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Parenting an Autistic Child
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Parenting an Autistic Child
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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 settings.
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 depressing.
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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