|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
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
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
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
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
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
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