Helping Siblings to Understand Autism

Prepared and Presented by Smrithy M 9 March 2013

Submitted to Karnataka Parents Association for Mentally Retarded Citizens for Diploma in Special Education (Autism)

Acknowledgement

My sincere thanks to

Dr.Shilpa Rao – For providing the right guidance to me whenever I was stuck through entire program.

Dr.Veronica Mathais – For providing moral support and flexibility to complete this course including the dissertation.

Sarbani Mallick – For supporting & guiding me in my difficult times & motivating me to work for my child.

Rajesh – My husband who helped me in formatting this dissertation document.

Adhithya – My elder child who inspired me to take this topic in dissertation.

Advaith – My younger son diagnosed with Autism who‘s cooperation and step by step progress kept my motivation level high.

Samyuktha Lakshmi & her parents for sharing & allowing the article to use in this dissertation.

Thanks to all parents who has shared their experiences with me for completing of my dissertation.

Chapter 1: Introduction

I am a parent of an autistic child. I have two kids, elder one is a normal child, 8 Years, studying in 2nd standard. Younger one is diagnosed with Autism when he was 2.3 years. Now he is 5 years old and going to a special school. We are living in Bangalore with my husband and 2 kids. When my child diagnosed with autism, it was a very difficult situation for us to accept that. Especially I was very upset and my elder son who is very attached with me also suffered a lot. In that stage he thought some illness is present for his brother. My family members told, younger one is diagnosed with Autism because I am not taking care of him properly. So I was so upset & suddenly I started giving more attention and care for the younger one. At that time my elder one was always sick and vomiting daily.

We took him to different doctors and they can‘t find any problem. After long time my family doctor told, it may be because of psychological issues. And she gave some tips on these issues. At that time I was also ready to accept autism and I decided to work with the help of my husband for our two kids. I started managing my timings equally for 2 kids and slowly make him understand about his brother‘s disability.

When he realized about the Autism, he told he want to take care of his brother and he asked me what all things he can do for him. So I explained him, how he can play with his brother and at that time the younger one was not enjoying his brothers company. He was busy with his self stimulatory behaviors. But I encouraged my elder one to cooperate with him. Now younger one is enjoying his brothers company and both of them are attached. My elder one helped his brother for interaction and play skills. Now he is explaining to his friends that his brother has some special needs. That‘s why he is not coming to our school. My elder son is very happy at home and at school. His teachers told me he is a very good performer. Always other parents ask me that how I am preparing my elder child. So I explains them about our family and now they are giving us a good support. From the school also, all the teachers are supporting us. His class teacher is spending more time to talk with him. So he is expressing all his feelings to her.

Now my elder son can understand his brother‘s condition and now we are happy in our family. So I think all the parents‘ especially mothers are facing these problems in their life with a disabled child. This is a serious issue has to be addressed otherwise, families will brake everyone will suffer. Hence I choose my topic as ―Helping siblings understand Autism‖. For that, first parents has to understand and accept the disability and they should also understand the feelings of Siblings.

For this dissertation work I had discussed with several parents about this issue. All of them shared their experiences about this. Most of the parents suffered a lot to make siblings understand about autism. From what they shared, I have included their experiences as follows.

One parent told me that her son is 14 years old and now a day‘s asking why his sister who is 7 years old (Who is diagnosed with Autism) come to this world. After his parents life she will be a liability for me.

Another parent told, elder son was diagnosed with Autism and after 6 years she got a normal child. She & her husband were working in Army so there was lots of support to handle the child. After the younger normal sibling came, then she felt the easiness in life. She is happy with two kids and they are very cooperative.

Another parent told that, the younger normal sibling told his parents that,‖ I would like to become an autistic child. Then only I will get my parents attention‖.

Following is an article wrote by a 7 year old Sibling about her Autistic Sibling.

My lovely sister, Sanjana

Like  we  are  normal  children,  there  are  children  with  special  needs.

Some special children Need Help to understand and talk to others. They could have autisum.

They have certain problems like: They can‟t speak properly, they can‟t understand, listen like normal children. Children with autisum are better than us for some things.

Like that, my sister (Sanjana ) has autisum. But for some things, my sister knows better than me.

Great things about my sister: Like me, I know how to whistle, write stories etc. My sister Sanjana also picked up many things from me. When she was less than three years old, she knew the car numbers of atleast 40 people. She knew at least 50 spellings. When my sister was around two and half years old and when I was four years old, I did not know the spelling of helicopter. My sister knew the spelling. And when I did not know how to use the computer or laptop, my sister knew it.

Funny things about children with autisum: Some times when autistic children want something, when they are in a hurry, they start jumping. Like that, my sister, Sanjana, was wearing my night dress. So it was too big for her and she did not know how to put it. She put it some way. And when we looked at her, she looked really funny. 

How to treat children with autisum: Sometimes children may not listen or respond. Because they have certain problems, do not scold them- Simple. because there is a way to teach. 

She might be listening, but look somewhere else. She will give funny answers and she finds it very difficult to talk to people, answer questions and even look at eyes. Although, she has language problem, she is brilliant in “by-

hearting” Doraemon Hindi dialogues and she says it so funnily and makes us laugh.

She can sing, draw, and write better than before. She copies me every day. She even creates her funny songs and tunes and plays funny games with me. She is usually happy and funny. But she understands when others are sad and angry. 

But Sanju had bad days. She used to scream whole day, bang her head. She used to cry too much. Those days, she never played with me. She used to push me. She used to do many strange things like laugh simply, banging table very hardly, moving her fingers near her mouth. She only knew „Mamma‟. My sister did not know how to even jump. But now, she does. She did not know how to talk. Now she makes us laugh. She did not know to hold a pencil. Now she draws. She is writing stories. You know who is her best friend ? Me !

I help my sister by teaching her how to talk, always being with her. I take her to play area, show my friends. I take her for singing class.

I request everybody to start teaching autistic children because I want children with autisum and their families to be happy.

By Samyukta Lakshmi Satish, 7 years

There is a common wish for all the sibling that their Autistic Brother/sister should get well and become a normal child. So that they can go to school together, play together etc.

In chapter 2, I am explaining about the overview of Autism that includes

·         What is Autism

·         How is autism diagnosed

·         How common is autism

·         What causes autism

·         Can it be prevented, Can it be cured, what is the treatment

·         How is it different from mental retardation

·         Can the child ever live and independent life

·         What are the chances of her going to a regular school

·         Can speech therapy help

·         Why is he hyperactive

·         Is there ant hostel for such children

·         Can they get married and have regular children

·         What does it mean to be on spectrum

·         Myths and facts about Autism

In chapter 3, I am explaining the importance of understanding autism by siblings.

Researches found that siblings without disabilities viewed their relationship with their brother or sister with autism as positive when

·         They had an understanding on siblings disability

·         They had well developed coping abilities

·         Experienced positive responses from parents and peers toward the sibling with autism

In chapter 4, I am giving tips for parents to understand siblings needs. In this chapter, I am providing information about sources of stress for siblings and what all effects on siblings because of these sources. In this chapter, I include information about autism in sibling perspective in each developmental stage. Also I have included the topic that contain how and when to tell all these information to siblings.

In chapter 5, I am finding solutions for the challenges that affect siblings of child autism.

In chapter 6, I am explaining about the strategies for developing positive relationships.

In chapter 7, I am explaining about activities to encourage communication for siblings. In this chapter I am giving different activities for different age groups.

In chapter 8, I am explaining about 12 important needs of siblings and tips to address these needs.

And in the conclusion part I am sharing information about the importance of addressing sibling‘s needs and how they will help their brothers or sisters to overcome their difficulties. In my case, after understanding brother‘s disability my elder child is coping up and my younger child is improving. And we are enjoying our life. This dissertation includes factors which have to be addressed for a family of an child with autism. I am including Do‘s and Don‘ts for siblings. Also, I am sharing information about the support services for the siblings.

I am dedicating this dissertation for the mothers of children who diagnosed with Autism. And I am sharing this information to the special educators to understand the impact of Autism on families.

Chapter 2: Overview of Autism

What Is Autism? What is Autism Spectrum Disorder?

Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. They include autistic disorder, Rett syndrome, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger syndrome. With the May 2013 publication of the new DSM-5 diagnostic manual, these autism subtypes will be merged into one umbrella diagnosis of ASD.

ASD can be associated with intellectual disability, difficulties in motor coordination and attention and physical health issues such as sleep and gastrointestinal disturbances. Some persons with ASD excel in visual skills, music, math and art.

Autism appears to have its roots in very early brain development. However, the most obvious signs of autism and symptoms of autism tend to emerge between 2 and 3 years of age. Autism Speaks continues to fund research on effective methods for earlier diagnosis, as early intervention with proven behavioral therapies can improve outcomes. Autism is known as a ‗spectrum disorder,‘ because the severity of symptoms ranges from a mild learning and social disability to a severe impairment, with multiple problems and highly unusual behavior. The disorder may occur alone, or with accompanying problems such as mental retardation or seizures.

How is autism diagnosed?

There are guidelines your doctor will use to see if your child has symptoms of autism. The guidelines put symptoms into three categories:

•         Social interactions and relationships. For example, a child may have trouble making eye contact. People with autism may have a hard time understanding someone else‘s feelings, such as pain or sadness.

•         Verbal and nonverbal communication. For example, a child may never speak. Or he or she may often repeat a certain phrase over and over.

•         Limited interests in activities or play. For example, younger children often focus on parts of toys rather than playing with the whole toy. Older children and adults may be fascinated by certain topics, like trading cards or license plates

How Common Is Autism?

Autism statistics from the U.S. Centers for Disease Control and Prevention (CDC) identify around 1 in 88 American children as on the autism spectrum–a ten-fold increase in prevalence in 40 years. Careful research shows that this increase is only partly explained by improved diagnosis and awareness. Studies also show that autism is four to five times more common among boys than girls. An estimated 1 out of 54 boys and 1 in 252 girls are diagnosed with autism in the United States.

By way of comparison, more children are diagnosed with autism each year than with juvenile diabetes, AIDS or cancer, combined.* ASD affects over 2 million individuals in the U.S. and tens of millions worldwide. Moreover, government autism statistics suggest that prevalence rates have increased 10 to 17 percent annually in recent years. There is no established explanation for this continuing increase, although improved diagnosis and environmental influences are two reasons often considered. Autism is fou nd throughout the world, in families of all economic, social & racial backgrounds. Doctors, polititions & rikshawdrivers alike all have children with Autism.

What Causes Autism?

Not long ago, the answer to this question would have been ―we have no idea.‖ Research is now delivering the answers. First and foremost, we now know that there is no one cause of autism just as there is no one type of autism. Over the last five years, scientists have identified a number of rare gene changes, or mutations, associated with autism. A small number of these are sufficient to cause autism by themselves. Most cases of autism, however, appear to be caused by a combination of autism risk genes and environmental factors influencing early brain development.

In the presence of a genetic predisposition to autism, a number of nongenetic, or ―environmental,‖ stresses appear to further increase a child‘s risk. The clearest evidence of these autism risk factors involves events before and during birth. They include advanced parental age at time of conception (both mom and dad), maternal illness during pregnancy and certain difficulties during birth, particularly those involving periods of oxygen deprivation to the baby‘s brain. It is important to keep in mind that these factors, by themselves, do not cause autism. Rather, in combination with genetic risk factors, they appear to modestly increase risk.

A growing body of research suggests that a woman can reduce her risk of having a child with autism by taking prenatal vitamins containing folic acid and/or eating a diet rich in folic acid (at least 600 mcg a day) during the months before and after conception.

Increasingly, researchers are looking at the role of the immune system in autism. Autism Speaks is working to increase awareness and investigation of these and other issues, where further research has the potential to improve the lives of those who struggle with autism.

Autism is not caused by an unhappy home environment, both parents working, mental stress during the pregnancy, poor handling by the mother, an emotional trauma, or other psychological factors. You cannot cause a child to become autistic.

Can it be prevented? Can it be cured? What is the treatment?

At this point we do not know what causes Autism and so cannot fix (cure) what is wrong in the child's brain. Many therapies (medications, diets, etc.) are being tried but nothing is proven. Similarly, without knowing the cause of autism, there is no way to prevent it. At present, there is no cure for autism: there is no medication, no pills, no injections which can make the problem go away. The only consistently effective treatment for autism is a structured training program; therefore, a combination of a good school and parent training is the best known treatment. Autistic children can make significant progress if the intervention is appropriate and consistent. Early intervention, before the child is five, is especially crucial to the child‘s progress. This is why an early and accurate diagnosis is so important. Autistic children grow to become autistic adults, and there is a particular need for meaningful outlets for social interaction and employment where possible.

How is it different from Mental Retardation?

When a person has M.R. there is a more or less even impairment in skills in all areas of development. Therefore, if an M.R. child of 8 years has a mental age of 5 then all his skills would be roughly around 5 years (i.e. motor, communication, social, self-help, cognition etc.). In Autism, there is an uneven skill development- in fact this is the hallmark of autism. In some areas the child may show age-appropriate skills; in some the skills may be below the developmental level; and then again there are people with Autism who possess exceptional skills i.e. beyond their age level.

Can the child ever live an independent life?

Autism is a spectrum disorder. Currently there is no reliable objective measure of how severe the Autism is in an individual child. Children with Autism have potential for building up their skills and they can be helped if they receive early, well-focused intervention. Depending on the child's individual skill profile and the appropriateness and intensity of intervention he or she receives, children with Autism can lead relatively independent lives.

What are the chances of her going to a regular school?

There are a number of autistic children who have integrated into regular schools. The chances depend on several factors. The most important is "What is the skill profile, how early diagnosis was received, and thereafter the kind of early intervention provided?" Most children with Autism have different learning styles from regular children and therefore teaching styles also need to be different. In some schools this is not understood and therefore children with Autism face difficulties; after Grades 4 or Grade 5 many have to drop out.

When and will my child ever speak?

A large member of autistic children (about 30-50%) do not use speech. It is very difficult to say when and whether the child will ever speak. It is confirmed that there is no difficulty in their physical abilities that stops them from speaking. Some children who might have spoken as infants and then lost their speech may or may not get their speech back. Currently, it is unknown why some children develop speech and others do not. Experience with children with autism has shown that if the environment is accepting, and people are aware of the kind of speech they themselves need to use with the child, it can produce positive results.

Can Speech Therapy help?

Speech Therapy can help some children. It is absolutely essential for the speech therapist to understand Autism and also the individual child. Otherwise, the conventional methods of speech therapy help children with Autism very little, because as stated above, the inability to speak is not a physical problem. However, every child with autism can benefit from interventions that emphasize communication.

Why is he hyperactive?

Hyperactivity can have a medical reason. However, most children with Autism are restless because of an impairment of their imaginative and social skills. They cannot play with their toys and other children meaningfully and find it very difficult to occupy themselves. Often they eat a lot to keep themselves occupied. Hyperactivity can be reduced as the children are taught new skills and ways to keep themselves occupied.

What are chances of Autism in the next child born to us? Can we have a normal child?

About 10% of the cases of Autism can be accounted for genetically. If there is one child with Autism in the family, risks of having another child with autism is much higher than in the general population. So far, there is no reliable test to detect Autism in the foetus.

Why does he keep playing with his fingers/ rocking himself back and forth/ spinning around etc?

Children with Autism respond to sensations abnormally. They often have a condition known as sensory dysfunction this means either over or under stimulation in any one or more of the sensory modalities (hearing, sight, taste, touch, smell, balance). One theory is that these unusual mannerisms like flapping and rocking etc. are natural responses or methods of coping with sensory difficulties. These behaviours may help them to relax.

Is there any hostel for such children?

Unlike some Western countries, in India there are few hostels for people with mental disabilities and ones exclusively for autistic individuals do not exist here. However, it is now increasingly accepted that during the early years of development, it is important for an autistic child to live and grow in a home environment. As the child grows up, he can be trained to live in a group home but it is very important for the autistic people living in such homes also to integrate with society in general and not just be abandoned in a home or hostel.

Can they get married and have regular children?

The essence of marriage is companionship. It is a union between two consenting adults and it involves adjustment and carrying on day to day responsibilities of life. It also involves an ability to the plan the future etc. Before deciding to marry an autistic person, the following things need to be considered:

--The level of functioning of the person.

--That the partner understands the needs of, and that he or she knows everything about, the autistic

spouse (if one of them is not autistic).

-- Financial status (employment, family support etc.)

However, since marriage is an issue of social commitment and companionship, by the very nature of the condition many able people with autism and their families choose not to marry.

What Does It Mean to Be “On the Spectrum”?

Each individual with autism is unique. Many of those on the autism spectrum have exceptional abilities in visual skills, music and academic skills. About 40 percent have average to above average intellectual abilities. Indeed, many persons on the spectrum take deserved pride in their distinctive abilities and ―atypical‖ ways of viewing the world. Others with autism have significant disability and are unable to live independently. About 25 percent of individuals with ASD are nonverbal but can learn to communicate using other means. Autism Speaks‘ mission is to improve the lives of all those on the autism spectrum. For some, this means the development and delivery of more effective treatments that can address significant challenges in communication and physical health. For others, it means increasing acceptance, respect and support.

The Impact of Autism on the Family

The impact of autism on the family is quite profound. It can help the family bond together or tear it apart. Raising an autistic child is, in fact, a very challenging time for the whole family.

The impact of autism on the family of an autistic child is mainly dependent on the role of the mother though the role of the family as a whole is an important factor in evaluating the complete effect. The mother's role is especially crucial since it is she who bears the maximum brunt of this long-term illness.

As the main role in bringing up children usually falls to the mother, she may be subjected to additional emotional stress. The emotional ups-and-downs range from utter disbelief through anger and then immense relief at finding out what is causing the child's unusual behavior. This, however, is not the end of the emotional spectrum as far as parents of autistic children is concerned since they experience surprise, guilt (that they are somehow responsible), devastated and, finally, perhaps, understanding of what they are dealing with. Bringing up a child with autism is challenging enough as it is and without support it can be exhaustive.

The impact of autism on the family can end up with strained relationships among the members of the family or even between the parents and can also have a detrimental effect on the workplace performance. This may lead to feelings of resentment or may possibly have a financial impact if the parents are forced to change working hours and responsibilities to fit the requirements of caring for the autistic child.

Some counselors suggest that autie-parenting should be the ultimate aim. The term 'Autie-parenting' refers to the intersection of the spheres of autism advocacy and parenting of the autistic child. This point of balance between seeking to see autism as a 'differentness' rather than a disease and exposing the child to therapy for overcoming the more debilitating portions of autism. The impact of autism on the family in bringing up the child is itself challenging but autie-parenting requires understanding, patience and self awareness.

Living with a brother or sister on the autism spectrum adds more significant and unique experiences to that relationship. Throughout numerous accounts of parents and siblings of children with disabilities, it becomes very clear; when a child in the family has disability it affects the whole family. Also clear is that each family member can be both strengthened and stressed from this situation. The degree of these conflicting effects seem to vary from family to family and person to person.

The impact of autism on the family affects siblings in those brothers and sisters of autistic children often face embarrassment among their friends and peers. Also, they may sometimes start envying of the amount of time their parents spend with their brother or sister. On the flip side, some children may develop strong protective feelings about their autistic siblings and get involved in their development. Though limited research has been done, a child‘s response to growing up with a brother or sister with a disability is influenced by many factors such as age, temperament, personality, birth order, gender, parental attitudes & modeling, and informal & formal supports and recourses available. Certainly parents have little control over many of these factors. Research by Debra Lobato found that siblings describing their own experiences consistently mentioned their parents reactions, acceptance and adjustments as the most significant influence of their experience of having a brother or sister with a disability. Positive outcomes that siblings frequently mention are learning patience, tolerance & compassion, and having opportunity to handle difficult situations. These opportunities also taught them confidence when facing other difficult challenges.

Myths & Facts about Autism

MYTH: Children and adults with autism spectrum disorders do not care about others.

FACT: Children and adults with an ASD often care deeply but lack the ability to spontaneously develop empathic and socially connected typical behavior.

MYTH: Children and adults with autism spectrum disorders prefer to be alone.

FACT: Children and adults with an ASD often want to socially interact but lack the ability to spontaneously develop effective social interaction skills.

MYTH: Children and adults with an ASD cannot learn social skills.

FACT: Children and adults with autism spectrum disorders can learn social skills if they receive individualized, specialized instruction and training. Social skills may not develop simply as the result of daily life experiences.

MYTH: Autism spectrum disorders are caused by poor parenting or parental behavior. FACT: Parents do not and cannot cause autism spectrum disorders. Although the multiple causes of all autism spectrum disorders are not known, it IS known that parental behavior before, during and after pregnancy does not cause autism spectrum disorders to develop.

MYTH: Autism spectrum disorders are not increasing in incidence. They are just being better diagnosed, and diagnosed earlier so the numbers are increasing.

FACT: Autism spectrum disorders are increasing across the globe at an alarming rate. Some states are considered to be in an autism epidemic. Many states experienced a 500-1000% increase in the past few years. No one knows the cause or causes for the increase. Better and earlier diagnosis can only account for a fraction of the current increases in numbers.

MYTH: ASD is a behavioral/emotional/mental health disorder.

FACT: Autism related disorders are developmental disabilities and neuro-biological disorders. These disorders manifest in early childhood (usually before the age of three or four) and are likely to last the lifetime of the person.

MYTH: People with autism spectrum disorders cannot have successful lives as contributing members of society.

FACT: Many people with autism spectrum disorders are being successful living and working and are contributing to the well being of others in their communities. This is most likely to happen when appropriate services are delivered during the child's free, appropriate, public education years.

MYTH: Autism spectrum disorders get worse as children get older.

FACT: Autism spectrum disorders are not degenerative. Children and adults with autism should continuously improve.* They are most likely to improve with specialized, individualized services and opportunities for supported inclusion. If they are not improving, make changes in service delivery.

MYTH: Autism spectrum disorders do not run in families.

FACT: More families are experiencing multiple members with an ASD than ever before. In some families, parents with an ASD were misdiagnosed or never diagnosed. In some families, many or all siblings are in the autism spectrum. Most often, one child with autism is born into families who do not have other family members with an autism spectrum disorder.

MYTH: All people with an autism spectrum disorder have "savant skills", like Dustin Hoffman's character in "Rain Man".

FACT: Most people with autism spectrum disorders do not have any special savant skills. Some have "splinter skills", areas of high performance that are not consistent with other skill levels.

MYTH: It is better to "wait and see" if a child does better rather than refer the child for a diagnostic assessment.

FACT: The earlier autism spectrum disorders are diagnosed and treated, the better. Outcomes for children's lives are significantly improved with early diagnosis and treatment. When in doubt, refer, do not wait.

MYTH: Autism spectrum disorders are something to be hidden. Other students should not know about the presence of an ASD in a classmate. If you do not tell the other children, they will not know that something is "wrong" with the student with an ASD.

FACT: Students need to know when their classmates have a developmental disability that is likely to affect interactions and learning. Students as young as five years old are able to identify differences in their peers. When students are not given appropriate information, they are likely to draw the wrong conclusions, based on their very limited experiences. Confidentiality rules must be taken into consideration and parental approval sought to teach peers how to understand and interact successfully with children with ASD.

MYTH: Certain intensive, behavioral based programs "cure" autism spectrum disorders if they are delivered at the right age and intensity.

FACT: There is no cure for autism spectrum disorders. Early behavior-based interventions have positive effects on some children with autism and less note-worthy effects on other children. Early services need to be based on individual children's needs and learning styles, not based on programs being sold as "cures" for every child with ASD. Services for adults with the features of autism need to be carefully individualized to the adult.

MYTH: Children and adults with autism spectrum disorders are very similar to one another. FACT: Although all children and adults with autism spectrum disorders have three diagnostic features in common, each child with an ASD is a unique individual. People with autism spectrum disorders differ as much from one another as do all people.

MYTH: Children and adults with autism spectrum disorders do not interact very much. They do not have good eye contact. They do not speak well. They are not very bright.

FACT: Children and adults with autism spectrum disorders may speak and/or interact with others. They may have good eye contact. They may be verbal or non-verbal. They may be very bright, of average intelligence or have cognitive deficits.

MYTH: The best place to educate a child or adult with an autism spectrum disorder is in a separate program designed for children or adults with autism.

FACT: Educational and adult services delivered to a people with ASD must be specifically designed for each person. Many people with ASD do the best when their services are individualized to them, not designed to be the same for a whole group. Remember that the "I" in IEP or IHP stands for "individualized." (The outcome for education for all children is to be able to belong to the community and contribute. These goals are often best met when the child with an ASD is educated in a community school with access to the typical children who will become the community of the future.)

MYTH: If you have an autism disorder, you will not have any other disorder.

FACT: Autism Spectrum Disorders can co-occur with any other disorders. It is common to find a person with ASD who also has any of the following: Down Syndrome, cerebral palsy, cognitive impairments, deafness, blindness, and medical or seizure disorders.

MYTH: It is very hard to know if a person with other disabilities has an autism spectrum disorder.

FACT: Autism is diagnosed by looking at the behavior of the individual. If the individual displays specific features of autism, then they may have autism. If you have concerns, an assessment should be completed.

Possible features of autism (summarized) include:

•  Qualitative differences in reciprocal social interaction (inability to easily create and sustain relationships)

•   Qualitative differences in BOTH verbal and non-verbal communication (not using and responding to communication signals in a typical way)

•  Restricted, repetitive and stereotypic patterns of interests, behavior and activities.

Onset of these features early in life usually by age 4.

Chapter 3: Importance of Understanding Autism by Siblings

Raising a child with autism places some extraordinary demands on parents as individuals and on the family as a whole. Prime among these demands is the lack of enough hours in the day to do all one wishes. The time involved in meeting the needs of a family member with autism may leave parents with little time for their other children.

Many parents indicate that even as they do all they can for their child with autism, they are always struggling with how best to respond to the needs of the family as a whole. They say that although their own life as an individual may be put "on hold" and a couple may share an understanding of the need to make sacrifices on behalf of their child with autism, few parents are willing to make that same demand of other children in the family. As a result, there is a continual tension between the needs of the child with autism and the other children.

There are special demands on siblings, and learning how to manage these demands will make their childhood easier and will teach them skills that will make them more effective and resilient adults. The most important teachers of these coping skills are a child's mother and father. The gifts we give to our youngsters in childhood will serve them immediately, and in all the years ahead.

Research by Susan McHale and colleagues found that siblings without disabilities viewed their relationship with their brother or sister with autism as positive when:

1)  They had an understanding of the sibling‘s disability;

2)  They had well-developed coping abilities; and

3)    They experienced positive responses from parents and peers toward the sibling with autism

Some siblings have negative experiences when their brother or sister has ASD. Anxiety, anger, jealousy, embarrassment, loss, and loneliness are all emotions that children will likely experience. Because of the nature of ASD s there are barriers to the sibling bond that can cause additional stress.

Communication and play can be difficult between siblings when one has ASD. Often the sibling without the disability is asked to assume, or may on their own feel obligated

to assume, the role of caretaker. These issues should be addressed proactively. Siblings are members of the family who need information, reassurance and coping strategies just as parents do.

Siblings have a unique bond with each other, which is usually life long. Having a sibling with a disability impacts this bond and will impact each sibling differently.

As a parent of a child with ASD , we can directly influence and support positive relationships for siblings. .

Each family is unique. Some family structures include single parents, multi-generational households, and households with other significant stressors including more than one member with a disability. Each family has its own beliefs, values, and needs. But regardless of family circumstances, the suggestions discussed here are supportive strategies to consider when assisting siblings in coping with a brother or sister on the autism spectrum. As I discussed, parent‘s role is very important, so in the next chapter I am explaining the tips to understand sibling‘s needs.

¹Referance: ¹ http://www.facebook.com/pages/siblings-of-autistic-children/179729994860

Chapter 4: Tips for parents to Understand Siblings needs

The most important teachers of these coping skills are a child‘s mother and father. So parents should understand about the factors for helping and supporting siblings of autistic child.

Following are the details which a parent should keep in mind :

Sources of Stress for Siblings

There are also potential sources of stress for siblings. Not all siblings will experience these issues, but here are some to be aware of:

·         Embarrassment around peers; jealousy regarding amount of time parents spend with their brother/sister

·         Frustration over not being able to engage or get a response from their brother/sister

·         Being the target of aggressive behaviors

·         Trying to make up for the deficits of their brother/sister

·         Concern regarding their parents stress and grief

·         Concern over their role in future care giving

Many of the suggestions provided here are things that parents can do within the family to help a child understand what autism is all about, to improve the interactions among the children in the family, and to ensure that brothers and sisters grow up feeling they have benefited from the love and attention we all need.

When a child has autism, most of the family‘s energy and resources go towards that child. Siblings carry their own special burdens as they experience all the hardships and stress attendant with autism, yet may feel they get less of their parents‘ attention. As discussed earlier in introduction part, that once sibling told his parent that he also want to become Autistic. More is expected of them than their sibling and they can experience this to be elementally unfair. They are party to people‘s hostile reactions when their brother or sister causes a scene in public and may resent the negative attention and even feel embarrassed or pained. So when the brother causes a scene, they must be upset, then the parent should tell them that we are also upset instead of scolding them. Then explain them that what we can do to adjust with that.

Parents should give their weight-bearing child the chance to express what it‘s like for them to have a brother or sister with autism. These siblings often hide their concerns and become the overachiever or the ―easy‖ child who harbors feelings of invisibility within the family. There is a danger that just like other caregivers who sacrifice too much, they may be giving up their childhood or missing opportunities to just be a kid. Making special one-to-one time expressly for your neurotypical child goes a long way towards letting them know that they are not losing out to the more needy brother or sister.

Siblings have a huge influence on children with autism. In fact, a groundbreaking study published in the latest edition of the Journal of Child Psychology and Psychiatry suggests that the influence of siblings actually determines the social behavior of children with autism. Children with autism who have younger siblings demonstrate a significant advance between the ages of three-to-five years in ―theory of mind,‖ or the ability to perceive that everyone has their own intentions, beliefs, desires and emotions. Normally, even the highest-functioning child does not score well in theory of mind before age thirteen, yet these very young children excelled. Unsurprisingly, siblings of children with autism are often deeply compassionate and wise beyond their years.

Clearly, siblings of children on the autism spectrum have a special role to play within the family and community. As such, extra care needs to be taken to honor and support them. Towards that end, many organizations have started groups expressly for siblings of children with autism.

Developmental Stages

Depending on the sibling‘s developmental stage or level of understanding, his or her concerns are likely to focus on the cause of their brother or sister‘s disorder, their brother or sister‘s thoughts and feelings, whether or not he or she will get better, what is expected of them as a sibling, treatment and supports, and what the future holds for everyone involved.

UNDERSTANDING AUTISM FROM SIBLING’S PERSPECTIVE
Early Childhood
·         Autism is understood in terms of isolated behaviors that are specific, observable and concrete (i.e., understanding is based on what the sibling sees rather than on logic) ·         Believes ―illness‖ or disability can be almost magically transmitted ·         The sibling has not yet devised logical strategies to relate observations and does not yet have the capacity to reason or understand on an abstract level what ―autism‖ means or what the related implications may be ·         Focus on concrete strategies and simple explanations that are specific, factual, and concrete (e.g., if the child is scared by tantrum behaviors, remove him/her from the immediate area and provide reassurance and comfort; explain that brother Billy waves his hands because he is excited)	·         Will notice differences between self and brother or sister but expects typical sibling interactions and relationships ·         May be fearful of unpredictable behaviors (e.g., fearful for own safety, fear possessions will be taken or destroyed) ·         May take on caregiver or teacher role ·         May believe something is wrong with them since they feel they receive less parental/adult attention; may attempt to become the ―perfect‖ child ·         The sibling is unable to articulate his/her feelings and may do so using behavior ·         May regress or mimic his/her brother or sister‘s behaviors in order to gain the same attention ·         May develop jealousy and resentment toward parent for giving more attention to brother or sister, leading to feelings of rejection
Middle Childhood
·         Autism is understood in terms of physical events; the concept of ―contamination‖ results in the sibling understanding ―illness‖ or disorder as being transmitted through physical contact ·         The sibling is developing the ability to draw meaningful connections between current and past experiences and consider the connection between multiple symptoms, behaviors and/or events; develops understanding that the disorder is enduring ·         However, understanding may be based on mistaken assumptions and ―magical thinking‖ (e.g., the sibling might believe that Billy‘s autism came from getting sick, because he once heard the disorder described as an illness) ·         The  sibling is  not  yet  able  to  consider ―possibilities‖ or implications of his brother or sister‘s disorder (e.g., parents may assume the sibling understands that the family cannot attend the parade due to the sister or brother‘s inability to sit and attend, but the sibling may not yet have the cognitive abilities to relate the two) ·         The sibling is able to understand concrete definitions of their brother or sister‘s disorder and explanations of related needs described in familiar terms they understand; understands and becomes a ―storehouse‖ of ―facts‖	·         May worry that their brother or sister‘s ―illness‖ or disorder is contagious or can be ―caught‖; may believe that their ―bad‖ behavior or thoughts resulted in their brother or sister‘s ―illness‖ or disorder ·         May feel guilt for having negative feelings toward sister or brother; May feel ―survivor‘s guilt‖ ·         May feel hurt or take brother or sister‘s behaviors personally ·         Develops   awareness   of   parents   as ―flawed‖ and may be critical of their efforts in addressing both their and their brother or sister‘s needs ·         Is becoming aware of differences among people in the ―outside‖ world; may develop feelings of isolation and embarrassment or shame ·         May attempt to take on parental responsibilities and become over-protective of sister or brother leading to conflicts with peers ·         Continues to demonstrate own needs through behavior (e.g., demonstrating non-compliance, being overly well-behaved)
Adolescence/Young Adulthood
·         Autism   is   understood   in   terms   of ―physiology‖; the sibling has developed an abstract concept of ―illness‖ or disorder and views this in terms of a malfunctioning body part or system ·         The sibling can reason logically about past and future events and uses knowledge rather than perception to reason ·         The sibling can evaluate the impact of their brother or sister‘s disorder on situations that have not yet occurred ·         Understands and desires more detailed information and explanations regarding their brother or sister‘s specific disorder	·         May worry that brother or sister‘s disorder is hereditary ·         Wants to conform to peer group; may be embarrassed by brother or sister ·         Feels conflicted between desire for independence and for maintaining their special relationship ·         May resent the degree of responsibility taken on or imposed on them; may feel anger toward parents, professionals, sister or brother and self ·         Begins to worry about theirs and their brother or sister‘s future, even to the point of ―what if …‖, and questions their possible role in their sister or brother‘s future ·         Has concern regarding how others will treat and accept their brother or sister (e.g., social groups, dating, marriage) ·         May sacrifice own lives, dreams and goals to fulfill family responsibilities ·         May grieve the loss or absence of independence and the development of relationships (e.g., typical sibling relationships, friendships)

These are the sibling‘s feelings in each developmental stage. So parents must be aware of these feelings and encourage them to talk about these feelings.

When to “Tell”

In your eagerness to inform your child, don‘t make the mistake of giving too much information at one time. You have an entire childhood to help your child understand what he or she needs to know to feel confident of his/her factual information, to become accepting of themselves and their brother or sister, and to handle the curiosity and ignorance (whether intentional or accidental) that he or she is likely to encounter on the journey through childhood. However, open the door by mentioning the topic of autism from time to time and act on the following opportunities when they arise.

•         Transitional periods (e.g., when brother or sister enters a treatment program or new school)

•         When a brother or sister‘s report card or program report is sent home

•         Following an incident that has possibly upset the sibling

•         When the sibling first comes into contact with other children the same age as their brother or sister

•         During developmental and social transitions experienced by the sibling (e.g., reaching puberty, entering Junior High School, developing a new peer group)

•         When issues arise resulting in the sibling wanting specific information (e.g., brother or sister begins medication)

•         Watch for and respect signals indicating that the sibling has the information they need at that time (e.g., changing the subject, asking if you are ―done‖)

Children pick up from an early age that their brother or sister is different, even if they don't understand what actually is wrong. They also notice other people's reactions, especially their parents and grandparents, to him or her. They may be afraid of asking questions, in case they upset their parents even though they have plenty of questions. For example, they may be afraid that they too will 'catch' autism. These questions and worries will change as the child becomes older eg they may fear that when they have children themselves that their child may have autism. Whilst they may have a deep love for their sibling they may also harbour feelings of resentment at the amount of time their parents are spending with the child with autism, and feel that they are being treated unfairly. Feelings of anger, embarrassment and guilt are also normal, as is feeling very protective of their sibling (Anon, 1998). Of course, not all feelings are negative.

Especially for sisters who assume a greater mothering role than do brothers, this extra responsibility does not appear to contribute to poorer adjustment. Higher parental expectations, however, may fall on the lap of typically developing boys

Low levels of loneliness in the siblings of children with autism but also found loneliness to be related to a lack of social support from friends. Social support from classmates was also significantly correlated with academic problems. While collecting information from parents, I saw a parent with an autistic elder boy and younger sibling girl (normal child) . it was very difficult for the parent to bring up those children. The young girl adjusted a lot in the family by without creating issues. She was very silent in nature and later diagnosed with dyslexia. Now what I understood is that the parent didn‘t understand the feelings of the younger child. When they started understanding it was too late. So I think this chapter will help parents to understand sibling‘s needs.

Reference² : ² http://www.autism-society.org/living-with -autism/family-issus/siblings.html

Chapter 5: Challenges that affect siblings of special needs kids & solutions

Here are some of the issues/questions faced by the parents by the siblings of Autistic child. I discussed with experts about this problem and they gave solution for these questions which are as follows.

Challenge #1: "Why won't he play with me?"

For younger siblings of autistic children, one of their first doses of reality usually comes when their older brother or sister won't play. "The child on the [autism] spectrum may seem indifferent or have a meltdown when the sibling tries to interact,".

Seven-year-old Adam, whose autistic brother Jacob is 11, says, "I can't really play games with Jacob like I can with my cousin Eric [also 11]. Jacob likes to play games on the computer — but by himself, not with me. He gets too angry if he loses and then doesn't want to play.

Solution: Find common ground

Parents can start by telling the typical sibling that his brother or sister "is doing the best he can, and here are some things you can do with him," "Maybe in the future he'll be able to learn to play with you in other ways, but right now this is what he can do.Find ways in which the siblings can relate [or] share an interest." That can be something very simple

Tickling is a good way to bond with a child who likes tickling, and for them to show affection back by laughing and wanting it again.

If the autistic child is hyperactive, ask sibling to do more physical outdoor activities like jumping, running etc

Challenge #2: "It's not fair!"

Every parent has heard his or her child say, "It's not fair!" But for families with autistic and typical siblings, "not fair" is the reality, when it comes to one child being treated differently from the other. Thomas has one autistic child, Charlie, 13, and one typical child, Alex, 15, Thomas recalls when he and his wife attended an important fund-raiser for Charlie three years ago, on the same day Alex rode in an annual bike race. "Alex won the race for his age group and was really upset when we were not there to greet him at the finish line," says Bounds. "As much as you try to balance schedules, as parents of an autistic child, you have to basically accept that you are going to have moments when you feel you have cheated your other children, and those moments are awful."

Solution: Create special time

Parents to set aside alone-time with their typical kids every week. "Private time can even [include] riding in the car to pick up the laundry, For single parents, do the best we can with the time we have. Like taking for shopping. For younger siblings, there should a separate dedicated time allocated for playing & talking with them.

Challenge #3: "I'm scared!"

Some autistic children are aggressive, which can be scary and dangerous, especially for younger kids. And parents can't possibly keep an eye on their kids every second Even a kid who isn't aggressive but is twice the size of sibling, often hugs tight. Very tight Around the neck.

Solution: Find a safe haven

"I tell parents to have a 'safe place,' usually the child's room, where the typical child can go while an adult handles the behavior problem, "Then, as soon as they can, the parents should comfort the typical child and help him or her understand what happened."

Parents should develop an "intervention plan" to teach the child with autism alternate behaviors — such as asking to be left alone, or using words, cards or a special gesture — when he or she feels upset. "Kids with autism can learn to go their room, sit in a beanbag chair, or do something else that helps them calm themselves,"

Challenge #4: "He's so embarrassing!"

It's common for siblings to feel embarrassed by their autistic brother or sister's behavior in public, or to be reluctant to bring their friends home., 21, year old sibling says it can be difficult introducing her autistic brother, to her friends: because he may behave like a 5 year old boy"

Solution: Encourage honesty — and laugh

Make the sibling aware that his brother has some special needs and give them proper information. Make them understand that everybody learns differently

Challenge #5: "I feel like the parent."

Some siblings often feel like parents. These siblings are so stressed out as the third parent in the house. Some sibling will complain Even though I'm four years younger, it places me in the position of being the older brother."

Solution: Let sibs be children too

"It's a challenge for children to feel that sense of responsibility for their sibling, "A wise parent works hard to temper that and to make the responsibilities fitting to the age of the siblings. An older sister can keep her brother entertained for half an hour because an older sister would typically do that to help out — but she's not a parent."

For young siblings, counseling them: "'It's wonderful to care about your brother, but you're my little boy too. Because your brother has trouble learning sometimes, he might need help from you, but you're not his mommy or daddy. We will take care of him when he needs help.' That kind of message reaffirms one's love and lifts that burden."

Challenge #6: The holidays

"Attending loud, busy social gatherings with new sights, sounds, smells, intrusive relatives and strange places overwhelms the best of us, let alone those with sensitive sensory systems," "Of course, when the child gets overwhelmed and melts down, so do the siblings and parents."

"In short, holidays suck, especially the ones you spend outside your own home,". "They're full of the most dreaded thing in an autistic life — unstructured time. People get together with relatives and friends and talk — which is sort of hard to do when your child has your sister-in-law's cat by the throat and is about to put him in the food processor."

Solution: Ask family members to help

Parents should "create a rotating team of adults. Each person spends a half-hour with the child, so that parents and siblings aren't trapped, and the child doesn't have to be exposed to the chaos of the party. Cousins and aunts can take a turn."

Siblings, however, should be spared. "The typically developing kid wants the holiday to come. She's off from school, she's getting her present and she can't really enjoy that" if she's expected to take care of her autistic brother or sister,

Challenge #7: In adulthood, the sibs will become "parents"

Someday, inevitably, the sibling of an autistic child will most likely take on the role of guardian and advocate. "You're basically at some point going to be their parent,". "Anyone I want to marry has to take that into account. In some ways you kind of feel like you already have a kid. ... For me, it's kind of a deal-breaker when someone can't really get along with my brother. He's such a big part of my life."

Solution: Discuss future plans with adult children

Parents should talk about financial plans and any care arrangements that have been made, once typical siblings are old enough. But this isn't a discussion to initiate with younger children — unless they bring the topic up on their own.

³Referance :³ Information from Sharbani Mallik, Dr.Shilpa Rao, Dr.Shobha Srinath

Chapter 6: Strategies for Developing Positive Relationships

Ways to Divide Your Time

·         Do Things As A Family And Separately

o    Sibling without autism has a school concert and we know the sibling with autism will be a disruption. Do not bring the sibling with autism. Sibling

without autism needs a chance shine.

o    Go camping as a family

·         Give Each Child Separate Time With Mom And Dad

o    Dad takes his daughter to the hardware store to pick up a tool

o    Both parents take turns putting a different child to bed each night

·         Private Time

o    Time alone is also important for the sibling without autism. They should have time where they take part in their own interest, daydream and to be a kid.

·         Sharing the Load and Special Moments

o    Divide up Household Workload

o    Give each member of the household chores and this includes the child with autism. Remember that chores should be divided up according to

developmental ages.

o    Use Resources to Give Yourself a Break

o    Close friends and extended family members

o    Other families who have children with autism

o    Formal support networks (e.g., respite, counseling)

o    Let Everyone Know They Are Special

o    Take time to tell each other what they‘ve done well, praise them, give hugs and kisses. This should include all members of the family including yourself, so let family members know when you need a hug.

o    Laugh Together

o    Autism is a serious disorder and can be very trying on a family. The family will come to a place where they gain some perspective and when that happens it is important to regain a sense of humor and laugh about those embarrassing moments that autism bring. Remember laughter relieves tension and it allows you all to have fun together.

Chapter 7: Activities to Encourage Communication for siblings

When I was discussing with parents, all parents told that their normal children are not communicating about their feelings. When they are very upset then they will say something abruptly. I am including the following activities to encourage communication for siblings.

Feelings Box

Find a box with a lid and cut a hole in the top. Leave a pad and pencil near by. On the pad siblings and parents can write unspoken anger, sadness, confusion or happy moments they would like to share about their sibling or child with autism. Make time when the notes can be shared and discussed.

Scrap Booking

With help a child can create a book by cutting pictures out of a magazine and dictating a text, which summarizes their feelings about their sibling.

Puppet Plays

Using puppets, dolls or other toys children can learn about autism or deal with their emotions around their sibling with autism through role-play. For example a child who is upset by their sibling who throws tantrums may find it helpful to act out the scenario and see how the situation is resolved by the parent puppet.

Journaling

An older child can use a journal to express all their feeling (e.g., positive, negative, angry and confused). The journal allows the sibling to engage in self-reflection and gain strength and wisdom. (You can provide your child with a book but never insist that he or she write in it!)

Favourite Things

Take time to share your favourite things about your child with autism with siblings and have them share with you as well.

Together Time

Brainstorm activities together that the sibling can enjoy with their brother or sister who has autism (e.g., shopping, snack, bowling). I am sure these activities help parents to understand sibling‘s needs.

Super Parent – Exit Stage Left

No one knows all the answers and it is not essential that your child view you as ―all knowing‖. Siblings need a realistic perspective in which they see Mom and Dad as people who are able to cope with problems in spite of difficulties they may face. This provides the sibling with a role model to refer to as they develop, rather than a superhero they could never live up to!

⁴Reference : ⁴ Barrett,K 1993; Brill,M.T(2001); Cunningham, Alaxias(2001); Harris, Sandra(1994); Galsberg, Beth A(2000); La porte, Jennie(2002); Meyer, Donald(1994); Powell, Thomas H, Abrenhold Ogle, Pegge(1985); Powers, Michael D(1989); Siegel, Bryna(1996)

Chapter 8: 12 important needs of siblings and tips to address these needs

1.                  SIBLINGS NEED COMMUNICATION THAT IS OPEN, HONEST, DEVELOPMENTALLY APPROPRIATE, AND ONGOING. Parents may need to deal with their own thoughts and feelings before they can effectively share information with siblings. Children may show their stress through their withdrawal or through inappropriate behaviors. Siblings may be reluctant to ask questions due to not knowing what to ask or out of fear of hurting the parent. While doing research on siblings, Sandra Harris found that developmentally appropriate information can buffer the negative effects of a potentially stressful event (Harris, 1994).

2.                  SIBLINGS NEED DEVELOPMENTALLY APPROPRIATE AND ONGOING INFORMATION ABOUT THEIR SIBLINGS‘ ASD. Anxiety is most frequently the result of lack of information. Without information about a siblings‘ disability, younger children may worry about ―catching‖ the disability and/or whether they caused it. The young child will only be able to understand specific traits that they can see, like the fact that the sibling does not talk or likes to line up their toys.

3.                  SIBLINGS NEED PARENTAL ATTENTION THAT IS CONSISTENT, INDIVIDUALIZED, AND CELEBRATES THEIR UNIQUENESS. Many families make a major effort to praise and reward the child with the disability for each step of progress. This same effort should be considered for the siblings. Self-esteem is tied to this positive recognition by parents. Remember to celebrate everyone‘s achievements as special.

4.                  SIBLINGS NEED TIME WITH A PARENT THAT IS SPECIFICALLY FOR THEM. SCHEDULE SPECIAL TIME WITH THE SIBLING ON A REGULAR BASIS. Time with the sibling can be done in various ways such as a 10 minuteactivity before bed or a longer period several times a week. The important thing is to schedule specific c ―alone‖ time with a parent that siblings can count on.

5.                  SIBLINGS NEED TO LEARN INTERACTION SKILLS WITH THEIR BROTHER OR SISTER WITH ASD. Sandra Harris & Beth Glasberg (2003) offer guidelines for teaching siblings play skills to interact successfully with their brother or sister with ASD. Go slow and praise the sibling. Toys and activities should be age appropriate, hold both children‘s interest and require interaction.

Teach siblings to give instructions as well as prompts and praise to their brother or sister (Harris & Glasberg, 2003).

6.                  SIBLINGS NEED CHOICES ABOUT HOW INVOLVED THEY ARE WITH THEIR BROTHER OR SISTER. Be reasonable in your expectations of siblings. Most siblings are given some responsibility for their brother or sister with a disability. Show siblings you respect their need for private time and space.

7.                  SIBLINGS NEED TO FEEL THAT THEY AND THEIR BELONGINGS ARE SAFE FROM THEIR BROTHER OR SISTER WITH AUTISM. Some children with ASD can be destructive and hard to redirect. They can also be quick to push, bite, or engage in other challenging behaviors with the sibling as a target. Siblings must be taught how to respond in these situations. Parents should make every effort to allow siblings a safe space for important items and a safe retreat from their siblings‘ aggressive behaviors.

8.                  SIBLINGS NEED TO FEEL THAT THEIR BROTHER OR SISTER IS BEING

TREATED AS ―NORMAL‖ AS POSSIBLE. Explain differential treatment and expectations that apply to the child with a disability. As they mature, siblings can better understand and accept the modifications and allowances made for the brother or sister with a disability. Make each child‘s responsibilities and privileges consistent and dependent on ability. Be careful not to underestimate the ability of the child with ASD.

9.                  SIBLINGS NEED TIME TO WORK THROUGH THEIR FEELINGS WITH PATIENCE, UNDERSTANDING, AND GUIDANCE FROM THEIR PARENT(S) AND OR A PROFESSIONAL, IF APPROPRIATE. Listen and acknowledge what is being said. Validate the sibling‘s feelings, both positive and negative, as normal and acceptable. Sharing your positive and negative emotions appropriately is also important. Remember parents are important models of behavior. Help siblings learn ways to cope with and manage their emotions.

10.              SIBLINGS  NEED  OPPORTUNITIES  TO  EXPERIENCE  A  ―NORMAL‖

FAMILY LIFE AND ACTIVITIES. If needed, draw on resources in the community both informal and formal. Some families are uncomfortable in asking for help. For the sake of everyone in the family, find and use resources available such as respite care services and other community programs for persons with disabilities and their families. Most families would be overwhelmed without some breaks from the ongoing demands of caring for children with a disability. Siblings and parents need opportunities for activities where the focus of energy is not on the child with special needs.

11.              SIBLINGS NEED OPPORTUNITIES TO FEEL THAT THEY ARE NOT ALONE AND THAT OTHERS UNDERSTAND AND SHARE SOME OF THE SAME EXPERIENCES. Siblings need to know that others are growing up in similar family situations. Opportunities to meet other siblings and/or read about other siblings are very valuable. Some might benefit t from attending a sibling support group where they can talk about feelings and share a common understanding while also having opportunities for fun.

12.              SIBLINGS NEED TO LEARN STRATEGIES FOR DEALING WITH QUESTIONS AND COMMENTS FROM PEERS AND OTHERS IN THE COMMUNITY. Parents should help prepare siblings for possible reactions from others toward their brother or sister with a disability. Make sure the sibling has facts about ASDs. Discuss solutions to possible situations.

If we are addressing these needs, I am sure a sibling can understand about his brother or sister‘s disability.

Chapter 9: Conclusion

Common sense tells us and research supports the idea that children need to understand what autism is all about. The rule of thumb: Do it early and do it often! It is important that your children know about autism and that the information you give them is appropriate for their developmental age. From early childhood, they need explanations that help them understand the behaviors that are of concern to them. For the preschool, child this may be as simple as "Rick doesn't know how to talk," while for the adolescent, it may involve a conversation about the possible genetics of autism.

The key is to remember to adjust your information to your child's age and understanding. For example, very young children are mostly concerned about unusual behaviors that may frighten or puzzle them. An older child will have concerns of a more interpersonal nature, such as how to explain autism to his or her friends. For the adolescent, these concerns may shift to the long-range needs of their sibling with autism and the role they will play in future care. Every age has its needs, and your task is to listen carefully to your child's immediate concerns.

Another key to success is to remember that children need to be told about autism again and again as they grow up. Young children may use the words they hear us use, but not understand the full meaning of those words until they are much older. Don't be misled by a young child's vocabulary of words like "autism" or "discrete trial." That does not mean the terms have real meaning for him or her. Just as you would not expect an early conversation about the obvious physical differences between boys and girls to constitute a sufficient sex education for children 5 or 10 years later, similarly, you must explain again and again, in increasingly mature terms, what autism is all about.

There are activities that should be shared by the entire family and times that should not. Along with having regularly scheduled special times for each child, it is also important to remember that there will be some events when one child in the family deserves to be the focus of everyone's attention. Children have told us that it is sometimes frustrating to have to do everything with their brother or sister with autism. In fact, there may be times when it may not be fair to insist that he or she be included. For example, if your child with autism cannot sit still for a school play, then it may be better if he or she stayed home when your other child performs.

Sibling Groups and Other Resources

A problem frequently reported to clinicians by siblings is a sense of isolation. An ideal means of combating this isolation is to help the sibling connect with other siblings of children with autism. Peer support groups for siblings of children with autism and related disorders are becoming more available.

The Sibling Support Project of The Arc of the United States, based in Seattle, Washington, is one example. They offer a range of information on siblings of children with disabilities, including: reading lists for children and adults, information on local sibling group meetings, information on facilitating sibling discussion groups, or online resources.

Autism New Jersey, Inc. matches siblings with pen pals around the country as well as internationally.

Several online resources are also available.For example, a chat room for siblings of children with disabilities, called "SibChat," meets periodically. A final resource to consider for siblings, particularly for those who are experiencing difficulty in adapting to the disability, would be individual counseling. In India also we can try to buildup support services for siblings and parents. Some organizations now started working in that direction. The awareness about Autism and how to handle an autistic person can be spread through Siblings.

The upside of growing up with children with special health or developmental needs is that siblings are some of the most amazing, resilient people. They deserve our respect! In college, in relationships, in life, they bring their wealth of experience gained by living in this different situation. Siblings become more patient, dependable, and kind; all traits that are sorely lacking in many of our youth. It makes them stronger and more compassionate than their peers because special needs siblings have had some experiences that can, as a generalization, help them to be more mature and empathic. Empathy isn‘t something we teach our kids once and forget about it. It is something you continually must remind them about and you hope will stay with them all their lives. They do grow up with a different perspective despite occasional anger and resentment that is to be expected.

Parents must be sure siblings don‘t fall into the trap of being perpetual caretakers in relationships. They must not believe that they have to put themselves last all the time. This is an area where parents need to be good role models. Again, tough to do!

In my experience, I had faced issue with my elder child who is a sibling of my autistic child. The understanding on handling siblings really helped me to give a positive touch to our family life. But now also he is asking so many questions regarding this. Once my elder son happened to see other autistic children in the school and he was afraid and asked me that ―when my brother becomes big, I don‘t what him to be like those children―

This dissertation helped me to find solutions for these questions and strategies to make positive relationship. After doing these much research in this topic, what I understood is ― we should respect their feelings about these issues and give them their space and allow them to enjoy their life.

I am suggesting to parents that they should concentrate on the following Do‘s & Don‘ts.

Do’s and Don’ts

Do‘s	Don‘ts
·  Build +ve relationship between kids	·  Treat the sibling as care taker
·  Encourage turn taking play	·  Choose play according to our interest
·  Give more choice to the siblings in life.	·  Explaining  that  your  brother  will  get
Eg: while going out today in which mall	upset in that  mall  so that we can‘t  go
we will go, from which hotel we will eat	there.
·  In daily activities include half an hour,	·  Give more care for the disabled child
every family members should sit together	·  Amma is busy with another work so you
and share the feelings	should take care of your brother.
·  Give  time  for  the  siblings  to  do  their	·  Ask them to become a guardian
intresting  activities.  Eg:  watching  their
favorite channel, going out and play.
·  Explain them what you are planning for
the  disabled  child  after  our  lifes  when
they complete 15 or 16 years old.

While doing this dissertation, I noticed that after diagnosing Autism most of the parents were busy with their disabled children. And so sibling‘s needs were ignored. No one was discussing with their children about their siblings problem. Siblings understand the situation by themselves. Most of the parents told, that they are not comfortable to share the information about Autism to their normal children. But for the siblings, particularly who is experiencing difficulty in adapting to the disability needs individual counseling. So if the parents are not comfortable, then they can choose a child counselor. Please note that,

Counseling is not advising. It‘s sharing information. For helping parents I am providing information about child counselors available in Bangalore in the last page.

Most Siblings Cope Very Well

While growing up as the sibling of someone with autism can certainly be trying, most siblings cope very well. It is important to remember that while having a sibling with autism or any other disability is a challenge to a child, it is not an insurmountable obstacle. Most children handle the challenge effectively, and many of them respond with love, grace and humor far beyond their years. I am dedicating this dissertation to the parents of autistic child with siblings.

I recommend the special educators to provide clear understanding on this subject to the parents of autistic child whom they work with. While taking assessment please include questions about sleeping problems, eating problems, how mother is managing with siblings. As a special educator, we should make them understand the importance of siblings needs and help parents with these tips which I included in this dissertation. If the parent‘s family atmosphere is happy the mother can handle the child properly and then only the child will improve. So I think this dissertation will help the special educators to understand the impact of Autism in the families. All the families are suffering a lot so it‘s our duty to help them with correct suggestions and tips.

Bibliography

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·         Data provided by : Jenie Mathew, B.S.W, R.S.W Sylina leong, B.S.W, Sandra White, 3 A

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Child counselors in Bangalore

1.      Dr Yesheswini Kamaraju

2.      Dr.kalika

3.      Roopa child counseling service, Marthahalli

4.      Sahara counseling services, Domlur Layout

Comment received from - Rukmini Krishnaswamy

Spastic Society of Karnataka