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The Autistic Spectrum

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Listed on this page you will find information on the Autism Spectrum as well as many other disorders, some of which can be diagnosed along with Autism. Also on this page you'll find information on anesthesia and its effects on spectrum individuals.
 
 
 
 

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What do I do if I suspect my child needs Special Education Services?

Reading Rockets-Questions and Answers Learning disabilities can make learning to read really hard. Whether you are wondering if your child has a learning disability or looking for ways to help, these questions will help you support a struggling reader.



Definition of Asperger Syndrome from the National Autistic Society in the UK

Social Communication

People with AS may be very good at basic communication and letting people know what they think and feel. Their difficulties lie in the social aspects of communication. For example:

They may have difficulty understanding gestures, body language, and facial expressions.
They may not be aware of what is socially appropriate and may have difficulty choosing topics to talk about.
They may not be socially motivated because they find communication difficult, so they may not have many friends and they may choose not to socialise very much.
Some of these problems can be seen in the way people with AS present themselves.

 
For example, classic traits include:

Difficulty making eye contact.
Repetitive speech.
Difficulties expressing themselves, especially when talking about emotions.
Anxiety in social situations, and resultant nervous tics.
Social Understanding

Typical examples of difficulties with social understanding include:

Difficulties in group situations, such as going to the pub with a group of friends.
Finding small talk and chatting very difficult.
Problems understanding double meanings, for example, not knowing when people are teasing you.
Not choosing appropriate topics to talk about.
Taking what people say very literally.
You might want to back this up with specific examples of the kind of social situations you find difficult.

Imagination
This can be a slightly confusing term. People often assume it means that people with AS are not imaginative in the conventional use if the word, for example, they lack creative abilities. This is not the case, and many people with AS are extremely able writers, artists and musicians. Instead, lack of imagination in AS can include difficulty imagining alternative outcomes and finding it hard to predict what will happen next. This frequently lead to anxiety. This can present as:

An obsession with rigid routines and distress if routines are disrupted.
Problems with making plans for the future and having difficulties organising your life.
Problems with sequencing tasks, so that preparing to go out can be difficult because you can't always remember what to take with you.
Some people with AS over compensate for this by being extremely meticulous in their planning, and having extensive written or mental checklists.

Secondary Traits of Asperger Syndrome
Besides the triad of impairments, people with AS tend to have difficulties which relate to the triad but are not included within it. These can include:

Obsessive compulsive behaviours. Often these are severe enough to be diagnosed as Obsessive Compulsive Disorder or OCD.
These can also be linked to obsessive interest in just one topic, for example they might have one subject about which they are extremely knowledgeable which they want to talk about with everyone they meet.
Phobias. Sometimes people with AS are described as having a social phobia, but they may also be affected by other common fears such as claustrophobia and agoraphobia.
Acute anxiety, which can lead to panic attacks and a rigid following of routines.
Depression and social isolation. This is especially common among adults.
Clumsiness, often linked dot a condition known as dyspraxia. This includes difficulties with fine motor coordination, such as difficulties writing neatly, as well as problems with gross motor coordination, such as ungainly movements, tripping and falling a lot, and sometimes appearing drunk as a result.
Not having these associated problems does not mean you do not have AS, but if you have any of them you might want to describe it in order to back up your case.

ICD 10 (World Health Organisation 1992) Diagnostic Criteria

A. A lack of any clinically significant delay in language or cognitive development.

Diagnosis requires that single words should have developed by two years of age or earlier and that communicative phrases be used by three years of age or earlier. Self-help skills, adaptive behaviour and curiosity about the environment during the first three years should be at a level consistent with normal intellectual development. However, motor milestones may be somewhat delayed and motor clumsiness is usual (although not a necessary diagnostic feature). Isolated special skills, often related to abnormal preoccupations, are common, but are not required for diagnosis.

B. Qualitative impairments in reciprocal social interaction (criteria as for autism).

Diagnosis requires demonstrable abnormalities in at least 3 out of the following 5 areas:

Failure adequately to use eye-to-eye gaze, facial expression, body posture and gesture to regulate social interaction;
Failure to develop (in a manner appropriate to mental age, and despite ample opportunities) peer relationships that involve a mutual sharing of interests, activities and emotions;
Rarely seeking and using other people for comfort and affection at times of stress or distress and/or offering comfort and affection to others when they are showing distress or unhappiness;
Lack of shared enjoyment in terms of vicarious pleasure in other people's happiness and/or a spontaneous seeking to share their own enjoyment through joint involvement with others;
A lack of socio-emotional reciprocity as shown by an impaired or deviant response to other people's emotions; and/or lack of modulation of behaviour according to social context, and/or a weak integration of social, emotional and communicative behaviours.

C. Restricted, repetitive and stereotyped patterns of behaviour, interests and activities. (Criteria as for autism; however it would be less usual for these to include either motor mannerisms or preoccupations with part-objects or non-functional elements of play materials).

Diagnosis requires demonstrable abnormalities in at least 2 out of the following 6 areas:

An encompassing preoccupation with stereotyped and restricted patterns of interest;
Specific attachments to unusual objects;
Apparently compulsive adherence to specific, non-functional, routines or rituals;
Stereotyped and repetitive motor mannerisms that involve either hand/finger flapping or twisting, or complex whole body movement;
Preoccupations with part-objects or non-functional elements of play materials (such as their odour, the feel of their surface/ or the noise/vibration that they generate);
Distress over changes in small, non-functional, details of the environment.

D. The disorder is not attributable to the other varieties of pervasive developmental disorder; schizotypal disorder; simple schizophrenia; reactive and disinhibited attachment disorder of childhood; obsessional personality disorder; obsessive compulsive disorder.

Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) Diagnostic Criteria

A. Qualitative impairment in social interaction, as manifested by at least two of the following:

Marked impairment in the use of multiple nonverbal behaviours such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction;
Failure to develop peer relationships appropriate to developmental level;
A lack of spontaneous seeking to share enjoyment, interests or achievements with other people (eg: by a lack of showing, bringing, or pointing out objects of interest to other people);
Lack of social or emotional reciprocity.

B. Restricted repetitive and stereotyped patterns of behaviour, interests, and activities, as manifested by at least one of the following:

Encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus;
Apparently inflexible adherence to specific, non-functional routines or rituals;
Stereotyped and repetitive motor mannerisms (eg: hand or finger flapping or twisting, or complex whole-body movements);
Persistent preoccupation with parts of objects

C. The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning.

D. There is no clinically significant general delay in language (eg: single words used by age 2 years, communicative phrases used by age 3 years).

E. There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behaviour (other than social interaction), and curiosity about the environment in childhood.

F. Criteria are not met for another specific Pervasive Developmental Disorder, or Schizophrenia.

Gillberg (1991) Diagnostic Criteria

A. Severe impairment in reciprocal social interaction as manifested by at least two of the following four:

Inability to interact with peers.
Lack of desire to interact with peers.
Lack of appreciation of social cues.
Socially and emotionally inappropriate behaviour.

B. All-absorbing narrow interest, as manifested by at least one of the following three:

Exclusion of other activities.
Repetitive adherence.
More rote than meaning.

C. Speech and language problems, as manifested by at least three of the following five:

Delayed development of language.
Superficially perfect expressive language.
Formal, pedantic language.
Odd prosody, peculiar voice characteristics.
Impairment of comprehension, including misinterpretations of literal/implied meanings.

D. Non-verbal communication problems, as manifested by at least one of the following five:

Limited use of gestures.
Clumsy/gauche body language.
Limited facial expression.
Inappropriate expression.
Peculiar, stiff gaze.

E. Motor clumsiness, as documented by poor performance on neurodevelopmental examination.

Discovery Criteria by T. Attwood and C. Gray
A qualitative advantage in social interaction, as manifested by a majority of the following:

Peer relationships characterized by absolute loyalty and impeccable dependability
Free of sexist, "age-ist", or culturalist biases; ability to regard others at "face value"
Speaking ones mind irrespective of social context or adherence to personal beliefs
Ability to pursue personal theory or perspective despite conflicting evidence
Seeking an audience or friends capable of: enthusiasm for unique interests and topics; consideration of details; spending time discussing a topic that may not be of primary interest
Listening without continual judgment or assumption
Interested primarily in significant contributions to conversation; preferring to avoid "ritualistic small talk" or socially trivial statements and superficial conversation.
Seeking sincere, positive, genuine friends with an unassuming sense of humour.
Fluent in "Aspergerese", a social language characterized by at least three of the following:

A determination to seek the truth
Conversation free of hidden meaning or agenda
Advanced vocabulary and interest in words
Fascination with word-based humour, such as puns
Advanced use of pictorial metaphor
Cognitive skills characterized by at least four of the following:

Strong preference for detail over gestalt
Original, often unique perspective in problem solving
Exceptional memory and/or recall of details often forgotten or disregarded by others, for example: names, dates, schedules, routines
Avid perseverance in gathering and cataloguing information on a topic of interest
Persistence of thought
Encyclopaedic or "CD ROM" knowledge of one or more topics
Knowledge of routines and a focused desire to maintain order and accuracy
Clarity of values/decision making unaltered by political or financial factors
Additional possible features:

Acute sensitivity to specific sensory experiences and stimuli, for example: hearing, touch, vision, and/or smell
Strength in individual sports and games, particularly those involving endurance or visual accuracy, including rowing, swimming, bowling, chess
"Social unsung hero" with trusting optimism: frequent victim of social weaknesses of others, while steadfast in the belief of the possibility of genuine friendship
Increased probability over general population of attending university after high school
Often take care of others outside the range of typical development

Summary of the Diagnostic Criteria
In very brief summary I would describe Asperger syndrome as:

At least average intelligence.
Normal language development.
Different style of communication and interaction, with social problems likely as a result.
Different style of thinking, with learning difficulties and/or unusual gifts likely as a result.
Different style of perceptions, with non-typical behaviours and reactions likely as a result.
I think the big dilemma with diagnostic criteria is that they only exist in the first place because they are designed to identify the existence of a problem, so they are bound to be quite negative and focusing on the bad rather than the good. After all, doctors don't have time to diagnosis people with being OK... they are there to help people who need it. People with Asperger syndrome usually need help, because it can be very disabling and traumatic being different, but the experience is different for everybody...

Some people need help just to cope with life at all.
Some people struggle because they lack the support and understanding that others take for granted.
Some people are lucky enough to have the support and understanding they need and cope about as well as anybody.
There are three ways of looking at that... either some people are more mildly 'Asperger' than others OR having Asperger syndrome itself is not a problem, but the consequences of it sometimes can be and often are, (possibly depending on your personality and circumstances), OR it could be a combination of both. I'll leave you with that to think about anyway because I don't know what I think yet.

Source: http://www.as-if.org.uk/criteria.htm

What is autism?

Autism is a complex biological disorder that generally lasts throughout a persons life. It is called a developmental disability because it starts before age three, in the developmental period, and causes delays or problems with many different ways in which a person develops or grows.
 
In most cases, autism causes problems with:
  • Communication, both verbal (spoken) and nonverbal (unspoken)
  • Social interactions with other people, both physical (such as hugging or holding) and verbal (such as having a conversation)
  • Routines or repetitive behaviors, like repeating words or actions over and over, obsessively following routines or schedules for their actions, or having very specific ways of arranging their belongings
The symptoms of the disorder cut off people with autism from the world around them. Children with autism may not want their mothers to hold them. Adults with autism may not look others in the eye. Some people with autism never learn how to talk. These behaviors not only make life difficult for people who have autism, but also make life hard for their families, their health care providers, their teachers, and anyone who comes in contact with them.
 
When should a doctor evaluate a child for autism?

Doctors should do a developmental screening at every well-baby and well-child visit, through the preschool years. In this screening, the doctor asks questions related to normal development that allow him or her to measure a specific childs development. These questions are often more specific versions of the red flags listed on the previous page, such as Does the child cuddle like other children? Or, Does the child direct your attention by holding up objects for you to see? The doctor will also ask if the child has any features that were listed earlier as definite signs for evaluation for autism.
 
If the doctor finds that a child either has definite signs of autism, or has a high number of red flags, he or she will send the child to a specialist in child development or another type of health care professional, so the child can be tested for autism. The specialist will rule out other disorders and use tests specific to autism. Then he or she will decide whether a formal diagnosis of autism, ASD, or another disorder is appropriate.
 
Are there any behaviors that signal a need for a doctor to evaluate a child for autism?

A doctor should definitely and immediately evaluate a child for autism if he or she:
 
  • Does not babble or coo by 12 months of age
  • Does not gesture (point, wave, grasp, etc.) by 12 months of age
  • Does not say single words by 16 months of age
  • Does not say two-word phrases on his or her own (rather than just repeating what someone says to him or her) by 24 months of age
  • Has any loss of any language or social skill at any age
Are there other things that might be signs of autism?

There are a number of things that parents, teachers, and others who care for children can look for to determine if a child needs to be evaluated for autism.  The following red flags could be signs that a doctor should evaluate a child for autism or a related communication disorder. Important to note, your child may not show some/all of these "red flags".
  • Language skills or speech are delayed.
  • The child doesnt follow directions.
  • At times, the child seems to be deaf.

The child:

  • does not respond to his/her name
  • cannot explain what he/she wants
  • seems to hear sometimes, but not others
  • doesn't point or wave bye-bye
  • used to say a few words or babble, but now he/she doesnt
  • throws intense or violent tantrums
  • has odd movement patterns
  • is hyperactive, uncooperative, or oppositional
  • doesn't know how to play with toys
  • doesn't smile when smiled at
  • has poor eye contact
  • gets stuck on things over and over and cant move on to other things
  • seems to prefer to play alone
  • gets things for him/herself only
  • is very independent for his/her age
  • does things early compared to other children
  • seems to be in his/her own world 
  • seems to tune people out
  • is not interested in other children
  • walks on his/her toes
  • shows unusual attachments to toys, objects, or schedules (i.e., always holding a string or having to put socks on before pants). 
    spends a lot of time lining things up or putting things in a certain order.
What are the treatments for autism?
 
Many families of children and adults with autism are finding new hope from a variety of treatments for autism. The list below does not include all of the possible treatments for autism. If you have a question about treatment, you should talk to a health care professional who specializes in caring for people with autism. Some treatments include:
  • Individualized Education Programs (IEPs) are one effective way to prevent problem behaviors typically related to autism. IEPs involve a variety of interventions, including some of those mentioned below, and are designed to help a child or adult with autism to overcome his or her specific problems. Children with autism seem to respond very well to IEPs that are properly designed and systematically put into practice.
  • Comprehensive Treatment Programs encompass a number of different theories about treating autism. These programs range from specific methods of learning, to applied behavior analysis, to reaching certain developmental goals. In general, children need to be in this type of program for 15-40 hours a week, for two years or more, to change their behaviors and prevent problems.
  • Applied Behavior Analysis (ABA) generally focuses on reducing specific problem behaviors and teaching new skills. Recently, ABA programs have broadened their scope to include what to do before or between episodes of problem behaviors, in addition to what to do during or after these episodes. By showing children or adults with autism how to handle things like a change in schedule, furniture that has been moved, and meeting new people, ABA removes these situations as triggers for problem behaviors.
  • Positive Behavioral Interventions and Support (PBS) is an approach that tries to increase positive behaviors, decrease problem behavior, and improve the childs or adults lifestyle. The PBS method looks at the interactions between people with autism, their environment, their behavior, and their learning processes to develop the best lifestyle for them.
  • Medications can also be effective in improving the behavior or abilities of a person with autism. In general, these medications are called psychoactive because the drugs affect the brain of a person with autism. Medication is often used to deal with a specific behavior, such as reducing self-injurious behavior, which may allow the person with autism to focus on other things, like learning. 

Many people with autism have other, treatable conditions in addition to their autism. Sleep disorders, seizures, allergies, and digestive problems are common among those with autism, but these problems can often be treated with medication. Treatment for these conditions cannot cure autism, but it can improve the quality-of-life for people who have autism and their families.

What conditions are included in the autism spectrum disorder (ASD) category?
 
Currently, ASD includes:
  • Autistic disorder (sometimes called classic autism)
  • Asperger syndrome
  • Childhood disintegrative disorder (CDD)
  • Rett syndrome
  • Pervasive Developmental Disorder Not Otherwise Specified (PDDNOS) or atypical autism
Depending on his or her specific symptoms, a person with autism can be in any one of these categories.
 
In 1999, NICHD-supported researchers identified the gene responsible for Rett syndrome, one of the conditions included in the ASD category. Rett syndrome occurs only in girls and causes them to develop autism-like symptoms after seemingly normal development. This discovery could lead to improved detection, prevention, and treatment of Rett syndrome.
 
Advances in detecting, preventing, and treating Rett syndrome may shed light on ways to understand and treat ASDs, including those aspects of ASD that may involve regression.
 
When do people usually show signs of autism?

In most cases, the symptoms of autism are measurable by certain screening tools at 18 months of age. However, parents and experts in autism treatment can usually detect symptoms before this time. In general, a formal diagnosis of autism can be made when a child is two, but is usually made when a child is between two and three, when he or she has a noticeable delay in developing language skills.
 
Recent studies show that at least 20 percent of children with autism experienced a regression, as reported by their parents.  This means that the children had a mostly normal development, but then had a loss of social or communication skills.
 
Who usually gets autism?
 
Current figures show that autism occurs in all racial, ethnic, and social groups. These statistics also show that boys are three-to-four times more likely to be affected by autism than girls are.  In addition, if a family has one child with autism, there is a 5-to-10 percent chance that the family will have another child with autism. This rate may be an underestimate, given that many families with one autistic child will stop having children due to stress or the fear of having another child with the disorder.  In contrast, if a family does not have a child with autism, there is only a 0.1-to-0.2 percent chance that the family will have a child with autism.
 
Who is allowed to diagnose a person with Asperger's or PDD? 
 
Medical doctors (GP's, psychiatrists, pediatricians) and psychologists are permitted to give a formal diagnosis of any type of PDD. Social workers, therapists, nurses, occupational therapists, and speech-language pathologists may provide a professional opinion as to the likelihood that a child or an individual has the disorder.
 
Is it possible that more than one person in my family has PDD? 
 
Yes it is. Studies are increasingly pointing to a genetic basis for autism and other Pervasive Developmental Disorders. Multiple occurrences of the disorder may occur in the same generation or across generations.
 
Should I do anything to prepare for my child being assessed? 
 
The doctor may want to see any previous assessments that your child has had; if you have them, bring them along to the appointment. As well, as a part of the assessment, developmental milestones will be discussed. It is helpful to think of these beforehand and gather any records you may have (for instance, a baby book that you have recorded milestones). Make a list of the characteristics, problems, or behaviors that are concerning you before the appointment. As well, write out any questions that you may have for the doctor.

What is the process involved in getting a diagnosis from a professional? 
 
It depends on the individual completing the assessment and the individual being assessed. Some doctors may not make a diagnosis immediately and will prefer instead to wait and see how a young child progresses over time. Those who are very familiar with PDD conditions, may feel confident about making a diagnosis immediately. During the interview(s) the assessor will want to know the characteristics that are concerning and the child's or adult's developmental milestones. Standardized tests (such as tests of intelligence and language abilities) may be a part of an assessment, especially if the diagnostician is a psychologist.

My child already has another diagnosis. Will that diagnosis remain if they are diagnosed with PDD? 
 
This is a complex question and there may be considerable variation as to how professionals respond to this issue. Sometimes, a diagnosis that is given before a diagnosis of PDD or Asperger's is given, addresses some of the problems that may be evident (for example, a learning disability or attention deficit problem). But, this label may not account for the whole range of characteristics that a diagnosis of PDD addresses. It is therefore most helpful to think of your child as having the diagnosis which is most inclusive of all the symptoms which s/he exhibits. If an individual has symptoms which are not explained by a diagnosis of PDD (such as depression or severe anxiety), these labels may be given in addition to a diagnosis of PDD. In this case, they may need special attention in the individual's treatment plan.

Will a diagnosis of PDD or Asperger's work against my child in the future? 
 
Probably not. Unfortunately, inappropriate use of diagnoses has happened in the past with other childhood disorders and many parents are understandably leary of having their child "labeled". A diagnosis of PDD will hopefully help you to get the most appropriate services and treatment for your child. As well, it is critical that your child's treatment and educational plans are made with this diagnosis in mind.
 
Who should I tell my child's diagnosis to? 
 
Any professional involved with your child (teachers, doctors, social workers, therapists) should know that your child has been diagnosed with PDD. In some cases, if your child is very mildly affected by PDD or Asperger's it may not be necessary to tell others involved with your child (such as camp counselors, swimming coaches, etc.). However, in most cases, telling these people helps them understand your child better and interact more effectively with them.

Now that my child has been diagnosed, what's next? 
 
When your child is diagnosed, the most important next step is for you and professionals involved with your child to learn about the many methods of intervention used with individuals with PDD.
 
Is it Autism? 
 
When trying to address specific behaviors, a good place to start is to take into consideration how these behaviors may be the result of the neurological impairments that are associated with autism. From this perspective, parents and teachers can then begin to examine their students sensory environment for things that may be causing problematic behaviors. Things such as fire alarms and school bells may be causing physical pain for someone with autism who has a high degree of sensitivity to high pitched sounds. Other possible causes of problematic behaviors could be uncomfortable or ill fitting clothes that a student may be asked to wear.

How do I handle my child with Autism? 
 
Because of problems with processing and integrating information, many children with autism often exhibit difficult behaviors.To be sure, this can be very challenging for parents and educators.
 
Various methods and techniques have proven successful towards the reduction of these problematic behaviors. Some of the most effective methods have relied upon the reduction of confusion in the life of the child with autism. This can be achieved through the implementation of consistent structures, that children may rely upon to get them through each day. Techniques using schedule boards that are reviewed and updated each morning have been very beneficial. Confusion also decreases with simple and consistent instructions for the completion of various tasks.
 
These proactive measures may help reduce the incidence of problematic behaviors. Very often children with autism will respond favorably to environments and tasks that have been designed to match their learning strengths.
  
Why do children with autism often display these behaviors; compulsiveness, perfectionism, odd movements and a need for organization? 
 
Perfectionism, odd movements and a need for organization may be viewed as compensating behaviors that help individuals with autism cope with their various neurological impairments. These compensating behaviors often provide individuals with some much needed stability in a world that may seem very confusing.

What is different about my child's sensory systems? 
 
Children with autism may be hyposensitive or hypersensitive in their responses to various sensory input. Being hyposensitive may include a high degree of tolerance to pain. This circumstance can be dangerous and should always be considered when children with autism are working around hot surfaces or objects.
 
Other children with autism may be hypersensitive to pain or refuse to wear anything but loose fitting, soft clothing. This circumstance is often referred to as tactile defensiveness and should be considered whenever touching a child with autism.

Is my child with Autism being stubborn? 
 
Many children with autism seem to be very stubborn. While that may be true it is also true that this is a far too simplistic rationale for the behaviors.
 
Keep in mind the role that neurological impairments play in the behaviors of children with autism. What may seem like an example of stubbornness may result from not having understanding or empathy for others. This often results in self-centeredness.
 
Confusion is common in the lives of children with autism. When steps are taken to help them understand their environment and what is expected of them, it is possible to reduce or replace behaviors that previously seemed to be examples of stubbornness.

Why is early intervention important? 
 
Both scientific studies and practical experience have shown that the prognosis is greatly improved if a child is placed into an intense, highly structured educational program by age two or three. Autistic children perform stereotypic behaviors such as rocking or twiddling a penny because engaging in repetitive behaviors shuts off sounds and sights which cause confusion and/or pain. The problems is that if the child is allowed to shut out the world, his brain will not develop. 

 

 

 

PREDICTING AUTISM

 

An important new study offers clues into how this disabling disease progresses.

 

By Geoffrey Cowley
NEWSWEEK

 

July 28 issue   Of all the misfortunes a child can suffer, few provoke as much dread as autism. The conditiona neurological disorder that impedes language and derails social and emotional developmenthas become ever more common in recent decades, thanks partly to better diagnosis.

 

EXPERTS NOW SUSPECT that one person in 160 lives with some degree of autism. Thats three to four times the rate in the 1970s.

 

But while the outward manifestations are well known, science is just beginning to illuminate the underlying biology. What goes wrong in the autistic brain? What defect or injury leaves it largely incapable of empathy? A growing body of evidence, capped last week by new findings from the University of California, San Diego, raises a tantalizing possibility. The new study, published in The Journal of the American Medical Association, links the condition to abnormally rapid brain growth during infancyand it raises new hopes for diagnosis and treatment.

 

The key to last weeks finding was not a million-dollar imaging device but a tape measure. Past studies have shown that autistic toddlers have abnormally large brains for their age. But because autism is rarely detected in kids younger than 2 or 3 years old, researchers have never known quite how that situation arises. Two years ago the San Diego team realized that childrens old medical records might hold important clues. Led by neuroscientist Eric Courchesne, the researchers tracked down early-childhood head measurements for 48 autistic preschoolers, and compared them with national norms. As it turned out, the kids heads had been smaller than average at birth but had grown explosively during infancy, shooting from the 25th percentile to the 84th in roughly a years time. And faster growth predicted greater impairment. Mildly autistic subjects reached only the 59th percentile, but the severely afflicted kids reached the 95th percentile.

 

The implications are hard to miss. Autism, the new findings suggest, is not a sudden calamity that strikes children at the age of 2 or 3 but a developmental problem that can be traced back to infancy. That alone should help allay the suspicion that autism is caused by vaccines or pollutants that kids encounter later in childhood. But the new findings say less about the causes of autism than about its dynamics. The current study focuses on the first year of life, but the trouble isnt confined to that period. Other recent studies suggest that the early growth spurt is followed by several years of slower expansion, giving the autistic child an adult-size brain by the age of 4 or 5. During adolescence and adulthood, autistic brains are generally no larger than normal ones. Unfortunately, they exhibit a range of other anomalies, including dense clusters of underdeveloped cells in the hippocampus and amygdalastructures that are critical for integrating emotional and sensory information. 

 

Does rapid growth actually cause all this damage? Its still an open question. The abnormal growth patterns give you a clue that something is amiss, says Dr. Margaret Bauman, a neurologist at Harvard Medical School and the LADDERS Autism Research Foundation, but we can only guess at the underlying process. Courchesne believes it can be summed up in three words: growth without guidance. Normal brain development is not a monologue but a dialogue, in which the brain generates neural circuits and the childs experiences determine which ones survive. The first year of life is a critical period for this experience-guided growthand its not hard to see how a sudden shift into high gear might derail it. The brains circuitry would expand haphazardly as cell growth outpaced experience, creating a chronic sensory overload. Courchesne hopes researchers will now confirm the dangers of unregulated brain growth by inducing it experimentally in animals. Once we know what causes this growth defect, he says, it may be possible to use biological treatments to counter it.

 

The more immediate goal is simply to recognize autism at earlier stages, and to give affected kids the support they need to grow and learn and cope. Will the new findings advance that cause? Dr. Janet Lainhart, an autism expert at the University of Utah, is skeptical. The findings... are most useful to researchers attempting to define the underlying developmental neuropathology of autism, she writes in |a commentary on the San Diego study, rather than to physicians trying to identify young children with autism. Thats because rapid head growth can signal other childhood maladies, including tumors and hydrocephalus, and often means nothing at all. Lainhart calculates that if doctors used head circumference as a screening test for autism, they would pick up 60 healthy children for every autistic one. Courchesne concedes the point, but he still believes its prudent for pediatricians to monitor head growth. The worlds oldest measurement tool still has the power to amaze, he says. It may not provide a definitive diagnosis, but its inexpensive, noninvasive and objectiveand most of the concerns it raises can quickly be resolved. Where autism is concerned, thats still as good a goal as any.

 

© 2003 Newsweek, Inc.

http://www.msnbc.com/news/941426.asp?0cv=CB20&cp1=1#BODY

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ALEXITHYMIA is the inability to talk about feelings due to a lack of emotional awareness. Extreme cases are associated with a broad range of psychopathologies, including somaticization disorder, Asperger's syndrome, post-traumatic stress disorder, bulimia nervosa and narcotics dependency. However, the term is used principally when the emotional disorder occurs on its own.  More info and links on my "Links" page.  (Thanks to my sister Margo for bringing this to my attention.)
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ANGELMAN Syndrome is a neurogenetic disorder first described by English Physician Harry Angelman in 1965. The condition was considered to be extremely rare--indeed many physicians doubted its existence -- until the 1980s when a deletion on the maternal 15th chromosome was discovered to be the cause of Angelman Syndrome in a majority of cases.

The incidence of AS is unknown as there are no published epidemiological studies. In the United States, the Angelman Syndrome Foundation is aware of approximately 1,000 individuals, so the disorder is not extremely rare. AS has been reported throughout the world among divergent racial groups. In North America, the great majority of known cases seem to be of Caucasian origin. The exact incidence of AS is unknown and estimate of between 1 in 15,000 to 1 in 30,000 seems reasonable.

Classic features of Angelman Syndrome include a stiff jerky gait; severe developmental delay; absent speech; happy demeanor; hypopigmented skin; a protruding tongue; and seizures. Children with Angelman Syndrome are also reported to display a fascination with water and plastic, and many experience sleep disturbances. 
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APHASIA is a neurological disorder caused by damage to the portions of the brain that are responsible for language. Primary signs of the disorder include difficulty in expressing oneself when speaking, trouble understanding speech, and difficulty with reading and writing. Aphasia is not a disease, but a symptom of brain damage. Most commonly seen in adults who have suffered a stroke, aphasia can also result from a brain tumor, infection, head injury, or dementia that damages the brain. It is estimated that about 1 million people in the United States today suffer from aphasia. The type and severity of language dysfunction depends on the precise location and extent of the damaged brain tissue.

Generally, aphasia can be divided into four broad categories: (1) Expressive aphasia involves difficulty in conveying thoughts through speech or writing. The patient knows what he wants to say, but cannot find the words he needs. (2) Receptive aphasia involves difficulty understanding spoken or written language. The patient hears the voice or sees the print but cannot make sense of the words. (3) Patients with anomic or amnesia aphasia, the least severe form of aphasia, have difficulty in using the correct names for particular objects, people, places, or events. (4) Global aphasia results from severe and extensive damage to the language areas of the brain. Patients lose almost all language function, both comprehension and expression. They cannot speak or understand speech, nor can they read or write.

Is there any treatment?
In some instances, an individual will completely recover from aphasia without treatment. In most cases, however, language therapy should begin as soon as possible and be tailored to the individual needs of the patient. Rehabilitation with a speech pathologist involves extensive exercises in which patients read, write, follow directions, and repeat what they hear. Computer-aided therapy may supplement standard language therapy.

What is the prognosis?
The outcome of aphasia is difficult to predict given the wide range of variability of the condition. Generally, people who are younger or have less extensive brain damage fare better. The location of the injury is also important and is another clue to prognosis. In general, patients tend to recover skills in language comprehension more completely than those skills involving expression.

What research is being done?
The NINDS and the National Institute on Deafness and Other Communication Disorders conduct and support a broad range of scientific investigations to increase our understanding of aphasia, find better treatments, and discover improved methods to restore lost function to people who have aphasia.

Organizations

American Speech Language Hearing Association (ASHA)
10801 Rockville Pike
Rockville, MD 20852-3279
actioncenter@asha.org
http://www.asha.org
Tel: 301-897-5700 800-638-8255
Fax: 301-571-0457

National Aphasia Association
29 John Street
Suite 1103
New York, NY 10038
naa@aphasia.org
http://www.aphasia.org
Tel: 212-267-2814 800-922-4NAA (4622)
Fax: 212-267-2812

Aphasia Hope Foundation
2436 West 137th Street
Leawood, KS 66224
judistradinger@aphasiahope.org
http://www.aphasiahope.org
Tel: 913-402-8306 866-449-5804

National Institute on Deafness and Other Communication Disorders (NIDCD)
National Institutes of Health
Bldg. 31, Rm. 3C35
Bethesda, MD 20892-2320
nidcdinfo@nidcd.nih.gov
http://www.nidcd.nih.gov
Tel: 301-496-7243 TTD/TTY: 301-241-1055

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APRAXIA OF SPEECH is a neurologically-based motor planning speech disorder that effects a very small number of children. Children with apraxia have:

~Extreme difficulty translating their thoughts into correct sequence of movements of their mouth, tongue, and lips.
~Speech that is very limited and unclear, making it difficult for others to understand the child, even their own families.

Childhood Apraxia of Speech is not something that can be 'outgrown'. With early speech therapy provided by a trained speech-language pathologist, many children are capable of learning to speak clearly and communicate effectively. Without the necessary and appropriate therapy, children with apraxia may never speak clearly and experience a lifetime of frustration. 
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ASPERGER'S Syndrome is a PDD characterized by impairment in social interaction, development of restricted, repetitive patterns of behavior, interests, and activities.  In contrast to Autism, there are usually no clinically significant delays in language or cognition. As with Autism, it appears to be more common in males. Onset is later than what is seen in Autism, or at least recognized later. A large number of children are diagnosed between the ages of 5 and 9.  Motor delays, clumsiness, social interaction problems, and idiosyncratic behaviors are also seen.

Aspergers is not easily recognizable - in fact, many children are misdiagnosed with other neurological disorders such as Tourette's Syndrome or Autism. More frequently, children are misdiagnosed with Attention Deficit(and Hyperactivity) Disorders (ADD & ADHD), Oppositional Defiant Disorder(ODD), or Obsessive-Compulsive Disorder (OCD).

These errors in diagnosis lead to a delay in treatment of the disorder. Many meds and natural remedies are used to treat multiple neurological and pervasive developmental disorders. Treatments vary to a great degree with the individual person - no single medication or remedy works for everyone. Because it is so new and so difficult to
diagnose, our society is ill-equipped to deal with the special educational needs of children afflicted with Aspergers. 
 
People with Asperger syndrome find it more difficult to read the signals which most of us take for granted. As a result they find it more difficult to communicate and interact with others. Asperger syndrome is a form of autism, a condition that affects the way a person communicates and relates to others. A number of traits of autism are common to Asperger syndrome including:
  • difficulty in social relationships
  • difficulty in communicating
  • limitations in imagination and creative play

However, people with Asperger syndrome usually have fewer problems with language than those with autism, often speaking fluently though their words can sometimes sound formal or stilted. Because many children with Asperger Syndrome may not have (or appear to have) learning disabilities, many enter mainstream school and, with the right support and encouragement, can make good progress and go on to further education and employment.

Asperger syndrome shares many of the same characteristics as autism. The key characteristics are:

Difficulty with social relationships
Unlike the person with 'classic' autism, who often appears withdrawn and uninterested in the world around them, many people with Asperger syndrome want to be sociable and enjoy human contact. They do still find it hard to understand non-verbal signals, including facial expressions, which makes it more difficult for them to form and maintain social relationships with people unaware of their needs.

Difficulty with communication
People with Asperger syndrome may speak fluently but they may not take much notice of the reaction of the people listening to them; they may talk on and on regardless of the listener's interest or they may appear insensitive to their feelings.

Despite having good language skills, people with Asperger syndrome may sound over-precise or over-literal - jokes can cause problems as can exaggerated language, turns of phrase and metaphors. A person with Asperger syndrome may be confused or frightened by a statement like 'she bit my head off'. In order to help a person with Asperger syndrome to understand you, keep your sentences short - be clear and concise.

Limitations in imagination
While they often excel at learning facts and figures, people with Asperger syndrome find it hard to think in abstract ways. This can cause problems for children in school where they may have difficulty with certain subjects such as literature or religious studies.

Special interests
People with Asperger syndrome often develop an almost obsessive interest in a hobby or collecting. Usually their interest involves arranging or memorising facts about a special subject, such as train timetables. With encouragement interests can be developed so that people with Asperger syndrome go on to study or work in their favourite subjects.

Love of routines
People with Asperger syndrome often find change upsetting. Young children may impose their routines, such as insisting on always walking the same route to school. At school, they may get upset by sudden changes, such as an alteration to the timetable. People with Asperger syndrome often prefer to order their day according to a set pattern. If they work set hours then any unexpected delay, such as a traffic hold-up, or a late train, can make them anxious or upset.

These are the main features of the condition, but because every person is an individual, these characteristics will vary greatly and some may be demonstrated more strongly than others.

What causes Asperger syndrome?

The causes of autism and Asperger syndrome are still being investigated. Many experts believe that the pattern of behaviour from which Asperger syndrome is diagnosed may not result from a single cause. There is strong evidence to suggest that Asperger syndrome can be caused by a variety of physical factors, all of which affect brain development - it is not due to emotional deprivation or the way a person

Is there a cure?

Asperger syndrome is a developmental condition affecting the way the brain processes information and there is no 'cure'; children with Asperger syndrome become adults with Asperger syndrome. Much can be achieved to make life less challenging with appropriate education and support.

With time and patience people with Asperger syndrome can be taught to develop the basic skills needed for everyday life, such as how to communicate appropriately with people.

The importance of early diagnosis

Because the condition of people with Asperger syndrome is not as marked as those with autism, they may not be diagnosed for a long time. This can mean that their particular needs may go unrecognised and parents may blame themselves, or worse still blame their child for their unusual behaviour.

What does the future hold?

At present, there are few facilities specifically for children with Asperger syndrome. Some children are in mainstream schools where their progress depends on the support and encouragement of parents, carers and teachers. Some children with Asperger syndrome go to specialist schools for children with autism or learning disabilities.

Because their disability is often less obvious than that of someone with autism, a person with Asperger syndrome is, in a sense, more vulnerable. They can, sadly, be an easy target for teasing or bullying at school.

As they get older, they may realise that they are different from other people and feel isolated and depressed. People with Asperger syndrome often want to be sociable and are upset by the fact that they find it hard to make friends.

But the future for people with Asperger syndrome does not have to be bleak. Adults with Asperger syndrome can and do go on to live fulfilling lives, to further education and employment and to develop friendships.

In the workplace, people with Asperger syndrome can offer a great deal - punctuality, reliability and dedication - though informed and understanding employers and colleagues are essential.
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ATTENTION DEFICIT HYPERACTIVITY DISORDER, often called ADD or ADHD, is a diagnostic label that is given to children and adults. ADD impacts about (5%)of students in the United States. Six or more of the following symptoms of inattention have persisted for at least six months to a degree that is maladaptive and inconsistent with developmental level:

~Often fails to give close attention to details or makes careless mistakes in schoolwork, work, or other activities
~Often has difficulty sustaining attention in tasks or play activities
~May not seem to listen when spoken to directly
~Often does not follow through on instructions and fails to finish schoolwork, chores, or duties in the workplace (not due to oppositional behavior or failure to understand instructions)
~Often has difficulty organizing tasks and activities
~Often avoids, dislikes, or is reluctant to engage in tasks that require sustained mental effort (such as school work or homework)
~Often loses things necessary for tasks or activities(e.g., toys, school assignments, pencils, books, or tools)
~Is often easily distracted by extraneous stimuli
~Is often forgetful in daily activities

Six or more of the following symptoms of hyperactivity/impulsivity have persisted for at least six months to a degree that is maladaptive and inconsistent with developmental level:

Hyperactivity
~Often fidgets with hands or feet or squirms in seat
~Often leaves seat in classroom or in other situations in which remaining seated is expected
~Often runs about or climbs excessively in situations in which it is inappropriate (in adolescents or adults, may be limited to subjective feelings of restlessness)
~Often has difficulty playing or engaging in leisure activities quietly
~Is often "on the go" or often acts as if "driven by a motor"
~Often talks excessively

Impulsivity
~Often blurts out answers before questions have been completed
~Often has difficulty with turn-taking
~Often interrupts or intrudes on others (e.g. butts into conversations or games)

Some hyperactive, impulsive or inattentive symptoms that cause impairment may be present before 7 years of age. Some impairment from the symptoms is present in two or more settings (e.g.,at school or work and at home).

There must be clear evidence of clinically significant impairment in social, academic, or occupational functioning .

The symptoms do not occur exclusively during the course of a pervasive developmental disorder, schizophrenia, or other psychotic disorder, and are not better accounted for by another mental disorder (e.g., mood disorder,anxiety disorder, dissociative disorder, personality disorder.) 
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AUTISM AND PERVASIVE DEVELOPMENTAL DISORDER-NOS (not otherwise specified)are developmental disabilities that share many of the same characteristics. Usually evident by age three, autism and PDD-NOS are neurological disorders that affect a child's ability to communicate, understand language, play, and relate to others. In the diagnostic manual used to classify disabilities, the DSM-IV (American Psychiatric Association, 1994), "autistic disorder" is listed as a category under the heading of "Pervasive Developmental Disorders." A diagnosis of autistic disorder is made when an individual displays 6 or more of 12 symptoms listed across three major areas: social interaction, communication,and behavior. When children display similar behaviors but do not meet the criteria for autistic disorder, they may receive a diagnosis of Pervasive Developmental Disorder-NOS (PDD not otherwise specified).

Due to the similarity of behaviors associated with autism and PDD, use of the term pervasive developmental disorder has caused some confusion among parents and professionals. However, the treatment and educational needs are similar for both diagnoses.

Autism and PDD are four times more common in boys than girls. Their causes are unknown.

CHARACTERISTICS

Some or all of the following characteristics may be observed in mild to severe forms:

- Communication problems (e.g., using and understanding language);
- Difficulty in relating to people, objects, and events;
- Unusual play with toys and other objects;
- Difficulty with changes in routine or familiar surroundings; and
- Repetitive body movements or behavior patterns.

Children with autism or PDD vary widely in abilities, intelligence, and behaviors. Some children do not speak; others have limited language that often includes repeated phrases or conversations. People with more advanced language skills tend to use a small range of topics and have difficulty with abstract concepts. Repetitive play skills, a limited range of interests, and impaired social skills are generally evident as well. Unusual responses to sensory information are also common. Some examples are: loud noises, lights, certain textures of food or fabrics.

Autism has no single cause. Researchers believe several genes, as well as environmental factors such as vaccines, viruses or chemicals, contribute to the disorder. Studies of people with autism have found abnormalities in several regions of the brain, including the cerebellum, amygdala, hippocampus, septum, and mamillary bodies. Neurons in these regions appear smaller than normal and have stunted nerve fibers, which may interfere with nerve signaling. These abnormalities suggest that autism results from disruption of normal brain development early in fetal development. Other studies suggest that people with autism have abnormalities of serotonin or other signaling molecules in the brain. While these findings are intriguing, they are preliminary and require further study. The early belief that parental practices are responsible for autism has now been disproved.

In a minority of cases, disorders such as fragile X Syndrome, tuberous sclerosis, untreated phenylketonuria (PKU), and congenital rubella cause autistic behavior. Other disorders, including Tourette Syndrome, learning disabilities, and attention deficit disorder, often occur with autism but do not cause it. For reasons that are still unclear, about 20 to 30 percent of people with autism also develop epilepsy by the time they reach adulthood. While people with schizophrenia may show some autistic-like behavior, their symptoms usually do not appear until the late teens or early adulthood. Most people with schizophrenia also have hallucinations and delusions, which are not found in autism.

Recent studies strongly suggest that some people have a genetic predisposition to autism. Scientists estimate that, in families with one autistic child, the risk of having a second child with the disorder is approximately five percent, or one in 20, which is greater than the risk for the general population. Researchers are looking for clues about which genes contribute to this increased susceptibility. In some cases, parents and other relatives of an autistic person show mild social, communicative, or repetitive behaviors that allow them to function normally but appear linked to autism. Evidence also suggests that some affective, or emotional disorders, such as manic depression, occur more frequently than average in families of people with autism. 
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BI-POLAR DISORDER

The clinical presentations of Bi-Polar disorder are broad and include mania, hypomania and psychosis. Frequently associated comorbid conditions include substance abuse and anxiety disorders. Patients with acute mania must be evaluated urgently. Bipolar disorder is characterized by variations in mood, from elation and/or irritability to depression. This disorder can cause major disruptions in family, social and occupational life.

Bipolar I disorder is defined as episodes of full mania alternating with episodes of major depression. Patients with mania often exhibit disregard for danger and engage in high-risk behaviors such as promiscuous sexual activity, increased spending, violence, substance abuse and driving while intoxicated. Bipolar I disorder is typically diagnosed when patients are in their early 20s. Manic symptoms can rapidly escalate over a period of days and frequently follow psychosocial stressors.

Bipolar II disorder is characterized by recurrent episodes of major depression and hypomania. Hypomania is manifested by an elevated and expansive mood. The behaviors characteristic of hypomania are similar to those of mania but without gross lapses of impulse and judgment. Hypomania does not cause impairment of function and may actually enhance function in the short term. It is typically brought to medical attention when the patient is depressed. A careful history will usually illuminate the diagnosis.

Some depressed patients exhibit hypomania when given antidepressants. This variation is sometimes referred to as bipolar III disorder. The criteria for major depressive episode and manic episode are described in the Diagnostic and Statistical Manual of Mental Disorders, 4th ed. (DSM-IV). You will find a link for the DSM-IV on the links page.

The prevalence of bipolar disorder does not differ in males and females. It affects persons of all ages. The incidence of bipolar disorder is increased in first-degree relatives of persons with the disorder, as is the incidence of other mood disorders.(One study revealed a 13 percent risk of bipolar disorder among offspring of persons with the disorder. The risk of unipolar depression was 15 percent, and the risk of schizoaffective disorder was 1 percent. Because of the familial association, genetic counseling should be offered to patients and their families as part of comprehensive educational and supportive approaches. 
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CENTRAL AUDITORY PROCESSING DISORDER

People know that we hear with our ears, but we should all remember that it is our brain that makes use of the information we hear. If the brain is unable to correctly process what is said, the message is lost or misunderstood. This is known as central auditory processing disorder (CAPD).Studies have shown that we begin to develop our listening skills even before we are born, and that one day-old infants with normal hearing can already identify the difference between certain sounds. Continued development of good hearing skills is critical for successful learning.

Unfortunately, all children may not have good listening abilities. When a child's brain has difficulty processing speech, he or she may need special help to learn to listen more effectively. Central auditory processing disorder may be described as difficulty in processing auditory information although hearing sensitivity and intellectual ability are unimpaired.

There are many causes of Central Auditory Processing Disorder, or CAPD. One cause is middle ear infections or otitis media. A large percentage of children who have CAPD also have a significant history of ear infections during the first two years of life. Frequent ear infections may also be associated with hearing loss and may cause delayed language and speech development.

To try to understand what effect this has, try to imagine learning a foreign language while wearing earplugs.This is a little like what children with CAPD face in the classroom on a daily basis. This said, it's easy to understand how they could fall behind academically,lose self-esteem, or be labeled as having behavioral problems.

Some common symptoms associated with CAPD are:

~not listening carefully to instructions
~being easily distracted by background noise
~difficulty with phonics or speech sounds, spelling and/or reading
~poor learning through the auditory or hearing channel behavioral problems
~below average academic performance

This disorder is identified by a specially trained audiologist. If your child exhibits two or more of the symptoms listed, make an appointment with a specialist as soon as possible. Screening tests are available for children as young as three years. A child five years or older may be administered a full CAP test battery. The CAP test battery should not only measure hearing, but also should identify the presence or absence of CAPD. The audiologist should then classify the type and severity of the child's CAP disorder, and provide recommendations to help the child in school and at play.

Some management techniques for central auditory processing disorder that may be suggested:

~special language treatment such as sound blending and auditory memory exercises
~listening training in the presence of background noise
~self help techniques to improve overall communication
~activities which may be used by the teacher in the classroom or by parents at home

Enhancement of the auditory environment which may include:

~preferred seating to enable the child to easily see the teacher's face and the blackboard
~acoustic room treatment to reduce background noise and the echo or reverberation
~use of FM auditory enhancement systems

With these systems the teacher wears a wireless microphone which transmits her speech signal directly to the child's ear or through a strategically placed speaker, while she moves around the classroom. 
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DANDY WALKER
 
What is Dandy-Walker Syndrome?
Dandy-Walker Syndrome is a congenital brain malformation involving the cerebellum (an area at the back of the brain that controls movement) and the fluid filled spaces around it. The key features of this syndrome are an enlargement of the fourth ventricle (a small channel that allows fluid to flow freely between the upper and lower areas of the brain and spinal cord), a partial or complete absence of the cerebellar vermis (the area between the two cerebellar hemispheres), and cyst formation near the internal base of the skull. An increase in the size of the fluid spaces surrounding the brain as well as an increase in pressure may also be present. The syndrome can appear dramatically or develop unnoticed. Symptoms, which often occur in early infancy, include slow motor development and progressive enlargement of the skull. In older children, symptoms of increased intracranial pressure such as irritability, vomiting, and convulsions, and signs of cerebellar dysfunction such as unsteadiness, lack of muscle coordination, or jerky movements of the eyes may occur. Other symptoms include increased head circumference, bulging at the back of the skull, problems with the nerves that control the eyes, face and neck, and abnormal breathing patterns. Dandy-Walker Syndrome is frequently associated with disorders of other areas of the central nervous system including absence of the corpus callosum (the connecting area between the two cerebral hemispheres, and malformations of the heart, face, limbs, fingers and toes.

Is there any treatment?

Treatment for individuals with Dandy-Walker Syndrome generally consists of treating the associated problems, if needed. A special tube to reduce intracranial pressure may be placed inside the skull to control swelling. Parents of children with Dandy Walker Syndrome may benefit from genetic counseling if they intend to have more children.

What is the prognosis?

Children with Dandy-Walker Syndrome may never have normal intellectual development, even when the hydrocephalus is treated early and correctly. Longevity depends on the severity of the syndrome and associated malformations. The presence of multiple congenital defects may shorten life span.

What research is being done?

The NINDS conducts and supports a wide range of studies that explore the complex mechanisms of normal brain development. The knowledge gained from these fundamental studies provides the foundation for understanding abnormal brain development and offers hope for new ways to treat and prevent developmental brain disorders such as Dandy-Walker Syndrome.

Link for organizations: http://www.ninds.nih.gov/disorders/dandywalker/dandywalker.htm#Organizations

 
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DYSARTHRIA

Dysarthria is a speech disorder that is due to a weakness or incoordination of the speech muscles. Speech is slow, weak, imprecise or uncoordinated. It can affect both children and adults. "Childhood dysarthria" can be congenital or acquired. It is often a symptom of a disease, such as cerebral palsy, Duchenne muscular dystrophy, myotonic dystrophy, Bell palsy. In both adults and children, it can result from head injury.

In adults, dysarthria can be caused by stroke, degenerative disease (Parkinson's, Huntington's, amyotrophic lateral sclerosis, multiple sclerosis, myasthenia gravis), infections (meningitis), brain tumours, and toxins (drug or alcohol abuse, lead poisoning, carbon monoxide, etc.).

In order for speech to be clear, a number of subsystems must work together. A weakness in any one of the systems can result in dysarthria. So can an incoordination between systems. The lungs (respiratory subsystem) supply the air necessary to power the speech system. The voice box or larynx (laryngeal) sets the air vibrating and creates voice. The soft palate (velopharyngeal) acts a door between the oral and nasal cavities and channels air to one or both cavities resulting in different sound quality. The lips, tongue, teeth, and jaw (articulatory) move to further channel and shape the sounds into the various vowels and consonants.

If the respiratory subsystem is weak, then speech may be too quiet and produced one word at a time. If the laryngeal system is weak, speech may be breathy, too quiet and slow. If the velopharyngeal subsystem is not working, speech may sound too nasal or nasal sounds may be misssing. If the articulatory subsystem is not working, speech may sound slurred, may have many errors and may be slow and laboured.

Therapy for dysarthria focuses on maximizing the function of all systems. Compensatory strategies are often used. Individuals with dysarthria may be advised to take frequent pauses for breath, to over-articulate, or to pause before important words to make them stand out. If there is muscle weakness, they may benefit from performing oro-facial exercises. This helps to strengthen the muscles of the face and mouth that are used for speech.

For some people, speech is not a viable option. Alternative or augmentative systems are frequently used. These can be low tech or high tech. An example of a low tech system would be an alphabet board. The individual points to letters to spell out messages. "Pic-syms" are picture symbols, black and white line drawings with print that can be combined on a communication board or book. The individual points to the appropriate picture or combination of pictures to communicate. High tech systems include computers and voice output devices. A regular computer keyboard, monitor and word processor can be used to type out and display messages. Programs that predict words and sentences can speed up this method of communicating. Some indivduals are unable to read and have a computer system that uses symbols - they select a symbol