Most parents experience stress. However, more than a few studies report that parents of children with autism experience more stress than parents of neurotypical children and parents of children with Down Syndrome. Autism spectrum disorder (ASD) is a lifetime, complex neurodevelopmental condition that is characterized by persistent impairments in communication, behavior, social skills, and daily life activities. The everyday challenges and stressors are not only hard on the child but also put a strain on the parents’ health. The increased risk for stress can ultimately lead to poor physical and mental health.
There are many factors that can increase stress for parents of children with autism. These include:
Stress can start as early as the moment their child is diagnosed. Often, stress begins with that “something’s wrong” moment when they realize that their child isn’t talking, interacting, or playing like other toddlers and even more difficult for parents to cope with the questions that follow. What does this mean for my child? What are the best ways to support my child? How can I help them build confidence? The many questions surrounding the diagnosis can cause overwhelming stress on the parents.
Between doctor and therapy appointments, parents of children with ASD may find themselves driving around town multiple times a week. Parents may have to clear their schedules of their own appointments and plans to accommodate to their child’s. Especially if parents’ self-care routines are disrupted, this can contribute to additional stress.
Ensuring Appropriate Care
As a parent, you want the best for your child and that includes ensuring that they get the help and care they need, wherever they go. As you learn the best ways to communicate with your child, you will schedule extra meetings with teachers and caregivers to collaborate on your child’s special education needs. This extra communication and facilitation can be exhausting or stressful for parents.
Parents of children with autism also have to learn to manage their child’s behavior. These behaviors may include repetitive behavior, tantrums, sensory overload incidents, hitting and/or throwing objects and even forms of self-injury. Many parents for children with ASD are strongly encouraged to be both parent and autism “therapist” at home. It can be stressful and even frustrating when you cannot figure out why they are behaving in certain ways and having to determine the best way to manage it. Not to mention, research suggests that highly-stressed parents have more trouble following their children’s behavior plans which isn’t good for anyone.
Poor Sleep & Fatigue
Children with autism often have difficulty falling asleep and staying asleep. And by default, the parents also have sleep difficulties. It can be physically and mentally draining for the whole family. Parents of children with autism also spend more time, at least two hours more, caregiving than parents of typical-developing children. This too contributes to exhaustion. Chronic fatigue can lead to higher levels of stress and other mental health conditions.
Studies have shown that parents of children with autism earn less and work fewer hours than other parents. They are also more likely to be interrupted at work. In one study, mothers of autistic children were interrupted at work 1 out of every 4 days when compared to mothers of children with typical development who were interrupted 1 in every 10 days. And due to additional expenses such as childcare, medical costs and therapy, parents of children with autism face more financial stress.
A child with autism may have difficulties communicating their wants or needs. When the parents are unable to determine their child’s needs, it can be frustrating for the child as well as themselves. Learning to understand and communicate with your child to best manage their behavior will take some time. Unfortunately, most of the general public is either unaware or uneducated about autism and can be quick to shame the parents when their child is acting out. Many blame it on poor parenting, wondering, “Can’t you control your child?” These negative social reactions can increase stress for the parents.
Oftentimes, learning to adapt to these daily challenges can be overwhelming for parents. As they put their child’s needs first, they do not stop to think about their own needs and mental health. These chronic stressors can have a severe impact on the mind and the body. High stress leads to anxiety and depression and can also wear down the immune, cardiovascular and gastrointestinal systems.
There are different ways parents can help reduce stress. One way is to direct your focus your attention on reality instead of the “what ifs.” It can be easy for parents to worry about their child and the challenges they may face. When you focus your attention on what you can control, stress levels can decrease.
According to one group of Canadian researchers who studied 283 Canadian women and their children with ASD, mothers whose children had the most challenging behavior experienced the most stress. But over time, mothers with particular coping strategies had less stress. The moms who focused on getting help, solving problems, and finding meaning in their experiences weathered the parenting storms the best. Moms who tended to avoid their problems and emotions – called “disengaged coping” – suffered more stress.
They say “it takes a village” to raise a child. When raising a child with autism, you may need to lean on that village a little more. Don’t be afraid to ask family members, close friends, and use other resources for additional help. Those who have access to a solid support system are less likely to experience stress.
Another way to reduce stress is to make sure your child is receiving the help they need. When you know they are getting the best care, you can rest assured. And when one intervention does not work, don’t be discouraged to try another.
Lastly, seek help from a professional. It is important to prioritize your mental health and there are many treatment options, including low-cost parent support groups, that can offer support and mindfulness to caregivers of children with autism.