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Raising a Child on the Autism Spectrum: The Impact on the Family

A diagnosis of Asperger’s (AS) or High-Functioning (HFA) not only changes the life of the youngster diagnosed, but also that of parents and siblings. Many moms and dads of an AS or HFA youngster must deal with a significant amount of stress related to expensive therapies and treatments, therapy schedules, home treatments, managing job responsibilities, and juggling family commitments.

While some children on the spectrum and their families cope well with the additional challenges that autism brings, for many others, the impact can be overwhelming.  Children with AS and HFA face many issues (e.g., the persistent challenge of trying to “fit-in” with their peer group, frustration at not being able to express how they feel, daily anxiety because they can’t make sense of what is happening around them, etc.). As a result, these kids often develop stress-reducing behaviors that can make them appear odd and/or defiant. Some moms and dads even avoid taking their “special needs” youngster out to public places rather than face the reactions from those who don’t understand the disorder. This may cause not only the autistic youngster, but the entire family to become housebound.



Other stressors that often impact family life in various adverse ways include the following:

Financial Impact—

Parents of AS and HFA kids may face a significant financial burden. Autism-related expenses for treatment and therapies are very costly and may not be covered by some private health insurers. The copays moms and dads incur for office visits and medications may lead to financial debt. According to research, parents with an autistic youngster undergo an average loss of 14% in their entire family income. Working full-time becomes difficult for both the mother and father. So, they have to endure the increased expenses in spite of having a lowered household income. Full-time employment is crucial for providing health insurance. Thus, losing a full-time job often severely affects the family’s financial status.

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

Sibling Impact—

A youngster with AS or HFA also affects his “neurotypical” (i.e., non-autistic) brothers and sisters. The siblings experience many of the same stressors faced by their parents. In addition, moms and dads may not be able to offer them full parental-support, because they are engulfed in meeting the needs of the “special needs” youngster. These families often experience a more intense form of sibling rivalry than is seen in “typical” families. Then there is the challenge of trying to reduce the jealousy and resentment that results when so much attention is focused on one youngster, as well as the frequent limitations on doing common family activities.

Brothers and sisters of an AS or HFA child may suffer from being in a stressful environment, are often unable to socialize because of the difficulties at home, and may be unable to go out as a family. Some siblings become care-takers for their “special needs” sibling in an effort to help their mom and dad.

Parents and professionals alike often lose sight of the need to help siblings understand the disorder. These siblings need an opportunity to voice their questions, concerns, and emotions. An important issue is helping them identify their negative feelings as “normal” and reduce the guilt that often complicates their behavior toward their sibling. Learning that they are not alone in their situations and in their feelings is vital to a healthy attitude and the ability to cope. Thus, support groups for siblings of autistic kids can be very helpful.

Marital Impact—

A study in the Journal of Family Psychology states that moms and dads of kids on the autism spectrum had a 9.7% greater chance of getting divorced than other married couples. Marital stressors often include: financial stress, trying to find appropriate childcare, accepting their youngster’s diagnosis at different times and in different ways (which causes conflict), and not having time to spend together due to numerous commitments and inconsistent schedules.

Kids with “special needs” can drain enormous amounts of time, energy, and money. Marital problems are reported to be present to a greater degree because of the lack of time for nurturing the marriage – plus the frequent problem of moms and dads disagreeing on what needs to be done for the youngster.

Another source of marital stress is that often one parent is more effective in managing the difficult behaviors of the AS or HFA child. The reduced couple’s “quality time” together is especially problematic, because there is more that needs to be discussed and dealt with (e.g., feelings of grief and disappointment) that may never get processed. The ability to enjoy the positive features of the “special needs” youngster and to grasp what all family members gain from having to address the autism-related challenges can only take place after having grieved the loss of what parents and siblings had expected from that youngster at birth.

The first step to sorting out the difficulties arising in the marriage is understanding the way autism affects it. Family counseling can help moms and dads deal with communication and marital problems. Parents should also consider joining support groups where they can meet other moms and dads with autistic kids. Also, they must take care of themselves too, besides caring for their “special needs” youngster.




Emotional Impact—

Autism brings with it a lot of emotional ups and downs for the all family members, which start prior to the diagnosis and continue indefinitely. A study in the journal “Pediatrics” states that moms of kids on the spectrum often rated their status of mental health as fair or poor. Compared with the general population, their stress level was much higher. Besides having higher stress levels, moms of AS and HFA kids may experience:
  • Anger at themselves, spouse, or doctors
  • Despair because of the disorder’s incurable nature
  • Embarrassment over their youngster’s behavior in public
  • Feeling overwhelmed
  • Feeling socially isolated
  • Frustration at the difference between the parenting experience they are having and the one they had envisioned
  • Guilt from thinking that they may be responsible for their youngster’s disorder
  • Resentment toward their youngster – yet guilt due to the resentment

Moms and dads can become isolated, depressed, and emotionally and physically exhausted from looking after their AS or HFA youngster – and fighting for support. They may feel judged by society, guilty that their youngster is missing out on friendships due to social skills deficits, and frustrated at not knowing how best to help their child.  In some families, at least one parent can’t work due to care-taking responsibilities, which puts a financial burden on the family.  Often, AS and HFA children have disturbed sleep patterns, so they need constant supervision, which is physically exhausting.  As the child grows up, he may become too strong to handle if he throws a temper tantrum.  Some moms and dads believe that they will be the primary care-taker for life, and they are often worried about what will happen to their “special needs” youngster when they die.

The AS or HFA youngster may miss out on valuable social, educational, leisure and life experiences that others his age take for granted. As a result, the child’s confidence and self-esteem deteriorates, which may lead to depression and other mental health problems. Teens on the autism spectrum are especially vulnerable, often being bullied by their classmates or excluded from their peer group. For older teens, the transition into adulthood is just as bleak, because many do not have the social and communication skills needed to live independently or get a job. Many times, these teens simply stay at home or walk the streets through most of their adult lives, and a few tragically break the law and commit crimes often related to their lack of social understanding.

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

On a Positive Note—

Here’s the good news: Children on the autism spectrum have many more strengths than weaknesses. Parenting these children has many positives that outweigh the negatives. So, if you're troubled from hearing about all the "deficits" challenging children with AS and HFA – join the club! But for every downside, there is an upside. These positives are worth celebrating. Here a just a few examples:

They Are Less Materialistic— Of course, this is not universally true, but in general, children with AS and HFA are far less concerned with outward appearance than their “typical” peers. As a result, they worry less about brand names, hairstyles and other expensive, but unimportant, externals than most children and teens do.

They Are Not Tied to Social Expectations— If you've ever bought a car, played a game or joined a club to fit in, you know how hard it is to be true to yourself. But for children with AS and HFA, social expectations can be honestly irrelevant. What really matters to them is true liking, interest and passion -- not keeping up with the current trends and fads.

They are Passionate— Of course, not all AS and HFA children are alike. But many are truly passionate about the things, ideas and special interests in their lives. How many "typical" children can say the same?

They Have Terrific Memories— How often do typical children forget directions, or fail to take note of colors, names, and other details? Children with AS and HFA are often much more tuned in to details. They may have a much better memory than their typical peers for all kind of critical details.

They Live in the Moment— How often do typical children fail to notice what's in front of their eyes because they're distracted by social cues or random chitchat? Children with AS and HFA truly attend to the sensory input that surrounds them. Many have achieved the ideal of mindfulness.

They Play Fewer Head Games— Most AS and HFA children don't play games -- and they assume that you won't either. It's a refreshing and wonderful change from the typical B.S. that tarnishes too many typical relationships!

They Rarely Judge Others— Who's in better shape? Richer? Smarter? For children with AS and HFA, these distinctions hold much less importance than for typical kids. In fact, they often see through such surface appearances to discover the real person.

They Rarely Lie— We all claim to value the truth, but almost all of us tell little white lies …all, that is, except children with AS and HFA. To them, truth is truth -- and a good word from a child on the spectrum is usually the real deal.

As one 12-year-old boy on the spectrum stated, “I'm glad that some people recognize the strengths of Asperger's syndrome. People shouldn't look at us as just weird. They should know our positive traits too.”


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

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

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

Join our sister Facebook Community page, which is a support group and educational resource for parents raising children on the "high-functioning" end of the autism spectrum.


==> Click here to join!
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ASD and Narcissism: The Overlap

ASD is often confused with Narcissistic Personality Disorder (NPD). The reason for this confusion is understandable since some of the symptoms found in people with ASD are also found in those with Narcissistic Personality Disorder.



Resources for parents of children and teens on the autism spectrum:
 


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Children on the Autism Spectrum and Problems with Impulsivity

Autism Spectrum Disorders are often characterized by a lack of impulse control. Kids with Asperger’s (AS) and High-Functioning Autism (HFA) are sometimes labeled unmanageable or aggressive because of their impulsivity, which involves “a tendency to act on a whim, displaying behavior characterized by little or no forethought, reflection, or consideration of the consequences.”

Even though HFA kids can be caring and sensitive, their good qualities are often overshadowed by their lack of impulse control; their ability to "self-regulate" is compromised.

Impulse control can be a difficult skill to teach to any youngster, and is even more difficult with kids who have a neurological disorder. Many parents of these “special needs” children have reported that their youngster seems to spend his life in time-out, grounded, or in trouble for what he says and does – both at home and school – due to “acting before thinking.” Teaching self-regulation can be frustrating for parents and teachers, but is vital to the continued success of kids on the spectrum.



Here are a few strategies for parents and teachers that can be helpful when teaching self-regulation to kids with AS and HFA:

1. Be very specific in your instructions. Kids with HFA have difficulty telling right from wrong, so teachers and parents must be concrete, stating clear, consistent expectations and consequences. Telling the youngster to "be nice" is too vague. Instead, say something such as "Wait in line for the slide, and don't push" or "When we go into the store, just look – don’t touch.”

2. Consequences need to be instantaneous – and short. Delayed consequences (e.g., time-out or detention) don't work for those with difficulty anticipating future outcomes (an autistic trait). Consequences should be immediate (e.g., if the HFA student hits another student, recess is suspended – but for only 10 minutes).

3. Consider employing a "point system" in which the child earns tokens or pennies for a positive target behavior. He or she can then redeem the points at the end of the week for a special “prize” (e.g., pizza dinner, extra TV time, another small goldfish for the aquarium, etc.).

==> Teaching Social Skills and Emotion Management

4. Ignore minor problems. For example, if your youngster spills some juice because she's pouring it carelessly or too quickly, talk to her about the importance of moving more precisely and slowly, help her clean up the spill, and move on. Some slip-ups simply don’t warrant consequences. Pick your battles carefully.

5. Another method that can be used to teach children with HFA how to self-regulate is “redirection” from the problem-causing stimulus. Over-stimulation of the senses is a common cause of impulsive behaviors in these kids. So, look for cues that often precede the impulsive behavior so that you are aware of when they are more likely to occur, and find opportunities to redirect the child’s attention before the problematic behavior ensues. Music and art are two examples of activities that kids on the spectrum tend to enjoy, since they appeal to visual and audio stimuli.

6. Make sure that the punishment fits the crime. For example, dinnertime tantrums can result in dismissal from the table without dessert, rather than loss of computer game privileges (in this case, computer games have nothing to do with tantrums at the table).

7. No child is above the law! While HFA is an explanation for some behavioral problems, it is never an excuse (e.g., the disorder may explain why Michael pushed Sarah, but the disorder did not “make” Michael do it). Kids on the autism spectrum need to understand the responsibility to control themselves.

8. Acknowledgement and praise should be provided immediately (and as often as possible) when the child behaves appropriately. Catch him in the act of doing something good. Accuse him of being successful. And, specifically state what he is doing well (e.g., waiting his turn).

==> Teaching Social Skills and Emotion Management

9. Post the day's schedule on a dry erase board, and erase items as they are completed. This gives HFA children a sense of control about their day. For example: At home, parents can post chores that need to be completed on that particular day, such as “take trash can to the street for pick-up” or “run the vacuum in your bedroom.” At school, teachers can post items such as “organize your desk (with specific directions on how to do that)” or “sharpen pencils.” Also, be sure to alert the child in advance about any revisions to his or her daily routine.

10. Posting house rules and classroom rules lets HFA kids know what's expected of them, and also serves as a visual reminder for those who act before they think. At home, the rules can be posted on the refrigerator door. At school, they can be posted on the blackboard. Any location where they can be viewed throughout the day will suffice. Some kids benefit from seeing rules written on an index card, such as “Wash hands before eating,” taped directly on the dining room table, or "Raise hands before speaking," taped directly on their desks at school.

11. Prepare for impulsive reactions ahead of time. In situations where a lack of structure or some other situation sets off an impulsive reaction in the HFA child, have a plan ready to help him or her to keep impulses in check. For example: At home, maybe the child can help with dinner preparations as a distraction. At school, perhaps the child can be given a special task (e.g., "monitor" or "coach") to help him or her stay focused on self-control.

12. Prepare the HFA child for ALL transitions. To avoid meltdowns and tantrums when moving between tasks (another stressor for kids on the spectrum), give the child a 10-minute warning, then a 5-minute warning, and then a 1-minute warning of a transition so that he or she will have adequate time to stop one activity and start another. This would include everything from preparing for bedtime at home to preparing for lunch time at school.




Teaching self-regulation to HFA children is a challenge, and there is no single solution that works for everyone. As with most teaching, the more intervention you provide, the greater chance of seeing success. Like working to improve other skills, it is helpful to begin teaching impulse control as early as possible. Above all, avoid getting aggravated and know that it will take time and patience. In the meantime, you can be proud that you are helping your youngster reach his or her full potential.

 

More articles for parents of children and teens on the autism spectrum:
 
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…

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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...

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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…

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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…

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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...

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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...
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Helping Your “Neurotypical” Children Cope with a Sibling on the Autism Spectrum

Parenting a youngster with Asperger’s (AS) or High-Functioning Autism (HFA) places some unexpected burdens on moms and dads – as well as siblings. The time involved in meeting the needs of a family member on the autism spectrum may leave the parent with little time for the other kids. As a result, there may be consistent tension in the household.

Many siblings of an AS or HFA child experience the following stressors:
  • Angry that no one pays attention to them (in their opinion)
  • Being the target of aggressive behaviors from the autistic child
  • Concern over their role in care-taking
  • Concern regarding their parents’ anxiety
  • Embarrassment around peers
  • Frustration over not being able to engage or get a response from their AS or HFA sibling
  • Guilty for negative feelings they have toward their brother/sister
  • Guilty for not having the same problems as their sibling
  • Jealousy regarding the amount of time and attention their mom and dad spend with their sibling
  • Not knowing how to handle situations in which their sibling is teased or bullied by others
  • Pressure to be or do what their brother/sister can’t
  • Resentful of having to explain, support, or take care of their sibling
  • Resentful that they are unable to do things or go places because of their brother/sister
  • Trying to make up for the deficits of their sibling
  • Worried about their brother/sister



Due to the nature of AS and HFA, it is difficult for brothers and sisters to form a satisfying relationship with the sibling who has the disorder. For instance, the siblings’ attempts to play with their autistic brother may (a) be rejected by his ignoring them, (b) fail because of his lack of play skills, or (c) end suddenly because his meltdowns are scary. What child would keep trying to form a friendship with someone who seemed upset to one degree or another every time he was approached? It’s not surprising that siblings become discouraged by the reactions they encounter from their autistic sibling.

There are special demands placed on the siblings of an AS or HFA child. Thus, it is crucial that they learn to manage these demands. It’s also crucial that parents (a) educate their “neurotypical” (i.e., non-autistic) children about autism spectrum disorders, (b) work at improving interactions among all the kids in the family, and (c) ensure brothers and sisters grow up feeling they have benefited from the love, time and attention they all need.

Fortunately, your non-autistic kids can be taught simple skills that will help them to engage their AS or HFA sibling in playful interactions. These skills include things such as praising good play, making sure they have their autistic sibling’s attention, and giving simple instructions.

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

Below are some suggestions regarding ways parents can help their “neurotypical” kids in the family cope gracefully and effectively with the experience of having a sibling on the autism spectrum:

1. Even though it is important for your AS or HFA youngster to feel like a fully integrated member of the family, it is equally as important that your other kids have “special time” too. Thus, as much as possible, try to find some regular, separate time for the other kids. It could be as simple as one evening a week, a Sunday morning, or even a 10 minutes at bedtime each night.

Making sure that each and every child has the exact amount of “parent-time” is not necessary – or even important. What is important, though, is the opportunity for each child to feel special and to feel an overall atmosphere of equity in the home. If the “special needs” youngster experiences serious behavior-management problems, most parents will have neither the endurance nor the time to give all the kids exactly the same amount of attention. This is understandable and something that simply comes with the territory.

2. If the AS or HFA child is particularly aggressive or disruptive, the emotions of the “neurotypical” children may become so severe or upsetting that they will need professional counseling to help them cope. Also, meeting and talking with other kids going through the same thing can be very helpful (even if it's just online).

3. Research supports the idea that siblings of an AS or HFA child need to understand what autism is all about. Parents need to educate their “neurotypical” children about the disorder early – and do it often! From early childhood, these siblings need explanations that help them understand the behaviors that are of concern to them. And, the information provided needs to be adjusted to the siblings’ age and understanding.

For instance, very young kids may be concerned about the odd behaviors of the AS or HFA child that scare them (e.g., meltdowns, aggression, etc.). An older youngster may have concerns about how to explain autism to his or her peers. For teenagers, these concerns may shift to the long-range needs of their “special needs” sibling and the role they will play in future care. Every age has its needs, and the parent’s task is to listen carefully to the immediate concerns of the non-autistic children.




4. Some degree of sibling rivalry is to be expected in all families, whether or not autism is factored in to the equation. But, sometimes the rivalry crosses the line into abuse (e.g., one of the children acts out abuse in play, acts out sexually in inappropriate ways, has changes in behavior/sleep patterns/eating habits, has nightmares, always avoids his or her sibling, one child is always the aggressor while the other is always the victim, or the conflict between siblings is increasing over time). If there is a chance the sibling relationship has become abusive, parents should seek professional help.

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

5. Try to have a mixture of family activities where all members participate, and individual activities where one child is the focus of your attention. In addition to one-on-one time, it’s also good to have some events when one youngster in the family has the focus of everyone’s attention (e.g., birthdays, graduations, etc.).

Siblings may become frustrated and angry if they have to do everything with their AS or HFA sister/brother. In fact, there may be times when it may not be fair to insist that they be included. For instance, if the AS or HFA child can’t sit still for a school play, then it may be better if she or he stays home while your “neurotypical” youngster performs.

6.    Consider purchasing some books on the topic. Here are a few:
  • Brothers and Sisters: A Special Part of Exceptional Families, by Thomas Powell and Peggy Gallagher.
  • Offspring and Parents, by Diane Marsh, Rex Dickens and E. Fuller Torrey. 
  • It Isn't Fair! Edited by Stanley D. Klein and Maxwell J. Schleifer
  • Living with a Brother or Sister with Special Needs: A Book for Siblings, by Donald Meyer and Patricia Vadasy.
  • Siblings Without Rivalry, by Adele Faber and Elaine Mazlish.

7.    Talk to your physician if you see any of these warning signs in your “neurotypical” children as they try to cope with a sibling on the autism spectrum:
  • withdrawal (e.g., hibernating in their bedroom)
  • talk of hurting themselves
  • poor self-esteem
  • poor concentration
  • physical symptoms (e.g., headaches or stomachaches)
  • perfectionism
  • loss of interest in activities
  • hopelessness
  • frequent crying or worrying
  • difficulty separating from parents
  • changes in eating or sleeping (e.g., too much or too little)

Research indicates that the majority of “neurotypical” kids cope well with their experience of having an AS or HFA sibling. However, that doesn’t mean that they do not encounter particular difficulties in learning how to deal with him or her. While having a sibling on the spectrum is a challenge to the siblings, it is certainly not an insurmountable obstacle. Most “neurotypical” kids handle the challenge effectively, and many of them respond with humor, grace, and love far beyond their years.

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

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

 ==> 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
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2024 Statistics of Autism in Chinese Children

Autism Spectrum Disorder (ASD) has emerged as a significant public health concern worldwide, and China is no exception. As of 2024, new rese...