Asperger’s and Family Support: Tips for Health Care Professionals and Parents

Effective management of Asperger’s (AS) and High Functioning Autism (HFA) should focus not only on the affected youngster, but also on the family. Although moms and dads once were viewed erroneously as the cause of a youngster's Autism Spectrum Disorder, it is now recognized that they play a major role in effective treatment.

Having a youngster on the autism spectrum has a significant effect on a family. Parents and siblings of autistic kids experience more stress and depression than those of kids who are “typically developing” – or even those who have other disabilities. Supporting the family and ensuring its emotional and physical health is an extremely important aspect of overall management of AS and HFA.



Doctors, therapists and other health care professionals can provide family support in the following ways: 
  • assisting parents in advocating for their AS or HFA youngster's special needs
  • assisting parents in advocating for the sibling's needs
  • assisting parents in obtaining access to resources
  • educating them about Autism Spectrum Disorders
  • providing anticipatory guidance
  • providing emotional support through traditional therapeutic techniques (e.g., empathetic listening, talking through problems, etc.)
  • training and involving parents as “co-therapists”

In some cases, referral of moms and dads for counseling or other appropriate mental health services may be required. The need for support is longitudinal, although the specific needs may vary throughout the family life-cycle.

One of the main techniques for assisting parents is to help them access needed ongoing supports and additional services during critical periods and/or crises. Such assistance includes natural, informal and formal supports.

Natural supports include: 
  • extended family members
  • friends who can help with care-giving and who can provide psychological and emotional support
  • neighbors
  • religious institutions
  • spouses

Informal supports include: 
  • community agencies that provide training
  • recreational activities
  • respite
  • social events
  • social networks of other parents of kids on the autism spectrum

Formal supports include:  
  • in-home and community-based waiver services
  • Medicaid
  • publicly funded, state-administrated programs (e.g., early intervention)
  • residential/living services
  • respite services
  • special education
  • Supplemental Security Income benefits
  • vocational services

The breadth and depth of services vary, even within the same state or region. Few services exist in many rural areas, and public programs may have long waiting lists.

Sibling support groups offer the opportunity to learn valuable information and skills while sharing experiences and connecting with other siblings of kids on the spectrum. Although the research on support groups for siblings of AS and HFA kids is difficult to interpret (due to study-design problems and inconsistent outcome effects on sibling adjustment), these groups generally have been evaluated positively by participating siblings and parents.

Because each state has organized its services and access mechanisms differently, health care professionals and parents must learn their own state's unique rules to access supports by contacting the state or county offices of the states’ Department of Health and Human Services, local mental health facilities, or the state developmental disabilities organization.

Also, school district special education coordinators, national autism and related developmental disability organizations, local parent advocacy organizations, and early intervention administrators often are knowledgeable about various programs and their respective eligibility requirements.


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
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The Value of a “Behavior Log”: Help for Children on the Autism Spectrum


Problematic emotional reactions and behaviors (e.g., aggression, meltdowns, self-injury, etc.) are common in kids and teens with Asperger’s (AS) and High Functioning Autism (HFA). In many cases, medical conditions may cause or exacerbate maladaptive behaviors. Recognition and treatment of these conditions may eliminate the need for medications (e.g., in the case of an acute onset of aggressive or self-injurious behavior, the source of pain can be identified and treated).

Some of the sources of physical discomfort that may cause or exacerbate maladaptive behaviors in AS and HFA children include the following:
  • allergic rhinitis (allergic inflammation of the nasal airways)
  • colitis (inflammation of the inner lining of the colon)
  • constipation
  • dental abscess
  • esophagitis (inflammation of the esophagus)
  • fractures
  • gastritis (inflammation, irritation, or erosion of the lining of the stomach)
  • headaches
  • otitis externa (inflammation of the outer ear and ear canal)
  • otitis media (middle ear infection)
  • pharyngitis (inflammation of the throat)
  • sinusitis (inflammation of the sinuses)
  • urinary tract infection



Additional sources of maladaptive behaviors may include the following:

1. A chronic illness or low-grade infection could make your child irritable.

2. A mismatch between behavioral expectations and cognitive ability of the youngster is often responsible for disruptive behavior. Adjustment of expectations is the most appropriate intervention. A functional analysis of behavior (completed by a behavior specialist in the settings in which the problems occur) will identify factors in the environment that exacerbate or maintain the maladaptive behavior. An intervention using behavioral techniques and environmental manipulations can then be formulated and tested.

3. Being hungry, tired, or thirsty can make your youngster cranky.

4. Changes in routine often impact behavior (e.g., parents going through divorce, a health crisis, a job change, a move, etc.).

5. Coordination problems can contribute to stress and behavior issues. If your youngster has trouble undoing buttons or zippers, the short time allotted for bathroom breaks at school can add tremendous stress. Also, when a child walks awkwardly, negotiating a crowded hallway between classes can be stressful.

==> How to Prevent Meltdowns and Tantrums in Children with Asperger's and HFA

6. Environmental factors often precipitate challenging behaviors (e.g., fluorescent lighting, foul smells, a room that is too cool or too warm, crowded hallways, etc.).

7. Look for possible sources of pain (e.g., teeth, reflux, gut, broken bones, cuts and splinters, infections, abscesses, sprains, bruises, etc.). Any behaviors that seem to be localized might indicate pain.

8. Maybe your child has no friends at school, so recess is particularly tough for him.

9. Obstructive sleep apnea can contribute to behavioral problems and may be amenable to weight reduction, tonsillectomy and adenoidectomy, or continuous positive airway pressure.

10.  Poor sleep or coming down with a cold could easily explain unusual behavior.

11.  Some behaviors (especially those that seem particularly odd or abrupt) may be due to seizures.

12.  Negative emotions (e.g., sorrow, anger, fear, anxiety, etc.) can have an impact on behavior.

13.  Flushed cheeks or diarrhea within a few hours of eating a particular food may indicate an allergy, which can in turn create behavioral issues. Try to identify any food allergies or sensitivities that might be bothering your youngster.

14.  When behavioral problems appear to be related to menstrual cycles in a teenage girl on the autism spectrum, use of an analgesic or oral or injectable contraceptive can be helpful.

15.  Your youngster may respond with disruptive behavior if he’s being overwhelmed by too much sensory information.

Many of the behaviors that kids with AS and HFA exhibit do not make obvious sense, because they don’t seem to serve any clear purpose (e.g., an unusual attachment to inanimate objects such as rubber bands and tooth pics). But parents and teachers should assume that “strange” behaviors like this do make some sense to the child. He or she is sending coded messages about things that are important to him or her. The trick is to break the code so that the messages can be “read.”


Behaviors That Should Not Be Punished Because They Are Part of the Disorder 



==> How to Prevent Meltdowns and Tantrums in Children with Asperger's and HFA

Here’s an effective way to begin to “read” the coded messages:

Start recording problematic behaviors (e.g., emotional outbursts). Does the child act-out when fluorescent lights are turned on in the kitchen? Is the child more likely to have outbursts during recess at school? What time do these events most often happen?

Most problematic behaviors are triggered by an event. Just as one might suddenly feel thirsty as he or she walks past a lemonade stand, there are “triggering events” in the AS and HFA child’s day that trigger difficult behaviors. Thus, it is helpful to use a behavior log to try to identify these trigger events for some of the child’s most difficult behaviors. Rather than looking at the behavior as “bad,” parents and teachers should look for how the context or environment is out of synch with the youngster.

A behavior log is useful in both the home and educational environment where the parent and teacher can monitor the behavior of AS or HFA child. The log allows the observer to identify some specific behavior demonstrated by the child and proceed to consider the best ways to correct any inappropriate behavior. Also, the log allows a monitoring of behavior of the child over a certain time frame before taking action on or against her (i.e., punishment) so that the right experience can be developed between disciplinarian and child.

A behavior log may contain any or all of the following: 
  • Child’s name
  • Period of monitoring 
  • Date of observation 
  • Time of observation 
  • Behavior observed 
  • Description of the specific disruptive incident
  • What was happening prior to the disruption
  • Actions taken to resolve the problematic behavior
  • Comments (e.g., possible interventions that were not used that may have helped the child to calm down, steps to take in the future to help avoid the problematic behavior, steps taken that seemed to have some positive effect, steps taken that seemed to worsen the situation, etc.).

From the above recorded information, the parent and/or teacher needs to study the "behavior trend" carefully before making any conclusions or recommendations. If insufficient data is collected, more observation should be made instead jumping to a hasty solution. This type of study is usually long-term (3-4 months) with a careful eye for details.

==> Videos for Parents of Children and Teens with ASD
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How to Avoid "Back-to-School" Meltdowns and Tantrums in Asperger's Kids

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