HELP FOR PARENTS OF CHILDREN WITH ASPERGER'S & HIGH-FUNCTIONING AUTISM

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Preparing Your Aspergers Child for Transition to Middle-School

Parents who have children that will attend middle-school for the first time in the fall of this year need to initiate preparations pronto!

Another school year is quickly drawing to a close, and for some students, this is their last year of elementary school. This is not necessarily good news for children with Aspergers and High Functioning Autism (HFA). Why?

First, THE most difficult transition for most students (Aspergers or not) is that of going on to middle-school. This is largely due to the fact that, for the first time in the student’s life, he/she will have several teachers AND a much larger school population to contend with. Gone are the days where the child enjoyed having only one familiar teacher and only one relatively small classroom.

Second, children with Aspergers and HFA have difficulty with transitions in general – especially one this dramatic.

In general, a child’s intrinsic motivation toward school (i.e., the desire to do schoolwork for its own sake rather than for an external reward) has been found to decrease with age. Intrinsic motivation especially drops during transitions between schools (e.g., from elementary school to middle-school). In other words, children may get a great deal of pleasure from doing science projects in the 5th grade but feel like they are doing a project "just to do it" in the 7th or 8th grade.

After entering middle-school, children tend to get lower grades than they did in elementary school. This drop does not seem to occur because of any cognitive or intellectual changes. In fact, children perform just as well on standardized tests after entering middle-school as they did before. It also does not seem that grading becomes more difficult after the transition to middle-school. Therefore, a child’s lower grades seem to reflect an actual change in how he is performing during middle-school as compared to elementary school; he appears to place academics at a lower importance than he did earlier in his life.

Also, children perceive themselves to be less academically competent in middle-school than they did in elementary school. Over the course of just one year, many Aspies begin to lose belief in their own academic abilities, and a sense of low self-esteem kicks-in. This finding is important because children who think that they can do well in school are more likely to actually perform well. Oddly enough, the strongest children seem to experience the biggest drop in belief about their abilities over the middle-school transition.

Research has shown that Aspies are less interested in school, perform more poorly in their classes, and see themselves as less academically capable during middle-school than during elementary school. Figuring out why these negative changes occur is not easy and is the subject of ongoing research. There are probably many developmental reasons for the changes (e.g., shifting interests, the beginning of distracting bodily changes, bullying, sensory sensitivities, a larger building to navigate, more peers to try to relate to, being ostracized from "the peer-group" if you can't "fit-in" or be "cool," etc.). In addition, there seem to be increasing demands from educators and moms and dads for Aspies to get good grades rather than to simply enjoy the learning process. But exactly how much each factor affects children remains unclear.

Many of the factors that affect Aspergers and HFA children during the middle-school transition are beyond the parent’s control. Still, the parent can play a role in keeping the Aspie engaged in school. For one, parents can continue to emphasize the importance of "love of learning" during the middle-school years. Parents do this naturally during elementary school when grades are less prominent and important, thus they should keep up a similar attitude after the transition.

Second, parents can encourage their youngster to realistically assess her academic abilities. As mentioned earlier, strong children tend to stop believing in themselves most of all after the transition. Parents’ supportive words can help children remember that they are competent.

Lastly, simply keep these findings in mind. Recognize that the middle-school transition is difficult and that your Aspie may show signs of less school engagement after the transition. Try to be understanding of the challenging changes he/she is facing, and know that with some time and support, his/her passion for learning will hopefully reignite.

To help your Aspergers youngster adjust, begin discussing the types of changes he can expect long before that first day of class. Take your time and be there to answer any questions your youngster might have. 

Here are a few tips parents can take to prepare their youngster for the challenges and benefits of middle-school:

1. Many Aspies may worry about finding their classes, opening their lockers, or dressing for gym class. Address the youngster's fears one by one, and point out that everyone in her class is new to the school and the school rules. Also, point out that many of her fears will be addressed at an open house or school orientation. In the meantime, spend a little time showing your Aspie how to use a locker combination and offer tips on getting to her classes on time.

2. There are a number of books on the market that can prepare your youngster for the adjustments of middle-school. Some are very specific, written exclusively for Aspie boys or Aspie girls. It's not a bad idea to make an investment in one of these resources. They may even help you better understand some of the challenges your youngster will face, and that can help you help your Aspie. A good eBook on the market is Teaching Social Skills and Emotion Management.

3. You may want to begin giving your Aspie a little independence once she starts middle-school. For many families, it's during the middle-school years when kids may be left home alone for the first time. This milestone should be approached carefully and with much consideration and preparation. Take time to transition your Aspie from constant supervision - to home alone, and check-up on her periodically to make sure she's using her time alone wisely.

4. Homework during the middle-school years tends to increase, and moms and dads can often find themselves unable to help with specific subjects. But they can still do quite a lot to help their kids tackle homework assignments and complete class projects (e.g., setting up an environment that helps your middle-schooler concentrate on homework in order to complete it quickly; keeping a family calendar in order to track special assignments and projects and keep your middle-schooler organized, etc.).

5. Many changes take place during the pre-teen years, and your youngster probably has questions or concerns about all of them. Discuss some of the changes your Aspie will likely encounter, and role-play how to deal with some of the more difficult challenges. For example, your Aspie will likely encounter new school-rules when she begins middle-school. What should she do if she breaks one of them accidentally? How should she respond?

6. Touring your youngster's new school is a wonderful way to answer any questions your Aspie might have about middle-school and ease any anxieties. A tour will show her where she can find all the places she'll have to go in the course of the day (e.g., gym, cafeteria, locker, etc.), and that will give her a sense of confidence on her first day.

7. Bullying tends to peak in the 7th and 8th grade and diminish slightly every year after. Unfortunately, most Aspies will encounter bullying at some point during middle-school. The best way to protect your youngster is to sit down and discuss behaviors common in middle-school (e.g., bullying, experimenting with tobacco, etc.). Aspies who are being bullied may try to hide the fact from family members or educators, so be sure you know the signs of bullying in order to take quick action.

8. The idea of moving up to middle-school can be scary for some kids. But it's important that children understand that middle-school offers many benefits and opportunities. Talk to your child about all the organizations and clubs she'll be able to join, as well as the independence that comes with being older and more mature. Point out all the opportunities your youngster's school offers, and encourage her to become involved right away, when everyone in her class is just as new to the school as she is.

Teaching Social Skills and Emotion Management

Place-Blindness in Individuals with Aspergers and High-Functioning Autism

Some children and teens – and even adults – with High-Functioning Autism and Aspergers frequently become lost because they can't remember previously seen places. An estimated 33% of people with Aspergers suffer from “place-blindness” (also called topographic agnosia), which causes them to become lost easily. This can happen even in areas they know very well if a familiar landmark has changed.

Place-blindness is a form of “visual agnosia” in which the individual can’t rely on visual cues to guide him directionally. However, he may still have an excellent capacity to describe the visual layout of the same place or location. People with place-blindness may have the ability to read maps, but often become lost in familiar environments.

A person with place-blindness could live in a neighborhood for years and not recognize local houses if he sees them out of context (e.g., a photo featuring the house on its own). When out on a hike, the place-blind child or teen may remember certain landmarks (e.g., a bridge, waterfalls, fallen tree, etc.), but otherwise be unable to find his way around the woods even on a route he has traveled many times.

Place-blindness can be extremely maddening. Even some adults with Aspergers may frequently take wrong turns and arrive late for appointments and social engagements, which cause them to appear inconsiderate or forgetful. In addition, they don’t have the option of changing their usual routes or trying new shortcuts without the risk of getting lost. Place-blind people tend to rely on specific landmarks (e.g., a billboard, telephone booth, a tall tree, etc.), but they may become lost even on a familiar route that has been traveled many times.

Place-blindness may occur in conjunction with “face-blindness” (also called prosopagnosia), but many Aspies with place-blindness have very good face recognition skills, thus, having one condition doesn’t necessarily mean that the person will have the other. Both conditions run in families, suggesting a genetic component. While many place-blind individuals have a poor directional sense or impaired map reading ability, some are strong in these skills and have only impaired place or landmark recognition.

Coping techniques for place-blindness:

1. Alternate cues may be particularly useful to a person with place-blindness. Alternate cues may include color cues or tactile markers to symbolize a new room or to remember an area by.

2. Check out any new areas that you will be traveling to beforehand to see if there is a nearby cafe or other place you can wait if you don’t get lost and end up arriving early.

3. If you have strong map-reading skills, bring a map everywhere you go.

4. If you will need to travel a new route in the near future and it is very important to arrive on time, do a dry run beforehand and commit as many landmarks to memory as possible to lower the risk of getting lost.

5. Leave early for appointments whenever possible so that time for getting lost is factored in.

6. Make a point of actively memorizing landmarks that are unlikely to change or be removed.

7. Memorize route directions (north, south, east, and west) and numbers of blocks, and carry a compass to assist with navigation.

8. Naming landmarks out loud or thinking about their features verbally may help in committing them to memory.

9. Use a global positioning system (GPS) device to obtain directions.

10. Using verbal descriptions of routes to and from a particular destination may be helpful as well.

The Aspergers Comprehensive Handbook

Oral Sensitivity in Children with Aspergers and High-Functioning Autism

"My son with aspergers (high functioning) will often have a gag response or a strong reaction to certain textures of food, for example, whenever he tries to eat an apple or any other hard fruit. Is this something we should be concerned about, or is it a trait of aspergers (similar to picky eating)?"

In contrast to motor-based swallowing problems, difficulties with eating can also stem from dysfunction with the sensory system. The act of swallowing does require both motor and sensory functions to complete the act.

All of us have a range of sensory tolerance, some of us more sensitive than others. If you have a low sensory threshold, you may have an affinity for stronger tasting foods or perhaps crunchy foods. Conversely, if you are on the other end of the sensory spectrum, you may prefer milder foods or soft foods. Kids also have taste and texture preferences and tend to prefer milder, simple foods.

Hypersensitive oral reactions are exaggerated responses to touch in the mouth or around the face. Younger Aspergers and HFA kids with hypersensitive oral reactions may not let you into their mouths for feeding, tooth brushing, or play. They may have problems moving from one food texture to the next, spitting out or gagging on any food but puree. They may gag when a spoon touches the tip of their tongues. A tiny lump of food may be gagged on instead of swallowed.

The following are red flags for sensory-based eating difficulties:
  • Able to bite and chew solid foods, but not swallow them
  • Gag on foods that require chewing
  • Hypersensitive gag only with solids and not with liquids
  • May try to swallow foods whole to avoid contact for chewing
  • No problems with taking liquids
  • Will separate textures from smooth food and pocket or expel them

Some kids become so sensitive and emotional, that their reactions go one step beyond hypersensitive and become “aversion reactions” (these are stronger, more emotional, and less logical reactions). These kids may cry, fuss, pull away, push food away, or refuse even to let you near their mouths. Gagging may turn into vomiting in an aversive reaction.

Fears can develop around eating or any touch around the mouth. Aspergers and HFA kids may try to control all aspects of a meal in an effort to protect themselves from uncomfortable situations. They may want only certain food textures, certain spoons, certain plates, and certain cups. Moms and dads become frustrated because their youngster will eat only a few foods prepared in very specific ways. Face washing and tooth brushing can seem impossible.

For most Aspergers kids, mouth hypersensitivity is one part of an overall body sensitivity to touch or changes in touch. These kids have a hard time handling touch on other parts of their bodies as well. Therefore, treatment for the face and mouth needs to be part of a treatment plan of relaxing or desensitizing touch reactions throughout the body

Because most hypersensitive kids have body as well as mouth over-sensitivities, they may allow touch or cuddling only if it is their idea. If you try to approach them, they may push you away, or rub or scratch the spot. The touch may be quite agitating.

Helping your youngster handle deep pressure or firm touch is usually a good starting place. Light ticklish touch can be too over-stimulating. Massage can be an excellent activity for these kids. Deep pressure touch, given in an organized, predictable way can be very helpful with touch sensitivities. When your youngster can anticipate the touch, it makes it easier to handle. A variety of other firm touch activities may be described by your youngster's therapist.

Let your Aspergers youngster know that you are going to touch. Approach the youngster within his/her vision so that the touch is not a surprise. Often, touch is handled well if the youngster sees it coming. Kids seem to be able to "prepare" themselves for the touch and sometimes can react more appropriately. Also, your youngster needs to learn that touch around the face and in the mouth can be fun.

Remember that the mouth is the most sensitive part of the face. Start by touching places away from the mouth and work toward the mouth. Consider starting on the trunk or back of the arms, and make a game of moving toward the face. In this playful way, the game becomes a distraction, so your youngster isn't just worrying about the touch. You also are moving in a predictable fashion that is less scary.

Tips for helping your child accept touch:
  1. Kiss your youngster's face with the stuffed toy, and then let him/her kiss the toy or your face.
  2. Play face-touch games with stuffed toys and dolls.
  3. Playfully taking turns with touching can help your youngster handle play around the mouth.
  4. Tooth brushing with regular or electric toothbrushes can help
  5. Wipe the face regularly (slowly and softly) with warm cloths, using deep pressure. This can be calming to an over-reactive youngster.
  6. Singing is nice to combine with touch activities. The predictability of the tune helps your youngster prepare for the touch.

Eating involves many different types of touches that the parent needs to understand. The spoon, fork, and cup touch the lips as they bring food to the mouth. The food temperature is a touch. Food texture (e.g., lumpy, wet, thick, etc.) is an important touch of eating. Some kids remove food from the spoon with their teeth very rapidly, so that the spoon doesn't touch their lips. Try gradually keeping the spoon or cup at the lips longer. Use the youngster's most favorite foods for this activity.

Food temperature often can cause over-reactions. Remember that room-temperature foods tend to be easier to handle. Notice the temperatures your youngster handles easily. Make temperature changes very slowly and with foods the youngster likes.

When Aspergers kids over-react by gagging when you try to switch to thicker, more textured or lumpy foods, you probably need to make the transition more slowly. Aspies usually will do better moving from strained foods to thickened strained foods, to blended foods, to thickened blended foods, to thickened blended foods with tiny, very soft lumps. Remember, it is easier to hide lumps in thickened foods. They are much too obvious when presented with strained foods. Good food thickeners include cereal, dehydrated foods, instant potatoes, instant puddings, and ground cracker crumbs.

When you present new body or mouth touches or new food textures, always start with familiar touches or textures. Making games of the touching helps kids think that the touch or the eating or the new texture o" their idea. Move at your youngster's pace, but be persistent.

Provide crunchy foods, and separate textures during meals. Keep crunchy foods on hand for your sensory-sensitive youngster, as these foods facilitate an important "sixth sense" called proprioception, in which sensory feedback makes the child aware of movement and body position. Crunchy foods may help your youngster to develop better proprioception. Also, avoid mixing foods together that have conflicting textures, such as mashed potatoes and gravy.

A speech-language pathologist or occupational therapist (OT) that is trained in oral sensitivities can implement an oral-sensory treatment program to help desensitize the child and reduce the sensitive gag response to textures. Also, the therapist can assist the mother or father with activities to transition the child to age-appropriate textures and tastes of food. If the sensory problem is more pronounced or pervasive, an OT with a background in sensory integration can provide more involved sensory intervention. These therapies may need to be preceded by resolution of medical problems first, especially reflux, before treatment activities can have an effect.

Advice to parents with Aspergers kids who have sensory-based eating problems may include to avoid forcing the child to eat certain foods, maintain a routine mealtime, have at least one preferred food available each meal, and to have the youngster join the family at mealtime versus eating alone.

Aspergers and High-Functioning Autistic kids with hypersensitive reactions to touch in the mouth and around the face need extra help learning to handle the touches of everyday life, especially for eating. You do not have to struggle with this one alone. Your youngster's pediatrician, dietitian, or therapy team can work with you and your youngster to figure out the best way to help.

The Aspergers Comprehensive Handbook 


 COMMENTS:

•    Anonymous said... Great ideas.
•   Anonymous said... I have a grandson with aspergers and he has a strong gag reaction when he tries to take a drink of water or other liquid that he doesn't normally drink. He wants to try new foods but it's very difficult for him because the look and smell will cause him to gag. His Dr told us it's normal for asperger people. They are highly over sensitive to everything.
•    Anonymous said... I'd say it could be related to a trait, but he might just hate apples, don't worry too much, try cooking or juicing apples, my lad does love fruit and will eat a bag of apples in 10 minutes, but he gets a lot of vitamins from juice too (in those times when he just won't actually eat fruit)
•    Anonymous said... I'm not sure if it's an Asperger's trait, but I'm the same. That's why I get my vitamins by squeezing a lemon each day.
•    Anonymous said... Indeed it's a trait, the apple was just one example I'm sure. My son does that all the time, he has aspergers too.
•    Anonymous said… Have you got a slinky maker!! Thats awesome for hard food. My step son is sensitive to hard food and sound.. I bought the slinky n its made a world of difference. Maybe it might help you
•    Anonymous said… It could be a sensory issue. An occupational therapist can evaluate and help. My son with Aspergers eats apples and other hard fruits and vegetables all of the time.
•    Anonymous said… My 5 year old does it... Especially if she has fluff or hair around her while eating... Or if she dislikes the food smell or texture... It's just the sensativity issues
•    Anonymous said… My son has sensitivity to his teeth and can't have certain things touch his teeth it sends him into orbit. This has also created a problem with brushing
•    Anonymous said… My son has the same issue. Not with apples though. He eats them to the core. Lol but with other foods. It may be controversial but I force my boys to try foods wether they want to or not. It can be a very stressful moment at the table. All 3 boys have issues with food. But if I did not stay firm on the issue they would only eat chicken nuggets and fries. My pickiest eater is actually my one son who is not autistic. But my point is my 3 boys have a very developed pallet, especially for being autistic because I make them try foods and keep trying them. They learn to like them. I read somewhere it takes children 19 times to acquire taste to new foods. For all children. Not just autistic children. They put up a huge fight sometimes. They will sit at the table for a long time. They will gag and cry but I don't back down.
•    Anonymous said… My son with Aspergers also has a sensory problem....lots and lots of food issues. ex: chicken tender "ends" can't be eaten....he would prefer microwaved food over baked....mac n cheese can only be leftover, not fresh....
•    Anonymous said… This may sound odd .. But maybe it could signal an allergy? I have an extreme gag reflex to certain cheeses (some that I used to be able to eat) .. After some testing I found it was certain strains of mould that caused it. It was so bad with some cheeses that I would gag uncontrollably just being near them at work (I used to work in a grocery store).

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"Face-Blindness" in Children and Teens with Aspergers and High-Functioning Autism

Many children and teens with High-Functioning Autism (HFA) and Aspergers have difficulty recognizing the faces of those they don’t know well. Prosopagnosia, also known as “facial agnosia” and “face-blindness,” is a neurological disorder that makes facial recognition difficult or impossible. Research suggests that up to two-thirds of children and teens with HFA and Aspergers have difficulty recognizing faces until they have interacted with a particular person on a number of occasions.

Research into Facial Recognition—

Most research into the facial processing abilities of kids and teens with HFA and Aspergers has focused on the ability to read and accurately interpret facial expressions. Research on facial recognition difficulties among children with Aspergers has been sparse, but there have been a few studies conducted. Findings indicate that many of children with Aspergers have difficulty recognizing the faces of people they have only met once or interacted with a few times, but have no trouble recognizing those they know well.

One research study found that some individuals with Aspergers performed well on tests of facial recognition, whereas others showed significant deficits in this area. However, all Aspergers individuals performed better on facial recognition tests than those whose “face-blindness” resulted from other causes (e.g., genetic predisposition, illness, stroke, etc.). The performance of children with Aspergers (who experienced difficulties with facial recognition) fell somewhere in between neurotypical control subjects and typical “face-blind” subjects.

Resultant Social Problems—

Failure to recognize people one has met before can act as a serious social problem. A “face-blind” youngster may meet someone, have an interesting conversation, and then not recognize that individual when he encounters her again, which can lead to social embarrassment and anxiety, and make it more difficult to establish friendships. “Face-blindness” is especially problematic in the workplace when the employee is unable to recognize coworkers and supervisors.

In addition to failing to recognize peers, the "face-blind" individual may also experience false positives, believing that a stranger is a known person because certain memorized features (e.g., hairstyle, glasses, hat, etc.) are the same. This can lead to embarrassing situations whereby the “face-blind” youngster or teenager greets a stranger as though he were an acquaintance.

Theories—

It’s hypothesized that the lack of typical social skills associated with HFA and Aspergers may result from “face-blindness.” However, because some of those with Aspergers have normal facial recognition abilities, it is unlikely that social dysfunction prevents the development of such abilities. No significant differences in social skills have been found between “face-blind” Aspies and those with good facial recognition, which indicates that there is no correlation between social abilities and the ability to recognize faces.

Another hypothesis asserts that the inability to recognize faces may stem from a relatively low social interest in others and the avoidance of eye contact, which may necessitate looking away from faces and thus not developing a clear memory of their characteristics. If such behaviors begin in childhood, perceptual skills for remembering faces and their unique elements may not develop. This hypothesis claims that social skills deficits cause “face-blindness” rather than the other way around.

Yet another hypothesis regarding “face-blindness” in children and teens with HFA and Aspergers has to do with detail orientation. Aspergers create a tendency to fixate on certain characteristics of the face, and so the child may fail to see the face as a whole. Strangely enough, some research studies have found that those with HFA and Aspergers may be better able to recognize faces when they are upside down.

Difficulty Recognizing Peers—

“Face-blind” kids and teens don’t easily commit whole faces to memory in the way that most people do. Rather, they must rely on unusual features and other aspects of the individual to make an identification until they know that person very well. In extreme cases, facial recognition is never achieved, even for family members and close friends, but this is quite rare. Most children with Aspergers can recognize the faces of those they know well and are capable of developing strategies for improving recognition of peers.

Strategies for Coping with Face-Blindness—

Aspergers children and teens with “face-blindness” often rely on hairstyles, clothing, context (e.g., an area of the school where the peer is most commonly seen), and objects (e.g., an person’s car, glasses, cologne, etc.) to identify acquaintances. This is a good initial strategy, but it creates problems when the particular individual gets a haircut, adopts different styles of dress, gets contact lenses, or appears in a different context. Someone who can be recognized in one place (e.g., school) may be difficult to identify during a chance encounter at the Mall.

Tips for Children and Teens with Face-Blindness:

Here are some effective strategies for improving identification and reducing social anxiety...

• Pay close attention to hand gestures and facial expressions the individual makes frequently (e.g., how loudly he speaks, his body postures, other expressive features that could be used to identify him in the future). Focus on features that are u NOT likely to change.

• Spend time with an outgoing buddy or family member and arrange to have him greet others by name until you know them well enough to recognize them on your own.

• Choose a pleasant spot to sit and watch people, identifying characteristics of movement, facial expression, and other aspects that could be useful for identification purposes.

• Tell teachers and peers about the problem on first contact so that they will not feel insulted if you don’t recognize them at a future time. In some situations it can be helpful to tell a funny story about a time when you didn’t recognize someone. Having a laugh together can ease the tension of talking about the problem.

• When meeting someone for the first time, silently describe the face in your mind to commit features to memory (e.g., a full lower lip, a short nose, arched eyebrows, etc.). Note particularly any unusual or interesting features that will help make quicker identification in the future.

Parents can teach these recognition skills and strategies to their child and practice them together. It can also be helpful to tell the youngster's teachers about the problem and ask them to identify other students by name whenever possible, particularly early on in the school year.

Children with High-Functioning Autism: "Gifted" or Hyperlexic?

Parents who have discovered that their young child is "gifted" because he/she may be able to recite the alphabet at 18 months of age - or can read words by the age of 2 - may want to reassess the situation.

Hyperlexia often coexists with High-Functioning Autism and Aspergers. Hyperlexia is not seen as a separate diagnosis; however, with current fMRI research revealing that hyperlexia affects the brain in a way completely opposite to that of dyslexia, a separate diagnosis may be on the horizon.

Children with hyperlexia may recite the alphabet as early as 18 months, and have the ability to read words by age two and sentences by age three. Many are overly fascinated with books, letters, and numbers. However, the child’s ability is looked at in a positive light, so many moms and dads delay in getting their “precocious” youngster any help because they believe that he/she is a blooming genius.

Hyperlexia has many characteristics similar to Autism, and because of its close association with Autism, hyperlexia is often misdiagnosed. The main characteristics of hyperlexia are an above normal ability to read coupled with a below normal ability to understand spoken language. Many of the social difficulties seen in hyperlexic children and teens are similar to those found in Autism. Often, hyperlexic kids will learn to speak only by rote memory and heavy repetition. They may also have difficulty learning the rules of language from examples or from trial and error.

Hyperlexic kids are often fascinated by letters or numbers. They are extremely good at decoding language and thus often become very early readers. Some hyperlexic kids learn to spell long words (e.g., elephant) before they are two years old and learn to read whole sentences before they turn three.

Hyperlexia may be the neurological opposite of dyslexia. Whereas dyslexic kids usually have poor word decoding abilities but average or above average reading comprehension skills, hyperlexic kids excel at word decoding but often have poor reading comprehension abilities.

Some experts denote three explicit types of hyperlexics, specifically:
  • Type 1: Neurotypical kids that are very early readers.
  • Type 2: Kids on the autism spectrum, which demonstrate very early reading as a splinter skill.
  • Type 3: Very early readers who are not on the autism spectrum though there are some “autistic-like” traits and behaviors which gradually fade as the youngster gets older.

The severity, frequency, and grouping of the following symptoms will determine an actual diagnosis of hyperlexia:
  • A precocious ability to read words far above what would be expected at a youngster’s age
  • Abnormal and awkward social skills
  • An intense need to keep routines, difficulty with transitions, ritualistic behavior
  • Auditory, olfactory and / or tactile sensitivity
  • Difficulty answering "Wh–" questions, such as "what," "where," "who," and "why"
  • Difficulty in socializing and interacting appropriately with people
  • Echolalia (repetition or echoing of a word or phrase just spoken by another person)
  • Fixation with letters or numbers
  • Listens selectively / appears to be deaf
  • Memorization of sentence structures without understanding the meaning
  • Normal development until 18-24 months, then regression
  • Self-stimulatory behavior (hand flapping, rocking, jumping up and down)
  • Significant difficulty in understanding verbal language
  • Specific or unusual fears
  • Strong auditory and visual memory
  • Think in concrete and literal terms, difficulty with abstract concepts
  • Youngster may appear gifted in some areas and extremely deficient in others

Hyperlexia appears to be different from what is known as hypergraphia (i.e., urge or compulsion to write), although as with many mental conditions or quirks, it is possible that this is more a matter of opinion than strict science.

Despite hyperlexic kid’s precocious reading ability, they may struggle to communicate. Their language may develop in an autistic fashion using echolalia, often repeating words and sentences. Often, the youngster has a large vocabulary and can identify many objects and pictures, but can’t put their language skills to good use. Spontaneous language is lacking and their pragmatic speech is delayed. Between the ages of 4 and 5, many kids make great strides in communicating and much previous stereotypical autistic behavior subsides.

Often, hyperlexic kids have a good sense of humor and may laugh if a portion of a word is covered to reveal a new word. Many prefer toys with letter or number buttons. They may have olfactory, tactile, and auditory sensory issues. Their diets may be picky, and often potty training can be difficult. Social skills lag tremendously. Social stories are extremely helpful in developing effective age-relative social skills, and setting a good example is crucial.

Many moms and dads have had their hyperlexic kids go through numerous evaluations, with various confusing and contradictory diagnoses applied – ranging from Autistic Disorder to Pervasive Developmental Disorder, Aspergers, ADHD, or language disorder. In other cases, there is no diagnosis applied except “precociousness” or “gifted.”

Controversy exists as to whether hyperlexia is a serious developmental disorder like autism, or whether it is in fact a speech or language disorder of a distinct and separate type, or, in some cases, it is simply advanced word recognition skills in a normal (neurotypical) youngster, especially when sometimes accompanying “autistic-like” symptoms are present.

Treatment—

The first step in treatment is to make the proper diagnosis. Then management of the condition follows. When precocious reading ability and extraordinary fascination with words presents itself in a young son or daughter – especially when accompanied by other language or social problems that might suggest an autistic spectrum disorder – a comprehensive assessment by a knowledgeable professional or team familiar with the differential diagnosis of the various forms of hyperlexia is indicated. 

Repetitive Routines and Rituals in Aspergers Kids

Some kids with Aspergers and High-Functioning Autism develop a resistance to (or fear of) change, that then involves being rigid in their approach to their environment. Insistence on sameness, routines and rituals begin. For example:
  • Particular silverware and plates must be used or the Aspergers youngster refuses to eat or drink.
  • Objects may be stacked or lined up in a repetitive manner.
  • Certain routes must be followed to and from familiar places.
  • Certain items must be placed in particular places and not moved.

Confusion about coping in a world that is overwhelming influences this behavior, so the youngster with Aspergers responds to this uncertainty by being in control of their immediate environment, the objects in that environment, and the people in it. Repetitive motor mannerisms may occur when some kids are excited, anxious, or worried. For others, sensory sensitivities and physical enjoyment may drive repetitive jumping, arm flapping, twiddling of fingers in front of their eyes and covering ears and eyes with their hands.

Repetitive behaviors and mannerisms in Aspergers children is a somewhat neglected area of research. In the past, these behaviors were associated with lower levels of functioning, because repetitive motor mannerisms are also seen in kids with intellectual disability who do not have Aspergers. These behaviors were also thought to increase during the preschool years. There is now some evidence that repetitive motor mannerisms develop differently to insistence on sameness and these behaviors follow different paths over time.

Restricted and repetitive behaviors show different patterns of stability in Aspergers kids based partly on the ‘subtype’ they belong to. Young kids with low NVIQ (i.e., non verbal IQ) scores often have persistent motor mannerisms. However, these behaviors often improve in kids with higher nonverbal IQ scores. Many kids who do not have “insistence-on-sameness behaviors” at a young age acquire them as they got older, and some kids who had these behaviors sometimes loss them. 

What should moms and dads do about routines, rituals and repetitive motor mannerisms?

First, ask yourself the questions: “How much of a problem is it?” and “”Who for?” The answer is often that these behaviors are a problem for the mother or father, educators and counselors rather than the youngster himself (who is quite happy to be preoccupied in these ways). Therefore, it is unlikely that the youngster will want to change his behavior. The rules of thumb when making decisions about whether or not to intervene or change routines, rituals and repetitive motor mannerisms are to ask yourself:
  • Will the behavior be acceptable in 5 years time?
  • Does the behavior interfere with or preclude participation in enjoyable activities and an education program?
  • Does the behavior increase the likelihood of social rejection or isolation?
  • Does the behavior endanger the youngster or others?

In preschoolers with Aspergers, adherence to non-functional routines and rituals and displaying repetitive motor mannerisms may be judged inappropriate because they fall into one or more of these categories, or may be tolerated by the family and others and are not seen as problematic.

The most successful treatments for Aspergers children with repetitive rituals are behavioral therapy and medication. Behavioral therapy, also known as cognitive-behavioral psychotherapy (CBT), helps children learn to change thoughts and feelings by first changing behavior. It involves gradually exposing children to their fears, with the agreement that they will not perform rituals, to help them recognize that their anxiety will eventually decrease and that no disastrous outcome will occur.

Some treatment plans involve having the youngster "bossing back" the repetitive rituals, giving it a nasty nickname, and visualizing it as something he can control. Over time, the anxiety provoked by certain unwanted stimuli in the environment and the urge to perform rituals gradually disappear. The youngster also gains confidence that he can "fight" repetitive rituals.

Repetitive rituals and routines can sometimes worsen if it's not treated in a consistent, logical, and supportive manner. So it's important to find a therapist who has training and experience in treating this issue. Just talking about the rituals and fears has not been shown to help repetitive rituals, and may actually make it worse by reinforcing the fears and prompting extra rituals. Family support and cooperation also go a long way toward helping a youngster cope with repetitive rituals.

Many children can do well with behavioral therapy alone while others will need a combination of behavioral therapy and medication. Therapy can help your youngster and family learn strategies to manage the ebb and flow of symptoms, while medication often can reduce the impulse to perform rituals.

The Aspergers Comprehensive Handbook

Aspergers Children and Poor Concentration

Why children with Aspergers and High-Functioning Autism have difficulty concentrating -- and what parents and teachers can do about it:



Teaching Students with Aspergers and HFA

Helping Aspergers Children Alleviate School-Related Stress

Research suggests that up to 80% of students with Aspergers and High-Functioning Autism experience school-related anxiety at some point during their school career. Anxiety Disorders such as OCD, Social Anxiety and Generalized Anxiety Disorder commonly co-occur with Aspergers. When anxiety symptoms are untreated, they can further interfere with a child's quality of education. Kids with both Aspergers and Anxiety Disorders experience a more limited social world than kids with only one disorder. They may have difficulty in adapting at school by avoiding opportunities to make friends, join social activities, and break their usual rituals to try something new.

Although little is known about what anxiety symptoms look like in Aspergers students, the following symptoms (which overlap with Anxiety Disorders) indicate school-related anxiety:
  • Avoidance of new situations
  • Becoming "silly"
  • Becoming explosive easily (e.g., anger outbursts)
  • Increased insistence on routines and sameness
  • Increased preference for rules and rigidity
  • Increased repetitive behavior
  • Increased special interest
  • Irritability
  • Somatic complaints
  • Withdrawal from social situations

So, what can parents do to alleviate their Aspergers child’s school-related anxiety? Here are some tips:

1. Encourage sleep, exercise, and family mealtimes. It's not unusual for 30% - 40% of Aspergers children to get 6 hours of sleep or less (due to Aspergers-related sleep difficulties). Very few are getting the required hours that a child needs (which is 9 ½ hours). Adequate sleep alone will make a big difference in the child’s stress levels.

Exercise to help cope with stress is also an important step toward alleviating school-related anxiety. If all a child has is academics during the day and computer games during the evening, stress due to the lack of exercise is going to build up – and it's got to go somewhere. It's going to help if Aspergers kids are being physically active.

Family time is also crucial for cushioning stress. Having meals together is a good way to connect with your youngster (i.e., a minimum of 20 minutes sitting down together at least 4 to 5 times a week). Listen to your kid, and communicate with him.

2. Keep the fun in childhood. Kids often have too little unstructured time to relax and play, from a leisurely bike ride with friends to a Sunday hanging out at the park. School is their job, and you know how stressful jobs can be. If you don't go and have fun and forget about it for a little while, you're just going to take it with you the next day. And you’re not going to perform as well.

3. Over-scheduling is a big source of school stress. For example, many high-school students enroll in more Honors or Advanced Placement courses than they can handle, and then pile extracurricular activities on top.

If parents filled their kids' schedules with more sleep, down time, and family time, they would notice such a big difference in their children’s stress level. It would be that dramatic of a change. There are so many things to do now. It's not like you just go outside and play. Now there are clubs, sports, ballet, gym – plus you're trying to squeeze homework in there.

As a society, we're just in a whirlwind. For some Aspergers kids, this hurried lifestyle is a source of stress and anxiety that often leads to depression. The challenge is to strike a balance between work and play. If your youngster feels overly stressed and overwhelmed, look for ways to cut back on school work and extra activities (though that's not easy for overachieving parents to hear).

4. Teach kids time-management skills. With today's heavy homework loads, time-management and organizational skills are crucial weapons against stress. Teach your Aspergers kid to budget his time wisely with homework. For example, he should try to do something every night instead of cramming at the last moment.

5. Watch for signs of school-related stress. With Aspergers teens, parents should watch for stress-related behaviors, like purposely cutting themselves, or expressions of despair or hopelessness, however casual the comments may sound. Those are off-hand remarks that you need to take seriously. Younger kids may have more subtle signs of school stress (e.g., headaches, stomachaches, reluctance to go to school, etc.).

6. Watch the parental pressure. Some parents may not realize they're making school stress worse by pressuring their Aspergers kid to excel. But moms and dads who want to ease their youngster’s stress must shift their perspective.

Really think about how you're defining success in your family. If the first question out of your mouth when your child walks through the door is, “How did you do on that Math test today?” …then you're sending a message that you value grades more than anything else. Instead, ask: "What's the best thing that happened to you today?" "Did you learn anything exciting or new?" At first, the conversations may be awkward. It's going to take some practice. But just asking the questions in that way is starting to send the right message.

It's not easy for some parents to lighten up. Even moms and dads who wish to take a lower-key approach to child-rearing fear slowing down when they perceive everyone else is on the fast track. Try to keep in mind that a few low test grades won't torpedo your youngster's lifelong plans.

7. Use some stress-relieving homework tips:
  • Ask the school about resources if your Aspergers youngster is struggling academically. Many schools now have homework clubs, math clubs, and tutoring programs after school.
  • Give your youngster a quiet place to study, free of distractions, away from TV and video games.
  • If your youngster struggles with tracking his homework, help him by following along with homework if his school posts assignments online.
  • If possible, have your youngster study earlier rather than later in the day. The later it is for most children, the shorter their attention span.
  • Teach your youngster to use a planner to keep track of assignments. When he finishes each assignment, he can check them off for a feeling of accomplishment.

The Aspergers Comprehensive Handbook


 COMMENTS:

•    Anonymous said... Definitely applies to my anxious, perfectionistic, Aspie. I try to ask her more about the fun stuff after school every day.
•    Anonymous said... I have aspergers, GAD, OCD, and SPD and I hated school. I home school my kids I would never torture them with public schools. I was bullied even by my so called friends also one teacher. I am indifferent and easily annoyed by faux social BS. I do not require friends, however if I meet a person with similar interests I will engage and try to remember to ask them questions and I tell them that I have aspergers and I wont ever call them or anything so if they want to meet up to just call me and a couple do. (play dates which I normally hate) I like to limit my stress, noise blocking head phones, sunglasses so I can make sure I take my kids out to do lots of fun things. I do not handle schedules or appointments well at all. School is one big schedule! Im guessing parents of aspie kids make them shower every day. Big mistake! you just exhausted half their energy for the day. You can stay clean and not shower daily. Its like you dont take a hungry baby that hasnt napped out to the grocery store! Make them feel comfortable and if they are not figure out a way to make them comfortable, comfort is key to me and that includes my routine, how my clothing feel, list of things I require to function etc I shut down more then I melt down becuase I have a very understanding family that are so thoughtful to help not contribute to over stimulation. Comfort = peace, for me anyway
•    Anonymous said... This is totally my son, but he doesnt see it. He refuses to go to therapy and has missed 8 appointments due to refusal, he doesnt see anything is wrong. He now rarely goes to school. Has anyone else found luck getting treatment for teen who refuses to cooperate?

Post your comment below…

Aspergers Teens and Visual-Spatial Abilities

Which figure is identical to the first?


If you have a teenager with Aspergers or High-Functioning Autsim, you may want to ask him. He will likely be very quick to pick the correct answer. Why?

According to research, many teens with Aspergers and High-Functioning Autism demonstrate superior performance in recognizing and discriminating hidden and embedded designs and figures. Brain studies have shown that Aspergers teens use different neural pathways than “neurotypical” teenagers (those who do not have Aspergers) when trying to understand visual-spatial stimuli.

One study was designed to assess the spatial abilities of Aspergers teens in several tests using a human-size labyrinth or maze. The tests measured the ability to learn routes and find unseen locations, both forward and backwards in the maze. The abilities were tested under two different conditions: (1) by exploring directly the environment and (2) from a map.

Two groups of teens were studied: (1) those with Aspergers with normal IQs, and (2) neurotypical teens matched to the test group for age and IQ. All participants with Aspergers performed at a level equivalent to control subjects in how they found a route and surveyed the maze. However, those with Aspergers were better at tasks that involved using a visual map of the maze (i.e., they could read and recall a graphic of the maze and learned the maps more quickly than controls).

An person’s superior ability to detect, match, and reproduce simple visual elements allows them to perform better in tasks relying on detection and graphic reproduction of visual elements that are included in a map. Teens with Aspergers appear to discriminate, detect, and memorize simple visual patterns better than neurotypical teens, which may account for their superior performance in visual-spatial tasks that rely on recognizing and memorizing landmarks or detecting similarities between a map and landmark features.

In non-social settings, teens with Aspergers have superior spatial abilities than typically developing teens, which has been seen in other similar studies of visual-spatial tests in young people with Aspergers.

The Aspergers Comprehensive Handbook

Aspergers and Selective Mutism

This post addresses what to do if you have a child with Aspergers or High-Functioning Autism who voluntarily refuses to speak or only speaks to certain people or in certain situations.

Children with Aspergers and High-Functioning Autism may not be as withdrawn around others as those with other, more debilitating forms of Autism. For example, an Aspergers child may engage in a one-sided, long-winded discourse about a favored subject, while not recognizing the listener's feelings or reactions. This social awkwardness, or failure to act appropriately in social interactions, may appear as disregard for other's feelings and may come across as insensitive. However, not all Aspergers children will approach others. Some of them may display Selective Mutism (SM) in which they don’t speak at all to most people – but speak excessively to specific people. Some may choose to talk only to people they like.

Selective Mutism (SM) is a complex childhood anxiety disorder characterized by a youngster’s inability to speak and communicate effectively in select social settings (e.g., school). However, these kids are able to speak and communicate in settings where they are comfortable, secure and relaxed.

More than 90% of kids with SM also have social phobia or social anxiety. This disorder is quite debilitating and painful to the youngster. Kids and teens with SM have an actual fear of speaking and of social interactions where there is an expectation to speak and communicate.

Many Aspergers kids with SM have great difficulty responding or initiating communication in a nonverbal manner; therefore social engagement may be compromised in many kids when confronted by others or in a setting that is overwhelming or they sense a feeling of expectation.

Not all kids manifest their anxiety in the same way. Some may be completely mute and unable to speak or communicate to anyone in a social setting, others may be able to speak to a select few or perhaps whisper. Some kids may stand motionless with fear, as they are confronted with specific social settings. They may freeze, be expressionless, unemotional and may be socially isolated. Less severely affected kids may ‘look’ relaxed, carefree and socialize with one or a few kids but are unable to speak and effectively communicate to educators and most or all peers.

When compared to the typically shy and timid youngster, most kids with SM are at the extreme end of the spectrum for timidity and shyness.

Why a youngster develops SM:

The majority of kids with SM have a genetic predisposition to anxiety. In other words, they have inherited a tendency to be anxious from one or more family members. Very often, these kids show signs of severe anxiety, such as separation anxiety, frequent tantrums and crying, moodiness, inflexibility, sleep problems, and extreme shyness from infancy on.

Kids with SM often have severely inhibited temperaments. Studies show that people with inhibited temperaments are more prone to anxiety than those without ‘shy’ temperaments. Most, if not all, of the distinctive behavioral characteristics that kids with SM portray can be explained by the studied hypothesis that kids with inhibited temperaments have a decreased threshold of excitability in the almond-shaped area of the brain called the amygdala. When confronted with a fearful scenario, the amygdala receives signals of potential danger (from the sympathetic nervous system) and begins to set off a series of reactions that will help people protect themselves. In the case of kids with SM, the fearful scenarios are social settings such as birthday parties, school, family gatherings, routine errands, etc.

Some kids with SM have Sensory Integration Dysfunction (DSI) which means they have trouble processing specific sensory information and may be sensitive to sounds, lights, and touch, taste and smells. Some kids have difficulty modulating sensory input which may affect their emotional responses. DSI may cause a youngster to misinterpret environmental and social cues. This can lead to Inflexibility, frustration and anxiety. The anxiety experienced may cause a youngster to shut down, avoid and withdraw from a situation, or it may cause him/her to act out, have tantrums and manifest negative behaviors.

Some kids (20-30%) with SM have subtle speech and/or language abnormalities such as receptive and/or expressive language abnormalities and language delays. Some may have subtle learning disabilities including auditory processing disorder. In most of these cases, the kids have inhibited temperaments (prone to shyness and anxiety). The added stress of the speech/language disorder learning disability, or processing disorder may cause the youngster to feel that much more anxious and perhaps insecure or uncomfortable in situations where there is an expectation to speak.

A small percentage of kids with SM do not seem to be the least bit shy. Many of these kids perform and do whatever they can to get others attention and are described as ‘therapist mimes!’ Reasons for SM in these kids are not proven, but preliminary research indicates that these kids may have other reasons for SM. For example, years of living mute and therefore have ingrained mute behavior despite their lack of social anxiety symptoms or other developmental/speech problems. These kids are literally ‘stuck’ in the nonverbal stage of communication.

The difference between SM and traumatic SM:

Kids who suffer from SM speak in at least one setting and are rarely mute in all settings. Most have inhibited temperaments and manifest social anxiety. For kids with SM, their SM is a means of avoiding the anxious feelings elicited by expectations and social encounters.

Kids with traumatic SM usually develop SM suddenly in ALL situations. An example would be a youngster who witnesses the death of a grandparent or other traumatic event, is unable to process the event and becomes mute in all settings.

It is important to understand that some kids with SM may start out with SM in school and other social settings. Due to negative reinforcement of their SM, misunderstandings from those around them and perhaps heightened stress within their environment, they may develop SM in all settings. These kids have ‘progressive SM’ and are mute in/out of the home with all people, including moms and dads and siblings.

Behavior characteristics a youngster with SM portrays in social settings:

It is important to realize that the majority of kids with SM are as normal and are as socially appropriate as any other youngster when in a comfortable environment. Moms and dads will often comment how boisterous, social, funny, inquisitive, extremely verbal, and even bossy and stubborn these kids are at home! What differentiates most kids with SM is their severe behavioral inhibition and inability to speak and communicate comfortably in most social settings.

Some kids with SM feel as though they are ‘on stage’ every minute of the day! This can be quite heart wrenching for both the youngster and moms and dads involved. Often, these kids show signs of anxiety before and during most social events. Physical symptoms and negative behaviors are common before school or social outings.

It is important for moms and dads and educators to understand that the physical and behavioral symptoms are due to anxiety and treatment needs to focus on helping the youngster learn the coping skills to combat anxious feelings.

It is common for many Aspergers kids with SM to have a blank facial expression and never seem to smile. Many have stiff or awkward body language when in a social setting and seem very uncomfortable or unhappy. Some will turn their heads, chew or twirl their hair, avoid eye contact, or withdraw into a corner or away from the group seemingly more interested in playing alone.

Others are less avoidant and do not seem as uncomfortable. They may play with one or a few kids and be very participatory in groups. These kids will still be mute or barely communicate with most classmates and educators.

As social relationships are built and a youngster develops one or a few friendships, he/she may interact and perhaps whisper or speak to a few kids in school or other settings but seem to be disinterested or ignore other classroom peers. Over time, these kids learn to cope and participate in certain social settings. They usually perform non-verbally or by talking quietly to a select few. Social relationships become very difficult as kids with SM grow older. As peers begin dating and socializing more, kids with SM may remain more aloof, isolated and alone.

Kids with SM often have tremendous difficulty initiating and may hesitate to respond even non-verbally. This can be quite frustrating to the youngster as time goes by. The youngster’s nonverbal communication may go on for many years, becoming more ingrained and reinforced unless the youngster is properly diagnosed and treated. Ingrained behavior often manifests itself by a youngster ‘looking’ and ‘acting’ normally but communicating non-verbally. This particular youngster cannot just ‘start’ speaking. Treatment needs to center on methods to help the youngster ‘unlearn’ the present mute behavior.

The most common characteristics of kids with SM:

Most, if not all, of the characteristics of kids with SM can be attributed to anxiety.

• Appearance - Many Aspergers kids with SM have a ‘frozen-looking,’ blank expressionless face, stiff, awkward body language with lack of eye contact when feeling anxious. This is especially true for younger kids in the beginning of the school year or when suddenly approached by an unfamiliar person. They often appear like ‘animal in the wild’ where they stand motionless with fear! The older the youngster, the less likely they are to exhibit stiff, frozen body language. Also, the more comfortable a youngster is in a setting, the less likely a youngster will ‘look’ anxious. For example, the young youngster who is comfortable and adjusted in school, yet is mute, may seem relaxed, but SM is still present.

• Common symptoms - Picky eater, bowel and bladder issues, sensitive to crowds, lights (e.g., hands over eyes, avoids bright lights), sounds (e.g., dislikes loud sounds, hands over ears, comments that it seems ‘loud’), touch (e.g., being bumped by others, hair brushing, tags, socks, etc), heightened senses, and self-regulation difficulties (e.g., act outing, defiant, disobedient, easily frustrated, stubborn, inflexible, etc.).

• Emotional - When the child is young, he/she may not seem upset about SM since peers are more accepting. As kids age, inner turmoil often develops and they may develop the negative ramifications of untreated anxiety.

• Physical Symptoms - Stomach ache, nausea, vomiting, joint pains, headaches, chest pain, shortness of breath, diarrhea, ‘nervous feelings,’ ‘scared feelings’, etc.

• Sensory Integration Dysfunction (DSI) symptoms/Processing Difficulties/Delays - For many Aspergers kids with SM, sensory processing difficulties are the underlying reason for 'shut down' and SM. In larger, more crowded environments where multiple stimuli is present (such as the classroom setting), where the youngster feels an expectation, sensory modulation specifically, sensory defensiveness exists. Anxiety is created causing a 'freeze' mode to take place. The ultimate 'freeze mode' is SM.

• Social Anxiety Symptoms - Over 90% of kids with SM have social anxiety. Uncomfortable being introduced to people, teased or criticized, being the center of attention, bringing attention to himself/herself, perfectionist (afraid to make a mistake), shy bladder syndrome (Paruresis), and eating issues (embarrassed to eat in front of others).

• Social Being - Most kids with SM want friends, and need friends. Most kids with SM have appropriate social skills, but some do not and need help in developing proper social skills.

• Temperamental Inhibition - Timid, cautious in new and unfamiliar situations, restrained, usually evident from infancy on. Separation anxiety as a young youngster.

Within the classroom, a youngster with sensory difficulties may demonstrate one or more of the following symptoms:
  • difficulty completing tasks
  • difficulty following a series of directions or staying on task
  • distractibility
  • hesitation in responding (even non-verbally)
  • not playing at all
  • playing alone
  • withdrawal

Sensory processing difficulties may or may not cause 'learning' or academic difficulties. Many Aspergers kids, especially, highly intelligent ones, can compensate academically and actually do quite well. Many focus on their academic skills, often leaving behind 'the social interaction' within school. This tends to be more obvious as the youngster ages. What is crucial to understand is that many of these symptoms may not exist in a comfortable and predictable setting, such as at home.

In some kids, there are processing problems, such as auditory processing disorder, that cause learning issues as well as heightened stress.

• Behavioral - Kids with SM are often inflexible and stubborn, moody, bossy, assertive and domineering at home. They may also exhibit dramatic mood swings, crying spells, withdrawal, avoidance, denial, and procrastination. These kids have a need for inner control, order and structure, and may resist change or have difficulty with transitions. Some kids may act, silly or act out negatively in school, parties, in front of family and friends. WHY? Because these kids have developed maladaptive coping mechanisms to combat their anxiety.

• Communication Difficulties - Some kids may have difficulty responding non-verbally to others (i.e., cannot point/nod in response to a teacher’s question, or indicate ‘thank you’ by mouthing words). For many, waving hello/goodbye is extremely difficult. However, this is situational. This same youngster cannot only respond non-verbally when comfortable, but can chatter nonstop! Some kids may have difficulty initiating non-verbally when anxious (i.e., has difficulty or is unable to ‘initiate’ play with peers or going up to teacher to indicate need or want).

• Co-Morbid Anxieties - Separation anxiety, Obsessive Compulsive Disorder (OCD), hoarding, Trichotillomania (i.e., hair pulling, skin picking), Generalized Anxiety Disorder Specific phobias, Panic Disorder.

• Social Engagement difficulties - When one truly examines the characteristics of a youngster with SM, it is obvious that many are unable to socially engage properly. When confronted by a stranger or less familiar individual, a youngster may withdrawal, avoid eye contact and 'shut down' not only leaving a youngster speechless but preventing him/her from engaging with another individual. Greeting others, initiating needs/wants etc. are often impossible for many Aspergers kids. Many shadow their parent in social environments often avoiding any social interaction at all. As the youngster ages, freezing and shut-down rarely exist, but the youngster remains either non-communicative or will respond non-verbally after an indeterminate amount of warm up time.

When most kids are diagnosed with SM:

Most kids are diagnosed between 3 and 8 years old. In retrospect, it is often noted that these kids were temperamentally inhibited and severely anxious in social settings as infants and toddlers, but adults thought they were just ‘very shy.’ Most kids have a history of separation anxiety and being ‘slow to warm up.’ Often it is not until kids enter school and there is an expectation to perform, interact and speak, that SM becomes more obvious. What often happens is educators tell moms and dads the youngster is not talking or interacting with the other kids. In other situations, moms and dads will notice, early on, that their youngster is not speaking to most people outside the home. If SM persists for more than a month, a parent should bring this to the attention of their youngster’s doctor.

Misunderstanding SM:

Studies of SM are scarce. Most research results are based on subjective findings based on a limited number of kids. In addition, textbook descriptions are often nonexistent or information is limited, and in many situations, the information is inaccurate and misleading. As a result, few people truly understand SM. Therapists and educators will often tell a parent, ‘the youngster is just shy,’ or ‘they will outgrow their silence.’ Others interpret the SM as a means of being oppositional and defiant, manipulative or controlling. Some therapists erroneously view SM as a variant of autism or an indication of severe learning disabilities. For most kids who are truly affected by SM, this is completely wrong and inappropriate!

Kids who seem oppositional’ in nature often have moms and dads, educators, and/or treating therapists who have pressured them to speak for months, perhaps years. SM not only persists in these kids, but is negatively reinforced. These kids may develop oppositional behaviors out of a combination of frustration, their own inability to ‘make sense’ of their SM, and others pressuring them to speak.

As a result of the scarcity and, often, inaccuracy of information in the published literature, kids with SM may be misdiagnosed and mismanaged. In many circumstances, moms and dads will wait and hope their youngster outgrows their SM (and may even be told to do so by well-meaning, but uninformed therapists). However, without proper recognition and treatment, most of these kids do not outgrow SM and end up going through years without speaking, interacting normally, or developing appropriate social skills. In fact, many people who suffer from SM and social anxiety who do not get proper treatment to develop necessary coping skills may develop the negative ramifications of untreated anxiety.

The importance of getting a diagnosis while the child is young:

The earlier a youngster is treated for SM, the quicker the response to treatment, and the better the overall prognosis. If a youngster remains mute for many years, his/her behavior can become a conditioned response where the youngster literally gets used to non-verbalizing. In other words, SM can become a difficult habit to break!

Because SM is an anxiety disorder, if left untreated, it can have negative consequences throughout the youngster’s life and, unfortunately, pave the way for an array of academic, social and emotional repercussions. For example:
  • Depression and manifestations of other anxiety disorders
  • Poor self-esteem and self-confidence
  • School refusal, poor academic performance, and the possibility of quitting school
  • Self-medication with drugs and/or alcohol
  • Social isolation and withdrawal
  • Suicidal thoughts and possible suicide
  • Underachievement academically and in the work place
  • Worsening anxiety

The main objective is to diagnose kids early so they can receive proper treatment at an early age, develop proper coping skills, and overcome their anxiety.

What parents should do if they suspect their youngster has SM:

Moms and dads should initially remove all pressure and expectations for the youngster to speak, conveying to their youngster that they understand he/she is ‘scared’ and it is ‘hard to get the words out’ and that they will help their youngster through this difficult time. Praise the youngster’s efforts and accomplishments, support and acknowledge the difficulties and frustrations.

Moms and dads should speak with their family doctor or pediatrician and/or seek out a psychiatrist or a therapist who has experience with SM. However, please note that having ‘experience’ with SM does not guarantee that the treatment approach and understanding is correct. In fact, a clinician with less experience, yet who has an excellent understanding of SM may be an ideal choice for your youngster!

Key questions to ask the therapists or doctor:

Do your homework! You will have a much better idea ‘what to look for’ if you understand SM. Educate yourself as much as possible before seeing any therapist. Moms and dads should read as much information as they can about SM.

Key questions to ask include...
  • Can you supply me with references of families you have worked with
  • Have you ever treated a youngster with SM? If so, how many and what are your success rates?
  • How will you work with my youngster to help him/her progress communicatively?
  • What are your areas of expertise?
  • What are your views on SM?
  • What are some of the reasons a youngster manifests SM?
  • What is your opinion on medication in treating SM and when do you consider medication?
  • What is your treatment approach to SM?
  • What will be my role as a parent? 
  • What is the teacher’s role?

When speaking to potential treating therapists, please be cautious of those who see SM as a ‘controlling/manipulative’ behavior. Treatment approaches based on ‘discipline’ and ‘forcing’ a youngster to speak are inappropriate and will only heighten anxiety and negatively reinforce mute behavior.

Kids do not progress communicatively without learning coping skills. Simply lowering anxiety is not enough to enable the youngster to begin engaging socially, learning to progress to verbal communication and feeling comfortable in an environment. SKILLS must be taught.

Evaluation for SM:

A trained therapist familiar with SM will have a parental interview. Emphasis will be on social interaction and developmental history, other manifestations of anxiety, behavioral characteristics (e.g., shy temperament), home life description (e.g., family stress, divorce, death, etc.) and medical history. From the results of the initial interview, the therapist will often see the youngster. Kids with SM may or may not speak to the diagnosing therapist. Whether a youngster speaks to the evaluating doctor does not really matter. An astute therapist should be able to assess interpersonal communication skills and build rapport quite easily and, if given at least one session and possibly viewing videotapes from home, can rule in or out SM as a diagnosis.

Because 20-30% of kids with SM have an abnormality with speech and language, a thorough speech and language evaluation is often ordered. If motor/sensory issues exist an occupational therapy evaluation is also recommended. A complete physical exam (including hearing), standardized testing, psycho-educational testing as well as a thorough developmental screening are often recommended if the diagnosis is not clear.

The diagnostic criteria for SM:
  1. Consistent failure to speak in specific social situations (in which there is an expectation for speaking, e.g., at school) despite speaking in other situations.
  2. The disturbance interferes with educational or occupational achievement or with social communication.
  3. The disturbance is not better accounted for by a Communication Disorder (e.g., stuttering) and does not occur exclusively during the course of a Pervasive Developmental Disorder, Schizophrenia, or other Psychotic Disorder.
  4. The duration of the disturbance is at least 1 month (not limited to the first month of school).
  5. The failure to speak is not due to a lack of knowledge of, or comfort with, the spoken language required in the social situation.

Associated features of SM may include excessive shyness, fear of social embarrassment, social isolation and withdrawal, clinging, compulsive traits, negativism, temper tantrums, or controlling or oppositional behavior, particularly at home. There may be severe impairment in social and school functioning. Teasing or goading by peers is common. Although kids with this disorder generally have normal language skills, there may occasionally be an associated Communication Disorder (e.g., Phonological Disorder, Expressive Language Disorder, or Mixed Receptive- Expressive Language Disorder) or a general medical condition that causes abnormalities of articulation. Mental Retardation, hospitalization or extreme psychosocial stressors may be associated with the disorder. In addition, in clinical settings kids with SM are almost always given an additional diagnosis of Anxiety Disorder, especially Social Phobia is common.

Treatment of SM:

The main goals of treatment should be to lower anxiety, increase self-esteem and increase social confidence and communication. Emphasis should never be on ‘getting a youngster to talk.’ ALL expectations for verbalization should be removed. With lowered anxiety, confidence, and the use of appropriate tactics/techniques, communication will increase as the youngster progresses from nonverbal to verbal communication.

Treatment approaches should be individualized, but the majority of kids are treated using a combination of approaches.

1. Behavioral Therapy: Positive Reinforcement and Desensitization techniques are the primary behavior treatments for SM, as well as removing all pressure to speak. Emphasis should be on understanding the youngster and acknowledging their anxiety. Introducing the youngster to social environments in subtle and non-threatening ways is an excellent way to help the youngster feel more comfortable (i.e., moms and dads can take the youngster into school when few people are around to get the youngster to ‘practice speaking). Eventually, bring a friend or two to school and allow the kids to play when other kids are not present. Small groups with only a small number of kids help, as well as allowing moms and dads to spend time with the youngster within the class. After the youngster is speaking quite normally, the teacher, and then the students are gradually introduced into the group setting. Positive reinforcement for verbalization should be introduced when, and only when, anxiety is lowered and the youngster feels comfortable and is obviously ready for some subtle encouragement.

2. Cognitive Behavioral Therapy: CBT trained therapists help kids modify their behavior by helping them redirect their fears and worries into positive thoughts. CBT needs to incorporate awareness and acknowledgement of anxiety and SM. Most kids with SM ‘worry’ about others hearing their voice, asking them questions about ‘why they do not talk’ and trying to force them to speak. The focus should be on emphasizing the youngster’s positive attributes, building confidence in social settings, and lowering overall anxiety and worries.

3. Family involvement and parental acceptance: Family members must be involved in the entire treatment process! Very often changes in parenting styles and expectations are necessary to accommodate the needs of the youngster. Remember, never pressure or force your youngster to speak…this will only cause more anxiety. Convey to your youngster that you are there for them. Spend one on one time, especially at night, when all pressure is off and engage your youngster in discussions about their feelings. Allowing your youngster to ‘open up’ helps relieve stress. A parent’s acceptance and understanding is crucial for the youngster!

4. Frequent socialization: Encourage as much socialization as possible without ‘pushing’ your youngster. Arrange frequent play dates with classmates or even small group interactions with people the youngster knows well. The goal is for your youngster to feel comfortable enough with the classmates so that verbalization will occur. Most kids with SM will talk to friends in their own home. As the youngster gets increasingly comfortable speaking to one youngster, invite another youngster over, and then have two or three kids at a time! Transfer speaking into the school via set tactics/techniques. For some kids, Social Skill therapy is necessary and often helpful in accomplishing increased communication.

5. Medication: Studies indicate that the most effective approach to treatment is a combination of behavioral techniques and medication. Often behavioral techniques are used for an indeterminate amount of time prior to the addition of medication. If kids are not making enough progress with behavioral therapy alone, medication may be recommended to reduce the anxiety level. Serotonin reuptake inhibitors (SSRI’s) such as Prozac, Paxil, Celexa, Luvox, and Zoloft are very effective in the treatment of anxiety disorders. Similar to the SSRI’s, there are other drugs that affect one or more neurotransmitters such as serotonin, norepinephrine, GABA, and dopamine, etc. which are also proving to be affective. Examples are Effexor XR and Buspar. Both classes of drugs work well in kids who have a true biochemical imbalance. This seems to be the case in the majority of kids with SM. Very often, we have seen positive effects in as little as a week! Medication is used as a ‘jump start’ with the hope that, as we lower anxiety via medication, we can implement behavioral techniques more easily and successfully! Goals for the duration of treatment with medication are usually 9-12 months.

6. Play Therapy, Psychotherapy, and other psychological approaches: These can be effective if all pressure for verbalization is removed and emphasis is on helping the youngster relax and open up. Confronting SM in a non-threatening way is important. These kids are afraid, and the focus should be to help them identify their level of 'being scared' in a particular situation. Helping them to realize that you understand and are there to help them relieves tremendous pressure.

7. School involvement: Moms and dads need to educate educators and school personnel about SM! You must be an advocate for your youngster. The school needs to understand that kids with SM are not being defiant or stubborn by not speaking, that they truly can't speak. Explain to the teacher that a youngster needs to feel that it is ‘alright’ for them not to speak. Nonverbal communication is acceptable in the beginning. As the youngster progresses with treatment, the teacher should be involved in the treatment plan with verbalization being encouraged in subtle, non-threatening ways. An Individualized Educational Plan or 504 Plan may be necessary to help accommodate your youngster’s inability to communicate verbally and to help the youngster progress communicatively as well as build social comfort.

8. Self-esteem boosters: Moms and dads should emphasize their youngster’s positive attributes. For example, if your youngster is artistic, then by all means show off the artwork! Have a special wall to display your youngster’s masterpieces; perhaps you can even have a special exhibition! Have them ‘explain’ their artwork to family members and close friends. This promotes more verbalization practice, as well as helps with confidence!

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