Autism is a term that refers to a collection of developmental disorders that affect the brain. This brain disorder affects a person’s ability to communicate, form relationships with others, and respond appropriately to the external world. People with autism have a tendency to have repetitive behaviors or interests and rigid patterns of thinking.
The severity of autism varies greatly. Some people with autism can function at a relatively high level, with speech and intelligence intact. Others have serious cognitive impairments and language delays; some never speak.
How can I help my other children form a relationship with their autistic sibling?
While relationships between an autistic sibling and a typically developed sibling are more difficult to establish, they can be every bit as loving and satisfying as those between two typical siblings. Children without a full appreciation of the sensitivities and limitations of an autistic sibling find it difficult to engage that sibling in conversation or play. The effects of being frightened, ignored, or rebuffed by the autistic sibling can impede a good relationship.
It is therefore not surprising that young children unfamiliar with how to speak or play with their autistic sibling may become discouraged by the reactions they encounter and seek their playmates elsewhere. Parents can encourage a good relationship between the siblings by teaching their typical children about autism and a few simple skills. Indeed, research has shown that not only can siblings learn these basic skills to engage their brother or sister with autism, but can improve their relationship and enjoy it.
To improve the relationship between the siblings, the typical siblings need to learn how autistic children are different from them. Their brother or sister may not enjoy being hugged or touched in a certain way. Loud voices or noises from toys or games may be painful or frightening. Overly complex games or games that depend too much on verbal communication may be inappropriate for the autistic sibling-although this is not the case for all autistic children. This is a trial-and-error process for the parents and the siblings. The learning process can take time and should be approached incrementally. Too much too soon may wear out the children and exhaust the patience of siblings and parents alike. When the typical child gains insight into the autistic sibling’s sensitivities and interest levels, the basis for better communication and play is established.
Some skills that the typical sibling can develop to better communicate with their autistic sibling are: Getting their attention: Autistic children may appear not to hear well because the focus of their interest is elsewhere. Before trying to engage the autistic sibling in play, the typical sibling should get their attention. This can include facing the child and getting them to make eye contact and respond in some way.
Simplifying tasks:When attempting to teach their autistic sibling a new game or athletic skill, it is helpful to break that skill down into a series of simple steps. Each step should be explained clearly and demonstrated if possible.
Giving instructions: Any instructions given should be modulated to the autistic child’s ability to comprehend. Short and simple instructions are best. If possible, demonstrating what you want may be helpful. Again, the typical child should be encouraged to be patient.
Praising good performance:When the autistic child does cooperate or performs a skill well, praise is in order. This can take the form of verbal praise, hanging up a drawing on the refrigerator, or providing a treat of some kind.
Positive reinforcement is a great motivator for both typical and autistic children. Parents should remember that during this learning process, the rules of skill development apply to both the typical and autistic child. Parents should be patient with the typical child, encourage their efforts, and praise their success.
How can I get my autistic child to exercise?
Exercise is important for the autistic as well as the typical child. Regular aerobic exercise has been demonstrated to decrease anxiety in autistic children, reduces weight, reduces risk for heart disease and diabetes, and engages the child in a constructive use of his time.
Before a parent can encourage their child to exercise, he or she must create a space in the home or yard where the child can safely run and play. Some characteristics that this space should have include:
This area should be enclosed to prevent wandering, getting lost, or having access to strangers.
This space should be easily accessible to the parent and the child should be visible at all times.
Recall that the autistic child can be very curious and oblivious to danger. Parents need to be circumspect when choosing or improving a play area. Things that would not present a danger to a typical child might be very dangerous to an autistic child. Therefore, parents should be sure that their child’s play area is free of attractive hazards, such as:
Dangerous things to fall off of, including natural and manmade structures (tool sheds, rock formations, utility poles, or high-tension wire towers)
Dangerous things to climb into or fall into (lakes, rivers, pools, wells, drainage pipes, crawl spaces, electrical closets, sump drains, or natural caves)
Dangerous things to play with (sharp objects, cutting tools, power tools, explosives, firearms, cigarette lighters, matches, caustic chemicals, medications, wild or otherwise dangerous animals, or small objects that a child could choke on) In this area, parents or siblings can devote some time of every day to playing games that require low organization and little equipment, such as “tag” or “hide and seek.” Eventually games that involve throwing or catching balls can be introduced and as your child’s skills grow, more advanced and physically demanding games can be taught.
If the parents enjoy running, swimming, or cycling, the child should be encouraged to participate. These activities can be enjoyed by the whole family, allowing parents and siblings an opportunity to exercise while supervising the exercise of their autistic child.
In some areas, groups of parents and other volunteers form athletic leagues and sports programs for children with disabilities. These can be great opportunities to teach your child athletic skills and get exercise.
I spent time and money childproofing my home when my son was an infant. Do I have to change anything now that he has been diagnosed as autistic?
Childproofing your home is not a novel idea or difficult to accomplish for parents with only typical children. With typical children, a gate at a stairway, a lock on cabinet door, or a plastic cover for an electrical outlet will usually suffice.When the child is a few years older, these precautions and devices can be removed without adverse risk to the child.
For parents of autistic children, “childproofing” your home is much more complex and lasts much longer. The characteristics of autistic children make them high risks for injury in the home. As a group, they can be hyperactive and enjoy 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. They can be very curious and indifferent to obvious dangers from flames, hot liquids, heights, sharp objects, cutting tools, and the like. Finally, because these behaviors can extend for many years beyond what you could expect from a typical child, autistic children are taller, stronger, and smarter than the toddlers many safety devices are designed to protect. They can force open doors, break windows, reach sliding bolts, open simple locking devices, and put keys in locks that are more complex. Autistic children tend to be very curious and very persistent. Typical children tend to outgrow destructive or dangerous behaviors, whereas autistic children tend to continue to manifest unsafe behavior as they continue to grow. You should never underestimate the creativity and persistence of an autistic child when it comes to defeating safety devices.
Therefore, more attention needs to be paid to safety around the house. Safety does not only lay in changing the environment, but also in changing the knowledge and behaviors of the autistic child, the parents, siblings, and other household members. Everyone should be interested in the safety of your child. Leaving doors or gates open, cigarette lighters around, or firearms unsecured are common ways for other household members to affect the child’s safety.
Is my home unsafe for my autistic child?
Perform a survey of your house or apartment as well as any yard or play area that your child will spend time in. As you enter each space, review the following list and note what risks to your child the room contains and make a note of each safety risk. Parents should examine each room for the potential of: Fall injuries: Are there unguarded stairways; access to unlocked or opened windows; stairwells, window wells, and tall furniture that can be climbed on; and access to washing machines or dryers, crawl spaces, sump drains,
Burn injuries/fires: Could your child get access to matches, lighters, lit candles, open pilot lights for stoves, boilers and burners, stove tops, and burning cigarettes, cigars, or pipes? Can your child open a hot water faucet or touch hot water from boilers, radiators, or heating pipes? Can they reach toasters, teapots, or coffee urns? Are there caustic chemicals, pipe cleaners, solvents, or acids accessible?
Cut injuries: Does the space contain knives, razors, scissors, broken glass or ceramics, saws, garden clippers, weed cutters, lawn mowers, and other power tools?
Suffocation/strangulation/drowning: Can your child grab small swallowable objects, plastic bags, and plastic sheets? Could they get their head or neck caught in hanging ropes, electrical wires, nets, or bars? Do they have access to pools, ponds, lakes, wells, or any other open water?
Electrical injuries: Are there exposed electrical wires; uncovered electrical outlets; electrical appliances that are too near tubs, sinks, or other bodies of water that the child could throw them into?
Toxic ingestions: Are there accessible cleaning fluids, drain cleaners, acids, lye, paint remover, gasoline, kerosene, pesticides, medications, vitamins, minerals, hobby supplies, paint chips, and so forth?
Firearms injury: Are there firearms that are accessible?
Even if they appear out of reach or out of sight, they may be found by a curious child.
Elopement: Are there unlocked doors or windows that the child can use to leave the home? If your child left this space, would you notice? Are alarms available for this purpose?
How do I make my home safe for my autistic child?
The following suggestions have been found to be helpful in preventing certain types of behaviours and ensuring a safer environment. The suggestions range from using locks for security or limiting access to the individual to labelling every functional item and area in the home with photographs or symbols to assist in communication.
After you have identified all the risks in the home, separate each room into one of three categories:
2. Needs modification
3. No access allowed
Safe rooms are those rooms where the child can spend time with little risk to their safety. Rooms that require modification are rooms where furniture may need to be removed or replaced, electrical outlets covered, or locks put on doors and cabinets. Rooms labelled “no access allowed” are those rooms that contain things that can harm the child, but cannot be modified easily. For example, young autistic children have been known to be injured when climbing into washing machines or dryers. If you have a laundry room, it may be easier to put a lock on the door than to design a way to block access to the washer and dryer. The same could be said for basements filled with power tools or painting supplies.
Modify the most important areas first. Not every parent can afford a complete home security makeover. Therefore, parents should identify those areas where the child spends the most time and work to secure them first. For example, the child’s bedroom, bathroom, den, kitchen, and backyard are all good places to start because these are the primary areas of interaction for many children with autism.
Get the right furniture. Autistic kids can be hard on furniture. They enjoy jumping and climbing; leaping from one piece of furniture to the next. Therefore, high dressers may pose a fall injury, glass-topped coffee tables may be shattered, and sharp edges on end tables can cut and bruise active children. Furniture that poses an immediate risk to the child should be removed from the room. When choosing new furniture for a room that your autistic child will spend a lot of time in (such as their bedroom or playroom), look for soft durable chairs (for example, beanbag chairs), desks and tables with rounded edges, low beds, book cases that can be affixed to the walls, and so forth.
Use locks, fences, and gates 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, 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, such as cabinets that contain medications or cleaning supplies. Foldable gates can be used to deny access to stairwells or other rooms. Keep in mind that although these gates may be appropriate for small toddlers, as your child gets older and stronger, they may not provide an effective barrier. Enclosing the front or backyard with a fence can provide a safe haven for your child to play. If you have a pool, use a cover over the pool and lock it.
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 place wooden boards over windows to prevent injury or elopement.
Use alarms when appropriate. Some autistic kids seem to enjoy escaping from the house unnoticed. They slip out of doors or windows and even open locks as they get older. Putting alarms on doors and windows can alert parents of their child’s attempts at escape. This may be safer than putting up too many barriers that may prevent appropriate escape during a house fire. These needn’t be expensive, integrated security systems. Local electronic stores sell inexpensive, yet very effective, alarms for individual doors and windows. Make electrical outlets and appliances safe. Cover or remove electrical outlets and access to electrical appliances. Use plastic knob covers for doors, faucets, ovens, and stove burners. Ensure that all wiring for appliances and electronics is concealed in a way that the child cannot play with the wires or bite or cut them. Heavy items such as televisions, VCRs, or computers should not be stored in high places, so that a child could pull them down on his- or herself.
Lock dangerous items away. Make sure toxic substances are secured in a locked cabinet. These substances include detergents, caustic chemicals, cleaning supplies, pesticides, medications, and small items that a child may mouth or chew. Sharp tools and kitchen implements should lock away (if practical) or placed out of sight and out of easy reach if they are regularly used. Rather than have these items all over the house in places that are convenient to the chores they are used for, it may be safer to store them in one place, such as a closet or cabinet that can be securely locked. For items such as kitchen knives or sharp scissors, locks can be placed on individual kitchen cabinets or drawers.
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 the child cannot turn them on. Always supervise the children closely when there is an active fire in the fireplace or when there is a barbeque with open flames. Many community fire departments can provide stickers (often called tot finders) for bedroom windows of children. These are invaluable in the event of a fire so that firefighters can locate a child’s bedroom quickly. Although it may be difficult to teach an individual with autism or PDD about the dangerous nature of fire, it may be possible to teach them about how to behave when it comes to fire safety.Be careful with firearms in the house. Autistic children will not readily learn gun safety. No guns should be accessible in nightstands, on top of dressers, and the like. All firearms should be locked in a gun safe, unseen and inaccessible to children in the house.
Consider identification options. Autistic children have a tendency to wander, to lag behind groups, to get lost, and sometimes escape from their own home. If your child has proper identification, it is easier for others to help them return home. This is especially true if your child is unable to communicate effectively. If your child will tolerate wearing a medical ID bracelet or necklace, get one (they can be found at your local drug store or ordered on the Internet). However, many children with autism do not like to wear jewellery, so the next best option is to place iron-on labels into each garment. Some children can be taught to carry an identification card in their wallet, purse, fanny pack, or knapsack. Children can be taught to show their identification cards when asked by adults.
How do I change my child’s behaviours to reduce the risk of accident or injury?
Risks in and out of the home cannot be effectively eliminated; for example, it is impossible to abolish hot cooking pots on the stove, sharp knives in the utensil drawer, or the traffic on busy streets. In these cases, teaching children about the dangers and ways to avoid them is important. Developing social stories about smoke detectors, fire drills, fire alarms, touching fire, talking to strangers, and so forth is the place to begin. (A social story is a short, personalised story that explains the subtle cues in social situations and breaks down a situation or task into easy-to-follow steps.) These stories need not be long or complex, and they should be repeated often, especially in potentially risky situations. For example, when Mum is cooking on the stove, she may tell the story to her child of a boy who burned his hand when he touched the flame or the hot pan. These stories can be embellished with songs, rhymes, or funny faces. However, if repeated often enough, the child will learn to avoid the dangerous situation.In addition to social stories, the use of visual (photos or 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 oven burners with a bright red “no” symbol or STOP sign over the photograph may visually depict the rule for the child.
The behaviour of the child is not the only behaviour that must change. Parents used to caring for typical children will notice the supervising takes a lot more effort. The parents or guardians of autistic children need to be more vigilant because autistic children tend to be more persistent in their actions and are not deterred by obvious dangers or chastened by stern lectures.
Children with autism may need extra precautions to stay safe in your home. However, it is important to find a balance between keeping your child secure and making your home a prison. You should keep in mind that locks should not be so secure that they prevent anyone from leaving the house during an emergency such as a fire. Vigilance is an important virtue in the parents of autistic children.Vigilance requires more effort and can induce more stress.
Where do autistic people usually live?
In general, autistic people have the same living options as people with other disabilities. Their living arrangements are matched with the individual’s needs, capabilities, and the finances of their family. It is important for parents to understand that, unlike educational services, the federal and state governments have no obligation to provide their child with a place to live. Therefore, parents must consider today where they’d like their child to live in the future and begin making plans years before the child will require those arrangements. In the past, autistic children were likely to be placed in an institution.
Today, except in rare instances, autistic children live with their parents.
Autistic adults, however, have more options. These options include:
Family home. Parents or interested and involved siblings can provide a home and care for their autistic family member. If the parents have no typical children to care for their child after they die, they can arrange for a caretaker or companion to live with their child in the home.
State-run mental health facility. This is an option for autistic adults with severe intellectual or behavioural impairment who require continual care and supervision. Although the trend in recent decades has been to avoid placing persons with disabilities into long-term care institutions, this alternative is still available when necessary. Unlike many of the institutions years ago, today’s facilities view residents as individuals with human needs and offer opportunities for recreation and simple but meaningful work.
Group home. A group home is a single-family residential structure designed or adapted for occupancy by unrelated developmentally disabled persons. The structure provides long-term housing and support services that are residential in nature. The residents typically participate in daily tasks and are often free to come and go on a voluntary basis. A group home might have four permanent residents with two staff members for most of
the waking hours and one staff member while the residents sleep. A group home can be owned and funded by the state, a charitable organisation, or a family.
Assisted living facility. Assisted living refers to a residential care facility that provides housing, support services, and at times, health care for a group of unrelated developmentally disabled people. Typically, these people are not able to live independently but do not need the level of care that an institution offers. The assisted living situation can be tailored to the needs of the individuals; for example, two autistic people could share an apartment and be visited daily by a representative of social services. An assisted living facility can be owned and operated by the state, a charitable organisation, or a family.
Autistic kids can be hard on furniture.
The behaviour of the child is not the only behaviour that must change.
What is respite care?
Families caring for a disabled person can be tied down much more than other families.Autistic children are individuals and the amount of supervision autistic children require varies, but in general, there is an extra burden on the parents. This burden can be severe in many cases.
Providing care and supervision can possibly require as much effort as would an additional full-time job.
“Respite” or “respite care” refers to short-term, temporary care provided for people with disabilities such as autism. This care is given so that their families can take a break from the daily routine of caregiving. Unlike child care, respite services may sometimes involve overnight care or care for an extended period.
One of the important purposes of respite is to give family members time and temporary relief from the stress they may experience while providing extra care for a child with autism. This, in turn, can help prevent increased family stress, support family unity, and avoid child abuse and neglect. Respite care enables families to take vacations or just a few hours of time off. Respite is often referred to as a gift of time.
Respite care services can be provided by other families or friends, charitable groups, or even by government agencies. Most programs are managed by affiliates or chapters of national organizations such as The Arc, Easter Seal Society, and United Cerebral Palsy Associations in cooperation with local hotels. Many other programs are provided by local organizations such as churches, schools, and other nonprofit groups. Sometimes families arrange for care with neighbors or other people they know.
The service may consist of providing an experienced caregiver to look after the child for a few hours; others require that the individual come to a day care center or group home set up to take care of the child for a weekend on occasion.
I wish we used respite. We don’t. Not because we don’t feel stressed. We do. And not because we don’t think that some time alone would help us to relax-we do. Our lives would be a lot easier if we did so. However, we can’t bring ourselves to leave Liam alone. It is very difficult to entrust such a sensitive and dependent child to the care of others.
Respite is often referred to as a gift of time.
How can I tell if my family needs respite care services?
Families with an autistic child can suffer constant stress.
Despite this elevated level of stress, many parents may be reluctant to use a respite program, fearing caregivers will not understand or appropriately care for their child. Some families may even question the need for this type of service. Experts recommend that families of children with autism ask themselves these questions to determine if respite services may be helpful or even necessary:
- Is it difficult to find temporary care for my child?
- Does caring for my child interfere with scheduling appointments or completing personal projects?
- Have the demands of caring for my autistic child left me depressed, saddened, or chronically fatigued?
- Is it important that my spouse and I enjoy an evening alone together without the children?
- Does caring and supervision of my child prevent me from getting regular exercise?
- Does caring and supervision of my child prevent me from maintaining relationships with friends and family?
- If I had appropriate care for my autistic child, would I use the time for a special activity with my other children?
- Am I concerned that in the event of a family emergency, there is no one with whom I would feel secure to leave my child?
- Would I feel comfortable having a trained, caring respite provider care for my child?
- Has the family avoided vacations altogether because of the fear and anxiety associated with traveling with the autistic child?
- Do I avoid going out because I feel I would be imposing on the family and friends who care for my child?
If family members answer “yes” to any of these questions, the family may very well benefit from respite care services.
How are parents with autistic children stressed?
To be a parent is to be stressed. Being responsible for children, their behaviors, and their demands for attention, time, and finances can exceed even the most capable parent’s abilities. An autistic child adds significantly more stress and unique types of stress to any family.
The sources of stress for parents of autistic children include:
Deficits and behaviors of autism: Research indicates that parents of children with autism experience greater stress than parents of children with mental retardation and Down syndrome. This is the result of the distinct characteristics of autism. Caring for a person who cannot communicate is highly frustrating. Autistic children may not be able to express their basic wants or needs. They cannot tell their parents if they are hungry, thirsty, bored, in pain, or nauseated.When the parents cannot determine their child’s needs, they feel frustrated and depressed.
The child’s hyperactivity, distractibility, and impulsiveness require a higher level of supervision and physical security and these traits interfere with functioning and learning.Further, this inability to engage in self-directed and appropriate play requires the parents or caregivers to constantly structure the child’s time. This structuring imposes similar structure on the parents and siblings.
Family activities such as meals, sports, movies, or quiet relaxation are all colored by the mood and abilities of the autistic child. Such questions as:
- Will he sit through the whole movie?
- Will she eat what everyone else is eating?
- Will he throw food while our guest is at the table?
- Will the noise at the circus be too loud?
- Will we have to leave early?
- Should we even bother going?
All of these deficits and behaviors are physically exhausting for families and emotionally draining.
Finally, spouses often cannot spend time alone due to their extreme parenting demands and the lack of qualified people to watch a child with autism in their absence.
Feelings of grief and loss: Parents of children with autism 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 family. The feelings of grief that parents experience can be a source of stress due its ongoing nature. The parents of autistic children experience episodes of grief triggered by different life events such as birthdays, holidays, or the graduation or marriage of a peer or sibling.
Finances: An autistic child makes demands on a parent’s time, emotions, and finances, much more than a typical child does. Expenses such as evaluations, home programs, adapting the home environment, and various therapies can drain a family’s resources. A dual-income family may need to become a single-income family, when one parent gives up his or her job to become the primary caregiver. The specter of future costs of care for an adult child is ever present in the parents’ minds and a constant source of worry.
Reactions from society: While parents can be very accepting of an autistic child’s behavior at home, this same behavior in public may cause them significant stress. People may stare, make comments, or fail to understand any mishaps or misbehaviors that may occur. Autistic children, even when behaving well, may be too loud, too active, and too friendly with strangers.
When frightened, they may scream; when bored or frustrated, they may throw a tantrum. Memories of these public experiences affect family decision making regarding outings, family events, and vacations.
Feelings of isolation: Families may feel uncomfortable taking their child to the homes of friends or relatives.
When there is an obligatory family gathering, such as a holiday, wedding, or funeral, the family’s stress level can soar. Ultimately, the family may feel as though they cannot socialize or relate to others. Isolation from their friends, relatives, and community is common for parents of autistic children.
The future: Even well-adapted, well-functioning, and balanced parents become distressed when they think of the future for their child. They may ask: “Who will care for my child when I am gone? Will they care for him as well as I do? Will they understand the subtle signs she shows when she is sick? Will they give him his or her favorite foods? How will I pay for this care?
Will his siblings have to care for her?” There are no easy answers for these questions, and the worries attendant to them are always in the back of a parent’s mind
To be a parent is to be stressed.
Respite care - A short period of rest or relief. Parents of a child with a disability may qualify for respite services when a child is cared for by a third party allowing the parent (s) to take care of other needs away from the child, like the needs of themselves or other children in the family.
What are some ways that parents can reduce their stress?
A normal range of emotions, fears, and concerns go along with raising a child with autism. There is a predictable spectrum of stresses from minor irritations to major life-altering troubles. These current and long-term challenges put you and your other children at an increased risk for depression or stress-related illness.
Here are some ways you can approach these issues:
Learn new ways to relax. Get involved in a hobby, visit with friends, or practice yoga or meditation.
Exercise. Exercise is an excellent way to take your mind off your troubles, at least for a short time. Research shows that exercise improves the moods and decreases the anxiety level of people who practice it regularly (at least three times per week for at least 30 minutes per session). Exercise also improves your health and is a way to manage your weight.
Pay attention to your diet as well as your child’s. Monitor the quality and quantity of the food you and your family eats. Food can easily become a way to satisfy yourself or calm your child, but it comes at the expense of your weight and health. Consult a physician or dietitian if this has become a problem.
Utilize respite care. Respite care provides a break for parents and siblings. Plan respite care frequently; don’t use it only when an emergency comes up or when you’ve become burned out. Regularly planned respite care gives parents and siblings an opportunity to relax and allows the autistic child a chance to interact with someone outside of the family or his or her school.
Participate in support groups. Being active in an autism support group can be very helpful. Support groups for parents and siblings give the family members an opportunity to learn from the experience of others. Parents also benefit from having a sympathetic and nonjudgmental group with which to discuss their challenges and frustrations. The Autism Society of America provides information about support groups in your area. Contact them at www.autism-society.org.
Use counselling services if necessary. Talk with a health professional about whether counselling would help if you or one of your children is having trouble handling the strains related to having a family member with autism.
Have a spiritual life. Individual or family prayer can reduce stress and provide a better outlook on the future.
Make to-do lists. Keeping a daily list of chores can help when planning your day. It encourages focus and adds to a sense of accomplishment.
Do some families deal with stress better than others?
When a child is diagnosed with autism, it is not uncommon for parents and other caregivers to become angry, depressed, and frightened. The parents and other family members undergo a grieving process because their goals, dreams, and ambitions for their child are dashed. They are faced with a new reality; one where the child is emotionally distant, behaviorally volatile, and yet highly dependent for basic care. There are new words for the parents to learn, new schools to attend, and a new home environment to create. It is, in fact, a crisis, and the crisis puts great stress on the family.
Some families are remarkably adaptable in crises. Yet, other families can find it difficult to cope with the stresses and eventually may succumb to them.
Even in an excellent marriage, one spouse may be better equipped to deal with this crisis than the other. We have found this leads to feelings of stress, anger, and inadequacy It can cause tension in an otherwise happy marriage. Increased communication and honesty about feelings can increase understanding between the spouses and lessen the tension. Seeking counselling is not a sign of weakness, but of strength, we have found.
Maladaptive families are unable to achieve a balance between meeting their child’s needs and maintaining their own functioning. For example, these families may overindulge their child and foster his or her dependency, while other family members may be ignored or mistreated in an effort to meet the needs of the autistic child. Alternatively, maladaptive families may emotionally abandon their autistic child. They may ignore the existence of the child’s disability and delay appropriate treatment and services. In some cases, one family member, such as a mother, accepts all responsibility as the child’s caregiver and primary therapist. She cares for all of the child’s needs as well as performing the usual household chores and caring for her husband and other children. This mother may find it difficult or impossible to perform all these duties. She may become angry and bitter at the other family members who are not “helping out.” The family may feel this is the mother’s appropriate role and not understand the amount of work that is required. They may feel like they are intruding or not included in the care of the child. In this situation, the mother and the autistic child become isolated and both suffer in the process. These maladaptive patterns stem from a family’s inability to communicate their needs effectively with each other, as well as with care providers or with support networks. Additionally, families like these will fail to seek and accept help. They may feel ashamed by their child’s diagnosis or they may feel that personally supervising the autistic child at all times is their primary responsibility. Additionally, these families may be inflexible in their social or gender roles. For example, they may feel that only the mother should care for the autistic child and that husbands, siblings, or grandparents should not be involved. Finally, these maladaptive families become very isolated because of the demands of the child. They fail to maintain relationships with friends and family. Because of this, they have no outlets for their anger, frustration, and fear.
Their social isolation limits their extended support network, which would be an aid in an emergency. Finally, isolation decreases or eliminates interaction with friends with whom they should be able to relax, unwind, and recharge.
In contrast, the characteristics of successfully adoptive families are:
Flexibility in their roles within the family. While one member may act as the primary caregiver, other members take over some of his or her responsibilities. They offer relief or respite at times and unburden the caregiver or family member, regardless of their traditional social roles.
They communicate with each other and outsiders effectively. These families are able to communicate their need for social support, for occasional respite, or for additional educational or therapeutic services.
They seek out and accept help.These families realize that sometimes the demands of an autistic child are more than they can handle.They are not embarrassed by the illness nor do they think it is some kind of divine retribution. It is important for parents to seek assistance from whatever sources are available. They talk to their health professional and investigate what help is available locally. Family, friends, public agencies and national or community organizations are all potential resources. Support groups for parents, siblings, and grandparents are available through educational programs, parent resource centres, autism societies, and developmental disabilities offices. In addition, online support is available for family members. A case manager or social worker may help to identify sources of aid as well as help to fill out the paperwork.
They maintain their relationship with the community. These families realize that having an autistic child can be isolating. Isolation increases family stress and decreases their life enjoyment as well as the size of their social care network. Therefore, these adaptable families make socializing and down time an important priority in their scheduling. Finding other families in the same situation can be helpful. It gives a family comfort to know that they are not the only ones experiencing a particularly stressful situation. In addition, families can get useful advice from others struggling with the same challenges.
They have the ability to solve problems. These families use these abilities to identify problems associated with raising an autistic child, to effectively communicate what the problem is, to seek out and find help, and to share responsibilities and not be overwhelmed by them.
This type of family is successful in meeting the needs of their autistic child without a loss of balance and functioning.
Do siblings suffer increased stress as a result of having an autistic brother or sister?
Yes, at times, an autistic brother or sister can increase a sibling’s stress levels. In fact, research demonstrates that the siblings of children with autism report higher stress levels than siblings of children with other types of disabilities.
Common causes of stress for the siblings of autistic children include:
Embarrassment. When in the company of peers, the behaviours of an autistic sibling may cause embarrassment. The sibling may avoid having friends over to the house. They may not discuss their brother or sister’s condition or even his or her existence with friends or classmates.
Jealousy. Autistic children can dominate the time and emotional energy of the parents. Some siblings may feel left out, become resentful, or become jealous.
Frustration. Autistic children experience significant problems with socialization and communication. Siblings of these children may experience frustration over not being able to engage or get a response from their brother or sister. Brothers and sisters who would like to play with, comfort, or protect their sibling may become frustrated by their inability to communicate with him.
Physical abuse. Autistic children have limited abilities to show that they are frightened or frustrated. Some may vent this frustration by becoming physically aggressive. Siblings are often a convenient target of this inappropriate expression of frustration. Although this is rarely dangerous for the sibling, it can be extremely upsetting.
Self-discipline. Siblings may become overly sensitive to the burdens placed on the parents by their autistic brother or sister and may try to overcompensate with their own behaviour. This attempt at trying to make up for the deficits of their brother or sister may manifest itself by the typical sibling attempting to be especially well behaved or especially successful in athletics or scholastics. This self-imposed discipline may become unrealistic, overly demanding, or abusive.
Anxiety about parents. Children are sensitive to their parents’ stress and may fear the consequences of the parents’ stress or grief. They may fear for their parents’ health, happiness, or the longevity of the marriage. The siblings may ask themselves: “Will my parents fight again? Will they get divorced? Will this cause my father to have a heart attack? What will happen to me?”
Fear. As the siblings grow older, they realize that their autistic sibling requires a lot of care and supervision. Further, they realize that their parents will not be able to care for their autistic sibling forever. They may worry that they may have to care for their brother or sister or may feel guilty because they don’t want to become their sibling’s primary caregiver. They may fear the future. “Who will care for my brother when my parents are gone? Will I have to care for him? Could I get married if I had to care for my brother? What would my spouse say about it?”
Guilt. Siblings may experience guilt when asking for appropriate things, such as their share of parental attention, time alone, money, or even suggesting a family trip without the autistic sibling. Not all siblings will experience these issues, but parents and other caregivers should be aware of them and take actions to prevent them when possible.
Like parents, grandparents, uncles, aunts, and cousins can grieve over the loss of the “typical” child they expected. In addition, these family members are concerned about the stress and difficult situations they see the child’s parents experiencing.
Many of these family members want to help but don’t know how. They are usually inexperienced in caring for autistic children and may be frightened by the prospect. They may not have the energy or the physical strength to manage the child. The usual positive feedbacks that come from sweets, toys, and trips to the zoo appear unappreciated or ignored. This can cause parents to become frustrated when they perceive other family members not understanding their situations or helping out.
Plan respite care frequently
Finding other families in the same situation can be helpful