How to Explain the Death of a Loved One to Your Child on the Autism Spectrum

“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.



How to Identify "Meltdown Triggers" in Your Child 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.

==> How to Prevent Meltdowns and Tantrums in Children on the Autism Spectrum

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.

==> How to Prevent Meltdowns and Tantrums in Children on the Autism Spectrum

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:
 

==> Videos for Parents of Children and Teens with ASD
 
----------
 
 
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…

---------------------------------------------------------------

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...

--------------------------------------------------------------

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…

------------------------------------------------------------

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...

Tantrum-Free Transitions for Children on the Autism Spectrum

"How can I make transitions easier for my child (high functioning autistic) in order to avoid his transition-related meltdowns?"

Young people with High Functioning Autism (HFA) usually live in the moment and have difficulty moving from one activity to the next. Stopping an activity in mid-drift interrupts their train of thought, which pushes them out of their comfort zone. 
 
As parents, we are often thinking of what we must do next, or even what happened in the recent past. While it may be easy for us to switch to the next activity, and while we know why a particular switch must occur, kids on the autism spectrum do not think this way. We, as parents, need to think like our “special needs” children.



Transitions happen every day in your youngster’s world. Waking up in the morning, going to school, coming to meals, leaving for an activity, saying goodbye to a friend, and getting ready for bed are all examples of transitions that can cause an HFA youngster anxiety – or worse! And then there are those larger transitions: starting a new school or day care, moving to a new house, losing a loved one, etc. – all of which really take a toll on the youngster’s emotions.

Since each transition is different, and since they happen so frequently, it’s helpful to use a variety of strategies. Moms and dads who provide empathy and support, help their HFA youngster gain a sense of control, create rituals that provide predictability, and teach their youngster ways to cope with change will find far greater success. 
 

Listed below are some important techniques that will help make transitions easier for your youngster:

1. Allow your youngster enough time to transition. Whether you are preparing for a short-term transition from play-time to meal-time, or you have just told your child that the family is planning a trip to Disneyland next month, remember that HFA children process change in their own time; they need time to “grow through” the change depending on how drastic that change is going to be. When planning activities, add in extra time for transitions that is proportionate to the degree of change. For example, if you are experiencing a major life change such as birth, death, divorce, or a move, plan to allow your youngster a few months or more to really adjust to this new experience.

2. Create a list of “house rules” and review them with your child periodically. The rules should include what to do during specific transitions (e.g., how to move from playing video games to getting dressed for Karate class). Post the rules where your child can see them. He or she will become accustomed to the rules, and understand what to do and what to expect throughout the day.

3. Develop a set of rituals, for example: (a) a “chit-chat” ritual at bedtime (e.g., ask your youngster about the happy, sad, scary and frustrating parts to his or her day; (b) a goodbye ritual (e.g., develop a secret handshake with your youngster that’s used only when he or she leaves you; (c) an after-school ritual (e.g., let your youngster have a snack and play outside for 30 minutes before starting homework); (d) an end-of-the-week ritual (e.g., have a “family night” every Saturday to reconnect and unwind after a busy week).

4. Give your child a notice when transitions are approaching. A simple, "In 10 minutes, we are sitting at the dinner table," is enough to give him a little warning. This lets your child know he should be finishing up what he is working on and allows him the chance to wash his hands, find his place at the table, and ease into a new state of mind.

5. Give your child something to look forward to before initiating a transition. For example, if you’re leaving the park to return home, talk about the fantastic things your child can do when he or she gets home.

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

6. Look for natural transitions or breaks that may make it easier to leave or move on. It’s better to end peacefully after 37 minutes than trying to end during a meltdown after 2 hours. Also, keep in mind that transitions, like any other step in your day, will be exacerbated by lack of sleep, hunger, or illness.

7. Picture schedules and cards can be helpful for HFA kids who have a hard time following verbal directions. Pointing to the picture of the next activity, or handing your youngster the picture and letting her carry it to the next activity can be helpful in transitioning.

8. Sing “transition songs” prior to or during transitions. You can find these songs in many children’s book stores, and there are songs for almost any transition (e.g., “Wash Our Hands,” “Going Shopping,” “Time for Bed”). Alternatively, you can make up your own songs (e.g., use a familiar tune like “Row Row Row Your Boat,” and then add your own lyrics).

9. Take one of your child’s special items (e.g., a doll) with you to help make the transition easier for her – anything that makes her feel safe so that it’s easier to shift the focus away from anxiety to something she loves to think about.

10. Talk to your youngster about transitions, and be willing to listen and observe. A good way to start a discussion about transitions, in general, is through social stories. Consider creating a story around “how to calmly move from one task to the next.”





11. Transitions offer families an opportunity to grow together through difficulty or challenge by finding new ways to cope and manage life. Allow some time to brainstorm alternatives if, for example, a switch from the car to the church doesn’t go well, or a move to a new school is failing miserably. Be open to alternatives you haven’t thought of before.
 

12. Try to avoid giving sudden orders and directions. Before wanting your child to transition, go into his “safe zone” (i.e., whatever he is doing at the moment) and connect with him mentally, emotionally and physically. Talk to your child about what he is doing or something he truly loves. Then, keep that connection going and take it with you while you both move to the next activity.

13. When attempting a transition, keep the focus on the fun your child had with her activity and ask questions while you move on to the next activity. It helps her shift from being upset about leaving the current activity to keeping the good feeling with her longer (it’s like saying, “Don’t be upset that the activity is over …be happy that it happened”).

14. Young people with HFA handle change differently. Some can sail from one activity to another, while others have a hard time and fight even a little change. Talk with an autism specialist who can assist you and make the journey more pleasant for the whole family.

15. Remember, even though your youngster may put up a fight, you are the one setting the rules and limits. For example, if it’s time to leave the playground, it’s time to leave the playground. And luckily (at least for a little while) you are bigger than your child is and can scoop him up under your arms when all else fails!

Transitions will always be difficult for kids on the autism spectrum. Developmentally, they're simply not well-equipped to leave an activity they're enjoying and move to a potentially less desirable one. But thankfully, there are many ways parents can help their kids through these transitions.



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

==> Videos for Parents of Children and Teens with ASD
 
----------
 
 
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…

---------------------------------------------------------------

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...

--------------------------------------------------------------

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…

------------------------------------------------------------

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.

Click here for the full article...
 
------------------------------------------------------------
 
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.

Click here for the full article...

Raising Kids with Autism Spectrum Disorder: Parents' Grief and Guilt

Some parents grieve for the loss of the youngster they   imagined  they had. Moms and dads have their own particular way of dealing with the...