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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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Siblings of Aspergers Children

"I would like some tips on how to teach a younger sibling (age 3, not in school yet due to rural location) not to pick up unwanted behaviours from his Asperger's brother."

You might be concerned that your 3-year-old will pick up unwanted behaviours because he might have Asperger’s, also. Asperger’s does, indeed, have a genetic component.

New research in the area of Asperger’s has shown that toddler siblings of Asperger's children are more likely to exhibit the same atypical behaviours as their brothers and sisters with the Asperger's, even when they don’t eventually develop the disorder. Andy Shih, PhD, of the Baby Sibling Research Consortium, states that this increases the importance of careful monitoring of high-risk siblings of children with Asperger’s for any signs of a disorder. If one should occur, you are well-situated for early intervention. If atypical behaviours occur, but there is no Asperger’s, you will feel relief at knowing that your second child does not have it.

If you have a child with Asperger’s, the odds are 50 to 100 times greater that your second child will be diagnosed with Asperger’s. At the age of three, it might be difficult to tell if the child has Asperger’s. 

Ask yourself the following:
  • Does your younger son have age-appropriate communication skills?
  • Does he follow his brother’s exact behaviours?
  • Is he overreacting to sensory stimuli (e.g., actions, lights, sounds)? 
  • Does he cover his eyes or ears to avoid sensory stimuli?

If you answered “no” to these questions, your son is probably just imitating his older brother, and that is very common with siblings. He might see his older brother as a role model, or he sees his brother getting a lot of attention for these behaviours, and he is imitating him to get some of the attention.

If you answered “yes” to the above questions, consider having a professional, such as an Intervention Specialist or special education teacher, observe your three-year-old when he interacts with his brother, and when he is alone. You might be thinking of waiting to see if your son outgrows these behaviours; however, if he does have Asperger’s, you should begin early intervention. Make sure that the professional you consult is experienced in assessing autism spectrum disorders, and that his experience specifically includes Asperger’s Syndrome.

Your awareness of the sibling relationship, along with the help of a professional, will give you information and assistance to help with your three-year-old, if he, too, is diagnosed with Asperger’s. Stay in touch with the professional involved so that you can provide a comprehensive level of care for both your children.

The Parenting Aspergers Resource Guide: A Complete Resource Guide For Parents Who Have Children Diagnosed With Aspergers Syndrome
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Amazing Parenting Tricks for Raising Children on the Autism Spectrum

Amazing or not, raising a child with Aspergers or high functioning autism (HFA) will take a few "tricks of the trade" that you wouldn't need to have "up your sleeve" were you raising a "typical" child. If you are at your wits end - and need a few fresh ideas in dealing with behavioral issues, then take notes:

1. When it comes to getting your youngster to do chores, consider the "hiring a substitute" method. Your child may choose to hire someone to do his chore (e.g., by paying a wage of $1.00 he has saved from an allowance), or mutually agree to trade chores with a sibling.

2. Have your child rehearse new behaviors. In addition to telling your child the correct way to do something, have him/her rehearse it (e.g., dealing with bullies, not slamming the door when entering a room, walking through the house rather than running).



3. Ignore behavior that will not harm your son or daughter (e.g., bad habits, bad language, arguing with a sibling). It's hard to do nothing, but this lack of attention takes away the very audience your youngster is seeking.

4. Most children on the autism spectrum have trouble with transitions. Discuss in advance what is expected. Give plenty of warnings. Have the youngster repeat out loud the terms he just agreed to. Some kids need to negotiate for that "can I have one more minute?" A little extra patience on the parent’s part may help avoid a useless meltdown.

5. Parents can be decisive. Some parents have always been indecisive about what course of action to try with their child. They jump from one parenting technique to the other without giving any one technique enough time to be effective, or they try a new parenting technique once and then give up in frustration because it didn’t work. Some parents will say, “We’ve tried everything and nothing works with this kid.” What I usually see is parents floating from one parenting tool to another without sticking with one particular tool for a significant period of time.

6. Parents can practice humility. When you are wrong, quickly admit this to your child. This will model (a) making amends and (b) that it’s safe to make mistakes. “Admitting your mistakes” teaches your child to respect others.

7. Parents can use ‘reverse’ psychology. For example, “That’s not like you …you’re able to do much better.” This line works because your kid will live up – or down – to your expectations.

8. Parents can use humor to deal with family-stress. For example: Instead of reacting to your kid's temper tantrum, start singing, “The hills are alive with sound of music…”

9. Post a list of jobs that need to be done, such as washing the car, weeding the garden, etc. Let your child choose a "work detail" as a way to "make up" for rule violations.

10. Remember that Aspergers and HFA kids want structure. Most of them are actually starved for structure – it helps them feel safe.

11. Sometimes (depending on the child’s temperament), one of the worst things a parent of an autistic child can say is, "If you do that one more time, you'll be disciplined." You may find that your youngster will be irresistibly drawn to do just that, at once -- whether because you've set an impulse in motion, because he can't deal with the stress of waiting for the other shoe to drop, or because he gets stuck on what you've said. Instead of specifying “one more time,” try saying, "I have a number of times in my head, and you're not going to know what that number is. But when you hit that number, you will get a punishment." This gives your youngster a few extra chances if he seems to be trying without going back on a threat, and  it gives him a little comfort zone to know that he can slip-up once or twice. Some children will dislike the uncertainty of this approach, and for them, this might not be the best strategy. But if certainty is more pressure than your youngster can handle, this trick may be helpful in most cases.

12. Tell your youngster your predictions regarding the negative outcomes of his poor choices (use labels when needed). For example: “If you continue to steal, people will call you a ‘thief’, and when things come up missing, they will blame you.” -- or -- "If you continue to lie, people will call you a ‘liar’, and even if you tell them the truth, they won't believe you." When your predictions come true, your child will begin to trust your judgment.

13. The life of a youngster on the spectrum can often be overwhelming. The treatment for his over-reaction is to defuse the situation, not inflame it. When tempers flare, allow everyone to cool off. Remember, the parent may have to cool off as well. Serious discussion can only occur during times of composure. Remember: “bad” behavior usually occurs because the child is spinning out of control, not because he is evil.

14. Think of your youngster as a train with an “anxiety speedometer.” When that speedometer reaches 70 mph, it’s going to take a long time to stop that train. The goal is to keep your child from coming anywhere close to 70 mph. Now, imagine you enter the room when the youngster is at an anxiety level of 50 mph. For your child, the stress of the current situation is getting to him. What can you do to slow that train down before it gathers momentum? Laugh, divert, distract, negotiate, or anything else you can think of – and the speedometer comes down to 30 mph (assuming you have cleverly disguised your intervention).

15. Tie what you 'want' to what he 'needs' (e.g., "When you come home from school on time, then you can have a friend over").

16. When behavior starts turning ugly, redirect to a positive direction rather than criticizing the “misbehavior” (e.g., if your youngster is fighting with a sibling, then suggest a new activity like having a snack, rather than handing out a consequence).

17. Do not shield your youngster from the results of her choices unless it puts her in danger. For example:
  • Child doesn’t go to bed on time >>> she gets up and goes to school anyway even though she’s tired and sleepy
  • Child doesn’t study for her math test >>> she fails
  • Child doesn’t maintain her bicycle >>> it falls apart and she walks thereafter

18. Consequences can be by parental design. For example:
  • Child leaves her toiletries in disarray throughout the bathroom each school morning >>> after forewarning is ignored, parent confiscates all items for a period of time (technique works with clothes and toys as well)

19. Parents can rearrange space. Try creative solutions. For example:
  •  If school notes and homework are misplaced, assign a special table or counter for materials
  • If chores are forgotten, post a chart with who does what when

20. Parents can use adjustment. Here are several ways to adjust:
  • Realize the same discipline may not work in all situations because of the unique features of the disorder.
  • Try to blend a combination of several parenting tools to create a more effective discipline.
  • Don’t believe it when your child seems unaffected by discipline. Kids on the spectrum often pretend discipline doesn’t bother them. Continue to be persistent with your planned discipline, and consider yourself successful by keeping your parenting plan in place. When a child pretends a discipline doesn’t bother him, parents often give up on a discipline, which reinforces the child’s disobedience. Remember, you can only control your actions, not your child’s reactions.

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