Saturday, April 28, 2007

Meltdowns How to Handle One

A Guide to Improving Behaviors in Children with Autism Spectrum Disorders

Children with Autism Spectrum Disorders (ASD) experience the world in a very different way than other children. For these children, behaviors considered to be inappropriate, such as outbursts, tantrums or "meltdowns" may be their only way to communicate their needs, wants and frustrations. Sadly, many parents and family members often do not understand why a child is misbehaving and their actions may make a behavior worse. In addition to causing family problems at home, these behaviors may also result in children with ASD doing poorly in school and at community events, and lead to a difficulty maintaining friendships.

Understanding potential causes of behavioral difficulties for children with ASD and developing tools and techniques to improve your child's behaviors can lead to a happier and more fulfilling life for the whole family.

Leading Causes of Inappropriate Behaviors

Communication delays: Children with ASD may not always understand what is being said to them or asked of them, due to their communication delays. They also may lack the language to adequately express their wants and needs. Acting out, or throwing a tantrum, is a good way to get attention and often is the only way the children can express themselves.

Sensory dysfunctions: Sensory dysfunctions can also be a primary cause of behavioral issues. A common feature of ASD is oversensitivity to sounds, texture, smell and lights. For a child with ASD, it can be as bad as experiencing his or her environment as a jarring alarm going off constantly, a strobe light flashing, a putrid smell everywhere, a feeling of clothing being overly tight and itchy, being asked questions in a foreign language and getting in trouble when the answer is wrong. Very few people would be able to keep their behavior in check under such circumstances, but this is often an everyday reality for children with ASD.

Need for routine: A core feature of ASD is the need for sameness or routine. When children impose a high level of rigidity and structure on their environment, they are setting up unrealistic expectations. When these expectations are not met, it leads to an increase in anxiety and frustration, which, in turn, leads to an increase in behavioral problems.

Tips to Avoid Behavioral Difficulties in Children with ASD

1. Focus on the positive: The best way to eliminate negative behaviors is to reinforce the positive behaviors children engage in throughout the day. This will increase the likelihood they will repeat those behaviors. For example, praising children for homework they've already completed is more effective than yelling at them to finish it. Use motivating statements like, "Wow, I see you've been working hard on your homework. I'll bet you'll be finished in no time at all." When children with ASD finish a task, it is important to give some kind of reinforcement, such as a treat, a token or praise.

2. Tell the child what to do instead of what not to do: In general, it is more effective to give children direct commands. This is particularly true for children with ASD as they often take language literally. When we tell kids what not to do, we assume they will know what the appropriate alternative behavior is. For instance, if you tell a child with ASD "do not jump in the puddle," he may not understand that means "go around" the puddle; instead, he may think it is ok to splash in the puddle, walk through the puddle, etc. Saying, "Walk around the puddle" makes expectations clear and reduces behavioral outbursts or unexplained reactions to what they perceive to be correct.

3. Avoid using too much language: Children with ASD often have communication deficits. When frustrated or anxious, they may be even less able to understand spoken language than usual. Rather than trying to reason with a child in the middle of a tantrum, try to use few words and concrete language. Statements such as, "It is time to get in the car" are more easily understood and followed than if you explain why the child needs to get in the car, how you are going to be late and what will happen if he or she doesn't get in the car.

4. Warn your child of upcoming changes or transitions: While it may not always be possible, it is best to tell a child with ASD about any change that may be occurring and give them plenty of time to adjust. If you are buying new furniture, share pictures or bring your child to the showroom to see and touch it. Ask for help to decide where to place the furniture. This prepares the child for change and reduces anxiety.

5. Use visual schedules or reminders: Structure and consistency are two keys to improving behaviors. A fun way to do this is to develop simple visual reminders or schedules. This can be as simple as putting a picture of your child's teacher on the calendar for every day that he or she needs to go to school, or as complex as having a full schedule written out for every step for getting ready to go to school, along with the expected times of completion.

6. Teach calming techniques: Often, we tell a child to "calm down" when they are feeling anxious or upset. The problem is that we only use the word "calm" when a child is upset. It is important to identify for children what it means to be relaxed or "calm" so that they know the feeling we want them to experience. Try different relaxation techniques - counting to 10, taking deep breaths, yoga, music - to see which ones works best for your child. What calms any child may be highly individualized.

7. Beware of sensory overload: It is always important to look at the environment that your child is in, and determine if it is over-stimulating. A child may throw a tantrum in the grocery store because it is too bright or the "beep beep" of the price scanners is bothersome. The tantrum may be the only way the child knows to quickly get parents out of the store. If you think your child has sensory issues, develop coping strategies, such as letting him or her wear sunglasses in the shop, or listen to music to drown out upsetting sounds.

Use "time-out" effectively: The use of techniques, such as "time-out," - a common punishment that removes a child from an enjoyable activity -- needs to be used with careful consideration in a child with ASD. Time-out may not be effective because what other children consider an enjoyable activity may not be fun for your child with ASD. For example, a child may be held back from recess because she hasn't finished her work. However, if the child finds recess too loud, too unstructured and too crowded, she will actually prefer staying in over going to recess, and may even stop doing school work in an effort to avoid recess. The teacher in this case has mistakenly reinforced the negative behavior by assuming that the child wanted to go to recess. At home a child may be sent to his room after having a temper tantrum during the family dinner. The child may have thrown the tantrum because there was too much language being used at the table, or he did not like the smell of the food. Therefore, sending him away from the table and allowing him to be alone in his room may actually be what he prefers.

These simple strategies are applicable in any environment and can be used by parents and family members as well as health care professionals and educators. Consistent and regular use of these tips can prevent or reduce inappropriate behaviors. It's important to always keep in mind that children with ASD are not necessarily being manipulative or stubborn when they are having behavioral difficulties. They may not have any other way to express what they are experiencing. If we learn to listen to behaviors, we'll be able help them handle them in a more effective and productive manner.

What the mom is doing here is very important.Encouraging an Autistic child to verbalize what he feels is very important to stop or minimize meltdowns.It takes a long time to do this but it will pay off in the end.

Watch in the last video how patient the dad was with the boy.Ignoring does help when they start playing up.Be firm in what you intend to teach them and they will respond.This of course doesnt work all the time.Varied ways of dealing with the tantrums.If one doesnt work,think of another one.The important thing is the child knows you are in control.

Thursday, April 26, 2007

Teaching Tips for Children and Adults with Autism

Temple Grandin, Ph.D.
Assistant Professor
Colorado State University
Fort Collins, CO 80523, USA
(Revised: December 2002)

Good teachers helped me to achieve success. I was able to overcome autism because I had good teachers. At age 2 1/2 I was placed in a structured nursery school with experienced teachers. From an early age I was taught to have good manners and to behave at the dinner table. Children with autism need to have a structured day, and teachers who know how to be firm but gentle.

Between the ages of 2 1/4 and 5 my day was structured, and I was not allowed to tune out. I had 45 minutes of one-to-one speech therapy five days a week, and my mother hired a nanny who spent three to four hours a day playing games with me and my sister. She taught 'turn taking' during play activities. When we made a snowman, she had me roll the bottom ball; and then my sister had to make the next part. At mealtimes, every-body ate together; and I was not allowed to do any "stims." The only time I was allowed to revert back to autistic behavior was during a one-hour rest period after lunch. The combination of the nursery school, speech therapy, play activities, and "miss manners" meals added up to 40 hours a week, where my brain was kept connected to the world.

1.) Many people with autism are visual thinkers. I think in pictures. I do not think in language. All my thoughts are like videotapes running in my imagination. Pictures are my first language, and words are my second language. Nouns were the easiest words to learn because I could make a picture in my mind of the word. To learn words like "up" or "down," the teacher should demonstrate them to the child. For example, take a toy airplane and say "up" as you make the airplane takeoff from a desk. Some children will learn better if cards with the words "up" and "down" are attached to the toy airplane. The "up" card is attached when the plane takes off. The "down" card is attached when it lands.

2.) Avoid long strings of verbal instructions. People with autism have problems with remembering the sequence. If the child can read, write the instructions down on a piece of paper. I am unable to remember sequences. If I ask for directions at a gas station, I can only remember three steps. Directions with more than three steps have to be written down. I also have difficulty remembering phone numbers because I cannot make a picture in my mind.

3.) Many children with autism are good at drawing, art and computer programming. These talent areas should be encouraged. I think there needs to be much more emphasis on developing the child's talents. Talents can be turned into skills that can be used for future employment.

4.) Many autistic children get fixated on one subject such as trains or maps. The best way to deal with fixations is to use them to motivate school work. If the child likes trains, then use trains to teach reading and math. Read a book about a train and do math problems with trains. For example, calculate how long it takes for a train to go between New York and Washington.

5.) Use concrete visual methods to teach number concepts. My parents gave me a math toy which helped me to learn numbers. It consisted of a set of blocks which had a different length and a different color for the numbers one through ten. With this I learned how to add and subtract. To learn fractions my teacher had a wooden apple that was cut up into four pieces and a wooden pear that was cut in half. From this I learned the concept of quarters and halves.

6.) I had the worst handwriting in my class. Many autistic children have problems with motor control in their hands. Neat handwriting is sometimes very hard. This can totally frustrate the child. To reduce frustration and help the child to enjoy writing, let him type on the computer. Typing is often much easier.

7.) Some autistic children will learn reading more easily with phonics, and others will learn best by memorizing whole words. I learned with phonics. My mother taught me the phonics rules and then had me sound out my words. Children with lots of echolalia will often learn best if flash cards and picture books are used so that the whole words are associated with pictures. It is important to have the picture and the printed word on the same side of the card. When teaching nouns the child must hear you speak the word and view the picture and printed word simultaneously. An example of teaching a verb would be to hold a card that says "jump," and you would jump up and down while saying "jump."

8.) When I was a child, loud sounds like the school bell hurt my ears like a dentist drill hitting a nerve. Children with autism need to be protected from sounds that hurt their ears. The sounds that will cause the most problems are school bells, PA systems, buzzers on the score board in the gym, and the sound of chairs scraping on the floor. In many cases the child will be able to tolerate the bell or buzzer if it is muffled slightly by stuffing it with tissues or duct tape. Scraping chairs can be silenced by placing slit tennis balls on the ends of the legs or installing carpet. A child may fear a certain room because he is afraid he may be suddenly subjected to squealing microphone feedback from the PA system. The fear of a dreaded sound can cause bad behavior. If a child covers his ears, it is an indicator that a certain sound hurts his ears. Sometimes sound sensitivity to a particular sound, such as the fire alarm, can be desensitized by recording the sound on a tape recorder. This will allow the child to initiate the sound and gradually increase its volume. The child must have control of playback of the sound.

9.) Some autistic people are bothered by visual distractions and fluorescent lights. They can see the flicker of the 60-cycle electricity. To avoid this problem, place the child's desk near the window or try to avoid using fluorescent lights. If the lights cannot be avoided, use the newest bulbs you can get. New bulbs flicker less. The flickering of fluorescent lights can also be reduced by putting a lamp with an old-fashioned incandescent light bulb next to the child's desk.

10.) Some hyperactive autistic children who fidget all the time will often be calmer if they are given a padded weighted vest to wear. Pressure from the garment helps to calm the nervous system. I was greatly calmed by pressure. For best results, the vest should be worn for twenty minutes and then taken off for a few minutes. This prevents the nervous system from adapting to it.

11.) Some individuals with autism will respond better and have improved eye contact and speech if the teacher interacts with them while they are swinging on a swing or rolled up in a mat. Sensory input from swinging or pressure from the mat sometimes helps to improve speech. Swinging should always be done as a fun game. It must NEVER be forced.

12.)They respond better if words and sentences are sung to them. Some children with extreme sound sensitivity will respond better if the teacher talks to them in a low whisper.

13.) Some nonverbal children and adults cannot process visual and auditory input at the same time. They are mono-channel. They cannot see and hear at the same time. They should not be asked to look and listen at the same time. They should be given either a visual task or an auditory task. Their immature nervous system is not able to process simultaneous visual and auditory input.

14.) In older nonverbal children and adults touch is often their most reliable sense. It is often easier for them to feel. Letters can be taught by letting them feel plastic letters. They can learn their daily schedule by feeling objects a few minutes before a scheduled activity. For example, fifteen minutes before lunch give the person a spoon to hold. Let them hold a toy car a few minutes before going in the car.

15.) Some children and adults with autism will learn more easily if the computer key-board is placed close to the screen. This enables the individual to simultaneously see the keyboard and screen. Some individuals have difficulty remembering if they have to look up after they have hit a key on the keyboard.

16.) Nonverbal children and adults will find it easier to associate words with pictures if they see the printed word and a picture on a flashcard. Some individuals do not under-stand line drawings, so it is recommended to work with real objects and photos first. The picture and the word must be on the same side of the card.

17.) Some autistic individuals do not know that speech is used for communication. Language learning can be facilitated if language exercises promote communication. If the child asks for a cup, then give him a cup. If the child asks for a plate, when he wants a cup, give him a plate. The individual needs to learn that when he says words, concrete things happen. It is easier for an individual with autism to learn that their words are wrong if the incorrect word resulted in the incorrect object.

18.) Many individuals with autism have difficulty using a computer mouse. Try a roller ball (or tracking ball) pointing device that has a separate button for clicking. Autistics with motor control problems in their hands find it very difficult to hold the mouse still during clicking.

19.) Children who have difficulty understanding speech have a hard time differentiating between hard consonant sounds such as 'D' in dog and 'L' in log. My speech teacher helped me to learn to hear these sounds by stretching out and enunciating hard consonant sounds. Even though the child may have passed a pure tone hearing test he may still have difficulty hearing hard consonants. Children who talk in vowel sounds are not hearing consonants.

20.) Several parents have informed me that using the closed captions on the television helped their child to learn to read. The child was able to read the captions and match the printed works with spoken speech. Recording a favorite program with captions on a tape would be helpful because the tape can be played over and over again and stopped.

21.) Some autistic individuals do not understand that a computer mouse moves the arrow on the screen. They may learn more easily if a paper arrow that looks EXACTLY like the arrow on the screen is taped to the mouse.

22.) Children and adults with visual processing problems can see flicker on TV type computer monitors. They can sometimes see better on laptops and flat panel displays which have less flicker.

23.) Children and adults who fear escalators often have visual processing problems. They fear the escalator because they cannot determine when to get on or off. These individuals may also not be able to tolerate fluorescent lights. The Irlen colored glasses may be helpful for them.

24.) Individuals with visual processing problems often find it easier to read if black print is printed on colored paper to reduce contrast. Try light tan, light blue, gray, or light green paper. Experiment with different colors. Avoid bright yellow--it may hurt the individual's eyes. Irlen colored glasses may also make reading easier. (Click here to visit the Irlen Institute's web site.)

25.) Teaching generalization is often a problem for children with autism. To teach a child to generalize the principle of not running across the street, it must be taught in many different locations. If he is taught in only one location, the child will think that the rule only applies to one specific place.

26.) A common problem is that a child may be able to use the toilet correctly at home but refuses to use it at school. This may be due to a failure to recognize the toilet. Hilde de Clereq from Belgium discovered that an autistic child may use a small non-relevant detail to recognize an object such as a toilet. It takes detective work to find that detail. In one case a boy would only use the toilet at home that had a black seat. His parents and teacher were able to get him to use the toilet at school by covering its white seat with black tape. The tape was then gradually removed and toilets with white seats were now recognized as toilets.

27.) Sequencing is very difficult for individuals with severe autism. Sometimes they do not understand when a task is presented as a series of steps. An occupational therapist successfully taught a nonverbal autistic child to use a playground slide by walking his body through climbing the ladder and going down the slide. It must be taught by touch and motor rather than showing him visually. Putting on shoes can be taught in a similar manner. The teacher should put her hands on top of the child’s hands and move the child’s hands over his foot so he feels and understands the shape of his foot. The next step is feeling the inside and the outside of a slip-on shoe. To put the shoe on, the teacher guides the child’s hands to the shoe and, using the hand-over-hand method, slides the shoe onto the child’s foot. This enables the child to feel the entire task of putting on his shoe.

28.) Fussy eating is a common problem. In some cases the child may be fixated on a detail that identifies a certain food. Hilde de Clerq found that one child only ate Chiquita bananas because he fixated on the labels. Other fruit such as apples and oranges were readily accepted when Chiquita labels were put on them. Try putting different but similar foods in the cereal box or another package of a favorite food. Another mother had success by putting a homemade hamburger with a wheat free bun in a McDonald’s package.

Friday, April 20, 2007

Concerns About A Child

Concerns About a Child

Making Observations

If you have ever had concerns about your child’s development, you are not alone. Whether you’re worried about your child’s use of language, ability to relate to others, or any other developmental concerns, your child relies on you to share your observations with those who can help. Having occasional concerns is a natural part of parenting. But when these concerns persist, it’s time to take action.

Here, we offer parents and professionals important information about healthy development, how to monitor it, and how to know when a child has deviated from a healthy developmental path. We focus on the key social, emotional, and communication milestones and the red flags that may require an immediate evaluation. We try to help work through the range of concerns and realities that many parents face, and provide suggestions as to how parents, concerned friends, family members, and even healthcare professionals can describe their concerns to those who can help. Finally, we provide information about autism and other developmental disorders.

Being aware of what children do and learn as they develop sets the stage to let you know if they are on the right path. Physicians are essential to help determine this. By monitoring healthy (or typical) developmental milestones, parents and professionals must work together to promote healthy development and to recognize when a child needs an immediate evaluation.

Visit our developmental checklist on our Monitoring Development Web page to learn more about the key social, emotional, and communication milestones for young children (birth to age three). Also visit our Red Flags Web page, which describes the critical warning signs for when a child is at risk for developmental delays and disorders.

Parents are in the best position to observe and report what their child is doing. Be confident that you know your child better than anyone else. Trust your instincts. When you child’s development worries you, don’t be afraid to describe these concerns to your child’s physician. And don’t wait. Developmental delays only develop further. Remember, you are your child’s best advocate. By expressing your concerns to your child’s physician, you take an important step toward ruling out or in what your child may have. The sooner you can identify a developmental delay, the sooner your child can receive appropriate intervention to improve the situation.

Of course, some concerns may end up being nothing at all, even though you worried through many sleepless nights. Some concerns may be mild early signs of real problems that can easily be corrected if treated right way. Still other concerns may indeed be a more significant developmental delay or disorder for which early and intensive intervention is the key to a successful outcome.

Sharing Concerns Parent to Physician

Parents often have a difficult time sharing concerns about their child. The following outlines four crucial steps to follow with your child’s physician, and highlights the importance of a patient but persistent approach.

  • Be prepared
  • Express your concerns clearly
  • Ask questions
  • Follow up

Each well visit provides an opportunity for your child to receive a routine developmental screening; however, if you don’t ask, it may not be offered. Whether or not you have specific concerns about your child’s development, it is best to come to the doctor’s office prepared. Physicians rely on parents to provide information about their child. As a parent, you are your child’s best advocate and a “resident expert” about your child’s health and development. During a well visit, a physician usually sees a child for less than 15 minutes, even less if there has been an emergency that day. It is a challenge, for both the parent and the physician, to cover the wide range of issues related to a child’s health within a limited time.

If you have concerns about your child’s development, take the following four crucial steps: be prepared, express your concerns clearly, ask questions, and follow up.

1. Be prepared. Before you go to your next well visit, print out the checklist of developmental milestones and note whether your child has met each of the expected milestones. If you have questions or concerns, write down a few concrete examples that might assist your physician:

  • “My child doesn’t respond to my voice.”
  • “He spends so much time lining up his toys, he has no interest in other children.”
  • “She hasn’t learned a new word in months.”
  • “He doesn’t look at me—he never makes eye contact.”

Whether or not you have concerns, ask your doctor for a routine screening.

2. Express your concerns clearly. While this issue can be an emotional one, try to focus on your concrete concerns, such as developmental milestones. If your physician doesn’t want to perform a screening, or isn’t responsive to your concerns, be persistent. Ask why. And remember, “don’t worry” or “let’s wait and see” are not adequate responses. Schedule a follow up appointment, if necessary, or ask for a referral to a developmental pediatrician. Your child’s healthy development is your most important concern.

3. Ask questions. If there are terms you don’t understand, ask your physician to explain. After the screening, ask what the results show, and what they mean. Inquire about referrals to specialists. Ask what the next step will be.

4. Follow up. For most parents, routine screenings indicate that a child is following a typical development pattern. Screenings at well visits in the future will help to confirm that. For other parents, who learn from the screening that their child may be at risk of a developmental delay, follow up is crucial. Children at risk of atypical development are routinely referred to Early Intervention for a closer look by a developmental specialist. You also may want a referral to a developmental pediatrician, a psychologist, a neurologist, a psychiatrist, or a specialist for further evaluation.

Through all four steps, some parents may stumble or falter. Grief and disbelief can prove to be great hurdles. Parents may fear the worst and not move forward. Other parents may feel uncomfortable questioning their physicians. Proceed with confidence, as parents know their child best. Only by pursuing your questions and concerns, forming a sharing relationship with your child’s physician and then by following up with him/her, can you ensure the best possible outcome for your child. Be patient with yourself and persistent for your child. Get the help your child needs.

“Pediatricians are the only professionals with knowledge of development who are in routine contact with the families of young children. Parents turn to their pediatrician for information about development, for assessment of whether their children are doing all right or not. If pediatricians don’t know or aren’t sure or don’t have the appropriate tools, the children with delays or disorders are missed.

Sharing Concerns Physician to Parent

Physicians may also find it challenging to identify children at risk for developmental delays and disorders and difficult to express their concerns about a child's development with parents or caregivers. No doubt about it, these are critical life-changing discussions that require time, sensitivity, honesty, planning, and follow-through on your part. Here are some suggestions as to how you can handle this process successfully with your patients.

Listen to parents

In recent years, parents of young children have become increasingly aware of the need to monitor traditional developmental milestones at each well visit prior to age three, due in large part to the popularity of the What to Expectseries, the Touchpointsbooks, and other baby books currently available. Parents expect to have a dialogue with their child’s physician about development, though even these highly regarded books do not cover social, emotional, and communication milestones well enough. Nor do they address behavioral problems.

A recent national survey of parents with young children indicated that they want more information and support on childrearing and developmental concerns, yet pediatric clinicians often fail to discuss non-medical concerns with them .Moreover, detection rates in primary care show that 70% of developmental disorders and 80% of mental health problems are not caught.These discussions could yield developmental concerns early, since parent report has been shown to be highly accurate and indicative of a true concern

Because parents are with their children around the clock, they are well positioned to be valid reporters about their child’s development. This, combined with routine observations and comparisons of other children is very powerful. This cuts across all populations: income, education, social level, culture, etc. A physician can make great use of these observations at a well child visit where the average time for a professional to observe a child is only 15 minutes on average. Thus, a collaborative parent/physician relationship is critical to the continued healthy development of a young child.

When you have concerns about a child, remember, this is a family you anticipate having a professional relationship with for the next 18 years. It's important to develop the ability to say, 'Okay, this is a problem you're experiencing, I'm going to take it seriously. I may not agree with you that it's developmental; I may think this is more of an emotional or family problem, but you're telling me it's a problem, and I'm going to do something about it.”

Understand that early identification and intervention are essential

Early intervention’s positive outcome has been well-documented in the literature and goes far beyond IQ. In the short term, it improves the quality of life and functioning for the child and for the family. In the long term, early intervention’s impact extends into such key developmental areas as prevention of secondary emotional/behavioral issues, reduction in teen pregnancy, increase in high school graduates, increase in employment, and reduction in the crime rate.

Pediatric clinicians are in a unique and central position to identify developmental concerns early and refer children at risk on for further evaluation and treatment. Parents depend on pediatric clinicians for advice, guidance, and support. They need healthcare professionals who can speak the language of development with them and work with them to keep their child on a healthy developmental path.

"I would advocate a preliminary developmental screening for all children. And if a parent comes in and has concern about a child, there should be an immediate discussion about it. If the pediatrician doesn't have time, it would be well for him to either have a person to whom he refers the family or for one of his staff to be able to sit down with the family for 15 minutes and make them feel heard. The risks of not doing that are enormous in that the first few years of life are the period of the greatest neuroplasticity and the greatest rate of change in brain development. This is a critical period. If we miss this critical period, we could miss the boat on helping a child to develop to his or her fullest potential.

Consider the prevalence of developmental delays and disabilities

Prevalence studies indicate that autism spectrum disorders are dramatically on the rise with the CDC citing 1 in every 166 children on the autism spectrum and developmental disorders representing 17% of young children.

Thus, every pediatric professional can expect to see at least one patient in his/her practice (if not more) that lives with these concerns. This makes it essential for medical practitioners and clinicians to understand the key social, emotional, and communication milestones and to have a firm grasp of red flags.

"The findings now from very large prevalence studies show that 16 to 18% of children have developmental problems. That's one in every five patients or so, especially if you include the more serious mental health problems. One out of every five patients that you run into will be experiencing a developmental's a huge concern. It's probably the biggest single issue that you encounter in pediatrics and, yet, it is just a fraction of pediatric training

Heighten your “index of suspicion

Simply by making developmental surveillance a regular part of every office visit, you can sharpen your observations, elicit better information from parents, and heighten your index of suspicion.

Suspicions are eliminated or confirmed through the screening process first by using a broad-based developmental tool and then, if concerns persist, by narrowing the focus through a level-two tool (e.g., autism or Asperger screen). Pediatric physicians’ observations enhance and strengthen the accuracy of screening tool measures. Physicians can use the developmental surveillance and screening processes to increase the chance of detection during very early development and provide a clear compass for referral and treatment if a concern is flagged. By listening closely to parent report during the surveillance process, physicians may be prompted to start the developmental screening process at any time a concern arises as a result.

"Physicians need to have an index of suspicion. And they need to listen to parents. Even when I was a resident back in the dark ages...there was this whole idea about being an overanxious mother. I don't think I've ever seen a mother that I thought was overanxious. You're usually anxious for a reason and if there is a reason, you need to know what that reason is. So if they've got a busy schedule, it would be appropriate when Mrs. Jones comes in to say, 'Mrs. Jones, I really don't have time today, but let's make an appointment, I'll stay late on Thursday, why don't you drop by and let me hear more about that problem.' The parent needs to be validated, and you, the physician, need to hear the story in more detail. Without that, I don't think you have a clue, frankly”

Make each well-visit an opportunity for screening and surveillance

In response to the increasing number of young children affected by these disorders, leading medical organizations have issued policy statements that provide specific guidelines toward the routine screening and surveillance of developmental delays and disorders, including autism. By making routine screening a regular part of pediatric practice, physicians can channel parent concerns efficiently, reduce over or under referrals, and accurately validate reported concerns and observations.

"Ask the parent how little Johnny or Susie lets them know what they want and listen carefully for the explanation. If at 12 or 14 months little Johnny or Susie simply cries or wants the parent to guess what he or she wants, but can't use purposeful signaling, such as taking them by the hand or pointing to indicate wants or desires, that's a warning sign. Also, observe yourself. Try to observe a few minutes of free play. You don't have to make a diagnosis, you just want to be alert”

Create a screening training and implementation plan

To make screening and referral a routine part of pediatric practice, it will require planning, training, and implementation. First, if you have someone on staff who is already a champion for children with special needs, get that professional involved in creating an atmosphere of enthusiasm and excitement as an advocate of positive change. Train all staff members, including front office staff. Not getting all suitable staff on board can make or break a program. Host a meeting with local service providers and office staff to build relationships and establish collaborations. Plan and implement a smooth office process for storing, disseminating, tabulating, and replenishing screening questionnaires and referral notes. Arrange to have trained staff available who can interview or interpret questionnaires for those parents who cannot fill out the forms without support. Stock exam rooms and the front office with patient education materials related to these disorders for easy access. Keep contact information on hand for quick referrals to local service providers and diagnostic services.

Lastly, look at how other model pediatric programs are meeting this challenge. One excellent example is the Health Steps program, an approach that designates a trained staff member to be a developmental “Healthy Steps” specialist who regularly addresses issues around child development and behavior. To be sure, innovation can lead to a successful implementation of a screening and referral program. But plain old-fashioned planning and execution can be all that is necessary to get started.

Deliver difficult news to parents with sensitivity and understanding

We have provided links to many excellent journal articles that discuss how to deliver difficult news to parents in our Reference section below. In addition to these sources, we have provided our own advice for how to approach the difficult conversation of delivering bad news. It is important to remember that positive outcomes of these discussions between a physician and parent will set the tone for how the parent views their child in the future, how satisfied they are with the physician/patient relationship and how positively they view their roles as parents in the years to come.

1. Set the stage for a successful conversation.

Often, these difficult conversations take place in the physician’s office immediately following a screening. However, if your schedule does not allow adequate time to hold this conversation, schedule a follow-up visit as quickly as you can. Choosing the right time and place for a conversation to share your concerns is very important. And allowing sufficient time with no interruptions is critical. Understand that emotions may be unpredictable. Be ready to listen and offer help through the referral process.

2. Start with parent observations, questions, or concerns.

It’s important to assess where a parent stands in relation to understanding his/her child’s development before sharing your own professional concerns. The parent may already sense a problem and just not have the words to articulate it. Gently probe and ask questions that will allow a parent to share their own observations, questions, or concerns first. Then share your own observations and screening results in a very neutral manner. By doing so, you will open an exchange and may even validate a parent’s hidden concerns and fears.

3. Put yourself in the parent's shoes. Be supportive.

Some of the most memorable conversations that parents of children with special needs report are those that take place at the critical moment a first concern is expressed. An empathetic approach goes much further in establishing trust and understanding than a clinical or professionally-detached one. Your tone and manner should be open and available. Whatever the outcome, in the long run, the parent will remember and appreciate your discussion if it is framed in a caring way.

4. Focus on the need to "rule out" anything serious.

By referring for further evaluation, it opens up the opportunity to “rule out” as well as “rule in” the concern. If concerns are ruled out, parents can rest easy. If concerns are confirmed, then seeking help through evaluation and referral will help to get the child back on a healthy developmental path. No harm can be done by checking out concerns. Things can only get better.

5. Refer parents and caregivers to other resources. Some parents need to come to this understanding on their own.

It is also a good idea to give the parent something descriptive to read about the disorder in the quiet of their homes. Seeing disabilities described in writing, whether through literature or on the Web, allows a parent to make the match with his/her own child’s behaviors and needs. It provides an objective description of common features and allows the parent to come into recognizing developmental concerns at their own pace. Often, when a parent is in denial, reading something that describes their own child’s behaviors closely can be the catalyst for progress.

6. Emphasize the importance of early identification and intervention.

One way to look at developmental concerns is that if a child had signs of a serious and persistent physical illness, like asthma, you would want to get it checked out as soon as possible to rule it out. If there really were a problem, it would only make it worse by not doing so. Developmental delays are no different. By not receiving timely interventions for concerns around language, behavior, and social connectedness, the problems will not go away, but will worsen over time. And what’s most hopeful is that early intervention works, improving life in the long and short term for both the child and the family. So life will get better once interventions are underway.

7. Be confident that sharing your concerns is always the right thing to do. The hardest part is finding the right words to get started.

Try role playing what you will say first. Express what you have observed that gives you concern in a caring and supportive way. By doing so, it may lower your own anxiety and give you the confidence to have a heart-to-heart with a positive outcome. Do not be afraid about hurting the relationship with the family. If you present your concerns in a positive and caring way, you will build trust. The bottom line is that the earlier a developmental concern is identified and treated, the better the outcome.

Narrow the gap between knowledge and behavior

There is much currently being published in medical literature about the gap between knowledge and behavior in practice. Physicians are more knowledgeable than ever about autism due to increase in awareness campaigns, media attention, and funding for research studies. So why is there still a gap between knowledge and practice? And why don’t many physicians screen?

Physicians cite many challenges that may influence their decisions on whether or not to screen routinely in practice. Among these are:

  • Lack of training
  • Lack of time
  • Lack of reimbursement by insurance companies
  • Physician perceptions about fears and benefits of screening
  • Breaking bad news to families
  • Concerns about over referrals
  • Lack of confidence in results of early intervention

However, in spite of the perceived challenges of screening, two conditions have been shown to influence a physician’s willingness to act when a developmental concern is indicated: a sense of urgency and a level of certainty

If one considers the latest information about early brain plasticity and the very powerful influence of early intervention on the developing brain, a sense of urgency is an absolute must whenever a parent expresses a developmental concern. The use of validated screening tools in practice strengthens a clinician’s level of certainty by providing a measure of confidence to make the referral for further evaluation.

Follow up with referrals; Progress can be made

It is important to have on file contact information for local agencies, services, and specialists where families can go to for help during the referral process. Oftentimes, physicians may not know of local resources that are available or may not be satisfied with the caliber of these services. Take the time to find out for the future of your patients. Once you have made the appropriate referrals, be sure to follow up with families to see how they are doing. Progress will be made with the proper supports and services in place. The process starts with you.

"One of the greatest joys out of all this is the day that the child shows up— you've delivered the bad news six months ago and the family's done what you've told them to do—they come back in and you've got a child who's looking at you. Now he's developing words and play skills are beginning to expand. The parent looks terrific and the kid looks terrific and you're saying, 'wow, this is terrific, this is really great stuff'.">

Sharing Concerns Parent to Parent

Many friends, relatives, or caregivers may have concerns about a child’s development, but are unsure of how to raise the issue with the parents. It is crucial to pursue any concerns, to ensure early and appropriate interventions; however, it can be difficult to do so.

Drawing on the experience of parents, this essay also provides a list of Do’s and Don’ts, such as:

  • Listen to the child’s parent, start with their observations or concerns
  • Always be supportive, never judgmental
  • Avoid jargon, labels, and terminology
  • Keep it positive; emphasize ‘ruling out’ anything serious

No parent wants to hear concerns about a child, particularly regarding a child’s development. All parents naturally want to protect their child. But, if a child isn’t meeting developmental milestones, or is exhibiting one of the absolute indicators or “red flags,” it is crucial that the child be properly screened. In order for this to happen, many friends, grandparents, and clinicians find themselves in the unenviable role of having to discuss developmental screenings with a parent.

Developmental delays and disorders are still poorly understood by much of our society. Few people understand the range of developmental disorders, let alone the opportunities for treatment and intervention. Many of us may recognize the differences in the physical features of children with Cerebral Palsy or Down Syndrome; however, we often aren’t aware of more subtle “hidden disorders” such as autism and how they present themselves in babies and toddlers.

The lack of knowledge about developmental disorders is further compounded by stigma. Sadly, what is not understood is often feared. This fear may prevent a parent from pursuing questions or concerns about a child’s development. This fear may also prevent those close to the parent—caregivers, grandparents, or friends—from sharing their concerns.

Some caregivers, and even clinicians, may have concern about “labeling” a child. A diagnosis doesn’t have to be a “label” —an appropriate diagnosis may describe a child’s challenges, but should never define a child. If a child is experiencing developmental delays, the specific diagnosis enables that child to have access to the most appropriate educational programs and therapies, such as occupational, speech, and physical therapy.

Early identification and intervention complement the core values of parenting: to seek to understand each child as a unique individual and to meet each child’s distinct needs in order to prepare them for adulthood. A child, who is more fully understood, with respect to his/her individual strengths and weaknesses, will have a better quality of life. The goal is simply to help every child reach his or her fullest potential.

If you are concerned about a child’s development, and want to bring it to the attention of the child’s parent, here are a few Do’s and Don’ts:


1. Set the stage for a successful conversation.

“My mother invited me to go for a long walk to tell me what was concerning her about my child. It confirmed my own suspicions. After, we had a long cry for ourselves over it.”

Choosing the right time and place for a conversation to share your concerns is very important. Try to speak in person at a time when there will be no interruptions. Arrange to meet in a private setting. Dedicate as much time as you need to have a full conversation. Understand that emotions may be unpredictable. Be ready to offer help.

2. Start with the observations, questions, or concerns of the child’s parent:

“It is critical to respect a parent’s perspective; begin with a clear understanding of whether or not they may have concerns, and what those might be.”

It’s important to assess where a parent stands in relation to understanding his/her child’s development before sharing your own concerns. The parent may already sense a problem and just not have the words to articulate it. Gently probe and ask questions that will allow a parent to share their own observations, questions, or concerns first. Then share your own observations. By doing so, you will open an exchange and may even validate a parent’s hidden concerns and fears.

3. Put yourself in the parent’s shoes. Be supportive, not judgmental.

“If you want to talk to a parent, please say it in a loving way. It might be good to begin by making a positive comment about the child’s strengths and by reinforcing the parent’s skills, love, and dedication to the child.”

Some of the most memorable conversations that parents of children with special needs report are those that take place at the critical moment a first concern is expressed. An empathetic approach goes much further in establishing trust and understanding than a judgmental or emotionally-closed or -charged one. Your tone and manner should be open and available. Whatever the outcome, in the long run, the parent will remember and appreciate your discussion if it is framed in a caring way.

4. Focus on milestones, absolute indicators, and the need to “rule out” anything serious.

“It is such an emotional subject, with so little that made sense. Milestones made sense to me.”

Give the parent something positive to read (see our developmental checklist of hallmark milestones and red flags). The checklist gives parents something to think about and consider, but never puts a label on it. It gets the conversation started with the child’s physician and provides specific information about strengths and areas of challenge.

5. Refer parents and caregivers to other resources. Some parents need to come to this understanding on their own.

“I remember seeing a Web site that seemed to describe many of my son’s unique and, frankly, troubling behaviors. As much as I wanted it to be wrong, the more I read the better I understood that something was going on.”

Seeing developmental disorders described in writing, whether through literature or on the Web, allows a parent to make the match with his/her own child’s behaviors and needs. It provides an objective description of common features and allows the parent to come into recognizing developmental concerns at their own pace.

6. Emphasize the importance of early identification and intervention.

“Early intervention is the key. Tell the parent that the earlier you catch a child, the easier it is to help the child...if you let it go too long, it just takes that much longer for the child to gain ground.”

One way to look at developmental concerns is that if a child had signs of a serious and persistent physical illness, like asthma, you would want to get it checked out as soon as possible to rule it out. If there really were a problem, it would only make it worse by not doing so. Developmental delays are no different. By not receiving timely interventions for concerns around language, behavior, and social connectedness, the problems will not go away, but will worsen over time. And what’s most hopeful is that early intervention works, improving life in the long and short term for both the child and the family. So life will get better once interventions are underway.

7. Be confident that sharing your concerns is always the right thing to do. The hardest part is finding the right words and getting started.

“When my son was 18 months old with no language, a friend said that I should march him right down to the pediatrician’s office. I have to admit I was a bit offended but when I found out her advice was right, I thanked her. Most people would just sit back on their hands and not say anything. Her delivery lacked some tact, but she got me going.”

Try role playing what you will say first. Express what you have observed that gives you concern in a caring, supportive way. By doing so, it may lower your own anxiety and give you the confidence to have a heart-to-heart with a positive outcome.

8. By sharing your concerns, you may help to validate what a parent is afraid or unable to express.

“I felt comfortable in my denial. I just thought ‘oh, this too shall pass.’ But when my sister expressed her concern, it articulated what I was too afraid to say. Every now and then I need someone to shake me out of my comfort zone and get me moving.”

Often a parent may have a nagging and persistent subliminal fear that something is indeed wrong developmentally, but they may be afraid to say it out loud. All they may need is to hear the same concern from someone else to confirm their suspicions. These outcomes are usually described by parents as bringing them relief. Now they don’t feel so alone. It provides the impetus to take the next step for their child.


1. Don’t dismiss a parent’s concerns.

“Just listen and observe. Take the time to listen to the parent and observe the child before you do, or say, anything.”

If a parent shares concerns with you directly, you have a unique opportunity to help them. Listening is often all that is needed to help parents channel their concerns into words and actions.

2. Don’t compare one child to another. Each is unique.

“I’ve heard the story about how a child had no language and then one day, started to speak in volumes, almost miraculously. I’ve heard about Einstein being a late talker as another way to comfort me. Although well-meaning tales, they did nothing to help me move forward to help my child. They only prolonged my self-doubt.”

Often family and friends will share a story meant to give comfort to a parent that gives an anecdote of someone else who struggled with early developmental concerns, only to outgrow them in a dramatic or famous way. Instead of having the intended effect of providing comfort and ruling out concerns, parents often sense that they do not address their child’s unique concerns and dismiss them. Or they may provide more insecurity to a first time parent who is already experiencing self-doubt. Either way, anecdotes are not useful. It is more important to think about the particular child in question.

3. Don’t use labels, technical jargon, or loaded terminology.

“When the teacher at my son’s preschool said that he ‘needed Special Education,’ I thought she meant that she thought he was mentally retarded; I just shut down. Similarly, when my doctor told me she’d ‘Seen kids like him before’, I stopped listening.”

It’s probably too scary to mention a specific disorder to a parent right out of the gate. Many disorders are misunderstood and just the mention of them can bring up great fear in parents who may shut down. Sometimes giving a parent an article or book to read is enough to make the connection.

4. Don’t scare a parent: keep it positive.

“I told my doctor that my daughter’s daycare provider had some concerns about her, but I disagreed. ‘Wasn’t it OK for a child to be a little bit different? Why label?’ I’ll never forget my doctor’s simple, steady words: ‘Just get it checked out, just rule it out. You have nothing to lose.’ She was right. If it hadn’t been for the extra help my son got by being identified at such a young age, he—actually, WE—would never be doing as well today.”

If a parent is encouraged to see their pediatrician with developmental concerns about their child, there will be one of two outcomes, but each will have its positive aspects. If concerns are ruled out, parents can rest easy. If there are indeed confirmed concerns, seeking help through evaluation and referral will eventually get the family back on a healthy developmental path.

No harm can be done by checking out concerns. Things can only get better.

This is a positive message that family and friends can share with parents to encourage them to seek help.

Sunday, April 15, 2007

Long Self-Test For Irlen Syndrome

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Please fill out this form. Parents, complete the form in cooperation with your child.

Name Age Grade
Address Phone

Completed by Date


Are you light sensitive?

Yes No
Bothered by sunlight
Bothered by glare
Bothered by bright or fluorescent lights
Tired or drowsy under bright or fluorescent lights
Become anxious under bright or fluorescent lights
Get a headache from bright or fluorescent lights
Feel antsy or fidgety under bright or fluorescent lights
Harder to listen under bright or fluorescent lights
Performance deteriorates under bright or fluorescent lights
Feel like there is not enough light when reading
Feel like there is too much light when reading
Read in dim light
Use fingers or other marker to block out part of the page
Shade the page with your hand or body

Types of reading difficulties:

Yes No
Skip words or lines
Repeat or reread lines
Read for less than one hour
Lose place
Read in a “stop and go” rhythm
Omit small words
Poor reading comprehension
Reading becomes harder as you continue
Avoid reading
Avoid reading for pleasure
Rereads for comprehension
Reversals of letters and/or numbers

While reading or using a computer, do you:

Yes No
Rub eyes
Move closer to or further away
Open eyes wide
Incorporate breaks
Change position to reduce glare
Close or cover one eye
Move head
Read word by word
Unable to speed read

Do you feel strain, fatigue, tired, or have headaches when:

Yes No
Doing paper and pencil tasks
Working on the computer
Watching TV, movies, or live stage productions
Copying material
Doing math assignments
Playing video games
Writing long assignments
Doing visually-intensive activities like needlepoint, sewing, cross stitching, crossword puzzles, woodworking, soldering, etc.
Working under bright or fluorescent lights
Looking at stripes, patterns, bright colors, and high contrast


Yes No
Write up or down hill
Unequal or no spacing between letters or words
Unequal letter size
Unable to write on the line
Leave out words, letters, or punctuation marks


Yes No
Problems concentrating with reading or writing
Easily distracted when reading or writing
Easily distracted when listening
Easily distracted when taking tests
Daydreams in class or at lectures
Problems staying on task
Problems starting tasks
Difficulty with scantron answer sheets


Yes No
Lose place (book, chalkboard, whiteboard, overhead)
Leave out words (book, chalkboard, whiteboard, overhead)
Slow (book, chalkboard, whiteboard, overhead)
Incomplete (book, chalkboard, whiteboard, overhead)
Careless errors (book, chalkboard, whiteboard, overhead)
Blink or squint (book, chalkboard, whiteboard, overhead?
Difficulty refocusing
Difficulty copying things onto or off computer or typewriter

Composition/Essay Writing:

Yes No
Problems with punctuation
Problems proofreading
Leave out letters or words
Write without rereading


Yes No
Misalign digits in number columns
Difficulty seeing numbers in the correct column
Sloppy or careless errors
Use finger, graph paper, or other marker when working with columns of numbers
Difficulty seeing signs, symbols, numbers, decimal points
Reversals of numbers


Yes No
Problems sight reading the notes
Prefer to memorize rather than read music
Prefer to play by ear
Use finger to track notes
Lose your place
Trouble reading the notes or notes and words together
Difficulty interpreting the music notations
Little progress in spite of regular practice

Depth Perception:

Yes No
Difficulty getting on and off escalators
Bump into table edges or door jams
Difficulty walking up and/or down stairs
Difficulty judging distances
Drop or knock things over
As a child, accident prone or have bruises on your shins
When walking next to someone, do you drift into the person
When walking, do you feel dizzy or light headed
Difficulty getting on or off moving objects


Yes No
Difficulty parallel parking
Do you feel like you will hit the car in front when parking
When parking, do you hit the curb or leave too much space
Difficulty judging when to turn in front of oncoming traffic
Uncertain about making lane changes
Extra cautious when making lane changes
Are the passengers tense when you make lane changes
Do passengers tell you that you tailgate
Are you overly cautious, leaving extra room between you and the car ahead

Sports Performance:

Yes No
Problems tracking a flying ball like golf, baseball, or tennis
Trouble following the ball when watching sports on TV such as tennis, football or basketball
When watching sports on TV, can you follow the ball but not see anything else
Trouble catching or hitting a ball
Difficulty playing pool
Difficulty hitting the ball when playing baseball or tennis
Trouble learning how to ride a bike
Trouble jumping rope? Jump in at the wrong time or jump into the rope
Trouble playing games such as volley ball or four square
On playground equipment such as rings or bars, was it hard to go from one to the other

Fatigue While In A Car:

Yes No
As a passenger, do you become drowsy
When driving, do you become drowsy
Bothered by glare on the chrome on cars
Bothered by glare off the rear window of the car in front of you
Bothered by headlights and street lights at night
Avoid driving at night
Have night blindness
Bothered by red tail lights on cars
Bothered by red stop lights
Stressful to drive in the rain (glare)

Scoring: If you answered yes to three or more of the questions in any one of the above sections, then problems in these areas may be helped with Irlen Colored Filters. The higher your score in a section, the more this area is a problem. Click on "Find an Irlen Testing Center" for a certified Irlen practitioner near you.