Parenting a Child with Autism

A child’s early years represent an important developmental window, so it’s valuable to research insurance coverage and explore behavioral therapies with your child’s doctor as soon as possible. These may include applied behavioral analysis, speech therapy, and occupational therapy.

Joining a local support group can be comforting and empowering, as it allows you to connect with parents going through the same experiences you are. The group can share emotions, fears, discoveries, and resources, especially those that pertain to services in their state or community.

It’s helpful to keep organized records of your child’s medical appointments to create a complete picture of your child at different stages. You may also want to take notes on developmental milestones, improvements, and health conditions.

Connect with your child in any way you can, such as by talking, reading, or showing educational videos, even if it seems like your child isn’t paying attention. Read accounts that other parents and autistic adults have written.

Finally, take care of yourself. Set aside time to recharge. Seek out positive people and avoid those who drain your energy.

Many features of autism—tantrums, aggression, language deficits, limited family opportunities, and the inability to gain independence—contribute to the deep and distinct distress that many caregivers experience.

Parents can struggle with grief, sadness, anger, and hopelessness. They may fear for their safety and the safety of their children. Constantly navigating health care systems and insurance companies requires immense time, energy, and money, leading to exhaustion and financial pressures.

To navigate these challenges, parents should research and access any and all services available to them. They can lean heavily on family and friends for support. If caregivers begin to suffer from anxiety or depression, they should seek professional help. Finding a support group near you is invaluable, as its members can provide understanding, emotional strength, and crucial information.

Every parent wants their children to form relationships that make them happy. Children with autism approach social situations with anxiety and frustration, but parents can help kids gain confidence, especially those on the high-functioning end of the spectrum.

Parents can model and explain social behavior to their child. After a particular interaction, they can provide a detailed, step-by-step explanation for their behavior, including their facial expression, tone of voice, and body language. Explanations and instructions that target the “why” of the behavior can be helpful since that understanding doesn’t come naturally to those with autism.

Parents can discuss social situations the child sees on TV or ones they’re likely to encounter at school. The parent and child should take turns role-playing, so that the child practices playing both individuals in the scenario.

Scheduling play dates with kids in a support group can allow children to practice social skills while providing parents an opportunity to discuss strategies with other parents.

Parents should aim to be open, factual, and positive. Children pick up on others’ feelings and attitudes, which can shape how they see themselves. If parents tiptoe around autism, keep it hidden, or feel uncomfortable talking about it, children can come to believe that they should hide their autism or feel ashamed or fearful of it.

Parents can also recognize their child’s strengths and challenges. Everyone has domains in which they struggle and those in which they excel. A child with autism may struggle to connect with others but excel at sewing or math. This can be a valuable framework with which to discuss their experience.

Tantrums and other difficult behaviors often emerge from an autistic child’s need to communicate. An essential component of discipline is therefore identifying what sparked their meltdown or what they want to express. Maybe the child was overwhelmed by the crowd at a holiday dinner or forbidden from playing with a toy. The first step of disciplining a child is observing and identifying potential triggers.

Parents may then seek to implement a system of rewards for positive behavior and punishment for negative behavior. Following this plan consistently can help the child understand the consequences of their actions.

There is a long history of “blaming” parents for their child’s autism, most prominently when psychologist Bruno Bettelheim falsely attributed autism to a cold, detached parenting style, infamously coining the term “refrigerator mothers.” Today we know that parenting style does not lead to autism—the condition is rooted in genetics and emerges from many different factors. Parents are not at all responsible for the development of the condition.

Yet some parents, often driven by societal misperceptions, may still struggle with feelings of blame. Parents can acknowledge their emotions and fears, and then recognize that their child also has strengths that they can support and appreciate. Those on the higher end of the spectrum may also reject the premise that there is anything to be blamed for, believing that autism is not a disorder but a different way of thinking and being.

Some research has identified a higher divorce rate for parents of children with autism, relative to the overall rate of divorce. A more recent study found no difference: 64 percent of children with autism had married parents, and 65 percent of children without autism had married parents. The idea that couples divorce due to autism may be overblown, or at the least, it merits more research.

Additionally, in a study of divorced parents of children with autism, 78 percent of respondents said that they divorced after their child was diagnosed, but 76 percent reported that autism wasn’t the primary reason they divorced. About half considered the diagnosis to be a contributing factor.

Strong marriages may weather the storm and emerge stronger on the other side. Marriages that are already struggling may be unable to endure the additional stress, and couples may ultimately decide to divorce. Becoming aware of how the stress of a child with autism has influenced other couples may help parents of a newly diagnosed child to anticipate and overcome those challenges.

A child with autism can change a family’s dynamic. Siblings of children with disabilities often grapple with stress and anxiety, in addition to emotions ranging from fear and guilt to embarrassment and resentment. They may try to hide those emotions from their parents so as not to be an additional burden.

Siblings can also experience parentification, as they may be expected to assume greater responsibilities and independence. They may feel neglected by their parents, who need to devote a tremendous amount of time to therapy and medical appointments and emotional energy into parenting. Additionally, siblings may lack the knowledge and information that parents have, which could result in fear for their sibling.

Nevertheless, siblings of children with autism can also come to embody countless positive traits, such as empathy, cooperation, tolerance, altruism, maturity, and responsibility.

Raising a child with autism costs around $60,000 each year, according to the advocacy group Autism Speaks. Costs may be higher if the child’s autism is more severe.

Finances are devoted to obtaining therapies, education, caregiver time, and health care. Parents may also face financial strain because a partner may decide to leave work to care for the child full time.

Services for children with autism are very often—but not universally—covered by insurance. All 50 states now require private health insurance policies to provide some degree of coverage for autism treatment. Most Medicaid plans cover Applied Behavioral Analysis when deemed medically necessary. Yet insurance companies may not reimburse the full cost or the length of time a child really needs.

Children with autism are eligible for educational services through their public school system. They may develop an individualized education plan or a 504 plan, both of which aim to help kids fully participate in their education.

Joining a local support group can be extremely helpful for parents of children with autism. In addition to emotional support, members have expertise in navigating available services in their state.