(58) Autism

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.

William’s comment:

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