The Extraordinary Demands Placed On Parents Raising Asperger's

Moms and dads of kids with Asperger?s Syndrome (AS) and High-Functioning Autism (HFA) play multiple roles. Often, they are the first adults to recognize a developmental problem, and they should pursue their concern until they receive a diagnosis and find services for their youngster. Once they become involved in a treatment program, moms and dads should be active partners in their youngster?s treatment process to ensure that skills learned in therapy transfer to the home-setting, school, and community at large. As members of the individualized education plan (IEP) team, moms and dads should also be active advocates for the youngster, ensuring that the educational process goes forward smoothly.

These many demands on moms and dads occur in the context of family life, including the needs of siblings, parents as individuals and as a couple, and family needs as a whole. In addition, the parents of AS and HFA? kids may experience sadness, anger, disappointment, or other complex emotions that can accompany the initial discovery that their youngster has a developmental problem and the ongoing need to make sacrifices to serve the needs of their youngster. Most families cope effectively with these demands, but some may encounter significant stress as they raise their AS and HFA youngster.

Specific knowledge, skills, and scientifically-based information about Autism Spectrum Disorders and their treatment are needed. The mastery of specific teaching strategies that enable parents to help their youngster acquire new behaviors and an understanding of the nature of AS and HFA and how it influences their youngster?s learning patterns and behavior is paramount. Moms and dads also need to be familiar with special education law and regulations, available services, and how to negotiate on behalf of their youngster. Furthermore, some parents need help coping with the emotional stress that can follow from having a special needs youngster.

The fact that parents serve a key role in effective treatment for their youngster is not without costs, and the implications for family life are considerable. Many moms and dads face multiple, demanding roles. Research suggests that while many families cope well with these demands, the education of a youngster with AS and HFA can be a source of considerable stress for some families. In general, moms report more stress than do dads, often describing issues related to time demands and personal sacrifice. Among specific concerns expressed by moms are:

• the community?s acceptance of their youngster
• the youngster?s ability to function independently
• worry about their youngster?s welfare in the years ahead

Moms of kids on the spectrum also report more stress in their lives than do moms of kids with other disabilities (e.g., ADHD).

Dads of kids on the spectrum report more disruption of planning family events and a greater demand on family finances than do dads whose kids are developing typically. These three groups of males do not differ, however, on measures of perceived competence as a father, marital satisfaction, or social support.

In a study of families who had a boy on the spectrum under the age of 6 referred to the TEACCH (Treatment and Education of Autistic and Related Communication Handicapped Kids) program, studies found that, while dads assumed some role in the youngster?s care, moms carried a much greater burden. This difference was not due solely to employment outside of the home. Moms who worked in jobs outside of the home still had greater childcare burdens than their employed spouses. The study also found that meaningful support from one?s spouse was an important predictor of the quality of parenting in the home.

The time spent working with a youngster with AS and HFA is sometimes stressful and demanding, but it also has the potential to reduce family distress and enhance the quality of life for the entire family ? including the youngster on the spectrum. Techniques like individualized problem solving, in-home observations and training, and didactic sessions have been employed with families. Moms who learned skills based on the TEACCH model of education for their youngster showed a decrease in depressive symptoms over time in comparison with a group of moms not given this training.

One study found that teaching moms and dads how to use pivotal response training as part of their applied behavioral analysis instruction resulted in happier parent-child interactions, more interest by the moms and dads in the interaction, less stress, and a more positive communication style. The use of effective teaching methods for a youngster with AS and HFA can have a measurable positive impact on family stress. As the youngster?s behavior improves and his skills become more adaptive, families have a wider range of leisure options and more time for one another. To realize these gains, the mother and father must continue to learn specialized skills enabling them to meet their youngster?s needs.

Many moms and dads can learn to cope with the demands of parenting a youngster with AS and HFA once they learn about the emotions with which they are dealing with ? and how to address them. Not all moms and dads experience these feelings. However, it is helpful for them to be aware of the various emotions involved ? and to realize that their experiences and feelings are normal.

Sorrow:

• Hopes and plans for youngster's future
• Lifestyle prior to youngster's birth or diagnosis
• Loss of the "perfect youngster" that was anticipated prior to the birth or diagnosis

Resentment:

• Toward the educational system
• Medical system
• Religious belief system
• Themselves, spouse, youngster
• Treatment team

Remorse:

• Youngster's suffering
• Less attention toward other kids
• Less focus on self
• Relationship with spouse
• Unable to protect youngster

Feelings of Loneliness:

• No one else understands what they are going through
• Avoid having to explain youngster's conditions and answer questions
• Can sense that others are uncomfortable around youngster
• Depressed
• Difficulty meeting youngster's needs outside of home
• Financially unable to do activities
• Lack of accommodations
• Not wanting to interact with others
• Resentment toward others with "typical kids"
• Unable to leave home

Low Sense of Self-Worth:

• Right parenting decisions under normal circumstances may not work for youngster due to AS/HFA
• Interactions with many therapists who assign various labels and diagnoses of youngster

Worries:

• Youngster's future
• Educational needs
• Ability to live independently when older
• Safety
• Stable relationship with spouse
• Own mental health
• Next crisis

Anxiety:

• Advocating for accommodations
• Attempting to meet needs of other family members
• Balancing career and family
• Dealing with insurance coverage and financial concerns
• Dealing with other's reactions and opinions
• Decrease in support system
• Lack of accommodations for youngster
• Lack of exercise
• Lack of prior medical or advocacy experiences
• Learning details of youngster's disorder and about related treatment
• Making choices regarding youngster's treatment
• Managing appointments for various professionals
• Managing time
• Poor eating habits
• Sleep deprivation
• Some parents may become forgetful, miss appointments, and experience other symptoms of stress
• The youngster's Individualized Education Plan (IEP)

Feeling Isolated:

• Detachment in other areas of life due to focus on youngster's needs
• Feelings of despair and hopelessness
• Over-involvement in work or other activities

How can moms and dads care for themselves and move forward?

Find a support system:

• Locate a counselor to address feelings
• Locate a support group
• Meet and interact with other families of kids with AS/HFA
• Re-establish relationship with spouse
• Seek discussion boards on the internet
• Surround self with nurturing individuals that are accepting of youngster and parenting choices
• Utilize a treatment team that is supportive and empowers moms and dads to make choices that are right for their family

Find Balance:

• Alone time with spouse
• Exercise
• Find enjoyable social activities
• Fun activities as a family
• Meditate
• Use a baby sitter
• Work outside of home

Read:

• Enjoyable books/magazines
• Books by other moms and dads of kids with AS/HFA

Recognize Positive Features of Youngster and Life:

• Involvement in other kid's lives
• Realize own wisdom and strength
• Recognize that the youngster is a fighter
• See gains the youngster has made

Love the Youngster for the Person He Is:

• Acknowledge youngster as an individual who may have different life goals
• Identify what youngster has instead of what she does not have
• Learn to accept youngster for who she is

Other Ideas:

• When feelings of crisis have passed, attempt to focus on things that can be controlled instead of those that can't be controlled
• Use religious/spiritual resources and beliefs
• Remember that taking care of yourself is important to you and your youngster
• Remember that it is the journey that counts ? not the destination
• Recognize that different treatment options work for different kids and different families
• Practice assertiveness skills with treatment team, family, friends, and people in the community
• Gain understanding that life is about change
• Attempt to focus on the present instead of the future

The Aspergers Comprehensive Handbook

Source: http://www.myaspergerschild.com/2012/11/the-extraordinary-demands-placed-on.html

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