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|Parenting an Autistic Child
Raising a child with autism is one of the hardest things a parent will ever have to do. It is an overwhelming challenge physically
and emotionally adding anxiety on the person caring for the child. Rearing a child with autism often contributes to marital
problems, problems with other children, and job instability. Unfortunately, there are no reliable treatments for autism, and the
responsibility of upbringing, developmental and behavioral problems of the autistic child falls largely on the family. Although
there is nothing that we can do to change the origin of the problem, there are strategies which family members can do to reduce
the level of abnormal behavior and increase the child's ability to cope.
Research indicates that parents of children with autism experience greater stress than parents of children with learning
disabilities. An individual with autism may not express their basic wants or needs in a way that one would expect. Therefore,
parents are left playing a guessing game. Is the child crying because he/she is 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).
Autism characteristics and compulsive behaviors concern parents since they seem odd and obstruct with performance and
learning. More parents are raising children with a diagnosis of autism and families often find themselves dealing with financial
and social challenges, as well. Daily care routine, economic problems, receiving appropriate help and education are the basic
hardships of the parents of a disabled child. The additional stress can be significant, taking its toll on the whole family and even
contributing to a high divorce rate.
Fifteen years ago the incidence of autism was 1 in 5,000, compared to today's rate of 1 in 150, according to the Centers for
Disease Control and Prevention. While an ASD diagnosis can alter parents' dreams for their children, they should be optimistic.
Much has been learned about ADS in the last 15 years and research into causes and interventions continues to grow.
Receiving the Autism Diagnosis
Natural, unfamiliar and overlooked feelings of guilt related to parenting may interfere with feelings of ability in the parenting role.
With the diagnosis of an autistic child, parents were reported to experience complex feelings that include the feeling of losing a
loved one. The reaction to a loss has patterns of shock, denial, cope, depression, and acceptance modification in adults. Guilty
feeling, depression, and anxiety were part of this process and it took more than a couple of months to reach the supportive and
adjustment phase in some parents.
Diagnostic confusions, behavioral and health problems, and feeling of loneliness in parents also add to the burden. The increase
in the severity of the disability results in a more dependent child, more responsibility for the parents, and therefore more anxiety
in the parents. Studies showed that the parents of an autistic child experienced additional anxiety due to social relationships, delay
or absence of speech development, stereotypical actions, hyperactivity, and lack of eye contact. The mothers of autistic children
were reported to be more withdrawn and uneasy than mothers of typically developing children. The parents of children with
autism have reported to suffer from emotional disturbance, sensitivity, and frustration from criticism. Studies have found
elevated signs of anxiety in the mothers of autistic boys. The parents of autistic children were also found to have limited
friendships. If a child has deficits in social skills, such as the lack of appropriate play, stress may be increased for families;
individuals lacking appropriate play skills often require constant structure of their time, a task difficult to achieve in the certain
The Challenge of Parenting a Child with Autism
Parenting a child with autism is uniquely challenging and can be very demanding. Recently, there are increasing efforts to involve
parents of children with autism in interventions. In comparison to parents of typically developing children, parents raising
children with disabilities experience more parenting stress and have higher rates of anxiety. Even among parents raising children
with disabilities, parents of children with autism report significantly higher levels of stress and are more likely to experience
depression. The underlying cause of these findings may be that parenting stress is associated with the frequency and extent of
child’s inflexible behavior and children with autism often engage in unusual behaviors and have heightened sensory sensitivity.
Parents’ expectations and beliefs about parenting begin before their child is born and are modified through interactions with their
developing child. Because children with autism behave in ways that are unusual and hard to foresee, how parents interpret their
children’s behavior may play a strong role in parental experience. Studies have revealed that parental stress and depression are
negatively associated with parenting capability, or the parents’ way of interpreting feelings of competence in the parenting role.
Understanding self-efficacy also has been associated with wellbeing among mothers and has been shown to reduce the effect of
the child behavior on mothers’ anxiety and depression. A better outlook to abilities and feelings about parenting a child with
autism may lead to a more supportive involvement that enhances the parent’s wellbeing.
Finally, many families cope 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. Fixed
behaviors may prevent families from attending events together. For example, one parent stays home with the autistic child, while
the other takes the siblings out to an event. 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 caregiver to
watch a child with autism in their absence.
The Stress of Future Care-taking
One of the most major sources of stress is the concern regarding future sheltering. 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 carrying out this task. Even though parents try to fight off thinking about the future, these
thoughts and worries are still constantly present.
The Stress of Finances
Having a child on the autism spectrum can drain a family's resources due to expenses such as evaluations, educational programs,
and various therapies. The care-taking demands of nurturing for a child with autism may lead one parent to give up his or her
job, financial strains may be escalate by only having one income to support all of the families' needs.
The Stress of Not Having a Typical Child
There is a well-known point of view which says that parents of children with autism spectrum disorder are grieving the loss of
the "typical" child they expected to have. In addition, parents are distraught by the loss of lifestyle that they imagined for
themselves and their family. The feelings of anguish that parents experience can be an additional build up of stress due the child’
s ongoing temperament. 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, endless care-taking) trigger grief
reactions (Worthington, 1994). Experiencing "chronic sorrow" is a psychological tension that can be frustrating, confusing and
Knowledge of Autism is Helpful to Parents
Little is known about how awareness among parents of children with autism may affect their parenting experience, and there is
not much research studying this topic. Knowledge of the main features in autism (i.e., communication, social relating),
characteristic stereotypes, genetics of autism, and effective intervention methods may also facilitate feelings of potential. By
accepting the child has autism parents are able to make sense of their children’s actions and behavior by recognizing their
children’s underlying wants and needs. It is possible that parents of children with autism may face further challenges in
identifying the child’s response to specific influences which are often abnormal and therefore difficult to interpret. In addition,
their affected children’s developmental path may be considerably less predictable than that of typically developing children.
In a recent study, mothers of children with autism reported more trouble understanding their children’s behaviors than mothers
of typically developing children. Accurate knowledge of autism may aid parents in relating to their children’s difficult behavior.
Reading up on and accepting autism may promote feelings of parenting success. Depression and stress are two ailments parents
experience in rearing a child with autism.
It’s been proven that the mothers of autistic children experienced more psychological distress than those of mentally retarded
children. Too often parents do not have guidance in the difficult process of coming to terms with their child’s diagnosis. The
psychological legacy in which mothers were blamed for their children’s autism disorder lingers and may contribute to the social
shame some mothers feel. Although there is recognition of the challenges and strains that families face when a child is newly
diagnosed with autism little is known about whether parents feel guilty about their parenting.
When parents are given the diagnosis of autism for their children, they often experience a combination of grief, shock,
confusion, fear, worry, isolation, anger, numbness, sadness, and/or overwhelm and may wonder if they somehow accidentally
contributed to their child’s abnormal developmental pattern. On the other hand, some parents who have been seeking help or
answers may feel relief and/or confirmation when they finally receive a diagnosis.
The General Public’s Reaction to Autism
Taking an individual with autism out into the community can be a cause of stress for parents. People may stare, make comments
or fail to understand any mishaps or behaviors that may occur. For example, children with autism have been seen taking a
stranger's food right off their plate. As a result of these possible 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.
Children with autism have an impulsive determination and do unpredictable things. This makes family outings complicated
because parents can not anticipate what the child will do next. Shopping in the community may be a disappointment children
with autism may become distressed and may throw themselves on the ground, scream, or act peculiar attracting stares from
society. When out in the general public parents may experience irritating situations depending on the circumstances and
influences. There are times that the child maybe well behaved and times where the child may cause a scene for parents it’s a
constant struggle due to the child’s inconsistent behavior.
Accommodating Autistic Behaviors
Look for reason for problems or warning signs that come before major behavioral outbursts. Once you can identify warning
signs, you may be able to adjust the situation to prevent an outburst. For many children, an outburst or tantrum is their only
method of communicating a need or distress. Other typical children may be quite helpful in figuring out the message of a tantrum
and the warning signs.
Develop a consistent structure and routine. Autistic individuals thrive best in an environment where things are predictable,
and usually have great difficulty with unexpected change and lack of structure. Have a schedule which your child follows every
day, and do things in the same way. Some children can cope with a free time schedule and appraise the happenings of the day
each morning. Others will need to be scheduled right down to the order of putting on clothing.
Prepare your child for changes in routine. For some children this will require only a reminder of the next event: "First dinner,
then bath". For others, the use of pictures or communication board picture can help with the transition. For example, "We are
going to McDonalds" and point to a picture of McDonalds or a hamburger.
Do not associate talking with communication. Children who do not speak can learn to communicate their needs. This may be
accomplished by the use of objects, gestures, pointing to pictures, or using sign language. Using these techniques is a normal
developmental step toward talking, and does not interfere with learning to speak. Remember that talking, for children with
autism, is not necessarily communicating. For many it is meaningless verbal output. For others, it communicates accurately at
times, but not for all. If your child does talk, make sure your understanding of what the child is saying really is what he/she
intended to express. Sometimes it is helpful for the adult to help by giving the child an opportunity to indicate what he/she wants
by offering choices. For example, "Do you want to watch TV or listen to music?"
Learn to live with some stereotypic behavior. When your child is in public, you want to train him/her to behave as well as
possible, but at home, they should have opportunity to just be "themselves." Many self-stimulatory and characteristic behaviors,
including verbal fixedness seem to serve a reassuring or anxiety required purpose. Consequently, while it may seem advisable to
try to prevent some of the more bizarre behaviors, it is extremely difficult to eliminate fixations entirely. Eliminated behaviors are
typically quickly replaced by another self-stimulatory or unusual behavior. The new behavior may or may not be more tolerable
than the initial behavior, and programs to eliminate these behaviors must carefully consider the possible consequences.
Diminishing the frequency or limiting the expression of autistic behavior to certain times and places are the most reasonable
goals. These are best accomplished by some disregarding, redirecting, or providing another task to focus on. Substitution or
training to distinct some bizarre behaviors can be successful and help the child to appear less different in the school or
community. This involves intense adult intervention and requires detection of equally reinforcing alternate behaviors. Any
behavior to be changed will need to be replaced with a behavior that is at least as pleasurable to the child.
Get support for yourself. The burden of raising a child with autism can be lightened by family, friends, community agencies,
and others who have shared similar experiences.
Work together with your school. An autistic child's curriculum requires a major focus on self care and community skills.
Deciding what each child needs to learn in school will depend on the unique features of each child, his/her level of intelligence,
family setting, and his/her need to function in the community. The family and school should decide together on the critical skills
each child needs to develop and then work together to train the child to use these skills in a real life setting. Remember, a child's
ability to read and do math will only benefit him in the long run if they can use them in real life settings, and can also take care of
his/her basic needs at home, and behave appropriately in the community.
Protect your child from aggressive role models as much as possible. Children with autism often copy behaviors without
understanding why the person did them-called echopraxia (the abnormal repetition of the actions of another person). This is
similar to the echolalia (echoing of words or phrases) many children engage in. Both forms of echoing may occur immediately,
or in a delayed fashion. Children who are spanked or hit are more likely to hit others. Those who observe violent behavior at
home, in school or in the community, as well as in movies or cartoons, may also imitate it inappropriately. Deciding which TV
shows it is appropriate for an autistic child to watch requires considerable adult insight and the cooperation of all family
members, including siblings.
Do not expect your child to tolerate new people or group situations. If your child must be with a group, allow him/her a
large personal space, and opportunity for escape.
Beware of irritating sensations. Many individuals with autism are hypersensitive to certain sounds, lighting conditions, skin
sensation, taste, texture or temperature. Many children also dislike certain colors. The exact form of these hypersensitivities
tends to vary over time, but most children require some adult recognition of the problem, and adjustments to limit the child's
exposure to them. A variety of programs to desensitize children to touch and sound sensitivities are being researched, and may
offer hope for children in the future.
|Parenting an Autistic Child
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