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High-Functioning Autism and Sibling Issues

"Any tips for helping my 'typical' kids to understand their older brother (high functioning autistic)?"

Almost more than spouses, brothers and sisters are thrown together for better or for worse. When a sibling has an autism spectrum disorder, it can complicate that relationship because one youngster lacks social skills and another just can’t figure out “why my brother acts that way.”

Tips for Parents—

1. Don’t accept bad behavior from your HFA youngster, and don’t expect perfection from your other kids. That can lead to resentment and acting-out.

2. Fully educate yourself about your HFA youngster, and then inform his siblings on an age-appropriate basis. Know that kids on the autism spectrum find it very difficult to pick up on social cues and often have intense, narrow interests. Even a young sibling can understand that, “Jacob gets upset when we stop talking about trains, but we’re working on ways to make that better.”

3. Realize just as you may mourn the loss of a more mainstream youngster, his siblings may also be sad they don’t have the kind of sibling relationship that other siblings enjoy. Let them talk about those feelings.

4. Seek support groups. Mom and dads in those organizations likely have other kids, too, and they can be a valuable resource for the siblings of your HFA youngster.

5. Set aside quality time alone with each youngster. This may sound difficult, but one way to accomplish that is to take one youngster at a time on an errand or personal appointment when you can. You’ll have valuable “car time” with the youngster in tow.

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

6. Understand that HFA is an “invisible” disorder. Siblings may be embarrassed in front of their friends or at the mall when their brother (who looks no different than any other kid) can’t stop his weird mannerisms (e.g., clenching and un-clenching his fists).

Warnings—
  • All siblings fight.
  • Never compare your HFA child to his siblings. It will create feelings of unworthiness about himself and anger toward the siblings.
  • Your "special needs" youngster will learn crucial social skills in interactions with siblings. Seize upon teaching moments.

Letter from a parent regarding siblings of HFA children:

It has been two years since my oldest son was diagnosed with high functioning autism, and while we have all come a long way since that day, it has become obvious to us that our younger son (there is only a year between the two) has had to go down a much longer road to get to the point where he can understand his brother.

When we first discussed the difficulties our older child faced, our younger son didn't want to hear them. He didn't want to know that there was something different about his brother. He cried for many nights after, grieving the loss of his idea of what an older brother should be like. He became so depressed and upset over the diagnosis that I took him to see the psychiatrist who had diagnosed my older son. She reassured him that all his feelings were normal, it was okay to feel stressed by this development and suggested ways in which he could deal with his feelings.

After the grieving stage came the anger. This was a very difficult stage for us to deal with. He wouldn't even look at his brother except to glare at him from time to time. He wouldn't speak to his brother unless he had to, and when he did, he spoke in a really rude tone of voice. There were many times when we had to step in and "have a talk" with him about his attitude. Finally, when we pointed out that his behavior wasn't helping the situation at home and that we needed him to be more accepting of his brother, he settled down.

His first steps into trying to understand autism came in the form of questions. He would ask why his brother behaved a certain way, or did a certain thing and we would answer as best as we could. Then he started to make statements like "My brother does that because he hates change". As situations arose, we explained them to our son and he developed an understanding of the disorder. When the kids at school asked him why his older brother was a "freak", he wouldn't say a word. At the end of the day he would tell us these stories and we would make suggestions about how to deal with these situations. While this issue of the other kids calling his brother names still makes him very uncomfortable, he no longer responds by taking out his anger on the family.

Over the past year we have made a point of teaching our younger son about the communication difficulties his brother has. With the literal interpretation of words being the cause of many disagreements between them, my younger son can often stop an escalating fight by using humor or word play to diffuse the situation. Two years ago this would have been impossible.

Don't misunderstand me, it has not been easy to explain the intricacies of autism to a 10 year old sibling but I am glad now that we did. The boys get along much better than they have for several years and the younger one is providing much needed support and understanding for the older one.
==> Click here for more information on sibling issues and the autistic child...


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

==> Videos for Parents of Children and Teens with ASD
 
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COMMENTS:

•    Anonymous said... My 12 year old son has a very hard time dealing with and understanding his 9 year old sister who has autism. He too feels embarrassed by her. He avoids being around her if he can. This article was helpful. It is hard for me because she could learn so much from him, but he is not willing to give her the time.
•    Anonymous said... Holly Robinson Peete has two children, one on the spectrum. Her other child wrote a book about it. I have not personally read it, but have heard good things about it from others who have.
•    Anonymous said... Really great article with very interesting information. You might want to follow up to this topic!?! 2011
•    Anonymous said… Thank you for this post. I have an almost 13 yr old aspie and an almost 11 year old son with bipolar. I never know how much to tell one boy about the other thank you for this post. I have an almost 13 yr old aspie and an almost 11 year old son with bipolar. I never know how much to tell one boy about the other.
 
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Asperger's Syndrome: Different Pathways to Diagnosis

There are several different pathways to the diagnosis of Aspergers. Some kids receive the diagnosis fairly early in life, while some individuals are not diagnosed until well into adulthood. In some cases, kids are inaccurately diagnosed with another disorder, (e.g., a language disorder, depression, schizoid personality), and are only later correctly diagnosed with Aspergers. Some kids are considered autistic early in life, but progress well enough to ultimately be diagnosed with Aspergers.

The impact of the diagnosis of Aspergers on a family is no doubt partly related to the manner in which the individual was diagnosed. Families who recognize early on that there is something seriously wrong with their youngster and are given a diagnosis of autism spectrum disorder (and only later learn their youngster has Aspergers) will experience many of the reactions families with autistic kids have. These reactions are described below. Many families, whose kids progress far enough to no longer warrant an autism diagnosis, experience considerable relief and pride in their and their kid’s accomplishments. At the same time, they still struggle with complex feelings related to their youngster's Aspergers diagnosis. If the diagnosis is made in a parent or other relative when a youngster in the family receives the diagnosis, a different constellation of feelings is often set into motion. In these families, the adult must grapple not only with the diagnosis of a disability in the youngster, but with coming to terms with his own disability as well.

Because many kids with Aspergers were originally felt to have an autism diagnosis, the following remarks address the social and emotional issues for the families of kids diagnosed with an autism spectrum disorder (ASD). These remarks generally refer to adult family members, primarily moms & dads and sometimes grandmoms & dads:

It is hard to overestimate the impact the diagnosis of ASD has on a family. For many moms & dads, this pain is so searing that even years later, the memory automatically causes tears. All moms & dads wish for healthy kids and this diagnosis shatters that hope irrevocably; never mind the fantasy of "perfect" kids, it shatters the premise that one has a normal youngster.

There is generally a kind of anxiety surrounding the birth of a baby that the youngster be healthy and many of these kids early on seemed to be fine. To learn that one does not have the normal little girl or boy one thought one had is an especially painful blow.

Compounding the impact of the diagnosis of ASD is the fact that it, unlike some other handicaps, affects multiple and diverse aspects of functioning. There may be impairments of cognition, motor skills, language, behavior, and certainly social and emotional interaction. ASD affects the way in which kids respond to and relate to their moms & dads. This is most dramatic in those autistic kids who act as if people do not exist. There is nothing more chilling than the gaze of a youngster who appears not to see. Such difficulties tend to make moms & dads feel helpless and as if they don’t matter. Most families become preoccupied with ASD and see it as the central feature of their lives. According to one father, "There isn't an hour that goes by that I don't think about it." Another parent said, "Will I ever be happy again?"


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Asperger's Syndrome: Social and Emotional Difficulties

Hyperactivity—

There has recently been considerable interest and research into the possible connection between autism spectrum disorders and Attention Deficit Hyperactivity Disorder (ADHD). This interest includes both the similarities in symptoms as well as genetics. Hyperactivity, inattentiveness and impulsivity can be present in a number of childhood onset disorders, including ADHD as well as autism spectrum disorders. Kids with Attention Deficit Disorder (ADD) are often considered as having some characteristics indicative of Aspergers. Although they are two distinct disorders, they are not mutually exclusive and a youngster could have both conditions.

One nine year old boy with Aspergers, Jake, displayed severe symptoms of hyperactivity. He could barely contain himself when in his therapist's office, preferring to remove all the books from her bookshelf and trying to race down the hallways.

Another possibility is that of misdiagnosis. Some kids originally diagnosed with ADHD have later been re-diagnosed with a diagnosis on the autistic spectrum.

Perhaps the central feature of Aspergers is the unusual profile of social and emotional behavior... with ADHD, the kids tend to know how to play and want to play, but do so badly... kids with ADD have a diverse range of linguistic skills and interests, while there is a distinct language and interests profile for those with Aspergers. Their interests tend to be idiosyncratic and solitary, in contrast to those kids with ADD whose interests are more likely to be conventional for kids of that age. Kids with both conditions prefer and respond well to routines and predictability, can experience sensory sensitivity and have problems with motor coordination... Both conditions can be associated with impulsivity but this feature tends to be less of an issue with Aspergers... The youngster with ADD has a propensity to have problems with organization skills... With Aspergers, the profile includes unusual aspects of organizational skills such as unconventional means of solving problems and inflexibility.

Obsessive-Compulsive Traits—

Inflexibility regarding routines and rituals is a very common characteristic of people with autism and Aspergers. In Leo Kanner's writings about autism in 1943, he referred to the youngster with autism as having an "obsessive insistence on sameness".

While many people with autism spectrum disorder display inflexibility and rigidity, sometimes the symptoms are extreme and may warrant an additional diagnosis of Obsessive-compulsive disorder (OCD). It is conceivable that some higher-functioning autistic people's quasi-obsessive behaviors reflect true symptoms of a co-existing OCD. There was a woman with Aspergers who needed to check her doors and stove many times a day. Also, there was a man with Aspergers who needed to wash his hands very frequently because he feared contamination by germs. In these two examples, the extreme nature of the symptomatology and the fact that the people involved were troubled by their rituals support the diagnosis of OCD.

A commonly asked question is how to make a distinction between obsessive-compulsive symptoms and the unusual preoccupations of many people with Aspergers. In general, people with OCD realize their behavior is odd and are upset by their inability to control their symptoms. The special interests of people with Aspergers are different from a compulsive disorder in that the individual really enjoys their interest and does not try to resist it. As Janice, an adult with Aspergers said, "It's fun!"

There is considerable controversy in the field about whether people with autism or Aspergers who have milder ADHD or OCD symptoms should be diagnosed with multiple disorders. In other words, does the individual have Aspergers with hyperactive traits or is it preferable to diagnose him with Aspergers as well as ADHD? Does he have Aspergers with obsessive-compulsive characteristics or Aspergers plus OCD? Some clinicians feel that autism spectrum disorder, including Aspergers, is a broad category encompassing a wide variety of symptoms, with some people displaying more of some symptoms than others. On the other hand, other clinicians worry that many symptoms which respond well to psychopharmacological treatment may go untreated if not specifically diagnosed.

Anxiety—

Anxiety appears to be extremely common among people with autism and Aspergers. As one might expect, there are certain situations that typically lead to anxiety in this population. These situations include such things as changes in routine, interference with rituals, things not happening in the expected way, failing at tasks, and sensory overload.

Interestingly, for some people on the spectrum, it is the "little" things which seem to cause the most distress, while more major changes may be experienced with less disruption. Brandon, the boy who became overwhelmed with a change in television programming, looked forward with eager anticipation as his family prepared to move to a new house and, in fact, did quite well before, during and after the move.

If anxiety builds up to a critical level in any child, a temper tantrum may be the end result. Unfortunately, for a youngster on the spectrum, a temper tantrum may be an overwhelming and prolonged event. Furthermore, the techniques often used with typically developing kids may not work and may even prolong the difficulty. Trying to talk the youngster through the experience or reasoning with him is usually not effective. In addition, after the temper tantrum has subsided, trying to process with the youngster what happened and why may even contribute to the return of anxiety as well as the temper tantrum. Brenda Smith-Myles has referred to this phenomenon as "recycling".

Clearly, it is preferable to be proactive in preventing temper tantrums whenever possible, rather than trying to stop them once they have begun. In a proactive approach, thought is given beforehand to the kinds of things likely to provoke a temper tantrum in any particular child and either trying to avoid them or preparing for them. For example, for an individual greatly upset by change, one approach is to try to keep things as consistent and predictable as possible. When changes are unavoidable, if they are known in advance, it is often helpful to prepare the child for this fact. Another approach is to teach the child in a gradual, but systematic way, techniques for dealing with the changes and disruptions in life.

In addition to trying to prevent temper tantrums whenever possible, it is useful to have a plan in place to deal with them should they occur. This approach has more likelihood of success if utilized early in the temper tantrum; circumventing a temper tantrum is usually much easier than trying to stop one in full swing. The plan needs to be tailor made to the child; what works for one individual may be quite different from what works for another. It is often useful for teachers to speak to parents about what approaches are helpful in dealing with their kids. Undoubtedly, they have had many opportunities to try out different techniques! For some kids, removing them from the scene and providing them with "settling" activities may be useful. For example, Fred was often helped by being led to a quiet place where he could look at his calendars and yearbooks. For some kids, touch, especially firm pressure, can be a useful technique. On the other hand, for kids who are sensory defensive, touch can be too overwhelming. The following example illustrates one approach to containing a temper tantrum.

Mike had been eagerly looking forward to going on the Swan Boats in Boston. One day, his parent planned an outing in which they rode the subway into town, an experience Mike loved, and then went on to the boats. Unfortunately, just as they were about to board, the skies opened up in a downpour and the attendant announced the Swan Boats were closing. Mike began a full-fledged temper tantrum, complete with screaming, name-calling and flailing. His parent somehow managed to usher him into the subway station and onto the train, where, naturally, everyone else was also congregating because of the weather! Although the train was extremely crowded, the other passengers gave Mike and his parent a wide berth. She sat him down on a seat and knelt before him, placing her face very close to his and cupping his face in her hands. In a soothing voice, she told him repeatedly to look at her and reassured him that he was okay. His sobbing and flailing soon ceased.

Depression—

Like anxiety, depression is quite common in people with Aspergers. Many people develop problems with low self-esteem and depression during adolescence. It is at this time that many become acutely aware of their differences from their peers. Unfortunately, this is also the time in life when fitting in becomes so critical.

Some people with Aspergers develop affective disorders, which include true clinical depression and bipolar disorder. There is some data to suggest the incidence of these disorders in Aspergers is higher than in the general population. When these disorders do occur, there may be changes in the individual’s predominant mood or in his view of himself and the world. Vegetative symptoms, e.g., changes in sleep, eating, and activity level, may also occur. Of critical importance is the fact that some people with Aspergers and autism display an increase in “autistic” behaviors, for example, stereotyped motor mannerisms, self-injurious behaviors, or aggressiveness, when they become depressed. This fact seems to contribute to the problem of mental illness not being accurately diagnosed in this population, because clinicians sometimes attribute the increased “autistic” symptoms to the autism or Aspergers, rather than to the affective illness. Affective disorders are also more difficult to diagnose in this population because many people with autism spectrum disorders have difficulty communicating their feelings, both in words and in facial expressions. As a general rule of thumb, a significant change from the individual’s baseline level of functioning should raise questions about the possibility of an additional diagnosis.

In "Emotional Disturbance and Mental Retardation: Diagnostic Overshadowing", Steven Reiss, Grant W. Levitan and Joseph Szyszko of the University of Illinois conducted an important study outlining difficulties similar to those described above. They conducted two experiments showing that people with mental retardation were less likely than controls to be diagnosed with emotional disturbances. They coined the term diagnostic overshadowing, meaning that the emotional problems seemed less significant, or were overshadowed in importance, by the presence of mental retardation. Although this study did not include people with autism or Aspergers, it seems highly likely that similar results would occur. The following example illustrates this point.

Tony, an 8 year old with high functioning autism, was a gentle, rather easy-going youngster and was included in a Montessori classroom. During the fall of 3rd grade, he seemed to become more and more depressed, with increasingly frequent episodes of weeping with no apparent precipitant. His condition continued to deteriorate throughout the fall and by Christmas he required psychiatric hospitalization. By this time, he was weeping almost constantly, had become assaultive, and was trying to escape from his family’s home, which was situated near a major highway. In addition, he kept repeating bizarre demands, such as insisting the names of the days of the week be changed to those of the names of the kids in his class. After discharge from the hospital, he went to a residential school, where the psychiatrist viewed his symptoms as indicative of his autism. It was not until sometime later that another psychiatrist correctly concluded that Tony carried the additional diagnosis of bipolar illness.


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Asperger’s Syndrome and Sleeplessness

"We've been getting complaints from our aspergers/high functioning daughter's teacher that she doses off during 'study time'. It's becoming a real problem. She seems wide awake and full of energy at home though. What would you suggest?"

Click here for the answer...

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Aspergers and Attentional Difficulties

There are several different kinds of attention, some of which tend to be impaired in kids with Aspergers. In particular, there are often problems with shifting attention, the ability to shift attention in a flexible way from one subject to another. Aspergers kids may engage in over-focused, repetitive play for lengthy periods of time, under-reacting to distractions in the environment... These observations suggest good sustained attention, but deficient flexibility in shifting attention. There is a distinction between active and passive (distractibility from outside) attention. In autism spectrum disorder, the problem tends to be more one of active attention. Aspergers kids are not interested in directing their attention to outside stimuli... They follow their own ideas, which are mostly far removed from ordinary concerns, and do not like to be distracted from their thoughts.

A related matter is that of relevance, the ability to judge where it is important to focus one's attention. Aspergers kids are unable to calculate what is relevant in the normal way, hence the observation that the focus of their attention seems peculiar. Thus, one could say they often cannot see the forest for the trees.

Unfortunately, it is not uncommon for students with Aspergers to have considerable difficulty with schoolwork and homework, because of their attentional problems. This difficulty often exists despite superior intelligence. In one striking example, John, a fifteen year old with Aspergers, had an I.Q. in the superior range, but was failing almost all of his high school subjects. His difficulties were not due to a lack of effort on his part. Unfortunately, almost every time he sat down to study or write, he became flooded with his own rather unique thoughts.


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