Tutelage

“When parents first absorb the information that their child is somewhere on the autism spectrum, they experience various stages of emotion as they cope with feelings of grief and loss. You will, too. Never allow anyone to make you feel guilty for experiencing these emotions. There has been a loss — a loss of dreams, potential, and hopes for a future that will now be different from any you could have anticipated. You most likely will experience guilt, denial, hopelessness, depression, sadness, anger, desperation, and any number of emotional reactions. All of these reactions are normal.”

Excerpt From
The Everything Parent's Guide to Children with Autism
Adelle Jameson Tilton

Emotions identified by physical sensations

Vic Sheffield describes how difficult it is for them to identify what they are feeling and the effects that others' emotions have on them. Vic must rely on how they are physically feeling to identify and label emotions.

Vic

I can't tell which emotions I feel without a previous reference or noting the physical reactions my body has. For instance, fear is overwhelming panic, but my first sign is intense nausea. Sadness feels like an open pit in my stomach. Happiness feels like I'm going to shatter into pieces and float away unless I stim. Intense emotions can be painful. If I'm too fearful, I have to take medicine sometimes because the nausea gets so bad; sadness can physically ache to the point of restricting my movement, and happiness just is unpleasant in the intensity unless I stim ever more vigorously.

I have to identify an emotion based on the physical manifestation, then recall past times with that emotion, to figure out why I'm feeling it. So it takes some time. I probably look confused to others a lot because I can't immediately identify an emotion, and sometimes it overwhelms me, leading to shutdown or meltdown, before I can identify it.

Despite this, my emotions are very influenced by other people. I can feel others' emotions better than my own, somehow. It's like everyone walks around with clouds of emotion surrounding their body, except my cloud is a black hole that only weakly produces its own emotions but tends to absorb others' emotions. I'll become extremely upset if I walk past someone sad. I've had panic attacks from being near someone who is afraid for too long. However, I can be influenced to be angry when in a room with tense people, which can lead to trouble when I unknowingly invade a fight and get myself caught in the middle. Similarly, if I'm in a bad mood and seek out a happy person, they'll change my mood for the better without much effort on my part.

Turning video games into strengths!
For many children on the spectrum, computer technology is a blessing for them. It fits there "learning style" perfectly (visual, focus on detail/patterns, minimal social interaction, immediate feedback, and very stimulating to the executive functioning part of the brain). Computers also allow the children to move at their own pace (fast or slow) and gives them immediate feedback. Essentially, it allows many people on the spectrum to let their talents shine and develop. Naturally, they would feel very safe and competent in utilizing technology. Whereas for many neurotypical children, computer technology may be hampering direct social skills and possibly fostering a dependency on high visual stimulation, for kids on the spectrum this technology can foster social skills and offers a medium to use their skills.
Remember that the best way to motivate individuals on the spectrum is to work with their strengths, interests, and what allows them to feel competent. I think the best thing to do with video games is to expand them into more functional learning games. I would go from regular video games into more educational software like Sim city, history adventures, problem-solving games, engineering (Legos software), etc. There are construction games, astronomy software, mathematical games, etc. Try to find games that combine software with building something or researching a favorite topic. Find what skills and interest the child has and buy software that expands on it. Also, games like Wii are great, especially if it involves physical activity and co-regulating with others.
You want to teach the children to use computers/video games to learn and expand themselves, rather than focus on simple arcade type games. Video is a strong interest of kids on the spectrum, so we need to use this medium to expand their world. Drafting, engineering, graphic design, mechanical design, composing music, painting, photography, etc. are all go ways to use video. There are apps, games, and learning software for just about any interests and needed skill development.
Also, interactive games like Wii, which involves physical activity and co-regulation with others, are valuable. There is also newly developed software for teaching social skills, facial expressions, social problem solving, and video modeling. These are all great. Video interplay is a good tool that maximizes one of the strengths of many people on the spectrum. Yes, it needs to be controlled and integrated with other learning and activity, but can be used to develop several skills. Since it is a medium that the kids feel very comfortable with, we should use it for development in many areas. Let’s not suppress the main strength that they have; steer it in the right direction.
For example, I was consulting with a family with a young man of 20 years old. He is not allowed in school or work programs because of problem behavior, and because of anxiety issues is often confined to his home and immediate neighborhood. We were out to his house using a digital camera to take pictures for the picture schedule, and he kept instructing us on what angle to take the pictures, what detail we needed to put in them, and how to use the lighting. He showed a great interest in photography just by his delight in making these household pictures. From there, we took off on this strength. We are going to get him a digital camera and some photo software, have him sign up for an online photography course, and join a photography message board. He can develop, crop, and categorize photos, develop a website to display his photos, and eventually connect with some amateur photography groups in the community. His main interest at home is animals. He has a variety of dogs, exotic cats, turtles, and furless guinea pigs. Like many people on the spectrum, he connects better with animals than people. So my guess he could become very skilled in taking photos of animals. Animals are another area we can use the internet to research and expand this interest.
This series on “Strengths and interests” can be found in the green book. “Autism Discussion Page on Anxiety, Behavior, School and Parenting Strategies.

Habitual Behavior

Why are bad habits so hard to break? Especially ritualistic behaviors that seem to be self-abusive, like pulling out your hair, or picking at your fingers. Even for neurotypical people who have these habits, they are very difficult to break. The reason is the stimulation feels good to the brain. Yes, even certain pain can be experienced as pleasure. What makes a habit is the constant repetition of behavior resulting in pleasurable stimulation (or escaping non-pleasurable stimulation.) The more you do it, the more you create a neurological pathway in your brain that eventually craves the stimulation. It becomes addicting.

Research is showing that habits are created in the basal ganglia area of the brain (primitive area of the brain), which is below our conscious awareness. These habits develop without us being aware that these connections are developing. When engaging in these behaviors, the environmental cues that are occurring at the time become associated with the behavior and eventually cause graving. For example, if you tend to snack while watching television, then just sitting down to watch television will often elicit the craving to eat. Television = graving to eat, TV = eat, TV = eat! You don’t have to be thinking about it for that craving to start. If you smoke, you will find that there are numerous times during the day (environmental cues) that trigger you to smoke (time, events, etc.). You are not even aware of most of them. This cue – behavior – stimulation chain is usually occurring below your level of awareness. Suddenly you crave the stimulation. Over and over, with each repetition, the neuropathway is developed, creating this craving and cue-behavior-reinforcement loop.

Such behavior is so frustrating because it is difficult to stop something that you are not aware of. You may also engage in the behavior (pull hair, pick skin, or bite nails) without even being aware of it. And once you start the chain of events, the graving gets worse, making it harder to stop. Even though you become aware that you are doing it, you can’t stop the craving. All along, the cravings and environmental cues that trigger them, become more engrained without your conscious awareness. We have many habits that occur every day with little awareness on our part. Unfortunately, some of these habits can become compulsive behaviors and addictions.

Self-stimulation can also be a habitual response. Also, many forms of self-injurious behavior (skin picking, scratching, lip-biting, etc.) can develop the same way. All of us have some forms of self-stimulation; hair twirling, cracking knuckles, tapping a foot, doodling, playing with ear lobe, etc. Compulsive eating, smoking, and other bad habits can also develop the same way. If you try to stop bad habits, you probably notice that you can control them for a brief time but usually lose the battle once your attention is distracted, or you become stressed. It takes a lot of conscious effort (mental energy) to suppress these urges, and once we are distracted or stressed, we lose our ability to inhibit these urges. This is even harder for many on the spectrum because they often have weaknesses in the executive functioning skills (ability to check impulses, inhibit urges, keep the focus on your plan, etc.). Also, suppressing self-stimulation requires extensive energy and creates strong anxiety. Habits and repetitive behaviors can develop for a variety of reasons and serve multiple purposes. Most are coping skills and do not need changing. Some are bad habits in that they are injurious to self or others or greatly infringe on the rights of others. Most people would like to change, but find it very difficult.

How do you increase the likelihood of changing bad habits? It is almost impossible for many to stop them. They are so strong and often occur without conscious effort. The best way to reduce a bad habit is to develop a better habit to takes its place. Another behavior pattern that serves the same purpose, is just as easy to implement and is portable so that it is always available, but especially when the urge to engage occurs. Most effective strategies focus on teaching a replacement behavior to substitute for the behavior you want to decrease. In essence, you want to shape a good habit before trying to stop the bad habit. This goes for everyone, on or off the spectrum. We all have bad habits we wish we could get rid of. Instead, try establishing a good habit before trying to reduce the bad habit. For example, if your child is grinding his teeth, try establishing chewing sugarless gum or chewing on chewery. Once the child gets used to chewing, then start redirecting him or her to that when the urge to grind teeth occurs. First, establish the new habit then use it to replace the bad habit. This takes time. Remember, for the replacement behavior to work, it must be portable (with them at all time) and as easy to do as the bad habit (if it takes a lot more effort, he will continue with the bad habit). Simply telling a child to stop doing a habitual behavior will not work for long. They may be able to suppress the behavior for a brief time, but he will be right back at it. Teach a replacement behavior, so you are not telling him to “stop” but focusing on “what’ you want him to do (replacement behavior).

WHAT PARENTS AND TEACHERS SHOULD KNOW ABOUT ADHD

ccf.fiu.edu

Overview of ADHD

Everybody can have difficulty sitting still, paying attention or controlling impulsive behavior once in a while. For some people, however, the problems are so pervasive and persistent that they interfere with every aspect of their life: home, academic, social and work.

Attention-deficit/hyperactivity disorder (ADHD) is a neurodevelopmental disorder affecting 11 percent of school-age children. Symptoms continue into adulthood in more than three-quarters of cases. ADHD is characterized by developmentally inappropriate levels of inattention, impulsivity and hyperactivity.

Individuals with ADHD can be very successful in life. However, without identification and proper treatment, ADHD may have serious consequences, including school failure, family stress and disruption, depression, problems with relationships, substance abuse, delinquency, accidental injuries and job failure. Early identification and treatment are extremely important.

Medical science first documented children exhibiting inattentiveness, impulsivity and hyperactivity in 1902. Since that time, the disorder has been given numerous names, including minimal brain dysfunction, hyperkinetic reaction of childhood, and attention-deficit disorder with or without hyperactivity. With the Diagnostic and Statistical Manual, Fifth Edition (DSM-5) classification system, the disorder has been renamed attention-deficit/hyperactivity disorder or ADHD. The current name reflects the importance of the inattention aspect of the disorder as well as the other characteristics of the disorder such as hyperactivity and impulsivity.

Symptoms

Typically, ADHD symptoms arise in early childhood. According to the DSM-5, several symptoms are required to be present before the age of 12. Many parents report excessive motor activity during the toddler years, but ADHD symptoms can be hard to distinguish from the impulsivity, inattentiveness and active behavior that is typical for kids under the age of four. In making the diagnosis, children should have six or more symptoms of the disorder present; adolescents 17 and older and adults should have at least five of the symptoms present. The DSM-5 lists three presentations of ADHD—Predominantly Inattentive, Hyperactive-Impulsive and Combined. The symptoms for each are adapted and summarized below.

ADHD predominantly inattentive presentation

Fails to give close attention to details or makes careless mistakes
Has difficulty sustaining attention
Does not appear to listen
Struggles to follow through with instructions
Has difficulty with organization
Avoids or dislikes tasks requiring sustained mental effort
Loses things
Is easily distracted
Is forgetful in daily activities
ADHD predominantly hyperactive-impulsive presentation

Fidgets with hands or feet or squirms in chair
Has difficulty remaining seated
Runs about or climbs excessively in children; extreme restlessness in adults
Difficulty engaging in activities quietly
Acts as if driven by a motor; adults will often feel inside as if they are driven by a motor
Talks excessively
Blurts out answers before questions have been completed
Difficulty waiting or taking turns
Interrupts or intrudes upon others
ADHD combined presentation

The individual meets the criteria for both inattention and hyperactive-impulsive ADHD presentations.
These symptoms can change over time, so children may fit different presentations as they get older.

Confusing labels for ADHD

In 1994, the name of the disorder was changed in a way that is confusing for many people. Since that time all forms of attention deficit disorder are officially called “Attention-Deficit/Hyperactivity Disorder,” regardless of whether the individual has symptoms of hyperactivity or not. Even though these are the official labels, a lot of professionals and lay people still use both terms: ADD and ADHD. Some use those terms to designate the old subtypes; others use ADD just as a shorter way to refer to any presentation.

Severity of symptoms

As ADHD symptoms affect each person to varying degrees, the DSM-5 now requires professionals diagnosing ADHD to include the severity of the disorder. How severe the disorder is can change with the presentation during a person’s lifetime. Clinicians can designate the severity of ADHD as “mild,” “moderate” or “severe” under the criteria in the DSM-5.

Mild: Few symptoms beyond the required number for diagnosis are present, and symptoms result in minor impairment in social, school or work settings.
Moderate: Symptoms or functional impairment between “mild” and “severe” are present.
Severe: Many symptoms are present beyond the number needed to make a diagnosis; several symptoms are particularly severe; or symptoms result in marked impairment in social, school or work settings.

As individuals age, their symptoms may lessen, change or take different forms. Adults who retain some of the symptoms of childhood ADHD, but not all, can be diagnosed as having ADHD in partial remission.

ADHD throughout the lifespan

Children with ADHD often experience delays in independent functioning and may behave younger than their peers. Many children affected by ADHD can also have mild delays in language, motor skills or social development that are not part of ADHD but often co-occur. They tend to have low frustration tolerance, difficulty controlling their emotions and often experience mood swings.

Children with ADHD are at risk for potentially serious problems in adolescence and adulthood: academic failure or delays, driving problems, difficulties with peers and social situations, risky sexual behavior, and substance abuse. There may be more severe negative behaviors with co-existing conditions such as oppositional defiant disorder or conduct disorder. Adolescent girls with ADHD are also more prone to eating disorders than boys. As noted above, ADHD persists from childhood to adolescence in the vast majority of cases (50–80 percent), although the hyperactivity may lessen over time.

Teens with ADHD present a special challenge. During these years, academic and life demands increase. At the same time, these kids face typical adolescent issues such as emerging sexuality, establishing independence, dealing with peer pressure and the challenges of driving.

More than 75 percent of children with ADHD continue to experience significant symptoms in adulthood. In early adulthood, ADHD may be associated with depression, mood or conduct disorders and substance abuse. Adults with ADHD often cope with difficulties at work and in their personal and family lives related to ADHD symptoms. Many have inconsistent performance at work or in their careers; have difficulties with day-to-day responsibilities; experience relationship problems; and may have chronic feelings of frustration, guilt or blame.

Individuals with ADHD may also have difficulties with maintaining attention, executive function and working memory. Recently, deficits in executive function have emerged as key factors affecting academic and career success. Executive function is the brain’s ability to prioritize and manage thoughts and actions. This ability permits individuals to consider the long-term consequences of their actions and guide their behavior across time more effectively. Individuals who have issues with executive functioning may have difficulties completing tasks or may forget important things.

Co-occurring Disorders

More than two-thirds of children with ADHD have at least one other co-existing condition. Any disorder can co-exist with ADHD, but certain disorders seem to occur more often. These disorders include oppositional defiant and conduct disorders, anxiety, depression, tic disorders or Tourette syndrome, substance abuse, sleep disorders and learning disabilities. When co-existing conditions are present, academic and behavioral problems, as well as emotional issues, may be more complex.

These co-occurring disorders can continue throughout a person’s life. A thorough diagnosis and treatment plan that takes into account all of the symptoms present is essential.

Causes

Despite multiple studies, researchers have yet to determine the exact causes of ADHD. However, scientists have discovered a strong genetic link since ADHD can run in families. More than 20 genetic studies have shown evidence that ADHD is strongly inherited. Yet ADHD is a complex disorder, which is the result of multiple interacting genes.

Other factors in the environment may increase the likelihood of having ADHD:

exposure to lead or pesticides in early childhood
premature birth or low birth weight
brain injury
Scientists continue to study the exact relationship of ADHD to environmental factors, but point out that there is no single cause that explains all cases of ADHD and that many factors may play a part.

Previously, scientists believed that maternal stress and smoking during pregnancy could increase the risk for ADHD, but emerging evidence is starting to question this belief. However, further research is needed to determine if there is a link or not.

The following factors are NOT known causes, but can make ADHD symptoms worse for some children:

watching too much television
eating sugar
family stress (poverty, family conflict)
traumatic experiences
ADHD symptoms, themselves, may contribute to family conflict. Even though family stress does not cause ADHD, it can change the way the ADHD presents itself and result in additional problems such as antisocial behavior.

Problems in parenting or parenting styles may make ADHD better or worse, but these do not cause the disorder. ADHD is clearly a brain-based disorder. Currently research is underway to better define the areas and pathways that are involved.

Myth #9: ADHD is over diagnosed.
Fact: It is estimated that 17 million children and adults in the United States have ADHD. In many populations, ADHD is actually underdiagnosed. For example, studies show that black and Hispanic students in grades one through eight are significantly less likely to receive an accurate diagnosis, and when diagnosed, are less likely to receive medication. According to current numbers reported by the leading science-based organizations, including the U.S. Centers for Disease Control, the rate of prevalence in the U.S. is eight percent of children and 4.4 percent of adults. Ongoing research indicates those rates may actually be higher. Many children and adults remain undiagnosed, while many who have been diagnosed are not receiving the proper treatment. ADHD may be diagnosed in error if the clinician is not adequately trained or does not spend the time needed to perform a comprehensive evaluation.

Myth #8: Medications are toxic and therapy doesn’t work.
Fact: ADHD is highly manageable with an individualized, multimodal treatment approach that can include behavioral interventions, parent and patient training, educational support and medication. Medications for ADHD are among the most effective treatments in all of medicine.

Myth #7: ADHD is a condition that doesn’t cause severe problems.

Fact: ADHD life is riddled with difficulties in functioning, interpersonal, social, academic and professional skills. It can lead to significant issues at school and work, relationship problems, anxiety, depression, financial struggles and legal difficulties. Among adults with ADHD, there is lower educational achievement and career attainment, co-occurring psychiatric disorders and higher su***de rates. Children with ADHD have higher rates of retention in grade level, high school dropout, substance abuse, co-occurring psychiatric disorders, unintentional injuries and emergency department visits.