LIVING WITH AUTISM
The demands of raising a child with autism are great, and families frequently experience high levels of stress. Recognizing and preparing yourself for the challenges that are in store will make a tremendous difference to all involved, including the parents, siblings, grandparents, extended family, and friends.

The uniqueness of each individual with autism makes the experience of raising a child with autism different for each family. But there are some consistent themes or issues that most families will want to be aware to be able to provide the best support to the individual and to family members.

The information below is by no means exhaustive, but it should help to equip families with some of the basic tools they may need to successfully raise a child with autism.

 

STRESS ON FAMILIES
Stress - something parents in general are all too familiar with. There is the physical stress from carpools, preparing meals, bathing, homework, shopping, and so on. This is compounded by such psychological stressors as parent-child conflicts, not having enough time to complete responsibilities and concern regarding a child's well-being. When a family has a child on the autism spectrum, unique stressors are added.

Sources of Stress for Parents
Deficits and Behaviors of Autism. Research indicates that parents of children with autism experience greater stress than parents of children with intellectual disabilities and Down Syndrome. (Holroyd & McArthur, 1976; Donovan, 1988). This may be a result of the exhibit. An individual with autism may not express their basic wants or needs in a manner that we would expect. Therefore, parents are left playing a guessing game. Is the child crying because he/she are thirsty, hungry, or sick? When a parent cannot determine their child's needs, both are left feeling frustrated. The child's frustration can lead to aggressive or self-injurious behaviors that threaten their safety and the safety of other family members (e.g. siblings). Stereotypic and compulsive behaviors concern parents since they appear peculiar and interfere with functioning and learning. If a child has deficits in social skills, such as the lack of appropriate play, stress may be increased for families; individuals lacking appropriate leisure skills often require constant structure of their time, a task not feasible to accomplish in the home environment.

Finally, many families struggle with the additional challenges of getting their child to sleep through the night or eat a wider variety of foods. All of these issues and behaviors are physically exhausting for families and emotionally draining. For families of children on the autism spectrum this can be a particular challenge. Scheduled dinner times may not be successful due to the child's inability to sit appropriately for extended periods of time. Bedtime routines can be interrupted by difficulties sleeping. Maladaptive behaviors may prevent families from attending events together. For example, Mom might have to stay home while Dad takes the sibling to their soccer game. Not being able to do things as a family can impact the marital relationship. In addition, spouses often cannot spend time alone due to their extreme parenting demands and the lack of qualified staff to watch a child with autism in their absence.

Reactions from Society and Feelings of Isolation. Taking an individual with autism out into the community can be a source of stress for parents. People may stare, make comments or fail to understand any mishaps or behaviors that may occur. For example, individuals with autism have been seen taking a stranger's food right off their plate. As a result of these potential experiences, families often feel uncomfortable taking their child to the homes of friends or relatives. This makes holidays an especially difficult time for these families. Feeling like they cannot socialize or relate to others, parents of children on the autism spectrum may experience a sense of isolation from their friends, relatives and community.

Concerns Over Future Caregiving. One of the most significant sources of stress is the concern regarding future caregiving. Parents know that they provide their child with exceptional care. They fear that no one will take care of their child like they do. There may also be no other family members willing or capable of accomplishing this task. Even though parents try to fight off thinking about the future, these thoughts and worries are still continually present.

Finances. Having a child on the autism spectrum can drain a family's resources due to expenses such as evaluations, home programs, and various therapies. The caregiving demands of raising a child with autism may lead one parent to give up his or her job, yet financial strains may be exacerbated by only having one income to support all of the families' needs.

Feelings of Grief. Parents of children with autism spectrum disorder are grieving the loss of the "typical" child that they expected to have. In addition, parents are grieving the loss of lifestyle that they expected for themselves and their family. The feelings of grief that parents experience can be an additional source of stress due its ongoing nature. Current theories of grief suggest that parents of children with developmental disabilities experience episodes of grief throughout the life cycle as different events (e.g., birthdays, holidays, unending caregiving) trigger grief reactions (Worthington, 1994). Experiencing "chronic sorrow" is a psychological stressor that can be frustrating, confusing and depressing.

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 caregiving


Sources of Stress for Grandparents
Like parents, grandparents can grieve over the loss of the "typical" grandchild they expected to have. In addition, grandparents are concerned about the stress and difficult situations they see their children experiencing.

Many grandparents want to help but they often face two obstacles. First, most of them do not have the training in behavior management that is required to handle behavioral episodes. They may offer advice related to their experiences, but these may not be successful for individuals with autism. This can cause parents to become frustrated when they perceive the grandparents as not understanding their situations. Second, grandparents may not be physically able to manage the behaviors of individuals with autism. Grandparents just want to play with their grandchildren and "spoil" them.

Unfortunately, at times it may seem that a diagnosis of an autism spectrum disorder gets in the way of these desires. In reality, through understanding, experience and acceptance many learn to relate to the child, understand their differences, celebrate their strengths and gifts, and gain insight into the unique situations involved with parenting a child with autism and find that children on the autism spectrum are just as easy to love and “spoil” as any other grandchild.

What Can Be Done To Address Family Stress
Luckily, family members can take action to address the stress that they experience. Accessing services or doing any additional tasks can be overwhelming, considering what parents are already dealing with on a daily basis.

However, remember that it is only by taking action that challenges can be tackled and progress toward solutions made. Below are some suggestions to get started with in enhancing family functioning.

Take Time For Yourself and Other Family Members.
In order to avoid burnout, parents must make time for themselves. Parents often respond to this suggestion by saying that they don't have any time to do that.

However, you must keep in mind is that even a few minutes a day can make a big difference. Some parents do such simple things for themselves such as taking the time to apply hand lotion or cook their favorite dinners to make themselves feel better. Parents, just like individuals with autism, need rewards in order to be motivated. Parents who have children on the autism spectrum have even more of a need to reward themselves, because parenting their child can be frustrating and stressful.

In addition to rewarding themselves, family members need to reward one another. Spouses need to acknowledge the hard work that each is achieving. Also remember to thank siblings for watching or helping out their brothers and sisters. It is also important that spouses try to spend some time alone. Again, the quantity of time is not as important as the quality. This may include watching television together when the children are asleep, going out to dinner, or meeting for lunch when the children are in school.

Families may also want to occasionally engage in activities without the individual with autism. This may include mom, dad and the siblings attending an amusement park together. Often families feel guilty not including the individual with autism, but everyone deserves to enjoy time together that is not threatened by the challenges of autism.

Network With Other Families Affected by Autism or Another Disability
It gives us comfort to know that we are not the only ones experiencing a particularly stressful situation. In addition, one can get the most useful advise from others facing similar challenges and using similar services and supports. Support groups for parents, siblings and grandparents are available through educational programs, parent resource centers, local chapters of the Autism Society of America and Developmental Disabilities Offices. In addition, there are now online supports available for family members. You can locate these sources of support and many other services in your area by using ASA’s on-line referral database, Autism Source, at http://www.autismsource.org/.

Other Strategies to Address Stress
When it comes to reducing stress, be creative. You may want to consider one or more of the following approaches:

Prayer
Exercise / yoga
Deep breathing / relaxation exercises / meditation
Writing in a journal
Keeping a daily schedule of things to accomplish
Joining others in advocacy efforts at the local, state or federal level
Individual, marital or family counseling
If you or a family member is exhibiting signs of stress, you need to take action. Even if it takes the last bit of energy you have left, getting assistance can only make things better. Yes, waiting lists, burdensome paperwork and bureaucracy can make accessing supports stressful but in the long run, it will be worth it.

Note: This section was contributed by Adrianne Horowitz, CSW, Director of Family Services for the Eden II Programs for Autistic Children.

 

SAFETY IN THE HOME
Most parents and caregivers would view safety as a significant concern regarding their children in the home environment. Modifications such as placing gates in stairwells and doorways, covering electrical outlets, and using childproof locks on cabinets are some of the things many parents do to ensure safety. In response to these concerns the Autism Society of America has partnered with law enforcement and a preparedness consultant to create Disaster Preparedness Tips and a Safe and Sound packet. The packet contains an Emergency Decal that can be placed on your door or automobile window and a companion piece called the "Personal Information Record".

For parents of "typical" children, such safety precautions are usually necessary for the first few years of childhood, after which the child develops, matures and no longer requires the use of modifications. However, for parents of children on the autism spectrum, it is sometimes a different story. There are a myriad of additional issues to consider when addressing the safety of the individual with autism, the family members, and the home environment - often throughout the life of the individual with ASD.

Consider the many behaviors an individual with autism may engage in that could be unsafe: climbing, throwing, breaking, jumping, peeling, cutting, pulling down, throwing utensils, plates and cups, sweeping items off surfaces, dumping drawers and bins, and climbing out of or breaking windows. Or consider what can happen when natural curiosity and household appliances converge: putting items in appliances, flushing things, touching burners, turning hot faucets, inserting items into electrical sockets, chewing on wires, and crawling in a washer or dryer. Finally, consider the potential dangers that can result from playing with matches, lighters or fire.

Often children with autism who display such behavioral concerns do not understand the ramifications of their actions, which, at best, can be bothersome and, at worst, can be devastatingly tragic. Therefore, it becomes incumbent upon the caregivers in the home to provide both a safe environment and ways to teach their children to be safe.

There are several environmental and safety modifications that can be made in the home as well as steps that can be taken to prevent unsafe or inappropriate behaviors. The following suggestions have been found to be helpful in preventing dangerous behaviors and ensuring a safer environment. The suggestions range from using locks for security or limiting access to the individual to labeling every functional item and area in the home with photographs or symbols to assist in communication.

Sometimes parents balk (initially) at the idea of having to place locks on doors or cabinets, having to place alarms outside a child's bedroom, or having to label the house with photos or cards. They often say: "This is not a classroom." However, your home is indeed a natural learning environment, just like a classroom.

Establish priority areas for modification. Modify the most important areas first - such as the individual's bedroom, bathroom, leisure areas, kitchen, and back yard - since these are the primary areas of interaction for many children. When getting started, think about the room(s) in which the child spends the most time; for some children it would be a recreation/ family room, for other children it might be the bedroom or kitchen. In addition, consider the behaviors to be modified and the relationship of those behaviors to the environment Behavior modification works to alter an individuals behavior through positive and negative reinforcement. Remember that behaviors always serve some purpose, and in order to alter a particular behavior it must first be understood. If the individual likes to put things in the toilet or run hot water in the bath, modifications should begin in the bathroom. If the child runs out of the house, modifications should begin with securing exterior doors with locks.

Arrange the furniture appropriately. Arrange the furniture in a way that "makes sense" for the activities the individual is expected to do. That is, if the individual will be doing "seated" activities, ensure that there are clear table surfaces and appropriate chairs. If the child frequently runs out of a room via a predictable path, arrange the furniture and close doors so that he or she is unable to escape. Limit the need for excessive movement and/or transition. Move furniture away from shelves or places where the child may climb. Keep furniture surfaces clear (if the individual is a "sweeper") and place items out of reach on shelves, in bins, or locked away. In addition, use gates or barriers to provide safety from falling down steps or to limit access to certain areas in the home.

Use locks where appropriate. It is important to place locks on exterior doors that provide entry or departure to and from the home. For individuals who run away or leave the home without supervision (also referred to as "elopement"), having locks on the doors can prevent them from leaving. Place locks on interior doors and cabinets where the individual should not have free access.

Some parents feel more secure when their child is locked into his or her bedroom at night to prevent "in the middle of the night" wandering. If you choose to put locks on the doors, use locks that you are able to open such as a lock with a keyhole/key, a hook-and-eye lock, or a slide-bolt. Some parents place the lock key above the door frame of the room to have quick and easy access. If a button-knob lock is used on the outside of the door, make sure that the child does not lock you into the room with him or her. It is imperative that you have immediate access to any room where the door is locked in the event of fire, or other emergency.

Regarding locks on cabinets and drawers, use safety locks (often plastic devices) to secure items that may be unsafe for the individual. Many parents place these locks on bathroom and kitchen cabinets to prevent access to items in the cabinets.

Safeguard your windows. If the child likes to climb out of windows, place locks on them. Hardware stores carry special locks for just this purpose. If the child breaks glass or pounds windows, replace the glass panes with Plexiglas to prevent injury. Some parents have had to also place wooden boards over windows to prevent injury or elopement.

Make electrical outlets, appliances safe. Cover or remove electrical outlets and access to electrical appliances. Use plastic knob covers {also available at hardware stores) for doors, faucets, ovens, and stove burners. Lock the door to the room or rooms with the washer or dryer, appliances or power tools to limit access. Ensure that all wiring for appliances and electronics is concealed in a way that the child cannot play with the wires. Individuals on the autism spectrum often have a curious interest in how things work but that can be coupled with a pervasive "unawareness" of dangerous situations - a potentially powerful combination when it comes to electrical materials.

Lock dangerous items away. Secure items that are dangerous if ingested, such as detergents, chemicals, cleaning supplies, pesticides, medications, and small items that a child may mouth or chew, It is easy for an individual with autism to confuse a bottle of yellow cleaning fluid with juice based upon appearance, or to pour / spill liquids out of any bottle (some of which may be poisonous or toxic), and pills that look like candy can easily be eaten by mistake. Place such items out of reach or in cabinets with locks. Keep the Poison Control phone number in a permanent place that is clearly in view.

Secure items/materials that are dangerous or unsafe if used without supervision, such as sharp objects/ utensils (scissors, knives, razor blades). When unsupervised, many children like to cut things (clothing, curtains, wires, books, etc.) into pieces with scissors or knives. If necessary, use scissors that have blunted ends (child-safety scissors), and be sure to provide supervision when involved in cutting activities. In addition, secure items that need to be limited (i.e., candy, Nintendo, lighters, matches, TV, DVD player, toilet tank covers) with a lock or ties.
Label everyday items. Place visual labels (symbols, photos, words, textures) on functional items, rooms, cabinets, drawers, bins, closets, and anything that has relevance for the child. By labeling the environment, a child with ASD may better understand what is expected and may be less likely to engage in undesirable behaviors. In addition, if the child understands the function of an item, piece of furniture, etc., he/she is more likely to use it for its intended purpose. For example, by placing visual labels on the bed for sleeping, the child may be less likely to view the bed as a trampoline. By placing labels on drawers and closets, it may reduce power struggles over being asked to put things away because the child will know where to put them.

Organize everyday items. Organize functional items in see-through plastic bins/boxes with visual labels (symbols, photos, words, textures) so the child can see and use the receptacles. Place the bins on shelves or in places that the child can easily see and access. Once again, the more organization, order and structure in the environment, the more likely it will reduce the frustration level of a child on the autism spectrum and the less likely he or she will be to engage in appropriate behaviors.

Institute appropriate seating. Ensuring that the individual is seated properly at a table or work station can help prevent behavioral concerns, such as throwing objects, knocking over furniture, self-stimulatory behaviors, and acts of aggression. For example, some children need to be seated in chairs with arms or a wrap-around style desk when doing work. Others may need to be seated in a place where they cannot easily escape from the table, such as against the wall or in a corner. In addition, a proper sitting posture (body at a right angle and feet flat on the floor) will help facilitate good learning and/or eating behaviors.

Use visual signs. Use dividers, tape boundaries, and signs as needed for setting expectations and limits. For example, the use of STOP signs on doors, drawers, furniture, and appliances has helped some children understand that these items/ areas are off limits. For children who climb on high surfaces or enter areas that they should not, STOP signs will let them know that what they are doing is dangerous. Using color tape to designate boundaries on carpets, floors, or walls can help to visually remind the child where their bodies need to remain.

Secure eating utensils and place settings. When using utensils during mealtimes, consider tying utensils to nylon string and attaching them to the chair or leg of the table,  this way if the child throws the utensils, they will remain attached to the string. There have been children who have "unintentionally" thrown forks across the table and injured other family members. If the child throws or sweeps plates, bowls, and cups, secure them with adhesive Velcro and attach them to a secure placement. Use plastic or rubber plates, bowls, and cups to prevent shattering of breakable items.

Safeguard bath items/toys. Consider keeping bath toys in a bag/bin away from the tub and unavailable until bathing/hair washing are competed. This will help the child focus on bathing and prevent power struggles while in the tub. You do not want a child flailing around while in a slippery bathtub since he or she or you could be injured. When the child is finished bathing/hair washing, you can then give access to tub toys. Keep bath items (soap, washcloth, shampoo, sponges, etc.) together in a plastic bin or rubber bag and accessible. Replace open-lip bottles with pump so the child will not empty or ingest the contents.

Remember fire safety. Regarding fire safety, it is important to have lighters and matches out of reach or locked up. Place safety covers over gas stoves and oven knobs so that a child cannot turn them on. Always supervise children closely when there is an active fire in the fireplace or when there is a barbecue with open flames. Many community fire departments can provide stickers (called tot finders) for bedroom windows of children, so that in the event of a fire, the firefighters can locate a child's bedroom quickly. While it may be difficult to teach an individual on the autism spectrum about the dangerous nature of fire, it may be possible to teach him or her about how to behave when it comes to fire safety.

Developing social stories (with photographs, pictures, words) about smoke detectors, fire drills, fire alarms, touching fire, etc., and reading the stories to the child on a regular basis, is the place to begin. [A social story is a short, personalized story that explains the subtle cues in social situations and breaks down a situation or task into easy-to-follow steps.] In addition to social stories, the use of visual (photos, pictures) rules can assist the child in understanding what they are not supposed to do and/ or what they are expected to do. For example, "no touching the oven burners" with a photograph of the over burners with a bright red "no" symbol or STOP sign over the photograph may visually depict the rule for the child.

Consider identification options. It is important that your child has proper identification in the event that he or she runs away or gets lost and is unable to communicate effectively. Once a child with ASD becomes mobile, he/she may decide to walk out of the home without supervision. Children on the autism spectrum often like to be outside and in motion, so leaving the home to play outside is common. Once outside of the home, the child is then vulnerable and may be unable to get home or communicate where they live.

If the child will tolerate wearing a medical ID bracelet or necklace, get one (they can be found your local drug store). However, many children with autism do not like to wear jewelry, so the next best option is to place iron-on labels into each garment. Some children can be taught to carry and provide an identification card from a wallet or fanny pack and can learn to show their identification cards if they are not able to verbalize the information to another person. Some parents have also used specially designed tracking devises, perimeter systems, or service dogs for children on the spectrum who are known to elope.

Introduce Intervention Techniques to Teach Safety. In addition to the physical modifications to your home, you will want to introduce behavior modification techniques to teach your child how to be safe and act appropriately. There are a myriad of augmentative behavioral interventions that can be employed to do this. Examples of these interventions would be:

Once general safety, good judgment, competence and understanding of what is expected can be demonstrated, many of the environmental modifications can be faded over time. Introducing the home modifications and intervention techniques mentioned above will not only help to keep your child and your family out of harms way, they will also help ensure that your child is ready and able to learn and, ultimately, better able to reach his or her full potential.

Resources Most of the items and products (safety knobs for appliances, locks, etc.) mentioned above, can be purchased from hardware stores, department stores, and children's stores in your community. You can also contact your fire department to see whether they have locator stickers or other materials to foster fire safety.

 

LIFE AFTER HIGH SCHOOL
One of the most challenging times for individuals with autism and their families is when they must transition from the security of federally-mandated services through the public school to the uncertainty of adult services. Questions about post-secondary education, vocational training and employment must be addressed. While entitlement to public education ends at 18, the IDEA requires that transition planning begin at 16, becoming a formal part of the student's IEP. Transition planning should involve the student, parents and members of the IEP team who work together to help the individual make decisions about his/her path.

Transition Planning

The school system can be the basis for your transition planning. A student receiving special education services in public schools has regular meetings with family and school staff to address the student's Individualized Education Program (IEP). Once a student is in high school, these meetings should begin to plan for the transition from high school to adult life. The federal law, Individuals with Disabilities Education Act (IDEA), requires that transition plans be included in a student's IEP by the time he or she is 16. IDEA defines transition services as a coordinated set of activities for a student that promotes movement from school to post-school activities, including:

The coordinated set of activities must be based on the individual student's needs, taking into account the student's preferences and interests; and include needed activities in the areas of:

Some states require transition planning to begin at an age younger than 16. Check with your state department of education to confirm the age your state requires transition planning and services to begin. It is important that families and schools start planning early to ease the transition for the person with autism and increase success and independence in adult life.

Individualized Transition Plan

A key term used when developing an individual's transition services is Individualized Transition Plan or ITP. This may be written as a specific area within the IEP or as a separate document that is also agreed upon by school officials and the parents. An article in Focus, a newsletter of the Autism Society of Northwest Ohio, "Transition Planning From School To Work" suggests four components of a transition plan:

  1. The plan, including goals and services, must be based on the individual needs, preferences, and skills of the person with autism
  2. Transition planning should be oriented to life after high school, not limited to what will be accomplished before leaving school
  3. There should be a master plan which includes long range goals and a coordinated set of activities for each
  4. The services provided should promote positive movement towards a life after school

Interagency collaboration is an important part of a student's transition IEP. A school system may work with agencies such as the local Department of Vocational Rehabilitation (VR), Social Security Administration (SSA), or independent and supported living centers. These agencies may provide training or direct services to assist the school with a student's transition. Parents should strongly encourage interagency collaboration as part of the IEP.

Thinking about Transition

When thinking about transition from high school, sometimes it is helpful to start the process with a list of questions to act as a springboard for discussion. Below we have provided such a list composed by a mother whose son has autism (Autism Advocate, March-April 1996, p. 16). Some parents use similar questions when preparing for an IEP meeting. Other families like to hold family meetings with siblings and the individual with autism so that they can all share in the planning:

Many people think of adulthood in terms of getting a job and living in a particular area, but having friends and a sense of belonging in a community are also important. To address these areas, we have added a few additional questions:

It is also important that the transition process involves taking action. After identifying areas of interests and setting goals, one must take some active steps to meet those goals. For example, a student with autism with particularly sharp computer skills is dismissed from school early a few days a week to work with an aide at a data processing office. This position was acquired through the vocation rehabilitation office, and they continue to provide needed support. Before beginning this job, the student was taught appropriate office social skills and important office procedures such as using a time clock.

Another student who prefers to be outdoors is more suited to work with a community clean-up project than in an office. Again, this emphasizes the need to develop a plan tailored to each individual's skills and preferences. Many professionals and families believe that three or four different experiences can be helpful in assessing a student's desires and capabilities while he is still in high school. The bottom line for all students is to prepare them for their lives after high school, whether that involves employment or further education.

The National Information Center for Children and Youth with Disabilities has a Transition Summary series that helps families and students with disabilities focus on taking definite steps toward a successful transition. We have adapted a portion of NICHCY Transition Summary, No. 7, September, 1991, below.

 

In Junior High School: Start Transition Planning

In High School: Define Career/Vocational Goals

If you have decided to pursue post-secondary education and training prior to employment, consider these suggestions:

After High School: Obtain Your Goals

The transition process is a complex one with many decisions to be made. A student's options after high school can be increased by a good transition plan during school. When a student is given the opportunity to experience different settings and develop work appropriate skills, he/she will be able to choose the best path. A good transition plan allows parents, school officials, and agency personnel to work together to make these opportunities available.

Many families across the U.S. find that there are shortages in services for adults on the autism spectrum once they have aged out of school. Click here to read A Call to Action - Position Paper on The National Crisis in Adult Services for Individuals with Autism: A Call to Action.

 

SIBLING ISSUES
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.

This section offers suggestions to parents about ways to help the other children in the family cope gracefully and effectively with the experience of having a brother or sister with autism. Research indicates that the majority of brothers and sisters of children with autism cope well with their experiences. That does not mean, however, that they do not encounter special challenges in learning how to deal with a sibling who has autism or a related disorder.

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 you give to your youngsters in childhood will serve them immediately, and in all the years ahead.

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 so much need.

Explaining Autism to Children

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 mislead 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 five years or 10 years later, similarly, you must explain again and again, in increasingly mature terms, what autism is all about.

Helping Your Children Form a Relationship

Because of the nature of autism, it is usually difficult for a young child to form a satisfying relationship with a brother or sister who has the disorder. For example, your child's attempts to play with his/her brother are probably rebuffed by his ignoring her, fall flat because of his lack of play skills, or end abruptly because his tantrums are frightening. How many of us would keep trying to form a friendship with someone who turned her back when we spoke to her, or, even worse, seemed angry when we approached?

It is not surprising that young children may become discouraged by the reactions they encounter and seek their playmates elsewhere.

The good news is that young children can be taught simple skills that will enable them to engage their brother or sister in playful interactions. Research has shown that siblings can learn basic teaching strategies to engage their brother or sister with autism. These skills included things like making sure they had their brother's attention, giving simple instructions, and praising good play. One research study showed that videotapes made before and after the children learned these skills showed in a very touching manner that, after training, they played together more and seemed much happier than they had been prior to training.

Special Times

Along with ensuring that the child with autism is a fully integrated member of the family; it is important to remember that other children in a family need their times to be special. Families are often urged to find some regular, separate time for the children in their family who do not have autism. It may be one evening a week, a Saturday morning, or even a few minutes at bedtime each night. If your child with autism has a home-based program or exhibits serious management problems, you will have neither the stamina nor the energy to give your other child exactly the same amount of attention. It is not necessary that everything in childhood be exactly the same. What is important is the opportunity to feel special to your parents and to feel that there is an overall atmosphere of equity in your home.

Not Everything as a Family

There are activities that should be shared by all the 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.

Adult Siblings

Being the brother or sister of a person with autism does not end with childhood. These are lifetime relationships that mature and grow over the years. The concerns of an adult sibling will be different from those of children. For the young adult, questions may focus on their own plans to have children and concern about whether there is a genetic component in the autism of their sibling. In some cases, young adults may also feel a keen sense of responsibility for their brother or sister with autism that makes it difficult for them to leave home and begin an independent life.

It is important that parents discuss with their adult children the expectations they have in caring for the person with autism, as well as reassuring them about the legitimacy of their assuming their own role as adults.

The questions of the role of the adult child become most acute as parents age and begin to anticipate the point when they will no longer have the stamina to continue to care for their child with autism. If the person with autism is not already living outside of the home, this may be a time when placement in a group home or supervised apartment become important. In those families where such care is necessary, adult children and parents must together address the question of who will assume guardianship for the person with autism when the parents die.

It is not easy for any of us to talk about our own death, and both you and your child may shy away from the conversation. Nonetheless, your adult children need to understand the financial plans you have made, the care arrangements in place, and your own expectations for them. Having these difficult conversations will ultimately be a gift to your adult children who will know that they can honor your wishes.

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. Their Web site address is: http://www.siblingsupport.org/

The New Jersey Center for Outreach and Services for the Autism Community (COSAC) matches siblings with pen pals around the country as well as internationally. 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.

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.

Note: The previous section was provided by Sandra Harris, Ph.D.,professor and dean at the Graduate School of Applied and Professional Psychology and Executive Director of the Douglass Developmental Disabilities Center at Rutgers University.

 

PLANNING FOR THE FUTURE
A 1996 survey conducted by the ICR Survey Research Group showed that at least one individual in 20 percent of U.S. households is a caregiver - either part-time or full-time. Planning for the future of people with disabilities is something they and their families/caregivers must tackle - and the sooner the better.

Whether the person with special needs is 4 or 40 years old, it is imperative that families create a plan. Despite the growing number of persons with developmental disabilities in this country, less than 20 percent of families have done any planning.

Whether people with disabilities function entirely on their own or need assistance, a written directive can provide instruction for daily care, as well as unexpected and sudden contingencies.

Family members/caregivers should discuss information regarding the needs and desires of people with disabilities and compose a directive document addressing the lifestyle, financial, legal, and government-benefit issues.

Most people realize they need to plan and want to do something, but they fail for a variety of reasons. Some believe the task is overwhelming - they don't know where to find qualified professionals who understand their needs and how to resolve their concerns. And, too, the cost of professional services can be prohibitive. Families are also concerned with privacy issues. How do they overcome these obstacles and begin planning for the future?

As families begin their plan, they should first identify the people that can assist in the planning process. This should include, when possible, the family, the person with a disability, an attorney, a financial advisor, caseworkers, medical practitioners, teachers, therapists, anyone involved in providing services, and a lifetime assistance planner to act as a "team" advisor to make sure that all parts of the plan are coordinated and complete.

The planning process that financial planner Barton Stevens, ChLAP, recommends addresses four key issues affecting the life of the person with special needs. They are:

  1. Lifestyle
  2. Legal
  3. Financial
  4. Government Benefits

Lifestyle. Lifestyle planning is where the family records what they want for the future of their loved one. This information is recorded in a document called the "Letter of Intent." Although not a legal document, it is as important as a Will and a Special Needs Trust. Lifestyle issues require decisions regarding where the person will live, continued education programs, employment, social activities, religious affiliation, medical care, behavior management, advocacy and/or guardianship, trustees, and final arrangements.

In addition, detailed instructions are provided for assisting the person with the typical activities of daily living such as bathing, dressing, feeding, and toileting. Perhaps the person has a special way of communicating that only the immediate family knows and understands. It is important that this information be included. Rather than write hundreds or thousands of words describing how to do these things, it is recommended that families videotape them performing the activities of daily living, communicating, and in different social settings such as the home, school, a day care center, and so on.

Imagine how much easier and less traumatic it will be for the person with special needs and the care providers if they have detailed instructions immediately available to them rather than having to figure things out on their own. What could take weeks or months to adjust to could be shortened to a few days. The ultimate goal is to make the transition from parental care to independent living, residency in a group home, or moving in with other family members as easy as possible, bearing in mind the comfort and security of the person.

Legal. Legal planning provides for the family to state their wishes as to the distribution of their assets and appointing executors to settle their estate. In conjunction with this, a trust is usually executed to provide professional money management, trustees, guardians, maintain government benefits, and protect the assets left for the individual.

The "Irrevocable" Special Needs Trust is the most commonly used document to provide, supplemental funds for the exclusive benefit of the person with a disability. The assets are not in the name of the person, so they will not cause the loss of SSI (Supplemental Security Income) health care benefits. This Trust has proven invaluable to families regardless of the size of their estate or the amount of assets they are leaving.

Financial. Financial planning is used to determine the supplemental needs of the person. First, a monthly budget is established based on today's needs while projecting for the future. Then, by using a reasonable rate of return on principal, the family identifies how much money is needed to fund the trust. In addition, the life expectancy of the person must be considered and then the need projected into the future using an inflation factor.

Once this is done, the family must now identify the resources to be used to fund the trust. They may include stocks, mutual funds, IRAs, 401(k)s, real estate, your home, life insurance, etc. Professional management for investing the assets may be done by the Trustee, or the Trustee may hire advisors.

Government Benefits. Government entitlements play a key role in the lives of many persons with special needs by providing cash and health care benefits under SSI (Supplemental Security Income), SSDI (Social Security Disability Insurance), Medicaid, and Medicare. A basic understanding of federal and state entitlement programs is essential in order to be sure that the person gets all that they are qualified to receive, and that assets received from family members through gifts, inheritance, and litigation do not result in the disqualification and termination of government benefits or the government claiming reimbursement for benefits provided from assets received by the person.

It should be clear that each of these issues is interrelated and requires they be coordinated in the planning process. Those persons who provide advice in one particular area should be made cognizant of what others are doing. This emphasizes the importance of an organized plan.

The result of a comprehensive plan should be that it: provides lifetime supervision and care; maintains government benefits; provides supplementary funds to help ensure a comfortable lifestyle; provides management of funds; provides dignified final arrangements; and avoids family conflict.

The 10-Step Process

In order to prepare a plan in a simple step-by-step procedure without feeling overwhelmed by the process, Barton Stevens recommends that families commit to know the 10 life planning steps. If these steps are followed, the family will create a directive that addresses the lifestyle and care needs of the person.

There are 10 steps you follow to help you create a directive that addresses the lifestyles and care needs of people with disabilities. The information recorded depends on the type and severity of the disability.

  1. Prepare a life plan. Decide what you want regarding residential needs, employment, education, social activities, medical and dental care, religion, and final arrangements.

  2. Write informational and instructional directives. Put your hopes and desires in a written document. Include information regarding care providers and assistants, attending physicians, dentists, medicine, functioning abilities, types of activities enjoyed, daily living skills, and rights and values. Make a videotape during daily activities such as bathing, dressing, eating, and recreation. A commentary accompanying the video is also useful.

  3. Decide on a type of supervision. Guardianship and conservatorship are legal appointments requiring court-ordered mandates. Individuals or institutions manage the estate of people judged incapable (not necessarily incompetent) of caring for their own affairs. Guardians and conservators are also responsible for the care and decisions made on behalf of people who are unable to care for themselves. In some states, guardians assist people and conservators manage the estate of individuals. Many parents who have kids with disabilities do not realize that when their children reach 18, adults may no longer have legal authority. Choose conservators/guardians for today and tomorrow. Select capable individuals in the even you become unable to make decisions in the future.

  4. Determine the cost. Make a list of current and anticipated monthly expenses. When you have established this amount, decide on a reasonable return on your investments, and calculate how much will be needed to provide enough funds to support his or her lifestyle. Don't forget to include disability income, Social Security, etc.

  5. Find resources. Possible resources to fund your plan include government benefits, family assistance, inheritances, savings, life insurance, and investments.

  6. Prepare legal documents. Choose a qualified attorney to assist in preparing wills, trusts, power of attorney, guardianship, living will, etc.

  7. Consider a "Special Needs Trust."  A Special Needs Trust holds assets for the benefit of people with disabilities and uses the income to provide for their supplemental needs. If drafted properly, assets are not considered income, so people do not jeopardize their Supplemental Security Income or Medicaid. And, too, they don't have to repay Medicaid for services received. Appoint a trustee and successor trustees (individuals or corporate entities, such as banks).

  8. Use a life-plan binder. Place all documents in a single binder and notify caregivers/family where they can find it.

  9. Hold a meeting. Give copies of relevant documents and instructions to family/caregivers. Review everyone's responsibilities.

  10. Review your plan. At least once a year, review and update the plan. Modify legal documents as necessary.

Once you have decided to prepare a plan, find someone to help you or hire a professional planner. Referral sources are available through governmental agencies, organizations, or local support groups. "'Who will care when you are no longer there?" is an overwhelming concern people with disabilities and their families must address. Solutions are available. The next step is up to you.

Note: The previous section was provided by Barton Y. Stevens, ChLAP, founder and Executive Director of Life Planning Services in Phoenix, AZ, who has been providing estate and financial planning services since 1972.