“When should I begin to talk with my grandchild about his grandfather’s (papa’s) sickness that will result in death? How best to approach the subject? Thank you for your assistance.”
The answer to your question would be “the sooner the better.” Kids, even those on the autism spectrum, typically know more than their parents and grandparents think they do.
You can gauge what your grandson knows through the questions he asks. If he asks, for example, "Is grandpa going to die?" …he may not want to hear, "Everyone is going to die someday." Instead, this can be a signal that he knows grandpa’s condition is life-threatening.
I recommend open and direct communication at all times. If you avoid your grandson’s questions, he may ask someone else or hold the questions in, which could result in unnecessary anxiety. Acknowledging rather than disregarding questions can build trust and show him that his concerns are important. This may increase the likelihood he will come to you with future questions.
So, be honest and concrete in discussions about death and dying. Avoid euphemisms. We use euphemisms to avoid uncomfortable subjects, but kids with Asperger's and High-Functioning Autism (who think very literally) may not pick up on these cues.
For example, if you tell your grandson (after his grandfather’s death) that “grandpa is sleeping,” he may expect grandpa to wake up. If you then say that “grandpa can’t wake up,” your grandson may fear going to sleep and not waking up (you get the point).
Though the words are difficult to say, use terms like "die," "dead," and "dying." Also, considering finding books on the subject of “death of a loved one” or create some social stories around grief.
More resources for parents of children and teens on the autism spectrum:
"Is it possible to learn a child's 'triggers' that may cause meltdowns, and is there a way to intervene before the meltdowns happen?"
Kids with Asperger’s (AS) and High Functioning Autism (HFA) tend to “act out” their feelings. This is how they communicate. They show you how they feel with their whole bodies, not just their words. The message of a meltdown is: “I’m frustrated and upset, and I don’t know what lead up to it or what to do about it.” Our role as moms and dads is to read these hidden messages and help our “special needs” kids express their frustration and confusion in more appropriate ways.
If your HFA youngster is prone to the periodic meltdown, know that it is very possible to find a way to understand his or her frustrations, but change the inappropriate expression of them!
Here are some important tips that will help you recognize your child’s “meltdown triggers” so you can prevent the meltdown from happening in the first place:
1. Dealing with anger: Since “meltdown triggers” and “angry feelings” are directly related, having discussions about anger (during those times when your child is calm) can help you establish a foundation to build on when identifying your youngster’s triggers. Ask her some important questions about emotions (e.g., what makes her angry, happy, sad, etc.). The purpose of this is to teach your child how to identify various feelings, to learn what it means to feel angry, happy, sad, disappointed, etc., but not to give her an excuse for acting-out behavior. This also helps your child to communicate her feelings to you clearly so that you are in the best position to help her learn how to cope.
2. Delayed gratification: HFA children tend to be very rigid. When they set their mind to something, they want it now, and if they don't get it, they may have a meltdown. As parents, we understand that “waiting” patiently for a reward or a desired activity can make it that much sweeter, but AS and HFA children don't have the coping skills to understand this concept of delayed gratification. Thus, it will be your job as a parent to teach your son or daughter to wait for the things that he or she wants. Practice this through role playing with your child, or create a social story around “waiting for something special.”
3. Identifying physical symptoms: Often there are physical symptoms that go along with impending meltdowns. The child’s nervous system kicks into high gear when a trigger is present and can cause several identifiable sensations (e.g., rapid heartbeat, flushed cheeks, rapid breathing, cold hands, muscle tension, etc.). Ask your youngster what she feels in her body when the trigger you are talking about is present. When your child is aware of the warning signs her body gives her, it can serve as a natural cue to put the new plan you came up with during your problem-solving discussions into action.
4. Teaching independence: In your child's mind, the entire world revolves around her. What she wants, she gets, and her mom and dad should always be at her beck and call. Of course, the world doesn't work that way, and a major meltdown trigger is watching someone else get the attention. This might occur if you have another youngster or a pet, or if you are visiting with friends. Teaching your AS or HFA child to be independent is an important part of parenting. At home, give her the opportunity to entertain herself quietly by playing with dolls, for example. This will often translate into entertaining herself when you're focusing on something else, which can help avoid meltdowns.
5. Internal frustration: Some HFA children tend to be perfectionistic and obsessive. The inability to do something right after several attempts, or the lack of language skills to get her point across can get the “meltdown engine” revving. Observation is your best tool for identifying “low frustration-tolerance” in your child. Pay attention and be aware of the warning signs. Watch and listen, whether your youngster is playing a board game with friends, doing homework, or trying to tie her shoes. Keep your eyes and ears open at all times, and look for patterns and connections.
6. Over-stimulation: Although many HFA children enjoy going out to eat, going to malls, attending birthday parties, etc., it can get quite overwhelming for them to the point they start reacting to these unfamiliar surroundings and faces. Many of these kids will exhibit frustration simply because “the unfamiliar” gets to them, especially if there are a lot of foreign noises and smells. Thus, if the environment seems too “sensory-unfriendly” for your child, you may simply want to “bail out” and return home for a time out.
7. Parents rushing around: HFA kids don’t understand time as grown-ups do. They pick up on your anxiety around time constraints, but they are not always able to work quickly in order to meet your demands. If you’re always in a rush and your youngster is always having meltdowns, try to investigate whether there is a connection between the two. Of course there are times when you’re in a rush, and your youngster will need to hurry along. When this happens, state your expectations clearly and take action. For example, you may need to put his shoes on yourself, pick him up, strap him in the car seat, and leave. Try to do this automatically without shouting and resentment. And if you feel like you’re always rushing your “special needs” youngster, make a special effort to slow down where possible.
8. Parents talking on the phone: Sometimes when the parent is talking on the phone for extended periods of time, it can be a trigger for some HFA kids. It’s either the loss of attention that they react to, or the desire to have control over you that gets them to meltdown when you are on the phone. A “call box” has helped many moms and dads get through lengthy phone conversations. Have a box ready with some things inside that your youngster can busy herself with while you spend time on the phone. Of course, you could always choose not to put yourself through the dilemma and make your calls at another time – or keep them as short as possible.
9. Reliance on routine: HFA children tend to rely on routines to keep them comfortable and content. In fact, most of these kids are dependent on routines, because too much activity and change can overwhelm them. A change in routine is a major meltdown trigger that can easily set your youngster off. Thus, try sticking to daily routines as precisely as possible. If you do have to change the routine, make sure your child is well-rested and content. Let her bring a favorite toy or stuffed animal with her if you have to go somewhere. If you notice she is starting to exhibit signs of a meltdown, take her into a quiet place to calm down.
10. Shopping: Shopping is not an enjoyable leisure activity for most HFA children. It can be an assault on your youngster’s senses that leaves her feeling overwhelmed. This is because the sights, sounds, touch and “busy-ness” of everything can cause sensory overload. But if your child survives the sensory assault, then the frustration of not getting everything she wants can lead to a meltdown. So in general, shopping with “special needs” kids is not desirable. But of course there will be times when shopping with your youngster is a necessity. If this is the case, then it would be helpful to keep it short. State your expectations clearly and stick to them. Make your child an active participant rather than a passive bystander. You can do this by giving her a job to do (e.g., help with putting the items into the trolley, unpacking them, choosing them, etc.). But bear in mind that it will be hard for your child to fill up the whole trolley and receive nothing for herself. This is a very high expectation to hold. If you take her shopping, you may want to allow her to get something of her own, but you can define what that is (e.g., her favorite cereal, snack, etc.), and then set the limit at that.
11. Signaling: Signaling is a common behavior modification strategy for children on the autism spectrum. Choose one specific trigger to work on, and then come up with a phrase or hand signal that will serve as an alert to your youngster that the trigger is present. This allows you to make your youngster aware of the trigger subtly in social situations. Once you have alerted her, she’ll have the chance to self-correct. However, if you signal your youngster, but she doesn’t use the response the two of you had planned on, have her take a break from whatever is going on to come speak to you in a quiet place (away from an audience). This is where you step in and help your youngster correct her behavior. Let her know that you gave her the “cue,” but she didn’t respond the way the two of you had discussed. Remind her of what you talked about, and let her know what the consequences will be if she doesn’t use the plan the next time you signal her (today).
12. Teaching “self-observation”: When your child is calm, let him know what you observe regarding the connection between his triggers and his meltdowns (e.g., “I’ve noticed that when you think something is unfair, you get upset and start throwing things”). By connecting the dots for your child, you are helping him learn his triggers. This technique should be part of a problem-solving discussion that includes you and your youngster coming up with a plan for what he will do differently the next time he is in this dilemma.
13. The 3-step plan: If your child appears to be gearing-up for a meltdown, quickly implement this 3-step plan: (1) Acknowledge, (2) Reflect, (3) Insert the reality...
“acknowledge” your youngster’s feelings (e.g., “I can see you’re upset because you lost that game of checkers”)
“reflect” your youngster’s unfulfilled desire, wish or want (e.g., “You don’t like to lose at games”)
“insert the reality” by informing your child of the facts (e.g., “It’s impossible for people to win all the time – nobody’s perfect, so you can try to win the next time”)
This method provides emotional support because it helps your child feel understood. It helps him see that you understand his inner wishes and desires, but it also teaches him that this doesn’t mean “his wish is your command.”
14. Tiredness, hunger and sickness: When your HFA child is tired, hungry or sick, he is running on lower emotional resources to cope with normal expectations, which is the case with ALL kids – but especially those on the spectrum. This means that if tired or hungry or sick, where your child would normally be happy to share, get a bath, get dressed, etc., he will be unhappy. Thus, do what you can to deal with the primary issue – feed your youngster, or get him ready for bed. Then think of how long it will be until he is sleeping. Try not to get hooked into the power struggle. Access your own emotional resourcefulness since your youngster will be running on empty.
15. Transitional experiences: When HFA kids move from one experience to another (e.g., waking up, going to school, moving from “play time” to “homework time,” etc.), it’s a prime opportunity for a meltdown. Many transitional experiences can erupt into meltdowns, because HFA kids don’t like change. They find the transition difficult. It may not be that they don’t want to get a bath or get dressed – it could be that they are protesting at having to change! Thus, give your youngster time to adjust when change occurs. Of course, this is easier said than done when we live in a rush. But, HFA kids do need more time (e.g., in the morning, your youngster may need to stay in his pajamas for a little while before getting dressed). Also, “prepare” your youngster for transitions as often as possible (e.g., “We’re leaving to go to grandma’s house in a 15 minutes. You can start finishing your game”).
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...
