Search This Site

The Extraordinary Demands Placed on Parents Raising Kids on the Spectrum

"Is it normal (or selfish of me) to feel a sense of sadness and disappointment now that we have learned our son has autism (high functioning)? How do you cope effectively with these demands - and the stress - of raising a special needs child? I need a big dose of strength right now... been a bad day :( "

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.

==> How To Prevent Meltdowns and Tantrums In Children With High-Functioning Autism and Asperger's

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.

==> Parenting System that Significantly Reduces Defiant Behavior in Teens with Aspergers and High-Functioning Autism
 
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

 ==> Teaching Social Skills and Emotion Management to Children and Teens with Asperger's and High-Functioning Autism

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



More resources for parents of children and teens with High-Functioning Autism and Asperger's:

==> Launching Adult Children with Asperger's and High-Functioning Autism: Guide for Parents Who Want to Promote Self-Reliance

==> Parenting Children and Teens with High-Functioning Autism: Comprehensive Handbook

==> Unraveling The Mystery Behind Asperger's and High-Functioning Autism: Audio Book


==> Parenting System that Reduces Problematic Behavior in Children with Asperger's and High-Functioning Autism

Assessing Asperger’s and High-Functioning Autism: Tips for Clinicians

Developmentally-based assessments of cognitive, communicative, and other skills provide information important for both diagnosis and program planning for kids with Asperger’s Syndrome (AS) and High-Functioning Autism (HFA). Careful documentation of a youngster’s unique strengths and weaknesses can have a major impact on the design of effective intervention programs and is particularly critical due to the fact that unusual developmental profiles are common.

Given the multiple areas of difficulty, the efforts of experts from various disciplines are often needed (e.g., audiology, neurology, pediatrics, physical and occupational therapy, psychiatry, psychology, speech and language pathology). The level of expertise required for effective diagnosis and assessment may require the services of professionals other than those usually available in a school setting.

In some cases, psychological and communication assessments can be performed by existing school staff, depending on their training and competence in working with kids with AS and HFA. However, other services (e.g., management of seizures, drug therapy, genetic testing, etc.) are managed in the health care sector. Some kids may fall between systems, and therefore not be served well.



Several principles underlie assessment of a youngster with AS or HFA:

1. A developmental perspective is important. Given the strong association of mental retardation with Autism Spectrum Disorders, it is important to view results within the context of overall developmental level.

2. Behavioral difficulties must be considered, since they affect both the youngster’s daily functioning and considerations for intervention.

3. Functional adjustment should be assessed. Results of specific assessments obtained in more highly structured situations must be viewed in the broader context of a youngster’s daily functioning and response to real-life demands. The youngster’s ability to translate skills into real world settings is particularly critical.

4. Multiple areas of functioning should be assessed, including current intellectual and communicative skills, behavioral presentation, and functional adjustment.

5. Social dysfunction is probably the most defining feature of AS and HFA, so it is important that the effect of a youngster’s social challenges on behavior be considered.

6. Variability of behavior across settings is typical. Behavior of a youngster will vary depending on such aspects of the setting as novelty, degree of structure provided, and complexity of the environment. Thus, observation of facilitating and detrimental environments is useful.

7. Variability of skills is typical, thus it is important to identify a youngster’s specific profile of strengths and weaknesses rather than simply present an overall global score. Similarly, it is important not to generalize from an isolated skill to an overall impression of general level of ability, because such skills may grossly misrepresent the youngster’s typical abilities.

Various diagnostic instruments can be used to help structure and quantify clinical observations. Information can be obtained through observation (e.g., Autism Diagnostic Observation Scale) as well as the use of various diagnostic interviews and checklists (e.g., Autism Diagnostic Interview-Revised; Childhood Autism Rating Scale; Autism Behavior Checklist; Aberrant Behavior Checklist). An adequate assessment will involve both direct observation and interviews of mothers, fathers and educators.

The range of symptoms in AS is quite broad and spans the entire range of IQ. A diagnosis can be made in a low-functioning youngster as well as in a youngster who is intellectually gifted. In addition, children with AS vary along a number of other dimensions (e.g., levels of communicative ability, degree of behavioral difficulties, etc.). As a result, in working with the youngster, considerable expertise is required. Clinicians must consider the quality of the information obtained (both in terms of reliability and validity), the involvement of mothers/fathers and educators, the need for interdisciplinary collaboration, and the implications of results for intervention. Coordination of services and facilitating discussion between members of assessment/treatment teams and mothers/fathers is critical.

A range of components must be part of a comprehensive educational evaluation of kids with AS and HFA. These include:
  • communicative assessment
  • consultation regarding aspects of motor, neuropsychological, or other areas of functioning
  • medical evaluation
  • obtaining a thorough developmental and health history
  • psychological assessment

This information is important both to diagnosis and differential diagnosis and to the development of the IEP.

The psychological assessment should establish the overall level of cognitive functioning as well as delineate a youngster’s profiles of strengths and weaknesses. This profile should include consideration of a youngster’s ability to remember, solve problems, and develop concepts. Other areas of focus in the psychological assessment include:
  • social cognition
  • play
  • motor and visual-motor skills
  • adaptive functioning

Kids with AS and HFA will usually need to be observed on several occasions during more and less structured periods.

The choice of assessment instruments is a complex one and depends on the youngster’s:
  • ability to cope with transitions in test activities
  • ability to respond to complex instructions 
  • ability to respond to social expectations
  • ability to work rapidly
  • level of verbal abilities

Kids with AS and HFA often do best when assessed with tests that require less social engagement and less verbal mediation. In addition to the formal quantitative information provided, a comprehensive psychological assessment will also provide a considerable amount of important qualitative information. It is important that the clinician be aware of the uses and limitations of standardized assessment procedures and the difficulties that these kids often have in complying with verbal instructions and social reinforcement. Operant techniques may be helpful in facilitating assessment.

Difficulties in communication are a central feature of AS and HFA, and they interact in complex ways with social deficits and restricted patterns of behavior and interests in a given child. Accurate assessment and understanding of levels of communicative functioning is important for effective program planning and intervention. Communication skills should be viewed in a broad context of the child’s development. Standardized tests constitute only one part of the assessment of communication abilities in young people with AS and HFA. The selection of appropriate assessment instruments, combined with a general understanding of these disorders, can provide important information for purposes of both diagnostic assessment and intervention.

In addition to assessing expressive language, it is critical to obtain an accurate assessment of language comprehension. The presence of oral-motor speech difficulties should be noted. In kids with AS and HFA, the range of communicative intents may be restricted in multiple respects. Delayed and immediate echolalia are both common and may have important functions. In addition, various studies have documented unusual aspects even of very early communication development in AS and HFA.

In assessing language and communication skills, parent interviews and checklists may be used, and specific assessment instruments for kids with AS and HFA have been developed. For kids under age 3, scores on standardized tests may be particularly affected by difficulties in assessment and by the need to rely on parent reports and checklists. For preverbal kids, the speech-communication assessment should include observation of a youngster’s level of awareness of communication from others, the youngster’s sense of intentionality, the means used for attempting communication, and the quality and function of such means, sociability, and play behaviors. The clinician should be particularly alert to the youngster’s capacity for symbolic behavior since this has important implications for an intervention program.

There are also several standardized instruments that provide useful information on the communication and language development of pre-verbal kids with AS and HFA. These include:
  • Mullen Scales of Early Learning
  • MacArthur Communicative Development Inventor
  • Communication and Symbolic Behavior Scales

For kids with some verbal ability, social and play behaviors are still important in terms of clinical observation but various standardized instruments are available as well, particularly when the youngster exhibits multi-word utterances. Areas to be assessed include:
  • articulation
  • expressive language and comprehension
  • morphology
  • pragmatics
  • prosody
  • receptive and expressive vocabulary
  • semantic relations
  • syntax

The choice of specific instruments for language-communication assessment will depend on the developmental levels and chronological age of the youngster. Additional observations may address aspects of topic management and conversational ability, ability to deal with non-literal language, and language flexibility. The clinician must be flexible and knowledgeable about the particular concerns related to assessment of kids with AS and HFA.

Motor abilities may represent an area of relative strength for a youngster, but as time goes on, the development of motor skills in both the gross and fine motor areas may be compromised, and motor problems are frequently seen in young kids with AS and HFA. Evaluations by occupational and physical therapists are often needed to document areas of need and in the development of an intervention program. Standardized tests of fine and gross motor development and a qualitative assessment of other aspects of sensory and motor development, performed by an expert in motor development, may be helpful in educational planning.


More resources for parents of children and teens with High-Functioning Autism and Asperger's:

==> How To Prevent Meltdowns and Tantrums In Children With High-Functioning Autism and Asperger's

==> Parenting System that Significantly Reduces Defiant Behavior in Teens with Aspergers and High-Functioning Autism

==> Launching Adult Children with Asperger's and High-Functioning Autism: Guide for Parents Who Want to Promote Self-Reliance

==> Teaching Social Skills and Emotion Management to Children and Teens with Asperger's and High-Functioning Autism

==> Parenting Children and Teens with High-Functioning Autism: Comprehensive Handbook

==> Unraveling The Mystery Behind Asperger's and High-Functioning Autism: Audio Book


==> Parenting System that Reduces Problematic Behavior in Children with Asperger's and High-Functioning Autism

My child has been rejected by his peers, ridiculed and bullied !!!

Social rejection has devastating effects in many areas of functioning. Because the ASD child tends to internalize how others treat him, rejection damages self-esteem and often causes anxiety and depression. As the child feels worse about himself and becomes more anxious and depressed – he performs worse, socially and intellectually.

Click here to read the full article…

How to Prevent Meltdowns in Children on the Spectrum

Meltdowns are not a pretty sight. They are somewhat like overblown temper tantrums, but unlike tantrums, meltdowns can last anywhere from ten minutes to over an hour. When it starts, the Asperger's or HFA child is totally out-of-control. When it ends, both you and your child are totally exhausted. But... don’t breathe a sigh of relief yet. At the least provocation, for the remainder of that day -- and sometimes into the next - the meltdown can return in full force.

Click here for the full article...

Parenting Defiant Teens on the Spectrum

Although Aspergers [high-functioning autism] is at the milder end of the autism spectrum, the challenges parents face when disciplining a teenager on the spectrum are more difficult than they would be with an average teen. Complicated by defiant behavior, the teen is at risk for even greater difficulties on multiple levels – unless the parents’ disciplinary techniques are tailored to their child's special needs.

Click here to read the full article…

Older Teens and Young Adult Children with ASD Still Living At Home

Your older teenager or young “adult child” isn’t sure what to do, and he is asking you for money every few days. How do you cut the purse strings and teach him to be independent? Parents of teens with ASD face many problems that other parents do not. Time is running out for teaching their adolescent how to become an independent adult. As one mother put it, "There's so little time, yet so much left to do."

Click here to read the full article…

Parenting Children and Teens with High-Functioning Autism

Two traits often found in kids with High-Functioning Autism are “mind-blindness” (i.e., the inability to predict the beliefs and intentions of others) and “alexithymia” (i.e., the inability to identify and interpret emotional signals in others). These two traits reduce the youngster’s ability to empathize with peers. As a result, he or she may be perceived by adults and other children as selfish, insensitive and uncaring.

Click here
to read the full article...

Highly Effective Research-Based Parenting Strategies for Children with Asperger's and HFA

Become an expert in helping your child cope with his or her “out-of-control” emotions, inability to make and keep friends, stress, anger, thinking errors, and resistance to change.

Click here for the full article...

My Aspergers Child - Syndicated Content