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Causes of School-Related Anxiety in Kids on the Autism Spectrum

It's common for ASD level 1 (high functioning autistic) children of all ages to experience school anxiety and school-related stress.

This is often most apparent at the end of summer when school is about to start again, but it can occur year-round. Social, academic and scheduling factors play a major role, as do hidden environmental stressors.

Below are some of the anxiety-related factors that both moms and dads and teachers should consider when dealing with ASD children:

1. Many schools now have anti-bullying programs and policies. Though bullying does still happen at many schools, even those with these policies, help is generally more easily accessible than it was years ago. The bad news is that bullying has gone high-tech. Many children use the Internet, cell phones and other media devices to bully other children, and this type of bullying often gets very aggressive. 

One reason is that bullies can be anonymous and enlist other bullies to make their target miserable. Another reason is that they don't have to face their targets, so it's easier to shed any empathy that they may otherwise feel. There are ways to combat cyber-bullying, but many moms and dads aren't aware of them – and many bullied Aspies feel too overwhelmed to deal with the situation.


2. Most ASD children want to have friends but may not have the social skills to acquire them. Concerns about not having enough friends, not being in the same class as friends, not being able to keep up with friends in one particular area or another, interpersonal conflicts, and peer pressure are a few of the very common ways children on the autism spectrum can be stressed by their social lives (or lack of a social life) at school.

3. Children are being assigned a heavier homework load than in past years – and that extra work can add to a busy schedule and take a toll.

4. Due in part to the busyness of kids’ lives and the hectic schedules of most moms and dads, the sit-down family dinner has become the exception rather than the rule in many households. While there are other ways to connect as a family, many families find that they’re too busy to spend time together and have both the important discussions and the casual day recaps that can be so helpful for Aspies in dealing with the issues they face. Due to a lack of available family time, many moms and dads aren't as connected to their children, or knowledgeable about the issues they face.

5. Not having necessary supplies can be a very stressful experience for an autistic youngster. If the youngster doesn't have an adequate lunch, didn't bring his signed permission slip, or doesn't have a red shirt to wear on "Red Shirt Day," for example, he may experience significant stress.

6. You may already know that there are different styles of learning -- some learn better by listening, others retain information more efficiently if they see the information written out, and still others prefer learning by doing. If there's a mismatch in learning style and classroom, or if your youngster has a learning disability (especially an undiscovered one), this can obviously lead to a stressful academic experience.

7. Noisy classrooms and hallways, noise pollution from nearby airports, heavy traffic, and other sources have been shown to cause stress that impacts ASD kids’ performance in school.

8. Many Aspies aren't getting enough sleep to function well each day. As schedules get busier, even young children are finding themselves habitually sleep-deprived. This can affect health and cognitive functioning, both of which impact school performance. Operating under a sleep deficit doesn’t just mean sleepiness, it can also lead to poor cognitive functioning, lack of coordination, moodiness, and other negative effects.

9. In an effort to give their autistic children an edge, or to provide the best possible developmental experiences, some moms and dads are enrolling their children in too many extra-curricular activities. As these children become teens, school extracurricular activities become much more demanding.


10. With the overabundance of convenience food available these days and the time constraints many experience, the average Aspie's diet has more sugar and less nutritious content than is recommended. This can lead to mood swings, lack of energy, and other negative effects that impact stress levels.

11. Most Aspies experience some level of stress or anxiety in social situations they encounter in school. While some of these issues provide important opportunities for growth, they must be handled with care and can cause anxiety that must be dealt with.

12. A good experience with a caring teacher can cause a lasting impression on a youngster's life – but so can a bad experience! While most teachers do their best to provide “special needs kids” with a positive educational experience, some Aspies are better suited for certain teaching styles and classroom types than others. If there's a mismatch between student and teacher, the youngster can form lasting negative feelings about school or his own abilities.

13. Many of us experience test anxiety, regardless of whether or not we're prepared for exams. Unfortunately, some studies show that greater levels of test anxiety can actually hinder performance on exams. Reducing test anxiety can actually improve scores. Certain aspects of an ASD youngster's environment can also cause stress that can spill over and affect school performance.

14. There's a lot of pressure for children to learn more and more and at younger ages than in past generations. For example, while a few decades ago kindergarten was a time for learning letters, numbers, and basics, most kindergarteners today are expected to read. With test scores being heavily weighted and publicly known, schools and teachers are under great pressure to produce high test scores; that pressure can be passed on to children.

15. Just as it can be stressful to handle a heavy and challenging workload, some kids on the spectrum can experience stress from work that isn't difficult enough. They can respond by acting-out or tuning-out in class, which leads to poor performance, masks the root of the problem, and perpetuates the difficulties.

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

High Pain-Tolerance in Children with Autism Spectrum Disorder

It is not uncommon for ASD youngsters to experience great pain and discomfort that goes unreported, unnoticed by others, undiagnosed, and untreated. Enduring pain and allowing it to become chronic is extremely detrimental to your youngster's ability to function, grow, and learn. Untreated pain and discomfort will also seriously affect your child's behavior and ability to communicate with others.

Of all the “meltdown triggers” that drive behaviors, experiencing pain and discomfort is extremely significant. This is because pain affects behavior. Think of the last time your youngster was sick and feeling significant pain or discomfort (e.g., flu symptoms, migraine, menstrual cramps, pulled muscle, etc.). Now, think of how being in such pain manifested in his/her behavior. Perhaps he/she:
  • Felt especially vulnerable
  • Just wanted to be left alone
  • Just wanted to crawl under the covers and stay there
  • Lashed out or snapped at family members
  • Lashed out or snapped when anyone made a demand of him/her
  • Was especially hypersensitive to light or sound

What if the pain and discomfort is not treated and is allowed to persist due to a high pain tolerance?

Revisit the list above and consider how your child’s behavior might intensify the longer he had to endure the pain. Not only would he feel lousy, he would also feel disoriented and distracted. His attention would be focused on trying his best to cope and manage the pain that threatens to overwhelm him. Slowly but surely, any – or all – of the following could occur:
  • he might stop caring about his appearance
  • his ability to function, care for yourself, or interact with others would be greatly reduced
  • his mental health would be affected, eroded, and over time, seriously impaired
  • his self-esteem would suffer
  • the culmination of feeling physical pain would converge with mental anguish, leaving him weak and vulnerable

One prevalent form of pain in kids on the autism spectrum occurs with allergies. The challenge is that many moms and dads do not recognize this and see their youngster's symptoms in isolation, if at all (e.g., the youngster may frequently experience ear blockages and ear infections, sometimes from a very young age). 


Perhaps the youngster manifested outwardly visual symptoms (e.g., red, sore, pussy ears that drained spontaneously). The youngster may have been treated with antibiotics or had tubes in her ears to relieve pressure. More often than not, the ear problems were one symptom within a cluster of other symptoms, indicative of allergies.

In addition to ear blockages and infections, the Autistic youngster may also manifest symptoms of an allergy, such as:
  • Congestion and runny nose
  • Coughing and sneezing
  • Headaches and migraines
  • Red, itchy, or runny eyes
  • Sinus pressure over or under eyes
  • Sore throat
  • Swollen glands

You might have discovered that several of these symptoms manifest together at the same times of the year. The allergens could be absolutely anything — from one indicator (e.g., seasonal pollen) to an exhaustive collection of many known indicators. While you may have been treating one or two symptoms, you may not have been addressing the bigger picture (i.e., chronic allergies).

Treatment is available to relieve many of the physical side effects of severe allergies, but testing is necessary to determine the allergen type and degree of severity. This may be problematic for many kids on the spectrum, especially if they have had unpleasant experiences with doctors who were not as patient or sensitive as they should have been.

Some of the testing and treatment may involve drawing blood or receiving steroid shots, which may be an overwhelming experience (and perhaps not worth the potential trauma). Another type of testing is non-intrusive and involves the child holding various physical examples of allergens to ascertain a reaction. It is also possible that standard, over-the-counter medications may work to contain some or all symptoms of the allergies — at least until the child or teen can determine if she wishes to pursue other forms of obtaining relief.

Another prevalent factor that drives pain and discomfort in ASD kids is the gastrointestinal issues (e.g., severe gas and cramping, bloating, constipation, impaction, diarrhea, etc.). A number of such kids have an inability to properly digest dairy and wheat-based food products (among others), such that the enzymes from these foods “leak” through the gut and into the bloodstream, potentially creating an adverse reaction described by some as an “opiate” effect. In clinical trials, the dairy products are referred to as “casein,” and the wheat-based foods are referred to as “gluten.”

Moms and dads may find themselves frustrated with a youngster who seems “inappropriately” or embarrassingly gassy or who seems to have bowel complaints. Again, the youngster is not being deliberately difficult; there is a legitimate issue that is driving pain and discomfort.

As with pursuing the treatment of allergies, there are options that range from restrictive to less intrusive forms of treatment. In some instances, bacteria of the lower gastrointestinal tract may be responsible for creating these issues. This can be an excruciatingly painful experience that may cause a youngster to double over in pain. 

If the youngster is unaware of the root of the problem or doesn't know how to describe the pain in the moment, his “behavior” may be misinterpreted instead of correctly identified as a communication. Consult with your pediatrician to determine the appropriate treatment to get rid of all traces of the bacteria.


The procedures to determine the cause of the gastrointestinal tract problems may be very physically intrusive. You may want to explore less invasive methods of intervention as an alternative if the youngster has not had a good history with medical practitioners. These may include:
  • Avoiding foods with dyes or preservatives
  • Considering soy and other substitute foods, perhaps for a select time frame, to note any cause and effect
  • Cutting back on red-meat proteins in favor of chicken, fish, or other food options
  • Increasing consumption of natural food fiber found in fruits and vegetables
  • Increasing fluid intake, especially water, which may prove helpful as well
  • Promoting massage and exercise
  • Pursuing a diet free of dairy and wheat, in partnership with the youngster and in consultation with a dietician or nutritionist
  • Using any over-the-counter products designed to aid gas relief or alleviate bowel distress, like fiber-based additives

Some gastrointestinal problems may be compounded by the youngster's fears and anxieties around toileting. Children on the spectrum tend to be careful observers. Most will attempt toileting — especially urinating — in their own way and in their own time, just at a time later than what might be considered developmentally appropriate. Still others may appear to deliberately wet or soil themselves. But understand that your youngster is not deliberately being insubordinate. He really is struggling and feeling just as frustrated as you.

Here are some tips that may help clarify your understanding of toileting issues in the youngster:
  • If the youngster is not feeling safe and comfortable and in control, withholding body waste is one way of independently attempting to gain control.
  • Your youngster may be frightened by the toilet, believing that he may fall in and get sucked down.
  • Your youngster may be in a “perfectionism” mode, unwilling to admit his need to use the toilet when asked, or embarrassed to confess the need.
  • Your youngster may be overwhelmed by the loud roar of a flushing toilet.
  • Your youngster may not be connected enough with his body to consistently receive the physical “signals” or pressure indicating the need to evacuate waste.
  • Your youngster may panic, believing that in making a bowel movement, he is shedding a vital, living piece of his body.

To counteract these and other issues, it will be important to deconstruct the whole toileting process for your youngster using very basic, visual information. Explain the process of how and why the body rids itself of waste. Use your own visuals (e.g., graphics) to explain the human digestive system and name the internal parts of the body. Reinforce with your youngster that the process of eliminating waste from the body is natural. Also reinforce that using the toilet is a private matter. It is not to be discussed freely in public. It should only be discussed with close, trusted individuals (list them in writing), usually if there is cause for concern like constipation, impaction, diarrhea, etc.

Some of these kids will want specific assurances about exactly what happens to their stool once it gets flushed away (e.g., “where does it go?” … “what becomes of it?”). You may need to research this yourself, or look it up on the Internet with your youngster. If you are uncertain if your youngster experiences the sensations indicating the need to use the bathroom, first ask him about it. Talk about the ways in which you know your body gives you the appropriate signals, and plan daily, gentle exercises designed to better connect your youngster with his body (e.g., yoga, breathing, stretching exercises, etc.).

There may be some adaptations you can make in giving your youngster control in toileting (e.g., adjusting the water pressure to avoid a rushing roar when the toilet is flushed, partnering with your youngster to select a new toilet seat that is more comfortable and makes the toilet opening less imposing).

Keeping a sticker or piece of tape handy when in public will empower your youngster's encounters with automatic flush toilets, which can create great anxiety for being so unpredictable. Simply have your youngster cover the toilet sensor with the adhesive, and remove it when ready. The toilet will be disabled until the sticker is removed.


As your youngster grows into an adult, she should be able to identify and advocate for her own relief from pain. As with toileting, it will be useful to visually explain how the brain and body usually work together to send signals indicating pain. Sometimes the signals are accompanied by visuals that help reinforce that something is wrong (e.g., bleeding, a cut or blister). Other times, the signals may be exclusively inside the body and unseen, just felt. The Internet or your local library should be a resource in accessing images, books, or videos that describe these physiological processes.

There are some kids with ASD who are inconsistent in reporting pain – if they report it at all. Here’s why:
  • As with toileting, your youngster may not have a nervous system he feels fully connected with, such that the pain is delayed or not “registering” properly.
  • Being inherently gentle and exquisitely sensitive, your youngster may have been severely traumatized by experiences with doctors and nurses so that he considers enduring the pain the better option.
  • Your youngster may not realize that what he's feeling in the moment is anything any different from what anyone else feels.
  • Your youngster may not understand that there exists an unwritten social expectation that all people report pain and discomfort in order to gain relief.

In addition to educating your youngster about how the body works when communicating pain, it will also be important to partner with your youngster in gaining self-awareness and control leading to lifelong self-advocacy. This means reinforcing that it is good and desirable to identify and report one's own pain. The message needs to be loud and clear: “It is not okay to live with chronic pain.” Also, it will help considerably in relieving your youngster’s anxiety if you endeavor to demystify the entire concept of going to the doctor in advance of an appointment. You may do this by partnering with your youngster to consider doing the following:
  1. Arrange to get as many specifics about the appointment as possible, including approximate wait time and details of any procedures, along with literature and other visuals.
  2. Assign your youngster the responsibility of reading you driving directions to and from the office location, noting street names and landmarks.
  3. Because of downtime while waiting, suggest your youngster bring something to read or work on, possibly to share with the doctor as well.
  4. Before making the trip, partner with your youngster to develop a list of questions to ask the doctor, nurse, or receptionist. If there's the opportunity to do this, allow your youngster to take the lead in gleaning the information desired.
  5. Discuss flexibility of time frames with your youngster, and empower him to keep track of the time during the actual appointment.
  6. Gain clear information about the tentative sequence of events in order to visually list these out with your youngster (he can bring this list with him on appointment day).
  7. If at all possible, arrange to meet the doctor, the nurse practitioner, and — at the least — the receptionist. Again, provide the opportunity for your youngster to take pictures.
  8. Once at the office, empower your youngster by allowing him to take photographs inside and out. Review these later at home (where your youngster feels most comfortable), eliciting details from him.
  9. Schedule a pleasurable activity for your youngster to follow the appointment. Ensure that the activity occurs regardless of how well you think your youngster does or if he “earned” it.
  10. Suggest that your youngster photograph a typical private room, being remindful that, next visit, you may not get that exact room but one very much like it.
  11. With your youngster, schedule a time to drive to the doctor's office before the appointment day.

This is a lot of prep work and a significant investment of time, but in the long run, this investment of time up front will go a long way in supporting your youngster to feel safe and comfortable and in control. Empowering her to take the lead during this process promotes her ownership and sense of self-advocacy.



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

Dealing with Children on the Autism Spectrum Who Refuse to Go to School

Has your ASD (high functioning autistic) child given you some indication that he is nervous about starting back to school?  He may have even said, “I’m not going!!!

What youngster hasn't dreaded September, the end of summer and the return to school – but for many ASD students, the prospect of school produces a level of fear so intense that it is immobilizing, resulting in what's known as school-refusal behavior. Some children with autism spectrum disorder have been known to be absent for weeks or months. 

Some may cry or scream for hours every morning in an effort to resist leaving home. Others may hide out in the nurse's office. Some children who miss school are simply truant (i.e., they'd just rather be doing something else), but sometimes there are genuine reasons to fear school (e.g., bullying, teasing).

Anywhere from 5% to 28% of kids will exhibit some degree of school-refusal behavior at some point, including truancy. For children with anxiety-fueled school refusal, the fear is real and can take time to overcome. Families may struggle for months to help an autistic youngster get back into the classroom. Ignoring the problem or failing to deal with it completely can lead to more-serious problems later on. Individuals who experience school-refusal behavior and anxiety disorders in childhood may face serious ramifications in adulthood.

Psychologists say and studies show the following:
  • Alcohol, drug use: A study of kids ages 9 to 13 with an anxiety disorder showed that those who still had the disorder seven years after treatment drank alcohol more often and were more likely to use marijuana than those whose disorders had resolved.
  • Depression: Teens and young adults ages 14 to 24 that had social anxiety were almost three times as likely to develop depression later on than those without the anxiety disorder.
  • Different life choices: Psychologists say they've seen young people with persistent anxiety make fear-fueled choices that can have long term effects, such as selecting a less-rigorous college or a less challenging career.
  • Psychiatric treatment: A study of school-refusing kids showed that about 20 to 29 years later they received more psychiatric treatment than the general population.

School refusal affects the entire family. If a child doesn't go to school, it may be hard for a parent to keep her job. Children are at heightened risk when starting a new school, and especially when entering middle school. It is the perfect storm with the onset of puberty, a huge transition and a chaotic academic environment.

Well-meaning moms and dads can make things worse by allowing an anxious youngster to miss school. Such an accommodation sends the message that school is too scary for the youngster to handle and the fear is justified. Overprotective moms and dads rush in way too quickly to shield their Aspie from any experience that creates distress.

Untreated, a youngster on the spectrum with school-refusal behavior is likely to fall behind academically, which can then lead to more anxiety. And there may be longer-term consequences. A 1997 study followed 35 students (ages 7-12) treated for school refusal. Twenty years later they were found to have had more psychiatric treatment and to have lived with their parents more often than a comparison group.

Some ASD teens with unresolved anxiety may go on to self-medicate with alcohol and drugs. A 2004 study followed 9- to 13-year-olds who were treated for an anxiety disorder. Seven years after treatment, those who still had the disorder drank alcohol more days per month and were more likely to use marijuana than those whose disorder had resolved.

Children with school-refusal behavior may have (a) separation anxiety (i.e., a fear of being away from their moms and dads), (b) a social phobia (i.e., an inordinate fear of being judged), or (c) a fear of being called-on in class or being teased. A specific phobia (e.g., riding the bus, walking past a dog, being out in a storm, etc.) may be present as well. Other kids are depressed, in some cases unable to get out of bed.

Because many children complain of headaches, stomachaches or other physical symptoms, it can be difficult to tell whether anxiety, or a physical illness, is to blame. (Note: Anxiety-fueled ailments tend to disappear magically on weekends.)

Autistic kids with school refusal may complain of physical symptoms shortly before it is time to leave for school or repeatedly ask to visit the school nurse. If the youngster is allowed to stay home, the symptoms quickly disappear, only to reappear the next morning. In some cases, the child  may refuse to leave the house. Common physical symptoms include headaches, stomachaches, nausea, or diarrhea. Tantrums, inflexibility, separation anxiety, avoidance, and defiance may show up, too.

Starting school, moving, and other stressful life events may trigger the onset of school refusal. Other reasons include the youngster’s fear that something will happen to a parent after he is in school, fear that she won’t do well in school, or fear of another student. Often a symptom of a deeper problem, anxiety-based school refusal affects 2 to 5 percent of school-age kids. It commonly takes place between the ages of five and six and between ten and eleven, and at times of transition, such as entering middle and high school. Kids who suffer from school refusal tend to have average or above-average intelligence. But they may develop serious educational or social problems if their fears and anxiety keep them away from school and friends for any length of time.

What Can Parents Do?

The most important thing a mother or father can do is obtain a comprehensive evaluation from a mental health professional. That evaluation will reveal the reasons behind the school refusal and can help determine what kind of treatment will be best. Your youngster’s pediatrician should be able to recommend a mental health professional in your area who works with kids on the spectrum.

The following tips will help you and your Aspie develop coping strategies for school anxieties and other stressful situations:
  • Arrange an informal meeting with your youngster’s teacher away from the classroom.
  • Emphasize the positive aspects of going to school: being with friends, learning a favorite subject, and playing at recess.
  • Encourage hobbies and interests. Fun is relaxation, and hobbies are good distractions that help build self-confidence.
  • Expose kids to school in small degrees, increasing exposure slowly over time. Eventually this will help them realize there is nothing to fear and that nothing bad will happen.
  • Help your Aspie establish a support system. A variety of people should be in your youngster’s life—other kids as well as family members or educators who are willing to talk with your youngster should the occasion arise.
  • Learn about your Aspie’s anxiety disorder and treatment options. For more information about school refusal and kid’s anxiety disorders, type "anxiety" and/or "school problems" in the search box at the top of this page.
  • Meet with the school guidance counselor for extra support and direction.
  • Talk with your Aspie about feelings and fears, which helps reduce them.
  • Try self-help methods with your Aspie. In addition to a therapist’s recommendations, a good self-help book will provide relaxation techniques. Be open to new ideas so that your youngster is, too.

Treatment—

Cognitive behavioral therapy (CBT), in which clients learn to change negative thoughts and behavior, is the main treatment for school-refusal behavior and the anxiety disorders that often underlie it. The primary technique is exposure therapy, where children gradually face and master their fears.

CBT is very effective. Recent studies have shown that about half to 70% of children with anxiety disorders treated with CBT will have a significant improvement in function and decrease in their symptoms. Some specialized school-refusal clinics have success rates that are even higher.

Antidepressants such as Zoloft (sertraline) or Prozac (fluoxetine) are often prescribed for kids with anxiety disorders, although their use in kids is controversial.

Psychologists stress the importance of seeking treatment quickly—after as little as two weeks of missed school. The longer they've been out of school, the poorer the prognosis.

ASD: Tantrums, Rage, and Meltdowns - What Parents Need to Know

Question

My eldest boy J___ who is now 5-years-old was diagnosed with ASD (level 1) last July. We did 6 months of intense therapy with a child psychologist and a speech therapist before we moved over to Ghana. J___ has settled in well. He has adjusted to school very well and the teachers who are also expats from England are also dealing with him extremely well.

My current issue is his anger. At the moment if the situations are not done exactly his way he has a meltdown. Symptoms are: Extreme ear piercing screaming, intense crying, to falling down on the floor saying he is going to die. I have tried to tell him to breathe but his meltdown is so intense that his body just can't listen to words. I then have asked him to go to his room to calm down. He sometimes (very rarely) throws things across the room, but does not physically hurt anyone. As I have two younger boys (ages 1 and 3) I still need to be aware of their safety. I then managed to put J___ in his room with the help of a nanny. He throws all blankets off the bed (which doesn't bother me) and then hides under them. Today I waited 10 minutes then went upstairs to talk to him, but he then started again with the extreme crying and screaming at me. It took him over an hour to calm down fully. The situation arose as the nanny and I were helping him to make muffins and the nanny put a spoonful of the mixture into the muffin tin.

I am requesting your help on ways to calm him down in a manner that is acceptable. He is getting too old to be put in the "thinking corner/naughty corner" and I am a petite person so I'm not going to physically put him there. I am finding his resistance at the moment is a lot with me and his father.

I have structures in place by visual laminated pictures of how the morning is run and the structure before bed. This works fine, but like I said when things aren't done exactly his way, he can have an outburst in a flash. Please give me some strategies on how I can better manage these meltdowns.

FYI - he was diagnosed on the border on the CARS model. I have found a qualified speech therapist who is from England which we go to once a week (but as it is summer break we don't go back to August) to assist with his pragmatic language.


Answer

Problems related to stress and anxiety are common in kids with ASD (high-functioning autism). In fact, this combination has been shown to be one of the most frequently observed comorbid symptoms in these children. They are often triggered by or result directly from environmental stressors, such as:
  • a sense of loss of control
  • an inherent emotional vulnerability
  • difficulty in predicting outcomes
  • having to face challenging social situations with inadequate social awareness
  • misperception of social events
  • rigidity in moral judgment that results from a concrete sense of social justice violations.
  • social problem-solving skills
  • social understanding

The stress experienced by kids with ASD may manifest as withdrawal, reliance on obsessions related to circumscribed interests or unhelpful rumination of thoughts, inattention, and hyperactivity, although it may also trigger aggressive or oppositional defiant behavior, often captured by therapists as tantrums, rage, and “meltdowns”.
 

Educators, therapists, and moms/dads often report that kids on the spectrum exhibit a sudden onset of aggressive or oppositional behavior. This escalating sequence is similar to what has been described in children on the spectrum, and seems to follow a three-stage cycle as described below. Although non-autistic kids may recognize and react to the potential for behavioral outbursts early in the cycle, many kids and teenagers with the disorder often endure the entire cycle, unaware that they are under stress (i.e., they do not perceive themselves as having problems of conduct, aggression, hyperactivity, withdrawal, etc.).

Because of the combination of innate stress and anxiety and the difficulty of kids with ASD to understand how they feel, it is important that those who work and live with them understand the cycle of tantrums, rage, and meltdowns, and the interventions that can be used to promote self-calming, self-management, and self-awareness as a means of preventing or decreasing the severity of behavior problems.

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The Cycle of Meltdowns

Meltdowns typically occur in three stages that can be of variable length. These stages are (1) the “acting-in” stage, (2) the “acting-out” stage, and (3) the recuperation stage.

The “Acting-In” Stage

The “acting-in” stage is the initial stage of a tantrum, rage, or meltdown. During this stage, kids and teenagers on the autism spectrum exhibit specific behavior changes that may not seem to be related directly to a meltdown. The behaviors may seem minor. That is, children with ASD may clear their throats, lower their voices, tense their muscles, tap their foot, grimace, or otherwise indicate general discontent. Furthermore, somatic complaints also may occur during the “acting-in” stage. Kids also may engage in behaviors that are more obvious, including emotionally or physically withdrawing, or verbally or physically affecting someone else. For example, the youngster may challenge the classroom structure or authority by attempting to engage in a power struggle.

During this stage, it is imperative that a mother/father or educator intervene without becoming part of a struggle. The following interventions can be effective in stopping the cycle of tantrums, rage, and meltdowns – and they are invaluable in that they can help the youngster regain control with minimal adult support:

1. Intervention #1 involves displaying a chart or visual schedule of expectations and events, which can provide security to kids and teenagers with ASD who typically need predictability. This technique also can be used as advance preparation for a change in routine. Informing kids of schedule changes can prevent anxiety and reduce the likelihood of tantrums, rage, and meltdowns (e.g., the youngster who is signaling frustration by tapping his foot may be directed to his schedule to make him aware that after he completes two more problems he gets to work on a topic of special interest with a peer). While running errands, moms and dads can use support from routine by alerting the youngster in the “acting-in” stage that their next stop will be at a store the youngster enjoys.

2. Intervention #2 involves helping the youngster to focus on something other than the task or activity that seems to be upsetting. One type of redirection that often works well when the source of the behavior is a lack of understanding is telling the youngster that he can “cartoon” the situation to figure out what to do. Sometimes cartooning can be postponed briefly. At other times, the youngster may need to cartoon immediately.

3. Intervention #3 involves making the autistic child’s school environment as stress-free as possible by providing him/her with a “home-base.”. A home-base is a place in the school where the child can “escape.” The home-base should be quiet with few visual or activity distractions, and activities should be selected carefully to ensure that they are calming rather than alerting. In school, resource rooms or counselors' offices can serve as a home-base. The structure of the room supersedes its location. At home, the home-base may be the youngster's room or an isolated area in the house. Regardless of its location, however, it is essential that the home-base is viewed as a positive environment. Home-base is not “timeout” or an escape from classroom tasks or chores. The youngster takes class work to home-base, and at home, chores are completed after a brief respite in the home-base. Home-base may be used at times other than during the “acting-in” stage (e.g., at the beginning of the day, a home base can serve to preview the day's schedule, introduce changes in the typical routine, and ensure that the youngster's materials are organized or prime for specific subjects). At other times, home-base can be used to help the youngster gain control after a meltdown.

4. Intervention #4 involves paying attention to cues from the child. When the youngster with begins to exhibit a precursor behavior (e.g., throat clearing, pacing), the educator uses a nonverbal signal to let the youngster know that she is aware of the situation (e.g., the educator can place herself in a position where eye contact with the youngster can be achieved, or an agreed-upon “secret” signal, such as tapping on a desk, may be used to alert the youngster that he is under stress). A “signal” may be followed by a stress relief strategy (e.g., squeezing a stress ball). In the home or community, moms and dads may develop a signal (i.e., a slight hand movement) that the mother/father uses with their youngster is in the “acting-in” stage. 
 

5. Intervention #5 involves removing a youngster, in a non-punitive fashion, from the environment in which he is experiencing difficulty. At school, the youngster may be sent on an errand. At home, the youngster may be asked to retrieve an object for a mother/father. During this time the youngster has an opportunity to regain a sense of calm. When he returns, the problem has typically diminished in magnitude and the grown-up is on hand for support, if needed.

6. Intervention #6 is a strategy where the educator moves near the youngster who is engaged in the target behavior. Moms/dads and teachers move near the autistic youngster. Often something as simple as standing next to the youngster is calming. This can easily be accomplished without interrupting an ongoing activity (e.g., the educator who circulates through the classroom during a lesson).

7. Intervention #7 is a technique in which the mother/father or educator merely walks with the youngster without talking. Silence on the part of the grown-up is important, because a youngster with ASD in the “acting-in” stage will likely react emotionally to any adult statement, misinterpreting it or rephrasing it beyond recognition. On this walk the youngster can say whatever he wishes without fear of discipline or reprimand. In the meantime, the grown-up should be calm, show as little reaction as possible, and never be confrontational.

8. Intervention #8 is a technique that is effective when the youngster is in the midst of the “acting-in” stage because of a difficult task, and the mother/father or educator thinks that the youngster can complete the activity with support. The mother/father or educator offers a brief acknowledgement that supports the verbalizations of the youngster and helps him complete his task. For instance, when working on a math problem the youngster begins to say, “This is too hard.” Knowing the youngster can complete the problem, the educator refocuses the youngster's attention by saying, “Yes, the problem is difficult. Let's start with number one.” This brief direction and support may prevent the youngster from moving past the “acting-in” stage.

When selecting an intervention during the “acting-in” stage, it is important to know the youngster, as the wrong technique can escalate rather than deescalate a behavior problem. Further, although interventions at this stage do not require extensive time, it is advisable that grown-ups understand the events that precipitate the target behaviors so that they can (1) be ready to intervene early, or (2) teach kids and teenagers strategies to maintain behavior control during these times. Interventions at this stage are merely calming. They do not teach kids to recognize their own frustration or provide a means of handling it. Techniques to accomplish these goals are discussed later.

The “Acting-Out” Stage

If behavior is not diffused during the “acting-in” stage, the youngster or adolescent may move to the “acting-out” stage. At this point, the youngster is dis-inhibited and acts impulsively, emotionally, and sometimes explosively. These behaviors may be externalized (i.e., screaming, biting, hitting, kicking, destroying property, or self-injury) or internalized (i.e., withdrawal). Meltdowns are not purposeful, and once the “acting-out” stage begins, most often it must run its course.

During this stage, emphasis should be placed on youngster, peer, and adult safety, and protection of school, home, or personal property. The best way to cope with a tantrum, rage, or meltdown is to get the youngster to home base. As mentioned, this room is not viewed as a reward or disciplinary room, but is seen as a place where the youngster can regain self-control.

Of importance here is helping the individual with ASD regain control and preserve dignity. To that end, grown-ups should have developed plans for (1) obtaining assistance from educators, such as a crisis educator or principal, (2) removing other kids from the area, or (3) providing therapeutic restraint, if necessary. 

The Recuperation Stage

Following a meltdown, the youngster has contrite feelings and often cannot fully remember what occurred during the “acting-out” stage. Some may become sullen, withdraw, or deny that inappropriate behavior occurred; others are so physically exhausted that they need to sleep.

It is imperative that interventions are implemented at a time when the youngster can accept them and in a manner the youngster can understand and accept. Otherwise, the intervention may simply resume the cycle in a more accelerated pattern, leading more quickly to the “acting-out” stage. During the recuperation stage, kids often are not ready to learn. Thus, it is important that grown-ups work with them to help them once again become a part of the routine. This is often best accomplished by directing the youth to a highly motivating task that can be easily accomplished, such as activity related to a special interest.

Preventing Tantrums, Rage, and Meltdowns

Kids and teenagers with autism spectrum disorder generally do not want to engage in meltdowns. Rather, the “acting-out” cycle is the only way they know of expressing stress, coping with problems, and a host of other emotions to which they see no other solution. Most want to learn methods to manage their behavior, including calming themselves in the face of problems and increasing self-awareness of their emotions. The best intervention for tantrums, rage, and meltdowns is prevention. Prevention occurs best as a multifaceted approach consisting of instruction in (1) strategies that increase social understanding and problem solving, (2) techniques that facilitate self-understanding, and (3) methods of self-calming.
 

Increasing Social Understanding and Problem Solving

Enhancement of social understanding includes providing direct assistance. Although instructional strategies are beneficial, it is almost impossible to teach all the social skills that are needed in day-to-day life. Instead, these skills often are taught in an interpretive manner after the youngster has engaged in an unsuccessful or otherwise problematic encounter. Interpretation skills are used in recognition that, no matter how well developed the skills of a person with ASD, situations will arise that he or she does not understand. As a result, someone in the person's environment must serve as a social management interpreter.

The following interpretative strategies can help turn seemingly random actions into meaningful interactions for young people on the spectrum:

1. Analyzing a social skills problem is a good interpretative strategy. Following a social error, the youngster who committed the error works with an adult to (1) identify the error, (2) determine who was harmed by the error, (3) decide how to correct the error, and (4) develop a plan to prevent the error from occurring again. A social skills analysis is not “punishment.” Rather, it is a supportive and constructive problem-solving strategy. The analyzing process is particularly effective in enabling the youngster to see the cause/effect relationship between her social behavior and the reactions of others in her environment. The success of the strategy lies in its structure of practice, immediate feedback, and positive reinforcement. Every grown-up with whom the youngster with ASD has regular contact, such as moms and dads, educators, and therapists, should know how to do social skills analysis fostering skill acquisition and generalization. Originally designed to be verbally based, the strategy has been modified to include a visual format to enhance child learning.

2. Visual symbols such as “cartooning” have been found to enhance the processing abilities of persons in the autism spectrum, to enhance their understanding of the environment, and to reduce tantrums, rage, and meltdowns. One type of visual support is cartooning. Used as a generic term, this technique has been implemented by speech and language pathologists for many years to enhance understanding in their clients. Cartoon figures play an integral role in several intervention techniques: pragmaticism, mind-reading, and comic strip conversations. Cartooning techniques, such as comic strip conversations, allow the youngster to analyze and understand the range of messages and meanings that are a natural part of conversation and play. Many kids with ASD are confused and upset by teasing or sarcasm. The speech and thought bubble as well as choice of colors can illustrate the hidden messages.

Conclusion—

Although many kids and teenagers on the spectrum exhibit anxiety that may lead to challenging behaviors, stress and subsequent behaviors should be viewed as an integral part of the disorder. As such, it is important to understand the cycle of behaviors to prevent seemingly minor events from escalating. Although understanding the cycle of tantrums, rage, and meltdowns is important, behavior changes will not occur unless the function of the behavior is understood and the youngster is provided instruction and support in using (1) strategies that increase social understanding and problem solving, (2) techniques that facilitate self-understanding, and (3) methods of self-calming.

Children experiencing stress may react by having a tantrum, rage, or meltdown. Behaviors do not occur in isolation or randomly; they are associated most often with a reason or cause. The youngster who engages in an inappropriate behavior is attempting to communicate. Before selecting an intervention to be used during the “acting-out” cycle or to prevent the cycle from occurring, it is important to understand the function or role the target behavior plays.

More resources for parents of children and teens with High-Functioning Autism and Asperger's:

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

==> Parenting System that Significantly Reduces Defiant Behavior in Teens with Aspergers and High-Functioning Autism

==> Launching Adult Children with Asperger's and High-Functioning Autism: Guide for Parents Who Want to Promote Self-Reliance

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

==> Parenting Children and Teens with High-Functioning Autism: Comprehensive Handbook

==> Unraveling The Mystery Behind Asperger's and High-Functioning Autism: Audio Book

==> Parenting System that Reduces Problematic Behavior in Children with Asperger's and High-Functioning Autism


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Behavior Modification Plan for Your Child with Autism Spectrum Disorder [level 1]

"What types of behavior change methods -if any- can parents use at home instead of putting their child in a formal treatment program?"
 
Let's look at a few ideas...
 
A short-term behavior modification plan can break through a cycle of bad behavior in your child with ASD level 1 [Aspergers or High-Functioning Autism]. Think of it as a learning tool to help him or her move forward to a new level of social development. 
 
Four to six weeks on the plan is usually enough to change one or two specific behavior problems. At the very least, your youngster will have a clear understanding of your expectations for his behavior, even if he is not yet able to consistently maintain the desirable behavior.

Chips or Charts?

A chart system is useful when chores or homework are the issues. Use daily stars or stickers for completed tasks with weekly rewards for good performance. Weekend privileges or rewards are clearly dependent on consistently responsible behavior through the week. Charts make sense to ASD children since they are so visually-oriented, and they take pride in a full page of stickers showing their good behavior. Use your word processing software to make a chart, or find some on the Internet (just do a Google search for “behavior charts”).
 

A poker chip system is easy and inexpensive. All you need is a box of poker chips and a package of the new disposable food containers. Introduce the plan in a positive way when you show your youngster the chips and let him personalize his box with markers and stickers. The poker chip system is effective because it encourages immediate rewards for positive behavior.

Implementing the Behavior Modification Plan—

Talk with your child to see what system (chips or charts) would have the most meaning to him and have him help you come up with a list of meaningful rewards to choose from when he meets one of his behavioral-goals.

Chart System:

1. Be sure to recognize if the chosen reinforcement isn’t motivating enough and modify it. Children will lose interest if they don’t see or feel the rewards of their good behavior. Be flexible with the rewards.

2. Break the day into manageable increments of time. For some kids, it may reasonable to expect them to avoid the target behavior for an entire morning, but for others you may need to start with blocks of time as small as 15 minutes long. Remember, you are trying to help your youngster be successful in his efforts.

3. Identify both the behavior you are trying to modify and the behavior with which your youngster needs to replace it. List these behaviors in simple-to-understand, plain language either on the bottom of the chart or on a piece of paper nearby. Try color-coding the undesirable and desirable behaviors and placing them directly across from each other so your youngster can easily see which behavior is inappropriate and what the alternatives are.

4. Identify the areas where the child has strengths. For example, your child may have no problem going to bed on time. Praise the child for this behavior and encourage her/him to keep it up.

5. If focusing on a long term goal is unmanageable, a more immediate reinforcement is needed. You can work for a simpler reward, like a preferred activity such as an extra story at bedtime, a favorite bath toy or a special game.

6. It may be that your youngster has several behaviors that you would like to extinguish or many chores he doesn't complete to your satisfaction, but in order to be successful, you need to choose one or two major issues to tackle first. Behavior charts are only successful if a youngster is given the opportunity to succeed. Choosing too many target behaviors can set him up to fail.

 
7. Promote success at the beginning and work your way up to higher compliance requirements. In order to get your youngster on board and feeling good about using behavior charts at home, you'll need to set your success goals low (perhaps at 30 to 40 % compliance rate). As he shows some consistent success in meeting his goals, you can slowly increase the expectation of what constitutes success.

8. Set up a chart large enough so that your child can see the clear picture of how he is progressing. Let your child help with the designing of the chart; make him feel excited about the program. This lets him understand he is in charge of the results of the program. This is the how your child will start understanding and learning consequences.

9. Update the chart immediately after the desired behavior for a younger child. Update the chart daily for your older child. Do so in the presence of your child reiterating the goals of the program.

10. You can assign levels for different privileges. Earning all stickers every day for a week deserves a big reward. You keep the chart system motivating when you reward smaller privileges based on the number of stickers earned.

Chip System:

1. Be sure to recognize if the chosen reinforcement isn’t motivating enough and modify it. Children will lose interest if they don’t see or feel the rewards of their good behavior. Be flexible with the rewards – and on the first day, give chips out like crazy just so he gets the idea of how to earn them.

2. Break the day into manageable increments of time. For some kids, it may reasonable to expect them to avoid the target behavior for an entire morning, but for others you may need to start with blocks of time as small as 15 minutes long. Remember, you are trying to help your youngster be successful in his efforts.

3. Carry the chips with you in your pocket, and when you catch your youngster doing the right thing, hand him a chip or coin and have him put it in his box. Make a big deal every time you give him a chip, so he fees proud. Remember never to take chips away – this is a reward system – not a punishment system.

4. Chips can be used to do special activities. You can set up an activities chart with your youngster of different preferred activities (e.g., computer time, watching a movie, jumping on the trampoline, a bike ride with dad, a walk with mom, etc.). Have your youngster help you decide how many chips he needs to earn to pay for that special activity. Throughout the day, give your youngster chips when you catch him doing the right thing.

5. Chips work visually and tactilely as a delayed or immediate reward system. You can purchase poker chips or even use coins. Have your youngster decorate a box or a jar that he can place in an easy to access area, to collect chips throughout the day for good behavior. Tell him he will be earning chips for good behaviors and list those good behaviors with him (e.g., cleaning up toys, eating healthy meals, good sharing, good talking, listening when parents are talking, nice touching, etc.).
 

6. Focus on one or two specific goals for intensive behavior change. Or, make a list of generally desirable behaviors, such as cooperation, honesty, kindness, and responsibility. Then, you decide when to reward the youngster with a chip when he exhibits these qualities.

7. For the system to work effectively, the rules for behavior and rewards should be presented so that everyone clearly understands the plan. Small rewards, such as an hour of choosing his favorite TV programs, will usually cost one or two chips. The price is higher for larger rewards, such as dinner out with the family at the youngster's favorite restaurant.

8. Identify the areas where the child has strengths. For example, your child may have no problem going to bed on time. Praise the child for this behavior and encourage her/him to keep it up.

9. If focusing on a long term goal is unmanageable, a more immediate reinforcement is needed. You can work for a simpler reward, like a preferred activity such as an extra story at bedtime, a favorite bath toy or a special game.

10. If your youngster changes some behaviors immediately, continue to positively reinforce him for those behaviors, while adding one or two more challenges to his list of rewarded behaviors. After a few weeks on the chip system, take a break and observe your youngster's progress. You can start back when you recognize a problem.

Most children on the autism spectrum enjoy a behavioral system because it helps them know what is expected of them in a structured, but fun way. Explain that you want them to learn good behavior and habits, and this is a way to do it. Begin immediately, and reward chips and stickers generously. If your behaviors and privileges are not lining up fairly, or your youngster begins to manipulate the system, change it at the end of the week.

Reward systems are to be used in any situation you may need (e.g., getting dressed, keeping your hands to yourself, not making noises, good sharing, not yelling, etc.). If you find that these systems are a positive influence on your child, share the information with his teachers or anyone else that will be interacting with him. Positive reinforcement will be so much easier than any form of punishment. Reward systems are a great way to stay proactive.

A behavior modification program not only offers negative reinforcement to undesirable behaviors, but also rewards positive behavior. Have fun with the program. Negative behavior that isn’t a part of the behavior modification program still needs to be addressed. Use more conventional deterrents like time-outs and groundings. Remember to be consistent and follow through with the program.

Strategies for Transforming ASD Meltdowns into Moments of Connection

Autism Spectrum Disorder (ASD) is a multifaceted neurological condition influencing how individuals interpret the world around them and how ...