Children who cope with Autism Spectrum Disorder (ASD) face a broad range of neurological, physiological, and psychological symptoms. While the focus is generally on understanding ASD, providing support, and accommodations, and creating greater awareness of the disorder, perhaps an overlooked concern is the issue of parenting children with ASD.
“I believe that an important, overlooked factor contributing to stress levels in parents of children with autism spectrum disorder (ASD) is the degree to which they feel their child suffers, per the old maxim, supported by Fingerman (2011), that “you’re only as happy as your least happy child”…From the published literature we know that parents of children with autism worry about everything from lifetime dependency to family disharmony, from support networks to societal acceptance; we know that these parents are aggravated and angry and that the parents of children with more aberrant behaviors feel more stressed than parents of children with fewer aberrant behaviors.”
As its name suggests, the diagnosis of Autism is really a condition that has an enormous range of symptoms that affect the individual’s abilities to communicate and interact with others. This is why the name has changed from Autism to Autism Spectrum Disorder.
Autism spectrum disorder (ASD) is the name for a group of developmental disorders. ASD includes a wide range, “a spectrum,” of symptoms, skills, and levels of disability. People with ASD often have these characteristics:
- Ongoing social problems that include difficulty communicating and interacting with others
- Repetitive behaviors as well as limited interests or activities
- Symptoms that typically are recognized in the first two years of life
- Symptoms that hurt the individual’s ability to function socially, at school or work, or in other areas of life
While some individuals experience only a mild form of the condition, others can experience it as highly intrusive and far more complex to cope with. Previously, Asperger’s Syndrome and Autistic Disorder were considered to be separate diagnoses, but this is no longer true. In the DSM-V, both of these come under the definition of Autism Spectrum Disorder.
ASD is unique in that it is common for people with ASD to have many strengths and abilities in addition to challenges. Strengths and abilities may include:
- Having above-average intelligence – the CDC reports 46% of ASD children have above-average intelligence
- Being able to learn things in detail and remember information for long periods of time
- Being strong visual and auditory learners
- Excelling in math, science, music, or art
But, just as the child deals with their condition, so too do their parents. In the beginning, parents are challenged by having to sift through the enormous amount of information currently available on ASD. There are choices to make around treatment, education, and day-to-day parenting issues that may feel overwhelming. Parents can easily experience a high degree of stress when trying to cope with the decision-making process. There may be other concerns such as the child’s behavior which can possibly include: irritability, aggression, hyperactivity, repetitive behavior, anxiety, or attention problems. However, it’s vital to state that not all children with ASD experience all these problems, and some may have such a mild form that they experience very few symptoms, or symptoms to a minimal degree.
Parents of a child with ASD may also feel the challenge to create a balancing act if they have more than one child. Their other children might feel as if their needs are being neglected due to the needs of their sibling with ASD. This, in turn, could lead to sibling rivalries and increased tension in the home. While it’s likely that many (perhaps most) siblings will be gracious, loving, and understanding, there is still the possibility that some siblings will feel left out.
Another parental concern is to put a “team” together who can assist them with key decisions. These can include ASD specialists, the G.P., teachers, teacher aides, physiotherapists, counselors/psychologists, and others. Given that we are learning more about ASD than we ever knew before, this new information will, in turn, help to guide parental decisions.
Parents of children with ASD may also face financial concerns that challenge their ability to provide the services and support their child requires. This can generate the necessity to find grants and other funds which also requires even more time. It’s not unusual that one parent may not be able to work in favor of staying at home to provide the level of support their child requires. In Canada, Disability Credit Canada assists families where a child has ASD. The Child Disability Tax Credit can help. It is a tax-free benefit for families that care for a child under 18 who suffers from a severe prolonged impairment of their physical and/or mental functions.
Additional stressors for parents can include concerns over their child’s ability to socialize with others in school and recreation, worry over disapproval from other parents, concern over their lack of knowledge of ASD, and fears their child may be bullied in school. Research demonstrates that some parents of children with ASD have poorer health outcomes due to high levels of stress. Other issues for parents are having to deal with peoples’ ignorance about ASD, and trying to cope with those prejudicial misperceptions. They may also find it challenging to access the support and interventions their child requires depending on where they live. Families who live in small, rural areas will likely find it more difficult to access services and support than families who live in large, urban centers.
In the end, however, families embrace their children and the joys of loving and cherishing their children will far outweigh the challenges they face over the years.