Asperger’s Syndrome and Family Stress
The love of a family is life’s greatest blessing.
“As a challenge to the family, autism must rank among the most stressful of childhood developmental disabilities,” concluded one Australian study. “An affected child’s communication, emotional expression, and antisocial behaviors combine to place a tremendous strain on families. The more extreme the behaviors, from self-injury to frequent meltdowns, the tougher the challenge.” (Autism Speaks)
Although this quote concerns autism, it is every bit as relevant to families where one or more children have Asperger’s Syndrome, considered a milder form of autism.
What challenges do parents experience when a son or daughter has Asperger’s? Here is a list that I’ve accumulated from my years of experience as an Asperger’s psychologist.
At the top of that list is learning to accept one’s child as different. A child with Asperger’s is one who at times is substantially different from other children. For parents, this means having to alter their expectations of what their family will be like and what it means to be a parent, as their child grows up.
For some parents, the reality of having a child with Asperger’s generates a troubling sense of self-blame. Commonly, children’s difficulties are assumed to be caused by parental failings. If it were not for what we do as parents our children wouldn’t be the way they are, is a familiar belief. Consequently, many parents fault themselves for the actions of their Asperger’s child. The fact that Asperger’s has a strongly genetic foundation makes parental self-blame all the more likely.
Coping with Difficult Behavior
Meltdowns and aggression on the child’s part are additional sources of parental stress. It’s exhausting to deal with tantrums, antagonism, combativeness, hostility and assaults. Children might not always be able to control these behaviors, nevertheless, they put a great deal of strain on parents.
Many of the parents I talk with as an Asperger’s psychologist name coping with difficult behavior as their most frustrating task.
Social isolation of the entire family is one consequence of aggressive behavior, as parents stick close to home so as to avoid risking the child acting out in public and also to ensure the child has the calming effect of a familiar environment. Many times, the public’s lack of understanding of Asperger’s creates a problem for parents who blame their child’s difficulties on misunderstanding and interference by the outside world.
Getting the Right Services
Finding appropriate services for their child with Asperger’s is a major source of frustration for many parents. Obtaining, managing and paying for multiple treatments, such as social skills training, academic tutoring, medication treatment, and psychotherapy are typically burdensome.
In some cases, the early intervention services that foster developmentally appropriate skills in children with Asperger’s are not available or are too costly. Adding insult to injury, insurance companies may not pay for services they consider non-medical or unnecessary, increasing the burden and stress on parents.
Services for parents may not be available as well. For many parents, connecting with and being around other parents who also have children with Asperger’s is quite helpful. Yet it is often the case that finding a venue to interact with other parents is difficult, adding to an already stress environment.
Coping with Difficult Feelings
Self-blame is not the only reaction that parents contend with. Guilt, anger, resentment, anxiety, depression and grief sometimes enter the picture. The complications of parenting a child with Asperger’s make it hard to feel like life is simple and uncomplicated.
One common feeling that parents experience is denial. Not just parents but also siblings can convince themselves that things are not as bad as they are. Often, believing things are fine and that everything’s going to be normal in just a short time is a tempting way to cope with the strain of Asperger’s. While in some cases it represents an understandable, even healthy coping mechanism, the unrealistic nature of denial taken too far makes matters worse.
As an Asperger’s psychologist, I have found parental denial to be among the most difficult barriers in the way of helping children and families cope with this condition.
Worry About the Future
What parent doesn’t wonder about their child’s future? When that child has Asperger’s, however, wondering often turns to worry.
Will my child be able to live independently, become employed, have a romantic relationship, and have children sometime in the future is a question on the minds of many of these parents.
The prospect of their child living with them well into adulthood is worrisome to many parents who face giving up their own independence and freedom in order to cope with the effects of Asperger’s.
It may be that more parents feel stressed about their child’s future than any other issue they face.
Success is Possible
If you are a parent of a child with Asperger’s here is one suggestion. Try to separate your child from the challenges of Asperger’s. Asperger’s is not your child, it is a condition your child lives with.
Both you and your child have to deal with that condition, but you can always find ways to make having Asperger’s work to your child’s advantage. Plenty of people without Asperger’s have a difficult time and in the end, life is only as successful as you make it.
Dr. Kenneth Roberson is an Asperger’s psychologist in San Francisco with over 30 years of experience. To ask a question, or schedule an appointment,
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