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"How do we tell others about our daughter's recent diagnosis of autism (high functioning)? Who needs to know - and who doesn't?"
Finding out that one’s child has been diagnosed with ASD level 1, or High-Functioning Autism, can be scary. Some moms and dads naturally feel guilty, even though there isn’t anything yet known that could have prevented the disorder. Through all of this comes the need for telling others about the disorder and how it affects the child.
If you are faced with having to tell those around you that your child has ASD, the first thing you want to do is understand and read about the disorder so that you can answer questions appropriately and truly be an advocate for your child.
You will also want to start with those closest to you, beginning with the siblings of the affected youngster. Telling younger children that their sibling has a brain condition that causes him/her to have problems talking with others, causes him/her to focus inordinately on certain subjects to the exclusion of others, and results in him/her performing ritual behaviors may be enough.
These kids have seen everything already and just need to know that there is a reason behind the behaviors. It can help siblings be less frustrated with their "special needs" sibling - and they can also become advocates for the child. Having a name for what the siblings are seeing can help a great deal.
After the family becomes accustomed to the diagnosis, it’s time to speak with the extended family. Encourage them to read what they can on the subject, and help them connect the symptoms they see with a brain disorder that can’t be helped. If they know that much of the behavior is beyond the control of the child, family members can come to love the child at the level he or she is at.
Certainly, teachers need to understand the diagnosis and how it is affecting your child. Plans need to be made to alter the educational style the teacher(s) use to help teach the child in an effective manner. A frank discussion of the diagnosis should be followed with problem-solving methods that will help the child thrive as best he or she can in the educational world.
Beyond family, educators, and perhaps daycare workers, parents of an autistic child don’t necessarily need to tell the rest of the world, especially if others don’t see much of a problem in the child’s behavior. What you do eventually say can be as simple as “my child has a brain disorder” or as complex as explaining the disorder to its fullest to interested friends or acquaintances.
Certainly, the conversation needs to take place every year as new teachers come into the picture but, in today’s times, autism spectrum disorders are more well known and more easily understandable than they once were.
As one parent stated: "I find it helps to say . . .'but don't worry, its not catching'."
Resources for parents of children and teens on the autism spectrum:
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.
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.
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.
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…
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...
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.
A child with High-Functioning Autism (HFA) can have
difficulty in school because, since he fits in so well, many adults
may miss the fact that he has a diagnosis. When these children display
symptoms of their disorder, they may be seen as defiant or disruptive.
I am the dubiously proud mother of a 7-year-old girl with HFA. As with many autistics, she likes a certain sense of order in her surroundings, and will rearrange other people's belongings to accommodate her own preferences. We have spoken to her time and time again about not touching other people's things... all to no avail. Now her teacher reports she is taking things from others. This has been happening in our home rather regularly, and we have tried everything we can think of to stop or prevent the behavior, but it seems to be getting worse not better. Any help you can give me would be MUCH appreciated!
Answer
I don’t see this as an high-functioning autistic trait per say. The desire for forbidden objects overwhelms many kids, making the temptation to take them too much to resist. Your daughter probably just can't control her “desire” to have other’s belongings – but it is possible for her to control her “behavior.”
Often times, kids take things because they lack impulse control and haven't developed a strong sense of right and wrong just yet. But you should also ask yourself if there is another reason your daughter is taking things that don't belong to her (e.g., lack of attention at home, not enough friends in school, etc.).
Whatever the reason for your daughter’s behavior, it does infringe on the rights of the other kids.
As one mother stated, "My son is 13 and is still grabbing and touching other people's
belongings. His hands are as busy as a toddler's only now the things
that interest him are not grandma's shiny breakables, but someone else's
cell phone or ipod. He will pick them up and start pushing buttons,
etc. His world is "all about me" and he doesn't notice how appalled or
annoyed people are with him. In a few years, I'm afraid someone will
really take him to task over this. The cute factor is long gone. He also
has stolen other people's belongings, if they are related to his
special interest. His reasoning? 'I wanted it!' "
Your first goal should be to stop this undesirable behavior and help your daughter to respect the belongings of others. Here are a few ideas:
1. Acknowledge her desires. It's important to validate your daughter’s feelings while also maintaining leadership and stopping the behavior. You might say, "I know you want that toy, but it's Michelle’s. You need to ask her if you can play with it." Or you might say, "You really want that doll, don't you? But it belongs here in school so the other kids can use it."
2. Anticipate and remove temptations. Make a box where kids can keep the toys they bring in, and place it out of reach.
3. Give two choices; this helps children learn decision-making skills.
4. Realize you must teach your child boundaries; children are not born with them.
5. Recognize and respect the child’s boundaries. For example, knock on their closed bedroom door instead of just walking in.
6. Review the rules. Make sure that your daughter knows that "don't take things that do not belong to you" is a school rule. Have her return the object or classroom material, but do not force her to apologize.
7. Set your own boundaries as the parent, and have consequences for crossing them.
8. Share your opinions with your child. Allow your child her opinions. Opinions are not right or wrong. This will help her think for herself.
9. Teach impulses control. Help your daughter learn to stop and think before she takes other’s stuff. Explain to her that she needs to ask herself, "Who does this belong to, and can I play with it?" Point out to her that if the item in question belongs to another youngster, she should ask the owner whether she can use it and accept the response. If she uses the object, she needs to return it when she's done.
10. When you recognize that boundaries need to be set, do it clearly, do it without anger, and use as few words as possible.
Resources for parents of children and teens on the autism spectrum:
"What can be done about an autistic child (high functioning) who does things repeatedly like rocking back and forth, spinning and flipping objects, making strange vocal noises over and over again? This constant non-stop behavior can be so annoying (and embarrassing) at times."
Most of our "leisure activities" are nothing more than self-stimulation behaviors that have become highly ritualized over time and made socially acceptable. There is nothing intrinsically valuable or reasonable about leisure pursuits such as bungee jumping, playing cards, dancing, playing video games, listening to music, smoking, etc.
People participate in these different activities because they find them to be pleasurable and because the activities alter their physical state. Each activity provides us with a particular type of sensory input.
There is not necessarily a great difference in so-called self-stimulation behaviors in children with autism spectrum disorders and some of these activities, beyond the fact that some are more socially acceptable and "normal" in appearance than others.
Most parents find that their child with ASD or High-Functioning Autism is more likely to participate in self-stimulatory behaviors when he or she is idle or stressed. Interacting with your child in some way may break up the self-stimulation. If the behavior appears in response to stress, finding ways to help him relax (e.g., massage, being wrapped up in a quilt, etc.) may reduce the amount of time spent in the behavior you find inappropriate or harmful. If your child is left alone; however, it is likely he/she will re-engage in this activity as soon as the opportunity presents itself.
Some behaviors may present problems because they are considered socially inappropriate. These behaviors can be used as a way to explore the child's preferred sensory channels for receiving information from the world. With this information, parents may identify preferred sensory experiences around which they can develop more "mainstream" leisure activities that their children will also come to view as "leisure" (e.g., if the youngster enjoys the visual sensation of lights, find age-appropriate toys that can be motivating to him).
Take time to observe the types of self-stimulation that your child participates in - and when this behavior occurs. Watch him or her and make notes about what you see and when you see it. Then try to see if there is any pattern to these behaviors that would give you insight to the type or types of stimulation he/she prefers and the purpose it serves.
At the same time, note what types of activities your youngster finds aversive. When you have a good understanding about his or her preferences, begin to brainstorm ways that you can offer other stimulatory activities, modify or expand on the preferred self-stimulation.
Look at children of the same age, and try to find toys or activities that may make the self-stimulatory behavior appear more "normal." Sometimes your child's favorite self-stimulation activity can be modified or expanded in a way that will make it more socially acceptable.
As one mother with Asperger's herself states, "I totally agree, it can be annoying, even embarrassing at times, but they cant help themselves. Its part of the acceptance we as parents have to do. Ive even had to go to counseling myself. My child's father was so ashamed that he left. If u really love ur child, u have to just deal with it minute by minute & second by second. I personally am blessed to have 2 adult children that are always willing to watch my son for a few hours to give me a break. Ill be praying for all the other aspergers parents out there cuz we understand all too well what that missing puzzle piece means."
Resources for parents of children and teens on the autism spectrum:
"Can high functioning autism be inherited? Our son was recently diagnosed, and now I am wondering if my husband has it too ...their behaviors are very similar."
There is strong evidence that ASD Level 1 or High-Functioning Autism (HFA) is, at least in part, an inherited condition. If one twin develops the disorder, there is a 60% likelihood that the other will develop it as well.
Younger kids born into families with an older child on the autism spectrum have a 5-6% likelihood of also having the disorder.
Even though the incidence of HFA is higher among related family members, no specific gene has been linked to its development. Also, there is currently no way to test for the genetic predisposition towards the disorder.
HFA is a neurobiological disorder in which known areas of the brain are affected in ways scientists do not yet completely understand. The disorder is considered to be inherited in a complex fashion (e.g., more complicated than disorders such as color-blindness or Huntington’s disease).
Researchers are getting closer to finding a genetic basis behind autism spectrum disorders. Rett’s syndrome is an autistic disorder for which the exact genetic cause is believed to have been found. In Aspergers and HFA, studies suggest problems in several chromosomal (genetic) regions, including areas on the chromosomes 2q, 7q and 15q.
While the 7q region is considered the most promising area of study, research studies involving this chromosome in the disorder have failed to observe its linkage to this region.
For reasons doctors do not completely understand, there are far more boys "diagnosed" than girls (although there may be as many girls with the disorder as boys, males get diagnosed with the disorder more often).
Scientists have evaluated whether or not HFA represents an X-linked genetic disorder (i.e., one passed down generally from a mother to a son). Unfortunately, there have been cases of father to son transmission of the condition, which means that the disease can't be X-linked.
In at least one case, two parents with HFA had a child that also had the disorder, but did not have a severe case of the disorder, nor did the child have autism. In another case, identical twins both had HFA, but this is not always the case.
While some scientists support the idea that at least a portion of the disorder isn’t genetic at all, there have been no specific findings associating it with any environmental conditions (e.g., pregnancy complications).
Resources for parents of children and teens on the autism spectrum:
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.
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.
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.
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…
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...
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.
A child with High-Functioning Autism (HFA) can have
difficulty in school because, since he fits in so well, many adults
may miss the fact that he has a diagnosis. When these children display
symptoms of their disorder, they may be seen as defiant or disruptive.
