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 situation based on a number of factors (e.g., their personality style, life experiences and support systems, among others).

Clearly there are a range of stages and coping techniques, such as denial, depression, anger and rationalization. Most families recognize, at least at some level, that there is something significantly wrong with their "special needs" youngster. To at last be given a name for it (i.e., ASD level 1,  or High-Functioning Autism) can be a relief.

Certainly, having a clearer understanding of what is wrong affords the opportunity to obtain appropriate services, as well as to begin to think about the youngster in a different, and hopefully more helpful way.

Grief—

The grief surrounding the diagnosis of an Autism Spectrum Disorder (ASD) is compounded by tremendous confusion and uncertainty. Many moms and dads have little understanding of what the diagnosis entails. Many have the inaccurate perception that all kids with ASD are non-verbal, mentally retarded, extremely remote and possibly self-abusive. Parents must become informed about the varied presentations of ASD. This spectrum is a long one with extremely impaired individuals at one end, but highly capable ones on the other.

While the continuum is long, the potential of any particular youngster is unclear. The course of the disorder is extremely hard to predict at an early age. Some very impaired looking toddlers go on to become high functioning adults, including adults with Asperger's. As one parent said, “The problem is we don’t know if he is going to become a rocket scientist or work in a sheltered workshop.”

After learning of the diagnosis on an autism spectrum disorder, the family is forced not only to come to terms with what may be a devastating handicap, but is thrust almost immediately into making many critically important decisions. To champion the youngster’s cause at the same time one must begin to grieve is truly an untenable position. 

It is as if one must – overnight – and while grieving – become an expert in ASD and its treatment, despite tremendously conflicting opinions. There is considerable support to the notion that the availability of early, intensive intervention offers the best hope for improvement. While this hope leads to a sense of optimism, the message that services must be implemented immediately and intensively can also feel overwhelming.

In addition to decisions about what kind of schooling their youngster should have, moms and dads must also make decisions about such treatments and services as speech therapy and occupational therapy. What about sensory integration? Auditory retraining? Facilitated communication? Medication? Behavior modification? Many times the approaches seem confusing and even contradictory, with proponents claiming success and even cures. How is a parent, especially one in the midst of grieving, and of desperately hoping for help, supposed to make informed, intelligent choices?

The grief work in the families of kids with an ASD is an ongoing process. In most families, there are periods of greater and lesser intensity to the grieving. This intensity may partly relate to developmental issues in the youngster. For example, birthdays or other rites of passage (e.g. Bar Mitzvahs, graduations, etc.) may underscore how different the youngster is from his typical peers. Grief intensity may also relate to more personal, individual factors. These factors include such things as one’s own temperament, history, supports and losses.

In addition to the waxing and waning in the intensity of grief, there is typically an alternation of hope and despair. Each new treatment or program for the youngster is often accompanied by an increase in optimism in the parents. If the new treatment or program is deemed unsuccessful, despair may follow, only to be replaced by hope once again, when a new plan is implemented.

Feelings of jealousy and anger are common in many families. These feelings may be directed towards other families who do not have to contend with such stresses or towards other families with disabled kids whose kids are higher functioning or have improved to a greater extent. Many families also experience feelings of anger and frustration towards professionals for a variety of reasons. These reasons include not diagnosing properly, insensitivity, offering false hope or providing inadequate or ineffective treatments or services.

One variant of grief that sometimes occurs in the families of higher functioning kids, particularly those with Autism, is the sense that the youngster “should” be doing better than he is because he is so bright. There may be feelings of frustration that “normalcy” is so close, yet still out of reach. For some of these kids and their families, graduation from high school is a particularly stressful time. For the parents, there may be the sadness that their youngster is not yet able to be independent the way their typically developing peers are. Finding work is often challenging for those on the autism spectrum, and support services are usually quite limited for this population.

Guilt—

Guilt is another common reaction to the diagnosis of ASD in a youngster. Fortunately, the medical and professional community no longer hold to the notion that autism is a result of parental failing. Today, there is widespread acceptance of the fact that ASD is a genetically based disorder. The possible contribution of additional factors, such as environmental toxins, is currently being studied.

This change in perspective, from parental failing to genetic loading, has not eradicated parental guilt, although in most cases it has lessened it. Many moms and dads wonder what they unwittingly did to contribute to their youngster's disorder. Were they exposed to too much mercury from injections or dental fillings? Was the termite control treatment of their house the culprit?

There have been articles in the press on the high incidence of ASD in Silicon Valley. Time Magazine entitled the phenomenon the "Geek Syndrome" in the article "The Secrets of Autism". This term has led some to speculate that the blame has shifted from “refrigerator mothers” to “geek fathers.” Said differently, believing genetics is the cause does not necessarily eradicate the guilt parents feel. Unfortunately, in some cases, it seems to confirm their fears about having caused or contributed to their youngster’s disability.


Parenting Children & Teens on the Autism Spectrum: Support & Education

 


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ASD Meltdown-Management: Key Points for Parents of Kids on the Autism Spectrum

A meltdown is a condition where the youngster with ASD level 1, or High Functioning Autism, temporarily loses control due to emotional responses to environmental factors. It generally appears that the youngster has lost control over a single and specific issue, however this is very rarely the case. 

Usually, the problem is the accumulation of a number of irritations which could span a fairly long period of time, particularly given the strong long-term memory abilities of young people on the autism spectrum.

Why The Problems Seem Hidden—

ASD kids don't tend to give a lot of clues that they are very irritated:
  • Often ASD child-grievances are aired as part of their normal conversation and may even be interpreted by NTs (i.e., neurotypicals, or people without autism) as part of their standard whining.
  • Some things which annoy ASD kids would not be considered annoying to NTs, and this makes NT's less likely to pick up on a potential problem.
  • Their facial expressions very often will not convey the irritation.
  • Their vocal tones will often remain flat even when they are fairly annoyed.

What Happens During A Meltdown—

The meltdown appears to most people as a temper tantrum. There are marked differences between adults and kids. Kids tend to flop onto the ground and shout, scream or cry. Quite often, they will display violent behavior such as hitting or kicking.

In adults, due to social pressures, violent behavior in public is less common. Shouting outbursts or emotional displays can occur though. More often, it leads to depression and the ASD man or woman simply retreats into themselves and abandons social contact.

Some ASD kids describe the meltdown as a red or grey band across the eyes. There is a loss of control and a feeling of being a powerless observer outside the body. This can be dangerous as the ASD youngster may strike out, particularly if the instigator is nearby or if the "Aspie" is taunted during a meltdown.

Depression—

Sometimes, depression is the only outward visible sign of a meltdown. At other times, depression results when the ASD youngster leaves the meltdown state and confronts the results of the meltdown. The depression is a result of guilt over abusive, shouting or violent behavior.

Dealing With Meltdowns—

Unfortunately, there's not a lot you can do when a meltdown occurs in a child on the autism spectrum. The best thing you can do is to train yourself to recognize a meltdown before it happens and take steps to avoid it.

Example from one mother: "ASD kids are quite possessive about their food, and my autistic child will sometimes decide that he does not want his meat to be cut up for him. When this happens, taking his plate from him and cutting his meat could cause a full-blown meltdown. The best way to deal with this is to avoid touching it for the first part of the meal until he starts to want my involvement. When this occurs, instead of taking his plate from him, it is more effective to lean over and help him to cut the first piece. Once he has cut the first piece with help, he will often allow the remaining pieces to be cut for him."

Once the youngster reaches an age where they can understand (around age 4 or so), you can work on explaining the situation. One way you could do this would be to discreetly videotape a meltdown and allow them to watch it at a later date. You could then discuss the incident, explain why it isn't socially acceptable, and give them some alternatives.

One adult "Aspie" stated the following:

"When I was little, I remember that the single best motivation for keeping control was once when my mother called me in after play and talked about the day. In particular, she highlighted an incident where I had fallen down and hurt myself. She said, 'Did you see how your friend started to go home as soon as you fell down because they were scared that you were going to have a meltdown?' She went on to say, 'When you got up and laughed, they were so happy that they came racing back. I'm proud of you for controlling your emotions.' That was a good moment for me that day. It really gave me some insight into how I tended to respond quickly without much forethought. I carried this with me for years later and would always strive to contain myself. I wouldn't always succeed, but at least I was trying."

Meltdowns And Punishment—

One of the most important things to realize is that meltdowns are part of the ASD condition. You can't avoid them; merely try to reduce the damage. Punishing an ASD youngster for a meltdown is like punishing someone for swearing when they hit their thumb with a hammer. It won't do any good whatsoever and can only serve to increase the distance between you and your youngster.

In addition, meltdowns aren't wholly caused by the current scenario, but are usually the result of an overwhelming number of other issues. The one which "causes" the meltdown is the straw that breaks the camel’s back. Unless you're a mind reader, you won't necessarily know what the other factors are, and your ASD youngster may not be able to fully communicate the problem.

Every teacher of ASD students and every mom or dad of an ASD child can expect to witness some meltdowns. On average, meltdowns are equally common in boys and girls, and more than half of autistic kids will have one or more per week.

At home, there are predictable situations that can be expected to trigger meltdowns, for example:
  • bath time
  • bedtime
  • car rides
  • dinner time
  • family activities involving siblings
  • family visiting another house
  • getting dressed
  • getting up
  • interactions with peers
  • mom or dad talking on the phone
  • playtime
  • public places
  • visitors at the house
  • watching TV

Other settings include:
  • answering questions in class
  • directives from the teacher
  • getting ready to work
  • group activities
  • individual seat work
  • interactions with other children
  • on the school bus
  • the playground
  • transitions between activities

From time to time, all ASD kids will whine, complain, resist, cling, argue, hit, shout, run, and defy authority figures. Meltdowns, although normal, can become upsetting to parents and teachers because they are embarrassing, challenging, and difficult to manage. Also, meltdowns can become particularly difficult to manage when they occur with greater frequency, intensity, and duration than is typical for the age of the ASD kid.

There are nine different types of temperaments in kids on the spectrum:

1. Distracted temperament predisposes the kid to pay more attention to his or her surroundings than to the caregiver.

2. High-intensity level temperament moves the kid to yell, scream, or hit hard when feeling threatened.

3. Hyperactive temperament predisposes the kid to respond with fine- or gross-motor activity.

4. Initial withdrawal temperament is found when kids get clingy, shy, and unresponsive in new situations and around unfamiliar people.

5. Irregular temperament moves the kid to escape the source of stress by needing to eat, drink, sleep, or use the bathroom at irregular times when he or she does not really have the need.

6. Low sensory threshold temperament is evident when the kid complains about tight clothes and people staring and refuses to be touched by others.

7. Negative mood temperament is found when kids appear lethargic, sad and lack the energy to perform a task.

8. Negative persistent temperament is seen when the kid seems stuck in his or her whining and complaining.

9. Poor adaptability temperament shows itself when kids resist, shut down, and become passive-aggressive when asked to change activities.

Around age 2, some ASD kids will start having what I refer to as "normal meltdowns." These bouts can last until approximately age 4. Some parents (thinking in terms of temper tantrums) mistakenly call this stage "the terrible twos," and others call it "first adolescence" because the struggle for independence is similar to what is seen during adolescence. Regardless of what the stage is called, there is a normal developmental course for meltdowns in children on the autism spectrum.

Children on the spectrum  during this stage will test the limits. They want to see how far they can go before mom or dad stops their behavior. At age 2, ASD kids are very egocentric and can't see another person’s point of view. They want independence and self-control to explore their environment. When they can't reach a goal, they show frustration by crying, arguing, yelling, or hitting. When their need for independence collides with the parents' needs for safety and conformity, the conditions are perfect for a power struggle and a meltdown. 

A meltdown is designed to get the parents to desist in their demands or give the child what he or she wants. Many times, ASD kids stop the meltdown only when they get what is desired. What is most upsetting to parents is that it is virtually impossible to reason with ASD kids who are having a meltdown. Arguing and cajoling in response to a meltdown only escalates the problem.

By age 3, many young people on the spectrum are less impulsive and can use language to express their needs. Meltdowns at this age are often less frequent and less severe. Nevertheless, some preschoolers have learned that a meltdown is a good way to get what they want.

By age 4, most ASD kids have the necessary motor and physical skills to meet many of their own needs without relying so much on the parent. At this age, these young people also have better language that allows them to express their anger and to problem-solve and compromise. Despite these improved skills, even kindergarten-age and school-age ASD kids can still have meltdowns when they are faced with demanding academic tasks and new interpersonal situations in school.

It is much easier to “prevent” meltdowns than it is to manage them once they have erupted.  Here are some tips for preventing meltdowns and some things you can say:

1. Avoid boredom. Say, “You have been working for a long time. Let’s take a break and do something fun.”

2. Change environments, thus removing the child from the source of the meltdown. Say, “Let’s go for a walk.”

3. Choose your battles. Teach them how to make a request without a meltdown and then honor the request. Say, “Try asking for that toy nicely and I’ll get it for you.”

4. Create a safe environment that these children can explore without getting into trouble. Childproof your home or classroom so they can explore safely.

5. Distract them by redirection to another activity when they meltdown over something they should not do or can't have. Say, “Let’s read a book together.”

6. Do not "ask" ASD kids to do something when they must do what you ask. Do not ask, “Would you like to eat now?” Say, “It's dinnertime now.”

7. Establish routines and traditions that add structure. For teachers, start class with a sharing time and opportunity for interaction.

8. Give these children control over little things whenever possible by giving choices. A little bit of power given to the kid can stave-off the big power struggles later (e.g., “Which do you want to do first, brush your teeth or put on your pajamas?”).

9. Increase your tolerance level. Are you available to meet the ASD kid’s reasonable needs? Evaluate how many times you say, “No.” Avoid fighting over minor things.

10. Keep a sense of humor to divert the child's attention and surprise him or her out of the meltdown.

11. Keep off-limit objects out of sight and therefore out of mind. In an art activity, keep the scissors out of reach if the child is not ready to use them safely.

12. Make sure that ASD kids are well rested and fed in situations in which a meltdown is a likely possibility. Say, “Dinner is almost ready, here’s a cracker for now.”

13. Provide pre-academic, behavioral, and social challenges that are at the ASD kid’s developmental level so that he or she doesn't become frustrated.

14. Reward them for positive attention rather than negative attention. During situations when they are prone to meltdowns, catch them when they are being good and say things like, “Nice job sharing with your friend.”

15. Signal them before you reach the end of an activity so that they can get prepared for the transition. Say, “When the timer goes off 5 minutes from now, it will be time to turn off the TV and go to bed.”

16. When visiting new places or unfamiliar people, explain to the child beforehand what to expect. Say, “Stay with your assigned buddy in the museum.”

There are a number of ways to “handle” a meltdown that is already underway.  Strategies include the following:

1. Hold the ASD  kid who is out of control and is going to hurt himself or herself (or someone else). Let the child know that you will let him or her go as soon as he or she calms down. Reassure the child that everything will be all right, and help him or her calm down. Moms and dads may need to hug their Aspergers kid who is crying, and say they will always love him or her no matter what, but that the behavior has to change. This reassurance can be comforting for an Aspergers kid who may be afraid because he or she lost control.

2. If the youngster has escalated the meltdown to the point where you are not able to intervene in the ways described above, then you may need to direct the child to time-out. If you are in a public place, carry your child outside or to the car. Tell him that you will go home unless he calms down. In school, warn the student up to three times that it is necessary to calm down, and give a reminder of the rule. If the student refuses to comply, then place him in time-out for no more than 1 minute for each year of age.

3. Remain calm and do not argue. Before you manage her, you must manage your own behavior. Punishing or yelling at the child during a meltdown will make it worse.

4. Talk with the child after he has calmed down. When he stops crying, talk about the frustration the he has experienced. Try to help solve the problem if possible. For the future, teach the child new skills to help avoid meltdowns (e.g., how to ask appropriately for help, how to signal an adult that he  needs to go to “time away” to “stop, think, and make a plan” ...and so on). Teach the Aspergers kid how to try a more successful way of interacting with a peer or sibling, how to express his feelings with words, and recognize the feelings of others without hitting and screaming.

5. Think before you act. Count to 10 and then think about the source of the ASD kid’s frustration, the child’s characteristic temperamental response to stress (e.g., hyperactivity, distractibility, moodiness, etc.), and the predictable steps in the escalation of the meltdown.

6. Try to intervene before the youngster is out of control. Get down at her eye level and say, “You are starting to get revved up, let's slow down.” Now you have several choices of intervention.

7. You can ignore the meltdown if it is being thrown to get your attention. Once the ASD kid calms down, you can give the attention that is desired.

8. You can place the youngster in "time away." Time away is a quiet place where he goes to calm down, think about what he needs to do, and with your help, make a plan to change the behavior.

9. You can positively distract the child by getting her focused on something else that is an acceptable activity (e.g., remove the unsafe item and replace with an age-appropriate game).

Post-Meltdown Management—

1. Do not reward the child after a meltdown for calming down. Some kids will learn that a meltdown is a good way to get a treat later.

2. Explain to the child that there are better ways to get what she wants.

3. Never let the meltdown interfere with your otherwise positive relationship with your child.

4. Never, under any circumstances, give in to a meltdown. That response will only increase the number and frequency of the meltdowns.

5. Teach the youngster that anger is a feeling that we all have, and then teach her ways to express anger constructively.


Best Comment—

My name is Sharon, I have been with Elliott for over ten years and we have a son Brandon who is 6 yr old. They both have aspergers syndrome we are awaiting Brandon’s appointment with the paediatrician consultant for diagnosis, but I am 110% sure it will be aspergers. I am feeling in the thick of it of late I have and am constantly looking for local support and forums online etc to reach out for guidance and any support also to offer my own support to others. I am a person centred therapist and in the past have worked in supporting children and adults on the autistic spectrum, I do have a good insight into the autistic spectrum but nothing prepares you for how it feels actually living 24/7 with it.

Firstly the biggest part for me is the heart break and hurt I feel for my son, then the worry and concern how he will get along in life. I am very pro active and of late have worked well with school to best advise them how we support Brandon’s needs it’s been an uphill struggle for the last year especially as they don't seem to have the knowledge or the amenities to support him.

I have been called to school several times of late because of his "disruptive" behaviour,, basically his stimming he does get louder if in a louder environment the teachers know this is a trigger and he is left alone to deal with this instead of being prepared for a change of noise or scenery or even a much needed teaching assistant who could work alongside him. If he gets too disruptive he is taken out of the class environment for "time out" is this a good way of dealing with it? As we have told school time out at home is if he is naughty, which generally he is never naughty. we have what we call quiet time at home where sometimes when he feels over load we just find a quiet place to sit together and relax or read whatever he wants really but it brings him down and more settled to cope better.

Again it will mean another meeting or ten..... To resolve or make a better learning environment for Brandon. They say they can’t do anything till he’s been statemented and funded for an assistant or further support. But they will assist him as best they can and I do feel listened to but there is of late something new nearly every day that needs adaption which imp fine with I am aware he defiantly needs some support. I have been on an emotional roller coaster.

It feels so isolating as support around this neck of woods is minimal. Brandon’s upset of late is his lack of friends he just wants his family to be at school all day every day his words because we love him! So the social aspect this is. So I discussed with head teacher and she has set a buddy system up for him its yet to be seen to be working, as I know how difficult it is for Brandon to mix and communicate with his peers and when he does he gets rejected.

We have tried so many routes with this he seems to connect with kids in play areas as he and they are generally being quite boisterous but its time limited so he feels less pressure. We are also in process of groups i.e. dancing as he loves to dance (street dance) and maybe other recreations of his choice. It feels like a very long a winding road what we are on I know I haven't spoke much bout Elliott having spent ten years with him would have thought Brandon’s aspergers may come easier to me understanding wise yes but on a personal level it’s so upsetting.

Other points are his eating habits he is a very bland eater and eats the same few foods we supplement with vitamins he is quite small in frame but eats quite well the foods he does enjoy think they call it the beige diet he has no colour in his food at all (pasta, no sauce, chicken nuggets, crisps plain flavour, crumpets, bread, some types of rice, certain chocolate, milk, Yorkshire puddings) there’s a few more but as you can see limited. We have tried so many different ways to entice him I would be grateful if you could give me any tips.

Feels like I am going on now, the list goes on his sensory issues really do dictate to him and us how the day goes sometimes, and he is becoming more and more aware of his stims and repetitive behaviour today its clapping and repeating words it was a machine gun noise (constantly)and random moves it varies from day. I feel I need more guidance in how to help/support Brandon. The melt downs are becoming more and more but he only does this with his dad I have a calming effect as soon as he starts in melt down they pretty much calm after I’ve been around him a few minutes. The routines he has etc seem to help a lot too.

If you can pull anything out of this letter and feedback I would be grateful there will be things I have missed but feel free to ask me any further questions. He also as 3 older step siblings 15, 19, 21 and they are very loving and supportive with him and very understanding. He as a great relationship with all of us in our family unit. Feels like the outside world is a daunting prospect right now.

More comments below...

ASD Teenagers and "Homework-Related" Meltdowns: Tips for Frustrated Parents

“My 14 yr. old daughter with ASD (level 1) basically refuses to do her homework. It’s a daily struggle that results in meltdown. Desperate ...please help! Any advice will be greatly appreciated.”

As most parents already know, ASD level 1, or High Functioning Autism (HFA), disrupts the youngster’s academic abilities in multiple areas (e.g., a lowered tolerance for new situations or sudden transitions, lack of organizational skills, inconsistent energy levels, high distractibility, excessive interest in only one or two subjects to the exclusion of all others, etc.). 

All of these can present challenges when attempting to complete homework. Fortunately, there are some basic strategies that moms and dads can undertake to help prevent those dreaded evening meltdowns related to homework.

Let’s look at some specific strategies to help your HFA teenager follow through with completing homework…

1. Break-Down Large Assignments— Since some homework assignments can be overwhelming for kids with HFA, parents may need to work closely with their youngster to help her get started. Providing one or two examples may be all that is required in some cases. For more complicated work, moms and dads may want to demonstrate how to break it down into smaller steps. This added attention may be needed for each unfamiliar assignment.

2. Eliminate Vagueness— Some assignments may be unclear to the child (and even to parents). If this happens often, it would be best for you to communicate with the teacher about your youngster’s needs. Receiving more detailed instructions for upcoming assignments will go a long way to ensuring that homework gets done correctly and without meltdowns. The key is to get the information ahead of time so that your youngster can be prepared for – not surprised with – an unknown.

3.  Establish Consistent Time and Place— Observe your youngster and see what hinders her from completing her work. This is paramount to planning homework sessions. During these observations, jot down answers to the following questions about your youngster: Does she fatigue quickly? Is she easily distracted by noise or activity? What frustrates or upsets her? What is her best time of day?

After observing your youngster for a few days, establish a consistent time for homework, preferably when she is well fed, rested and at her best. The amount of time she spends on homework nightly will vary by grade level. When homework length begins to increase, she may stay more focused with short breaks. Incorporate these into the schedule and make sure she has enough time to complete assignments without rushing. It’s also helpful to have a special homework location away from the TV, radio, or other distractions. In addition, kids with HFA can be frustrated by clutter, so make sure that the workspace is organized and that all necessary materials for homework are available and easy to find.

4. Incorporate Interests— A unique quality of high functioning kids on the autism spectrum is that they can develop abnormally intense interests in one or two subjects (e.g., weather, sports statistics, computers, etc.). Using a little ingenuity, moms and dads can persuade the youngster to do seemingly unrelated work by integrating her interests. For example, kids fascinated by computers may be encouraged to complete writing assignments using an online dictionary. Kids who have nightly reading requirements could be allowed to choose books that are related to weather, dinosaurs, or other science topics of interest. If the youngster seems to dislike math, create word problems for practicing addition, subtraction, and multiplication using subjects such as baseball or cars.

5. Provide Daily Routine in Other Areas of the Child’s Life— Homework can be easier for kids on the spectrum when they are already used to a lot of structured, daily routines. A child who has developed the habit of feeding the dog every day immediately after school, for example, will be more likely to do homework every day immediately after dinner. Getting started with a highly-structured daily routine when the child is young goes a long way in avoiding "homework battles" during adolescence.

Kids with HFA possess unique skills and can grow to be highly productive, thriving members of society. But, like everyone, they face their own set of challenges along the way. Homework may be one of those challenges. With careful planning however, moms and dads can make this necessary and important chore less problematic and help to pave their youngster’s way to academic success.


COMMENTS:

•    Anonymous said… Does she have an IEP or 504? Does she really need the homework to keep up on grades? You could request shortened or no homework, or time for her to do it in school.
•    Anonymous said… Hi, my Son doesn't like Monday's finds it hard and often spikes his anxiety. I have now told him that we have 'no homework Monday's' which has elieviated Meltdowns from school. Monday evenings are more for arts and crafts and leggo. But he knows Tuesdays, Wednesdays and Thursdays are homework days for Math, Eng and Reading. It seems to be working. I think it's about placing a compromise and balance which will engage and help your child. Hope this helps
•    Anonymous said… I arranged with the school to only have maximum 30 min of homework a night...then put a visual timer on so she knows how long she has to do her homework! Helps a lot!
•    Anonymous said… I don't know how we got to the point where he goes and get it done other than living through the tantrums. He would be grounded from his tablet and electrons. We tried to focus him on goals, cillege, what he wants to be and that it has to get done. It's okay to not like it but it has to get done. It's been a very rough 2 years but seeing an improvement this year most days....not all
•    Anonymous said… I have Asperger's myself and I have specific interests like certain kinds of music. If I were your daughter and I refused to do my homework, you could forbid me to listen to any music and I would do my homework then. It's the motivation that you'll get things you desire if the important work gets done first. Hope that helps!
•    Anonymous said… I think exemptions should only be used as a last resort. They have to learn that you have to do things you don't like. It's a part of life. Believe me I have lived the tantrums the screaming the crying the throwing things the hitting the I hate you your ruining my life. It's he'll but they have to learn and grow and hw is part of it
•    Anonymous said… School is 6 hours a day 5 days a week. Each to their own. My son is doing really well at school therefore we don't need to go through unnecessary meltdowns etc. We pick our battles and at this point we are happy he goes to school.
•    Anonymous said… Thanks for the article, very interesting.

Post your comment below…

Preventing Meltdowns in Students with ASD: Advice for Teachers

"Do you have any simple, 'cut-to-the-chase' advice I could share with my son's teacher (who seems to know very little about how to handle students on the autism spectrum who 'meltdown')? He is currently in the 6th grade and has a new teacher."

Sure. Here goes...


Students with ASD level 1, or High Functioning Autism (HFA), desperately need support from educators when they struggle with emotional and behavioral issues in school. Here are many helpful strategies that every teacher should know:

HFA can co-exist with other disorders (e.g., ADHD, depression, anxiety). But mostly, this disorder affects the ability to socialize. These youngsters have difficulty recognizing facial expressions, sarcasm, and teasing, and struggle to adapt to unexpected changes in routine. Their interests tend to be very narrow, and this can limit their capacity to relate to others.

Due to these struggles, kids on the autism spectrum oftentimes experience anger, fear, sadness, and frustration. There are several effective interventions that can be employed in the classroom to help improve the youngster’s learning experience. These can assist the student in feeling more comfortable and decrease anxiety, paving the way for academic achievement.
 

1. Make a Plan for Emotional Outbursts— Provide a quiet place for the student who has frequent meltdowns. This may be a trip to the bathroom with a classroom aide, or a visit to the school counselor. A written plan for coping in these periods of high stress is critical for an HFA student’s success.

2. Make Classroom Rules Clear— Students with HFA thrive on rules, but will often ignore them when they are vague or not meaningful. Educators should detail the most important classroom rules and why they exist. A written list prominently displayed, or a handout of the classroom rules can be very helpful.

3. Minimize Surprises in the Classroom— Youngsters on the autism spectrum need structured settings to succeed. They do not like surprises. Things like sudden seating changes or unexpected modifications to the routine could cause anxiety and even meltdowns. Educators should try to provide ample warnings if there is to be a change of plans (e.g., sending a note home to the parent if a seating change is imminent).

A back up plan can be presented to the class in anticipation of schedule changes (e.g., when the Friday schedule that usually includes watching an educational film in the afternoon changes if time is short, the teacher should inform the students ahead of time that they will work on free reading or journaling instead).

4. Promote Supportive Friendships— If it seems appropriate, educate the class about autism spectrum disorders. Develop empathy by making students aware of inappropriate words and bullying behaviors. Highlight the "special needs" youngster’s strengths in classroom lessons to enable him to find friends with common interests.

If the student on the spectrum seems to be struggling with friendships, group him during classroom activities with those that are more kind and empathetic. At recess or lunch, try assigning a “classroom buddy” who will be supportive and guide the youngster through those more chaotic times.

5. Provide Sensory Support— Many kids with HFA also experience sensory processing issues. Sensitivity to light, sound, touch, taste, and smells can irritate the youngster, making him more likely to act out or withdraw. Consult the mom or dad to determine what these sensitivities are. Minimizing classroom chaos, noise, and clutter will be a good start.

If possible, get help from an occupational therapist and try to work sensory breaks into the youngster’s school day. Chores such as returning a load of books to the library, or even doing a few jumping jacks in the hallway, can go a long way in helping the youngster realign and get back to learning.

Helping kids with HFA in the classroom is yet another challenge for today’s overburdened educators. However, with insightful monitoring, parental and professional guidance, and creative strategies, a love of school and learning can be fostered in these young people kids.

Is it ASD, ADHD, or Both?

"My 6-year-old son was diagnosed with ADHD at age 5. But now we are seeing signs that he may have 'high functioning' autism. What percentage of ADHD children also have autism? Is a dual diagnosis common?"

Most kids with ASD level 1 (high functioning autism) don’t receive that diagnosis until after age 6. Usually, they are diagnosed with ADHD as toddlers. Part of the reason is that physicians routinely screen kids for ADHD but not for autism. 
 
Another reason is that an ASD child's social impairment becomes more evident once he starts school. Finally, physicians are reluctant to label a youngster "autistic." It is okay - and even a badge of honor - to have a hyperactive youngster, but it is another thing entirely to have an autistic youngster.

Physicians make their diagnoses based on the youngster’s behaviors. Since kids with ADHD and ASD share similar behaviors, the two can appear to overlap. However, there is a fundamental difference between the two. For example:
  • An autistic child can appear unfocused, forgetful and disorganized like a youngster with ADHD, but there is a difference. The ADD youngster is easily distracted. The ASD child has no "filter."
  • Autistic children don’t understand that relationships are two-sided. If an ASD child talks on and on in an unmodulated voice about his particular interest, he simply does not understand that he is boring his friend and showing disinterest in his friend's side of the conversation. On the other hand, the youngster with ADHD can’t control himself from dominating the conversation.
  • Autistic children lack what physicians call "social reciprocity" or Theory of Mind. Theory of Mind is "the capacity to understand that other people have thoughts, feelings, motivations and desires that are different from our own." Kids with ADHD have a Theory of Mind and understand other people's motives and expectations. They make appropriate eye contact and understand social cues, body language and hidden agendas in social interactions. ASD children can’t.
  • Autistic children tend to get anxious and stuck about small things and can’t see the "big picture." Kids with ADHD are not detailed-oriented.
  • Both have social difficulties, but for different reasons.
  • Both kinds of kids can tantrum, talk too loud and too much and have problems modulating their behaviors and making friends.
  • If the unfocused autistic child is "nowhere," the obsessive-compulsive and "fantasy" autistic  child is somewhere else. "Fantasy children" retreat into a world of their own making - a world where everything goes the way they want it to. They play video games for hours or retreat into books and music. Their daydreaming and fantasizing resembles the behaviors of non-hyperactive kids with ADHD.
  • Kids with ADHD respond to behavioral modification. With ASD, the disorder is the behavior.
  • Obsessive-compulsive ASD children live a world they create from rules and rituals. Like ADHD kids, they appear preoccupied and distracted, but for different reasons. They appear distracted because they are always thinking about their "rules” (e.g., Did I tie my shoelaces right? Did I brush my teeth for 120 seconds?).
  • The ADHD youngster understands the rules but lacks the self-control to follow them. The autistic child does not understand the rules.
  • The autistic child views everything in her environment as equally important. Her teacher's dangling earring is as important as what she writes on the blackboard. The ASD child does not understand that she does not have to memorize the entire textbook for the next test. She does not "get" such rules.
  • The youngster with ADHD knows what to do, but forgets to do it. ASD children don’t know what to do.

Some researchers estimate that 60% to 70% of ASD-Level 1 children also have ADHD, which they consider a common comorbidity of ASD. Other researchers say that the two can’t exist together. Still others insist physicians have it all wrong and that the two disorders are the same.

The real problem is that there is no hard science. No one knows exactly how slight imperfections in brain structure and chemistry cause such problems. For this reason, getting the right diagnosis for a youngster who exhibits behavior problems may take years of trial and error. Diagnosis is based on observation of behaviors that are similar for a myriad of disorders. 

The tragedy is that the youngster often does not receive the correct medications, educational strategies, and behavioral modification techniques that could help him function on a higher level. He falls farther behind his peer group and loses ground when he could be getting appropriate treatments.


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… fabulous info! thank you....
•    Anonymous said… Great article, thanks!
•    Anonymous said… My son haznt got any speech delays but shows every sympton of aspie but they wont diagnose him they wana diagnose him wid adhd an attachment disorder cus he waz poorly when a babie im still thinkin aspergers thow
•    Anonymous said… My son is 11 and still officially 'undiagnosed'!!!
•    Anonymous said… my son was diagnosed smack bang on the age of 6 ... no speech delay for this man . cant shut him up since the age of one !!! but other things make sense now . hes nearly seven :)
•    Anonymous said… My son was diagnosed with autism at 3. He is now 11 and presents as a child with Aspergers but at 3 there was speech delay.
•    Anonymous said… My son was just diagnosed at 7... at three he was diagnosed with speech delay anxeity disorder and ocd....
•    Anonymous said… the doctor that diagnosed my daughter said the only difference between asperger's and high functioning autism is the speech delays in the early years 
•    Anonymous said... Adhd n add will never be on the spectrum. Add n adhd are commonly diagnosed with Aspergers because some of the "symptoms" are in both. Sensory issues are in almost every child with an ASD.
•    Anonymous said... I have 2 with adhd and one with asd. While a few of the symptoms are the same, and a child can have both, I could not imagine add or adhd being on the spectrum in any way ever.
•    Anonymous said... My son has asbergers adhd ocd and generalized anxiety disorder
•    Anonymous said... They are talking about putting ADD and ADHD on the spectrum, so your question is yes. Going to share your page.
•    Anonymous said... yes my son was diagnosed with adhd when he started school but he always had the aspergers tendencies. he has been re diagnosed as adhd-asd-aspergers syndrome.
•    Anonymous said… I agree. My 15 year old son was diagnosed with ADHD at 5 but wasn't given a formal diagnosis of Aspergers till he was 9. One of the reasons for the delay was other cases where the disability was evident took precedent. Unfortunately, in cases such as Autism or FASD where the disability is "invisible" or intangible, individuals are more often than not last priority in psychological assessments in school.
•    Anonymous said… I've had a lot of anger towards the specialists who were a part of diagnosing my son with ADHD when he was 5. I always knew it wasn't the answer, and sought help from different sources (pediatrician, school special education team, therapists...) only to feel like I was going crazy because I was the only one who didn't want to medicate him for ADD. Four (long and tough) years later, we're in the process of an autism assessment. The more I read about the spectrum, the more I feel that it's so blatantly obvious that autism symptoms are what have been ailing him and causing his issues at school for so long; and it has made me angry that those specialists (who should be familiar enough with those symptoms) didn't see it or suggest it 4 years ago. This article helped me come to peace with that a little bit. I still find it strange that doctors routinely screen for ADHD over autism, and I think it's because there is medication for ADHD, a quick fix, where ASD takes a lot more time/resources/intervention.
•    Anonymous said… Very common to have both diagnosis. Actually, having only Aspergers is more rare. Aspies usually have a second diagnosis of ADHD, depression, or OCD according to what I have read and seen. My son was diagnosed ADHD at 3 1/2. At that time he was also tested for ASD, but not diagnosed. Within 2 years, he had changed quite a bit, and it then became evident that he also had Aspergers.
•    Anonymous said… Yes, there can be a dual diagnoses. I have a triple one. In our case, it is all evident and true. Asperger's and ADHD. The third one is a attachment/ bonding disorder. All are clearly right on point 100%. Some do not like to diagnose so quick. It is a process that may require a couple of opinions.

Please post your comment below... 

Dealing with Difficult ASD-related Behavior: Critical Tips for Parents

"I need some advice on how to handle behavior problems in my child with ASD, such as how to use the right discipline, dealing with his obsessions, sibling issues, sleep problems, school-related problems, and acting-out behavior in public. Thanks!"

Disciplining kids displaying ASD-related behavior will often require an approach which is somewhat unique to that of "typical" kids. Finding the balance between understanding the needs of a youngster with ASD - and discipline which is age appropriate and situationally necessary - is achievable when applying some simple, yet effective strategies. These strategies can be implemented both at home and in more public settings.

General Behavior Problems—

Traditional discipline may fail to produce the desired results for kids with ASD level 1 ("high-functioning autism"), primarily because they are unable to appreciate the consequences of their actions. Consequently, punitive measures are apt to exacerbate the type of behavior the punishment is intended to reduce, while at the same time giving rise to distress in both the youngster and the mom or dad.

At all times, the emotional and physical well-being of your youngster should take priority. Often this will necessitate removing your youngster from a potentially distressing situation as soon as possible. Consider maintaining a diary of your youngster's behavior with a view to ascertaining patterns or triggers. Recurring behavior may be indicative of a youngster taking some satisfaction in receiving a desired response from peers, moms and dads, or teachers. 
 
 
For example, the youngster may come to understand that hurting another classmate will result in his being removed from class, notwithstanding the associated consequence to his peer. The solution may not be most effectively rooted in punishing the youngster for the behavior, or even attempting to explain the situation from the perspective of their injured peer, but by treating the root cause behind the motivation for the misbehavior (e.g., maybe the ASD youngster can be made more comfortable in class so that he will not want to leave).

One of the means to achieve this may be to focus on the positive. Praise for good behavior, and reinforcement by way of something like a Reward Book, can assist. The use of encouraging verbal cues delivered in a calm tone are likely to elicit more beneficial responses than the harsher verbal warnings that might be effective with "typical" kids. If necessary, when giving directions to stop a type of misbehavior, these should be framed as positives rather than negatives (e.g., rather than telling a youngster to stop hitting his brother with the ruler, the youngster should be directed to put the ruler down).

Obsessive or Fixated Behavior—

Almost all kids go through periods of development where they become engrossed in one subject matter or another, but kids with ASD often display obsessive and repetitive characteristics, which can have significant implications for behavior. For example, if an ASD youngster becomes fixated on reading a particular story each night, she may become distressed if this regime is not adhered to, or if the story is interrupted. Again, the use of a behavior diary can assist in identifying fixations for your youngster. 
 
 
Once a fixation is identified, it is important to set appropriate boundaries for your youngster. Providing a structure within which your youngster can explore the obsession can assist in then keeping the obsession within reasonable limits, without the associated angst which might otherwise arise through such limitations (e.g., tell your youngster that she may watch her favorite cartoon for half an hour after dinner, and make time for that in her routine).

It is appropriate to utilize the obsession to motivate and reward your youngster for good behavior. Always ensure any reward associated with positive behavior is granted immediately to assist the youngster recognizing the nexus between the two.

A particularly useful technique to try to develop social reciprocity is to have your youngster talk for five minutes about a particularly favored topic after he has listened to you talk about an unrelated topic. This serves to help your youngster understand that not everyone shares his enthusiasm for his subject matter.

Bridging the Gap between ASD and Discipline and Other Siblings—

For siblings without autism, the differential - and what at times no doubt appears to be preferential - treatment received by an ASD sibling can give rise to feelings of confusion and frustration. Often, they will fail to understand why their brother or sister apparently seems free to behave as they please without the normal constraints placed on them.

It is important to explain to siblings of ASD kids and encourage open discussion about the disorder itself. Encouragement should extend to the things siblings can do to assist the ASD youngster, and this should be positively reinforced through acknowledgement when it occurs.

Sleep Difficulties—

ASD kids are known for experiencing sleep problems. Kids with the disorder may have lesser sleep requirements, and as such are more likely to become anxious about sleeping, or may find they become anxious when waking during the night or early in the morning.

Combat your youngster's anxiety by making her bedroom a place of safety and comfort. Remove or store items which might be prone to injure your youngster if she decides to wander at night. Include in the behavioral diary a record of your youngster's sleep patterns. It may assist your youngster if you keep a list of her routine (e.g., dinner, bath time, story and bed time) in order to provide structure. Include an image or symbol of her waking in the morning to provide assurance as to what will happen. Social stories have proven to be a particularly successful tactic in decreasing a youngster's anxiety by providing clear instructions on how part of her day is likely to play out.

At School—

Another autistic characteristic is that kids will often experience difficulty during parts of the school day which lack structure. If left to their own devices their difficulties with social interaction and self-management can result in anxiety. The use of a buddy system can assist in providing direction, as can the creation of a timetable for recess and lunch times. These should be raised with teachers and implemented with their assistance.

Explain the concept of free time to your youngster, or consider providing a separate purpose or goal for your youngster during such time (e.g., reading a book, helping to set up paint and brushes for the afternoon tasks, etc.).

In Public—

Kids on the spectrum can become overwhelmed to the point of distress by even a short visit in public. The result is that many moms and dads with ASD kids simply seek to avoid (as much as possible) situations where their youngster is exposed to the public. While expedient, it may not offer the best long-term solution to your youngster, and there are strategies to assist with outings.

Consider providing your youngster with an iPod, or have the radio on in the car to block out other sounds and stimuli. Prepare a social story or list explaining to the youngster a trip to the shops, doctor, etc. Be sure to include on the list your return home. Consider giving your youngster a task to complete during the trip, or having him assist you. At all times, maintaining consistency is a key concern. It pays to ensure that others involved in your youngster's care are familiar with your strategies and techniques and are able to apply them.

Lastly, don't hesitate to seek support networks for parents with ASD kids, and take advantage of the wealth of knowledge those who have dealt with the disorder before you have developed. The assistance you can gain from these and other resources can assist you in developing important strategies to deal with problems in a manner most beneficial to your youngster.