Group 42

The Impact of Special Needs on Family Members


Letter to the Author

Dear Genevieve,

This website outlines our research into the effects that a child with a disability has on their family. More specifically we focus on children having a sibling with either Autism or Down syndrome.
The brief definitions of both Down syndrome and Autism are provided below. We examined both physical characteristics as well as the effects on mental development. Should you require greater detail links can be found to various associations’ websites.
We conducted detailed research into the effects that both disabilities have on the families as a whole and on siblings and parents separately. Our research uncovered consistent findings with regards to the effects and difficulties faced by families. Some of the articles point to strategies and coping mechanisms that are available for families.
The information we have gathered covers a wide range of data, expanding beyond North America and beyond journal articles. We attempted to tackle the issues from multiple perspectives, because it is a dynamic issue and everyone who encounters it deals with it differently.
Having a family member diagnosed with a disability can be a devastating experience. The subsequent years of special care and attention; financial demands; limitations of activates can lead to stress, pressure and depression within the family unit.
Coping with such a burden can be difficult, but we have also found that experience goes beyond creating difficulties. Many families are brought closer by their experiences. Children can learn greater compassion, insight and responsibility. While many parents claim that raising a special needs child is the most rewarding experience of their lives.
The research indicates that while it is difficult to deal with these scenarios, something can be positive can be derived from them. Given the right tools, encouragement and support families can and do thrive under these trying conditions.
We hope to share what we have learned. That having a family member with a disability is not a burden, but as a challenge uniting a family, making each part stronger.
Please see our findings below

All the best,
Katherine, Sarah, Nikki, Ladislav, Irene


Definitions

  • Special Needs: the educational requirements of pupils or students suffering from any of a wide range of physical disabilities, medical conditions, intellectual difficulties, or emotional problems, including deafness, blindness, dyslexia, learning difficulties, and behavioural problems
  • Autism Spectrum Disorder (ASD): any of various disorders, as autism and Asperger syndrome, commonly manifesting in early childhood and characterized by impaired social or communication skills, repetitive behaviors, or a restricted range of interests.
  • Down Syndrome: a genetic disorder, associated with the presence of an extra chromosome 21, characterized by mild to severe mental impairment, weak muscle tone, shorter stature, and a flattened facial profile.
  • Chromosome: any of several threadlike bodies, consisting of chromatin, that carry the genes in a linear order: the human species has 23 pairs, designated 1 to 22 in order of decreasing size and X and Y for the female and male sex chromosomes respectively.
  • Broad Autism Phenotype: a fancy way of talking about a non-autistic person related to an autistic person, who shows some characteristics of having autism themselves.

What is Special Needs?

Special Needs refers to a large spectrum of disabilities in people. Someone is said to have special needs when they require additional aid in education, medical or environment. The two that we are focusing on, Down syndrome and Autism are generally diagnosed before birth or in early childhood.

What is Autism?

Autism speaks inc. (2014). What is Autism? What is Autism Spectrum Disorder?. Retrieved from: http://www.autismspeaks.org/what-autism

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Autism and Autism Spectrum Disorder (ASD) are common terms used for a group of complex disorders related to brain development. Difficulties in nonverbal and verbal communication, repetitive behaviour, and social interaction are some of the characteristic of someone with autism. Some of these difficulties can be more prominent in certain individuals and others may appear relatively normal. Autism or ASD can be associated with any difficulties in movement coordination, attention span, any physical issues like sleep, and intellectual disability. Many say autism is imbedded in a child already in early brain development but the more noticeable signs of a child having autism are seen between the ages of 2 and 3. The earlier autism is diagnosed the better, as different therapies can help a great deal at a young age to help the individual overcome the challenges and live a better life.

This is a short 3 minute video explaining how the brain of someone with autism works: http://www.youtube.com/watch?feature=player_embedded&v=s8umwjLi0F8

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What is Down Syndrome?

Davis. P.C (2013) Down Syndrome Overview. Retrieved from http://www.medicinenet.com/down_syndrome_overview

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Down Syndrome is a set of physical and mental traits caused by a gene problem that happens before birth. Children who have Down syndrome tend to have certain features such as a flat face, and a short neck. Down Syndrome is a lifelong condition. An issue with the baby’s chromosomes causes Down syndrome. Normally a person has 46 chromosomes, however people with Down syndrome have 47 chromosomes, having this extra chromosome changes the way the brain and body develop. There is really no exact cause to having Down Syndrome, however there are risk factors that may increase your chance of having a child with Down Syndrome; If you are older than 35 and pregnant, if you had a previous son/daughter born with Down Syndrome, or a family member has Down syndrome. Providing support and treatment for a patient with Down syndrome is meant to improve their quality of life. Team Approach, Physical therapy, Occupational Therapy, Speech Therapy may help to improve language, motor and social skills. People with Down syndrome who have Medical Conditions that affect their hearts or gastrointestinal system may require surgery.


The History of Special Needs

Harbour, C.K.,& Maulik P.K. (international encyclopedia of rehabilitation). (2010). History of Intellectual Disability. Retrived from: http://cirrie.buffalo.edu/encyclopedia/en/article/143/

The history of disabilities dates back to Egyptian time in 1552 B.C. Where this is the earliest history recorded. It was said that God was angered when a child had a disability; this was said by the romans in ancient Greeks. Many times children with severe mental disability where just left to die instead of grow up. Although there was an acceptation to this where, if the child were born into a wealthy family the Romans allowed them to grow up with a guardian. People with mild mental disability where not given special treatment if they were socially competent and those that had more severe effects were give protective care from their families. Ancient Hindu and Punjabi have written in scriptures how they thought mental disorders were thought as witchcraft and supernatural agents. It was suggested that people would have a mental disability if they disrespected parents, teachers and God or inappropriate dieting and faulty bodily activity. Some remedies they used to try and cure these disabilities included the use of herbs, prayers, emotional and moral persuasion, and shocking the person.

The History of Down Syndrome

News Medical. (2001). Down Syndrome History. Retrieved from: http://www.news-medical.net/health/Down-Syndrome-History.aspx
Down syndrome was first characterized as a mental disability in 1862 by a doctor name John Langdon Down. He based his findings on the physical similarities of their faces. Their faces also resembled those of the Mongolian race, resulting in the disability being largely tied to racism up until the 1970’s. Down syndrome then became the most recognizable form of a mental disability. They initially institutionalized children with Down syndrome, and most died in infancy or early adult life. Forced sterilization become common in several countries with the rise of the eugenics movement. There were many theories about the causes of Down syndrome, but it wasn’t until 1959 that they discovered it was the result of an extra chromosome. It was around this time that the tie of the Mongolian race and Down syndrome were broken for its misleading interpretation.

The History of Autism

The New England Journal of Medicine. (2013). Autism History. Retrieved from: http://www.autismspeaks.org/science/science-news/autism-70-%E2%80%93-kanner-dsm-5
Autism was at first diagnosed as a form of schizophrenia.
In the 1970’s it was associated with a retardation of brain development. It wasn’t until 1980’s that autism was distinguished from schizophrenia and in 1987 a checklist for diagnosing autism was created. Between 1994 and 2000, the definition of autism was updated to include Asperger syndrome. Most recently in 2013 the term autism spectrum disorder (ASD) became popular. The effects of autism include difficulties in communication and social interaction as well as repetitive behaviours. To date no single cause of autism has been discovered, and there is continued debate regarding this issue.


What is currently being done to help people with Special Needs

Down Syndrome

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Financial Help
Ontario Disability Support Program (ODSP)
- Helps people with disabilities who are in financial need to pay for living expenses, like food and housing. The program helps financially and helps to find a job.

The Assistance for Children with Severe Disabilities Program
-Helps parents with some of the extra costs for caring for a child who has a serve disability. The child must be under the age of 18, lives at home and has a serve disability.

Organizations that help
The Down Syndrome Association of Ontario (DSAO)
- Is a charitable, non-profit organization that helps with the people of Ontario with Down syndrome and their families.

Canadian Down Syndrome Society (CDSS)
-Is a national non-profit organization that provides information, advocacy and education about Down syndrome. They support self-advocated, parents and families through all stages of their child’s life.

Down Syndrome Association of Toronto (DSAT)
-Is a parent organized and led Canadian Charity which works to achieve the goals of maximizing individuals potentials with Down syndrome in the community.

Awareness day’s
-March 21st, is Down syndrome Day. It is a day where people who have Down syndrome or live and work with them throughout the world organize and participate in activities to create awareness.

Therapy
1. Physical Therapy
-Includes activities and exercises to help build motor skills, increase muscle strength and improve posture and balance.
2. Speech-Language Therapy
- Can help children with Down syndrome to improve their communication skills and use language more effectively.

3. Occupation Therapy
- It helps to find ways to adjust everyday tasks and conditions to match a persons needs and abilities.

4. Emotional and Behavioral Therapy
- Helps to find useful responses to both desirable and undesirable behaviors. These types of therapist try to understand why a child is acting out, create ways and strategies for avoiding or preventing these situations from occurring and teach better or more positive ways to respond to the situation.

Medications
-Drug therapy is not a common component for treating people with Down syndrome. Most medications that are used are used to cure pain. People with Down syndrome have heart defects, thyroid, muscle, joint, vision and hearing problems. Appropriate medication will be taken depending on their severity.

Autism

Financial Help
(Same as Down Syndrome)

Organizations that Help
1. Autism Parent Resource kit
-A resource for families to better understand autism and the range of services and supports available in Ontario. Families and caregivers of children and youth with Autism that were talked amongst to approached the content of this resource kit.

2. Autism Canada Foundation
- A national, volunteer led organization, providing treatment and resource information to families living with autism, and influencing related gealth care and government policy. Free resources are provided.

3. Erin Oak Kids Autism Resources
- A wide range of resources with information and practical strategies to support families and can be used at home and in the community.

4. KidsAbility List of Autism Services
-This sends you to the information on services put together by KidsAbility Autism services.

Awareness Days
April is Autism Awareness Day
-Takes place on April 2, every year. It helps to spread awareness to people about Autism and educated those who do not know anything about it through various activities. It also celebrates the unique talents and skills of people with autism and it is a day to make them feel welcomed into society and that they are not alone. Autism is one of only three health issues to be recognized by the United Nations with its own day.

Light it up Blue Campaign
-It is a global initiative that starts up Autism Awareness Month and helps raise awareness about autism. Many iconic landmarks, hotels, sporting venues, concert halls, museums, bridges and retail stores light up blue.

Therapy
-the goal for therapy (treatment) is to improve the overall ability of the child to function.
1. Applied Behavioral Analysis (ABA)
-To help understand the improvement of the behavior ABA treatment improves behaviors socially. It helps to teach social, motor and verbal behaviors.
2. Treatment and Education of Autistic and Related Communication Handicapped Children (TEACCH)
-It is a special education system used by public school systems and preschools. It is based on a respect for “the culture of autism.”
3. Speech Therapy
4. Occupational Therapy /Physical Therapy
-can help improve any delays in coordination and motor skills
-occupational therapy may also help the child to learn how to process information from their senses.

Medications
1. Anti-Depressants
-Helps with depression

2. Antipsychotic
-Helps to decrease problem behaviors such as tantrums, aggression, and self-harming


Down Syndrome

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Cuskelly M, Chant D & Hayes D. (1998). Behaviour problems in the siblings of children with Down syndrome: Association with family responsibilities and parental stress. International Journal of Disability, Development and Education, 45 (3), 295-311.

This article outlines a study to compare the affect of having a child with Down syndrome compared to a family without a disability. The study was made up of 45 families with a child with Down syndrome raging from the aged of four to fifteen, and 88 families without a child with Down syndrome. The parents were asked various questions to study their stress levels, their children’s behavior and their children’s ability to perform household tasks. There was no difference between the siblings of a child with Down syndrome and siblings without a child with a disability in terms of behavioral problems. The brothers of the children with Down syndrome showed an increase in problems to perform household tasks. The parents of the child with Down syndrome also had an increase in compared to the parents of children without a disability. The stress level was measured on the Parenting Stress Index.
I believe this article will aid in your understanding of the specific problems the siblings of a child with Down syndrome face, and the aspects of their life that are no different from others.

Families of Children With Down Syndrome

Cunningham.C.C. (1996). Families with children of Down Syndrome. Down syndrome research and practice (4). Retrieved from http://www.down-syndrome.org/perspectives/66/perspectives-66.pdf

This entry was a study that was done on families who has a child with Down syndrome and how they are in there adulthood today, to see if there was an impact on them and their families and how their relationships were throughout the process. The paper focuses on the effects of having a child with Down syndrome in the family; how the child is affected by the way they function as a system. Also focuses on the factors that put them at risk and what factors provide a potential stressor. It goes into more depth about how the factors positively or negatively influence the development and well being of the child. C.C.Cunningham uses the research results from his own experience, The Manchester Down Syndrome Cohort Study which was started in 1973. He was able to follow over 100 families over the years, where his colleagues than completed a project which investigated the same children in their teenage years and now revisiting them in adulthood. The entry states that factors that influence the well being of all members are the same as those influencing any child or family. Majority of families do not exhibit pathology of having a child with Down syndrome. The results emphasize the diversity of families and of individuals with Down syndrome, some families and children with Down syndrome are vulnerable and are at risk.

Specific Worries in Siblings of Children with Down Syndrome

Holsen. M. L, "Specific Worries in Siblings of Children with Down Syndrome" (1999). Honors Projects. Paper 82. Retrieved from http://digitalcommons.iwu.edu/psych_honproj/82

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This entry focused on contrasting the specific worries of children with Down syndrome and their sibling and with the experiences of siblings of typically developing. They wanted to know whether having a sibling with special needs has positive or negative effects on child development. Having a sibling with a disability can be both positive and negative, positive in the sense that it will help increase awareness, acceptance of the person, heightened academic performance and altruism. The negative side includes a sense of it being an extra stressor within the family; added responsibilities, decreased parental attention, and the child’s behavior problems may affect each member negatively. Within this entry the author focuses on three main sections; possible effects on growing up with a sibling with Down syndrome from social, emotional, functioning of siblings, child responsibilities, parent expectations and the difference in sibling interaction patterns perspectives. Also, the documented effects that may be dependent on intervening variables such as; the child’s ordinal position and gender and lastly the specific worries of these siblings; Self worries, sibling worries, family worries and social worries. With growing up with a sibling that has Down syndrome it can affect the sibling tremendously. On the social and emotional level it can be both positive and negative, adult siblings reported higher levels of subjective burden defined as a level of perceived feelings of stress pressure and burden as function of their part in taking care of their siblings with special needs. With sibling responsibilities and parental expectations it was reported that siblings of children with a disability appear to have increased responsibilities and parental expectations in both school and home environments such as; household chores and caregiving tasks. Even though most reports focused on the negative outcomes there has been positive effects that has been discovered; reported by mothers, siblings of a disabled appeared to be supportive and more accepting of their siblings. Whether the child without the disability is supportive and accepting is does affect their sibling interaction, because if you have a negative outlook on the disability the interaction with the sibling will not be a healthy and fun one, where on the other hand if the sibling accepts his/her sibling as having a disability their interactions would be much closer and loving. Knott Lewis & Williams (1995) found that dyads that include a child with autism interacted less than Down syndrome dyads. The finial effect that may be dependent on intervening variables were the child’s ordinal position and gender, McHale and Gamble (1989) found a correlation between anxiety and age, the older the sibling, the more anxiety their experienced, female siblings receive the most direct effect due to increased time spent caregiving and doing households chores. With increased responsibilities and a lower level of parental resources siblings of children with developmental disabilities may experience worries within their selves and within the family dynamic. There are four different worries that are specific to having a person who has Down syndrome in the family. Self worries which is the anxiety about the child own well being. They feel this way because of the lack of information about Down syndrome. Bagenholm and Gillberg (1991) reported that 67% of the children ages 5-20 whose siblings have mental retardation could not explain what was different about a or wrong with their sibling. Sibling worries, the sibling in this case worries about the future of the sibling with Down syndrome, young children may feel as if they will not be able to communicate with their sibling as people with Down syndrome have speech problems and some fail to speak at all. Family worries, normally developing children may receive less parental attention and fear that the parent may focus their attention on the disability child then them. Lastly social worries, where the child is exposed to the outside world whether it be school or just walking around, the child may feel embarrassed around the sibling with Down syndrome or they feel as if their peer will not accept them. Living with a child with Down syndrome is a struggle and some people do not realize that it does not only affect the parents but it also affects their siblings. A study was completed to assess these worries in children whose siblings have Down syndrome. The method that was used was 24 children ages 7 and 14 and one of their parents. Participants were recruited though flyers and letters and distributed to local Down syndrome support groups, local schools and YMCA. The outcome of this study resulted in four sections, first siblings of children with Down syndrome did not exhibit significant elevated problems in general psychosocial functioning, second by child- report, siblings of children with Down syndrome did not differ significantly from siblings of typically developing children in terms of sibling worries, third, by parent-report, siblings with children with Down syndrome had more worries than siblings of typically developing children and lastly the fourth result was that parent of children with Down syndrome overestimated the number of child worries, which parents of typically developing children underreported their child’s worries.

Socio-Economic Advantages and Disadvantages

Mulroy, S., Robertson, L., Aiberti, K., Leonard, H. and Bower, C. (2008), The impact of having a sibling with an intellectual disability: parental perspectives in two disorders. Journal of Intellectual Disability Research, 52: 216–229. doi: 10.1111/j.1365-2788.2007.01005.x

This entry focuses on a study that describes the impact of having a sibling with Down syndrome or Rett syndrome using a questionnaire. Parents of 186 Western Australian children with Down syndrome and 141 Australian girls and women with Rett syndrome participated in the study. Pattern of reporting disadvantages and/or benefits were compared across a number of child and family variables such as age, functional ability, birth order of the affected child, number of siblings and a number of parents in the family home and by socio-economic status. Parents’ responses to open-ended questions about the benefits and the disadvantages for siblings of their child were analyzed for themes. What was found was that majority of parents in the Rett syndrome group reported both disadvantages and benefits for siblings. In the Down syndrome group benefits were commonly reported by parents who were socio-economically advantaged and by larger and two-parent families. Major disadvantages for siblings were centered on personal and parental constraints, relationships and socializing, restrictions, parental emotion and burden of helping. Major benefits were related to personality characteristics.

Behavioural-Genetic Influences

O'Kelley, S. E. (2007). Individual and family influences on the adjustment and functioning of siblings of children with autism spectrum disorders or down syndrome. (Order No. AAI3252024, Dissertation Abstracts International: Section B: The Sciences and Engineering, , 1316. Retrieved from http://search.proquest.com.ezproxy.library.yorku.ca/docview/622023497?accountid=15182. (622023497; 2007-99016-122).

This study was the first study to combine behavioral-genetic and family system models to clarify the experience of siblings of children with Autism Spectrum Disorder and siblings if children with Down syndrome. The primary focus was the siblings’ mental illness, siblings’ expression of subclinical symptoms of ASD, parental stress and level of dysfunction of the child with the diagnosis. Parents surveys were completed by 57 parents of children with Autism Spectrum Disorder and 54 parents of children with Down syndrome. Siblings for groups were well-adjusted overall, however some of the subgroups of siblings exhibited significant behaviors across both areas of impairment. There was a significant level of parental stress for both groups however parents of individuals with ASD reported higher levels of probrand related stress than parents of individuals with DS. Two separate models were used for predicting sibling outcome including; sibling BAP (Broader Autism Penotype), parental stress, family dynamic and family compositions. Within both groups, sibling adjustment was better when the sibling had fewer BAP characteristics, fewer parent-child interactions difficulties and decreased age differences between siblings and with the expression of the BAP it was associated with fewer adjustment problems, higher maternal education and income and a larger age distance between siblings.

Interactions

Kaminsky, L., & Dewey, D. (2001). Siblings relationships of children with autism. Journal of Autism and Developmental Disorders, 31(4), 399-410. doi:http://dx.doi.org/10.1023/A:1010664603039

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Majority of research that has been completed focuses on the relationships amongst peers and parent-child relations with regards to having a disability. However siblings also share a relationship that is important within a family unit. Having a positive relationship within a family dynamic is important whether it be a parent or a sibling because it helps a person to grow and to feel better about them. Few studies have investigated how developmental disability in children influences interactions with siblings, however the results of these studies suggest that child with developmental disabilities and their siblings show similarities in their interactions compared to normally developing sibling pairs. Children with disabilities such as Down syndrome have been found to spend similar amounts of time interacting with their siblings and engage in similar types of interactions as normally developing siblings. This entry focuses on the affects on having a sibling with a child with a disability more specifically a child with either Down syndrome and Autism and how there relationships differ from those siblings’ relationships who do not have a disability. Within observational studies it was reported that there were some difference in interactions with their siblings. Children with disabilities were more likely to show interactions with siblings that we more typical of younger children, such as; imitative behaviors. Also they were less likely to initiate interactions with their siblings than non-disabled children, and lastly, siblings of children with disabilities tended to be more prosaically and nurturing towards their affected sibling than siblings of normal developing. Since there is impairment in social abilities with autism, it seemed likely that children with Autism and their children might differ from other children with developmental disabilities. Knott et al, noted that children with Autism interacted less with their siblings, and that siblings of children with Down syndrome, had a tendency to show a much wider range of responses then normal developing siblings. To a negative there is always a positive, McHale et al (1986) also reported that siblings viewed their relationship with their sibling with Autism or Down syndrome more positively when they accepted the child’s role as a member of the family, perceived minimal parental favoritism and were not worries about the child with the disability. Having the appropriate coping abilities and being able to understand their siblings disability and having positive responses from parents and peers towards the child also encourages positive sibling relationships. In this entry it was also found that there was certain demographic variables that influence siblings perception. Children who were younger than the child with the disability, had the tendency to feel rejected towards their siblings than older sibling did. It was also reported that siblings had more concerns about the future and a less positive role of their sibling in the family when the child was a male. Also having a larger family size was related to fewer feelings of embarrassment about the child with the disability and fewer feelings or burden. However throughout the research it had been noticed that certain factors that play an important role in the relationship of normally developing children with their siblings with Autism were not being investigated such as; dominance, affection, companionship, intimacy, admiration and competitiveness. They used the Sibling Relationships questionnaire, which has not been used in previous children with Autism to investigate these qualities of sibling relationships in families with Autism Down syndrome and families of normally developing children. The method that was used was 90 children and adolescents between ages 8-18 and one of their parents. There were three groups of 30 children and adolescents that were a) individuals who had a sibling who was diagnosed with Autism, b) individual who had a sibling who was diagnosed with Down syndrome and c) individuals who had a sibling with no known disability. What was found was that siblings of children with Down syndrome reported to have greater admiration by their siblings and less competitiveness and arguing in their relationships with their sibling compared to normally developed sibling pairs. There were also some similarities shown in their interactions compared to normally developing siblings pairs, they would spend similar amounts of time interacting with their sibling and engage in similar types of interactions as normal sibling relationships. With both Down syndrome and Autism the results differed with regards to their relationships with their siblings compared to a sibling relationship that did not consist of a disabled individual.

The Mother's View

Poehlmann J, Clements M, Abbeduto L & Farsad V. (2005). Family experiences associated with a child’s diagnosis of Fragile X or Down syndrome: Evidence for disruption and resilience. Venous Mental Retardation, 43(4), 255-267.

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This study involved interviewing eleven mothers of children who were diagnosed with Down syndrome. These cases were compared to eleven mothers of children who were diagnosed with other types of special needs; most commonly Fragile X syndrome. In both groups, the people with special needs were either adolescents or young adults. The interviews were held between the mother and one interviewer. They were asked question such as to describe their child in three words, or to discuss their interactions with other family members. The mothers were asked about problems in the home and their emotional reaction during the diagnosis of the child. In a majority of the cases for both groups, the family reacted to the diagnosis in a way of mourning. They mourned the loss of the potential child that could have been. The mothers of the Down syndrome group were described as having less stress than the other group because they had more support and knowledge on the disability. Most of these mothers learned about their child’s diagnosis before they were born which allowed them to celebrate the birth of their child because they already went through the mourning process. Many of the other disabilities were discovered after the birth of the child. The stress is greatly tied to the feeling of uncertainty about the child. The parents stress about their child’s future and the possibilities it holds. The mothers described their child’s connection with other family members as being positive. A majority of the mothers highlighted their child’s kindness, empathy, and sensitivity to other’s feelings. They described how often a child with Down syndrome was able to tell when someone else was sad before others would notice. This was described as helping the family connection. In opposition to these feelings, there were many accounts of challenging behaviors in children with Down syndrome. Common descriptions of these children were their stubbornness, aggression, moodiness, and anxiety. This led to challenges within the household and in public.
I believe this study will provide you with a valuable emotional aspect of having a child with Down syndrome in the family.

Here is a short 4 minute video on one families experience, when they first discovered their child had down syndrome: http://www.youtube.com/watch?feature=player_detailpage&v=VNvayF6ASOo


Autism

Effects on Language

Ben-Yizhak, N., Yirmiya, N., Seidman, I., Alon, R., Lord, C., & Sigman, M. (2011). Pragmatic language and school related linguistic abilities in siblings of children with autism. J Autism Dev Disord, 41(6), 750-760

Warber, A. (LoveToKnow Autism). (2006). Broader Autism Phenotype. Retrieved from: http://autism.lovetoknow.com/Broader_Autism_Phenotype

As many know, several autistic children are prone to language and school related linguistic difficulties. Various people wondered whether siblings of these children with autism are somehow prone to these complications as well, for example also having a hard time with language or other disabilities. A study showed that siblings of children with autism are more at risk of developing broad autism phenotype then those with normal siblings. Broad autism phenotype refers to traits in people that show some autistic symptoms like language and communication problems. These people however, don’t fit into the criteria for being autistic (Warber, 2006). People who have broad autism phenotype usually have a relative or sibling with autism so researchers believe it’s somehow related with their genetics (Warber, 2006). In the study done, it compared a group of siblings of children with disabilities to siblings of children with normal development. According to standardized testing completed in the experiment, about 28% of siblings of children with autism within their first 24 months of life, show language and/or cognitive delay (Ben-Yizhak et al, 2011, p. 751). This also confirmed some children had broad autism phenotype. Further testing done showed that these children with delays showing up into 36 months of age disappeared altogether by 54 months. According to more standardized testing and parental reports, children 7 years of age showed difficulties in language, school related activities and cognition. Further examination of development of these siblings of children with autism between the ages 14 months and 7 years showed that some of these difficulties were apparent throughout the years while in others it was only seen in certain stages of the child’s life, as well as some showing first signs of difficulty at age 7 (Ben-Yizhak et al, 2011, p. 751). All these results were found with siblings of children with autism. By looking at this information, you are able to see that being related to someone with autism commonly had an effect on the child. Parents must keep this in mind, but they must also know that more than likely the effects on the child will disappear or decrease as the child grows. This is a good article to use as it discusses the experiment well and has a good comparison of siblings of children with disabilities to children of normal development. It also talks about a condition call broad autism phenotype, that is connected to being related to someone with autism and the effects the children have, related to this condition. This article also provides different graphs and charts comparing some of their results which are good visual aids.

Pilowsky, T., Yirmiya, N., Shalev, R. S., & Gross-Tsur, V. (2003). Language abilities of siblings of children with autism. J Child Psychol Psychiatry, 44 (6), 914-925

Among other things, difficulties in expressive and receptive language and specific learning disabilities as well as poorer performance on verbal fluency, were found in siblings of children with autism (Pilowsky et al, 2003, p.914). There are many ways one is characterized with having autism, one of which is Language deficits. There were no language problems found in skills evaluated by formal language tests, IQ, or academic skills, in siblings of children with autism, according to one researcher. Yet other researchers stated that the language abilities of siblings of children with autism do not change from those of siblings of children with other diagnoses or with normal development. It was also found that siblings of children with autism achieved higher scores on expressive, receptive and total language scales of the Children’s Evaluation of Language Fundamentals, and on verbal IQ, than siblings of children with developmental language disorder (Pilowsky et al, 2003, p.918). There was also some evidence found with twins, where one was autistic and the other was not and the one that wasn’t autistic would still have some language impairment during their childhood. This was also more common with identical twins then with non-identical twins. As seen from all this information collected from this study, the language difficulties in siblings of children with autism vary. This can be seen where some say there can be very little differences in language issues, mostly with respect to comparing them with other disabilities. Meanwhile others find a huge difference in the language problem. This study in particular can be very useful as it compares siblings of autistic kids with those of other disabilities, and looks at many different points of view like looking at twins, giving more diversity to the study. It has many good points as mentioned above with interesting discoveries against the children. During their experiment as well, they made sure nothing would affect their results that they were testing. So they made sure all subjects were relatively the same with the same age group, all speaking the same language and living in the same place. This helps ensure their study is more reliable; these details are mentioned on page 915. They also used tables to help organize their results and made it very clear which disability they were talking about and comparing it to siblings of children with autism so this was helpful. The whole article also focuses solely on language abilities of siblings of children with autism, as every point made referring to some other disability always relates back to autism and how it has either the same or different results.

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Social and Emotional Effects

Pilowsky, T., Yirmiya, N.,Doppelt, O., Gross-Tsur, V.,& Shalev, R.S.(2004 ). Social and emotional adjustment of siblings of children with autism. J Child Psychol Psychiatry, 45 (4), 855–865.

As expected, growing up with a sibling who has autism can have some emotional and social effects on the child, in addition to genetic factors. Autistic children already present many challenges to the members of their family. The siblings of these children then have to cope more on their own since they have less attention to themselves and more to their sibling. They also have to cope with changes in activities, family roles, structure, and feelings of guilt, on top of the minimal attention from parents. These factors, along with stress on the parents on having to raise an autistic child, may affect the sibling’s functions and well-being (Pilowsky et al, 2004, p. 855). In previous study done, information on the effects of social and emotion on these children are not consistent. Some found loneliness, behavioural problems and depression in siblings of children with autism when comparing them to kids with normal siblings. Meanwhile others found that siblings of children with autism were well adjusted individuals and having positive self-concept, when compared to siblings of other disabilities and normal development (Pilowsky et al, 2004, p. 855). After reading about inconsistency with other experiments, another study was done and results found that siblings of children with autism are all around well adjusted, and this is safe to say since they were tested on behavioural problems and socialization skills and theses children were found to have normal behaviour and social skills. Something else found from the research was that as the sibling’s ages, they had more positive feedback about their sibling with autism emphasizing that as these children grow older they aren’t being affected by the adjustment on having a disabled sibling. Another factor that was said to make a difference in these siblings was the verbal ability of the autistic individual. Those with more verbal disability proved to add daily challenges. With this also in mind, those children with more severe autism show to have a greater impact on their siblings and as a result the siblings have a harder time adjusting (Pilowsky et al, 2004, p. 863). I believe this is a very good article to include as it gives many points of view and compares previous experiment done to the one they have just recently done, in order to make the information more reliable and consistent. They have many good points about siblings of autistic children and help to in a way, prove that they are overall well-adjusted to their sibling’s special needs. It not only compared children of autism but also of those with Down syndrome as well as normal developing children and those with developmental language delay (DLD).

Behavioral Adjustment

Hastings, R.P. (2003). Behavioral Adjustment of Siblings of Children with Autism. J Autism Dev Disord, 33 (1), 99-104.

Over the past, there have been many studies done in terms of the impact on children in having a disabled sibling. The evidence has not been shown to be consistent with some saying there are positive results, others have negative results, and still others believe the impact is not different then from siblings of normally developed children. Some believe through research that, specifically children with autism have an increased risk of a negative impact like depression when compared to other disabilities and normally developed children. This study showed that brothers of children with autism seemed to have more of an adjustment problem compared to girls (Hasting, 2003, P.103). Also children younger than their sibling with autism seemed to show more adjustment problems as well (Hasting, 2003, P.103). Even though this was found, it is believed that they are not consistent enough and therefore more research needs to be done in order to prove this is the case. This is a good article to include as it talks about the effects on the sibling of children with autism and the more common effects seen and in which type of children (age, gender, etc.). It also does have some good explanations as to why they believe the children are being affected the way they are, like brothers having more adjustment problems, and they try to back it up with their evidence along with evidence from other researches. This is a brief article but very informative and I believe worth the time to look into.

Sibling Relationships

Kaminsky, L., & Dewey D. (2001). Siblings Relationships of Children with Autism. J Autism Dev Disord, 31 (4), 399- 410.

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Relationships with other people are a very important part of life. Probably the strongest relationships made are between parent and child. What is not as known though is that sibling relationships are just as important and this can be said especially with any disabled individual. These relationships between siblings have been shown to be a very important part for social behaviour in early childhood (Kaminsky et al, 2001, p. 399). There have not been many studies done about the relationships of siblings with disabilities but with the results from what is out there all see to say that the relationships between normal siblings and the relationship between a sibling who in normal and one that has a disability, does not differ but show many similarities between there interactions. They are seen as spend the same amount of time interacting with one another as normally developed children although it has been seen in a study that the disabled child, regardless of age, seems to act younger then there sibling. Siblings of disabled children tend to be more nurturing and social to others and also not have as much competition with their sibling compared to children of normal development. One characteristic associated with autism specifically is impairment of social abilities. Therefore people assume that the interactions between sibling and autistic sibling would be seen to differ when compared to other disabilities (Kaminsky et al, 2001, p. 399). In one study, it was shown that children with autism were not as prosocial, did not spend as much time with their sibling, and didn't imitated there sibling as much, although through all this it was shown they were likely to initiate contact with their sibling and demonstrate social skills. In the study done in the is article, it was reported that siblings of children with autism were fewer prosocial in their behaviour toward their siblings and less nurturing and intimacy in comparison of siblings of children with down syndrome and siblings of normally developed children, but this is related to the social deficits with autism. Autistic children are less responsive to others emotions and often have a hard time understanding others perspectives so this is connected to being less nurturing. Something else that is characterized with autism is communication and social defects so this then connects to the less prosocial nature in these individuals. These are just some of the results found in this study. This is an excellent article to include in your work as it brings many valid points in comparing autistic children’s relationship with their sibling and vice versa. It also does a good job at comparing autism to Down syndrome as well as normally developing children in what the common characteristics of their relationships are. It brings out many interesting points about the relationships between the sibling with autism and how it all goes back to the actual disability being the main reason for that specific result. It shows how’s in this experiment as well as the few others that have tested siblings of autistic children’s relationship, have found very similar result where the sibling is more positive to the autistic child and don’t have the same competition with their sibling. Therefore, with all these points in mind I find this is a strong piece to include in your study.

Sibling Socializing

Smith, T. L. (2007). Siblings of children with autism: An investigation of sibling and parent characteristics contributing to positive and negative psychosocial outcomes. (Order No. AAINR21884, Dissertation Abstracts International: Section B: The Sciences and Engineering, 637.

This paper focuses on the difficulties that children of siblings with autism face in adapting to society and engaging with life in an effective way. Siblings of children with autism can have difficulties in adjusting and face more difficulties related to psychosocial adjustment (Smith 2006). The research focused on uncovering whether there were differences in the degree of social adjustment within the group (Smith 2006). The research was conducted on 72 siblings of children with autism, between 7 and 14 years old, parents and teachers were also interviewed. The research did in find that there was a variance in the social development in the siblings. It was also noted that it was not uncommon for siblings to be well adjusted and a smaller percentage had difficulties with effective socializing (Smith 2006). Different factors which contributed to the social development of siblings of children with autism were also investigated. The paper investigates the effects that raising a child with autism has on the parents including stress, depression and anxiety. The pressures associated with raising a child with autism can then be transferred on to the normally developing siblings within the household. This indirect effect from the parents can lead to difficulties in the sibling’s life and is associated with the pressures of trying to compensate for their siblings disability. The typical direct effects on children are also cited here: less attention from parents; taking on the burden of additional chores and responsibilities; taking on the role for caregiver for their siblings; assuming they should be developing at a faster rate in order to compensate for their siblings; as well as embarrassment when dealing with members outside the family. These pressures on young children can lead to stress and anxiety, as well as depression later life. This paper well organized and developed a wide range of research questions are included which examine the issues present in great detail. Allowances are made for the temperament of the parents, social economic status and level of parent advocacy on behalf of the child with autism within the household. Research was conducted via a questionnaire sent to the home. A detailed analysis of the participants is included (pp. 45-46). Feedback regarding the sibling’s performance academic performance was obtained from teachers. The research conducted in this paper is methodical and statistical in nature. Much care and attention is paid to the dependent and independent variables associated with this type of analysis. The research found that while, generally, siblings of children with autism were well adapted. One third of the siblings of children with autism displayed ‘internalizing and externalizing’ behavior (Smith 2006). The paper also notes that one quarter of the siblings had difficulties with prosocial behavior (Smith 2006). This paper is appears to be very comprehensive and complete, providing a wealth of information regarding the effects that having a sibling with autism can have on a child. It is highly recommended.

Strategies for Siblings

Guzman, N. S. (2009). A psychoeducational group for siblings of children with autism. (Order No. AAI3356106, Dissertation Abstracts International: Section B: The Sciences and Engineering, , 3171.

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This paper primarily acknowledges the difficulties that siblings of children with autism face in dealing with their siblings which include aggression, self-injury, impulsivity, Hyperactivity and temper tantrums. These issues can cause embarrassment and difficulties with normal socializing. There is also an increased level of depression among this group (Guzman, 2009). Noting that there was a lack of support for siblings of children with autism Nicole enacted a program which would assist these children and allow them an opportunity to share their experiences. The studies she cites regarding the effects of have a sibling with autism are consistent with other findings when rated against control groups and siblings of children with other disabilities, siblings of children with autism were in more stressful situations. This paper makes reference to a manual which the author has created. The manual is meant to be used as a guideline for siblings of children with autism and is provides a detailed course/program outline that should be followed from beginning to end. The purpose of the manual is to provide the user series of activities and tasks for children who have autistic siblings. It attempts to engage them on social and emotional levels in order to assist them opening and discussing the hardships they have faced and allow facilitation of discussion. The manual suggest programs such as, writing letters to share their concerns, meeting with other children in the same situation, meeting in groups and talking to other children in a similar situation. The manual is effective because the author appears to have a strong understanding of effects of having a sibling with autism has on a child. It can therefore respond appropriately to the children’s needs. They are to share their concerns and feelings and attempt to find themselves within in larger context of others in a similar situation. This paper goes beyond many of the established effects on siblings of children with autism and attempts to assist with some of the difficulties that they may encounter during their youth and in later life. The success of the manual is noted within the paper, citing studies in which the siblings were happy with the opportunity to share their feelings (Guzman 2009). They also enjoyed learning more about their sibling’s disabilities and learning strategies that better helped them to deal with their siblings. She also encourages that children share their feelings about their siblings with their parents, as issues of resentment, isolation and guilt can build up in children without a positive opportunity for release. The manual was then reviewed by two evaluators (both licensed psychologists) who work with autistic children, one with 6 years of experience that other with 18 years (Guzman 2009). The evaluators had favourable opinions regarding the manual. Overall this paper lays out may of the familiar issues that siblings of children with autism face and focuses on providing assistance to aid to these siblings by created a program that would suit their needs. I feel this information would be helpful in research as it expands upon the difficulties faced by siblings of children with autism and provides potential opportunities to lessen the impact on the sibling’s development and the accumulated negative effects in later life.

Surveying Parents

Boland, E. K. (1999). Issues related to siblings of children with autism: A survey of parents. (Order No. 9964863, University of Louisville). ProQuest Dissertations and Theses, , 117-117 p. Retrieved from http://search.proquest.com.ezproxy.library.yorku.ca/docview/304512117?accountid=15182. (304512117).

This paper seeks to provide insight into providing assistance to siblings of children with autism by having parents of both respond to survey questions. The author emphasizes that parents are the most knowledgeable regarding the issues their children face they should be sought after experts who can provide information which can be used in creating support programs (Boland 1999). One limitation noted by the author is the limited number of parents who completed the survey. This paper is detailed on its recounting the history of autism; the nature of relationships with parents and siblings; legal frameworks set up for dealing with autistic individuals. It also develops the specifics behind the relationships. The relationships between autistic children and their siblings is examined, as well as its effects short and long term. The author lays out a general outline of sibling relationships and their importance throughout life, expanding on this, she establishes the difficulties faced by the siblings of children with autism, not just in early life, but how their relationships grow throughout life. The survey questions attempt to better understand the interactions between siblings based on the parents’ points of view. The survey questions are provided in the paper and were created with the assistance of experts within the field (Boland 1999). The limitations of the study are provided and focus on a small number of respondents from a particular region in the United States. However the findings are an effective marker of the parent’s views. This paper is limited in scope and results acquired; however, it does provide significant information related to autism, sibling relationships. It also delves into effects on the home life situation based on socioeconomic status. Much of the findings in this paper are consistent with the effects on siblings and families in general. Although this paper is somewhat dated, much of the information it provides is historical, and when compared to recent paper we can see a continuation of certain trends with and difficulties which continue to effect the children of siblings with autism.

The Sibling Perspective

Moyson, T., & Roeyers, H. (2011). The quality of life of siblings of children with autism spectrum disorder. Exceptional Children, 78(1), 41-55. Retrieved from http://search.proquest.com.ezproxy.library.yorku.ca/docview/964171237?accountid=15182

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This paper is an analysis on the quality of life of a child of a sibling with autism. The information was obtained via in-depth interviews of 17 respondents aged 6 to 14. It should also be noted that these interviews were conducted in Belgium, this would provide us with information which goes beyond information based solely out of North America. This paper is a response to inconsistent data regarding relationships between children of siblings with autism, and those with other developmental issues (Moyson, Roeyers 2011). This paper is also effective as the data is qualitative in nature and seeks to better understand the children’s personal experiences; the method outlined was to conduct three separate interviews, refining subsequent questions based on individual respondents answers (Moyson, Roeyers 2011). The authors break down the quality of life into 9 distinct domains, each of which is a section in the paper. Direct quotes from their interviews are included in each of the sections. This is perhaps the most unique aspect of this paper. Since the interviews were conducted on children, many of the responses are very candid and insightful. It is also notable that they are very colourful and provide the opportunity to quote and present personal data. This is perhaps the least clinical and most enjoyable paper to read. It also provides a real connection to the children who are effect by having a sibling with autism. The insight that can be gained from this research adds well to the quantitative date already provided by other papers. I highly recommend this paper as it would serve to add depth an insight into the analysis of the topic.

An Insider's Guide

Naoki Higashida,, KA Yoshida., David Mitchell. (Trans). (2013). The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism. New York, New York: The Random House Publishing Group

This is a book written by a thirteen-year-old boy with autism. While does not have direct reference to sibling relationships, it does provide insight into the situation from the other point of view. As autism is a condition which effects communication and social interaction, a book written by someone trapped in that condition is a marvel in and of itself. The focus of our analysis has been primarily siblings and families, and how they have been effected, but we have only focused on half the story. It would also be important to consider, even if briefly, the other half. The effects on siblings and parents when dealing with an autistic family member are remarkably challenging and cannot be fully understood by someone on the outside. So too with autism. As we examine the effects of having a family member with autism and the challenges it presents, we should consider the other half. Someone living with autism or any other disability has limitation that they must overcome. This book presents the reader some insight behind the actions of autistic people. It is not comprehensive, or statistical and it is highly subjective, but it does provide a deeper human understanding. Naoki attempts to translate his understanding of the world (the autistic perspective) into one that we can all understand. This would be helpful and informative in forming some considerations and approaches when dealing with the subjects of siblings. While autistic people have a difficult time communicating they can understand and they are aware when they are perceived as burdensome. This can no doubt affect them negatively. I suggest that due attention has been paid to the effects that autistic people have on those around them. Perhaps adding some information on how we can manage ourselves, how siblings can interact with their autistic brothers and sisters and how parents can better cope with their autistic sons and daughters would add fair perspective. After all a person with autism is just like the rest of us, seeking a place to belong.

Family Therapy

"Autism." World of Health. Detroit: Gale, 2007. Student Resource Center Gold. Web. 30 July 2009.<http://find.galegroup.com/ ips/start.do?prodId=IPS>.

Amstad, Cori. "Jenny McCarthy: actress, author, activist. (readers speak out)(Letter to the editor)." Shape 28.11 (July 2009): 16(1). Student Resource Center Gold. Web. 30 July 2009. <http://find.galegroup.com/ips/start.do?prodId=IPS>.

Many treatments have developed in recent years that address the developmental challenges of those with autism, including speech and language therapy, occupational therapy, and social skills training. Certain recreational activities, and perhaps specialized dietary regimes, may also facilitate the development of children with autism.
A variety of approaches to addressing autism feature family involvement. Involving intensive parent-child play; Collaborative problem solving between the child and parents aims to increase the ability of children to manage their impulses and think more flexibly. As well as Functional Behavioral Analysis, which focuses on improving behaviors, both involve parent-child interaction. Beyond specific approaches, research and experience have shown that parents can take a number of steps to enhance their children’s development, including focusing on strengths, maintaining consistent routines, encouraging play dates, to enhance social functioning.
Each family member and family relationship faces particular challenges throughout these time periods. Struggles to reconcile differences about parenting and treatment approaches can stress the parental relationship. Siblings may struggle with feelings of embarrassment, and are often jealous at the attention and care that parents give to their siblings; as adults, many face the stress of caretaking. Differences often ensue between extended family members and parents over both the causes and the remedies for the challenges of autistic children.
Family stress and strife can exacerbate the challenges of people with autism. Autistic individuals thrive in consistent, calm environments, and need families to serve as effective advocates and caretakers.


Comparing the Effects of Down Syndrome to Autism

O’Kelley SE. (2007). Individual and family influences on the adjustment and functioning of siblings of children with autism spectrum disorders or Down syndrome. Information and Learning, 68(2), 1316-2007.

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This study focuses mainly on the siblings of children with autism and on the parents. It looked at how the siblings adjusted to certain things, if they had any symptoms related to autism, the stress level of the parents and related it to the dysfunctional level of the child with autism. The study then looked at these specific things in families with a child with Down syndrome. The parents were surveyed; 57 parents of children with autism and 54 parents of children with Down syndrome. The siblings for both groups were described as adjusting well. There was a significant increase in stress for both groups when studying the parents. There was a positive correlation between the amount of autistic characteristics compared to the adjustment of the siblings. The higher the dysfunction of the autistic child, the more trouble the sibling had adjusting to things in life. The adjustment problems of siblings of children with autism are qualitatively different from the siblings of children with Down syndrome and other disabilities. The siblings of autistic children, due to genetics may be exposed to some of the genes that cause autistic characteristics. This is different than Down syndrome which you either have or you do not. There is a general observation among both groups that the siblings tend to have additional responsibility in the home. Also, older siblings usually take a caregiver role for the sibling with special needs. Both disabilities have been identified for creating a guilty sibling who often feels that it is their fault the other child has special needs. This study discovered in increase in behavioural problems for the siblings of autistic children compared to siblings of Down syndrome children. The siblings in the autistic study also had greater stress, higher levels of depression, lower social behaviour and poorer social skills compared to other households. Another theory for these differences is due to how the disability presents itself. Down syndrome has physical characteristics that indicate the special needs quality of the child. Autism is described as having an invisible nature in a sense that bystanders would be unable to tell the child had special needs just by looking at them. This is hypothesized to have a greater stress affect on the family members of the autistic child because they have to explain irrational behaviour to others instead of people simply understanding. When viewing the relationship between a child with Down syndrome and their sibling, it was described as having more positive interactions. The sisters of children with autism generally had an increase in social competence, while brothers of children with autism tended to have a decrease in it when comparing it to families with a Down syndrome child or non special needs child. The age of the sibling of a child with autism also plays a large role in the social development of the sibling. If the sibling is younger than the child with ASD, then there is generally a decrease in socially acceptable behaviour. Also, the smaller the gap in age between the sibling and the child, the more difficulties there are for the sibling. In addition to this, if the child with special needs and the sibling are of the same gender, there is an increase in negative affects for the sibling related to adjusting to situations. The smaller the family also leads to more problems for the sibling of the special needs child. This is especially true for families where there are two children; one with special needs and one with normal development.
I believe this article outlines the major differences between Down syndrome and autism and their affects on the families. It would be of great use for your research to show how different types of special needs lead to different outcomes.

Adults

Hodapp RM & Urbano RC. (2007). Adult siblings of individuals with Down syndrome versus with autism: Findings from a large scale survey. Journal of Intellectual Disability Research, 5 (12), 1018-1029.

This article outlines the different affects of having a Down syndrome sibling versus an autistic sibling. The study is based on adults and their research is done with questionnaires of the siblings of the special needs adults. The results showed that generally siblings of an adult with Down syndrome were able to have better and closer relationships with their sibling. They also had better health and a decrease level of depression. In addition, they generally had more relationships. The sibling with a disability who had less behavioral and emotional problems generally had siblings who felt like they had accomplished more. Overall, the study suggests that the siblings to those with Down syndrome had a happier and healthier life than those with autism.
I believe this would be a beneficial study for you to review because it views the adult sibling relationship and provides very good information on why autism has more of an affect then Down syndrome on the siblings.

Stress During Transition Stages

Belchic JK. (1996). Stress, social support, and sense of parenting competence: A comparison of mothers and fathers of children with autism, Down syndrome, and normal development across the family life cycle. ProQuest Information and Learning, 8(13), 452-489.

This study compares the challenges that families face when having a child with autism, Down syndrome or no disability. They discovered that having a child with special needs increases stress significantly during times of transition. Birth and adolescents are seen as the two most stressful stages for the families. During the birth stage, the parents or siblings often blame themselves for the diagnosis and they are still in shock about what is happening. A study showed that mothers of children with a disability often viewed themselves more negatively compared to parents of children without a disability. Childhood is viewed as the easiest time for families with a special needs child. This is due to the fact that the family has dealt with the initial shock and they are in a routine with school. The school also provides the parents with a lot of support and allows them to take a break. The different variables that impact the stress level with having a child with special needs is their age, the severity of diagnosis, and the availability of social support. Usually children with Down syndrome have an increase in dependency and care giving demands on the family as they get older. Adolescence typically marks a period of transition towards independence for children without a disability. The parents of a child with special needs do not get to look forward to this stage in life. Instead they will have a harder time carrying out the same behaviour management and care skills that they used on the child when they were younger. In addition to these struggles, the family will have to begin to think about long term placement for the person with special needs. They no longer have an education system to rely on and the parents begin to age and are not physically strong enough to care for their child. This is why this stage often marks the most stressful time for families with a special needs person in it. The study then discusses how the severity of diagnosis has an impact on the families. Families with autistic children usually have more stress because this disability is more unpredictable. Autism reported more cases of interference with family functioning. These families also reported that there was more embarrassment and difficulties with taking an autistic child out compared to a child with Down syndrome for many different reason.
I believe this article will be useful when discussing why stress levels change in children with special needs.

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Additional Videos

Autism:
http://www.youtube.com/watch?v=ywnHFLpMVIo
http://www.youtube.com/watch?v=HtdgCFe094U

Down Syndrome:
http://www.youtube.com/watch?v=Ju-q4OnBtNU
http://www.youtube.com/watch?v=mpOLacyXfIY
http://www.youtube.com/watch?v=uYVjJX600-M


Group 42's Summary

Through out all the research I have read, I have come to learn that this disability, autism, dates back to the 1500s and how they people felt about this disability in ancient geek and Egyptian times and how they dealt with it. I have really come to understand more about what the families go through and the different effects it can have on them. There are also different ways siblings of children with autism can be affected like they are more prone to broad autism phenotype, which means they can show some autism like symptoms which can go away as they get older. Also how just having a sibling with autism can effect your social skills which can be either positive or negative and how it can effect their language as well.
-Katherine

This research has opened my eyes to many of the things families have to go through with having a special needs child. There are many joys and pains accompanied with this aspect in the family. The main thing that I discovered was why autism and Down syndrome have different affects on families. The major contributing difference is that Down syndrome is a well known disability and is physically detectable by strangers who are encountering the different behaviours of the child. Autism on the other hand is not physically noticeable, and does not fit exact criteria. There is a lot of grey matter within this disability, and there is a possibility of fitting autistic characteristics but never being diagnosed with it. This unknowing quality adds more stress to the people having to explain behaviour or looking for answers as to why it happens.
-Sarah

Throughout all the research I have read, I have came to a conclusion that when having a child who is a sibling of a disabled child their relationships depend on the environmental influences and what is around them. If they have two parent families or a huge support system that increases the likelihood of the sibling to be more attached to their disabled sibling rather than having a single parent who is juggling between children. Also coping abilities, if the parent teaches their child without the disability about what his/her sibling has and help them to cope with it, there relationship can grow and will still be able to enjoy, and I believe that it is better that they are taught at a young age so that they can grow with that mentality.
-Nikki


References

Autism speaks inc. (2014). What is Autism? What is Autism Spectrum Disorder?. Retrieved from: http://www.autismspeaks.org/what-autism

Autism Speaks Inc (2014). Training and Education of Autistic and Related Communication Handicapped Children (TEACCH). Retrieved from http://www.autismspeaks.org/what-autism/treatment/training-and-education-autistic-and-related-communication-handicapped-children

Belchic JK. (1996). Stress, social support, and sense of parenting competence: A comparison of mothers and fathers of children with autism, Down syndrome, and normal development across the family life cycle. ProQuest Information and Learning, 8(13), 452-489.

Ben-Yizhak, N., Yirmiya, N., Seidman, I., Alon, R., Lord, C., & Sigman, M. (2011). Pragmatic language and school related linguistic abilities in siblings of children with autism. J Autism Dev Disord, 41(6), 750-760

Boland, E. K. (1999). Issues related to siblings of children with autism: A survey of parents. (Order No. 9964863, University of Louisville). ProQuest Dissertations and Theses, , 117-117 p. Retrieved from http://search.proquest.com.ezproxy.library.yorku.ca/docview
/304512117?accountid=15182. (304512117)

Cunningham.C.C. (1996). Families with children of Down Syndrome. Down syndrome research and practice (4). Retrieved from http://www.down-syndrome.org/perspectives/66/perspectives-66.pdf

Cuskelly M, Chant D & Hayes D. (1998). Behaviour problems in the siblings of children with Down syndrome: Association with family responsibilities and parental stress. International Journal of Disability, Development and Education, 45 (3), 295-311.

Davis. P.C (2013) Down Syndrome Overview. Retrieved from http://www.medicinenet.com/down_syndrome_overview

Fergus.K (2009). Treatment of Down syndrome. Retrieved from http://downsyndrome.about.com/od/downsyndrometreatments/a/Treatmentess_ro.htm

Guzman, N. S. (2009). A psychoeducational group for siblings of children with autism. (Order No. AAI3356106, Dissertation Abstracts International: Section B: The Sciences and Engineering, , 3171. Retrieved from http://search.proquest.com.ezproxy.library.yorku.ca/docview
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Hastings, R.P. (2003). Behavioral Adjustment of Siblings of Children with Autism. J Autism Dev Disord, 33 (1), 99-104.

Harbour, C.K.,& Maulik P.K. (international encyclopedia of rehabilitation). (2010). History of Intellectual Disability. Retrived from: http://cirrie.buffalo.edu/encyclopedia/en/article/143/

Hodapp RM & Urbano RC. (2007). Adult siblings of individuals with Down syndrome versus with autism: Findings from a large scale survey. Journal of Intellectual Disability Research, 5 (12), 1018-1029.

Holsen. M. L, "Specific Worries in Siblings of Children with Down Syndrome" (1999). Honors Projects. Paper 82. Retrieved from http://digitalcommons.iwu.edu/psych_honproj/82

Kaminsky, L., & Dewey D. (2001). Siblings Relationships of Children with Autism. J Autism Dev Disord, 31 (4), 399- 410.

KidsAbility (2010). Information Resources A-Z Links. Retrieved from http://www.kidsability.ca/en/alllinks

Moyson, T., & Roeyers, H. (2011). The quality of life of siblings of children with autism spectrum disorder. Exceptional Children, 78(1), 41-55. Retrieved from http://search.proquest.com.ezproxy.library.yorku.ca/docview/964171237?accountid=15182

Mulroy, S., Robertson, L., Aiberti, K., Leonard, H. and Bower, C. (2008), The impact of having a sibling with an intellectual disability: parental perspectives in two disorders. Journal of Intellectual Disability Research, 52: 216–229. doi: 10.1111/j.1365-2788.2007.01005.x

Naoki Higashida,, KA Yoshida., David Mitchell. (Trans). (2013). The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism. New York, New York: The Random House Publishing Group

National Institute of Child Health and Human Development (2012). What are common treatments for Down syndrome? Retrieved from https://www.nichd.nih.gov/health/topics/down/conditioninfo/Pages/treatments.aspx

News Medical. (2001). Down Syndrome History. Retrieved from: http://www.news-medical.net/health/Down-Syndrome-History.aspx

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