicate better and the parents can place them on a board to help them in communication (Cade and Tidwell, 2001). This should be done slowly to refrain from confusing the child further and making them less tolerable. The uncontrollable behavior that is elicited by the child is as a result of frustration of not being able to communicate. Due to the lack of communication, the child might be intolerable due to hunger or thirst. The parents should observe a schedule of toileting, feeding and drinking for the child to stem down this behavior. The school nurse can also advice Jenny’s family on the best medication to give to Julian as he grows to make him more tolerant. It is known that the dosages of medication have to be constantly altered to make them more effective. Through the nurse, the family can get all the recent valuable information that they need about autism. The nurse can advice any of the parent faced with stress to seek professional help (Cade and Tidwell, 2001). Conclusion It is quite evident from both the literature and the interview that autism can have a lot of psychological stress for the family involved in taking care of the child who has it. Autism can cause parents to give up their careers to take care of the sick child and they dedicate most of their time doing this. This disorder can make the family to refrain from engaging in activities that help them bond due to lack of time or the embarrassment that is brought about by the child during social gatherings. The family will have to limit its activities to those that suit the child’s behavior although they might not enjoy them. It is likely that the parents will be stressed out due to the financial burden associated with taking care of the child and all the individual sacrifices made. A lot of moral support is needed by the family and it is advisable for parents to seek for professional help to avoid development of depression. References: Cade, M. & Tidwell, S. (2001). Autism and the school nurse: Journal of School Health. Blackwell publishers, Vol. 71 (3) pp 96-100 Coonrod, E & Stone, W. (2004). Early concerns of parents of children with autistic and non autistic behavior: Journal of Infants and Young Children. Lippincott Williams & Wilkins Inc, Vol. 17 (3) pp 258-268 Gray, D. (2002). Felt and enacted stigma among parents of children with high functioning autism: Journal of Sociology of Health and Illness, University of New England, Vol.24 (6) pp 734-749 Hastings, R. & Johnson, E. (2001). Stress in UK Families Conducting Intensive Home-Based Behavioral Intervention for Their Young Child with Autism: Journal Of Autism And Developmental Disorder. Plenum publishing company, Vol. 31(3) pp 327- 336 Luther, E. et al. (2005). Coping and social support for parents of children with autism: Journal of School Nursing. Blackwell publishers, Vol. 21(1) pp 40-47 Siklos, S. & Kerns, K. (2006). Assessing the need for social support in parents of children with autism and Down syndrome: Journal of Autism Development and Discord. Springer science, Vol. 36 pp 921-933 Trillingsgaard, A. et al. (2005). What distinguishes autism spectrum disorders from other developmental disorders before the age of four years: Journal of European Child and Adolescent Psychiatry. University Hospital of Aarhus, Vol. 14 (2) pp 65-72 Appendices Interview Me: Good afternoon Jenny, how are you doing? Jenny: Afternoon to you am fine please have a seat. Me: Please tell me about your children Jenny: Well I have three children, Julian, Blake and Aiden aged 7, 4 and 2 years respectively. Julian was however diagnosed with autism around three years ago. Me: Tell me more about his autism. Jenny: Apart from autism, he also has asthma which normally renders him breathless sometimes due to being hyper active as a result of autism. The medication that he takes is not helping much. The autism has made Julian to possess no social or communication skills. Me: Sorry about this, but how does Julian’s condition affect you and your family? Jenny: Well, Julian put a lot of pressure on me since he has some difficulties in visiting places that are crowded e.g. parties. My husband is very supportive and assists in house hold duties and taking care of the children. This normally gives me a break from taking care of Julian. I also get a lot of support from my mother whenever I have any emotional and medical issues. Me: That’s good to hear, what does your mother do? Jenny: She is a registered division one nurse. Me: Well that’s good. Do you normally seek professional help when you are stressed out? Jenny; No I don’t. Though, I speak to my mother often and am also quite close to my brother and sister who call me thrice in a week. Me: You are very lucky to have such a supportive family. What professional agencies is your family involved with? Jenny: There are several of them such as Red Cross, Centre link, local council, local general practitioner, health nurse, pediatrician, and respirator specialist and RMIT autistic society. I have not moved from any of these health agencies. We have gained a lot of knowledge on Julian’s condition over the years and we keep on updating this information as much as possible. However, Julian’s behavior seems to be so erratic thus it is quite hard to cope with him. Me: Please explain to me further Jenny: Well you see, I can no longer take him to crowded environments such as shopping centers since his behavior becomes more erratic and this makes him uncontrollable. I also find it very challenging to travel with him for long distances. Although Julian has a case worker assigned to him, I still feel the need for more help. Me: Sorry, but how do you cope financially? Jenny: You see we are a bit tight on cash since I quit work to look after Julian and so we depend on one income. We have moved for a least 8 times over the last five years and recently we lost our home to the bush fire, which was very traumatizing. Me: Have you found an appropriate place you can call home? Jenny: Yes although this change of scenario made it difficult for Julian to adapt and we had to increase his medication. Me: How did this affect your family? Jenny: The lack of finances really stresses the family since Julian can’t get the medical attention he needs. I feel so helpless since I cannot easily access the appropriate help in times of emergency. I also can’t always borrow money from my mum who is always supporting me financially. Me: Is your husbands work affected by Julian’s conditions? Jenny: Well, he is constantly under pressure to go to work since we depend solely on his income. Also sometimes I have to call him from work when I need help. Me: How has this disorder affected you family’s social life? Jenny: We have limited social outings since I have to take intensive care of Julian. My socialization is limited since most people cant stand Julian’s behavior and I cant pursue my career as I spend most of the times taking care of him. This reduces my self gratification time and as a result I have developed a very low self esteem. As a couple, we no longer have the strong intimate relationship we had before. I feel completely embarrassed to take Julian out to any social gathering and this has restricted the family’s activities of traveling, dining out and going to the movies. Me: I thought you had a lot of moral support from your family. Jenny: Even though, I still feel helpless, frustrated and anxious. I also feel like am always relying on other people for help, like I am a failure and totally blame my self for his condition. Sometimes I feel resentment towards Julian as he is always competing for attention with my other kids. Sometimes I feel very depressed as you can barely enjoy any of his achievements without something going wrong. Me: Thank you very much for your time and for the insight you have provided to me on autism and the psychological issues related to it. I wish you good luck and I think you are doing a superb job in taking care of Julian Read More